Jump In for James

Here we go again!

2012-02-04T19:04:00.000-08:00

James and I are off on another adventure to Children's in Birmingham. We are leaving in the morning but poor Josh has to stay home and go to work :-( boooo! He will get to come visit some which will be nice. James will be participating int he Spider Program that Children's does. It is a mix of the Adeli suit, Conductive Education therapy and traditional physical therapy....basically that is the best way I can describe it. Now sure if the therapist would describe it like that but from what we have experience that is what it is. All I know is that it works, and has transformed James. He comes out of the program stronger with much more confidence. The down side for use is that it is really hard on James. The therapy is very intense and usually pushing him to his sensory limit. BUT every time we go he gets better and better. I know he is on good hands and they have lots of tricks up their PT sleeves that help James overcome any sensory issues that arise. But please pray that James will be the ray of sunshine that I know he can be. I want them to see the sweet James that everyone else sees on a day to day bases...not the devil child that he can be when he is overwhelmed LOL

I will be blogging about his progress and post lots of pictures of course!!

If today were different

2012-02-02T17:03:00.000-08:00

If today was different, what would it look like? Would I be holding a new born baby girl or another beautiful baby boy?

If today were different, would you have your daddy's long eyelashes?

If today were different, would you use your tiny fingers to hold tightly onto my thumb?

If today were different, would I be rocking you to sleep in my arms and smell the sweetness of your skin?

If today were different, would James be a big brother?

But today isnt different, and my arms ache for you. A child that no one else even remembers existed.

A child that I never even knew.

A child that was wanted and loved the second we first heard your heartbeat. Even for that brief period of time that you were with us. A child that I had dreams for even if you were just with us for 14 weeks.

Today is the same day on the calendar that I penciled in the date that you were supposed to arrive.

Today is supposed to be different.

But it isnt.

Its that time again and CP Connection

2012-02-01T11:51:00.000-08:00

Me and my little traveling buddy are off again.

I will be taking him to Birmingham for the month of Feb for another intensive physical therapy program. We planned this to go a long with his post-op rehab and I am excited to see the changes that they see and also the progress he will make with this very intensive program.

He always comes home a changed little boy. It is really hard to check out of regular life and be away from the hubby for so very long but I know it is worth it all in the end. We have learned to make the Ronald McDonald house as much home as we can and he will have a new friend that is going through the camp the same time frame. I know that will be fun for him. And Josh and I have committed to do everything we can to give James the best chance in life. I mean look at this face! How can you not route for him!! hehe

James got new braces...yes again! We just cant seem to find that perfect combo. A lot of that is because he keeps improving and changing. We started with DAFO #4 but that was before his SDR. After the SDR they wanted to taller version which is a DAFO #3 but we decided to go with a turbo AFO just because I like the ease of how they go on. NOW we have the craziest combo I could come up with LOL. I am so glad I have an orthotist that is willing to listen to me and keep trying. The AFO that is pictured below is a combo of a TURBO ( which means is comes in 2 pieces) and then I had them add a hinge and a stability strap. I did this because we had on therapist that wanted the hinge for freedom of movement but another therapist wanted the solid afo.SO I compromised for them and had a stability strap added so that we loosen it and the hinge works but if we tighten it then it makes the afo like a solid. I also had them cast the tall part of the afo over a DAFO #4 which is what St. Louis wanted us to get. so really it is a 4 in 1 afo! I have to say I am pretty proud that I got all that in one. And so far they are working really well. Making everything doctor and therapist happy is like juggling bowling balls!

The other day it was warm enough to get out and do a little bike riding. This was the first time James had been on his bike since before his surgery. I was really excited to see that he could pedal so much better.

Daddy and James playing Guitar hero. James told me that he totally rocks!

Check out that hamstring stretch!!

Just a typical grocery run. James doesnt fit in the seat anymore. Not that he ever come sit in it well. PLEASE support this lady that has made a cart for kids like James http://carolinescart.com/

I am participating in a CP Connection.

Being my friend is tough

2012-01-28T10:15:00.000-08:00

This is a post that I have been thinking about writing for such a long time. About 4 years and 3 months to be exact. I have always been a pretty loyal person. when I befriend someone I tend to throw everything I have into the friendship.I grew up in a family that was very close and we were also very open about our lives and feelings. I am the same way with my friends. My sister is one that has always had a ton of friends around her, I'm not really like that. I usually have a lot of people close to me but only a few that I am truly close and intimate friends with. We laugh that for my sisters 13 birthday she wanted to invite just 40 of her "closet friends" haha I wish I was more like that.

I have learned that being my close friend is apparently difficult for most. In a perfect world and situation or even just a typical one, I think it would be easier, but I don't live that life. Play dates are hard to schedule around doctors appointments and physical therapy. Joining someone for a unscheduled lunch date is almost impossible because every second of my "free time" is clogged with playing catch up. And I know that is frustrating to people because it comes across that I am distant or don't care about developing relationships I think. If only people knew how dearly I crave other mother friendship.

Before James I would have never understood a post like this. I would have been just like everyone else and not truly understood how having a child with a disability controls your schedule and life at times. Other mom's move from stage to stage and milestone to milestone, but we are usually stuck in the same stages of life for long periods of time. And as other kids develop physically, it leaves us behind and that means that I have less and less in common with those other moms. Yes we have many ares still in common and the friendship tries to hang on. I have discovered that as those moms move on to T-ball , soccer, karate I am still talking about James being able to wiggle a toe and the friendship stops growing. When they say " hey lets take the kids to the park after school" I have to say know because I know that James will be to exhausted. I cant do a morning play date because we have physical therapy to go to and I can do one in the afternoon because James HAS to have a nap still at 4 years old. I have plan in advance things that they decided to do on a whim.
I causes the relationship to stall eventually because they just stop inviting us. Sometimes it is because they feel sorry for me and eventually get so uncomfortable because they don't know what to say anymore. Sometimes they start to feel that I am so focused on my son I am being selfish by not spending time with them, but most of the time the friendship just dies on the vine because they have moved on to a different aspect of life and we are still working on the basics.

Don't get my wrong it isn't all them. I hold responsibility for this happening to. I am totally focused on James and his physical ability and I know it takes a very patient person to hang around for that. When your child needs extra help to do simple tasks it makes you think twice about the simplest things. Friends have called me to take the kids to play dates. Usually they are so sweet and try to think of a place that will have something that James can do...in their eyes. I try to put on a smile and then head to google to look up the location to see if they have ramps, and activities that James can to. When we get there the other kids run off to do the age appropriate things and I will take James to something he can play on. I cant sit with the moms and chat, because I have to physically help James move and play. So we end up being isolated even at a play date and that makes everyone so uncomfortable.

When it comes to my schedule, no one ever gets that. They just can comprehend 3 physical therapy appointments every week, and then school, doctors appointments, orthopedic appointments, IEP meetings, and stretching that we do. I added up a typical week's appointments and school and it came to 46.5 hours a week! No wonder it is hard to find time for friends when a 4 year old is working a full time job! And those are the typical days, the months that we have surgery or intensive pt camp.....gosh I hardly get a shower much less conversation that doesn't involve talking about heel-cords or spastic nerves. When you have to check out of the everyday life for months at a time it is hard on relationships. I know that I sound like I am complaining about my life and I guess to a degree I am complaining about this aspect. I truly don't mean to. God has blessed me with the ability to do all these things for James and if others cant understand why I do all of this for my son, I cant fault them for distancing

What could have been

2012-01-26T11:11:00.000-08:00

This week has been bitter sweet. Sweet because James is making such wonderful progress after his surgery. We are so very blessed that he is doing so well. But there is a little bit of sadness for me this week. Those of you that have been reading for a little while will remember that back on August I posted about another miscarriage that Josh and I suffered. Well this week is the due date week. I have struggled dealing with the emotions of losing this pregnancy and baby. I was doing well until I started to get in the mail infant formula and other promotional "gifts" from companies that I had signed up with online.

I have 3 cans of infant formula lined up on my kitchen counter and every time I walk by them my heart hurts. But I just cant seem to move them out of sight. Weird I know, but I feel that the sadness of this loss is all I have left so I don't want to just brush it aside. Not sure if that is healthy thing but that is where I am right now. I just think about how different our life would be if my body didn't betray me like this. We would be getting ready to welcome a brother or sister into the house for James and I think he would be so excited. But instead I am just left with cans of formula that will never be opened.

I am going to try and find some good use for them this week. I need to know that they will go to some use. Hopefully I can find a family that can use them or an organization that needs them. I just think it would fill this hole if I knew that they wont just sit on my counter and ruin.

3 weeks Post op

2012-01-24T16:23:00.000-08:00

James is just flat out amazing. He is 19 days post surgery and is back to his feisty and active self. We are noticing little changes that are making HUGE changes in his walk and body. Now I am under no delusions that my son's feet are moving like a typically developing child's feet now but they are moving! That is the miracle in itself right there. After the SDR James could bend his legs and separate them at will. He even could start to move his feet and toes some. But after this PERC lengthening WOW he is wiggling and moving them more and more everyday.

He is now able to fully weight bear on his feet and he seems to have grown a foot!

James is back in his walker and walking better than ever before. We are noticing things about his walk that we never saw before. Like we knew that his left foot tended to turn inward but now that everything is stretched we are seeing it more, but the BIG difference is that he can control it and I think with proper PT and strengthening he will correct it himself in time.

His balance is better. He got this Plasma car for Christmas and he loved it, but he still couldnt quite stay on it. Now he is able to ride it and steer. So great to have an outside toy!!

I have been doing a lot of home PT with James. St. Louis gave us a home program and we are really trying our best to follow it. But some of the exercises are just boring so I have been trying to make them a little more exciting. This is a classroom game called Crocodile Hop. It has several way to play and James really thinks it is a lot of fun. I love that I can hide PT with it!

These arent very fun looking pictures but I wanted to show you how James scars are healing. The top is the Hamstring cut and the scar in the calf is where they did the gastrocs

Here is James walking with his walker. See those heel strikes I have been talking about. The last part of the video is better because he gets off the hill he was on and pays attention to his feet.

BEST of all!!! James has started to take some steps with his canes. We are super excited about this because it is just another step to taking those independent steps one day. He stood with his canes for 2 whole minutes before getting scared and asking for help. And he took 4 steps with his canes before he realized that I had let go. Progress is always welcome in this house!!

Little Movements that move mountains

2012-01-13T18:22:00.000-08:00

If you are a parent of a child with some special needs you understand my title. In parenting we get so focused on those "big" childhood development milestones, but one of the perks to being a mom with a kid like James is that I get to slow down and enjoy the little things. Like 2 weeks ago my son wasn't able to kick below the knee, but today while eating dinner he started kicking his legs. It was such a beautiful sight.

Here it is!

James is 8 days post op from his PERC surgery, and we are seeing so many little things that are so HUGE. Everyday James is wiggling his toes more and more. He is also now able to move his foot up and down. Today he started back walking in his walker, and for the first time he has a HEEL STRIKE!! I bet some of you never thought about how your heel hits the ground first when you walk. Well for a kids like James it never has. We had been trying to teach him this but when you can't lift your foot up that is a hard thing to do. But not anymore :-) James got into his walker for the first time tonight and that was the first thing I noticed, a heel strike. He is still very hesitant and worried about moving in a way that is going to hurt but that is fading and he is still pretty sore. We have really be working on doing things with a good attitude and he is starting to grasp that concept more and more.

James works best with a end goal in sight. He likes to know what he has to do to make the exercises be over....who doesn't right! So I have been trying to make his home exercises a little more like how I did when I taught kindergarten. I made centers and set a timer. I took each exercise that I wanted him to do and made it a fun activity ( as fun as I could) and put them through out the living room in a circle. I set the timer for 30 mins and sad that when the timer went off we were finished. So we would do each center and it actually worked. He liked having a clear goal of what I wanted him to do and also a stopping point. I knew he understood when we got to the last center and he said "Look Mommy the last center and almost finished" I did his warm up as I was explaining the centers so he thought we were just talking but I was stretching him....sneaky Mommy!

I am just thrilled with his progress so far, and I know it will only get better. Please be thankful for your children's little movements. How I wish I could give James my legs and make all this go away, but I cant do that for him. Instead I will do all that I can to make sure we celebrate each little movement because I know they will lead him to move mountains!!

A Journey in Pictures

2012-01-09T13:19:00.000-08:00

There are a lot of things I want to say about this trip to St. Louis and the surgery. I just cant seem to get all my words together because we are still so very tired, and James is still in pain during the day. So I thought I would give you guys a quick picture journey of our trip.

And we are Off!

Our home for the week

A little sight seeing and we took James to the Magic house and this was his favorite thing.

The Mock Oval Office

Evaluation Day!!

I LOVE this series because James had the camera and was taking pictures. I love seeing from his view point.

And THIS is why we come to St. Louis!!

Time to see our favorite doctor. Dr. Park

HaHA Checking out James game. Nothing like watching a world class neuro surgeon being schooled on a video game by a 4 year old!!!

The BIG day ( surgery day)

This pretty much sums up how I felt

As we are here

After some high class calm down drugs James is chilled out in the pre-op room ( we had to wait for 3 hours!)

Marked where the incisions will go

They let me use my Wal-Mart degree and assist! Just kidding, they let me go back into the OR until James fell asleep.

Recovery wake up was ROUGH

Finally resting

View from the room

Best Daddy in the world!

4 incision sites

First post op PT

James can kick!

Fist time standing post op. Lots of pain but he did it

Showing off those wiggly toes!

Headed home

Home sweet home as James said when I sat him down in his messy room to take this picture!

Surgery was a success. Dr. Dobb said he got full range of motion in his tendons, which we were hoping for. and he expected him to make a wonderful recovery. Just going to take time. Dr. Park was very happy with his progress. Dr. Park told us that he expects James to be an independent walker with in the year!

This time next week

2011-12-29T16:40:00.000-08:00

This time next week the worst part will be over. God willing, James will be out of surgery and recovering well. But that is next week, and building up to that is rough. Getting everything ready to leave for a medical trip is so hard. What to bring? And how exactly do you safely pack Hip x-rays so they don't get bent?? Pinterest doesn't have any creative cute ideas for that one :-/

We did have an answered prayer though. Our housing is taken care of for the trip. We will be staying at Haven House. It is like Ronald McDonald except that you do have to pay a small daily rent, but it is only $30! They provide breakfast and dinner for the families that are staying. This is a HUGE weight lifted off our shoulders and it really ease the financial burden by several hundred dollars for housing. My husbands work changed insurances and it will take effect Jan 1st. This is really scary for us and we are stepping out on Faith that God will provide. Because the new insurance only covers 80% of this surgery when our previous insurance was going to cover 100% after the deductible. And we had not budgeted for this since it is a change that happened last week, when this surgery bus is rolling and cant stop now. But I am grateful for the insurance that we DO have. Everything else will work out.

In the meantime, James is doing so great. He is the funniest and brightest kid I know. He got a LeapPad for his birthday and that is his most favorite thing EVER. It amazes me how quickly kids can pick up technology. He also got new braces this week. They were exactly what we ordered but will work for now. The company messed up on some things and are going to make him some new ones. Good new is he will have what he needs post op and that is the most important thing. I think he likes them much better too. They have a hinge on the ankle( that can be locked) and I think they are more comfortable for him.

We had a wonderful Christmas. This was the first year that James seemed to really get excited about Santa and presents. He had a wonderful time opening and playing with his toys Christmas morning. Then his Grandmommy and Papaw and Aunt LaLa came over for brunch. It was a very relaxing a fun day.

I will be using Twitter to update about James surgery and it is linked to James facebook page so if you want the updates feel free to join James' facebook page.

Fear and Anxiety

2011-12-22T20:33:00.000-08:00

I am afraid!

There I said it, and it is not a shameful thing to say, although my head wants to make it shameful. I am afraid that my son will die during surgery or from some complication after. I am totally consumed by this thought at times, and I know that it is not from God. I have this need to make others feel comfortable about James' surgery. I say everything will be ok. When others tell me everything will be ok, I smile and say of course, but inside I am thinking " You don't know that" "Everything was supposed to be ok when we brought him home from the NICU too" I put on a strong face to the world because fear is weakness and weakness should be shameful...right? But that is not what God's word says about weakness.

The apostle Paul found his strength in God, He reminds us that, “I …have …been in prison …frequently, been flogged …severely, and been exposed to death again and again. Five times I received from the Jews the forty lashes minus one. Three times I was beaten with rods, once I was stoned, three times I was shipwrecked, I spent a night and a day in the open sea, I have been constantly on the move. I have been in danger from rivers, in danger from bandits, in danger from my own countrymen, in danger from Gentiles; in danger in the city, in danger in the country, in danger at sea; and in danger from false brothers. …I have known hunger and thirst and have often gone without food; I have been cold and naked. …Who is weak, and I do not feel weak? Who is led into sin, and I do not inwardly burn? If I must boast, I will boast of the things that show my weakness. …I will not boast about myself, except about my weaknesses. …[God] said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong” (2 Corinthians 11:23-12:10).

I think I have read this over and over a hundred times tonight. To be able to say that my weakness is my strength, and that I delight in my fear ...Wow! I mean it complete shifts how I view my fear and anxiety. I wish I could say that I am at a place, where my fear over the dangers James having surgery aren't controlling my thoughts, but honestly I am not. I am on my way I think. I don't feel as ashamed about my fear because just like Paul I will not boast of myself and how "strong" I am because I am some "super mom" that can handle it all. Instead I will boast of my weakness of fear and how God is bringing me through this storm of anxiety. How freeing that is. I don't have to pretend that I my fear isn't controlling me because when I give that to God his power will rest on me and calm my fears.

When I started typing this post, I was in a much darker place. I came hear to vent about how unfair and unnatural my life as a parent is. I came here to whine. But God really has changed that just in the act of typing out my thoughts. I typed out all the negative and unfair things. As I was typing and reading back over them, I could see how selfish and boast-full of myself they were. I realized that what I was really typing out was a list of how I thought I knew better than God, on how to handle fear.

It brings me back to this Christmas season in a way. The fears that Mary must have had at times. To know that your child will endure pain and suffering beyond anything she could even understand. But yet she was still willing. Why am I not that willing all the time? Why do I hold on so tight to the thought that I have to be in control of my own fear that I don't allow God to show me just how awesome He is? My answer is, I don't know. It is one of my many weaknesses and I am so thankful that God's grace covers me and redeems me fresh and new everyday so that I may boast of His goodness and grace.

Merry Christmas to you and your families! My the peace of God love and grace surround your homes :-)

What is PERCS and why does he need it..

2011-12-21T16:06:00.000-08:00

Since so many have been asking me what the surgery James will be having is and why, I figured I would answer all that here and everyone can read at your leisure. I'm nice like that :-)

Ok so here is the Medical mumbo jumbo. Tendon release is a surgical procedure to cut through or disconnect a tendon The procedure normally involves cutting the tendon and allowing it to retract towards the junction of the muscle and tendon. The purpose of tendon release is to identify and surgically remove (resect) the area producing symptoms while protecting the normal surrounding tissues and their attachments. Tendon release may also involve removal of unhealthy surrounding soft tissues or bone to promote an improved healing. Tendon release is commonly done to relieve tightened or shortened muscles or decrease friction irritation. Sometimes the tendon is re-routed (transposed) to maintain muscle function.

It is common for kids that have had selective dorsal rhizotomy surgery to need this additional surgical procedure to relieve limited motion in their joints. At James' 1 year sdr follow Dr. Park told us that he believed James would need this surgery, but we all agreed to try and see if a year of stretching and PT would allow us to avoid it. It was a long shot but we tried it anyway. Dr Dobb's, pediatric orthopedic surgeon, uses a minimally invasive procedure to lengthen the tendons called PERC. This allows the muscle to return to its normal length and enables the joint to straighten. The most common tendons that need lengthening are the hamstring and/or heel cords. They will be also looking at James calf muscle and it is possible that it will be released as well.

The lengthening is done in the operating room through small incisions where a controlled lengthening is performed. No casting is required, which is awesome news. The older version of tendon release require long term casting. Now it is still possible that they will not be able to release what they need to just with the PERC procedure and they might have to do a tradition release as well. That wont be known until we get to St. Louis and see Dr. Dobs. Most kids begin physical therapy the day after surgery. Post-operative bracing is used for standing and advancing with walking. The size of the brace decreases as James get stronger.

