Tuesday, February 19, 2008

How much growing can a kid do??!!

It seems every week she's getting bigger! And the wheelchair people think she will last another year in her current chair. They don't know the power of Jade :) We measured her for a new chair in January. We're waiting on insurance right now to say yes or no. I'm just floored by the cost of a new chair. It's like buying a used car! I know some of those power chairs are upwards of $20k. She will never use one of those, but geez! Keep your fingers crossed they approve it. Because of the potential for her to get a new chair, we decided to go ahead and convert my van for wheelchair access. I hate the thought of the van being torn up and having less seating, but it is something that would have needed to be done eventually. They take it this week and we will be without it for FOUR weeks! It is sent to a factory in Michigan, thus the time frame. Crazy, huh?

So, she's been doing remarkably well over the last few weeks. I know, as soon as I write this, something will go dreadfully wrong :( She will actually go days without a seizure and it blows me away! I wonder how long our good fortune will last. We're definitely not making any changes to her meds/diet. I'm not going to fix what isn't broken. Her current issue is an excessive amount of air in her stomach. I don't know if it's from air swallowing since she chews on her thumb so much, or if the high fat ratio in her diet has really taken its toll on her belly. I just hope she is not constantly uncomfortable because of it. We vent the air out several times a day, so at least the g-tube gives her that level of comfort.

Our property is finally getting a workout. They completely cleared it, as you saw by the last posted photo. Last week, the surveyors marked off the outline and yesterday, they were to start digging for the foundation. So very exciting!!!!!!

My little pumpkin has decided to wake up. She's been sleeping in quite a bit these last few days. Thus the reason for my suspecting another growth spurt!

I miss all of you! Florida beckons those of you who are tired of fighting snow and ice (which is pretty much everyone who reads this!). We're waiting for you with lots of sunshine and warmth... :)


Katie said...

Hi :) So glad Jade is doing well! xoxo big girl!

Brooklyn said...

I am glad to hear Jade is doing so well, I am like you though, I almost hate to soeak (type) the words or we might just jinx our sweet girls. I pray for LOTS of good days to come!

Our peanut in a nutshell...

Hi everyone! Thanks for visiting my blog. My name is Jade and I am currently 8 years old. I have a big sister and a big brother whom I love very very much.

I have a very rare neurological disorder that isn't even named yet! It is a genetic mutation called CDKL5. It is considered a variant of Rett Syndrome and presently, I am only one of around 600 or so children in the world documented to have this mutation. Each child is unique in that his or her symptoms vary quite a bit. Unfortunately, I am one of those children who is affected much more severely than most of the kids.

Some of the problems I face include:

Reflux (in October 2006, I had surgery to have a Nissen Fundoplication done and to have a gastrostomy tube inserted for feedings). As of March 2012, I have a GJ tube for continuous feeds.

I am hypotonic - I have virtually no muscle tone and I find it difficult to even hold my head up on my own.

I have cortical vision impairment - my brain doesn't process the images it sees. Sometimes I see off to the side, sometimes, my vision is shuttered, sometimes I don't have any vision at all. The doctors and my Mom and Dad don't really know how or what I see because I can't tell them.

I cannot talk nor communicate with gestures.

I cannot walk, nor will I ever walk.

I grind my teeth. So much so, that some loosen during seizures.

I cannot grasp objects or use my hands for the simplest of tasks.

I cannot sit on my own. I can, however, sort of roll over from side to side.

I am choreoathetoid. I cannot control the jerky movements my arms and legs make.

I have life-threatening seizures every day. This is my greatest challenge.

So, now that you have gotten to know me, please feel free to take a stroll around my blog. Some of it you read may seem depressing, horrible, unfathomable, and downright crazy. But, this is my life.

Friends who follow this blog