Still home, still steady...

This week, we had appointments with our Pediatrician, GI, Occupational Therapy and Physical Therapy to assess how Elizabeth is doing now that she's home. The good news is, she appears to be stable! She's getting some of her strength back, and with the help of her new orthodics and sassy new shoes (thank God for Target and cheap cute shoes!) she actually spent some good time on her feet.

 

At our GI appointment, we got the results of last week's intestinal biopsy. The mixed blessing is, there's no real diagnosis...just dilated lymphatics, which are probably a result of her portal hypertension. We're relieved that she doesn't have yet another illness, but this leaves us without a clear option for treating her diarrhea and seeming mal-absorption. So that will just have to be dealt with in baby steps over the next weeks and months.

We've started her on blood pressure medication and will see our GI again on Thursday and get labs drawn so we can see if she's retaining fluid, absorbing nutrition, keeping her anemia under control, absorbing potassium and finally, to determine if her liver is processing ammonia properly. (She's been out of the hospital for over a week, but remains extremely tired...possibly as a result of a build up of ammonia in her system from a liver that's not working perfectly)

In the middle of this, Elizabeth's caught a cold, and continues to have a serious diaper rash! We spent much of the afternoon moving a waterproof pad around on the floor so she could have some "air time". She still managed to pee on our floor and her bed. :) Thank goodness for hard-wood floors!

We're enjoying beautiful fall days here, and even made it out for a walk and some swing time at the park. She loved it. My muscle strain is vastly improved thanks to all the help we've been receiving. I'm at 35 weeks now. We're anticipating BGH2's arrival at the end of November and praying that God would protect Elizabeth from any more hospitalizations or complications before then.

 

Home and Holding Steady

To begin with, Elizabeth has remained “stable” since leaving the hospital. Her ascites has remained the same and her diarrhea continues unabated. As soon as we push in 5 ounces of formula into her G-tube, approximately the same amount comes out the other end! We are very thankful for the absorption capacity of modern disposable diapers and in-home laundry machines. Because of her frequent diapers, she’s also developed a whopper of a diaper rash- the kind that brings her to cry and say “awe-done” every time we have to change her. She is still very weak, preferring to sit on the couch or in our arms rather than crawl around the floor with her toys. And she frequently asks to be put to bed by sweetly pleading “nigh-nigh.” Though we’re pleased that she’s sleeping from 7:30pm to 9:30am, we’re anxious to have our energetic Elizabeth back.

Tomorrow, my dear mother is heading back to California. We are naturally anxious about whether we’ll be able to manage on our own. This week brings many doctors appointments as we try to put the pieces together and chart a course for Elizabeth’s recovery…which brings me to the new revelations of the last several weeks.

After a couple of weeks of unabashed emotionality about Elizabeth’s hospitalizations, (thanks to my admittedly unabashedly emotional wife J) I thought we’d start the week off with as more medically-oriented update. (be warned...it's long!)

First, we learned that Elizabeth's heart is having new problems. Specifically, over the last 6 months, the left side of her heart has stretched much larger than it should be. For the cardiologists among you, she has a dilated left ventricle, but still with normal wall thickness and ejection fraction. The cause for this new finding is uncertain. It could simply be the result of her new anemia and worsening fluid retention. If so, there’s a chance it could reverse if we manage to reverse these other two problems. The more dire possibility is that her heart muscle has a genetic abnormality in its structure. We'd discard this explanation except that these genetic defects also cause generalized muscle weakness, something Elizabeth has had since birth. The doctors are starting to wonder if there might be a connection. At this point, there is no treatment needed for the heart problem, just close observation and monitoring.

Second, Elizabeth’s portal vein thrombosis is NOT improving like we’d thought. Based on recent imaging studies, it looked like Elizabeth's body had begun forming for venous shortcuts to get blood around the blocked area. Everyone was hopeful that these “collaterals” were becoming big enough and numerous enough to keep her abdominal blood pressure low. Recent events and tests overwhelmingly show that these collaterals are inadequate for the job.

