Thursday, March 11, 2010

Bathtime pics

Since we didn't post any photos - I thought I'd give a little follow up with some cute bathtime pics.

Alex really loves taking a bath. She especially likes picking up her cup full of water (with holes in the bottom) and letting it drain everywhere, even if it's in her face. As you can see from the 1st pic, she's still in one of the basic infant tubs, which we're hoping to upgrade tomorrow. We really need something that supports her upright, since she has such a hard time sitting up on her own.

In fact, that was the focus of SB clinic the other day - supportive equipment and what's available that would most benefit her. She really needs something that will support her lower back & allow her to focus on controlling her head & neck. It's just too much for her to do all 3 at once (for more than a few seconds anyway). But we're hoping the HGH therapy, combined with regular physical therapy, will get her trunk control back to where it should be. So far, the HGH therapy seems to be going well, but they tell us it will be a few months before we really start to see significant changes. She does seem to have grown another inch in the past few weeks, which is def a good sign.

Her fevers are still coming & going, but just low enough grade to keep us from taking her to the hospital (around 100F). And still pretty sporadic. But they don't seem to be going away completely, so we're going to wait until the weekend's over & see if we need to make a call to her doc on Monday. Since everything else seems fine - we're trying not to be too concerned about it, but there's always that chance that something unknown's lurking around the corner.

Thursday, March 4, 2010

Spring Fever

I'm sitting here in disbelief that it's been a month since our last post. Where does time go? We've certainly been busy and hit some speed bumps but we are still hospital free. Alex recently finished a two week dose of antibiotics for aspiration pneumonia. We had been to see the pediatrician a couple of times over a 3 week period for unexplained fever and fatigue and finally pinned down the problem. She's doing much better but the fevers are back as of this weekend. Unexplained fever always seems to put us on edge. It can mean so many things and the spectrum is anything from a typical virus running it's course to an infection requiring a hospital stay and anything in between. We are never sure what to expect and just try to remain positive.

We had a speech consult last week and the therapist recommended that Alex have speech therapy about twice a month. Not too sure how we'll fit 2 extra sessions a month into our schedule but somehow they'll get squeezed in. This will make 11 in-home therapy sessions a month for us. Now you know why we are only posting once a month :)

We have spina bifida clinic tomorrow and since Alex is a little older she now goes to clinic every 6 months. We always look forward to clinic and it really helps shape what the next 6 months will look like for us.

The Diffees