Results of Elizabeth's CT

We finally heard from Elizabeth's GI. Basically, he hasn't had a chance to sit down with the radiologist, but his initial review of the report leads him to agree with UCSF's assessment and plan. Since nothing's changed, the bottom line is: she's still too small to shunt (connecting a healthy portion of the portal vein below the clot to a healthy portion -if there is one- above the clot), and at this point in time, since she's not bleeding or having any symptoms that would force our hand, the risks of liver transplant far outweigh any benefits.

So it's still a wait and see game. That is unless something comes up in his conversation with the Radiologist. Praise God for no imminent surgeries and for a stable clot. We're also thankful to hear she has developed some collaterals to decrease the pressure on her verices. How strong these collaterals are, and how long they will last...only God knows, and time will tell. We're certainly happy to take "transplant surgery" off our list of to-do items for before BGH2's arrival this fall.

Thank you so much for your prayers and encouragement. Last week was a big challenge, as Elizabeth got the Roto Virus for the 2nd time, and was miserable, with high fevers and serious GI issues. We are SO grateful for the antibiotics she was put on after her last bout that landed her in the hospital in January. Those antibiotics prevented her from getting a UTI and complicating things this time around. I was able to care for her entirely at home and that, honestly, was therapeutic for me. Too often I've had to hand over the care of my daughter to other people, so to be able to comfort her all by myself was just precious to me.

She's completely well now, and we just said goodbye to my good friend Jillana who flew in over the weekend to offer me some help and respite, and our VERY FIRST date night (read: TWO HOURS ALONE) since arriving in Saint Louis in July. Elizabeth got to practice being a "big sister" to Jillana's daughter and when we dropped them off at the airport this afternoon, we had meals in our freezer, cookies on our counter, organized bins of baby clothes in our basement and hearts full of gratitude.

Here are a few pictures of our week:

Elizabeth playing with her very first tea set...thanks Sophia!

 

Just a sweet smile

 

Matt practicing for TWO! (for reference: Eleni is SIX months old, weighs only 3 lbs less than Elizabeth, and can eat her under the table...though our Peanut can SCHOOL her on her ABC's.) :)

 

Elizabeth and Sara with our sweet friends, Jillana and Eleni

 

Elizabeth's CT Angiogram

Thanks so much for your prayers today. God's grace was evident and we are so thankful to be sending this email from home and not a hospital room right now! Elizabeth hated every minute of the experience, but was a champ. Although she spiked a fever just before the procedure, she handled the anesthesia really well. The timing worked out perfectly and allowed Matt to step away from clinic at ALL the critical times. As a result, I didn't have to handle everything on my own, which was a huge blessing. We're again seeing the benefits of Elizabeth's hospital being integrated with Daddy's workplace.

We don't expect to hear from the GI until the middle of next week, but Matt was able to do a little "investigation" (read: pulling up of her chart). The bottom line is this- nothing has changed since her last CT scan one year ago. The portal vein is still completely closed off, but her spleen hasn't enlarged any more and there is no ascites. We're not sure what this means for any potential surgeries, but we'll keep you informed.

Thank you again for your prayers and concern! Here's a kiss from Elizabeth to say THANKS & "Ni-night"!

Elizabeth's August Update...in September :)

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.

 

Are the Cardinals looking for a new catcher??

The Colors of the Rainbow

What a smart little button we have! She's learned her colors from her signing times video and the funny thing is, the lyrics to the song put purple ahead of blue, so our daughter will be the only girl in her class that says, "red, orange, yellow, green, purple & blue!" Guess that's another reason to homeschool her...then ALL our kiddos can be "out of order." enjoy!

Drum Roll Please!

We have a walker on our hands! Elizabeth took her first tenative steps today...right into the arms of her daddy. We captured the delightful event on camera and are thrilled to be able to share it. She's not ready for the Boston Marathon yet, but this has reawakened our hopes that she'll be more independantly mobile by the time her little sister arrives in a few short months.

This Little Light of Mine

If you're looking for something to make you smile...look no further.

Na Na Na Nah...Hey Hey Hey...Goodbye!

  I forgot to post this earlier...two days ago we said goodbye to Elizabeth's feeding pump. This is the guy who came to pick it up. We're giving her all of her boluses with syringes now, and she hasn't needed any food overnight for months now, so we're hopeful that this will be goodbye to her pump forever, AND the first of many steps toward her eventual g-tube wean!

Thank God for Basil!

It's been a while since we updated you on the happenings here, and I wish I could say that after the last update things turned around completely. Unfortunately our circumstances haven't changed much, but little by little, we're learning to press on despite our circumstances and "just trust God" with so many of the details that are simply not working. As trite and simple as that sounds, in doing so, have found some measure of peace and grace.

