Thursday, June 26, 2008

What a rollercoaster...


Okay so I jumped the gun a little. Maybe. I talked with the doctor this morning before leaving to take Anabelle swimming. We were discussing how Lila was making progess and doing so much better. She said she felt like we could attribute that to the medication and was going to put her on a higher dose of one of them and a more potent kind of the other to see if it would completely clear up the problem. But when I called a few hours later the nurse told me she had 8 or 9 episodes already and that they were more serious. Lila was very pale and they were taking blood to the lab for a CBC (complete blood count) to see if she had enough blood since she has had so much taken for so many tests. They were also wondering if she has an infection that would cause that reaction. But again the tests came back okay on both accounts. A few minutes ago when I was holding her she turned dark purple and started shaking and her eyes went glossy. It looked like a seizure. The nurse told me this can be what babies look like when they are choking and that it is very hard to distinguish between choking and seizures. The doctors are considering doing a 24 hour EEG on her since nothing showed up in the previous EEG but things don't seem to be adding up just right for it to be only reflux. What doesn't fit with the reflux is the staring, glossed over eyes. They are also thinking that once the higher doses of medication kick in, that could do the trick since she gained a good bit of weight this week and the previous dose may not be effecting her like it needs to. So the bottom line of all this rubbish is that we still don't know. Sigh.

In other news, we have pretty much the coolest kid on earth to take to the pool. Like previously mentioned, Anabelle puts on her floaty suit and swims laps all over the pool by herself. She dunks herself underwater and begs Braden to throw her high in the air without catching her. Her new trick is to climb the ladder to the top step then let herself fall backwards into the pool where she dunks underwater and comes up smiling. All this while I tan and eat her snacks. What a hoot she's turned out to be.

4 comments:

Jeanne said...

Julie, I am so sad to hear of Lila's setback. I wish they could figure out what is going on with her little body- that must be frustrating and heartbeaking. I cry everytime I read of her episodes and I wish I could be there with you. Love you.

Jeanne said...

Woops- that last comment was Mel. The computer must be logged on as my mom.

emilyy said...

Julie I just want to cry when I hear that. I was so happy to hear that she was doing better. I'm still praying for you and I'm so happy you have annabelle to lift your spirits right now. You are always so strong through what ever trial you face. I am always amazed by your strength and faith and of course your sense of humor during difficult times. And lets face it I think you have had your fair share. Anyways call me when you can. (I understand that it might not be for a few months.)

Bethany said...

braden & julie,
we've been praying for you and your girls! we're keeping up with you guys via the blog and hoping that we will have some time between appointments and stuff to come and visit. i know you guys have to be going through so much and we totally feel your pain and understand a lot of what you're probably going through. (even if we haven't experienced it yet!) please give us a call if you need anything AT ALL! or just to chat, ok? we love you guys!