When the blood pressure in the abdomen gets too high, several things happen. The blood tries to find a new way back to the heart by creating varices (dilated veins) in the esophagus, stomach and spleen. To get an estimate for how high her abdominal blood pressure is, the doctors put a camera through her mouth, down her esophagus and into her stomach (an endoscopy) to look at the varices. They found that her varices had worsened since her endoscopy one year ago, increasing from a Grade 3 to Grade 4 (5 is the worst). They also found evidence that they are under considerable pressure, with several showing “cherry red spots.” When these spots are seen, there is a high risk of rupturing in the next 6 months. Without meaning to be dramatic, these varices are ticking time-bombs. If one were to rupture, Elizabeth would begin vomiting blood. Without immediate, highly specialized medical care, she could potentially die from such a hemorrhage.

Another effect of high abdominal blood pressures is the accumulation of ascites (fluid inside the abdominal cavity surrounding the intestines). Elizabeth’s last week in the hospital occurred because she developed a large amount of this fluid, further indicating how high her abdominal blood pressure is.

A last important effect of high abdominal blood pressure is a secondary build-up of pressure in the abdominal lymphatic system. The lymphatic system is responsible for taking nutrients absorbed from the intestine back to the blood stream. If it is under pressure, the nutrients can’t be absorbed and are left in the intestine where they can contribute to diarrhea. Elizabeth’s persistent diarrhea suggested that this might be occurring. In confirmation, dilated lymphatic vessels were seen during her endoscopy. A biopsy was taken which will likely confirm this problem.

Needless to say, we are very concerned. The doctors are as well and are urging us to pursue “an aggressive conservative” approach. A “conservative conservative” approach would involve starting a blood pressure lowering medication in the hopes that it would lower her abdominal blood pressure enough to decrease her risk of variceal rupture. An “aggressive aggressive” approach would involve taking her the liver surgeon and having shunt procedure or liver transplant performed despite the risks incurred by her young age and small size. The “aggressive conservative” approach involves two interventions. First, blood pressure lowering medications would be started to try and lower her abdominal blood pressures. Second, endoscopy would be performed every 3-4 months to monitor the varices. If a varix appeared ready to rupture, the gastroenterologist would inject it with alcohol to make it scar down instead. This type of a procedure sounds risky, and it is. Because Elizabeth’s esophagus is just slightly bigger than the camera tube they use, there’s a chance her esophagus could be ruptured. Additionally, with each alcohol injection, there’s a decent chance of causing the varix to rupture instead of scar down. And lastly, closing off the collateral flow that occurs through these varices can have unintended consequences. Primarily, it risks making her ascites worse or causing an “encephalopathy.” An “encephalopathy” is a condition in which the function of the brain is impaired. In this case, toxins the liver usually removes would build-up in the blood stream and begin affecting the brain’s function. Because Elizabeth’s brain is still developing, the damage could be permanent. If scarring down the varices in a sequential fashion increased her ascites or caused encephalopathy, we’d quickly be forced to try the shunting or transplant option.


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Whew! That’s a lot of information to process. If you stuck with us through the whole thing, you deserve an honorary doctorate…at least in Elizabethology. If you skipped down to the double-spaced new paragraph hoping the details had ended, that’s OK too. Here’s the wrap-up:

The events of this last month have reminded us how tenuous Elizabeth’s health is. We’ll be in touch after our round of doctors appointments this week. We really appreciate your prayers. It’s very clear to us that without the constant prayer covering she’s been getting, she may not have made it this far.

Goodnight,
Matt (and the girls)


Tea Parties with Grandma are an essential part of our daily routine now and will be very much missed when she leaves tomorrow! Though we have a little in-house debate about whether the tea pouring out sounds like: "shhhh" or "glub glub glub"...So far Grandma's voting for "glub glub" (in solidarity with her beloved son) and Elizabeth is taking my side and saying "shhh". Time will tell...