Elizabeth's feeding: We're moving forward with the "feeding guru" we've heard about in the Bay Area, and will have a phone conference with her next week to discuss the video we sent her of Elizabeth eating a meal. We're praying that she has some insight and wise counsel. In the interim, we've made some progress which has helped my attitude quite a bit...she's taking 3-5 meltable gerber stars before each meal...and actually learning to chew them with her molars as they dissolve (BIG step towards age appropriate eating). We've been able to get her to close her mouth around the spoon...so I no longer "pour" her puree into her mouth one spoonful at a time...she actually takes a bite now! And, she's allowing us to put a vibrating wand into her mouth and explore around her cheeks and tongue, which in the long run will help desensitize her to textures. All of these are actually very big steps and we're so proud of her progress. She still vomits daily, and we're convinced she is "volume restricted" for some unknown reason. We've met with her new Gastroenterologist and are pleased with him so far. As I told Matt, "He's old enough to have some experience and wisdom, but young enough to really engage in getting to the bottom of some of Elizabeth's chronic issues". We're praying that God will give him unique wisdom for treating our daughter!

Additionally, we've now got Elizabeth's Physical and Occupational/Feeding Therapies set up and we like how things are going so far. Elizabeth loves the therapists, and they've got some good ideas! As an added bonus, the sessions are in our home...which is LOVELY. The fewer car trips the better! These are two recent pics that melt my heart. The first is her playing with a cart we borrowed from our OT. She loves toddling behind it dispite the sour expression. :) The second is of Elizabeth pretending to give herself her meds. She's pretty good at it after watching me do it for the last 22 months!


My pregnancy: We had our first appointment with my new Perinatologist (an OB for high risk pregnancies) and were told that my previa is pretty severe and unlikely to resolve. While that's disappointing, we're choosing to focus all our prayer energy on asking God to keep me from bleeding. Bleeding is a high risk in the case of Placenta Previa, and has all sorts of possible outcomes (including premature delivery). The difficulty is, if it starts, I have to be admitted to the hospital. Obviously a hospitalization doesn't fit so well into our life right now, so we're asking God that he would protect us from that AND help us to meet some really nice folks really soon, so we'll have potential babysitters lined up if the need arises!

Finally, Matt's job remains a disappointment. There's not much to say except we're desperate for God to give us His perspective on a seemingly hopeless situation. The good news is, we are certain that we came here with God's guidance and blessing. The challenge is, WHY??? We're guessing this is a bit of how the Children of Israel felt when they got to the edge of the Promise Land and discovered they would have to battle the giants of the land in order to inhabit it. We are determined to walk by faith and not by sight and of course need heaps of grace in order to do so!

A few nights ago, Matt and I were reflecting on our life here and the fact that the new herb garden he planted when we arrived is 1 for 3. So far, it has only yielded basil. So as we were falling asleep, Matt said, "Let's name our basil." And so we did...Thank God for the things that have gone right so far: Air Conditioning in the midst of record breaking SL heat, cars that are working, Elizabeth's delightful spirit and obedient heart, a great co-fellow for Matt, a great lead on a home church for us, only blocks from our home ( www.journeyon.net), a basement, a healthy baby inside of me, a washer and dryer inside our house, a refrigerator with one of those door dispensers for ice and water...lovely, a BBQ grill which is making dinners so much easier and fun!, the support from afar of family and friends & God's faithfulness through it all.

We'll keep thanking God for all the basil until the other herbs arrive...

Elizabeth (and the rest of us) Update - July

As we're settling in to our new home and finally making some headway with all those boxes, we wanted to ask for your prayers for a few things...

Elizabeth's feeding: I'm particularly vaulnerable to dispair in this area. While we've seen some MAJOR progress in the last 6 months, we've hit a bit of a snag. Since the move we have been unable to recapture some of the enjoyment of eating that we saw glimpses of back in SF. I'm hopeful that with a whole new team of Dr.s and therapists, we'll be able to get some good input and make further progress, but at this time, she's taking about 50% of her food by mouth, vomiting 1 or 2 meals a day and the only thing she expresses enjoyment of is purreed mac'n'cheese. While that's something...I can't feed her a 1000 calorie diet in 80cal doses of mac & cheese. Add to that the awareness that kids in her position often latch on to one thing and if we're not careful, she can max out on it, suddenly stop liking it, and then we're back to square one.

