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Wednesday, February 22, 2012

Week # 3 and the ER


The "little room" this is the room that you just dont want to be in. and especially if you are away from home. But Monday afternoon this is where James and I found ourselves. James woke up that morning just not himself at all. He was cranky and sleepy and refused to eat anything at all. When we got to PT that morning, and I put him in his walker, he could barely take a step. We thought that he might be just a little sore at first, but as the morning went on we realized something was wrong. James couldnt clear his toes when he walked and was loosing his balance even while sitting. And he was complaining that his neck and head hurt. The PT and I agree that he needed to been seen. So she set up for us to go to the Children's Hospital after hour clinic.  and that is where this picture was taken

 James was also starting to show symptoms that were really scary. See his left eye here. It had wandered out so far to the left that the doctor at the clinic was very concerned and she sent us directly to the ER. They called and had us preadmitted when we got there. On the way over to the ER I glanced at the report she sent with us and it said "Possible case of Meningitis" Well needless to say my foot hit the gas a little harder.
 When we got to the ER they took us right back and had 2 doctors waiting to examine James. One was the infectious disease doctor :-( After both doctor have James a physical exam they told me that they are going to run bloodwork but they were 90% sure it was NOT meningitis. But they were still concerned about his eye and the other symptoms. So they ordered blood work and a CT scan. 
 CT scan came back perfect ( well as perfect as a kid with CP can) and the bloodwork confirmed that it was 100% not meningitis. I  can now breath! But they did discover that James was dehydrated and having severe muscle spasms. So they push some fluids in him and sent us on our merry way. They wanted us to have the PT check him out the next day and make sure his symptoms were gone.  
James woke up a different child the next morning! He was happy and wanted to eat. We went to PT and did some much lighter work.
 The PT's kept commenting on how James was better.

 It was such a relief that he was moving and acting more like himself




 See the little dog on the treadmill? That is Prince. James wanted him to go first :-)
So that is how Week #3 started out. I am happy to say it is going much better now. We are making DOUBLE sure that James is getting lots and lots of fluids that have electrolytes in them.

Sunday, February 19, 2012

Homesick

This is about the time in the program that I get homesick. I am starting to feel some of those feelings but I am also feeling really excited about James' progress. This being our 3rd time doing the Spider program I can truly say that it is worth every ounce of homesickness, every penny spent, and tear shed. In 3 short weeks I watch my son's body transform and his confidence grow. This last week is the hardest but it is also the best. I can't wait to see what the final review shows.

I am already planning what we are going to do when we get home. And for me this is the best part. I am really planning on doing some FUN things! James will still get once a week PT at school and once a month we will come down here to b-ham for PT. But we are going to do swimming and horseback riding and activities that are fun but keep allowing James to develop. And I can't wait!

Friday, February 17, 2012

Week #2 in the books

Well we have finished week #2 of the Spider program. So far we are thrilled with James progress. He is stronger and braver too. He can let go of his walker and open doors, push elevator buttons, or whatever he wants to do.
 In week #2 we have worked really hard to trunk control and balance
 He has also be able to walk on his knees and push the ladder. This is a big deal for James because he is just another step to walking
 James thought this was really fun. He got to pull himself up and down the rope and "Go FAST" as he put it

 Oh bowling! We have learned that James Loves bowling. In fact I think since it is going to be raining this week we are going to find a bowling alley and see if he likes the real thing
 He loves to watch himself walk



 Week #2 also meant that it is time for the Superman cage. This is a contraption that they have explained to me but I still dont get all that it does. I DO know that it activates back muscles. They let me feel his back while he was working and you could really feel it working


 This was his favorite part. He got to pull himself back and forth and make himself fly :-)
 This is a site that I am seeing more and more. Instead of just staying on his knees and looking at things, he pulls to stand on everything. And look how straight and strong his legs look!
 Of course all this hard work means that he is one tired little boy in the afternoons.
 Ok silly James story!! The Ronald McDonald house that we are staying in give tours. Last night they were touring about 30 new volunteers. James was in the playroom and started watching. First he went to the tour guide and asked for hug.
 Then he decided that he wanted to take the tour. I was trying to get him to come to me but he said he told me to "shhhhh I listening!" He crawled over to the middle of the group and started asking everyones name and if he could have a hug
 James is also getting OT while we are here. They have been working on his fine motor skills.
 Today was cutting. What 4 year old doesnt LOVE cutting. I was really impressed with how well he did too
James is such a hardworker. Even when he has difficulty in therapy with being frustrated or his body not wanting to work the way he wants it to...he fights on. I am so very proud of him. Week #3 is coming up and it is the most intense. James will be asked to use all the skills that he has been learning. I am excited to see how his little body will be transformed when we get finished. James will get the chance to showcase his walking skills on a BIG stage Thursday. He has been asked be a model in the Sacs Fifth Ave. fashion show to to benefit the Ronald McDonald house charities. I cant wait to see my baby walking down that runway!

Tuesday, February 14, 2012






Having a buddy is a special thing. Having someone that plays and moves like you do is a gift. These two little buddies are so very alike in many ways. They are only 2 weeks apart in age, have the same CP diagnosis, have had the same SDR by the same doctor. And they might just be the cutiest and sweetiest little boys on the planet. They are just like any other 4 year old boys they like what they like and sharing is something that is being learned. They even fussed over a few toys. It was a typical little boy friend ship and it was good for this Mommy's heart. James has lots of great little friends but he has never been around another kid that moved just like him. Neither boy was ever left behind because the other got us and ran off. They got to chase and wrestle and just play like 4 year old. It was a wonderful week to get to watch James have a friend. 
I mean LOOK they even cheese the same !

James is working So very hard. When we get home in the afternoons he can hardly eat lunch and stay awake.
 Ms. C has learned a few new tricks to help James. We always knew that James' vestibular system was immature. When you do move around at a very young age it stunts your ability to know where you are in space. So to start his day she has been doing some vestibular excersises. 
Here is a video of James and Cliff working on their vestibular system but shhhh dont tell them that!

Ok now here is the best part! James took his very first steps the other day. The Adeli suit he is wearing helped provide the sensory and stability input that he needed but he was all on his own in space! 
Here is a video from Day #1 of James in the Adeli Suit and walking
No here is the difference just one week makes


Almost got it! 
 Ms. C just has one hand on him....
 And here it is! James standing with NO hands touching him or holding him up. He is FREE 

I LOVE this picture. See him sticking his tounge out at himself in the mirror 






 Time to work on the upper body and weight bearing



Here is James pushing the Shopping cart.
And this is the very end of a PT day. James is pooped with a capital P!!!

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