Friday, August 29, 2008

School is in session!!!

Time to party!! :) The kids are now officially in school and Momma can relish a little bit of peace and quiet and work on a long to-do list. It was a nice week for the most part, yet still pretty hectic.

The dog is healing, finally. Her urinary culture came back negative, which means the antibiotics are working. Now, if we could get it through her thick head that peeing is an outside activity, then we're on the right track. I have hired yet another trainer to come to the house tonight to help with her increasing biting habit (she's teething) and to teach the dog how to let us know when she has to go out. Keep your fingers and toes crossed...!

Jade has had a rough week. Her seizures are a lot more forceful and greater in number for some reason. She bit the inside of her mouth yesterday during one which created a nice bloody show. Injuring herself during these blasted things always makes me nervous. I can't do much about the inside of her mouth, unfortunately, so I hope the cut isn't too painful. I really can't stand these vicious seizure cycles and the guessing game that goes along with them. I will pull excuses out of the air just to have a reason for the increase. Let's see. This week, I'll blame it on the heat! How's that? Actually, August is awful in Florida and I wouldn't be one bit surprised that it has some sort of effect on Jade. Not to mention, another potential hurricane headed our way!

I hope everyone has an enjoyable Labor Day holiday and the weather remains calm. :)

Thursday, August 21, 2008

Okay, Fay! Get a move on and MOVE!

My joy at the kids going back to school was short lived :( They managed to get there on Monday, only to have the next three days off due to Tropical Storm Fay. This darn storm has been sitting off our coast since the beginning of the week, churning up the waters around the restaurant (quite nerve-wracking considering what we went through in 2004). They won't put the kids back in school because of the possibility of high winds (40+ mph winds prevent buses from running), and we're kind of sitting ducks at this point waiting for it to move on. It's pretty insane provoking!

As for Stryker, she is on a 3 week regiment of antibiotics for a UTI. I took her for a second opinion after the oddball holistic doctor's diagnosis of "a chemical overload" (duh) with accompanying natural supplements instead of actual medicine. Her new vet is great and they are taking good care of her. After one week of antibiotics, she seemed to be getting a little better, but we erred on the side of caution and took her in Tuesday for another check. The vet did an ultrasound of her bladder and kidney (results normal) and a clean urine catch. They are growing the culture and I expect to hear from them today or tomorrow with those results. I am keeping my fingers crossed it is treatable and not an incontinence issue. She's still peeing in her sleep (a lot, not a little) and we are also hoping it is a behavioral issue as well. An incontinent dog is the last thing I need in my life!

Jade is doing fairly well. I am blaming any increased seizure activity on the low barometric pressure from the storm. We're averaging around 1-3 seizure clusters per day. They are pretty strong and have a lot of tonic components that are a bit new within the last few weeks. She is scheduled to see her neurologist on September 11. I am hoping he doesn't want to increase her diet ratio. It is something I won't do to her little body.

So, today we sit and wait again for the storm to pass. The business was closed yesterday in anticipation of it hitting us, but open today. Keep your fingers crossed for Florida!

Monday, August 11, 2008

Whoa doggy!

Stryker, Stryker, Stryker. What can I say? She's more work than Jade right now! She has had a urinary infection since the day we got her, and she continues to pee EVERYWHERE in the house, even after antibiotic treatment and holistic treatment. I am soooo ready to call the breeder and ream her out, but I am being patient and hopeful that this will run it's course. I will give it a couple more weeks and if she needs to go back to the breeder, so be it. I can't have an incontinent dog for the next 10-15 years. My "luck" never seems to end! On a different note, she is a pretty intelligent pup. We have a trainer coming out this week to work on everything (but house training, of course), and I hope we get the results we are looking for. Stryker seems to think that our toes are her next meal, so that is issue #1 we will be addressing :)

As for Jade, I won't type what I want to type, because for those of you who understand "jinxing" things, you know what I mean. Suffice it to say, she is more comfortable being back home and back in her routine. 

We increased her calories and protein on the diet, so we will see if that brings any more positive changes. I'm keeping my fingers crossed for her. Maybe once the summertime heat relaxes some, she will be even more comfortable. Speaking of the little sugar-butt, it's 7:30 am and she's awake and ready to face the day!

Our house is coming along nicely, even with all of the heavy rain storms. They got all but two or three of the windows in on Friday and one sliding glass door. It's really shaping up and the wait is even more excruciating! We won't be moving in until after the New Year, so here's hoping the rest of this year goes fast!

The kids go back to school next Monday. Yay!! While I will miss their company during the day, it will be nice once again to have a little peace and quiet around here. It will hopefully give me more time to clean out the house and rid it of things we won't need to take with us and it will also give me time to plan for paint colors and decor upon moving in. 

I hope this posting finds everyone well. 

Friday, August 1, 2008

Just a few pictures of what's going on around here

Jade's new life jacket

On the first leg of our vacation. How very cute!

Front of house - 8/1/08

Back of house - 8/1/08

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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