I've got a lead on a fantastic intensive feeding therapy program with great success rates (ironically, back in the Bay Area and JUST approved by our previous insurance....oh the timing) but the therapy itself costs close to $17,000 and isn't covered by our current insurance. She's willing to give me a consultation and some input for 170$/hour....and that's beginning to look REALLY appealing. So we need wisdom and grace. I'm looking ahead at the arrival of Baby Girl Deux and can't begin to imagine tube feeding and breast feeding and juggling both all alone. That said, I couldn't have imagined "doing" our life as it is now, and yet somehow God has provided the grace and strength for the past 2 years. Now we need Him to fill our resevoir once again.

My Pregnancy: Also a bit of a challenge. I'm taking things slowly, and by the grace of God have avoided symptoms that would require bedrest, but we're asking the Lord to heal me completely and let us proceed with a "normal" pregnancy. This coming October, our family will fly to the Bay Area for a Memorial/Family Reunion weekend in honor of my Grandpa's passing. I really want to be there, but need an uneventful pregnancy in order to get travel clearance. Would you join us in praying for God to bring His resolultion to these details, and for us to walk in trust and peace while we wait?

Matt's Job: has turned out a bit differently than he anticipated. He specifically needs favor with his boss, so that he can discuss how to make things work moving forward. In the mean time, he's exhausted, frustrated and sees no end in sight. Would you pray for grace and encouragement for him? He especially wants & needs the Holy Spirit to guard his tongue so he doesn't make matters worse with his words.

Finally, our move has been somewhat of a challenge as well...lots of sickness, MANY extra expenditures that simply didn't need to occur. And all in all, where things could go wrong...they have, and where things just shouldn't go wrong...they have. So we're weary! We need grace, stamina and overcoming faith to maintain our joy these days. We'd really appreciate your prayers for us to that end.

Here are some recent photos of Elizabeth:


Tasting a pickle - she actually liked it! Salt, vinegar...what's not to love? Do you think I could count this as a vegetable??


Walking with Daddy


Just hanging out with Daddy



Playing in her spilt milk. I was measuring her food, turned around and she was splashing away. The funny part is, I didn't for an instant think about the $5.50 I'd just paid for a 1/2 gallon of organinc, hormone free milk (250ccs of which were now mositurizing our tile floor)...instead, my first thought was, "oooh, this is good therapy...'Splash Elizabeth! Enjoy the wetness! Get it all over!'" :)


I love this photo. This just feels like "normal kid eating" to me. It's probably because I have a photo of me at a similar age...face covered in spaghetti. In this shot, she's signing "signing times"...trying to get me to move out of the way of her video...silly kid!

Fun, Fun and more Fun...

  So Elizabeth LOVES the Hokey Pokey. It helps that she has an Elmo doll that sings and does the dance, so she's learned how to put her "right foot in" and "shake it all about"...it's the cutest thing. Here, she's doing it with daddy.

  Today at Costco we tried a sample of chicken nuggets...she LOVED it! So I bought them (of course) and here she is trying them at home. By trying, I mean, she chewed off a piece, sucked all the salt and flavor out, and then spit it into my hand. Hey, in the world of feeding therapy, that's HUGE progress.

  Elizabeth LOVES the swing. She says "whee!" over and over to tell you she wants to go on the swing. We finally hung one from our back porch (now that we have one) and she's in pure heaven.

 

I can't say that I blame her. Now if we could only find a way for us to recreate this indoors...where the air conditioning is!

Thanks Daddy!

Settling in St. Louis

We've arrived! Elizabeth did beautifully on the plane. (for those of you who prayed for us specifically...we had an open row on the first leg which was delightful. The 2nd leg was jam packed, but Elizabeth was a perfect angel and I couldn't have been more proud.)


Our arrival was not without its bittersweetness...On July 11th, My grandpa (who has been living with Alzheimer's) passed away on his 88th birthday. We are overjoyed that He followed Jesus and is now whole in body, mind and spirit, but sad over the loss of someone we love so much. My sister wrote a beautiful tribute to him on her blog: www.worthtenthousandwords.blogspot.com. We will miss him.