Now the everyday reasons that James needs this surgery. James' stroke caused his CP, and because he could not move and develop normally his hamstrings and tendons weren't stretched like other kids would have been in normal everyday movement. After his SDR his muscles were able to moved but his tendons were shorter than they should be and limited his movement. We have stretched and stretched but just cant make up the gap that is needed for a more normal walking pattern. Yes, there are some con's to the surgery. James will be set back a little but in his rehab but we believe that will be temporary and short-lived. We have gotten the opinions from several different physical therapist and they don't all agree but we have decided that this is what is best for James and our family.

Our local ortho does releases, but we feel that he is not experienced enough for children that have also had the SDR. I trust St. Louis and the extensive experience and research they have with kids like James. Especially Dr. Park. Lets just say that if Dr. Park asked me to stand on my head and spin and sing Dixie, I would be clear my throat and start spinning! That might sound really extreme to most of you but if you had seen your child's life change by God's guidance and Dr. Park's hands you would understand. so if he put his trust in Dr. Dobb's so do I. That certainly doesn't relieve my worry and anxiety over my son having another surgery. Cause I could right a book on that right now but I am trying to keep all that under control until after Christmas. So there ya go. We are headed up to St. Louis on the 1st but his surgery isn't until the 5th.

*UPDATED 12/22/11* There are specific prayer requests that I would like to ask of my prayer warriors out there.
1. Our hotel / Ronald McDonald housing
2. Good Pain management post op
3. James to be calm and fear free during his hospital stay
4. Safe Travels to and from St. Louis

A 5 second post for the best 5 seconds of my life

2011-11-16T15:55:00.000-08:00

About an hour ago James stood for 5 seconds in our living room. I never thought that time could stop for just 5 simple seconds. I feel like God knew that I needed some encouragement and to be shown just a hint of the plan.

James 2011 SDR Progress.wmv

2011-11-08T07:49:00.000-08:00

I was going through some old videos of James when I got my new cellphone. and I put them all together really for myself to be reminded just houw thankful I should be. See sometimes I forget just how far god has brought us in the journey with James. Seeing his progress over the years in vidoes reminds me just how blessed we have been. So I wanted to share his video story. I would love it if you shared this with your firends on facebook or your blogs. I know that as a mom of a child with special needs I am always serching for someone that understands and maybe seeing this video will inspire another mom to see the blessings in their lives as well.

Birthday Pictures

2011-10-09T18:54:00.000-07:00

Just wanted to be a bragging mommy for a bit. I had James' 4 year pictures done by a photographer friend and I am so in love with the sneak peeks she has just shared with me. I had to share them.

THIS one is my favorite of all of these. I LOVE images where James is standing and here I just think this captures his personality. So cool and cute and I just want to eat him up!!

Happy 4th Birthday James Patrick

2011-10-08T13:46:00.000-07:00

Dear James,

Today you turn 4 years old and I just don't know where all the time has gone. It truly seems like yesterday I watched as the rushed you from the OR and in to the NICU. I go to see your squished up little face for 2 seconds and I touched your little finger. I would be 7 whole days before they would let me touch or hold you again. But it was well worth the wait. You are growing into such an amazing child. Everyday it seems like you say the funniest thing I have ever heard. I swear you are going to be a comedian when you grown up, and I promise to be in the front row laughing as hard as anyone.

Right now you are really into the TV show called WIPEOUT, but you call it the Fall Down Show. Everyday after school you watch it while you are having your snack. We sit and snuggle on the big green chair and laugh at all the silly people. We are even having a WipeOut themed birthday party for you this year. How I cherish those moments. You are so affectionate and I hope that continues as you grow. Right now you are also all about pretending to be a chef like your daddy. you love to play restaurant and doctor. I think I have had about 4 broken legs and you always fixed them with your magic kisses for me and then cooked me a get better dinner. Your favorite foods are goldfish, grilled cheese sandwiches and chocolate pudding. You HATE jello! At school you are so very smart. You know all your letters, letter sounds, shapes and colors. you teacher tells me that when she is working with you she gets distracted because you like to kiss her hand and tell her that you love her. You are such a charmer.

James, This year I have watched God work miracles in your body. Your hips has been 50% out of socket and we were told that they would need surgery. But God choose to heal your hips and at your last hip xray they were perfectly aligned. I know that life holds extra challenges for you son, but please never forget that you are in God's hand and He has a higher purpose for you. It is my prayer that your heart will always be tender to His word and guidance. I dont know why God choose us for this road and life, but I do know that you are up for the challenge. Along with what the world might see as a disadvantage, God sees it as a way to further His kingdom. I dont yet know what that path is going to look like but I know you will travel it with the determination and strength that I see in you everyday even at this young age of 4.

I love you son. More than I ever knew that I could love another human being. You are the child that I spent so many nights on my knees praying for. You are literally the answer to my prayers and the glue that holds the pieces of my broken heart together. You are perfectly and wonderfully made and I am so proud to be called your mommy. Happy 4th birthday to my Sweet Baby James.

Been a long time...

2011-09-09T07:43:00.000-07:00

Hi everyone! I know it has been a long while since I have sat down and made a post. I have started several but always ended up deleting them never really knowing what to say. so I will start with James and see how this one goes :-)

James is really doing great! He is growing so fast and well. Time is just excaping from me so fast with him. Everyday he says new things and I am always amazed. We had a beautiful miracle medical report a few weeks back. James' hip x-rays showed that his hips were perfectly normal. I shared this on facebook because I was so excited at this healing. But I forgot that I have special mommy friends on my page that have children that their hips are a major issue. I got about 3 emails saying how insensitive I was for posting about James hips :-(

He is doing really well in school as well. This year we are requiring him to use only his walker and his wheelchair is not an option. This has been a big adjustment for him and his teachers but everyone has adjusted well. We have seen a BIG difference in his walking due to this. He is faster and taking but bigger steps.

He is just so funny! He is always saying and doing silly things that just crack me up. He is still in love with Blues clues but his new favorite show is Wipeout. But he calls it the "Fall Down Show" he would sit a watch that show all day if we let him. His favorite thing to do is to watch it with his Daddy because they act out what it going on. It is really funny.

Josh and I have had a rough few months emotionally. We haven't really shared with too many this but we experienced another miscarriage. It has been really difficult on my physically because this was a pregnancy that they believe was in the tube as well. And took a VERY long time to resolve physically. It has been a very difficult process, but we are finally back on track. I have really struggled with this m/c because it took me so long to be ready to try again for another child after James. Having so many friends and people close to me pregnant doesn't always make it easier. And being a newborn photographer can be an extra sting sometime but really that has helped me more than anything. Cause I get to be reminded what I am striving for. We are going back to our fertility doctor and back on the medications to help. Those medications will make ya a little more sensitive to things as well but I have tried to keep my sanity.

Josh's work is going well. He received a promotion last week and finally go the recognition that he has deserved for ...well frankly his whole life. I am so proud of the husband, man and father that he is for us. His childhood best friend killed himself last week and that has been hard on him. He and I have both struggled with the anger that suicide brings to those left behind. James has been the hardest hit and we just dont understand how a man could look at his beautiful family and choose to leave them. I just dont understand how you could do that to your child. If there is one positive to take from such a sad and terrible situation, I have seen what a strong man my husband is. And how I am so proud to be his wife. I think those are the highlights. James will be having another surgery in Jan so when we know more I will update about that soon as well.

Finally something to say..

2011-07-07T14:24:00.000-07:00

I have been a little out of the blogging world lately. I come and read all my favorite blogs but when I see my blog on my dashboard. I just dont know what to talk about. James is doing well over all. I find it difficult to talk about my worries about James' progress. I am so very proud of him and all that he has accomplished but he does have such a very long way to go, and my fears that he will never meet the goals we dream for him start to creep in. That is pretty much where I am right now. It sort of feels like a holding pattern.

We took a break from formal in office PT. I just needed to feel like he was getting to be a "normal" kid. But I am learning that what I grew up thinking is normal, just isnt the normal that I am going to get to have in my life. God just has other plans for us. I cant lie and say that I am happy about that. I sometimes spend my quite times with God crying and screaming to the heavens my fears and whys. I feel so blessed that James is even with us here on earth when we were told that would happen, but I still grieve what I thought his life would be. I wonder if that will ever pass? Will I ever have a peace about James' Cerebral Palsy? I dont know but everyday I wake up I pray to God that he grants me peace for today.

I am so grateful for the friends in my life. They are always to sweet a willing to make sure activities that James is invited to he will be able to participate. I know that at times they just wish everything wasn't such a big production when we are involved. I do too, trust me. I hate having to say no to activities, but I have learned what I can handle and what I just cant.

James is having a few growing pains right now. His hamstrings and heel cords are just way too tight. It is causing him pain and causing him to act out in his behavior as well. As a parent it is difficult to discipline for behavior problems when I know that my child is in pain. I am grumpy when I am in pain too, but where is the line. Where do I stop making excuses for the behavior and just deal with it? This is the on going conversation in out household right now. I am torn between knowing how I WANT to discipline but feeling like I cant because like everything else we have to tweak our want- tos in our life. Dont get me wrong James is a joy to be around. He is loving and friendly but when it is bad it is pretty bad. And I am loosing the support that I used to have. In public I feel every eye on me, when I am seen correcting my "disabled" child. I ever have people scoff at me. And lately even at extended families homes we deal with questioning of our discipline plan. It is just difficult to do what we know is best because we live with it everyday and feel like we have to explain our choices to everyone.

But, life isnt all worries. James has been talking up a storm lately. He is always saying the FUNNIEST things. He wants us to read everything he sees to him. I love how inquisitive he is about the world around him. His favorite show right now is WIPEOUT or as he calls it "The fall down show" He loves for all three of us to sit on the couch and for him to bounce back and forth between us as his daddy and I make fall down sounds. I took him down to Birmingham for a follow up PT visit and his PT thought that he was doing great. She said that he seemed stronger and she felt he would do wonderful this school year. We do have some very big decisions to make regarding his heel cords and how tight they are. Looks like he is due for yet another surgery. But that will be another post for another day. Here are some of his latest pictures

May

2011-05-31T20:37:00.000-07:00

Oh May! Here you are again :-) I am so thankful to be here on this earth with my son that God has allowed me to raise. But parts of my heart are in heaven. So I have been reading a lot through Psalms. I find that really lifts my spirits and helps me to see the beauty and joy that there is here on earth. I truly have been blessed and I know that some in our situation dont understand that. I guess on the surface it is strange to say that I am blessed because I have a son with special needs. But it is true. Yes, I dont always like how the world see James and I dont like how his body can cause him pain at times. But there are many more blessings that there are woes.

This week God allowed me to stop and remember one of those blessings. I bough James little sprinkler. I was hoping that he wold be able to use his walker in the yard and play in the water. That didnt happen but I am sure by the end of the summer it will. What did happen was a moment that I will never forget. I pick James up and proceeded to run through the sprinkler with him ( in my clothes). The giggles that I cold feel from his little body in my arms were really beautiful. We played for an hour until I literally had to sit with him in the mud we had made in the yard and just laugh.

And in that moment I thought about what a "typical" life would have been like. I would have probably missed the joy of running like a 6 year old in the sprinkler because I would have been letting James play as I read a magazine or something. But instead I was given a gift. The gift of being able to play with me son in a way that most parents will never get to experience. I am thankful for that

This time Last year...

2011-05-18T13:16:00.000-07:00

I made this post. I remember those feelings of fear. And look at James today. Today I watched him walked from a parking lot into the hospital to see our friends brand new baby sister. No wheelchair, no stroller. Just James walking. What will I say this time NEXT year? How will this new normal change us forever in the year to come.Josh and I are in the middle of making some very big decisions for our family. Your prayers are greatly appreciated. I find that is this is why I love blogging because my heart is right there staring at me on the computer screen. I can see how far we have come from this time LAST year......

~We are 21 days away from having out lives change forever. 21 days until I allow a neurosurgeon to open up my son's spine and cut nerves.....How do I wrap my head around this? We have had our big fundraiser and that helped keep my mind off the surgery but now all I have is time to keep me busy and it isn't my friend. I have struggled with doubt and confusion over this surgery. I felt so confident about our decision when the surgery we 6 months away, but now that it is a short 21 days away the fear and doubt are keeping me up at night.

Last night I woke up at 3am and was gripped with utter fear. My mind was an enemy that I could not get away from. Every time I put James to bed I think to myself " Enjoy this moment because I might not get anymore" I look at his little smile during the day and think " How will I ever breath again if I cant see that fact anymore"

I know that God is in control but my fear of loosing the 1 child God has allowed me to raise here on this earth is controlling me right now. I don't really know how to escape from its grasp. I have even thought about cancelling the surgery. I of course didn't but because my head knows this is the best thing for James' future. I just cant seem to control this fear and pure terror of loosing James. Right now I am listening to him in his room name everything he can see just to try and keep himself awake during nap time, and the sound of his voice is literally what I dreamt about before he was born.

I am also so afraid of seeing him hooked up to machines and tubes coming out of him. When we brought him home from the NICU I had hoped that I would never have to seen tubes and vents and IVs ever again but here we are. My head knows that it isn't like the first time but my heart worries. I worry about the moment I turn him over to the nurses and to go into the OR. Will he cry, be scared? Will my get physically ill like I do when I think about that moment.

What about when he wakes up? Will I be able to comfort him if he is in pain. How bad will his pain be and will they be able to manage it quickly. Oh so many thoughts are happening to me just 21 days out.

Will you please pray for this Mommy's heart, and that I will be able to be strong for James. I want ease his fears but I cant control my own. Please pray that God will show me His peace. And MOST importantly, please pray for Dr. Park. Pray that he is well and that in these next 21 days he will healthy and that all the nurses that will touch my son will be rested and well.~

Transitions in Life

2011-05-13T13:59:00.000-07:00

This post is going to be like my Momma veggie soup. Its going to have a little bit of everything in it. We are home from Birmingham and James is doing GREAT! He has gone back to school and we have decided to not take his wheelchair to school with him. This was a really big decision because it means that James is responsible for all of his own movements. It also means that we put a LOT of trust in James teachers to give him the support and time that he needs to be successful and not frustrated with his new walking abilities. But I am proud to say he is doing GREAT! His teacher has told me that she let him leave a few minutes early ( with his Aid of course) and he walks where he needs to go. Of course what 3 year old wants to have to leave the playground before all of his other classmates!!?? So there are still a few age appropriate hills to climb. I know that will come naturally with time. This time last year we were just excited that he could even stand up in his walker for a few minutes. He has come so very far and it is thanks to these ladies pictured below helping me create goals for James at school! On the Right is James' Pre-K teacher Mrs. Trish and to the Left is the classroom Aid teacher Mrs. Dezzy

Sometime transitions are so very hard. We are praying very hard that James' teacher Mrs. Trish is able to come back to the Pre-K program next year. It all depends on the numbers of student in the program and if they allow the school to keep that teaching unit. I just cant say enough about house much we love Mrs. Trish. She has loved on James in a way that gave him appropriate boundaries and limits. She also let James be James. He has grown so much under her care. I thought we had everything worked out so that James would be able to stay in her class for another Pre-K year . But red tape and the bottom line of the school system are yet again affecting how my son develops. I have let my voice be known but I know that money is the bottom line and if the school system ( as in the Central Office not the Local school office) has to choose saving a few extra bucks over the good of students. I am sad to say this, but they will choose the bottom line. SURE they will have a wonderfully politically correct reason for it but they arent in the classroom and they dont see how it really affects the kids. But I am going to pray everyday that soft heart prevail and that kids are put before budgets! Will you please join me in this prayer request? James and many kids like him NEED more teachers like Mrs. Trish and we want to keep her as long as we can!

Our little family also experienced a loss this week. Our beautiful, sweet and beloved Lab names Sushi passed away during surgery to removed what we thought was an obstruction. It turned out to be that her intestines had twisted. I am told that this is something that can happen in large chested dogs like Labs. We we not expecting this because she was a young and healthy Lab. Sushi and I had a very special bond. She protected me from a stranger that was trying to rob our old house one night while I was alone, and she literally chased him down the road as he yelled for me to help! haha She was James wrestling partner as well as a place for James to rest his swollen legs at night

She was Playful and Silly

I could talk to her like a friend, and she always knew just how to make me feel better.

I loved that dog more than I have ever loved an animal and if I am honest, I loved her more than I loved some people. She "got" me. She was my sense of security when Josh worked long hours. She and I would snuggle up and watch Tv or she would just keep my feet warm.

She celebrated with us in each of James milestones. She was always with us or at least in the background watching quietly.

She wasnt content to just wag her tail. She loved us so much she wagged her whole body. I miss her kind eyes and shiny coat so bad I can hardly stand it. I have always been an animal lover and gotten very close to my animals. Sushi was different because she was apart of MY family. My son loved her so much and so did my husband. We buried her at my mother's house just in case we move. Josh and I just stood at her grave and cried. We hadnt done that in a very long time and it was sort of good for us to get that out again. so I thank Sushi for that moment she gave us. Seeing our son grieve has been the most difficult part of it. He misses her very badly. He has asked me every night to please drive to heaven and bring Sushi home. Dont you wish it worked that way. I certainly dont know how the whole pets in heaven things works on a theological stand point, but I do believe that when God created dogs he knew the bond we would develop. So I like to think He will give us the joy of animals in heaven as well. I know that Sushi gave us a lot of joy here on earth and I am thankful for that. Sushi is already dearly missed but I know that I will remember her always and the unconditional love she gave to me while she was apart of our family. ~Thank you dear God for creating such beautiful animals that we can share this earth with.

We decided that we didnt want to wait to get another dog. James was very sad and honestly it helps me to have another furry face to love on too. So we adopted a 17 week old puppy from the humane society yesterday. She is a Lab and Border Collie mix.

We have named her "Manga" after the Japanese Black and White comic books. She is a sweet little puppy, a little shy but I am sure James will work that out of her. We havent had a puppy in such a long time. I had forgotten what that was like, but I am happy with her. I hope she fits into our family well. She is really starting to to work her way into my heart as well. She is very smart and we hope to be able to train her to help James like we did with Sushi. I know she will create her own special memories with our family over the years.

Happy Mother' day

2011-05-08T12:08:00.000-07:00

No matter if your children and here on earth or waiting for you in heaven, or like me both. being a mother is a wonderful gift that I cherish. I wish all Mother's a peaceful and wonderful day. Happy Mother's day

Just 1 more..

2011-05-04T19:20:00.000-07:00

Well tomorrow will be our last Long camp day and then Friday we have a 1 hour eval. After the eval, we are headed home! I am ready to get back to our routine and my comfy bed! As a side bar, if you ever think about buying a sleep number bed......quickly slap yourself in the face and be glad you didnt buy one!!

I am going to post the before and after Evals from this camp. Even before I see the "official" results I have been witness to them. James came into camp pretty much dragging his toes as he walked in his walker and his left foot was turning in very badly. After these intensive 3 weeks we can barely see the turning in at all. Now that doesnt mean the issue is gone for good. I am not that naive, but it DOES mean that the bone is still straight and with proper stretching we can get those muscle to do what they are supposed to do.

This time has also allowed me to do a little thinking about my own healthy and physical well being. I am asking James to do so much and I am asking very little of myself. I am of course talking about requiring my own self to have will power and take control of my own body. I have to do this. I have been walking James to PT instead of the car and that has felt great. Being that we are starting over since our Fridge and freezer had to be totally cleaned out, this is a great opportunity for our whole family to join James in his daily exercises. Josh and I have been talking about it and we really need to take the plunge and go all in. So when I get home on Friday I am joining the gym that is 5 min from my house.

There I said it!!! It is now out in the bloggy land and I hope that you will hold me accountable. In fact I am begging you to hold me accountable. I have had to start taking BP meds because I have let myself go! So these 3 weeks have been a game changer for our whole family

John 13:7- Tornado Outbreak

2011-05-03T15:00:00.000-07:00

Jesus answered him, What I do thou knowest not now; but thou shalt understand hereafter. ~ John 13:7

This week devastation struck my state. It came in the form of over 300 confirmed Tornado in our State of Alabama alone. Here in Alabama tornado are a part of life in. We usually have to duck for cover once or twice a season. This however was different. The outbreak was so wide all over the state. When you felt safe from one you another was right behind it bigger than the first. I was away from home with James here in Birmingham and the rest of my family were in different parts of the state.

