Well, now.. lets see if we can catch you up on the last year.
In July of 1999, Valkyrie was admitted to Tampa Childrens Hospital for testing by the pulmonologist. He got her in there and decided to have every other doctor in the world test her too... poor kid. What was supposed to be 3 days of testing turned into 2 weeks worth.. and she ended up spending her 7th birthday in the hospital hooked up to all kinds of stuff.
The pulmonologist (man thats a long title) performed a pulmonoscopy... basically he stuck a camera down her throat into her lungs to take pictures and see how much scar tissue was there. He found some profound scarring from all the pneumonias and upper respiratory infections, and basically told me that her chances of outgrowing this asthma is slim and none. He gave her the one thing that I ahve been fighting for for years... a portable oxygen tank. Well, she's got more than that now. She has a compressor which grabs the oxygen from the air and concentrates it. The machine makes a TON of noise, but really saves on the oxygen tanks. We have two different types of 02 tanks, we have the tall cylinders and some of the smaller ones which are great for going to the store or going to disney.
Then, the pediatric gastroenterologist (now there's another mouthful) did an endoscopy... this was basically the same procedure except the camera went into her stomach rather than her lungs. He discovered that Valkyrie suffers from a severe case of GastroEsophogealReflux Disease also known as GERD. This has made the bottom part of her esophogus very weak, and could be a major reason why she can't gain weight and why she aspirates (inhales) her food and drinks. He put her on liquid zantac, which seems to be helping.
We were then visited by her neurologist. Dr. Fordada really seemed to fall in love with Valkyrie. He asked all kinds of questions, and then determined that we should do one of those extended tests where they measure the brain wave activity in her brain for 72 hours. So, they came in and hooked her up to all these wires with this stuff that smelled like airplane glue (which set off an asthma attack). She looked like rainbow bright with all those long multicolored wires coming out of her head. It was attached to this little box that she carried around in one of those fanny packs. Poor kid could barely lift it it was so heavy. They did a sleep deprivation test to see if they could trigger a seizure... sheesh people.. she's never had one so why would they want to make her have one? ah well, thats doctors for ya. They did find that she has an increased amount of brain wave activity, on the left moreso than the right. Now what this means is that her brain is constantly working overtime... and that it isn't letting alot of the necessary things in like learning. The left side of your brain controls learning, speech and so on, which explains why she is speech and language delayed, fine and gross motor delayed and so on. He also said that she is more than likely ADD/ADHD as well as probably having almost every learning disability known to human kind. Ah well.. like we didn't know that already too.
The genetisist was next, taking a very long family history and asking more questions than I knew there were answers to. Well, he basically said that he didn't see any evidence of any genetic disorders such as autism or down syndrome. But other than that he didn't offer any more information.
After all of this, and more blood tests than the kid had blood, we found out a few things for sure. Valkyrie has learning disabilities, she doesn't have Cystic Fibrosis, and she has constant heartburn. Hmmmm... all those tests to tell me what I already knew.
Well, now she is doing ok, she uses her oxygen about 2-3 times a week depending on what we are doing and the weather. It seems like things like Hurricanes really mess her up. We've been to the emergency room a few times for attacks and low oxygen saturations, and are still trying desperatly to find a pulse oximeter (insurance won't pay for them) so that I can monitor her better.
She is currently in a program called Hospital Homebound. This is for chronically ill kids who would miss alot of school. The program allows a teacher to come to the house 4 times a week, and teach her here rather than in school. Oh, yeah.... the other things that the doctors found out is that her immune system stinks. She is extremely vulnerable to every bug, germ and virus that walks through the door, which makes going to school with other kids a bad idea. She has enough trouble dealing with what her brother and sister bring home without being in a room with 20 other kids with a ton of germs. She is reading fairly well, can count to 100 by 1's 2's 3's and 10's, and can count backwards from 30 without stopping. She is having some trouble grasping addition and subtraction, but thats kinda what happens with all those learning disabilities. She's in first grade this year, and in some ways is ahead of what they are doing in class, which is wonderful! She can sight read more words now than she could last year, but being at a developmental age of about 5 when she is 8 is causing some technical dificulties. But her teacher is wonderful with her and she just loves him to bits and pieces.
Well, thats about the whole year in a nutshell. She is still struggling, but is holding her own and is still a complete joy to everyone who meets her. The Emergency room doctos just love her... and they laugh when she begs them in her tiny voice "Please don't give me any IV's... I don't like dem at all at all!" and so far they've been able to oblige. The last time we were there, we did have to convince her that she had to let them give her a shot of epinephrine in order to help her breathe better, and after giving her the choice of the shot, or 3 days in the hospital and an IV, she agreed to take the shot. And didn't cry one little bit! It seems we've found another miracle drug in the epi... it helped incredibly when nothing else was working.
Now, hopefully, it won't be so long in between updates. I shall most definatly try to keep this up more often than I have. I promise. If you want to mail us, our e-mail is down at the bottom down there somewhere...
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The first Update page on Valkyrie
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