Email Update Sent May 9, 2007:
Since the last time we updated you was Easter, there's a lot to report.
The last 3 weeks have been full.
I celebrated my 30th birthday with a helicopter ride over San Francisco...it was a surprise from my darling husband and it was wonderful.
Matt spent 9 days in Boston for a Neurology Conference and I took advantage of his absence to take Elizabeth to a mini-family reunion in Clovis. All of my siblings and nieces (except my brother in law) were in able to visit, so we had some fantastic cousin time. Elizabeth loved being around girls her age, and spent lots of time trying to hug and kiss them. When she wasn't giving away love, she made her first trip into a toddler pool, was hand fed kix by her cousins, and walked barefoot on grass for a few seconds. Oh, (BIG NEWS COMING HERE) and she's started, in her very own unique way, to crawl! That of course is huge news for us...it's really important for her trunk and "shoulder girdle" to bear weight and grow stronger, so the fact that she's motivated to move in this new way is a big blessing. We've got an email-able video if you want to see it. Just let us know.
Upon returning home, we had a cardiology and audiology appointment, and both delivered good news. She's stable from a cardiac standpoint and her slight mitrovalve stinosis hasn't progressed at all. We also learned she has normal hearing in at least one ear. (imagine trying to figure out if an almost 19 month-old can hear...from each ear...without being able to ask them...amazing) We'll just need to do some follow up tests to try to isolate her questionable ear over the next 6-12 months, but we're hopeful.
For those of you who have been praying for Elizabeth's feeding so diligently, please keep it up! We've made some real progress recently. After a resurgence in her nausea and vomiting for about two weeks, corresponding with an increase in her diuretics, we got the green light to go back to her old doses and she's doing quite well now. I decided to go out on a limb and try something I'd read about, called a "trial wean" where for three days I only feed Elizabeth what she'll eat by mouth, and make up the rest of her volume requirements with Pedialyte (like infant Gatorade) so she feels full but doesn't get the calories. The goal is for her to start to feel more hunger each day and realize she needs to eat more by mouth to fill her belly. (often it can take 3 or 4 trials over a number of months to reach the goal of weaning entirely)
Well today was the third day of the trial and she ate her entire caloric goal by mouth. Every bite, every taste...every one. I had the help of some new Signing Times videos to distract her while she ate... and I was even able to introduce 2 foods she'd never had before and she ate them all! God is so good. I'm so overwhelmed. It's nothing short of a miracle.
Matt his helping to remind me that Elizabeth takes the slow route, and one day's success doesn't always translate into steady progress...it's true, but my mommy's heart is so happy that at least once, she's done it, and there's hope that she may even do it again! Will you pray that my heart will be protected from despair as we ride the ups and downs of feeding and weaning? (If you'd gotten this update only 1 week ago, it would have contained a lot more despair, so the ups and downs can come quite quickly these days.)
One final joy and prayer request, we've discovered that Elizabeth will be a big sister in December. Matt and I are expecting again! We're thrilled, and yet not taking one day of this pregnancy for granted. Will you join us in praying for the health of this new life? We've already seen our OB, and are encouraged that so far, God has protected our hearts from fear. I imagined that my future pregnancies would be plagued with fear and worry....and so far we're doing good. We are actually experiencing a lot of hope, and that in itself is encouraging.
Right now though, the most palpable thing I'm feeling is nausea! And in a sad turn of events, I overexerted myself and ended up straining a ligament near my right hip, which has left me in a lot of pain and experiencing some trouble caring for Elizabeth. Fortunately, she is such an obedient little one, and I'm seeing the fruit of our early training, as she hasn't wrecked havoc on our apartment while I've been flat on my back! I'd really appreciate your prayers for a quick recovery, for grace to move slowly and carefully, and for Matt who's got a lot of stuff on his shoulders already.
We love you all, we're so thankful for your continued prayers and support. Here are a few pictures for your enjoyment.
Matt, Sara, & Elizabeth and Baby Harms 2
Email Update Sent May 29, 2007:
This weekend, Matt and I will head out to Saint Louis to see if we can find a place to call home for the next two years. We're wildly optimistic since a preliminary web search has produced some enormous places for really cheap compared Bay Area real estate. We are still asking God to direct our steps, as we would like to live near to both the Barnes Jewish Hospital and to our new church home...which we also have yet to find. On that note, if any of you know of any good churches you could recommend in the Saint Louis Area (we'd LOVE it to be as diverse and alive as Abundant Life ( www.alcf.net) ...is that possible?)...please let us know. We'll probably check out a church this weekend while we're in town, so we'd love to have a good lead.
While we're gone, Elizabeth will once again be in the capable care of her Granna Peterson. Would you pray that it is a non-eventful weekend for both of them? (We'll be gone June 2-5) I had a dream last night that we were rushing home from somewhere because Elizabeth had gone back into the hospital. While I wouldn't have admitted to feeling anxious, clearly there's some apprehension somewhere in there, so I'm entrusting Elizabeth to God's care and asking that He would allow her to remain well and at HOME while we're gone. (oh and for the rest of her growing up years...as long as we're asking!)
Elizabeth has been doing really well lately...growing, eating more by mouth, acquiring new words both verbally and in sign language every day, and doing ton of standing and scooting and crawling and moving. We're so thankful for her progress. On Friday we got together for a first ever date with the 5 gals and kids that make up our "G-Tube Support Group". We moms have gotten together for the last year to encourage one another, exchange advice, listen, cry and simply walk with one another through the journey of tube feeding. Our kids range in age from 1.5-3 years old, and in 9 months Elizabeth has gone from eating the least among them to being one of the best eaters in the group...Go Ej! That is a testimony to God's faithfulness in stopping her random vomiting last Christmas (we still have no explanation for it) and a LOT of hard work on the mine and Elizabeth's part. Despite the progress, Elizabeth's feeding still remains the most stressful, time intensive aspect of our lives, so we greatly appreciate your continued prayers.
Hopefully we'll have a brand new address the next time you hear from us.
Thanks for your friendship and prayers through it all.
Matt & Sara