I spent most of my day watching the weather. Starting at 5 am when the first tornado sirens went off. I grabbed James and ran down stairs. The storm went North of us but more to come. All day I watch tornado form and hit this state that I love. So many friends lost everything and I mean everything! The picture above is of a friend's home in Huntsville. It was a beautiful brick 2 story home in a neighborhood that as you can see is gone!

At around 5pm we watched live on TV a tornado form in Tuscaloosa. It ripped through the town and was headed for us. the Ronald McDonald house put all the residence in a central hallway. We sat a waited for it to hit. That is the worst part....just waiting for everything to break loose. We waited and I watched the live streaming of the tornado on my smart phone. The Weatherman kept yelling at us to take cover now! Already there!!! And then we heard the tell tell sound of the Tornado. It sounds like a train coming right at you. The building felt like it was breathing. I took James and pushed him under a desk and them laid on top of him. All I could think as I watch my phone screen was " How am I going to hold on to him? How will we survive something that big?" so many more thoughts went through my head but Wheels on the Bus came out of my mouth. James and the other kids were so scared so I started singing. What felt like and eternity was only a few minutes. When we were given the all clear to come out, we did. I expected to see damage, but we didnt. We learned that the tornado touched down 4 blocks from us and what we heard was a satellite tornado that never touched the ground in the downtown area. Thank you Jesus!

But as we were happy that we were safe, we quickly realize that many were not. Over 300 people so far have been confirmed dead. The hospital here has had a steady stream of ambulances coming in. They have refrigerator trucks lined outside the hospital because the morgues are so full. Children that were blown away from their mother's arms and were found have been given a number until their families are found. Many havent been claimed yet. A friend of a friend had just given birth 7 weeks ago and she was killed saving the life of her 7 weeks old son. Families without homes. Our entire county without power. Devastation everywhere.

Please pray for my State and the many families that lost so much. My entire family is safe and our homes were spared.

This is what Hardwork looks like warning video is hard to watch

2011-04-26T20:51:00.000-07:00

Effort only fully releases its reward after a person refuses to quit. ~Napoleon Hill

That quote is perfect for James. He is the hardest working kid
I know. In fact he is the hardest working human I know. I know adults that when things get tough they are gone. But not my James. Is has endured so much his short 3 years. I know what we have gone through in our journey doesn't compare to some families experiences or other blogs I read. We are blessed in so many ways with the abilities that James has and I am so very grateful. These kids are amazing!!

James impressed me today and also broke my heart in to a million pieces. PT started good. We had a few "3 year old moments" but nothing that everyone goes through. He was working hard and doing his stretches. communication is sometimes an issue for James. He knows what he wants to say but sometimes during PT when it is difficult or he is frustrated the words just don't come fast enough. What sometimes does come out is frustrated screams. But he always over comes it and we are working with him to be able to access the words he needs when he needs them. This is a video of some of James' beginning of PT. You can also see his little camp buddy working just as hard! ( I got permission from his mother to video him as well 0

The determination in this kids is a sight to behold. Such and sight that it shames me in my own willingness to say something is just too hard. I wish that I have a fraction of James determination

But sometimes it breaks my heart. Sometimes I want to grab James up and run as fast and I can and as far as I can from what is hurting him. My Mommy heart wants to protect him from the pain that his body is creating. I want to FIX it for him. But I know that I cant. I have to allow him to work through the pain and frustration so that he can come out the other side an independent and functioning person. All I can do is give him the tools to succeed and be there to comfort and catch him when he falls. But also there to pick him back up again and offer the encouragement to try again.. As I was watching James struggle today God spoke to my heart. Isnt this exactly what God does for us. I am sure He wants to "fix" all of our troubles and spare us from the pain of this worlds as well. The love that I have for my son is only but a grain of sand compared to how God loves His children. How I grieve him when I struggle but He is always there to pick me back up and offer encouragement to keep trying again.

THAT is why I was lead to take this quick video of James while he was struggling. It is very hard to watch so just know that it will break your heart because it does mine. But I am happy to say that he finished his part and made it through to the other side and stood TOTALLY INDEPENDENT for 2 seconds! No walker, canes or helping hands. JUST James. James was very proud of himself when he reached his goal (the play kitchen) and told me over and over again that he made it.

I LOVE the number 5!

2011-04-25T19:17:00.000-07:00

Yep! That is right 5 is my new favorite number. I like the way it sounds. I think it is beautiful. But my absolute favorite part about the number 5 is counting to its beautiful name as I watch the physical therapist take her protective hands off my sons canes. We all hold our breath and start to count the unassisted steps James is taking with his canes!!! I thought that when I said 1 my heart was going to burst out of my chest, but 5??? I was on cloud nine.

James gave a sheepish '" Whoa!" and proceeded to take step after beautiful step. Now for those of you with typically developing children may not realize what all it takes for a step with a cane. First you have to understand that James doesn't really always know where he is in space, so he is working on keeping his balance. Then he has to be able to shift his weight WHILE keeping his balance. After that he must move the left cane then his rightt foot and then switch feet. All of this at the same time AND keep his legs strong and upright. It is very difficult and something that you and I do as easy as breathing in and out. James has to think about every motion and plan it out. So 5 is WONDERFUL. And of course I forgot my phone and/or camera! But I am sort of glad because I really got to soak in the moment.

I know I was a silly person calling everyone to talk about it, and some were off to another topic before I finished my sentence hardly but in our life this was BIG! So I think I posted it everywhere I could and text everyone I could think of ! LOL

The best part about it is that this time last year we were one month away from James having the SDR surgery. I was scared to death and even thought about cancelling the surgery a few time. James couldn't sit up well by himself he could barely hold himself in his walker independently and his little legs scissored so badly that he would just step on himself and never go anywhere.

Not today! Today almost 11 months post SDR James is going everywhere he needs to go and talking to his peers eye to eye. Today was a good day!

I wonder?

2011-04-24T21:18:00.000-07:00

Do you ever wonder if people listen to their own words that come out of their mouths? I sure do. I wonder frequently if they hear themselves and wish they could shove those words back inside. but are just too embarrassed to say "oops that didnt sound right". Maybe they realize, but figure they are out now so just go with it? Hummm???

This really isnt directed at one particular person but instead a collage of several experiences I have had. I find myself feeling embarrassed for the other person most of the time. I see that flash across their face when the wonder if the word "handicap" will offend me, Or as they reach a part of the sentence, and struggle with what word to use next to describe my son. I just stand there. Inside I want to share our whole life story. How James is a miracle even to be here at all. How we went through so many years of infertility treatments and about the children aches to hold but are waiting for us in heaven. I know that will only make things worse because then they REALLY dont know what to say. So instead I just smile and usually nod as they label my son, ask if he is smart, or offer some advice about how their aunt twice removed had a "handicapped" child. *Sigh*

My favorite is when someone really wants to know what is "wrong" with James. Some come out and just ask that exact question, but most dance around the question in hopes that I will let it slip. Other just stare. I have even had people tell me that James' condition is my fault because I must have not gotten good pre-natal care. If they only knew.

How to handle those looks or words even if well meaning? The quick answer is I dont know. God has some work to do with me in this area. All I do know is that I pray for God to give me wisdom to use this journey He has set us on as a way to further his Kingdom. My fear is that the guilt Satan tries to tie me down with is keeping me from seeing the openings to witness that God is giving me. I know that James has been given to Josh and I to raise for a reason. People are drawn to him where ever we go. I watched James walk into church this morning and as I saw everyone staring at him in his walker I saw it from fresher eyes. The look of Joy they had to see this little guy work so hard to walk and have such determination made me re evaluate my responses. So tonight my prayer is that tomorrow God will help me to be strong. To hold my tounge so that He can do work through me.

Not exactly an Easter post, I guess, but this is what is on my heart tonight. I am making more of an effort to get back to blogging my heart and not just updates and things I" think" people want to hear about.

Camp Snap shot of our Camp day * Picture Packed*

2011-04-22T18:38:00.000-07:00

Thank you for everyone that made a comment to let me know you are out there. I really enjoy blogging about James and his journey post SDR and just our life frankly but figured that I if no one was reading it I would just go back to my diary or the personal family blog. BUT since there are those that do check and read my ramblings I will continue :-)

I especially love hearing that there are other Mom's of kiddos with CP. And for those of you considering the SDR please feel free to send me an email with any questions maryellen@lighthouselifeinpictures.com It was the BEST decision we ever made for James and we would do it all over again in a heartbeat!

Now on to bigger and better topics like WE CAME HOME....for the weekend! It was so good to see my house, bed, recliner, and dog! I missed that lab sooooo badly! Haven't seen hubby yet but he will top the list once I do :-) It also feels good to be in front of a computer instead of blogging on my phone in the RMHouse.

People have been asking about the Adeli suit and and the program that we are in, so I thought I would post some close up shots and talk a little bit about the program. Children's Hospital in Birmingham one of the very few places that are certified and trained to use the Adeli suit. I researched a few other programs but I liked Birmingham because they also incorporated los of other PT practices into the program and it is a very well rounded program . They use traditional PT with a little Conductive Education as well as the Adeli program. And I like that! This picture below is James getting all suited up. The suit is very tight and gives a lot of sustained pressure which James doesn't always deal very with. You can see all the bungees that go every direction. They are specially placed just for James and his physical needs. For example James' left foot turns inward and so they place tighter bungees on that leg to make his leg straight. The goals is to align the body perfectly and do repetitive PT to retrain the brain to the correct movements

James is NOT a happy boy right here. The first 10 min in the suit for James is really rough. His PT tells me that kids react one way or the other. Either they love the pressure or they hate it. James hates it! I knew he would because he never likes harnesses and belts that are placed on him. To help him with that they use Vital Sounds integrated listening. You can see the headphones here. These are special modulated music CDs that provide a calming sensory input, and James responds well to it.

See :-) This is after that first 10 mins when James is able to work thru the sensory issues that he has and focus on PT. Not sure if you can tell here but there are bungees at the ends of James toes that pull his heel cord these really made a big difference in his steps.

The other aspects of the camp are more traditional PT exercises just done in an intensive way. James has 3 solid hours of PT and 1 hour of OT everyday. The program is very intensive and by the end of the day James is exhausted. Here is a typical schedule of event for one day of camp

8:30-9:00- Heat Pads, Stretching and Massage time

9:00- 10:00 - Strengthening and Core Activities and Big Ball Exercises

10:00- 10:15 Snack
10:15- 11:15- Adeli Suit, Treadmill and Cage work or walking

11:15-11:30 Cool down and Walking to OT department
11:30- 12:30 OT Hour

12:30 End of Camp day!

Time to REST and gear up for the next day

Thinking about letting the Blog go??

2011-04-21T20:43:00.000-07:00

I dont think there is anyone that reads this anymore? It seems that everyone is happy with the quick updates on James facebook page and dont really care to get involved in the details. So I am thinking about stopping this blog all together and going back to my personal family blog. I havent had anyone comment here in over a month.

BooBoos and Crashes

2011-04-20T12:31:00.000-07:00

So far this Camp has had its share of booboo's! The first day James fell off a bench and hit his lip on his walker. He was with the OT at that time. People just dont realize how quickly he can fall. James is really strong but when he is startled or feels unsteady and starts to fall....he is going down! His tone kicks in and everything is pulled in. You or I would put our hands down to protect ourselves from hitting out face but James can do that yet. His arms draw in and is not pretty! It was a really nasty busted lip too. It even made his nose bleed. But he was such a trooper. Once we got him an ice pack he was ok.

Day #2's fall still has me shaken up!! James was put into a mobile prone stander similar to this one

Except James' stander was a older model that does not have that larger Red bar holding it up. But instead a smaller bar. I now know why they have improved this model because yesterday the weld that was hold James up broke and everything cam crashing down with James strapped inside of it. It was a VERY scary moment for everyone. Especially James! All I could think was he had broken his back because of the way he was bent. But he was only in the heap of metal for a second because I reached down and started pulling him out before I could even think about what just happened. He has some bruises on his back as you can see a little bit here

You can see his SDR surgery scar and that the bruising is mainly below that , thank goodness! But there is a larger bruise below his scar where the pad that held him in the stander was. I sent this and another picture to Dr. Park and they told me that as long as the swelling goes down, he his playing fine , that they arent worried. So I feel better about that. And he IS playing just fine seems ok. The only other side affect from the fall is that he is pretty scared today. He is afraid to be in his walker very much but I hope that will fade soon! We shall see when we go back tomorrow for Camp day #3. Let pray that all the booboos are OVER for the duration of camp!

May Camp Day #2 LOTS of Pictures

2011-04-19T13:16:00.000-07:00

I just wanted to share a BIG thank you to North Park Baptist for this sweet goodie bag waiting for us when we arrived Sunday. It really made my day!

Camp day #2!! James and Ms. Corinne looking at the schedule or events for today. James is like his Mommy. We like to know the plan before jumping into anything.

Ok THIS is the one of the "cages" you can see all the bungee cords hanging from it. What they do here is James will stand in the middle and they will connect bungees to his Suit. This allows him to be supported and the PT 's hand freedom so work on positions. It also only takes some of the weight from James and makes him hold 90% of himself up

James has been doing some timed walking. Today he had to do it on an incline. You can see he is getting a little help from Ms. Corrine but he did most of the distance by himself. His little legs were just shaking at the end of it

James is with Ms. Patrice here. She is actually a retired PT that has come back to do the evaluations. And she is AWESOME!! Basically if you combine your perfect idea of a grandmother with an Awesome PT you get Patrice!! James loved her and did everything she asked without one complaint.

At the Ronald McDonald house were we are staying a group from a local church came and gave us some dinner music. James loved the harp.....or maybe he just loved the young ladies playing the harp!

James thought this was really fun. It is like a standing bike. He was giggling the whole time! He is actually working on reciprocal movement here but shhhhhh dont tell him that!

James and Isaiah getting their muscles all warmed up as they watch Bob the Builder.

The next 2 images are James and Isaiah playing a relay game with each other. James was really fast!

He isnt falling here I promise! He is working on his lateral muscles by reach for the floor and then touching Ms. Corrine's head.

And here is the Adeli Suit! Click HERE for all the technical info on the suit and what exactly it does. James just knows he is not a fan as you can see by his face. Poor guy :-( It took about 15 min to get him into the suit, but hopefully it wont be that long since all the bungees are in place now. It is REALLY tight which James doesn't like. We were calling it the Buzz Lightyear suit and after about 10 min James told us he hate Buzz!

A close up of the suit and a bit of James sad face

But not to fear we ended on a FUN note! James loved the Koala swing and his session with Ms. Kathryn the OT. She did lots of nice relaxing things with James.

Camp Day 1

2011-04-18T20:31:00.000-07:00

It was a great day. Lots of hard work and James and I are both super tired but it was great. As I said last night, I didnt even bring James wheelchair down with us. About 8am I was questioning my decision when I looked at everything I had to bring with us to Camp today. I had James in his bike, his walker, a set of quade canes, my purse and James backpack! It was a lots for the trek, but we did it and I thing the fresh air and motion of the bike really gave James a great warm up. I didnt not make him petal his bike. His feet where strapped in and I was pushing the bike by it handle. I didnt want to tire him out but just get his legs moving for Camp. As I was hiking with everything in toe. I was imagining new inventions for how to creat make shift back pack like carriers for equipment like this.

Once we arrived we walked into the center and there were 3 little 3 year old boy in walker just like James. You would think that we have seent his before as much Pt as we do but we just dont. The kids we see at home are either far less involved than James are far more involved. We dont know any kids that are at James level, so it was really nice to see them. James' face lit up and he instantly wanted to get out of his bike and into his walker with them to play. I was happy to help him do just that!

The camp day started at 830am. Today was mainly evaluations and seeing all what James could do. He was asked to do some timed walking and crawling, and a lot of beachmark tasks. I was happy to see that compared to last time we were at the camp James has really improved over what he could do in my eyes. I dont know the results of the evals until we leave but having seen many I pretty much know what they are scoring. His PT and I talked about my goals for the next 3 weeks. We are going to be focusing a lot on controling his walker and being able to be totally independant in it. As far as walking he is independant in it but he just cant quite turn it for corners and if he hit a wall he cant get himself out of it. We will also be working on that foot that is turning it. The suit will align his body perfectly so the idea is that we will re-train the muscles while he is in the suit.

Speaking of the suit.....the fitting went ok. He tolerated it for the most part. But James HATES putting on clothes much less a really form fitting suit that has about a hundred bungie cords going everywhere. So you can imagine how much he like it. I was proud of him though. He looked at his book and was quite patient for about 10 min of the 30 min process. And for James that is a big deal when it comes to things like this. I hope once we get the suit ON he will be ok with it. One of the OT goals for this camp cycle is to help James tolerate sustained pressure.

The RMDH has been great. Having a nicer and bigger room really has helped this time. A few of the people recognized James from August and were happy to see him. There is a new volunteer that James really likes. I like her too because she like sto take James to the playroom and read book with him while I eat. I REALLY like her a lot!!! Such a big help to have 2 seconds to eat during the day. Of course I can still see James from where I am.

James and I ended our day with a ice cream reward on the playground and several trips down the slide. It was the first time that James and I really played side by side on a playground instead of me taking him to everything. It was a great way to end the day!

Here we go again!

2011-04-17T19:58:00.000-07:00

James and I have snuggled into the Ronald McDonald house for another round of intensive physical therapy. This time will be a touch different. james will be doing the full spider Program. Which will include the special suit.

He will be doing 3 PT days and 2 OT days this time. Each day will be 4 hour sessions. I am excited to see what great new milestones he will achieve this time. Remember that last August he started the program not even able to hold himself up in his walker independantly and ended the 3 weeks taking independant steps in it. So now that he can walk independantly in his walker I cant wait to see what he will be doing at the end of these 3 weeks.

I am going to be twittering about all the fun things during his sessions. So follow us at meandj on twitter.Our romm here at the house is great. It is one of the big family rooms so this time we have room for James equipment AND walking ;-)

I am feeling pretty good afte my hernia surgery. trying to be careful about lifting. Which means James is walking more. Not sure he is a fan but it is really making him stronger. In fact I didnt even bring his wheelchair with us.I felt it would be too much of a crutch for us both so I brought his bike instead. That means James will be petaling to camp every morning as a warm up.

That should do it for tonight. I am blogging with my phone so please excuse the typos .

Just a word

2011-03-30T18:29:00.000-07:00

Well I thought I would post a quick Happy tonight. James and I did home Pt today. And it went GREAT! He did all his exercises with min crying and then he and I played a new game that I pulled out of my brain this morning. I am always trying to get him to take BIG steps and to pick his feet up. So today I cut out some dinosaur feet out of construction paper and place them all around our house. James had to walk around the house and find them and stomp really big on them. He thought this was great. I did several versions of the game all with lots of stomping and loud silly sounds. But the best part about it all was the laughter that filled the house and my heart. It was restoring!!

Hi!

2011-03-29T18:56:00.000-07:00

A friend reminded me today that I have not posted in awhile , so I am going to attempt a post tonight. I havent posted because I feel like all I do is whine on here lol! And I guess I do a lot of the time. But this is my place to let it all down and out. This is my refuge from the "happy face" that I sometimes I have to force on myself. Things have just been pretty difficult and I am struggling to get all those hats in the air.

I want to make a post that shares all that James is doing right now but honestly we have hit a wall with PT. And this wall is very scary to me. We are in the postion of yet again watching other children pass by James in milestones in walking. Other SDR children reaching those milestone and getting news that I so desperatly wanted to hear. I am of course beyond thrilled for their families because they too have worked so very hard to reach these milestone but James and I just cant ever seem to climb this dang wall. We get close and I know that if any kid can do it my James can. I am just tired. I am tired of always fighting and scratching just to just to watch from the sidelines. God what is the plan? Can I just get a glimpse of the playbook?

Why cant it be just a little easy, just for one day. I dont want to cause my son pain everyday anymore. I dont want to stretch his little sweet legs and listen to him scream and telling me that it hurts and "Mommy please stop" I dont want to spend my life in a physical therapy office and I certainly dont want James to spend his childhood there. There HAS to be a balance here. I just HAVE to see some sort of light at the end of this tunnel.