Since arriving, Elizabeth has certainly flourished in her gross motor activity. She's crawling everywhere, pulling up on everything and exploring her new world. After only 3 days her daddy thought it was high time for her to tackle the stairs...check out these videos of our super-climber! http://picasaweb.google.com/saraharms/ElizabethClimbsStairs

We're now in the process of setting her up with her new medical team and getting her scheduled for early intervention and her Physical, Occupational, Speech & Feeding Therapies. While she's flourishing in her gross motor development, as is to be expected, Elizabeth regressed quite a bit with her feeding during our 3+ weeks of upheaval. I hear this is normal for toddlers, but when the stakes are so high, it can seem even more dire. I've been trying to restrain my anxiety and slow the pace of progress a bit and thank God, we're beginning to recover some lost ground. If you're interested, the following is a short video about feeding disorders that may help you understand what our life has been like and what the future would be if she wasn't learning to eat. http://www.kennedykrieger.org/video/cnn_feeding.wmv

Matt is enjoying his job more and more as he gets acclimated and most of all we're loving our new life of evening walks, grilling on the back porch & chatting with our SUPER friendly neighbors (everyone out here talks to you!) I'm still wrapping my mind around the fact that I can actually pack away all those sweaters, jeans and coats we used year round in SF, because we won't be needing them for a good 3 or more months! The humidity hasn't killed us yet though, and we're eager to explore free zoo, the science center and the huge park a few blocks away. Bring on (sub)urban life!

Happy 4th of July

Just a quick note to tell you we're doing well. Here's the rundown:

*After spending just 4 days in the wide open spaces of Granna & Papa's house, Elizabeth is a mobile child! In honor of Independence Day, Elizabeth started to crawl....I mean, really crawl...check out this video. http://picasaweb.google.com/saraharms/ElizabethCrawlsForReal. She's also pulling up on everything and generally acting like a toddler, which is warming my heart and delighting anyone who happens to be in the room.

*We've found out that sometime in December Elizabeth will get to share her room with a....little sister! That's right, Baby Harms Deux is a girl and we're thrilled. Because of Elizabeth's condition, I've been more closely monitored this time around, and the good news is, on our most recent level 2 ultrasound & fetal echocardiogram, BGH2 looks great! We're not seeing any of the problem signs that were present on Elizabeth's ultrasounds, so we're thanking God for that. Unfortunately, they've discovered a few problems with me this time around, the most notable of which is, placenta previa...a condition which means the placenta is covering the cervix, and if it doesn't resolve by itself (which it can) will require a scheduled c-section for delivery. While I'm disappointed to be looking ahead at another "high risk pregnancy", Matt and I are already experiencing God's peace. Would you join us in praying that God would heal anything that's out of line in my body and protect our new baby girl?

For the moment, this diagnosis means I need to "take it easy" in order to avoid being put on bed rest. In an interesting twist, it appears that my sacral-iliac strain from earlier this spring, while frustrating and painful at the time, may have been just the thing that kept me from overdoing things during a critical part of my pregnancy. God works in mysterious ways.

*Finally, we head out to Saint Louis on July 10th, and will finally join Matt who's been spending every spare minute moving us into our home. Praise God for Matt's INCREDIBLE parents who have literally made this move happen for us. We can't wait to see our new home but in the mean time, Elizabeth and I are savoring our last few days with family.

Thanks for your prayers for our journey. We'll let you know when we're safely in Missouri.

Here's Elizabeth enjoying a popsicle...she didn't really eat it, but she did enjoy a lick or two.

The Harms Girls enjoying the pool!

Expansion on the horizon

 

It sure looks like the baby's growing at 16+ weeks!

Wrapping Things Up

We can hardly believe that our time in San Francisco is quickly approaching an end. In less than a week we'll be loading our truck! As we celebrated our 8th wedding anniversary this week, we marveled at how good God has been in His provision. You all have been part of that provision and we feel so blessed by your participation in our lives through prayer and encouragement these past years.

Elizabeth is doing really well. We are so thankful to be leaving the Bay Area with her health in a stable place. She's graduated from feeding therapy...and continues to eat almost all of her food by mouth! She's set to receive services for PT and OT when we arrive in Saint Louis, but at this point, we're not stressed about setting those up, and can afford to settle in a bit, because she's doing so well! She's cruising all over the place and has mastered her "protractor crawl" as we affectionately call it. I'll upload a video to our blog soon so you can enjoy it with us...it's among the cutest things I've ever seen. (Lucy Cutler's "lame crab crawl" also being up there!) Her clot appears stable and her heart looks great so in every sub-specialty we're leaving with instructions to follow up and referrals for new doctors, but without the need for urgent appointments....Yipppee!

Hopefully the next time you hear from us, we'll be celebrating a smooth move and will be settling in to life with 2000 square feet. Would you join us in praying that God would protect Elizabeth's health in the transition and that He would provide grace for us as I fly alone with her to our new home?

Much Love from all of us.

Play Date on 6 Long

6 Long is hospital lingo for the pediatric floor at UCSF. We spent much of last summer there and went back today to say a final goodbye to our beloved GI and GI Fellow. Sue and Michael have been a tremendous blessing to us and have poured hours of their time and tremendous energy into her care. We will miss them. In a tribute to how wonderful these two are, we sat on the floor and played for an hour...celebrating all the progress we've made. God is good.