 

Her first Wagee ride since coming home. She loves her new wagon! Thanks Reza and Luisa!

 

 

Playground Love

 

Successful Endoscopy, Home at last

We just wanted to let you know Elizabeth's procedure went smoothly. It was actually quite brief, but they were able to get all the information they needed: pictures of her verices and 2 biopsies of her intestines. Matt will send out an update with more of the nitty gritty tomorrow...we're exhausted right now! But the short story is: We won't have word back about the biopsies until Wednesday or Thursday of next week, but the surgeon was able to give us his "quick take". They saw what they expected to see: verices that are concerning, under a lot of pressure and need to be addressed. The plan is to bring a bunch of folks (her GI, Liver specialist, Interventional Radiologist, and Cardiologist & Matt) together next week and have a pow-wow about how to plan for the near future.

We're glad to be home, and in a surprise answer to prayer, Elizabeth was completely peaceful during the transition home! I actually think the extra two days in the hospital got her over the hump and she began to realize there are some things that don't hurt, and she doesn't need to be afraid of. What a blessing. Thanks for all your thoughts and prayers. Goodnight.

One last goodbye kiss for her constant companion over the last few weeks...

 

And one last trip to the "toy room"

 

Another day, another beautiful view

Waiting, Waiting, Waiting....That's what we're doing today. Elizabeth was scheduled for her endoscopy at noon, then one, then eleven, and now three o'clock. That's fine, since she'll still get her nap in (PRECIOUS these days), but that also means she's been unable to eat anything (officially "NPO") since 5am, and I know she's hungry (read: crabby). We're in the home stretch though now, so only a few hours to go and hopefully, she'll sleep until she gets taken down. It's anybody's guess whether we'll go home today, or tomorrow or this weekend. We'll see what the endoscopy shows. Thanks for your prayers for all of us. Here are a few pictures.

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We've spent a lot of time looking out this window. We're looking at Forest Park, the "Central Park" of St. Louis. In the distance is downtown Clayton (for those of you Bay Area folks, it's kinda like downtown Palo Alto). Our neighborhood isn't visible from this window, as we are looking directly west, and our house is directly south of the hospital. Last night there was a thunder storm, complete with lots of lightening and rain. Today, the foggy/misty weather that you see here (from yesterday) has turned, in favor of blue skies, warm wind and billowy clouds. We can't wait to get out of this room and spend a little more time in the outdoors.

 

Elizabeth spends her down time between feeds, naps and vital checks reading books, going for rides in her Wagee, playing in the Play Room (she calls it the "toy room") here on the 8th floor, and generally delighting anyone who walks in the room, or passes by her in the hallway. Her spirits have definitely settled in the past few days. Thanks for praying about that. She's more content and has allowed herself to enjoy playing with some toys (mostly loving her new set of veggies and fruit that you can actually cut up, thanks to velcro!). She even offers the nurse her the appropriate body part for vital checks: leg for blood pressure, finger for oxygen saturation and armpit for her temperature. She's growing up!

 

Today's Pictures

Elizabeth trying out her new orthodics

 

A self portrait...she's saying, "cheese!"

 

Elizabeth practicing standing in her new orthodics and shoes. Believe it or not, her tummy is smaller than it used to be, but with all the fluid being pushed out of her, she's lost her little bum! In this pic, she's telling us & signining that Ernie has "hair!"

 

Steady Progress, Still in the Hospital

Hi Everyone,
We're happy to report that the "aggressively conservative" plan is working! Elizabeth has lost between 300 & 400 grams two days in a row now and has the shrinking girth to prove it. She's lost close to 4 cm. around her belly and even looks much more fluid balanced overall (as opposed to distended in the middle and really skinny everywhere else). These are all good numbers.

