Friday, November 28, 2008

What I am thankful for...

I suppose another update is long overdue :) First off, let's just say the dog is sucking the life out of me! He's a good pup, just very active and demanding of attention. We just got him neutered and microchipped this week and you would never know he underwent any sort of procedure. Obviously, he's recovering well :0)

E's pageant is over as of last Sunday. She did so well! I was a nervous wreck worrying about her being up on stage and about what the final outcome would bring. However, as she always does, she made us all proud by speaking clearly and intelligently and walking the walk that would have had me flat on my face onstage! She looked so beautiful up there and we are all so very proud of her. She also made it to the Semi-finals!! Next year (probably Summer), she will be taking part in the next level in Orlando. Now she's chomping at the bit to start doing the pageant circuit. Could my life be any more eventful?! ;)


Our Thanksgiving was very nice and pretty low-key (just the way I like it these days). I don't know who was more stuffed, the turkey or me! Suffice it to say that I was very thankful for everything I could possibly be thankful for.

As for Jade, she's still pretty much the same. I dropped her Klonopin a couple of weeks ago, and I don't think it affected her too much. After this and her Zonegran increase, I decided to take it upon myself and begin a small wean of her Keppra. One week now with a quarter tab drop and today I dropped another quarter tab in the morning. She had a pretty rough day yesterday starting in the afternoon and she continued to seize repeatedly until around 9:30pm. Some were rough, others not really minor, but smaller nonetheless. I hope today is a better day for her.

The main reason I decided to drop her Keppra is because of what her recent increase did to her (doped her up, made her more sleepy, and increased her seizure activity). She's been on it for at least two years now, so I am wondering what taking her off of it will do. It's hard for me to ascertain whether this decrease is contributing to her current seizure activity, or if it is from her increase in Zonegran. Only time will tell once again.

I have to admit, her level of seizure activity is enough to put me over the edge these days. I honestly can't stomach not being able to "control" this part of her and it's doing a number on me. Especially with the holidays right in front of me. It is so not fair that she can't celebrate like any other four year old would like to celebrate. Instead of me buying toys that kids her age would enjoy, I am exploring therapy mats, therapeutic swings, lift systems, cause and effect toys, adaptive switches, orthotics, standers....You get the picture. For those of you who are not affected by special needs children, be thankful this is not part of your lives. For me, I am thankful she makes it to another day, and does not land in the hospital or worse.

Ugh! That last paragraph is crap and it will be one of the last times you read anything so negative. I am generally an optimistic person, but when it comes to her, there are times I need to vent. My lifeline of support are my friends who are going through the same problems. Without them, I would be directionless and chronically depressed. Without the support of my family and those involved in her day to day care, I don't think I would hold up at all! Thanks to all of you for getting me through the tougher times. Most of all, thanks Jade for letting me draw strength from you each and every day. You have made me a much better person for loving you the way you are. You will always be my special little princess!

Monday, November 17, 2008

Weekly update

There's not much to write. Jade seems to be doing a little bit better over the last couple of days, but I'm not holding my breath (ok, yeah. maybe I am). She had a doozy of a seizure last night around dinner. I thought it would knock her flat on her butt, but she stayed awake for a while after. The good part was that it seemed this was her only seizure all day. I was gone all day shopping with E, so I will pretend this statement is true :)

Speaking of E, she entered a pageant and was accepted to take part. The next step happens this weekend. She has an interview and photo shoot on Saturday, and Sunday is the big production. She's so pretty and smart, she's gotta be a shoe-in! I posted a photo of her in her formal attire!

Tuesday, November 11, 2008

Keeping my fingers crossed

While I haven't seen much improvement with the increase in Zonegran, there is potential I believe. She had a "better" day yesterday with fewer tonics and a longer gap in between seizures. However, the seizures she had were HUGE. 

I may be jumping the gun, but I decided to take away her morning dose of Klonopin. It was such a small amount, I really can't see that it is doing any more than sedating her through the day. Hopefully, the absence of it won't affect her too severely. My thinking is that the increased Zonegran will temper the Klonopin disappearance. I was halving the Zonegran between the a.m. and p.m. medication doses, but today I am giving it all with her first meal. This should give me an idea of whether she is sedated with the higher dose. I hope she won't be sleepy.

I haven't posted about the house too much I realized. We are coming up on the fun parts! Well, for me anyway :) I am in the process of picking out the flooring, fixtures, appliances, paint, etc. and it's a bit overwhelming! However, it's coming along nicely. Once I get another good shot of the front, I will post it. The closer move-in time gets, the more impatient I get with waiting!

Tebow is doing well. He is a much better family dog than Stryker was. He still nips and gets me up at the crack of dawn, but it's far better than the zillion daytime and nightly bathroom trips Stryker required. I heard they cropped her ears! A pretty look, but not a nice thing to do to her :(

Friday, November 7, 2008

What more can I do?

So, over the weekend, I came to the agonizing decision to put Jade on Felbatol. For those of you familiar with it, I am sure you know how difficult it is to come to such a decision. For those of you who are not familiar with it, it has severe and sometimes fatal side effects. Patients/parents are even required to sign a waiver to have it prescribed. You must now realize what we've been up against. We have seen so many seizures over the past few weeks and months, that it was time to do something, anything. Thus, Felbatol.

Of course, I call first thing on Monday morning and explain my decision to nurse number one. I tell her that I want to place Jade on the Felbatol, but decrease and/or wean the other three drugs she is currently taking. Nurse says okay, let me talk to the doctor and I will get back with you. In the meantime, plan on coming up here on Thursday a.m. to sign the waiver. Great, okay.

I hear nothing on Tuesday and figure things are as we spoke about on Monday. But, you never know.

So Wednesday rolls around. I at least want to confirm this tentative appointment since our drive is two hours each way. The end of the work day comes around, so I call the after hours service and ask to speak to the neurologist on call. I was intent on having Jade admitted because she had yet another round of harsh seizure activity and, you guessed it, something needed to be done.

I get on the line with nurse number two. She tells me, sorry, but doc absolutely will not prescribe Felbatol because of its side effects. ??!! I was floored. This, after our October visit where we discussed at length the pros and cons of the drug with another neuro in the practice, and where I was led to believe we shouldn't have a problem getting it for her? Confusing to say the least. She tells me that if it is something we feel strongly about, then we should come speak to the neuro and find out why.

I know he is a conservative doc, and a very intelligent man, but wow, I was thrown for a loop! After a pretty lengthy discussion between us adults, we decided that there was no point in driving all the way up there to hear the same thing we heard the night before.

So, now we are left with increasing her Zonegran. Zip, zero, zilch. The fat lady has sung. Finis, finito, done. We are out of options. All I can say is, wish her luck with the Zonegran. So far, she is lacking the lucky charm :(

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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