In the weeks since our last update, Elizabeth has been doing well! Matt's parents came to visit over a long weekend and the extra attention (that only Grandmas can sustain for 4 days straight!) enabled Elizabeth to make huge progress in her language and gross motor development. Okay that's the "medical-ease" way of saying, she's learning all sorts of new words and phrases ("ByeBye Daddy" and "Hi Daddy" being among her favorite) signing her colors and ABCs and taking her first steps! Of course we're so proud and at the same time, SO thankful to see her doing things that we at one time didn't let ourselves dream about.
Her feeding is improved as well, though in the last week it's taken a downturn, and she's gagging on almost everything I give her. Ugh! It's the roller coaster that I never become fully accustomed to. SUSTAINED forward progress is what I want, but 2 steps forward...1 and sometimes 3 steps back, is what we get, and I still struggle not to feel defeated every time I see that backward slide.
Two weeks ago I had a phone consultation with the "Feeding Guru" in the Bay Area. We'd sent her video of Elizabeth eating and she was able to give me some VERY specific feedback, as well as helpful suggestions. (For the mommys on this list who have kids with feeding disorders, let me know if you want the details, I'm happy to email them out. All of her suggestions have been really successful in their application) The conversation was a total answer to prayer. I feel encouraged about what I've been doing and now have some more tools in my belt. For the time being we're going to work on implementing her suggestions, and if we reach a point where we need her help teaching Elizabeth to chew (nothing comes naturally to these kiddos...it's all a process of teaching her how to use her muscles..."waking them up" so to speak) we can schedule an intensive 5 day intervention on a visit to the Bay Area.
Finally, and the issue most immediately in need of prayer, Elizabeth's GI is eager to "deal" with the clot in her liver. Though she's still not a perfect candidate, he wants to investigate the options of a shunt to bypass the clot or a liver transplant. To that end, we'll be undergoing a CT Angiogram & Liver Biopsy at St. Louis Children's Hospital on Thursday (8/6). This will be our first time overnight at a new hospital and I'll admit, I'm a little anxious about a totally new group of people. I'll miss our VIP treatment from the folks at UCSF Children's Hospital (Michael, could you call and suggest they test her for Roto Virus so we can get a private room??) and will DEFINITELY miss the support of friends and family. We'd really appreciate your prayers for a complication-free procedure. Additionally, we don't know what is best for Elizabeth at this point. We need God to give wisdom to her Dr.s so they can make the wisest decisions in caring for her.
I'll send out an email to let you know how things go. Meanwhile, here are a few pics from our last few weeks.
Elizabeth loves to help me unload the dishwasher. Can you imagine why?? Eventually these utensils made it into the drawer.
This is the easiest way to call her grandparents these days. It's just the right size for little hands!
An Elizabeth Sandwich.
Our new Missouri license plate, and evidence that BGH Deux is growing.