Saturday, August 18, 2012

18 months!

Hi everybody!
I can't believe my (not so little anymore) baby turned 18 months yesterday! It blows my mind because I still remember when they talked to us about her last year in May and said she may not make it to her 1st birthday and here she is, still going, still hanging in there.
The past 3 months have been crazy, as some of you who follow our facebook page may know, she's been in and out of the hospital several times since the beginning of June. She was just discharged from another stay in the hospital this past Wednesday. She was there from 8/2-/15, this time she was de-satting and turning blue again on Zev and Jill while I was at work. I got a call from Zev first saying they were calling 911 because of her respiratory distress. I got to the ER before they did and it was crazy of course. So many people were talking, it was complete chaos, I think I was asked by 4 different people what her vent settings were. But eventually the commotion died down, they took some X-rays and  found that her top lobes of her lungs were  collapsed. They also did urine and blood tests, and found that she had 3 infections, one was tracheitis (common infection for kids with trachs), another UTI (makes sense since we've been cathing her), and a viral infection of the common cold (not sure where she got that from). Of course, her movements get worse when she's infected with something, but with 3, she was pretty miserable for the first week there. Also, the first 2 could be treated with anti-biotics, but the cold we'd just have to wait it out, since they don't have meds that fight off virus's (sp?).
Of course, something always has to go wrong, while we were there they accidentally gave her one of her medications with glucose again, even though on her chart glucose is listed as an allergy because of her ketogenic diet. But they only saw some small movements and were able to control them, but every time we go to the hospital, they have to screw something up. This is also the 3rd admission that they've done this, so you would assume that Pharmacy would figure it out, but no; they did it again.
Neurology ended up going up a bit on her Topamax and Clonopin, after we had gotten her to be weaned off of some of it, but they said it would only be for a bit while she's sick so that she is more comfortable and it actually has helped quite a bit. I would like to get her back to her weaning schedule though. They also did a few more EEGs and found that she was having more of the infantile spasms than before, which they attributed to the infections.
We were going to go home on Monday the 13th but she starting having more de-sats and they didn't feel it was safe yet. They even went so far as to imply to Zev (without me there) that she was on her last legs and we should prepare for the worst. It was a shock to Zev and of course, when someone tells you that you believe them. But after we spoke on the phone I told him that I thought she just looked that way to them because she was sick with 3 different things. I don't feel like she;s ready to let go just yet, and especially now that she's been home, she's been very stable and comfortable here, with her heartrate as low as 98 bpm wen asleep. We know our daughter and we know when she's happy and when she's mad and when she's sad, the doctors only see her when she's sick and always assume the worst possible outcome. But I have faith in her and I think when that time does come, if ever, she will let us know in her own way. And we'll cross that bridge when we get there. But I don't feel like it's time yet. For now, we're going to continue loving her as much as we can, and showing her that she is so loved by so many and that she has plenty to live for, even if it's just for the caresses and songs we sing to her.
I'm super nervous/excited to go the Star Wars Celebration VI in a couple of weeks. I'm nervous because our nursing agency hasn't found nurses for that weekend yet and my mom won't be available to help out because she's going to visit my sister in Connecticut. But, hopefully we'll get people and if not, he can always take her back tot he hospital, which would suck but is the last choice.
I'm really excited to meet all of Leah's supporters there, it's going to be great to be able to tell them in person how much of a difference they've made in all our lives. I'll also be going to Dragon Con in Atlanta the following weekend for work, where I'll get to meet even more of them there as well. It should be really fun, though I still will miss my babies (Zev included).

On one final note, to wrap this up, we cut Leah's bangs today and she looks absolutely adorable!
Check it out!
and here's one from right before that:

I'll post some more stuff tomorrow.


  1. Beautiful pictures, simply beautiful!

  2. Thanks for sharing the gorgeous pics! And hope you have a blast at CVI. Prayers for getting thee nursing care sorted.