Blog Archive

Monday, January 28, 2008

Elizabeth's Health Update

This past Saturday we had an appointment with Elizabeth's Gastroenterologist. He's proposed doing a catheterization study, in order to see the exact scope (if possible) of Elizabeth's portal vein clot. This procedure would most likely involve an overnight stay in the hospital for Elizabeth, since she'd need to be on a breathing tube and the procedure would require threading an IV into her femoral artery and trying to reach the clot to deliver contrast. The bottom line is, Elizabeth seems stable on her medications and the next step is to see if we can once and for all fix the problem of her clot and her resulting verices by doing a Rex Shunt (yes...if this sounds familiar, we've been here before). The Rex Shunt requires that there be a portion of the portal vein above the clot to "hook into", so if the study shows that no such site is available, then we're back to square one: waiting for one of her verices to bleed and if one does, possibly listing her for a liver transplant.

After the cath study, she'll get another endoscopy to look at her verices. If, by a miracle, they are improved, then we may possibly be cleared to fly to California this spring...We're praying for that!

All in all we're doing well. We ventured out to church this past weekend...I spent most of the service in the foyer with Elizabeth, who isn't used to being quiet for more than 10 minutes at a time. If we keep her out of child-care for much longer, we're going to need to practice sitting still and being quiet a bit more before trying that again. :) We also made it outside for a few walks and Elizabeth got to practice her walking. Both girls are doing great. Elizabeth adores Ruby and kisses her every chance she gets. Ruby is cooing and smiling up a storm and we're getting into a grove here at home with the help of Ami, a gal we've hired to help me out a few hours every day during the week. She's been a godsend for me and Elizabeth just loves her.

Finally, one more piece of BIG news: Matt passed his board exams with flying colors! We are thanking God for getting us through that and now just have the hurdle of oral boards left. He's been officially offered the fellowship position for next year, so (Lord willing) we're for sure in St. Louis until June 2009.

Park Day

After being housebound for weeks now, Elizabeth finally got to play in the great outdoors this weekend. A warm spell...or more accurately, a "not freezing spell" made it possible for us to take not one but THREE walks. Our play time at the park was her favorite.

Sunday, January 27, 2008

The Hazards of being a Pedestrian

This was Elizabeth as we gleefully departed on our Saturday walk.

This was her on our way back home.

What happened??

The sidewalk happened. She LOVES being mobile and just can't get enough foot action. She loves to march, stomp, "run" (aka: walk really fast) and "jump" (aka: squat and stand over and over, feet never leaving the ground). All of this is great physical therapy, but leads to LOTS of toppling over. She's a trooper though. If the damage is minimal, we say, "shake it off" and after a quick shaking of whatever apendage was hurt, she's off to trip over something else. We may need to buy a helmet if she doesn't pass through this phase quickly!
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Friday, January 25, 2008

She's TWO!

Months, that is. At Ruby's two month checkup, it was unanimous: She's growing like a weed (12lbs 2oz, 22.5 in) and doing great! She hated getting her vaccines, but recovered beautifully. Now it's back to our daily routine of smiling, cooing, sleeping and pooping! Lots to do and so little time.
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Wednesday, January 9, 2008

Walking into 2008!

I hope you've learned by now that a long silence from our end, doesn't mean something has gone terribly wrong...believe me, WE'D WRITE! Instead, we're completely swamped by the new adventure of being a family of four and simply haven't had a free moment in weeks. We all came down with a nasty cold on Christmas Eve, and Elizabeth got an ear infection on top of that. As a result, she wakes herself up every morning with with a hacking cough and a vomit...ugh. After almost 2 weeks of antibiotics and prescription decongestants, she's improving, but still throws up every morning. Obviously this is stressful for all of us, so we'd appreciate your prayers for her complete recovery and our continued health. We also need wisdom as to where to take her in public during this winter...everywhere we go people have colds, and while we don't want to be isolationist, we live so close to the edge already, so a simple cold is a major hurdle.

Aside from her cold, Elizabeth is doing beautifully. She continues to thrive on her formula diet, and in hindsight, we're considering it a bit of mercy that she went back to being tube-fed before Ruby arrived. While it does complicate some things, it also simplifies our life in other ways. In the middle of figuring out what to do with a newborn (remember, we didn't bring Elizabeth home until she was 8 weeks old) and trying to recover from almost 6 months of sleep deprivation, to have to start all over and train Elizabeth to eat by mouth right now might have sent me over the edge. As it is, she's gaining weight like a champ, growing stronger every day and her GI system seems to have fully recovered from the multiple attacks last fall. At this point, we're hoping to teach the girls to eat together...maybe Ruby will be a good influence on Elizabeth! :)

We have a follow up appointment with Elizabeth's Gastroenterologist on the 26th, and hopefully will hear the plan for her next endoscopy to assess her verices. By then, the blood pressure medication will have had a good long while to work, and she'll be close to 10 lbs heaver! We'll keep you posted.

Finally, the best news of the season...Elizabeth is finally starting to walk consistently! I know we announced her first steps back in August, but because of her hospitalization and her underlying low muscle tone and loose joints, it's taken her a long time to master this skill. As I described it to a friend: crawling is easier and takes less work on her part, so walking is a "trick" for her, much like jumping or hopping would be for a typical toddler. Trying to coax her to walk for extended periods of time is like trying to coax a typical toddler to hop everywhere instead of walking. They'd tire quickly and go back to walking. Well, Elizabeth resorts to crawling after a few steps and as a result, it's taken a while to master it. But she has! She loves the praise she receives when she toddles around, and is especially excited to walk if we bribe her with hand lotion. :)

Wednesday, January 2, 2008

Pretty in Purple

Ruby is growing up so fast! She's outgrowing some of her newborn clothes, and this morning I saw the first signs of some chub on her legs.

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