In consultation with our GI, we've agreed that it's best to keep her "in house" through Thursday, when he will be able to do the endoscopy himself to look at her verices and biopsy her intestines. While it means a few more days in the hospital, it also means avoiding the stressful transition home and back again for a procedure, and it means we can keep her IV in and don't have to "stick" her again. She's already in the "hospital zone," and while she's not thrilled, she's created a psychological space for herself, so she's coping really well. To go home and come back so soon is just too stressful for her. This will also give us a chance to watch her closely for a few more days and ensure that her fluid balance remains stable. Grandma Harms can stay until Monday, so if all works out, she can help us with the transition home perhaps on Friday.

We'd appreciate your prayers for a few things in the days to come:
~Elizabeth's stability (emotional, psychological). Grandma's presence here really helps that, but it also means she is resistant to almost everyone else, including Matt & I. Maybe we've held her for one to many procedures, or perhaps it's just that Grandma's 'untainted' by her yucky feelings about the hospital, but it's hard for us to walk in to see her only to be greeted by, "Buh bye! All Done, GRAAA-MAAAAA!" We love that they're so attached, but struggle with how exactly to respond without feeling like she's never going to love us again! (which of course we know isn't true, but hey...we're vulnerable too!)
~Mommy & Daddy's stability! (see above) We're both exhausted and fighting colds, Matt's board exams are looming and in the middle of all the stress (let's face it, he's basically doing a Pediatric GI fellowship now too!) he's struggling to find time to study and study effectively. Please pray for space and time and mental rest and effective/multiplied study time for him.
~Elizabeth's overall health. I'll be honest. When we come into the hospital, we live with the nagging feeling that we're just waiting for another shoe to drop. Elizabeth has provided us with so many experiences of the simple thing deteriorating into something amazingly complex and even life-threatening. We aren't fatalistic or superstitious, but we do walk with a degree of pragmatism and struggle not to become fearful. In the process of getting an echo during this hospitalization, we've discovered another possible problem with her heart. We've been in contact with our cardiologist from UCSF and now she's in contact with our new cardiologist, so things are being looked at by some very astute minds, but we're weary of the thought of yet another problem for our sweet one. Please pray for Elizabeth's health, wholeness and if you have the faith for it...complete healing!

Thanks so much for your care for our family.

PS - Some of you have asked about how you can help us right now. A friend here has set up a website to coordinate people who want to help with practical things.Click on this link and sign up if you want to bring a meal by the hospital, or home, or help in some other way: Helping Hands Website We're so grateful for the support of everyone...near and far. We love your emails, voice mails, cards and meals. You are truly making it possible for us to keep going these days!

Happy Birthday Eliza-bug!

For the first time in almost a week...we think we're making progress! This morning we met with the GI that is on call this weekend, and boy, what a difference a Dr. can make. He's already been in contact with our regular GI about her case, and he was humble, thoughtful, responsive and obviously really thinking about the "big picture" that is Elizabeth Joy. He had a lot to offer and over about 45 minutes walked us through his thoughts on her short and long term management. He is unwilling to accept her ascities (extra abdominal fluid) and diarrhea as her new baseline...and suggested that we take an "aggressively conservative" approach to getting her "fixed" in the short term, as well as positioning us to manage her clot, the resulting portal hypertension, and GI issues over the long term. All we can say is, "Wow."

So as of today, WE HAVE A PLAN! Over the next 24 hours, they're giving her 3 "aggressive" doses of Albumen and Lasix in order to draw the fluid out of her abdomen and send it to her diaper. :) The first treatment worked - she pee'd almost 1/2 a liter and her abdomen shrank by almost a centimeter. We'll watch her weight and girth for the next day or two and then make some more decisions, including when to "scope her" (give her an endoscopy to biopsy her intestines and take a look at her vericies...all to hopefully give us some idea of the cause of her diarrhea as well as to allow us to plan for the possibility of a shunt...once again on the table). This endoscopy will happen at some point, but if she's responding well to the diuretics and much of her fluid disappears, we can do it while she's "in house" (still in the hospital). We are praising God for giving us the grace and strength to hold on and hold out until Dr. Sheppard came onto the scene. It was a wonderful birthday present, aside from the fact that this PLAN included giving Elizabeth an IV again.

