Email Update Sent October 2, 2006:
Thanks so much for praying and emailing and calling in response to our last email...we feel so loved! Elizabeth is still home and doing well. Praise God we have SUCH a fantastic relationship with our GI team. We were able to speak with our Dr. multiple times over the weekend, and tinker with her diuretics from home in the hopes that she could avoid another hospital admission.
In fact, the next time you pray, thank God for Dr. Rhee. She is phenomenally accessible (she's given me her pager & cell phone numbers, as well as her email...) and is really going above and beyond the call of duty in order to keep Elizabeth on track. (and as a stay-at-home-spouse of a wonderful doctor myself, I'd also ask you to pray for HER husband...the one that she's taking time away from to sit on the phone with ME!)
For now, I'll be taking her in to get weighed 3 times a week, an we'll probably get labs drawn once a week, and in the in-between days, we'll be ready to do more tinkering if she starts reabsorbing. But we're home...that's all that matters. She's held her weight steady since Saturday, so what we're doing (including the prayers many of you are praying) is working!
Thank you again for your support...
Sara (for all of us)
Email Update Sent October 5, 2006:
As Elizabeth's birthday draws near, we're realizing that we need to postpone the Celebration Open Houses we had planned for San Mateo and Clovis later in October. It's just too much for right now. We're so grateful for your prayers, so thankful for your support and friendship and still hope to pull it off one day....just not right now.
By way of a quick update, Elizabeth is doing remarkably well. She's stabilized on her diuretics and nutrition and has been gaining a stable amount of weight. As of Wednesday she weighed over 17lbs! We've had some productive therapy appointments this week, and it's evident to everyone that her nutrition is helping her grow stronger every day. I'd say she was growing like a weed, but "weed" implies tall and thin....she's growing like a linebacker! She has chubby little legs and arms for the first time in her life. Her puking has decreased dramatically, and we are amazed at how straightforward things are right now....she's eating, and keeping it down, and growing...This is definitely an answer to many prayers.
We'll update the website with more pictures soon...
Email Update Sent October 10, 2006:
Today is Matt's birthday! As a happy birthday present for her daddy, Elizabeth weighed in at 8.2kg this morning! (That's 18.04lbs) She's packin' on the weight, and we're mostly sure it's good weight. Dr. Rhee feels pretty certain that even though she's gaining at this rapid (but not extremely rapid) pace, she still isn't displaying signs of respiratory distress and fluid retention, so we can wait to ultrasound her until next week...thereby avoiding any possibility of Elizabeth getting readmitted to UCSF on or before her 1st birthday on Saturday. We're really grateful.
Elizabeth continues to thrive on her fatty formula, and the result is, she's back on the growth charts! Here's a quote from our nutritionist:
"She gained 1.5 cm in her arm circumference in just one month, and significantly improved in both her muscle and fat stores. And, the best part about it is that you can see the difference just by looking at her! Her weight and length for age were right at the 5th percentile, with the resulting weight for length at the 50th percentile."
We're still doing weight checks multiple times a week, but don't need as many lab draws because she appears to be stable. As a result of her increased nutrition, Elizabeth his getting stronger and gaining new skills all the time. She's finally using sign language to say "more" on a regular basis, and is starting to show us a few more signs as well. She's bearing more weight on her arms and legs and she can sit for long periods of time without any support whatsoever. We've been waiting for so long to see signs of real progress in her gross motor areas, so this is a real answer to prayer!
Email Update Sent October 21, 2006:
Hi Friends and family,
The plan was to send you an update after our week of appointments, but that will have to take a backseat to a more urgent prayer request. We're headed back to the ED today...not for anything we've dealt with before. Praise God, she seems stable from a nutrition and ascites standpoint but she's possibly developed a clot in her left foot. (or leg or somewhere thereabouts) Long story short, her left foot puffed up on Thursday night, and in light of her symptoms over the last 48 hours, our pediatrician wants us to bring her in. Because of the questions that still linger about Elizabeth's clotting status (in the past she has both bled (sub-dural hematoma) and clotted (deep vein thrombosis and portal vein thrombosis)) so if this is a clot, then treating her may be tricky. We're still waiting for her blood studies to come back (they were started back in September, but take weeks to complete) so we need God's guidance as to what this is and the best way to treat it if it IS a clot.
In other news:
**Elizabeth is growing beautifully! She weighs 18.6 lbs (8.4kg) and is now in the 10th percentile for fat stores! (She's a chubby baby indeed!)
**Her nutrition has given her the boost she needed to start developing seemingly overnight! She's clapping, waving, on the verge of Calling Dada by his name...she says Dada all the time now, (even when I say, "Say Mama Elizabeth" her reply is..."dada...dada...big smile") She's her daddy's girl for sure! She's bearing more weight on her legs and seems stronger and more solid every day.
We're praising God for guiding us through these last storms, even as we look ahead at one that is possibly on the horizon...Will you pray for us today?
We are grateful for you.
Sara (for all of us)
Email Update Sent October 31, 2006:
Hi friends and family,
I know it's been a long time since we sent an update...after the scare with Elizabeth's foot two weeks ago, we've been stable, but busy! Matt's been working so hard this month and Elizabeth and I have had multiple follow-up visits with doctors to keep us from getting into too much of a routine. However, the theme of our trip to Clovis this weekend was "Don't stop sending emails!" and because we truly appreciate your prayers and your investment in our daughter's life and our lives, we will get back on the wagon, and keep you better informed.
Elizabeth's foot, while still puffy, has remained asymptomatic, so we're pretty certain it is lymphedema (simply - a fluid collection) that should go away with time. This is not uncommon for girls & women with Turner Syndrome, so we're really relieved that it's not something worse. Otherwise, Elizabeth continues to thrive. She's up to 19lbs ( 8.6kg) now, and thanks to a water mat (see picture) she received as a birthday present from Auntie Svea and Uncle David, she's finally decided that tummy time isn't so bad! In fact, thanks to the hard work ALL of her grandparents have been putting in to help her with her PT (physical therapy), just as we were preparing to leave Nana & Papa's house this weekend, Elizabeth rolled from her back to her belly for the very first time!
I can't adequately describe the sense of joy and relief and elation we felt at seeing her reach this milestone that we had many times all but written off as impossible. Part of settling here in "Holland" has meant giving up some dreams and hopes and letting Elizabeth's development occur on its own time line. Something as simple and yet HUGE about her rolling over causes our hearts to hope for things to come.
Each week we go to PT, OT and Feeding Therapy, this week we'll see her cardiologist, and next week we'll see hematology. We're down to every other week weigh-ins and labs, and once a month she'll get her Synergis shot to keep her immunized against RSV ( http://www.cdc.gov/ncidod/dvrd/revb/respiratory/rsvfeat.htm) through the winter. Thank God for insurance to cover this!
On that note, some of you have asked if Elizabeth's medical care has created a financial burden for Matt and I. The wonderful thing is, the total cost for all of Elizabeth's hospitalizations and surgeries is nearing the 2 million dollar mark...and with the exception of copays, our insurance is paying for 100% of it. In fact, at the bottom of the itemized statement we received after her most recent stay, it read, "you have no further financial obligation for this claim. We hope we have been of service to you"...I should say so!!
Thank you so much for staying the course with us...we are humbled by your dedication over the long haul...
Sara & Matt