Westley has been diagnosed with Duchenne Muscular Dystrophy.

Record Speed

Today Westley and I returned the Children’s Hospital for a clinic visit after a 6 month break. What normally takes 3 plus hours only took about 2. This Mama was very happy to see the slew of docs, nurses etc rolling in and out of the room at such a rapid rate. We saw the regulars and were pleasantly surprised to see they added a Respiratory Therapist to the crew. Westley is always so happy at clinic visits so its not all that bad. (My guess is; it has something to do with being spoiled with a Wendy’s lunch, missing school and being the center of attention.) 🙂

Highlights

I have never seen a child or grown up for that matter take a flu shot like Westley does. The nurses and docs try to use “kid gloves” when speaking about the shot and he just looks and them and says “Its just a flu shot people. It doesn’t hurt.” When the time came he didn’t whimper, flinch or even tighten up on my hand. A TRUE WARRIOR!

Westley will need a round of blood work and urinalyses to see how he has “progressed” over the year. That will take place early next week.

We will meet with a physical therapist and a durable medical equipment company soon to get Westley a manual/push wheelchair to be used during school hours for things like fire drills and extended walking activities. We aren’t ready to go to the scooter full time just yet so this will be a good fall back item during school.

And the BIG one

Westley will need to undergo something called “Serial Casting”. This is a series of casts designed to gradually stretch the muscles in his left leg to provide better, extended mobility overtime. So far the right leg isn’t an issue. The casting will be done in 7-10 day stints over 1 to 4 weeks. The cast will be removed each week to note progress and if more stretching is needed the cast will be replaced.

Once we schedule the casting I will let you all know and post pictures of the event. Westley seems to understand what this process entails and is happy to get to pick the color of his cast (red or camo I’m guessing). I hope that he will be just as understanding when that cast is annoying him at 2 am.  We decided to be proactive and do this now as opposed to when the issue is critical. That would definitely cut into our MDA Camp and summer pool time in 2012. 🙂

Over all it was a great visit and Westley earned ice-cream sundaes for he and Wyatt for being such a trooper today. I guess I will owe him a vat of ice-cream after the casting process is over.

Thank you all for your continued thoughts and prayers. The level of strength our foursome has proves to us there are so many prayers being sent our way.

God Speed,

Jessica

 

 

 

2 Responses

  1. Miss Christie

    Go Westley! What a trooper! Glad to hear the clinic went well and he has such a great attitude about everything. 🙂

    October 19, 2011 at 6:37 pm

  2. Mike Ford

    You guys are always in my prayers .God bless . Great job Westley ! 🙂

    October 27, 2011 at 10:56 am