I am 32 years old and I have to have hernia surgery next week because of lifting a wheelchair everyday of my child. That is just not what I thought it was supposed to be and I have to find the balance that God has for me. I am not always the strong Mamma Bear and please know that I love my son just the way he is. I truly do! God has blessed me with a sweet loving child that has more determination that I do. I just have to find my boot strap and start pulling myself out of this pity party. Cause this party SUCKS and doesnt have cake!

In that spirit I will end on a silly James story! I am working with James and trying to teach him how to take his clothes on and off. So this night he got the bottom ofhis shirt over his head and it got stuck ( and like any good mother I ran for my cell phone to take a pictures) I snapped a picture and as I did James sneezed. He always thinks that is funny but this time he really was laughing. I asked what was so funny and He said " My boogers bounced back in my nose" :-) Silly Goose!

Blah!

2011-03-07T14:48:00.000-08:00

Today is just a blah of a day. Not really any reason for it to be I am just feeling the weight of several things on me today. A dear friend of mine just lost her baby boy that was stillborn at 41 weeks of pregancy. I was called to do his pictures for Now I Lay Me Down to Sleep and ever since then I have just been so burrdened for them. Last night I went grocery shopping and as I walked through the baby section to get pull ups for James I was overcome with grief. I havent experienced that in a very long time and it hit me out of let field. I think knowing that I need to go and edit the images for the family is weighing on me. I just worry about giving the images to them and causing them more pain.

That is not something that I usually worry about. Usually I know that any images I can offer will be loved and cherished but since these are such close family friends I am just so worried about not upholding my duty. So yeah, it is just a blah day today

9 months ago this week.. LOTS of pictures

2011-03-04T09:26:00.000-08:00

It has been 9 months this week since James SDR surgery so you know what that means.....you, it is time for a update. Just in case you were wondering as I type that I hear the dot d.d.d.d.d.d dot sound of a new update in my head. Does that make me strange? I'm sure it does, oh well

As of last update James had been using his walker more but was experiencing some frustrations with his foot turning in on him and also just frustrations of PT in general. I am happy to say that I have some pretty exciting updates to share. I am just trying to figure out where to start. I guess we will start with some facts.

Physical Therapy Update

James' left foot is still turning in but we have a new nifty piece of equipment called a de-rotation cable that James wears when he walks that helps with that and (fingers crossed) will retrain his muscles to keep his foot straight. It isnt very pretty and can be a pain in the tush to take on and off but I do think it is helping. Here is a pick of all the new equipment and the De-rotation cable is the tan and metal looking thing that is attached to his new braces. You can also see his new braces and shoes. You are looking at a small fortune on tis coffee table so I want it to get as much viewing as possible. Thank goodness for payment plans LOL

In private PT James has seemed to turn a corner with his frustration level and understanding of games. Dont get me wrong he is still very much a 3 year old and like to push those limits. But the crying fits have been drastically reduced. I started doing a new thing with James for his PT. I knew that James likes to have choices and his little life is so limited with PT and being focused on keeping his body loose and learning to walk that I started to have some real worry and guilt about it. SO I brought out my Elem education degree, dusted it off and started to brainstorm ways to help James feel more empowered. And the choice board was born! James therapist and I took pictures of all of the activities that we want James to do in PT ( balls, slide, his canes, the treadmill, etc) and we made little picture cards that had Velcro on the back of them. Each PT session the Pt will choose about 6 activities and stick them on the board. When James gets there HE gets to choose what he does during the session, and when he is tired of one activity we he can tell us he wants to choose something else and then we give him the board. It has been a MIRACLE board. James loves having control over his activities , but the PT and I only give him choices that we want him to do. It is a win win!! And has eased everyone stress level! Below is one of those activities, James loves this one. He gets to stick the little cars up and draw lines to match. Now to James this is a cool matching game but what you are really seeing here is PT and OT at work. The PT is working on strong tall kneeling ( which he is doing amazing at ) and he is also working on being able to reach down and pick up a sticker and bring it back up to the board. On the OT side of things. She is working on correct pencil position and being able to draw certain lines and also matching which help his eye tracking. So lots going on and James just thinks it is a fun game that "he" wanted to do :-) HeHe Tricky Mommy

And here you see our At Home version of the same activity. This is James doing his "chore chart" and cleaning the French door windows. As you can see, we learn the skill in PT but he practices it at home!!

Now here is James doing some more home PT that is just for fun. Riding his bike. Technically it is a therapy bike but James just sees it as a bike. Mommy seeing strength building

And here is our NEWEST fun therapy. Horseback riding!! James loves the horses. He is getting used to being so high up but he is really doing well. My dad got James his very own saddle to use when we go over to his house and practice. But every Sunday James is taking what is called HIPPO therapy. You can check it out HERE to get some more info on what the program does for kids like James

No Here are some of my very favorite pictures of James EVER. They really show just how far he has come in just 9 short months. This is James walking in to the Dollar General store in his walker. Walking in public is a huge milestone. It means that James can talk to everyone and experience the independence that other kids experience at this age. He also loves how everyone talks to him and thinks he is so cute.

And this is just from this week. This is James standing all on his own only using the slide for balance. This is another favorite choice of James' He gets to stand up at the slide and rolls cars down so they can crash into the block buildings. Again this picture is more than meets the eye. You might see a boring picture of James back at a slide. I see 30 mins of standing strength. I see hope that one day James really might be able to break free from equipment!!

Ok now this pictures is really an after picture. James was laying flat on his back and for the first time he sat straight up to sitting without rolling over on his side to help himself. I was on the phone with another SDR mom ( btw her blog about her son Cliff's SDR journey is awesome check it out HERE ) She and I were just chatting about our awesome boys and James just sat right up. I cried and ran right over and took this picture. As you can see James was more concerned with watching his cartoons! LOL

Ok last PT update....sort of! Yes that is James on the potty. But he actually has a Pull up on so I can honestly say that I was NOT taking a picture of my son using the potty! I am sure he will still not like this one when he is grown. Can we say Prom date ammo!! But the reason I took this pic was to talk about our Potty training struggles. When you cant sit up independently you cant really sit on the potty and do what you need to do efficiently. Not something that I ever considered before James. Potty training consisted of lots of tears and frustration because I had to hold James up and on the potty. So I created this little contraption. We call it the Potty Station. It is just a step ladder that I zip tied all the potty training essentials too. They do make adaptive potty seats for CP kids but they are 2500 dollars and tha this is just not something we can do. who could!! Ok so this potty station gives James a place to put his feet and also lean forward so that he can stabilize himself to be able to stay on the potty. I pair it will a potty insert to make it James' booty size and TaDA! We have potty training success :-) the coloring books and things are just for fun. James also gets to put a new sticker ont he ladder each time he goes. AND it gives him a handle so that he can pull to stand and I can wipe and pull his pants up for him. And then we just slide it over to the sink and he turns around to wash his hands. I think I might just apply for a patent on this one ;-)

Now just some fun randomness updates. James is my little social butterfly as you can see. This is a local indoor playground that we go to with friends and he has a great time!

James on the BIG slide!

James and I went shopping and he found a Thinking Chair like in Blues Clues and of course he needed a picture with it! Notice his Little fingers showing you that he is thinking!

Cooking is a BIG deal in this house. Having a Chef for a hubby what would you expect! But at least 3 or 4 times a week James and I bake something and he is getting pretty good at helping. He can now crack and egg by himself. Now waiting for everything to cook still needs a little work ;-)

And when he is not doing the cooking, he is right under my feet in the kitchen with a coloring book telling me how to cook. This is James drawing me a picture of what he wants for dinner! I believe it was a pizza with ice cream on top!

And how do these 2 pictures go together????? Both are VERY rare things to see.

Horseback Riding Lessons

2011-02-21T08:40:00.000-08:00

Last week my facebook feed was FULL of all my mom friends talking about t-ball sign ups. Now I know that 3 is pretty young for children to play t-ball and I certainly agree that some of these parents get WAY to involved with over scheduling their children. But then again who and I to talk. I have the most scheduled life on the planet LOL ( but trust me I wish I didn't have to) Having had grown up with a football coach for a father I have seen some crazy sports moms and dads, and even though I always said I would NEVER be one of those mom. I just never knew that the "option" would be taken away from me. Or that is what satan tried to make me believe.

So instead of whining about what James "cant" do I was going to focus on the sports that James can do and sports that he can be independent in. There are local special needs t-ball league for when he is 5 if that is something he wants to do but the reality is that he will always needs some sort of assistance a sport like that. That is fine of course but I want to expose him to activities that put him on the same level as his peers. James should have to be resigned to always being on the "special" teams. So on a search I went :-)

And I found Therapeutic horseback riding. I had known about it and St. Louis told us it was one of the best therapies for kids post SDR that there are. So I really focused on getting James enrolled. and after a mountain of paperwork....Sunday was his first lesson

James loved it. He got to brush his pony Princess and helped lead her around the paddock to get her ready to ride. When he got on her he spent several minute leaning dow to give her kisses. It was SO sweet. He could barely get started riding for hugging and kissing her. When we asked if he was ready to ride that is when he got nervous. He whined a bit but after about 5 or 6 steps he was telling Princess to "go!" He really had to work all of his muscles to keep balanced on the pony but he did a great job. My Dad and I were on each side to catch him and also to help him push his feet into the saddle. Even thought he just rode about 15 min he was exhausted from the hard work of balancing. It was a great workout and FUN too! I really hope this is something that he loves to do because it is a sport that I can see him doing independently when he gets older. We will be going every Sunday for lessons and I am sure lots of pictures will be forth coming!!

PLAY! Sharon Johnston Playground

2011-02-10T11:57:00.000-08:00

I am very excited about the new playground that will be built this Spring in my local area. For those of you that are on the Jump in for James Facebook site here this post is all the details you were asking for and if not contact me and I hope I can answer them for you. Before I get into too much detail let me tell you about what it is like to take a special needs child to a playground.

When James was diagnosed with PVL- Cerebral Palsy there were many "dream" for James that I had to revise. There were hardships in life that instantly came to my mind, that I knew James would have to face. I knew about the "big" things that raising a child with a disability brought. What I was never prepared for were those little simple joys a mother gets to share with her son. I wasnt prepared for the fact that if my Mom's Club friends called us for a plat date at a local playground, I would have to say no not because I didnt want to go, but because my child wouldnt be able to participate. And they would say they understood but slowly they just stopped calling us for the playdates because it made them uncomfortable to ask if James would be able to go to this playground. Or we would go and all the other mothers are sitting enjoying time chatting with each other and to allow my son to play I have to carry him to each component and hold him up becuase there isnt anything he can do independantly.

When I used to take my nephews and niece to a playground it never occured to me how wide the sidewalk was or what the flooring was like. I never wondered if they had swings for a child that couldnt hold themselves upright to swing on, I never once thought about if a wheelchair could travel the pea-gravel surface to get to a slide. And I would bet that most of you dont think about those things daily either. But I do now. I now have to plan out a playground visit because the closest ADA playground is 45 min from our home. There is a little playground just 30mins that, at least, has a tic tac tow board that James can get himself independantly to but everything else I have to help him with. I certainly dont mind doing that, but think back to the last time you took your child to a playground. Did you carry them too each peice of equipment and hold them up so that they can play, or did you sit with your friends and chat while you watched the kids play independantly. I would like that too.

I never realized that taking my son to a playground would be one of those things that would be taken away from me when they gave us his diagnosis. And I don't think that it should be, so instead of just feeling sorry for ourselves I knew I needed to change it. I feel that ALL playground should be ADA compliant, but that is a post for another day and I have to start small. SO here goes!

I learned about a group that is building a plauground in my area and I thought that getting in on the ground floor would be the best way to make sure kids like my James have a play to play as well. So I signed up to be the Special Needs chairperson. I am not sure if they always understand why I can make all the meetings since I am the only parent with a special needs child or why I am so passionate that some of the equipment that their " typically developing" kids dont play with has to be included BUT they have allowed me to make sure this playground is at least ADA compliant. And I consider that a big victory for our local town. I am very happy to say that this playground is not only beautiful but that it has components for ALL children of ALL abilities. Not just physically challenged children but children that are in the spectrum of emotional and cognitive delays as well. And it isnt a "special needs section"!! My child, just as in life, will interact and play elbow to elbow with all the other kids. Which is not only helpful for my child but also for the typical children in teach empathy and acceptance for everyone early in life. This first picture is the final drawing of the playground. As you can see it is LARGE and very spacious. You will see the little ADA wheelchair that shows all the component

This is a zoomed drawing of the school aged portion of the playground. See all those lovely ADA symbols. They make me HAPPY!!

And here is the Tot Lot for the 2-5 kiddos. It was very important to me that these had toddler swings with belts so that all kids can swing. It wasnt until I purchased one of these when James was 2 that James could ever swing.

There are many componets to the playground that are Accessable that arent officially on the Special Needs equipment list. Like the surface. We will be using ADA compliant manufactured mulch!! This is HUGE for kids that use assisted devices to help them walk or play. It means that the muclh will compact and be come a wheel friendly surface.

We are using Leathers and Assoc to build the playground. Check out the link to see other playgrounds they have built. We also have a facebook page with all the info to volunteer and get more info if you are in my area clickHERE to go there. Now here comes the part where I ask for YOUR help. I get many emails everyday from all of you awesome people asking what you can do to help James. This is something that you can do to make a lasting difference in not only James's life but also so many kids with special needs that dont have a place to play like everyone else. If everyone on James' facebook fan page just gave $1 we could purchase one of the peices on the Special Needs equipment list. With that purchase we can also have a plaque that says it was donated by friends of James.

We are a 501 charity which means that you can get a Tax donation letter as well. All you have to do is ask me for that and I can get it to you. There are 2 ways for you to donate. You can click on the PayPal donate button that is on the right side of this blog OR you can mail a check to this address just make sure you put in the Memo line that it is for the Jump in for James donation. Make your checks out to Madison county Alabama as well.

Sharron Johnston Playground

C/O Jenny Barrett

PO Box 36

New Market, AL 35761

Our goal is $900 I want to purchase the Accessible Parallel Bars but whatever we can raise we will purchase what we can. We have already raised $150 so we are off to a great start. Here are some of the other Special Needs components.

Tactile / Sound / Special Needs Price

Tap Tubes* $1,000

Sandbox $900

Accessible Parallel Bars* $900

Sound Wall* $700

Tic Tac Toe* $550

Phones* SOLD

Game Table* SOLD

Sand Table* SOLD

Gator Balance on Chains $350

Pictures make me happy

2011-02-03T07:51:00.000-08:00

I did some Valentine pictures of my sweet baby boy and his little friend Jakob the other day. I thought I would share them here for those of you that arent on James facebook fan page.

James and his best friend Jakob

Sweet smiling face

Such a stinker

Being silly boys

Routine? what routine?

2011-01-31T18:49:00.000-08:00

Those of you that know me know that I am a routine girl. I like to know what is coming and I am pretty sure James takes after me in that department. When our routine is off he and I dont do to well. So the past few days have been rough to say the least. James is not having very productive PT sessions. He just doesnt want to do the work and we are running out of ways to make some of it "fun". cause frankly it just isnt it is hard and painful and he just has to do it. Try explaining that to a 3 year old. So that is where we stand.

Right now I am typing this on my phone because I am trying to make a velcro choice board for James. I got to thinking that he must feel like all these things are just being done to him. so I am making a way for him to hopfully feel like he is taking some control over his therapy. I dont know if it will work but it is worth a shot right? Ill let you know how it works out

Reality

2011-01-27T18:43:00.000-08:00

Have you ever just been so happy in your little bubble of "normal' and then someone comes along and just sticks a pin in it? This has been my story for the week. I get going about my day and our routine and then something happens or something is said and the big ugly mirror of reality is shoved right in my face. I wonder when to parents of kids with special needs ignore these, or does that ever happen? Is there something that I am just not able to move past, that keeps me so sensitive to comments? The answer is I just don't know?

The last thing I want to be is negative. Yes we have had true heartbreak in our lives but we have also been witness to God amazing healing power, and His ability to put the pieces of my broken heart back together again. True there might always been those seams but giving God my grief and worry allows me the freedom to live my life. But Satan sure knows where to attack me.

Earlier this week, I had a conversation with someone about a meeting that was going on that I was scheduled to attend. I am a leader of one of the committees and it was a time for people to meet everyone. I knew I needed to be there but I also knew that Josh had to work late and I would have to take James with me right during his bedtime. I also knew that the location is not exactly wheelchair friendly. So honestly I just didn't want to go if I was not truly needed. And in the conversation with this person, she mentioned that her kids would be running around playing and James could play with them. With all of my body, heart and mind I wish that were the case. But it isnt. The reality is, her children will be there running around on fully functioning legs. They will be interested in my son for about 5 mins and then run off and play together leaving my son. But I can say that to her, because that would be rude and make her uncomfortable And really there isnt anything she could do about it anyway. So I went and that is exactly what happened. James even noticed this time ( which crushed me) James asked me if he could get down and run like those kids. It was all I could do not to become a mass of tears right there when he asked that. But instead I kept my game face on and said " SURE honey, you can get down and play OR how about you RACE them with your wheels. I was happy he liked that option.

Then today when I was picking James up from school. I was so happy to hear about his good day. He and I were just strolling out to the car and he was telling me all about his day, when mother and her daughter walked by us. The daughter said and pointed ( quite loudly) " Hey mommy that is the boy that Cant walk"
And the mother turned around to look and then asked her daughter " do you know why" Now I know that people are curious as to why such a healthy looking ( and beautiful) child is in a wheelchair but cant you at least wait until you are in the car to talk about him. I honestly don't even think about or notice his wheelchair anymore so when people break their necks to stare or make comments it stops me in my tracks sometimes.

It breaks my heart that that little girls doesn't know James' name. She knows him as " the boy that cant walk" and that is NOT what defines my James or what he is. So I will be ending this post by telling you exactly what DOES define my James!!!
James is determined, sweet, kind hearted, the hardest working human being I know. If you sneeze he is the first to say bless you. He is the giver of the BEST kisses and hugs on the planet ( IMO) . When I bump my foot he always wants to know if I am OK. He loves his friends and his family. He tells the cutest knock knock jokes. His giggle can light up a room. When we do stretches and it hurts him he worries if I am hurting too. His little spiked head literally stops people in their tracks so they can tell me how cute he is. He tells perfect strangers that he like their shirts. He loves to make his mommy and daddy happy. He love to watch football with his daddy and tell the players to "Run it!" He tells me that I need to rest. His favorite game is Angry Birds. He likes to try and scare me by roaring, but then worries that he scared me, so he gives me hugs so I "feel better". He is sneaky. He is SO many many many more things that a boy in a wheelchair and I will spend my last breath making sure that HE knows it!

Good ole James update

2011-01-23T11:11:00.000-08:00

I thought it was about time that I did a Physical therapy and Surgery update on James. Sorry all these pictures are all from my phone but I just wanted to share some of them here.

Surgery first. James has done really well in his recovery. His scar is looking great. The swelling that has been above and below the scar is just about totally gone. They looked like there were little balls just under his skin. But we were told that all that is very normal as the bone that was removed from his spine grows back. Isn't the human body amazing!! The scare is about 2 to 3 inches and you can see when when he is shirtless. He will let ups touch or do whatever to it now without even noticing.

Physical therapy- We have had some changes in his PT routine. The therapist that we have had for a very long time has left the practice. We were very sad about this but our new therapist it wonderful. She is super sweet and James seems to like her ( as much as he is going to like a PT) James is receiving PT Mon and Wed and OT and Speech on Mon and Wed as well. These are hour and half sessions except for Wed which is a 2 hour session. We are looking for a new water therapist since the Pt that left was also our water therapist. This has made the biggest change in James. Since we have not been getting water therapy we have seen a BIG change in his tightness and pain level for therapy. So this is #1 on my to do list right now.

