James Update
Here he is!! James in his walker enjoying some sunshine, 2 weeks after surgery!
For all of you who prayed, sent words of encouragement, cried, smiled, inquired, and most of all CARED....My Heart says THAN YOU!! I didn't want to overload my blog with James updates but SO MANY of you have asked about his post surgery progress I decided to give you a short update.
As you can see, James has recovered his smile and gaining strength daily. Although James is using a walker, he walked out of therapy on Friday on his own without a walker while holding the hand of his Physical Therapist. Granted, the walk was short and slow but it was a HUGE PROGRESS from 1 yr. ago.
This is the same child Doctors told us would most likely be wheelchair bound for most of his life. This was AFTER we FINALLY got a medical professional to give us an official diagnosis of CP. Get this, one Doctor told my daughter around 9 m. old that James was, and I quote, "Just a wimpy little white boy" and he would be fine...go home and quit worrying...there's absolutely nothing wrong with this boy...he just needs some time to catch up. Close your mouth, pick up your jaw off the floor...Yep...isn't that some kind of professional diagnosis?? Wimpy Little White Boy ...wonder what chapter in Grey's Anatomy that came from??
What can I say?? That is the world we've lived in for the last 4 yr.s...my daughter has had to be her own medical researcher, her son's advocate, and fight like H_ _ _ every step of the way.
Currently...
The local Physical Therapists don't want to follow the PT protocols put forth from St. Louis, simply because they have a philosophical difference with the folks at St. Louis and the approach they take with CP children.
DUH!???..HELLO...the proof is in every step James takes as to whether he should have had the SDR surgery!! Needless to say, my sweet daughter shouldn't have to fight the PT.
Therefore, every 2-3 months Mommy and James spend 3 weeks at UAB for PT camp, live in the Ronald McDonald House a block from the Hospital, just so James can get the Correct intensive therapy he needs to make maximum progress.
The First surgery was in June 2010 at St. Loius Children's Hospital and we like to say he got the "extension package" 2 weeks ago at the same hospital. The Dr. lengthened Jame's heel cords without actually cutting the heel tendon. This technique is not the norm for children with Cerebral Palsy in that the tendon is usually actually cut. Only 10 other doctor's do this type of surgery across the U.S.
St. Louis Children's Hospital!
on the cutting edge when it comes to children with Cerebral Palsy
Here is a link for the SDR surgery my grandson had in June 2011 and PERCS surgery in Jan. 2012
Anyone who HAS or KNOWS a child/grnadchild/friend with Cerebral Palsy
PLEASE do some research on this Life Changing Surgery.
If you've made it this far in my post, you are truly a loyal follower. I got on my soapbox as I wrote so please forgive me. But, I needed to vent just a wee bit. I'm a very grateful, positive, and blessed person. I don't like being negative but every once in awhile I have to get something off my chest. Thanks for listening.
Tomorrow or Wed. I will be writing about a new quilt I want to make for James. I made him one when he was a baby but he needs a new one. He loves robots so I'm thinking a robot themed quilt. I would really like for all of my faithful followers to help by possibly making 6" signature blocks to be placed in the quilt as my corner blocks and/or borders/sashing. I haven't designed the quilt as of yet but wouldn't it be special for him to have a quilt to commemorate his successful surgery with signatures of all the people who prayed for him, thought about him, loved him, or even encouraged me or his parents. I'll tell you more in my next post. I'll see if I get enough interest before I proceed with the design. Give me some feedback PLEASE!
Blessings