In honor of the GI bug that started this whole thing, we had a little birthday for our "Elizabug" today. Last year you may remember, we threatened to walk away AMA with Elizabeth if she was in the hospital on her Birthday. This year, we didn't have a choice. BUT, despite our circumstances, today turned out to be quite a pleasant one. Elizabeth delighted the entire wing by saying "one, two" when asked how old she was. Our nurses labored all night to make a sign for her door, and our roommate graciously moved to isolation so we could have the entire room to ourselves for the day (seriously, she didn't have a choice and we hope she gets well soon, but we were thankful for the extra space!) We enjoyed some cupcakes at 4:00pm in honor of the hour of her birth, and later got to skype with Grandpa Harms to wish HIM a happy birthday too! We were so thankful that Grandma Harms could be with us, as it made the whole day better for ALL of us. Thanks for your well wishes, cards, emails and gifts. We all feel so loved.

A Family Portrait. At this moment two years ago, I was definitely not standing up and smiling!


"I like the song, but I'm not too sure what to do with the fire or the food."


Proof that she actually ate a piece of Grandma's cupcake


Enjoying one of her gifts: a book about the rainbow...her current favorite subject. (well, second to the ABCs of course)


Skyping with Grandpa Harms

An Elizabug Slideshow

New Room, More of the same...

The highlight of yesterday was when Matt arranged for us to move from our tiny little "curtain cubicle" in 28A to the BIG spacious space in 34B. Elizabeth got an Echo to rule out the possibility that heart failure may be contributing to her sudden fluid retention. Everything came back clear from that standpoint. She has yet to spike a fever, so she doesn't have a peritonitis either (bacterial infection in the fluid). She also doesn't have any IVs, and doesn't need daily labs (blood draws) at this point, so she's much more comfortable than she was a week ago.

As far as figuring out what's wrong and fixing it, we're now on the slow path of balancing her nutrition, fluid intake and diuretic regimen so that we can get her back to her "baseline." (the medical-ese for how she is normally, when she's not sick) We're now trying to figure out if she has a new baseline, or if we can expect for her to go home and eventually return to her old self...This would be our preference. We had a good thing going until she got that bug!

We're here for at least another 48 hours, and beyond that, we don't know. Elizabeth is enduring the hospital thanks to frequent wagon rides, videos, books and toys, as well as frequent & distractionary visitors from church, my MOPS group and Matt's work. We are being so well taken care of. We're especially grateful for to Matt's colleague's family (the Weihls) who have gone above and beyond to set up a system so we don't have to manage anything, but are able to receive meals, and company at the hospital and help at the house. What a blessing.

Matt and I are hanging in there too. Matt's mom is flying in today, and as we like to say, "the cavalry is arriving!!" She's the master of distraction and will be such a big help in keeping Elizabeth entertained in the hospital and beyond.

My muscle strain is still painful but manageable, especially with all the helpers who can lift Elizabeth and help pull her on her "wagee" rides. Because of all the invasion of her comfort zone this last month, she's afraid of almost anyone who isn't mommy or daddy right now, so we'd appreciate your prayers for her little spirit. It's difficult for me to accept help with her if she's stressed out by strangers. It will be good for her to see Grandma.

Here are a few pictures of Elizabug from the last few days:

Happy Birthday Daddy!!



Enjoying a Wagee ride in the roof-top garden. It's suddenly turned cold in Saint Louis, and cold means...fall...and Baby Girl Harms 2 is coming soon! Eeek!

Third time's the charm??