School- It is going GREAT! James is so happy in his little class. With the holiday and snow storms he hasn't been able to go in several weeks and we both miss it. I am ready to get him back on his routine because when he misses school that means he misses critical therapy sessions as well. He receives Pt, Ot and speech at school as well but only for 30 min each so they don't count toward his surgery Pt goals. With our PT leaving we are missing a PT day and since I could only get the 1 hr session at school until the end of Dec I am a little stressed about James not getting what he needs. Right now I am pretty much the only one feeling that pressure. I think family and friends are pretty much happy to just let him " Get what he gets and just be a kid" It is hard to make everyone understand that this is a year commitment to the surgery protocols. I guess that is why I have the mommy title huh :-) Which is fine. I am happy to do it.
It is isolating at times though. When I feel like everyone is tired of me talking about the surgery or physical therapy goals. I have to remind myself that they just don't live with this 24 hours a day everyday so for them it is a topic of conversation and for us it is just life.

What is next? The next few months will be just a busy as the last have been. James gets all new bracing this month including the new de-rotation cables ( ill post more about those later) We will also start a new stretching brace that he will have to sleep in. That is definitely a prayer request! Feb 2nd I will be taking James to Vanderbilt in Nashville for an eye appt. Our regular doctor moved and we have been in search of a new one.

I found a highly recommended one in Vandy so that is where we are headed. I have been noticing some pretty bad crossing and we were told that around 4 a second surgery was possible. I am hoping some patching is all that is needed!! Right now the dates are May but I think they will be moved up for the intensive camp. This is another 3 week camp similar to the last one and with the same therapist. This time we will be attending the camp 5 days a week instead of 4 and it will be 3 full weeks long. This camp was a HUGE part of the success James has had so far and Dr. Park said that he would like to see us do it every 6 months but at least once a year. So we are doing this one at the 6 month mark and then will probably look at once a year going forward. All depends on what insurance will cover and how much we can save up.

Now just for FUN!! These are a few pictures and things that James is up to in his everyday, sweet, smart and funny little life. I started a chore jar for James and he gets to "draw" what chore he will do each day. It also sneaks in some therapy ( notice the tall kneeling). i try to make everything he does fun and purposeful. This is James washing the french door windows.

Another "chore" is helping me clean the bathtub. Here we were actually done and I had walked out for a second. When I come back James had pulled himself to standing and was standing up and flat-footed!!

Here is James doing what he LOVES to do. Which is painting and drawing. Please ignore the trail of stuff on the floor. James is like little hurricane when he plays

James getting his haircut at our favorite place. Spoiled Rockin Kids Salon! It is a salon designed just for kids. They have a play area and TV with DVD players at each station. Ms. Nicole is so great with James. They even used him on an ad this past month!

We are potty training. We had a major set back when I was in Texas so we are starting back at square one but I know he will get back on track. This is a creation that I made for James and to help him sit up on the potty. When you have weak truck muscles it is difficult to sit on the potty, and adaptive seats are like 500 dollars!! So i had to be creative. With this he has a place to put his feet and color or read a book.

I think that covers most everything right now. As I type I have James at my feet asking to be fed so I have to run :-)

Mommy Guilt

2011-01-15T10:39:00.000-08:00

Alright Moms out there please tell me that I am not the only one that feels this. I am headed to Texas this week for a photography conference and I am SUPER excited but at the same time I an on the verge of a panic attack and the thought of leaving my family for 5 whole days!

I know that James will be loved, spoiled and safe at my mothers. I know that my husband will be well fed by my mother. And I know that the world will not spot turning because I am doing something for myself. But I find myself wanting to delete even those typed words.

"Doing something for myself"

It just sounds so selfish and silly. It doesnt sound like a good mother to me. And I know that those are things that I am telling myself but I cant seem to get them out of my head. I feel an extra burden because I am leaving someone else to take James to physical therapy. I worry that I am the only one that really understands how important it is that he gets there and that they appointments are productive. I worry this but yet I KNOW that when my mother takes him she will do exactly what I would in the situation. So why do I feel the sole responsibility . I guess that just comes with being a mother huh?

I am finding it really hard to pack because that just means I am really leaving. Oh how I LOVE my family and the thought of letting them down just breaks my heart. Please pray that I can give these thoughts and feelings to God so that He will free me of the burden of worry and guilt. I know that doing things like this will make me a better mother but I already just want to get home safe to my family. So if you have a extra minute in your prayer time here are some of the worries I need lifted up..

- My guilt over leaving
-Safe traveling and air flight ( I havent flown alone in over 15 years)
- Stress free PT visits for James and my mom
-that Josh and James will not miss me too much and will have fun while I am gone

My Blog, My Soap box

2011-01-12T19:52:00.001-08:00

Lets talk about slowing down and counting our blessings. Here in the deep south we have had a snow storm. For us getting 10 inches of snow is a once in every about 15 years, and this week it happened. Now I have always loved snow. I love that it is like a blanket of quite that comes over the world and forces us all to stop. I love that grown adults are tempted to run out and build snowmen and make snow angels. I love just about everything about snow.

When your days are filled with scenes like this..

And this.........

And those days that THIS is apart of my day to day life...........

Having a day where my whole family gets to stay in our PJ's , watch movies and make silly faces and giggle....Well I call that a good day. And I can honestly say that I can never get enough of those days

These are the memories that James will be left with...

This is the moment in time that we will say "Remember that snow of 2011 when we made that 7ft two headed snowman?"

These are moments the bond a family together with memories

We get to forget that our life isn't like a "normal" family. We just get to let our son eat snow!

Instead of taking our son to a doctor, therapist, or surgeons office..... We take him for a hike in the snow.

So I guess I look at snow days a little differently than most. Life will speed up soon enough, and of course I enjoy those moments when James is in school and I can breath for a second. But THESE moments don't come around very often. And they are some of the most important moments in a families life because they mean something. They create our families story and history. All activities in the world wont mean anything 50 years from now, but this will mean something. Taking the opportunity to bond as a family means that when life gets difficult we have these happy times to look back on.

When I think back on my childhood I don't think about the difficult times. Snow days are some of the first memories that come to my mind. I have to struggle to remember all the activities we were involved in but when a snow day comes around I can even remember the smell of snow cream. I remember teaching our Lab to pull us up the hill for one more sled. I remember my mom and I sitting and watching the birds and looking them up in her dad's bird book. I remember playing Battleship and Scrabble, and that my dad was one of the best scrabble players EVER. I remember those moments, and I know if I take a snow day with a smile on my face and teach James how to slow down and enjoy the little things in life, he will remember too. These too are teachable moments for our children. If we teach them that slowing down is boring and inconvenient, we are teaching them that family time is not as valuable.

Ok stepping down from my snow day soapbox with one last note. I understand that there are jobs and situations that mean a parent cant "take" and actual snow day. That is not the point of this post and if that is all you come away with then I encourage you to take a moment to re-read it and get the meaning behind my words.

New Design for the New Year

2011-01-01T19:05:00.000-08:00

I have been wanting to have a new look for this blog for a while and I final had a few seconds to get it done. This weekend has been really great. Josh has has the entire weekend off and we have enjoyed each others company. We made a decisions a few years ago that some weekends are issue free. This means that we spend the time relaxing and reconnecting as a couple and family. No talk about therapies, doctors, or bills. Just time together.

Being a family that has to deal with a lot of extra issues, this has been a must for us. I dont think we would have as good of a marriage as we do if we didnt do this. When we were struggling so hard for so many years to have a child, I learned the hard way that men and women think differently. And I did somethings that really damaged us as a couple. I regret those things and have really prayed that God will help be be the woman and wife that He has called me to be. Ad for this strong willed lady it can be tough. But Issue free weekends have been a way that I give myself permission to let it all go.

I realized that the world didnt stop spinning because I didnt nag Josh about fixing the x,y and z. In fact I learned that when we grew closer together in the fun stuff we were on the same page with the serious side of life. Isn't God good!!

Ok so I know that this post is supposed to be about 2010, and I will get to writing one of those but honestly I have to work on it some more. Saying goodbye to 2010 is bittersweet and there are some things that I have not even shared here that I feel I need to let go of. I need to say goodbye to 2010 in the right way and not rush it because when I look back on this blog I want to really remember all the joys, tears and blessings that we have had this year.

So for now I am taking my own advise and going to go back to my husband and enjoy our issue free weekend!! Watch some football and enjoy snuggling with my family! As James told us today " HAPPY YEAR YEAR!"

What I see...

2010-12-30T13:16:00.000-08:00

When you look at this photo what do you see? Do you notice that it is unfocused? Do you see all the clutter of my living room? Or maybe you just see a "disabled" child?

I am sure there are so many different view points from each of you. I wanted to share what I see when I look at this photo.

I see.........

Determination
Hard Work
Long hours in a Physical therapy exam room
Tears of Pain
Tears of Joy
Sleepless nights
Surgery
Hope
A Future
Independence
Quality of Life

I see Movement!

I have so many pictures of James being held in place or standing up for a split second while I snap and quick as I can. But I don't have many pictures of MOVEMENT! Pictures where you can see all the hard work he has put into making his body work. Yes, he has a long way to go but pictures like this PROVE that he is on his way. All the work is not for naught. It has all be for a reason . He is moving and it is beautiful!

Jesus' word will find you

2010-12-27T18:44:00.000-08:00

For Christmas we got James a Veggie Tales devotional book for little boys. It was one of those stocking stuffers that I hoped he would like after we got into the routine of it but never expected him to really notice it. It has no pictures or colors. The wording is actually written a little old for James but the lessons are good. Christmas night we read our first devotional. It is important to Josh and I both that James grow up with a thirst for Christ.

I was shocked at how attached James has been over this book. He calls it his Bible book and has cried every night because I wont let him sleep with it. I love that he loves it but to be honest I think God has put such a love for it in James for me. I have been struggling with staying optimistic and focused on James positive recovery. We have hit a platue and I see so many other children that have had the SDR now starting to take independent steps or other big milestones that James hasnt reached yet. And it has been frustrating for me. It has been 3 years now that I have been a mother of a child with special needs and you would think that I have learned not to compare James to other kids by now but I havent. James is also having some new physical struggles in PT. His left foot has turned inward at a 90 degree angle and it is really keeping him from walking. He is so frustrated and that is just a domino affect on the rest of therapy. His water therapy has been canceled and I really think that has a LOT to do with his new tightness. I am going to pick up the slack by taking him myself to a pool each week until his therapist returns.

Getting back to my original point. While going through James' little nightly devotionals God has really spoke to me. The past 3 devotionals have been about frustration and having a happy spirit. I just find it beautiful that God can give you want you need even through Larry the tomato! And today we were given another reason to be happy. James stood independently without his walker or holding one to anything or anyone for 10 whole seconds! It was beautiful!

Next week James will be adding some de-rotation cords to his cute outfits. The Pt department thinks that with stretching and these cables we might be able to fix this new issue without surgery. James will have to wear these cables all the time for awhile so please say a prayer that they wont be too uncomfortable and that they will ease his frustration.

Merry Christmas

2010-12-22T17:43:00.003-08:00

From the Pollard family to your family I want to wish you a VERY MERRY CHRISTMAS!

Christmas through a photographers eyes

2010-12-18T18:39:00.001-08:00

For those of you that dont know I have a growing photography studio . I love it! I love that I get to be my own boss, make my own schedule and do what I LOVE to every week. There are a few slight draw back to it though.

#1 Being that my own son is so sick of having his picture taken and being my model that anything that remotely looks like camera he looks down and refuses to look up. I think I might be causing him a complex LOL

#2 My poor family is always the last to get our Christmas card pictures done. In fact this year I just grabbed my camera and through something on James in our living room. (oh the photography shame!)

#3 I have become computer blind! I have stared at this computer screen so much that I might be going crazy. I have made so many Christmas cards and orders that I am seeing jingle bells and holly leafs in my sleep!

Now dont get me wrong, I am SO happy that my business has taken off so much that I can even say that I am remotely busy. I just will be happy to have all these orders done and spend some Christmas time with MY family. Dare I say that I might even break out my camera for some non work pictures!!
woohoo!

Looking Back

2010-12-02T08:02:00.000-08:00

Every year as I take down my Christmas Tree I am spend the time in prayer and thoughts about what the New Year will hold for our family. This year though as I was putting up my tree I reflected on the past 6.5 years. Now my tree will never win a decorating award and it certainly is NOT a "show" tree. It is the kind of tree I grew up with. A mix of 1st ornaments, mother's day gifts, macaroni art, and teacher gifts my parents brought home from school each year. Every once in a while mom would bring home an ornament from a special trip.

My Tree is no different. I like to think of it as a Hodge-podge of memories from each year. Each ornament I put up a think about when and where I got it. Some ornaments mark places we have been.

Some places like this one from St. Louis, will always remind me of James SDR surgery. Last year we were celebrating Christmas with a child that could barely sit up on his own and we had just been told that he would be wheelchair bound. But this year, after St. Louis, we are celebrating with a child that is walking to the playground at school in his walker!!

Some ornaments are homemade and make me think about the bright eyed children that spent a Saturday making such sweet gifts for me. I care for these just as gently as any store bought ornament.

There are a few ornaments that just make me LAUGH!! For a few years at thanksgiving ( when puff paints were all the rage) My family had a craft that we all worked on. Some years it was a quilt that we would all sign. and over the year when we realized that boyfriends and girlfriends come and go and that it looks odd to have larger puff paint smear by a name ;-). We moved on to ornaments. This was my 2005 creation! Now in my defense we were making "silly" ornaments......Silly isnt the word that I describe this one as now ( it is in the back of my tree)

And in keeping with my childhood tree, I have many ornaments from my days as a K teacher.

This is the ornament that I always let Josh hang. It was given to us by his grandparents. We dont see his side of the family very often and they arent involved in James' life, which is very sad, but it is our reality. But these ornaments remind me of better times.

And then there are the ornaments that mark time. Time in our lives that might be sad and overwhelming but remind me to live my life looking to my Savior. Some of my ornaments are the only connection James will have to Josh's Father since he passed away just a few months before James was born. This ornament was one that BJ ( Josh's father) would always hang on the tree. He would come over to watch me put the tree up and I would force him to put at least one ornament on the tree. And this was the one

Then there the ornaments that reflect our life with James. Oh how I LONGED for these ornaments to hang from my tree. Not just a symbol of a heartbreak that will never be here on earth but one that celebrated LIFE. And boy does he have many! 6 as a matter of fact ;-) This is my favorite. James was just 2 week out of the NICU and 6 weeks old. He was still SOOO very tiny that Santa held him in just the palms of his hands and just lifted him up to his face. his outfit was just huge on him too . I just think it is so cute and I love it!

Sometimes I think back to those days and I just wish I could tell myself to slow down and enjoy it more. I wish that I could tell myself that the next few years are going to be the hardest of your life but not to worry because they will also be the BEST years of my life too. I would tell myself to deal with my guilt earlier than I did and to not let it rob me of the GIFT I had been given in James.

So there you have it! This was my stream of consciousness as I was putting up my tree for 2010 Christmas.

Thanksgiving and the Family

2010-11-20T15:59:00.000-08:00

Oh My how I love Thanksgiving! It might be might favorite. don't get me wrong I LOVE Christmas but there is just something relaxed about thanksgiving to me. It is all the family togetherness and none of the gift-giving stress. My favorite part is that my Aunt Sarah and her family will be here like they have been for as long as I can remember. They make the trek down from NC and stay for several days. I LOVE getting to spend time with them.

I wanted to also make a very special request for a new friend. I have met some really awesome people during this whole process of the SDR surgery. Some in real life and some are Internet friends that I hope to meet one day. Well my new friend @www.johnnyinadress.blogspot.com is one of those new friends. He son Cliff will be having the SDR surgery this coming up week. I have been praying for this family for awhile now but wanted to extend that prayer request. We know that God is in control but I wanted to ask for all of you to please pray that the doctors, nurses and everyone that will be involved in Cliff's care is under a blanket of prayer. Please pray that Cliff's mommy, daddy and family will be rested and feel at peace during the surgery. And of course please pray that Cliff will be calm and have a quick and smooth recovery after surgery.

As far as James news. Dr Park was very happy with were he was in his revovery. Dr. Park felt that James was right on track and in some points was a little a head. He was pleased with his lever of strength and his ability to get up into tall kneeling by himself. James showed them all how well he walking in his walker with and without braces. He also showed how we are working on getting him into using his canes. Dr. Park told us that he sees James being able to move from the walker to the canes very soon. James hips are better than pre-op! We were excited to hear such good reports.

There are a few concerns that Dr. Park adressed with us. James is having what is called Tibleal torsion. This means that from his knee to his foot there is a twisting. His left foot is turning in. We thought it was his hip causing his but we now know that it is because of the TT. This is not the best news and could mean that around 12 or 13 James will have to have this corrected. The plan of action for this is to work on therapy activities that support corrected positioning. we have time and James being so young on our side. Right now the bone is not twisted but the muscles are trying to twist it. We are just going to do our best to correct it without surgery. Concern #2 is James' heel cord on his left leg. When you dont walk and naturally stretch out your hamstring and heelcord they become too short as you grow. This is what has happened. So you see walking is not all just about walking. It affects so many other parts of your body. his right foot isnt too ba but his left heelcord is also contributing to the twisting of the leg as well. The plan of action for this is night time stretching int he form of braces that James will sleep in. Not too excited about that, but we will do whatever we have to. I dont want James toe walking since that is so very bad for that heelcord and the ability for James bones to grow correctly. We will do the braces for a year and then when we go back to see Dr. Park we will talk about if James needs Heelcrod lenghtening. Dr. Park think that he will but the good thing about having had the SDR we will be able to do a less invasive proceedure for this. In fact we should be able to do a out patient procedure that St. Louis does. That is pretty much all the medical info that we learned on our trip. It was a short and sweet trip but a good one!!

Ortho Update

2010-11-04T16:39:00.000-07:00

First I wanted to give a PreSchool update on James. I am going off what his teacher tells me and from the notes that I am given. I know that drop off has been great. He doesnt cry at all when I drop him off and the other kids usually say "Its James!" so I think he is making some good friends. Tuesday was a rough day I think. His teacher's aid said that he cried a lot. I think a lot of that was the fact that we started an hour of PT during school.

I know that the PT the school is using is a contract PT. I am not sure if she has been trained in pediatrics because from her notes she says that James is not tolerant of PT. And if you have been reading about James for very long you know that he works harder than any ADULT I have ever know much less a toddler. But I just climbed the hill of getting him a hour of PT in school, so i have to pick my battles for right now. I am not very happy with the therapist and the notes she has been writing me. It just seems like she isnt very willing to learn about James and what motivates him. It is frustrating for me and I KNOW it has to be frustrating for James. i have worked so hard to make PT fun that I am afraid she is messing that up. I mean I am in PT with James for hours EVERYDAY of the week, so I know that it is hard work to keep a 3 year old motivated. I am not new to this rodeo, but I dont think my experience is wanted.

I am glad that his teacher seems to be picking up where the PT is lacking. She is very willing to listen to me and not push my concerns and suggestions aside. I am the first to say that I hate being "that" mom but if it means giving my James the best chance in life to walk and be independent then I dont mind stepping on a few toes. I just hope it gets easier but if our life holds true to this pattern I can forget that ;-) I am researching getting an advocate but right now we have such a great teacher that I think she will help me get James what he needs. Today I was told was a wonderful day. He laughed and smiled a lot. He didnt cry once. I am glad they are getting so see the sweet James as well.

I picked James up from school a littler early today because he had his 6 month check with Dr. B his Pediatric Orthopedic Dr. Usually this in an appointment that has lots of tears because it has always been such a painful exam and James HATE getting x-rays done. BUT the super cool thing I had forgotten was that post-surgery James doesn't have the pain getting checked out now :-) What a wonderful change that was. He let the Dr. moves his legs around ( and he could) and he even walked for him. He didnt even cry when he had his x-rays done. WOW being pain free is a wonderful thing!!

Dr. B took a look at James hip that has been going in and out of socket. The bad news is it hasnt changed since before surgery....the GOOD news is that is hasnt changed since surgery . We just have to take the good and roll with is. His hip is unchanged. I am curious to see what Dr. Park thinks about that. Dr. B doesnt think it is causing any pain and I dont either. It does pop but James doesnt seem to care at all when it does that. He also talked about James tibial torsion that he has. This means James foot is twisting in from his knee. It will eventually cause bone deformity but right now there is nothing we can do about it because he is growing at such a rapid rate it would do any good to fix it now. I am not going to borrow trouble. We will just put what I can not change on the back burner for now. Dr. B thought that James looked wonderful. He loved James walking so well. I liked that the only tears that were shed were when James couldn't stay and play with the "girls" ( nurses that were loving on James)

Next week we will be headed up to St. Louis. I am very excited about finding out what Dr. Park and the PT have to say about James' progress. I hope they will be pleased with how he has done. I know that we certainly are!!

