I worked most of last night cleaning up after an emergency that happened at work yesterday. Shortly after I woke up this morning Casey came in and felt crampy and nauseous. Shortly thereafter she began vomiting, shaking, having hot and cold flashes, felt weak and started getting very sleepy. This all happened over the course of 30 minutes. Naturally, we called the doctor. She ended up in an ambulance on her way to Denton Regional and I loaded up the girls and followed. Fortunately it wasn't as severe as it first seemed. They couldn't find much wrong. I would call it "inconclusive". They did say that she had air in her intestine and that it's likely to cause nausea, but it doesn't explain the other symptoms she had, at least not in my book. She's ok now, very sleepy from the anti-nausea meds. We're all at home and I'm taking care of the girls while she sleeps.
They say that the air could have ended up there due to an illness that Casey is getting over, or it could be due to something minor that they can't find any trace of.
Well, our Maddy had her 6 month check up today and she did great! She now weighs 13 pounds 4 ounces (25%) and is 24.5 inches long(50%). She is still developmentally behind but socially she is ahead of where she should be. Since she can't see very well she uses her other senses to make up for it. For example most 6 month olds get afraid when they see a stranger but Madison only reacts when they talk. She coos more than a "normal" 6 month old does because that is how she interacts and plays with us!
She is still having problems taking rice cereal so when she goes for her barium swallow( this Wednesday) we will also talk to a speech therapist. The speech therapist will be able to tell if there is something preventing her from learning how to swallow rice cereal. She isn't too far behind in the eating area but we need to start doing something about it now.
She also has a sinus infection so is on her first antibiotic, hopefully it clears up soon. She also has to continue her breathing treatments for a couple more months at least. She got 4 shots and handled them very well. Overall she is doing well and our happy little girl! She goes for her barium swallow on Wednesday and then on Thursday she goes for genetic testing, a busy week for our Ms. Maddy.
Emma, oh my other sweet princess. I feel bad because so much on this site has been focused on Madison but Emma is still a huge part of our lives. She is such an amazing toddler and she amazes me everyday! Everyday her language grows and she behaves more and more like a little girl. It is hard to believe that she isn't a baby anymore and that in 3 months she will be 2. Her favorite activity right now is coloring, she does it almost all day long! She also is in love with Buzz Lightyear, every day she asks to watch buzz, she will say buzz buzz please. She has such an amazing personality and I can't believe that I have these two girls. I know all I talk about is them and that I always say how amazed I am. But I am, I still feel like I am living a dream. The girls and Chris are everything to me and I am so in love with them.
I am the luckiest person in the world.
On Wednesday night Casey and I just couldn't resist -- we set up our Christmas tree and put out the Christmas decorations. Sure, it wasn't even Thanksgiving yet, but we were in that Christmas kinda mood.
Anyone have new pictures of the girls to post? Oh wait, that's supposed to be me. Well, we'll see.
While we were out today in the frenzy that is Black Friday we listened to Christmas music (of course). Ave Maria came on and I was kinda humming along when suddenly we heard Emma singing from the back seat. :-) Hey, it's one of my favorites too!
Post.... post something... anything... *think* *think* *think*...
Aw, crap.
Wow, our little Madison is just doing all sorts of amazing things this week! Tonight for the first time she looked at me and smiled! I didn't even say anything to her, I just looked at her and smiled. I can't believe it, I am so thrilled and happy for her. I know most babies do this earlier but who cares, my baby smiled at me!
I am the proudest mommy there is!!!!
We've got our first annual "user conference" coming up at work, and we wanted to do something big to make waves. Unfortunately we're swamped at work as usual, but the idea was presented to many of us to work a few weekends in exchange for a nice bonus. I worked last weekend and was going to work this weekend, but Madison had a fussy morning (she seems better now) and Casey still has her migraine, so I decided today is a good day for some family time. Besides, I think 13 days of work in a row is plenty. There's tomorrow and next weekend though... hey, and after that we have a 4 day weekend for Thanksgiving! Yeah!
Last night I got a headache and it was the worst I have ever had. It still hasn't gone away but it got so bad at one point Chris almost took me to the ER. It really hurts and I just wish it would go away. ARGHHHHHHH headache
Well, we had trouble finding a good reference for a pediatric opthamologist that's an expert on albinism, so I got the idea to call the opthamologist that we saw originally (Dr. Davis) to ask for a reference. I ended up with him on the phone and we talked for a while about Madison and the situation. He didn't have any recommendations on anyone more knowledgeable, and after I got done Casey and I concluded that we got a little distracted by his use of some older terms and lost sight of the fact that he did seem rather good. He assured me that although the diagnosis was "probable" incomplete albinism he was as sure as he could be that it was the case. It wasn't due to a lack of experience with albinism that caused the "probable" part, it's just that it's too early to be able to tell for certain by just looking at her eyes. As far as the "incomplete" (ocular) albinism diagnosis, he noticed that she had a little pigment in her skin, hair and the transillumination in her iris wasn't as dramatic as he's seen in complete albinism. It makes sense to me on a level -- basically he has to take a guess at this point as to whether she just has ocular albinism or if it's complete albinism. My guess is the opposite of his, but I respect his professional opinion.
We've decided that we're satisfied with Dr. Davis' diagnosis and his abilities and we'll wait for the follow-up we have with him in January.
Well, today was a very emotional day and I will let Chris explain what the neurologist said about Madison. We don't know anything more than we did yesterday but now there are more possibilities and he knew very little, if anything about albinism, which is ok because that isn't his area. I will let Chris go into details about everything.
The day had a wonderful ending though. After Madison's breathing treatment I held her for a while and kept making noises and kissing her on her cheeks. Well, she kissed me back a few times and even made noises. The best part of all is we were really close and I swear she looked me in the eyes and smiled. I of course got all excited because my precious baby girl has never done this before. I scared poor Madison because I was so thrilled about my princess looking at me!
Ohh Miss Emma has done a lot of new things recently! She is starting to talk in sentences, like today Madison was crying so she told me "go get her". She can actually answer yes or no now, say some of her ABC's with a lot of help, take her own shirt off, participate in Jungle Gym pretty much by herself, sing with matching rhythm, and so much more. She is really becoming a little girl.
I am so lucky to have such wonderful girls!
Lesson #1 for today: Regardless of how nice you're trying to be by refilling the break room fridge with cokes because other people forget to replace them, if you drop one it will still explode and soak your pants, shoe, the chairs and at least half of a wall.
Lesson #2 for today: Commercial grade "powerized" Windex with vinegar is really good at getting soda off of shoes, chairs and walls. It's probably not so good for pants.
