Sunday, January 23, 2011

Good ole James update

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 :-)


Gmama Jane

Good update. There was even some information new to me in there. Have you read my latest blog post? It's all about James. Sorry I didn't do so well with the potty training but I was never very good at it when you all were young and I'm thankful that you & Anna Laura pretty much trained yourself. Poor James & I looked like Laurel & Hardy trying to do the potty thing. That's why I'm glad I'm the Grandmama and you can be the Mommy.


James is so blessed to have such a wonderful mama! Call me anytime you want to chat about therapy or surgery! I know how it can feel isolating! We live it everyday and no one else can understand that! It is our "normal!" I am so glad to see that James is doing so well! He is such an inspiration to our family!

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