The view from here

2010-11-02T16:23:00.000-07:00

Sometimes I am asked how I manage everything in my day. Can I be honest with you here on my blog?

I dont know!

Sometimes when the day is over and I finally sit down, I wonder myself how I fit all the "stuff" in one day. But we do and that is our life right now. I try my best to do it with as much grace and I can muster but sometimes I dont do so well. I know that can be short and blunt with those around me. I hope that I make up for it on the days that I am myself.

Its just that sometimes my view is clouded with therapists, IEP's, doctor appointments, medical bills and just STUFF of life with a child that has special needs. I know that I forget to look up from that specific view in times stress. But when I do I can see that the sights are pretty good from here too. I wanted to share a few positives of life with James so that you know that I really do see the blessings in my life as well.

Having a child with special needs gives you a different perspective on those childhood milestones. I also think that I have a special appreciation for the little things in life as well. Take Halloween for example, most parents might not give a second thought to their child walking up to get candy. For our family it took us 3 years to see James be able to walk up to 2 houses. It was beautiful and something that I will never forget.

James is such a joy. He loves to laugh and play with his kitchen. He is able to crawl on his hands and knees pretty much everywhere now. He doesnt army crawl pretty much at all anymore. He can pull up to the coffee table and the couch anytime he wants to. His favorite activity right now is to go outside on the patio by himself ( of course I am watching him) He loves to tell me "Bye Mommy. I go outside now" He plays with his sidewalk chalk and sand table. He can even throw a ball to his dog Sushi. He gets dirty and sticky. James is all boy and I love it!

When I get wrapped up in taking care of all the things he "cant" do I have to take a moment and remind myself of all the things that he CAN do!

Shelter in the Storm

2010-10-26T08:16:00.000-07:00

I LOVE blogging! If you read my post as of last night you know that yesterday was a bad day. It was one of those days that guilt and grief took hold of my joy. But last night I got it out had a good cry. In fact, I havent had one of those breakdown type of cries in a long long time, and I think I was due. There is something about falling on your face before the Lord and letting go of everything that had built up in your heart and mind. And last night that is what I literally did.

I gave all that anger, guilt , grief and sorrow that was stealing my joy to my Savior. I stopped letting satan convince me that my God isnt big enough to take it from me. Of course I know that God wants all my burdens, I just sometimes forget that I have to surrender them to him first. He is there with the open arms. I am so thankful for that. If I have to walk around with what I felt last night I just dont know how I could get out of bed and breath each day.

So this morning I feel relieved. I am still struggling and it might be that each hour I have to re-surrender my thought to God but that is my focus. Give it to HIM until this storm passes. HE his my shelter today in the storm ,HE is my protection from this anger that is trying to control me right now, HE is my hope!

Fitting that we have Tornado watches today. I have a bit more of a peace about those today too ;-)

My Anger Vent

2010-10-25T18:34:00.001-07:00

Warning I am having a pity party today! You were warned...

Today is just one of those days that I allow myself to feel bad. I try to do too many of these or at least I try not to stay in them for too long. About a year after James was born I realized that I needed some counseling to deal with the guilt I have over James' condition. During that counseling I learned that guilt and grief is very cyclical. I think I had been told that before but when you are so frustrated that you can seem to "graduate" from one of the stages it is good to have a counselor remind you that you are "normal" ( whatever that is) So that means that you can find yourself in acceptance and be trucking along with life and the BAM! you are smack dab in the middle of anger. Or at least that is where I find myself today. So here goes I am going to vent what I am angry about in hopes that it will make me feel better.

I am angry that people stare and my child! He is not some side show that you have permission to gaulk at as we try to grocery shop or buy a Halloween costume.

I am angry that it is ME that has to make others feel comfortable when their children stare. YES! children are curious but it is YOUR responsibility as a parent to use that moment to teach them manners and about tolerance.

I am angry that people feel that it is OK to just walk up to me and ask "what is wrong with him" I just want to scream at them "How rude! What is wrong with YOU"

I am angry that parents let their children come up and asks me why James is in a wheelchair and they just sit there and wait for an answer too. Dont use your children as pawns to ask rude questions you really want to know as well.

I am angry that I missed all those milestone moments that other moms gets. I read posts about them and it just kills me that I wont get those moments

I am angry that I have to worry about will James ever be able to live on his own.

I am angry that I have to be the "bad" mommy and cause my son pain

I am angry that my son is caused pain at MY hands!! ( it deserved two)

I am angry that my husband's family is so clueless and selfish about the life we live with James that they dont even bother see our side. I am angry that James will only have one set of grandparents that care and love him unconditionaly

I am angry that when we are invited to a playdate I have to do my homework to make sure James will have something that he can play on.

I am angry that people just dont get it.

Tonight I am ANGRY!

Jesus, I give you my anger. Please take it from my heart and my mind. I am powerless to do it on my own and I need you to free me from this tonight. Ephesians 4:31 Let all bitterness and wrath and anger and clamor and slander be put away from you, along with all malice

Quickie!

2010-10-19T20:03:00.000-07:00

I just wanted to post a thought that I have been pretty excited about this evening. I am looking to order James quad canes because he is doing SO well on his walker!!! We are going to start teaching him how to use them. I am going to take it slow because I dont want to frustrate him but this kid just keeps raising the bar!! I cant keep up with him. Nov 15th we go to St. Louis for his 4 month re-check and I cant wait to see what Dr. Park thinks of his progress.

On concern though, I have been noticing that his right hip is turning out more and has started to make a popping sound :-( . I am hoping that it isnt a big deal but it doesnt sound good for his hip. We had hoping it would go completly back into socket but I dont know if it has. Please pray that this will be an easy fix and we can avoid a surgery is 2011!!

Take my Breath Away!

2010-10-15T15:52:00.000-07:00

Yesterday I went to pick up James from his 2nd day of pre-school. I tried my best to be more on time instead of an hour early like the first day. But I still was a little early... I still have to be me ;-) As I was sitting in the line I got to thinking about all that we have been through this summer.

We have traveled 10 hours aways from our home after a year of research. In hopes that Dr. Park in St. Louis would be able to help James to a vertical life. We sat by our son's bedside while he was in the PICU and then struggle in those first few days of Physical therapy. Remember this

I sure do! It was just 19 weeks ago when James was struggling to stand and hold his own body weight and we were so thrilled! Just 19 weeks ago James took those first assisted steps in the PT department at St. Louis and the shock was overwhelming. I sat in the carline and did my best to hold on to those memories. They have a funny way of getting away from you, and that is why I blog. I love going back to those days and reliving those raw emotions.

Back to the carline..... I thought about bringing James home for the 2nd time in his life and he had a new body. We didnt have to pry his legs apart to change his diaper and he didnt cry in pain when his legs would spasm ( because they dont anymore) I thought about all the hardwork James has done and still has left. He and I have spent a lot of time together. During the 3 week program at Birmingham this summer James and got even closer, if that is even possible.

So turning his care, even if a small part, to school has been hard for me. So I sat with the other moms and wondered what their stories are. I am sure they have one too. When I saw that it was time to walk up to the door, I was excited so see James again. What I saw truly took my breath away.

They opened the door and my son that just 19 weeks ago couldn't hold his own head up because he was so weak, WALKED to me! I wanted to cry but decided that I didn't want the teacher to think I was more of a nut case than they already do (ie sitting in the car line for an hour). Instead I tried my best to stop time! In fact, I prayed for God to just give me a few extra seconds to enjoy this. It was beautiful. I know it was just a short walk in reality but I saw Independence. I saw a young man going to college. I saw a grown man living independently. I saw what true hope looks like. So many have spend 3 years trying to take my hope away and replace it with "reality" Thursday Oct 14th my hope WAS reality!!! And I enjoyed every second of it that I could. I thought about pulling out my phone for a video but I didn't want to miss any of it myself.

And that is just his first week of pre-school! If you are like me you just cant WAIT to see how James will shatter all those ceilings that people have tried to put on him in his short little life.

********

I know this is James' blog but I cant let this day pass without making mention of Infant and Pregnancy Loss Awareness day. Those of you that know me well and know our story know that today is a special day of remembrance for our family. I wanted to praise my Savior for giving me such a joy in my life. I have been so blessed and although we have known true sadness, I am a more loving person for it. I love harder because I know how your world can change in a moment. And so many mothers and fathers are hurting. I am glad that there is a day that they can remember and celebrate the love that they share.

My work with Now I Lay Me Down to Sleep.com has really opened my eyes to all the families that are in our community that have suffered such lost. I am so honored to have been allowed to document those precious moments with their children, but my heart breaks for them as well. So if you would take a moment and share a prayer for these families.

Dear Pre-School Teacher

2010-10-11T18:48:00.000-07:00

I know that all Parents love and adore the children that they send to your classroom. But James is extra special to this Mommy. You see, James is the result of a broken hearted woman that so desperately wanted to become a Mommy to a baby here on earth. James is literally the answer to my prayers. I know at first you will see his physical disability. I cant change that, but it is my prayer that you will quickly see the smart, loving, tender-hearted child that I call son.

We have met and talked about the goals that we would like James to meet this year in your class, and those are important. I want to support you in your efforts to help James meet those goals. I will always be on YOUR side in James' eyes. But please know that those are just surface goals. I am trusting you with the most precious part of my life. I am trusting that you will begin James' experience with school in a positive way. I am trusting that you will treat James with the same determination that you share with all your students.

James needs to be pushed. Please do not be afraid to correct him in a loving way. Look beyond his wheelchair and walker and see that he is ALL boy. He needs boundaries and rules like any student. Those days that you are frustrated with him and he just doesn't want to cooperate with your lesson plan....please take a moment and breath. Before you add another label to his already growing list just breath. Remember that he is just a boy and they are stubborn regardless if they can walk or not.

I know that other moms might not be so worried about sending their children just 2 days a week, but this Mom is different. My prayer is that we are a team, and that you are patient with me as well. Just know that my heart is fragile and letting go of something that I prayed so hard for it difficult. My head knows that this is good for James but my heart is having a difficult time knowing that he is not safe within my reach. So I am going to try and breath myself but please be patient with me as well.

Thank you,

A Self Proclaimed Helicopter Mom!!

Happy Birthday Sweet Baby James

2010-10-08T11:28:00.000-07:00

Today is a mix of emotions for me. I am torn between complete joy and utter fear. Of course the birth of my son was the most amazing and beautiful experience, even if it was such a surprise this day 3 years ago. I thought you might like to read the post I wrote while I was sitting all alone in my hospital room and James was in the NICU. Here is James' birth story.....

October 8, 2007

Well lets see where to start.........

Friday Oct. 5th I went in for my 32 weeks appointment. Not expecting anything out of the ordinary, but I happened to mention that James wasnt moving as much as he normally does that time of day. So the nurse said lets just double check, so they hooked me up to the fetal heart monitor and tracked his movements and heart rate for an hour.

Dr. Conrad came in and looked at the strip and said that everything looked just ok. Well my heart rate of course went WAY up because "just ok" wasnt what I wanted to hear. So Dr. Conrad took me into the ultrasound room to see what was going on. And I could tell that something wasnt right because he wasnt saying anything and he was moving the ultrasound wand around a lot. I asked what was wrong and he said that my fluid was low. Levels are supposed to be over 8cm and mine was 6.5cm so he said that he was putting me on bed rest for the weekend and that I had to come back in Monday first thing. He said to come prepared to go to the hospital to be induced. I just walked out of the office without asking any questions ( which is NOT like me).

I was in so much shock that I couldnt even think of anything to ask. I spent the weekend on bedrest and drank a swimming pool full of water! Josh and I pack everything up just in case, and Monday morning we went to the office. They hooked me up again to the fetal monitor and Josh and I sat in the little room just waiting.

Dr. Conrad came in again and this time I could see something wrong when he looked at the strip. He took us back to do another ultrasound and this time the levels were 3cm. The doctor sat down and told us that we are having our baby today because my water has broken. He said that I had a very high and slow break that has been leaking for probably a week. He sent us straight to the hospital for induction.

We got to the hospital at about 12 noon and were admitted for the induction. The started pitocin wide open as soon as I got in the bed. At this point I was very high closed and as green as can be. At this point the Neonatologist came in to talk to me about what was going to happen. He told me all about the vaginal delivery process because that is what we thought was going to happen. Josh and I were nervous but felt that we were in good hands and and family and friends started to show up it felt just like a normal labor.

After about an hour in the Pitocin I started to feel the contractions some. But I was able to handle them and James was doing well so we kept going. I was even able to take a little nap during this time. Josh and I talked and played cards for about another hour then the BIG contractions started to hit. I was proud of myself at how I was able to breath through them. They were coming every 2 minutes at this point and were very strong. The nurse came in and checked me and I was 1cm and 50% and -2 station. So the pitocin was working and I was progressing fairly quickly.

At 5:00pm Dr. Conrad came in to check me. And I was 3cm and 100% but James's heart rate was started to dip. Dr. Conrad sat on the edge of the bed and told me that he wasnt liking what was going on with the baby. He said that his heart rate was dipped like it would at the end of labor and that he didnt think James could handle several more hours of labor. He wanted to do an emergency c-section. I started to cry and at this point I was terrified. I was terrified for James and for having a c-section. I was so happy to see my Mom's face as they were wheeling me back. But I knew that Huntsville Hospital is a wonderful hospital with top notch doctors and a brand new state of the art NICU .

So at 6:00 I was in the OR They gave me a spinal epi at 6:10 and in 8 minutes James was out! 4lbs 8 oz and 17 inches long. I heard the smallest cry ever, but it was the most beautiful sound I have ever heard. They showed him to me for a quick kiss and Josh was able to carry him to the NICU. I will never forget the doctor and nurse talking about thier new boat and lake house while they sewed me back up. It felt like I wasnt even in the room. I wasnt feeling any physical pain but my heart had just been taken out of the room and whisked away where I couldnt see.

While I was in the recovery room Josh came back down and showed me the pictures and video of James's first moments in the world. He scored a 7 on is apgar and was put under the oxygen tent right away. By the time that they wheeled me to the NICU to see him they had put him on the ventilator and started IVs and monitors. All the emotion of the day flooded me at this point and I fell apart, but I was also so happy to see his sweet little face. It was a day that was scary, but yet the happiest day of my life.

As I sit here in my hospital bed, I cant help but wonder when I will get to hold my baby. His little face was such a blur as they took him away from me. All those wires and tubes coming out of him make him look so much smaller than he already is. All they let me touch was his little foot, and that just doesnt seem like enough. Doesnt he need to know I am here. I feel like he has been ripped from the only safe place he has know, but I guess it wasnt so safe after all. I just feel so guilty that my body has betrayed him. I just want him to be safe and in my arms.

I dont know when I will get to hold him but I hope it is soon. They have told me that they have started a drug into his vent to open up his lungs. I pray that there aren't any bad side effects from having to be on the vent and the drugs they are giving him. Nurse just came into help me down to go see him. I will update soon!

***************************

As I re-read that birth story, I am struck by just how simple I thought it was all going to be. I thought I we would bring a baby home in 3-5 days and it would all just be a story we told him. Little did I know that the next 30 days would be hard but they are just the beginning of James' story.

A letter to James on your 3rd Birthday,

Wow! These past 3 years have flown by. It seems like my last breath you were this teeny tiny little baby that was the size of a beanie baby. You have overcome so many obstacles in a short 3 years. This year you have amazed me even further. I am so proud of you James. I proud to be called your mother. I fill up with joy and pride when people comment on how beautiful you are and your wonderful personality.

At 3 years old you have more determination in your little body than I have seen in most grown adults. When I take you to physical therapy everyday, I know you would rather be home playing with your toys, drawing, or watching a Blue's clues, but you go with a smile on your face. You work so hard everyday to just do simple tasks but yet you still find the humor in life to giggle and laugh. Some days I wish I could just curl up with you on the bed and we could watch movies all day. I hope that you know that Mommy is trying to do my very best job at helping you be an independent adult. I know you get frustrated but thank you for working through it and fighting on.

You have touched so many lives this year. You have been in 2 newspapers, on the local news, and had a whole community came to your carnival. It must be the smile!! Your Daddy and I love you for all that you are now and all that we know you will become! There has never been one second of one day that I have not loved all of you. I know that this life might be harder for you because of your legs but I know that if any child can overcome and make the best of it, that is YOU! Me and Daddy will always be your cheerleaders.

Today you turn 3 years old, and I hope that you are having a wonderful day. I hope that this year brings so many wonderful things for our family. Last year we got to watch you take your first steps. I cant wait to see what you do this year!!

I love you Sweet Baby James!
Mommy

Did you think I had left you??

2010-09-27T14:51:00.000-07:00

Well I didn't :-) James and I are still here, but every time I sit down to blog about what is going on I loose all my words. The past few weeks since we have been home from the therapy camp James has started to walk independently with his walker ( yippie!!) , we have moved to a new home, and I opened a new photography studio.

These were things that really weren't planned to happen all together but that is they way they fell. i have been doing my best just to keep my head above water with everything that has been going on. I haven't been doing such a good job. In fact last week I passed out at one of James Pt sessions and for the greater part of the day it was thought that I had had a stroke.

NICE!! A 32 year old stroke victim. That is a title that I do not want behind my name. So this weekend I have been really reflecting on what truly is important and what isnt. I have always enjoyed being busy and I don't think that will change. the thing that HAS to change is taking time for myself. I have always had good reason for not taking that time. They are great excuses, but wanna know the truth of the matter? If I am busy I cant be sad. If my days are filled with "To Do" lists I don't notice all those mothers in the grocery store that are complaining how they have to chase their children up and down the aisles. If I am busy I can keep from yelling at them that they should be praising God that their children are alive and running!!

See, all of you that think I am some sort of "Super Mom", now can see that I am just a tired mom just trying to hold it together. I am beyond grateful that I even have James. Every time this year ( around James' birthday) I start to reflect on just how easily I could not have James. God has blessed me so much with the ability to raise James on this side of heaven and I feel like I should be in constant praise for that. I try to be but the Devil knows just where to attack me.

So the bottom line to all that is that I am going to be doing some hard looking at my daily schedule as well as some of the activities that can survive without my help. Not everyone is going to be happy with me but I have got to be around for James and my husband for many many more years. The path I am on wont get me there.

We made IT!!

2010-09-02T21:06:00.000-07:00

Well folks I am happy to say that James and I have survived 3 weeks of living away from home. James has survived not only that but VERY intensive physical therapy each of those days. We have celebrated a birthday, gotten hives, grieved with fellow housemates over the loss of children and met some friends that we will hopefully have for a lifetime. It has been an adventure and I am very happy we did it. James has made great progress and I am so proud of him.

I think I have told him so much how proud I am of him because everytime he finishes a task he will now proclaim " I did IT! I proud of you!" I am so glad that he understands that Mommy is alway in his corner cheering. Even if i am asking him to work so very hard his little legs are shaking I am cheering him on the whole time. How I wish with every fiber of my being that I could just "fix" all this stress he has to go through, but I truly do feel that from this James will do great things. God has a plan for this kid. I am just honored I get to watch it unfold!!

So lets talk a little bit about todays therapy session. The first 30 mins I came SO close to just grabbing my baby up and driving home. He was clingy and cried as I watched hives break out all over his little body. It BROKE MY HEART!! But then during a little Mommy break he asked for some of my ice. I gave him some, and it calmed him down. He kept asking for more and I just gave it to him. Well the therapist started working with him and ijust kept pumping the ice in his mouth because it wasnt crying. He walked 10 min on the treamill, no crying...more ice. He knee walked to his canes, no crying....more ice. He walk across the room using the best steps he has used so far, no crying....... give this child as much ice and he wants!!!!

The PT brought in one of the ladies that specializes in sensory issues. She explained to me that James is sensory seeking ( which we knew) After his surgery and the nerves were cut his little nervous system has taken quite I shock. And because of this his sensory system ( part of the nervous) is also in shock and trying to calm its self. I had known this because St. Louis talked to us about it before surgery. Well we have tried weighted vest and lots of other things but apparently James need the oral input. And the hard crunching of the ice is giving him the vibrations in his TMJ bone that is soothing to him. And then causes him to be calmer and more himself. It was like someone has flipped a switch with James today. He was his happy and calm self during the rest of his therapy. He actually got some of the best steps in of the 3 weeks. It was amazing and what "chompin" on ice did for him today!!

