Wednesday, December 31, 2008


Cheers to a new year with many hopes of research success and breakthroughs, less seizure activity, no hospital stays, and a smooth move-in to our new home!

Wishing all of you the very best in 2009!

Tuesday, December 23, 2008

Everyone who hates incompetence, raise your hand!

Who can you strangle when everyone is pointing the finger at everyone else?! I have been in a battle with Jade's enteral supply company (Apria, for those of you who know how idiotic they are) since yesterday. I merely called to find out when she was getting her next supply of food (note: she's already 10 days late). I find out that some kind of authorization was needed to be signed by her doc for her food and supplies. Fine. I call her doc's office and they faxed this authorization on December 10th! Of course, Apria has no record of this and now they are telling me that this time frame for authorization has expired, whatever THAT means! I call the doc's office again, and this time the nurse calls Apria and gives them holy hell for not sending a child's food supply (you go girl!) and tells them it was faxed. Doesn't seem to matter, because when I called again today, they told me they are still waiting on the doctor's authorization. AARRRGGHHH!!! I cannot stand these people. Now, I am waiting on the nurse to call me back (she's gonna pull her hair out too). After Apria finally gets the fax they should have already had in hand, apparently the insurance company must approve it first before they can send her food. Thank god I have stockpiled her supplies because we would be in deep doo-doo by now if I hadn't. Bunch of backwoods dumba--es!

On top of all of this crap, Jade's running a fever. First temp today was 101.4. So much for her starting to feel better after the bout with the stomach flu. Now I know why she was seizing ALL DAY yesterday. Big, bad, ugly seizures. I have no idea what's going on, but I hope she kicks it in the butt soon. Speaking of seizures...gotta go :(

Saturday, December 20, 2008

And four 10 second tonic/clonics later...

I guess she's trying to catch up from the past couple of days :(

Friday, December 19, 2008

Icky, yucky, tummy :(

Well, it's that time of the year again for illnesses! I finally know why J's seizures were so horrible this week - she has a stomach bug. What's terrible is that I knew she wasn't feeling well two days ago because she was feverish. Had I known that her stomach was upset, I would have taken it much easier on her with food and therapy. I guess her revenge is passing it on to me today! :( She's been sleeping since last night for the most part. Thank god for the g-tube, because I would not be able to get food or fluids into her otherwise. Bad thing is, she can't have Pedialyte or tummy meds because of the diet. Gotta ride this one out. At least she seems to have had only one seizure between today and yesterday so far. I'm keeping my fingers crossed because I lowered her Zonegran this week (before I knew she was sick). I am trying to see if lower doses of meds will "wake" her up and snap her out of the zone she's been in all year. I have a sneaky feeling that the Zonegran that we started last December is what is keeping her from moving the way she used to. She has no desire to roll over or do much of anything. We may find out if I can wean her off of it, or way down. Let's pray her seizures don't get worse as we drop the meds. Say some extra prayers for her that this doesn't happen.

I FINALLY finished wrapping Christmas presents. I thought I would never get done. I hope I'm not forgetting anyone or anything...! Now, I'm just waiting for the holiday to pass so that I can start packing up the house. Things are moving at breakneck speed now. The drywall will be done today. The pool deck was poured, acrylic was applied, and they painted the deck already! The outside of the house is completely painted. Soffit will be in place soon and the flooring will begin being installed in the next week or so. Now, the pressure is on for me to choose lighting, plumbing, paint colors, carpet colors, and landscaping. Yippee! I can finally see the light at the end of the tunnel with this project. I don't have a current photo, but I will try to download one soon.

I have a feeling I won't be posting again until after Christmas. I hope this post finds everyone healthy and happy. May your Christmas be very Merry and all that you hope for!

Sunday, December 14, 2008

My own personal chef!

Jade and I made banana bread today! I really think she enjoyed helping me. She poured the dry ingredients into the bowl and helped mash the bananas. I think the mushy feeling of the bananas was really unique to her. She also held the measuring cups and the spoons and stirred the ingredients with a whisk! I think it might have all been a bit much for her, but she actually opened her eyes for the photo below!! It's great to see her do this kind of thing and "look" interested in something. :)

     Those are chocolate chips, by the way! :)

Monday, December 8, 2008

A budding artist

Hello all! I think I get about two minutes to update until the kids are back from their bike ride... :)

The weeks have been a whirlwind with the holidays and shopping and social studies projects and decorating's BUSY!! But, in a good way :0) The dog is still crazy but loveable, Jade is still having seizures but not as many (just longer and more intense), the kids are excited about Santa, and I am almost done my Christmas shopping! Now, if it would only snow. Ha ha! It's still in the low 70's here, so I don't think THAT'S going to happen :)

Jade now has a homebound teacher coming to the house three days a week. She is such a nice woman and so bright and bubbly with J. I wish I had done this sooner! So far, she has had Jade paint and she brought Jade some simple communication devices. Now Jade can turn on the Christmas tree lights and turn on her music when she wants to! I am eager to stimulate J as much as possible. She seems so bored all of the time that this is exactly what she needs. Tomorrow, her pt is bringing her son to therapy and he will be playing music (I think a guitar?) while she receives pt. This is going to be such fun for Jade! We're all looking forward to see how she does. Hopefully it won't be like today when I had to "wake" her to feed her and to see her teacher. She pretty much slept through her whole class and they were painting!! I got some cute pics though :)


I hope everyone who reads this is enjoying the holiday season. Christmas can't come soon enough in this house!

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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