New Beginnings

We're hopeful that the blog format will make it easier for us to post and easier for you to navigate our site...As we launch off for Saint Louis, we are hopeful that we can continue to stay in touch. Know that we cherish the support we've recieved from so many of you. Thanks for hanging in there through it all.

Success in Saint Louis - June 07

Email Update Sent June 7, 2007:
Hi Everyone,
Our trip to Saint Louis was successful on every account. For the first time, I laid eyes on the city which will be our home for the next few years, and we found an amazing townhouse in a great location for a great price. Elizabeth had a heavenly time with Granna, and I think Granna was in heaven herself. Thank you for praying.

In other good news, Elizabeth is wrapping up all her visits with her specialists this month, and so far she's doing great. Her Immunologist and Hematologist have said we can wait to get settle before getting her set up with those specialists there, and her endocrinologist is thrilled that she's maintaining her growth curve on the regular (not Turner adjusted) growth charts, so we don't need to discuss hormone shots (a daily injection) for the time being. Of course we're really thankful not to have to "go there" yet.

We'll be busy graduating packing and moving for the next few weeks so if you can, don't forget to stop by our apartment to say goodbye on the 23rd.
Thanks again,
Sara (for all of us)

Elizabeth Archives - May 2007

Email Update Sent May 9, 2007:
Hi Everyone,

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.

Love,
Matt, Sara, & Elizabeth and Baby Harms 2


Email Update Sent May 29, 2007:
Hi folks,

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.
Love,
Matt & Sara

Elizabeth Archives - March 2007

Email Update Sent March 1, 2007:
Hi friends and family,

Elizabeth sat up by herself for the first time today! We are praising God for yet another miracle milestone in Elizabeth's life. I think the little dance of joy I did after turning off the camera actually scared her a bit, but it was worth it. It's been a long time coming. Watch this video and rejoice with us! If for some reason you can't open the video, you can email me and I'll fill you in on the reason for our delight....

Love,
Sara (for all three of us)


Sent March 20, 2007:
Hi Everyone,

This will be a quick update since Matt and I are on our way out the door to fly to Germany for his sister's wedding. My mom will be staying with Elizabeth here in our SF apartment. She came over a few days ago and is already a pro at setting up Elizabeth's feeds. No sooner had she taken over responsibility for our little one, than it was "Cookie time with Granna!" This promises to be a delightful week for the two of them.

The quick news on Elizabeth is: She's eating about 1/3 of her calories by mouth....getting stronger and more active every day, she's delighting her therapists with her progress and remains a joy to be around.

Will you please pray for us as we leave her for the very first time? I've never spent a night away from her and my heart is aching already.

Pray:

- That Elizabeth will have NO health complications this week.
- That Granna would have grace for the task of caring for Elizabeth and that her memory would be sharp.
- For safe travel for Matt and I & that we would not meet any unexpected delays or travel complications.
- That Elizabeth would be blissfully unaware of our absence (too much to hope??) and that Matt and I would have grace to enjoy our time away and not be too homesick.

Thanks so much!
Love,
The Harms


Sent March 28, 2007:
Hi friends and family,

Matt and I returned home Monday afternoon to a very content Elizabeth. Our trip was wonderful, the wedding was absolutely perfect in every way....simply stunning, and our travels were safe and uneventful. Elizabeth however, had quite a week. On Friday night she was admitted to UCSF again with a possible UTI and in the end they concluded it was a virus (unfortunately probably picked up while doing her favorite activity....swinging at the park). She was discharged on Sunday afternoon, but in the mean time she and my mom had quite a crazy few days.

The good news is, my mom and Elizabeth handled the hospitalization like pros. Our favorite Dr., Michael, was on service and he was vigilant and attentive. My mom was unable to reach us until we returned from the reception at 4:00am on Sunday (Germany time), which was frustrating, but in the end, meant that Matt and I were able to fully participate and enjoy Julia and Ralf's wedding rather than stressing over if and how we should fly home early...which in the end wouldn't have changed much. This is yet another instance where God chose to provide grace, strength and resource for the crisis rather than allowing us to avoid it. We are so thankful that He carried us through again, and yet still hope the "crisis avoidance" days are on the horizon. :)

Elizabeth is well again and adjusting to having us around and not seeing Granna every morning. We're all happy to be together and thankful for the amazing job my mom did at keeping Elizabeth in her routine and doing so well while we were gone. Thanks for keeping us all in your prayers.

Love to all,
Sara (for the Harms Family)