Hives and Homesickness!

2010-09-01T20:25:00.000-07:00

James and I are ready to get back home. He is for sure! I am sad to say that his little body is starting to show signs of stress in the form of hives. We got up and ready like normal today. We went over to the therapy office and they put James down on the heating pads getting ready for his stretches.

As he was playing, I noticed a few welps on his upper arm. I thought they were bub bites but when I touched them they were very hot and then I noticed there were more starting to pop up. We all started to look him over ( he did not like this) and discovered that he was covered with red hives. He had gotten so very upset while we were trying to look at the hives that I decided we needed to cut the therapy day short.

I took him back to our room and gave him a dose of benadryl. After about an hour the hives started to fade. I called our pediatrician and our family Dr. for thier advise. Both agreed that as long as he isnt having any other symptoms then benadryl is really all the ER would do anyway. We James and I took a nap and rested for the afternoon. I discovered that I missed a cupcake delivery from a friend that came to visit and was turned away by the Ronald McDonald house staff, and that was sad to find out. I sure could have used the company of a friendly face today, but oh well.

So when James woke up the hices were gone but did come back this afternoon. And they were worse that before. I did the mas dose of benadryl the Dr. said I could give him. There was a Dr. a the therapy center that was rounding and he took a look. He said that they are stress hive. This really makes me sad to know that I an causing my child so much stress that he is breakingout in hives.

So tonight I am a little sad. I am sad that James is under so much stress and I feel to blame. I am left with some questions tonight that are keeping me from sleeping. Is my desire to see James walk causing him harm? And I hurting the one human being that I honestly would jump infront of a bus for?? And I trying to "fix" him when he really isnt broken??

I can honestly say that I try to do for James the best I know how. He is such a joy to be around but that joy had been gone these 3 weeks. I havent heard him truly laugh in 2 weeks. My heart is just broken right because I miss is happyness.

I am not only homesick for my husband and life, but I am homesick for my sweet James. I have been trying my best to get him to play and do fun things. And he will have fun but it just isnt like he does when we are home. At home his joy is contagious to everyone around him and here I just feel that people see him as the cranky 2 year old. At home when people talk to him he lights up and tells them a joke. Here he yells and hits his head on the back of his chair.

I miss him!

McWane Center and other tid bits!!

2010-08-30T17:50:00.000-07:00

We have officially entered the LAST week of therapy camp, and I am soooo ready. Dont get me wrong I have so enjoyed seeing James progress so much here, and the Ronald McDonald house has made this long stay away from my family less sad. But I am ready to be back on my own bed, see my husband, my dog, my cat and my very own stuff! I know that James is ready to get back home too. He just isnt himself here. He is still sweet for the most part but boy oh boy does he have a short fuse.

Tonight there were a LOT of people in the dining room ( the dinner was YUMMY) and it was noisy. James just doesnt handle that level of noise very well. He played with the kids for a bit but we had to leave and let him eat in the room because he just couldnt take it anymore. It is hard to see him get so upset and overwhelmed by it all. So I know he will be happy to be back home. Even if it will only be short lived. ( Ill get to that later)

I took James to the McWane center today. The RMH gives the families a pass for the zoo and McWane center. How nice is THAT!! I was concerned that there wouldnt really be much for James to do , but I was suprised that he was able to participate in a lot of activities. He LOVED that there were buttons everywhere and he could push anything. It is a hands on kids science center for those of you that dont know. We had never been and I really want to come back with Josh and spend the day. I will post the pictures I took later.

Tomorrow we will begin our last week here at camp and it is a little bitter sweet. James has progressed SO much that I just cant wait to show everyone how much stronger he is getting. We still have a long road of hard work to go before he is walking independantly but he is on his way! We have amde such great friends here at the RMH. I have enjoyed our dinners together and just getting to know each other. We have heard some very sad things and there have been some families that have lost their children while we were here as well. This house is not a vacation spot but it is safe, beautiful and a home a way from home when you need a home life envoronment the most. I have really enjoyed it here. And when one of the ladies asked me to tell James' story for the RMH newsletter I was more that happy to do so. I will never look at those little donation boxes at McDonald the same. So plan to hear some ways that YOU can help me give back to our home for the last 3 weeks.

Well my little man is sound asleep and I am going to do a little work before I join him. I will let you know how tomorrow goes!!

Turning 32 at the Ronald McDonald Hose

2010-08-28T21:00:00.000-07:00

As a kids McDonald parties were really fun. You got to eat cake and chicken nuggets, sit in a big throne chair and play in the ball pit. WELLLL having an adult birthday at the Ronald McDonald house isn't as much fun come to find out. No ball pit to play in, the "throne" isn't as regal as one would wish for and my chicken nuggets got stolen!!

Yep that pretty much sums it up for today. My Mom, Jenda and the kids come down to see me today. That was GREAT! I needed to see some faces of people I loved around. I have made some great friends here but I am officially homesick. So it was good to have people that love me around. Mom brought me her Pot Roast which I usually request for my birthday dinner. And they brought me a nice big chocolate cake. They didn't get here until a little later in the afternoon so James was a little in the cranky and tired side. Jenda took the kids to her mothers and mom and I got to hang out. James had to lay down for a nap ( so did mom hehehe) . It was nice just to be in the room with her again.

So after they left, James took a good long nap. When he got up I was ready to go downstairs and eat my yummy birthday food. But it was not meant to be. Someone decided that it looked toooooooo yummy and they took it. I had it labeled and it was sitting right beside my bin. But I guess they were SO hungry that they lost all compassion and ate it anyway. SIGH!! Since James had napped so long we missed the house dinner, so I had to walk down to Moe's and get us something to eat.

Did you know that Moe's wont take your credit card if you don't have your ID with you??? I didn't but I do now. I keep my card in my little ID badge they gave us at the house with our room keys so I don't have to carry my purse around. But I don't have my license with it. And Moe's wouldn't let me pay unless I had my ID so I had enough cash to buy James' food but I had to leave my nice big black bean burrito there :-( SIGH again!

Well here I am in my room tonight and I have decided that I am declaring a Birthday DO OVER!! I refuse to turn another year older because this birthday just doesn't count. Yep that is what we will do! HAHA! You think I can just refuse to get older but keep the cake part???

Camps days #6 and #7

2010-08-26T20:56:00.000-07:00

Going to combine since I forgot to post yesterday! oops! Well if you have been following on James facebook page, I am sure you saw the abundance of videos that I posted yesterday. James had a great session on Wednesday. He had an early bedtime and I have discovered that a little Baby Advil is in order for out little man. He is sore and that seems to get him through the soreness. His daddy also surprised us during therapy with a visit!! James and I were very excited. Josh got to see in person James walking in his canes. He loved it!!

After therapy, Josh and James took a nap and I took a little break from having a 2 year old attached to me 24/7. One of the housemates here at the house discovered that I was a photographer for Now I Lay Me Down to Sleep and she asked me to come and take pictures of their son. God has given them the gift of time but sweet little C's time here on this side of heaven is nearing a close and I was happy to be able to offer my services to his family. I ask that you pray for this sweet family, and pray tot he God of miracles that His will be done. We know that he promises healing and I know this family longs for that healing to be on this side of heaven.

But after my session, I went over and sat by myself in the living room . It was nice to just relax a bit. I went and woke up the boys after a few minutes and we all came down and had dinner. Josh got James to eat an entire piece of pizza! And everyone was so shocked that one of the other moms actually took a picture of it LOL! Daddy has the magic touch I guess ;-) It was sad to see Josh leave but I am glad he could come down.

Today was another successful day at camp. James had a few meltdown with frustration but they were eased by the new listening therapy program that we started. It is specialized music that plays at a specific frequency and modulates to match brain wave patterns. It is used for a variety of sensory issues, but the therapist here use it on post rhisotomy kids that are having some sensory issues like James. We think he is getting overwhelmed when the gym gets crowded and loud. But when when we put the special headphones on he calms down. James has always been very musical and this is right up his alley. He isn't a great fan of the headphones but he asks for the music. Or as he calls it "My music" So we are going to use it for the rest of camp time and see what difference it makes. Anything that will help his PT goes smoother I am ALL for.

I did a Mommy no no today!! I asked the therapist what she saw and James' walking chances. YIKES!! This is a no no because without fail the therapist will either tell you they don't have a crystal ball or give you a VERY low ball answer that will crush your spirit. So I have learned to words these questions very carefully. I want an honest answer but I know they they cant see the future either. So I asked what she saw ans James' strengths in his potential to walk. I was shocked at her answer. She told me that she thought James would be walking with his canes ( if we keep up the hard work) in 3- 6 months. I think she expected me to be disappointed but I know there isn't a magic "fix James pill" and this answer was exciting to me!!

St. Louis told us that they saw James being able to use canes by kindergarten and taking independent steps by age 8. And just 9 week he is already in canes and doing really well with them!! I am thrilled with that!! So it has been a great last 2 days of camp. We are also going to go on Monday just so that James sticks with his routine. We think the change was part of the cause for the meltdown Tuesday. So instead of just handing out Monday we will go in and just watch int he stander for a bit.

I think that is it for tonight! I am going to try and get some sleep tonight

WHO sucked all the happy from the room??

2010-08-24T10:54:00.000-07:00

I don't know who did it, but they need to bring it back right now. James has been just awful this morning. I do not usually use those words to describe my sweet baby boy BUT today I do. He woke up screaming this morning after not going to sleep until almost 11pm, and then he refused to eat. That has been par for the course here at the house. If you have been reading my blog very long you know that eating has always been a struggle for James. He likes to live on the edge of the growth chart to give me something else to worry about ;-)

But today he took an extra dose of unhappy and then proceeded to share the "love" with everyone he came in contact with. Normally people that meet James talk about how he is the SWEETEST child on the planet. Always has a smile on his face and is always laughing. Not today though! We walked over to therapy camp after a few time-outs along the way for hitting. Therapy actually started well. He did great during the heat and massage portion ( I would too) But as soon as he was asked to do any stretches or work it was over. The pt was great with him. She was firm but not overly so. We both tried to distract him and make it as fun as we could but after he reached out and bit the pt I knew nothing was going to work except a nap.

He got a few timeouts and they even tried to change therapist to see if he would respond better. He bit that one too :-( I was SOOOOO mortified! Those of you that know me know that a ill mannered child is probably one of my biggest pet peeves. I have seen what happens to children that are not given limits and the types of adults they turn into. That will NOT be my son. I know he wont be perfect but being polite and well mannered is not a choice in my home. So when times like these come up and I have to put actions to my words it is hard.

I now realize why my mother used to say "This hurts me more than it does you" she wasn't talking about the physical pain but the emotional toll it takes on a parent to want your child to behave and when they don't ,how emotionally it is painful to have to correct them. I "want" to just give in and just let him get what he wants and be happy in that moment, but at what cost to his future. I try to keep that in mind. God has given me and Josh the responsibility of raising not the child James but the man of God Christ wants him to be. And I try to take that seriously.

So even though therapy was pretty much a complete bust, they gave us this cane to practice with this afternoon. I plan on do that after James' nap. Then it will be EARLY bedtime for grouchy pants!!

Camp day #4 and the Weekend

2010-08-22T18:34:00.000-07:00

I have been having issues with Blogger so I have been late in posting up my post about James day #4 but finally Blogger decided to let me post. Here goes!!

Friday we had to take a little 20 min drive to the office of another PT that is apart of James' therapy team for camp. This therapist is the guru for stretching the post rhisotomy kids and I no agree! So does James!! But unlike the screaming matches James and I have over his stretches at home , it was a pleasant experience for James. She started out with putting hot pads on James legs for 20 mins and then will massage oil doing a deep massage and then the stretches. During the stretches James kept sighing. The therapist and I were cracking up :-)

After his massage, James worked on his tall kneel exercises. Then over to the big red ball. We also did some wrist extension exercises. I wish I could explain better what all James does in the 3 1/2 hours but they transition so well from one activity to the next it and so often it is hard to list them all. I just know that James is working HARD!!

So since I have talked a lot about what James is doing in therapy. I wanted to say a little bit about what I am going through here away from my support system. Josh and I have a great support system in my family. Unfortunately we are not close with Josh's side of the family. We are grateful for my family,and the love and support they have given us not matter if the agreed with our choices or not we always know we have a soft place to fall. Being away from that I feel a bit lost. Dont get my wrong I am in a nice and safe place here, but its not home. Doing everything 24/7 myself for James can get lonely and difficult. I dont think I realized just how much Josh and I were a team. I miss that. We did get a visit from Josh this weekend and that was great.

James hasnt been eating if we are downstairs, but as soon as Josh showed up James was his happy self and ate like a pig. It is hard to see the stress that being away from home causes James but I and trying my best to keep my eyes on the years down the road outcome. And the stress we are taking away from that life. It is a balance that I dont always succeed in but I try. Saturday James and I had a fun adventure. The Ronald McDonald house has passes to the zoo and a few other attractions here and we were able to go to the zoo. It was really hot but we had a great time.

James and I rode the train and I let him decide where we went. I figure the little guy doesn't get to decide much in his life he can at least choose what we see at the zoo. We spent most of our time at the kangaroo house and with the birds. I didnt want to see the Big cat because he told me they were scary. So we saw less scary animals :-). He LOVED the birds and took us back there a few times. After some strawberry ice cream and a trip to the gift shop we headed back home for a nap.

Oh and as a little note. We will be here for 3 weeks! I thought this was a 2 week program but when I was looking at the schedule I noticed that we are actually here for 3 weeks. Going to be hard to be away for that long but WOW what progress can James make after 3 weeks!!

Camp Day #3

2010-08-19T14:11:00.000-07:00

James and I almost didn't make it to camp today. James decided to wake up at 3am this morning share a happy "Good Morning" with me. I hear his calling good morning and when open my eyes I see little fingers waving and me from behind the half wall that separates my bed and his crib. It was pretty cute but would have bee cuter had it actually been morning. After about an hour of James serenading me with his raspberries on his arm, he went back to sleep. Needless to say it made for a late start to the morning.

We did make it though and had a great camp. James did LOTS of sit to stand activities today. Normal he has a little table in front of him that he will put his hands down on to help him stand. NOT HERE! He has to put his hands in front of him ( in a prayer position) and stand using just his legs muscles. He did 20 reps of that!! His little legs were noodles after that. He did it though because the pay off was getting to roll cars down and slide and what 2 year old little boy does enjoy that.

After his 3 hours of PT he had 1 hour of OT today. She wanted to do some testing on James but after 3 hours of PT she did really get great cooperation. He just keep putting his head down and saying " I go night night" *Mommy's heart was breaking at this one* But the trooper that James is, he did the whole our and even had a little fun in the process playing with the kitchen toys. Although I was concerned that he kept telling the therapist that he burnt the toast! He must have gotten that from my mother :-) Sorry mom didn't mean to throw you under the bus here!! haha

After camp we got to go have lunch with one of James' facebook "fans" that was in town and had contacted me. I just LOVE meeting the people that have prayed for James for so long. It really is nice to put a face to the comments. James was tired but a flirt! He thought her 11 year old was really cool because she was playing her music for him. It was a nice break from the therapy life we are living right now. So thank you Leslie!

After James' nap this afternoon, I think we are going to take a field trip to Wal-Mart and get some things. James is having muscle soreness from all the extra work so the therapist suggested some warming massage cream. Not really exciting events after therapy but we are doing well . This weekend I hope to have LOTS of pictures ( if blogger will start letting me upload them) because if the weather cooperates I am going to take James to the zoo. YIPPIE!

Camp Day #2

2010-08-18T18:54:00.000-07:00

Whew!! I think I could just post that one word and it would just about sum up what I think about this intense camp experience. I am learning so much and what James needs to be getting in physical therapy. I hope our home therapist are ready for me to come back because I am being armed with some good stuff ;-)

James' session starts out with warm compresses on his legs and back, then they do a 5 min massage to get his legs warmed up. After that they do a series of stretches but all desquised at games that James actually enjoys. Today we worked a LOT on his tall kneel. This is something that we have done at home but the level of reps and intensity James is being asked to do is unbelievable. I didnt realize that he could be pushed his far and DO IT!!

He had to knee walk in what is call tall kneel. This means that he is up on his knees only and cant sit back on his bottom. He had to do a puzzzle inthis position, but the catch was that each puzzle peice what at the other end of the table and it took him about 10 side steps on his knees to get there. THEN he had to bring the puzzle peice back ( 10 more side steps) and put the peice in its place. Might sound simple but this was hard work for James when he has never even been able to get into tall kneel before the surgery.

We did more big ball excersies as well. James got to take a break after a bout an hour and half. Even on his break he had to stand in the stander but he didnt mind because he got to play with playdoh with one of the UAB pt students. She was cute and James was a flirt!! hahaha At the end of the 3 hour James got to walk out using this quad canes. He did even better than yesterday. The put blues clues stickers on his shoes and the canes to teach him the process. I think my jaw stayed on the flo0r because I just never imagined him in canes just 8 weeks out from the SDR.

After therapy we got a special treat becuase Josh came down to see us. It was SO great to see my husbands sweet face. James was happy to see his Daddy too. We got to hangout and eat dinner together. Tomorrow we are adding a little more work ( I know crazy) for James. We will start his OT part of the camp as well. So that means that he will go 3 hours in PT and then have a lunch break and come back for an hour of OT. That is a reciepe for one tired baby!! I am glad that he went to be tonight at 8:30 without issue because he is going to need his rest!

Camp Day 1

2010-08-17T10:14:00.000-07:00

James and are in Birmingham for an intensive therapy camp. Today was his first day in therapy. Our focus for these next two weeks will be walking and strengthening. We will also be working on getting James a little more independent in using his walker or canes!! I never really expected him to be using canes right now but as of today those expectations are on my high list!! I say that because today I watched James take his first steps using the quad canes.

Ok first let me back up. We left after I had a doctors appointment that I learned I have a hernia...great! not! I am sure it is from all the lifting and tugging I have to do everyday with James. And it really isn't going to change much until James can get a little more independent in his everyday tasks.. After the appt, we hit the road without a place to stay. The Ronald McDonald House doesn't take reservations and when we left they were full but I just put it to prayer that a room would open up, and about 20 mins before we got there I called and they had just gotten a room for us :-) We got here and I was impressed by house nice it is. So clean and everything is really new looking and perfect for kids. Our room is really clean and nice. They also provide dinner every evening which is a huge money savor. Now the downside for us is that Josh can't be here with us. We haven't been apart this long in over 6 years and it is a little scary to be doing all this without him but it really is an opportunity that we cant miss out on for James.

So back to today's therapy. The center here is much larger than our at home. It is obvious that they get grants through Children's. Our therapist is really nice and very focused which I like. She had a clear plan for not just today but also the 2 weeks we will be here. We started out talking about James pre-op and how the SDR has changed his body.

I sort of sat back and let her work with James. She did really great with him. She made everything into a game but still really challenged his body. I was surprised that she jumped into the hard stuff right of, but I guess that is why we are here! She did some of the stretching we have been working on at home doing and then she did some big ball games. I have pictures and videos but blogger isn't working with me right so you can see them on the facebook page as well.

After about an hour of strengthening activities the PT moved to standing and walking. He got to take a break by standing in a stander and eating a snack. There were a lot of other kids in the gym and several came up to play with James. It was cute. One little boy brought James a car but James really wanted his Blues Clues sticker that he had LOL! After his break the pt brought out the canes. They have bit of a different philosophy than our home therapist. Here they want to get them in canes as soon as possible because they feel walkers don't give the best postures. I can see the pros and cons of each side really.

James did amazing in the quad canes! The therapist even said she didn't expect him to be that stable. She told me that she felt we shouldn't put him back in his walker! SHOCKER! I guess we will see how at the end of these 2 weeks he is doing before we make a big choice like that. But it really makes me excited to think of James being able to walk using canes. That opens up his world so much more!

I guess to wrap everything up, it was a great first day. I didn't expect to have as much to say about it as I did but they hit the ground running and I LOVE IT! I am so excited to see what James is doing after this camp. Maybe we can go up to see Dr. Park using canes ...wishful thinking but it is my heart! James is wore out and currently taking a nap and Mommy's isn't too far behind him! See you tomorrow for Camp day 2

We ARE still here!!

