Wednesday, February 27, 2008

Where did the SandMan go?

Yesterday, we went to see Jade's Pediatric Surgeon who put her g-tube in place. I was concerned that because she had such a huge growth spurt over the last 6 months, that maybe it was time for a new fitting. He deemed it perfect and off we went! Two hours in the car to and from for a 10 minute visit. It never ceases to amaze me :) I also questioned him about what to do about the amount of air in her belly, but venting her seems to be the only solution. She's getting enough nutrition to grow, so it is just something we have to alleviate for her.

I figured out why she's been having more seizure activity. She's got a horrific cold right now. I feel so bad for her because her poor little nose is all red and stuffy. We snuggled last night because I was afraid she would keep sneezing through the night and blow snot everywhere without anyone to clean her up! No sneezing and she slept a little better than I expected. Most of her awakenings were because of brief tonic seizures. So, we cuddled and kept each other company! I'm hoping she gets through this without it getting worse.

So, I think the Boogie Monster has scared the SandMan away for a while. What it would be like to have a full night's sleep again...

Sunday, February 24, 2008

Miss Bubbly Boo

As I said in my last post, things spiral downward after I tell someone she is doing well. She's not really bad, she's just been having more seizure activity. Lately, J's been doing a lot of tummy grumbling and burping. Not things that are comfortable for her, especially since the Nissen is supposed to curtail the air release. Every time we vent her g-tube, we get massive amounts of trapped air back out. I feel awful for her and can only blame it on the effects of the diet. Still, the trade-offs (less seizure activity, more head control/strength) are what keep her on it.

She bit her thumb again last night during a seizure. It's not as bad as last time, but STILL!!

They poured the foundation at the property this week. I think the slab might be next week or the week after, once inspections pass. I've been so eager to start really shopping for the interior, but we still have a ways to go. It's looking like we will be in around Thanksgiving. I'm keeping my fingers crossed!

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... :)

Monday, February 11, 2008

Layin' low

Fortunately, there's not much to report here, as you can tell by the lack of posts. She's been pretty stable over the last couple of weeks and I didn't want to jinx our good fortune by saying it out loud! She's been incredibly vocal the last few days. We can't figure out why. Is she uncomfortable, lonely, or just wanting to communicate??

We're moving along with the land clearing. Surveyors today and foundation tomorrow. We hope anyway! Above is a "view" of our future view.

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