We need to ask for your prayers once again for our little one. No sooner had I posted our "coming home" email to our blog, then we started noticing Elizabeth's belly was increasingly distended and her breathing more labored. Her symptoms worsened over the last 24 hours and after talking with our GI, Elizabeth is back in the hospital tonight. These symptoms match the ones that put her in the hospital last August. These symptoms eventually turned out to be a bacterial peritonitis (an infection in the fluid collection in her belly...as a result of the clot they later discovered). We're not taking any chances, and we're hoping that after 3 admissions in as many weeks, the Team is beginning to see that any tinkering with Elizabeth's diet, fluid intake or medications has significant results and needs to be weighed and watched before someone can "sign off" on her. She hasn't even recovered emotionally & psychologically from her recent hospital stay. She's still afraid of everything, and exhibiting some stress behaviors that we only see when she's in the hospital. It breaks our hearts to bring her back into that environment, regardless of how nice everyone tries to be.

The timing of this obviously makes travel to CA this weekend seem an impossibility. I've been flat on my back and hobbling to and from Elizabeth's follow up appointments with the help of a family friend who has carried Elizabeth and done all the lifting. My strain is still painful and now is a really bad time to be doing the "hospital routine". But, it's where we are and what we have to do right now, so please pray for grace and strength and obviously for healing for ALL of us. Matt's been amazing. His 33rd birthday is tomorrow...actually today, Oct. 10. Elizabeth will turn two on Sunday the 14th, yet we can't even think that far.

We covet your prayers and will keep you posted.

Home

We're home. We're exhausted, but grateful to be ALL sleeping in our own beds tonight. In a turn of events (no doubt God ordained) Elizabeth's IV broke yesterday afternoon. Since she was doing well on the new food, and puffing up from all the fluids she was no longer losing, we agreed to pull the IV and wait to place a new one until they drew her morning labs today. This morning, they again decided to hold off on the IV, and when her labs came back looking good, and she continued to tolerate her food well, they gave us the green light to take her home. We have pager numbers for our pediatrician and GI and have the invitation to page them if we notice signs of dehydration again (by now, we're getting good at spotting it!), and follow up appointments for labs and check ups over the next few days, so we feel comfortable bringing her home to recover.

We still can't make the decision about whether to travel to CA this coming weekend. We'll just have to wait and see how she does over the next few days.

Please pray for:
~Rapid healing for Elizabeth & grace for her and us as we transition home...every time she's in the hospital, her life gets turned upside down and we slowly need to reorient her to "normal".
~Wisdom about the California decision. We don't want to put her through too much too soon, but we're also aware that this is an important weekend in the lives of BOTH our families and we'd love to be with them.
~Sara's health. In the transition home, she strained an abdominal muscle and can hardly walk or lift anything. Obviously this is poor timing. Elizabeth is so weak from her hospitalization and can't walk or even crawl much, and we have to give her tube feeds every 3 hours around-the-clock, so she is especially "high maintenance" right now. We simply need a miracle.

Thank you for continuing to encourage and pray and stand beside us throughout this journey. We pray YOU won't get weary either!!
Bless you for your faithfulness to us.

Friday, still in Room 8W34B

We didn't make it home today. Yesterday, when Elizabeth seemed stable, (and having learned from our recent experience of going home, only to be readmitted) we asked the GI team to give her a "practice run" at her home regimen to determine if she'd be able to keep her fluid balance up while receiving all her calories and fluids via her g-tube before sending her home. So we tried it: We stopped her IV fluids, and fed her only pediasure via her g-tube. 16 diapers and two fevers later it was apparent by this morning that she was again dehydrated, as well as "acidodic" (her diarrhea was throwing off her sodium & fluid balance) and she wasn't absorbing her nutrition. Her poor little body simply isn't able to stay ahead. Her GI tract is clearly in bad shape and she's not ready for home yet. Ironically, this is actually an answer to prayer....at least the revelation of her need to stay for a few more days is an answer to prayer. After going through this a few times now, Matt and I have begun to pray: "God, we want her home, don't let her stay in the hospital one more day than necessary, but if there is anything harmful to her lurking under the surface that has yet to be discovered or addressed, then don't let her come home too soon." It's better that we discover this while we still have IV access, than to take her home and bring her back yet again.

