Wednesday, May 28, 2008

Hi everyone!

Jade sunning

T and Jade being silly!

We have walls!!!!

As you can see by the photos, we finally received our waiver to begin building again! We started around mid-May and things are beginning to pick up. Now I finally get to start choosing things like my cabinets, the pool design, paint colors, etc. It's a little overwhelming, but fun. Each week is new and different with the structure and it's pretty amazing how things are done. I am most excited about moving in and having more handicap accessibility. She has grown so much and because of her constant movements, it's getting unsafe for some of us to hold her, bathe her, lift her and such. Jade's more than half my height. I picked up E the other day, who at almost 10, weighs a little over 65 pounds. There's no way I can do that with Jade at that age, especially being the wiggle worm she is! I think I really need to start some serious weight training. You would think that would be enough motivation to start exercising...:)

Jade has done fairly well over the past month. Her seizures are cycling again, but with no real severity these days (knock on wood). She seems to have been having more in the past week or so. Her tummy has been acting up again and I don't know if it's diet related, her seizure pattern, or a g-tube issue. No fever, no ear infection (I bought a handy ear infection detector at the urging of her pediatrician and it's great!), no other obvious issues. She's just been gagging a LOT, and I think she does it with every seizure. Sometimes she does this with tube blockage (i.e. excess stomach mucous - yeah, I know, ICK!), and it's enough to make her uncomfortable.

Next week, we go to Shands for her yearly VEEG. It's a 24-hour deal, with lab work to check her med levels and metabolic panel. I've been entertaining the thought (again) of taking her off of the diet with the only reason being her stomach issues. I will more than likely not do it, because I am pretty certain this is why her seizure activity has settled down over the past few months. I can't quite justify picking tummy troubles over seizure "control". What a terrible decision to have to make. I have my share of tummy issues, and I'm pretty sure dealing with those is far better than being bombarded with seizures.

Our disappointing news recently has been the resignation of her current physical therapist. Jade has worked with her pt for almost two years now and she's been, by far, the best we've dealt with. She's sweet, compassionate, kind, caring, and gentle with Jade. She's leaving to work for another new pediatric pt company in the area. I've been working to see if we can transfer Jade over to this company so we can stay with her physical therapist, but once again, insurance is dragging their feet. The best part of the new pt company is that they travel to us instead of us having our day disrupted commuting to her current center. At the very least, Jade will be doing Aquatherapy with D over the summer, so it's not like she won't ever see her again!

We still don't have her new wheelchair. We at least received a letter from the insurance company indicating what they will and won't pay for. Now, we're trying to see if CMS will pick up what insurance won't. I'm tired of waiting for this damn thing!

The kids last week of school is next week. Time to break out the activity book (and check book!)! I hope the summer goes smoothly and they refrain from picking at each other all of the time (yeah, right).

That's our news for now. I may try to post after we get back from her VEEG. I hope she's not having more seizures than we are actually witnessing. That would be one big BUMMER.

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.

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