Under the knife

After getting up at 4am (not really even sleeping) and getting here for 5:30 check-in, then being admitted & prepped, we were told by the anesthesiologist that since Alex is sick (with RSV) he didn't think it was a good idea for her to go under. Not exactly the thing we wanted to hear after everything it took to get her scheduled for this surgery. He told the nurses to hold off on the pre-op stuff while he went to talk to the neurosurgeon. A bit later he came back in & said that apparently this procedure is urgent enough to outweigh the risks associated with sedating a baby with respiratory problems (most importantly that she would likely need to be on a ventilator for a few days - ah...the good old vent). So needless to say, this wasn't the ideal start to our day.

But the show goes on, we let them do their thing while we went downstairs to get some breakfast. Then we saw Jane (from Neurosurgery - the one who originally ordered the MRI, and pulled all the strings to get it and this surgery scheduled asap) who came to sit with us at our table. Jane is so sweet, we like to think of her as Alex's Aunt Janie. She explained the butts she's had to kick in order to make all this happen, and the importance of this surgery - how it could be the solution to so many of her problems (although it's no guarantee of course). It was much-needed reassurance, and she's so nice that it really put us in a positive mood about the experience.

So now we're waiting, half asleep, for what will likely be a 3-4 hour surgery where they are opening up the base of her skull and making room for the fluid to flow freely.

Thanks to everyone for all the prayers, we sure need them. We'll keep you posted as soon as we hear anything new.

Lots of things going on

Time for an update - sorry it's been a while, but we've had many unknowns regarding her condition for the past month or so. She's been completely happy, but definitely not completely normal for her age. We've had several studies scheduled, mostly for this week - such as: Urodynamics study to determine her kidney/bladder function, Swallow study and Pulmonology consult to determine her oxygen needs and wheezing after eating, and an MRI to determine why she would occasionally stop breathing in her sleep.

On Sunday we decided to take her in to the hospital because she was having some labored breathing. They admitted her & we found out that she has RSV, which is a virus that attacks the respiratory system. It's pretty common and usually misdiagnosed as a cold.


They kept her overnight, and then sent her over for the MRI on Monday evening,and got some pretty shocking results. Apparently she has pretty severe Syringomyelia, which is an accumulation of fluid in the spinal cord due to the area around her brain stem being compressed. This is part of the Chiari malformation which happens as a result of the spine pulling on the brain during early development in utero. For more info, see this page.

Based on this new diagnosis, they've canceled all her other appointments and scheduled her for surgery this Thursday to decompress the area around the brain stem. We're not sure exactly what all that entails, but think it might be something like what's described on this page (although I really don't know where the similarities lie).

So please pray for the little angel, as well as her parents - this looks to be a pretty big week for us all. There's a chance that this surgery (if all goes well) could fix many of the things that have been wrong with her, but it certainly comes with some big risks.

Thanks for staying with us,
-J&N&A

She's so big

And cute. We had to snap these when we were changing out her oxygen stickers. She looks like a different person without them.

Her 1st gig

Here are some shots of DJ h.a.d. mixing it up at the Space Gallery on a FirstFriday.

Sleep Study

We've been trying to figure out why Alex has been needing the oxygen for so long, so we have several tests scheduled to see if it has to do with her sleeping or breathing or swallowing. We just had her in for a "sleep study" where they hooked her up to a bajillion wires & monitored everything about her while she slept. We haven't really gotten the results from it back yet, but we did get some funny pics.


Also, get a load of this random shot of her lounging around after drinking a six-pack of daddy's home-brewed stout. Wow.

More New Years pics & video

Here's a really cute video of Alex laughing. For some reason she thinks it's funny when we make yapping dog sounds (you need to have the sound on for the full effect). Here are also some good B/W pics we took.

Happy New Year

2009 is great year so far. On Jan 1 Alex decided to eat her 1st meal of "solid" food: baby cereal mixed with banana. She's since moved on to pureed bananas, and as of today, pureed prunes. She loves it all, as you can tell from her cheeks (and this video).

She's smiling and laughing all the time too - such a happy baby. Which makes us happy too.

Happy new year to everyone!