2010-08-03T11:51:00.000-07:00

What a busy summer this has been. Not only the surgery but my photography business has really kept me on my toes. I am not complaining because it has been needed income for our family with all the extra medical costs. Just wish I could get 5 more mins of sleep ;-)

I have been lacking on keeping up this blog and it isnt because I dont want to, more of just having a minute to sit down and type everything out. James has been growing stronger everyday. He is really wanting to walk everywhere he goes. I have been trying to really let him have that mobility but boy is it hard on my back. I have be advised by therapist not to bend over to help him walk so much but that is coming from a therapist mindset and not from someone that lives with a 2 year old that wants to be walking. I just can look at his face and tell him to crawl when he asks me "Mommy I walk now" So me and my chiropractor might get to be best friends but my son will get to walk!!

We will also be headed down to a special intensive physical therapy program in 2 weeks. I have worked it out to where James will be getting 3 hours of PT 4 days a week with therapist that are very used to kids post rhisotomy. I LOVE all of our home therapist and they are GREAT at what they do, but I dont feel we can get that intense strength building that St. Louis recommend due to such full schedules. All we can get right now is 1 hour sessions, and that is great for day to day but I feel that James need s little boost to get his strength back up.

I aslo really want to bend the ear of the therapist that have 75% of their work load rhisotomy kids. I dont know what is "typical" post op and our home therapist dont really know either since they have never worked with a child this young right after the SDR. So some of the habits or issues we are dealing with concern me and I an not getting very clear answers. I get a lot of things I am doing wrong sometimes but not much encouragement that we are doing things right. It can be frustrating to walk on eggs shells and know that your therapist talk about you when you are gone. But I have to throw MY ego out the window and realize that I am doing what is right for OUR family and lives and it is ok if some people dont like me. Ahhhhh to be a "typical" mom would be nice but that is not our life and that is ok :-)

We have some BIG things happening in our family life right now as well. I will talk more about that when plan are a little more firm ( and no I am not pregnant) We are making some really big grown up decisions about or lives and what we want for the future. We are seeking God's plan and we know that He will guide us in all we do. I am looking forward to seeing what God has in story for us.

So that is where we are today.

6 weeks Post SDR

2010-07-23T11:35:00.000-07:00

Well here we are! 6 week Post SDR surgery, and I couldn't be happier. James is really progressing so well, and I am really excited to see what the next few weeks and months will hold for him.

James has worked so hard to build his strength back up. We have hit a few road-blocks with sickness and just plain ole stubborn-ness but overall we is has been a smooth road. I have tried to find some intensive camp-like therapy but there isnt anything even close to our area. The only option that we have is in Birmingham and you have to be 6 months post op to go. So we are still looking into that but for right now we are sticking with our course of therapy.

6 weeks post op James can now crawl for up to 15-20 feet on his hands and knees, He can sit criss-cross ( Taylor sit) and he can even get in to side sit all by himself. As you saw in the videos, he is taking steps under his own weight and they are actually getting him places. We are still working on moving those steps into his walker.

Other little things that we didnt really expect are exciting too. James is talking much clearer and in long sentences. I have been able to understand him but now others can too! His hand movement is much better too. He can grip things tighter and pick up smaller objects. Another cool thing is that he seems to be switching from left handed to right handed. Which we always thought it was right handed because he has always stabilized himself with his right. So I guess we will see which hand he uses as we go along. As long as he can use one with quality, I don't care which hand it is.

This 6 weeks has gone by so very fast, and I am sure there are so many little things I am forgetting but I spend my days with my chin on the floor that it is hard to stop and make myself remember each little detail. That is why I try to have my cell phone with me so that I can video all the little things. In a way I feel like I am reliving his first year because I am getting to see all those milestones that I "missed" out on. I use quotes because I dont think I really missed out on them but instead God has allowed me an even sweet prize. I get to be so head over heels in love with my son and have more life under our belt. That just makes seeing these milestones even more exciting. It is also great to see the joy on James' face and how proud he is of himself.

Speaking of that sweet face of James. I have some new pictures to share of James. One of my photographer friends took James pictures and I LOVE them!! Kelly Clark Baugher Photography ! She is so talented and did a great job at capturing my son's spirit. I am happy to call her not only a peer but a friend. Thank you Kelly!!

Days like Today make it worth it!!

2010-07-20T12:32:00.000-07:00

Every once in awhile I will get asked if all the therapy and stress we go through is worth it, and why dont we just let James use a wheelchair and move on. Well all I have to say to those people, well meaning you might be.............Watch this and tell me that James will never walk!!!!!

Sometimes it just sneaks in

2010-07-06T12:59:00.000-07:00

When your child is born you are full of hopes and dreams for that little 1 min old child. You make plans, and then some doctor takes all those dreams away. Or that is what is feels like anyway. I want to be that family that has is altogether and moves on with life. I try my best to be that. And 90% of the time I would say that I never even think about those two words that have changed my life forever. Most days we just live our lives.

Yes, some of our dreams for our children and our family have changed but 90% of the time we just live life and move on with our new dreams. The funny thing is, they aren't plan B dreams. They are just new dreams that I never knew, I always wanted. My life is happy, my child is happy... I am happy. But there is that 10% of the time, where those 2 words sneak in....Cerebral Palsy. In those short seconds of time, you are brought back to when the rug was pulled out from under your world. In those brief moments, you wonder " what would our life look like right now if..."

Well this weekend I had one of those 10% days. We had the BEST time at my parents campsite on the 4th of July. All of our family was there, the weather was perfect and it was so much fun. We grilled, swam and made s'mores. It was the perfect 4th of July festivities. Except for those 2 words that sometimes float over me and attack. I was having such a great time with my family, and those 2 ugly words came to my mind while I was watching my nephews fly down the hill on their razor scooters. They were laughing and having a great time and my mind jumped to the
"If James didn't have Cerebral Palsy he would be doing that right with them" It is just a moment, a blink, but in that blink my heart falls 10 stories to the pavement below. I find myself watching typically developing children and wondering what James would look like doing those activities. I see a glimpse of the "What if world" and I want to fall apart. That is not an option for me because it is only a blink. By the next breath I have to bring myself back and move on because James needs me. James needs me to dream BIG and be his advocate, and expect success from him.

Then I come back to the 90% of my life. And this Life is wonderful. I have a son that I love more that the air I breathe. He is so happy and fills my life with such joy. The dreams I have for him are SO BIG!! And I do expect GREAT things from this little guy. He has proven to many wrong over his little life, and even though I got his "evaluation" today that belongs in that 10% of my life. I am going to keep if right there and not let it creep into my 90%. I don't agree with many things on that form. I know my son will do great things in his life.

I am SO happy that God has allowed me the opportunity to raise James and be witness to miracles here on earth. So even though there is a 10% that sometimes follows me and tries to steal my joy........ I choose to live my life in the 90% today and be happy that I have a sweet beautiful son that is doing so well and is such a joy!

I want to .....

2010-06-29T15:04:00.001-07:00

Whine!! But I am going to refrain. .....for the most part ;-) And this rant is not directed and anyone person or therapist but instead my feelings and frustrations on the whole!! I WANT to whine, kick, scream, yell, cry but most of all I want to sleep. Lets just be honest here, today really stunk! I am going to give this first paragraph to the whiny side of me and then move on. James was grumpy and very uncooperative in this therapy session today. I am frustrated that we don't have clear goals and certainly we don't have a clear plan to meet goals. I am frustrated that I am made to feel like a hovering or overprotective mother when I make therapy suggestion. I realize that our wonderful PT ( and I really to mean that!) are highly educated and I have every faith in their abilities but I am no dummy either. I spend at least an hour of research on James's condition everyday and feel that what I bring to the table is valid. I AM his mother and DO deal with this everyday on a REAL basis. I am a former teacher. I like clear and obtainable goals.

Ok rant and whine session over!! I feel better to get that out and now I can talk about the good that happened today.

Last night my sister can to help me with painting James' big boy room. I am thrilled with how it turned out. Wanna see? OK!

It also has a pterodactyl painted on the other wall but my camera memory card was full and I didnt have the energy to empty it. My sister talked me into these super bright colors, and I am so happy she did. I love them!! They are so bright and fun and JAMES!! You see him in the bottom left corner sitting in his "Thinking Chair" my friend brought for him. He is in love with this chair and we just carry it around the house for him to sit in :-) He wakes up asking to sit in this chair.

As for Post Surgery progress, we do have some good things to report. Today during OT James was happier. He loved playing on the scooter board. He pushed off walls and got pulled by Jordan. He had a GRAND time with that. And me and his OT were happy to see that he could hold a grip for such a long time.

Speaking of Jordan!!! Oh how I love this kid. She isn't a kid anymore, but instead a 18 year old young woman. I have known her since she was 4 months old when I babysat her and her brother. She was my little sidekick then and happy to say she still is. She comes Tuesday and Thursdays to be my extra hands during therapy. I look forward to her coming too!! It is nice to be able to talk with the therapist while she has James. I have her until the end of July and I think I might cry when she has to go to college!!

Well I have finished off a bag of banana chips while typing this post as I hide in my bedroom. James is happily watching a cartoon and I decided to take 5 mins of Mommy time to vent and put on my happy face!!

Update on Progress

2010-06-26T16:34:00.000-07:00

I will get back to the picture post in a bit but I wanted to document what is going on in our lives right now. I feel like things are going by so fast that it is hard to find the time to sit and type it all out. But I use my blogs as a place to document our lives, almost like a baby book for James. So I wanted to get some of his progress down. James is just amazing me everyday. I know people wonder why I walk around with me chin on the ground, but it is because I am in awe of this little boy.

I mean this picture that you see above might to you just look like a kid sitting watching TV. And on the surface it is BUT to me it is 2.5 years of tears, PT,OT , and LOTS of tests. To me this sit is a victory. It means that my son will be able to join his peers in circle time at school. It means the first step to independence

I have said it before, and I will say it again, I am a self professed Momma Bear. I will be the strongest advocate for my son that I can. I am not always popular with therapists and some frankly just dont like me. I have learned to agree to disagree with some and other we have moved on to greener pastures. But when I see sights like this I know that all those meetings are worth it. I guess some would say that the teacher that gets my son is in for but I dont think so. I hope I am the type of parents that I always wanted in my classroom. One that loves their child and wants them to succeed in life. A Parent that will help the teacher give their child the tools to make that success a possibility. BUT I do expect all that work with my son to be striving for success and if I have to make sure we stay on track so be it ;-)

Several people have asked me where we receive physical therapy. That is a complicated answer, but here is the short answer. We receive PT and OT with United Cerebral Palsy and Huntsville Hospital Pediatrics. All of our therapist are so wonderful with both agencies. We go to different agencies because each place has their own philosophy. And each has a different style. I like for James to get the best of both worlds. There are things that I love and things I dont like with each agency so in my opinion when we go to both we get a more well rounded therapy program.

James has started his 5 day a week program.

-On Mondays we have a therapist come out to the house and that is great because it is one day of the week I get to stay in my pj's just a bit longer ;-) James too!

-Tuesday and Wednesday James receives Physical therapy at 10 and right after he gets Occupational Therapy.

-Thursday James gets PT and then Speech therapy right after

-Friday Is WATER day. He and I both look forward to this. It is physical therapy in the heated water pool. Aghhhh!

All of these therapies are in the morning. After James' nap, I do his home stretching program that we were given from St. Louis and then before bed he does his treadmill therapy. If is sounds like a lot, that is because it IS. By Friday I am lucky to be able to say my name and little James is pretty tired too. So Saturday and Sunday are rest days!! I do some stretching but try to make it VERY fun for him so he doesnt even think he is working.

So far James's speech has improved leaps and bounds. His speech therapist said that she is amazed and feels that James is making more age appropriate sentences. He is clearer and I have noticed stringing more words together post op. In PT we are struggling with James putting weight onto his feet. We think that he is still having nerves pain in his feet but that is normal and is supposed to get less and less each week. That has seemed to be the case so far. Everyday James shows more strength and that he is more willing to apply pressure to stand.

James is also able to reach his hands above his head now. If you are on facebook you saw this cell phone pic I took..

Again it is another milestone! Pre-op his arms would stop about shoulder length but now he can get those cute little arms way up to the sky! On the walking front....we knew that the SDR was the starting point for James' journey. And that is so true. James is young and so his willingness for therapy can make things difficult right now when he doesnt know what is going on with his body. But he is such a hard worker that he tries everyday. I think that alot is fear. He doesnt believe that he can hold himself up and doesn't understand how to move these new muscles but I know he will get there in time.

We are 2 weeks and 2 days post op and I am SO impressed but how many improvements James has made so far. I cant wait to see what the next week holds for us.

St. Louis in Pictures Part 2

2010-06-21T14:50:00.000-07:00

St. Louis in Pictures Part 2

James looking like a sweet angel sleeping the night before surgery. And the rest of pictures of the day of surgery Pre-op

Getting to pick out his smell....he picked Bubble Gum!

All the toys to keep him contained for the 1hr wait

I was a mess but trying to put a smile on my face

SO Silly!!!

And Now we wait........

St. Louis Part 1- In Pictures!

2010-06-21T13:47:00.000-07:00

PART 1 of our SDR Journey in Pictures

Our first real day in St. Louis we went to the Science Museum and had a great time with my cousins Martha and John. James loved being able to touch everything. Here are some pictures from that day. I am planning on doing series of pictures only posts with all our pictures from the trip and surgery that I didn't put on facebook. ENJOY!

I thought this was so neat. It is a REAL Mummy of a 7/8 month old child. It was so heartbreaking for me to think of the grief this mother felt even 2000 years ago.

James the Center of the universe!!! Or at least I think he is ;-)

Quickie!!

2010-06-18T11:58:00.001-07:00

I just had to pop on here and make a note to document our first BIG milestone! During our morning stretches James was able to lay on his belly and kick up his heel one at a time to his booty! We are so excited because this was something that we could have NEVER tried to get him to do. So cool to see these milestones everyday!!

First Home PT session

2010-06-17T20:06:00.000-07:00

Today began the first of many physical therapy sessions we will take James too. I was excited for his therapist to see James for the first time after his spinal surgery. It was sort of strange to be taking my child to a physical therapy session just 7 days from having a major spinal surgery. Wow, God is good!

We are officially 1 week from surgery and James has made some great progress. He can now roll from his back to his belly. He can get onto his hands and knees and even make a few crawling movements. He gets pretty tired quickly but after resting for a min he is back and working on building those muscles right back!

We are still finding muscles that he can now move that he was never able to move before. Like pre-SDR when he would lay on his tummy he could lift his legs (straight) about half an inch of the ground. NOW he can lay on his tummy and kick his bottom or lift his legs straight several inches off the ground just like normal! It is amazing. I also noticed that when I change his diaper he is much more comfortable. I think I could sit here and list all the cool things he can do but the list would just keep growing!!

The PT today was very impressed with his new body. She is excited to get him on his program . I was surprised at how nervous I was for other people to touch and move him. I am trying to work through this but I am so afraid of someone hurting his back that I find myself hovering! UH OH.. am I becoming a helicopter mom??? I think my dad and husband might say yes LOL!

James has been very clingy to me. I know this will pass so I am enjoying every snuggle I can get! When that sweet little face looks and me and says "Mommy hold you" Well I melt and stop whatever I am doing and hold that baby!

I am so grateful for all of your emails, notes, dinners, and facebook comments letting us know you are praying for us. They have meant SO very much to me. God has been so good to us and has shown us so many wonderful miracles that I look forward to what He has in store for us. I can't wait to repay this love and encouragement that God has lead so many of you to offer!

I hope you are looking forward to following James' progress! I am going to try my best to post everyday and really make this a journal of this incredible journey!

Day 2 or PT and coming home

2010-06-16T14:28:00.000-07:00

James is still having difficulty with being put in the sitting position, but it is getting better. We think he is having some nerve pain in his feet that we were told might happen. His little nervous system is trying to workout what has happened to it and it should calm down in the coming weeks. We had an amazing therapist that was so energetic and James really liked. Well all of the therapist were amazing but Micheal was something extra!

We worked on sit to stand activities and some walking as well. I was amazed that just 4 days post op James was holding his own weight on his feet. The scissoring ans cris crossing that he was doing pre-op was gone! I know I went through these sessions with my mouth wide open in amazement at what I was witnessing. I had read about what to expect and I had seen other videos but when you see your child move muscles that he has never been able to use in his 2.5 years here on this earth. It is very surreal to be apart of this journey.

Dr. Park came down to the therapy gym to see James . He was very happy at his progress, and he said that everything James was experiencing nerve pain wise was very typical and will go away.
And now the Trip Home! Post-op Day 5 and it is time to go home. James slept really well. We went to our finally PT session. This session was a lot of making sure we understood the stretches and if we had any questions. The therapist did a few things with James. He crawled and practiced his walking and did a little sitting. Then we went over a lot of the precautions about how to hold and carry him. These precautions are a little intimidating let me tell you!

After our PT session we packed up, got his prescriptions and off we went. The first hour of our journey was rough. James' meds had not kicked in and he was really uncomfortable in his car seat. I just started praying that he would be ok. It is so stressful when you know your child is in pain and there is nothing you can do about it. But after a very loud , stressful first hour James calmed down and was able to relax. He feel asleep after a little while. So did I! I fell asleep in Il and woke up 77 miles outside of TN!!! Josh had been flying!! He said that all he wanted to do was get his family HOME. We made the 8 hour trip in 6.5 hours. We only stopped once to use the restroom and grab a bite to eat.

I love the sites of MO, IL and KY but boy, oh boy did it feel good to cross that Alabama state line. We pulled into our driveway at 6:27pm and were greeted by our sweet Lab sushi and even the chickens seemed happy to see us :-)

My sister was here and she has cleaned our house and set up James' big boy bed. So here we are, starting the recovery journey. So far it is going well. James is having muscle spasms and having a hard time stay comfortable. He wants to play but just doesn't have the energy. I know ut is going to take some time to get back in the swing of things but we will get there. Tomorrow is our first day of home PT and I am looking forward to our pt seeing how many changes in James' boy there are!

Jump In for James

Here we go again!

If today were different

Its that time again and CP Connection

Being my friend is tough

What could have been

3 weeks Post op

Little Movements that move mountains

A Journey in Pictures

This time next week

Fear and Anxiety

What is PERCS and why does he need it..

A 5 second post for the best 5 seconds of my life

James 2011 SDR Progress.wmv

Birthday Pictures

Happy 4th Birthday James Patrick

Been a long time...

Finally something to say..

May

This time Last year...

Transitions in Life

Happy Mother' day

Just 1 more..

John 13:7- Tornado Outbreak

This is what Hardwork looks like *warning video is hard to watch*

I LOVE the number 5!

I wonder?

Camp Snap shot of our Camp day * Picture Packed*

Thinking about letting the Blog go??

BooBoos and Crashes

May Camp Day #2 LOTS of Pictures

Camp Day 1

Here we go again!

Just a word

Hi!

Blah!

9 months ago this week.. LOTS of pictures

Horseback Riding Lessons

PLAY! Sharon Johnston Playground

Pictures make me happy

Routine? what routine?

Reality

Good ole James update

Mommy Guilt

My Blog, My Soap box

New Design for the New Year

What I see...

Jesus' word will find you

Merry Christmas

Christmas through a photographers eyes

Looking Back

Thanksgiving and the Family

Ortho Update

The view from here

Shelter in the Storm

My Anger Vent

Quickie!

Take my Breath Away!

Dear Pre-School Teacher

Happy Birthday Sweet Baby James

Did you think I had left you??

We made IT!!

Hives and Homesickness!

McWane Center and other tid bits!!

Turning 32 at the Ronald McDonald Hose

Camps days #6 and #7

WHO sucked all the happy from the room??

Camp day #4 and the Weekend

Camp Day #3

Camp Day #2

Camp Day 1

We ARE still here!!

6 weeks Post SDR

Days like Today make it worth it!!

Sometimes it just sneaks in

I want to .....

Update on Progress

St. Louis in Pictures Part 2

St. Louis Part 1- In Pictures!

Quickie!!

This is what Hardwork looks like warning video is hard to watch