Today she was back on IV fluids and tomorrow we'll introduce a formula that might be easier to digest. If that works, then we'll try again to discontinue the IV fluids and maybe be home by next week...though we've stopped "counting chickens" altogether these days. We're just taking it one day at a time. Matt's sleeping over tonight and Mom and I get to sleep at home. We did decide to delay my mom's flight home in the hopes that she could help us with the transition from the hospital...now we're just grateful for the extra set of hands for a few more days.

Thank you for your continued prayers. We're not falling off the cliff into the depths of despair, so they must be working. Goodnight.

Here are a few pictures:

Spending some time "Aah-shide" (outside) with Granna, on the "whee". We have access to a beautiful rooftop garden here that offers a nice place to take a short walk and relax a bit.


Baths in bed were much easier when Elizabeth didn't have any hair! Here she's protesting a scalp massage that would cost lots of mulah at a fancy salon. At least I didn't make her sit under the dryer!

Oct 3rd

We're still in the hospital. Elizabeth is doing better with the help of some IV fluids. All of her labs and tests have come back negative, which means so far we don't think there's an underlying reason for her "mal-absorption", continued diarrhea and dehydration. Basically, her gut just hasn't been able to recover and after 2 bugs in two weeks, her body simply doesn't have the reserve to fight. Soooo...it's a wait and see game. Continue with the IV fluids, suspend the diuretics, slowly introduce nutrition in the form of lactose free Pediasure, and hope that her body begins to get well and "normalize". We're thankful that there doesn't seem to be an underlying cause like Cystic Fibrosis, but that also reduces our treatment options. Granna's set to leave on Friday I think we're all in denial about that. We're just thinking about today.

We'd appreciate your prayers for:
*Elizabeth's speedy recovery and complete healing!
*Grace, encouragement and strength for Matt as he juggles work and tries to compartmentalize studying for Board Exams (Nov. 6), working, thoughts & concerns about his dad's recovery from surgery (going well overall) and caring for his wife and daughter.
*The same for Granna and I as we trade shifts at the hospital, and wisdom about whether my mom should extend her trip a few days.
*Wisdom about whether we should even consider taking Elizabeth to California next weekend for the Memorial Family Reunion for my Grandpa.
*Hope & Faith for all of us.

We're so thankful for you! Here are a few pics from yesterday.

Elizabeth loves her new Elmo Remote Control...is there ANYTHING that red monster doesn't sell??


Trying out her stethoscope. The good news is, Elizabeth is beginning to be more comfortable with her vital checks (every 4 hours while she's in the hospital). Previously, the contextual clues of a nurse checking her weight, blood pressure, heart rate and temperature sent her into hysterics, because it usually preceded an IV, blood draw or hospitalization. As she's getting older, & we've incorporated songs and done some play therapy with the medical tools, she being able to remember that there are some procedures that don't hurt. That's a relief for all of us.


I'm sure she's in violation of the National Academy of Pediatrics standards for appropriate distance for TV viewing...oh wait, she isn't even supposed to be watching TV at her age!! Well, one more thing she'll need therapy for someday....at least for now, she's in Signing Times Heaven. ;)

Back in the Hospital

I think she heard that Granna was going home this week. Maybe she was acting in solidarity with her Grandpa Harms, in the hospital after having a cancerous tumor removed. Maybe she just missed watching her silly songs videos all day...At any rate, Elizabeth is back in the hospital. We were admitted yesterday after 3 days of weight loss and severe dehydration. She fell apart as we were at the pediatrician's office and if I had any question about whether we were over-reacting, it was erased when my normally cheerful little girl was inconsolable for 2 straight hours. With a few boluses of IV fluids, she's doing better today, but we'll be in the hospital for a while as they try to figure out the cause of her continuing diarrhea and vomiting. We'd appreciate your prayers and will keep you posted.