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!

1 comment:

Brooklyn said...

We all have our negative moments! Do not ever apologize for that....I think holidays are hard -gift shopping is hard. I get so jealous of my friends who can grab any old toy off the shelf for their kids.....we will make it through it :)

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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