Favorite Scripture

FOR I KNOW THE PLANS I HAVE FOR YOU, DECLARES THE LORD...PLANS TO PROSPER YOU AND NOT TO HARM YOU...PLANS TO GIVE YOU A HOPE AND A FUTURE.
JEREMIAH 29:11 (NIV)

Monday, January 16, 2012

James Update

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

20 comments:

  1. Everytime I read about James, I just wish I was close enogh to give him a huge hug, but I know you are doing that so I will keeep the prayers coming. Thank you for sharing and maybe your post will help another family.

    ReplyDelete
  2. So glad to hear that James is continuing to do well!

    ReplyDelete
  3. Good to read good news again. :o)
    We can't wait to see what you're planning! :o)

    ReplyDelete
  4. You GO, James! Don't let wimpy doctors and PTs keep you from doing whatever your heart dreams of...

    ReplyDelete
  5. I think that smile says it all! It looks like he has the heart of a fighter! I will continue to pray for your & your family, and especially your special little man!

    ReplyDelete
  6. I'll take that kind of wimpy white boy any old day! Way to go James, Bravo to his mom for being the fighter she is. Momma Bear if ever there was one. Love to make a block too!

    ReplyDelete
  7. I would love to make a block. I am so glad he came through his surgery so well. I am sorry there are problems with the medical profession. Unfortunately you must be your own advocate or the advocate of those you love. Continued prayers.

    ReplyDelete
  8. Sheer joy! I am so very happy that everything is turning out so well. Good thing your daughter inherited your moxie. I would love to be involved in a quilt project for James. Does the RMH that they stay in while having PT need quilts for other patients and/or families? I bet your followers would be all over that, too. Thank you so much for the update.

    ReplyDelete
  9. I hope that your daughter will send a picture of James to the #%#! doctor and the medical board to prove that James is not a wimpy kid. No one who is a wimp could do what he is doing today. Beckie

    ReplyDelete
  10. Thanks for letting us know of James' progress! He is doing very well....too bad the local PT folks can't just cooperate. *sigh* I'd make a signature block, too. We could all put our location on the blocks so James would know how far and wide the prayers were being said for him!

    ReplyDelete
  11. Good to hear! I believe your stories, but I cringe at the thought. I had similar medical attention (or mis-attention) 30 years ago. I would like to think the medical field has progressed some over the years. Bravo for his progress. I would be more than willing to send a block! Just keep us posted.

    ReplyDelete
  12. Please let me know when you need what kind of block! I would love to send one for him! This surgery sounds very similar to what they are talking about doing for my Lillian in Peoria. The Dr. said 'Most dr's would do it X way, but new cutting edge found it is better to do Y' You know! They were waiting for growth plates to be at a better place for her. (she is 11 and a hemi-palegic) I also have to say Ronald McDonald houses RULE!! They are a true blessing fro parents and families who need them!!

    ReplyDelete
  13. I'd be happy to make a block...just let me know what block and when you need it. blessings, marlene

    ReplyDelete
  14. Yes, i would make a block for little James' quilt. What a trooper! And will continue prayers, as well. Thank you for the update...

    ReplyDelete
  15. James is a real trooper! What could be more fun than to make him a block?
    Thanks for the picture and up-date.

    ReplyDelete
  16. Yay! Love that smile....momma and grandmomma are so right to research, think, and fight...personally there are not many doctors that I trust -- so glad you found some good ones! Will be waiting to hear about the blocks!

    ReplyDelete
  17. Oh my gosh, Jane -- what local doctor was it that said that to ME?? Please tell me so I can make sure NONE of my grandbabies ever get close to that person! I'm so glad to see James's progress!! YAY!! And of course, I'd be honored to contribute a block! :)

    ReplyDelete
  18. You go James! I'm so happy to hear of his great progress. And Jane, it is OK to vent especially when you and your family are ill treated. Looking forward to helping with James quilt. :D

    ReplyDelete
  19. I've been away from blogging awhile so haven't visited and therefore didn't know about James' surgery. Way to go, Big Boy! Aren't we proud of you??? What blessings have occurred in this child's life. Sure glad I wasn't around when that doctor called him a "wimpy little white boy"...I may have shown my ugly side. Thankfully the Lord blessed James with a mama with a fighting instinct. Can't wait to see the new quilt. Please give this cute little guy a hug from all us bloggers!

    ReplyDelete
  20. A doctor actually said those words????!! I'm in utter disbelief and I ask the same..."what episode of what fake medical show did he get that from!" How unprofessional. I'm so glad James is making progress after all that he has been through. I would love to contribute a block or two. :)

    Jen

    ReplyDelete

Blessings to all of you who have taken the time to leave your thoughtful comments. I read each one and hope you will come back often!

Related Posts Plugin for WordPress, Blogger...