Home & Healthy!

Before time gets away, just a quick update: We're home and miracle of miracles, our whole little clan managed to get to California and back and remain healthy!! We're all a little tired (read: exhausted!) but full to the brim with wonderful memories of rich family time. When we get settled, I'll put a more thorough update on our blog, but for now, THANK YOU for your prayers for our family, our travels and our health.
We were delighted to have a photographer come to capture some family moments and she's posted a few highlights on her blog. Feel free to stop by: Harms Family Photos
Thanks for sending all the Christmas cards, pictures and family updates. We've loved them!
Happy New Year!
Love,
Sara and the crew

Merry Christmas from the Harms Family!

As the weather drops in St. Louis, and rain pummels California, we're still hoping that tomorrow we'll be on a plane for the Harms Family Christmas in the Bay Area. We still have 3 cousins we haven't met, so we can't wait to spend 4 wonderful days together. The great news is, after nearly 2 months of constant illness, (she attended preschool 2 days in October, 1 day in November, then missed the first week of December!)  Elizabeth is--at this very moment--well. Last week, she managed to get another ear infection, but we got that treated quickly and are praying the whole family stays healthy through our trip (if you recall, with one exception, every trip to California over the last 3 years has been marked by a visit to the ER or urgent care for Elizabug and we want that trend to stop!). If we come to mind, would you pray for traveling mercies and wellness for the whole Harms Clan? That would be a miracle and we would so appreciate that.

We have so enjoyed receiving Christmas cards from many of you, and while we couldn't quite pull it together to send one out this year, we do hope your Christmas is filled with shalom. He came so that we might be at peace with God. May it be so for you.

Much love,
Matt, Sara, Elizabeth, Ruby & Hannah Mae

Granna's Help

It's serious catch-up time. I promised to post the result of the
endoscopies....it went well. Elizabeth only needed one vein sclarosed,
and Hannah's scope looked good, all her anatomy is normal and her
esopogus showed minor esophogitis, the reason for her bloody vomit.
Elizabeth will continue to get regular scopes and Hannah should
outgrow her hernia and reflux over time. So it's good news on all
fronts. They both recovered beautifully and came home the same
afternoon.

We said goodbye to my mom and niece. We were so thankful for their
visit. Rachel was a fantastic playmate and Granna was super
helpful...and even managed to get matt and I TWO date nights! As
always we were sad to see them go, but we didn't have time to think
about it because we promptly all came down with the stomach flu!
Needless to say, you wouldn't have wanted to read those updates. :)

Double the fun!

We've been at home for 4 days now and Elizabeth seems to be slowly getting her strength back. She's still not fully recovered, but tomorrow at 6:30am, we'll show up at the hospital for an endoscopy to see how her the varicose veins in her esophogus are doing. This time though, we'll also be bringing Hannah Mae, who will ALSO be getting an endoscopy as a result of her severe reflux, sliding hiatal hernia and persistant blood in her vomits. Yuck! Thank God my mom is in town and can keep Ruby so both matt and I can be at our girls' bedsides. It's a little weird to be taking them both in, but we're so thankful that we were able to coordinate things so they could be done back to back! Elizabeth will certainly help her little sister to be brave. As always, we'd really appreciate your prayers for safety. We're old hat at Elizabeth getting intubated to undergo the procedure, but putting Hannah through all those pokes, and a sedated procedure reminds us that there truly are risks and we need God's protection for both our little angels. Thanks in advance! We'll let you know how it goes.

home

In a whirlwind morning we were discharged 8 hours earlier than expected and now we're home! I'll give a more thorough update later. Thanks so much for your prayers!

Another Busy Day

Between exploring the rooftop garden and the playroom, Elizabeth got lots of exercise today and had plenty of fun. Add learning new signs from her Signing Times Birthday DVD, painting a princess picture and taking a bath to that list and it was a full day. And this came after a busy night!

She lost her IV in the wee hours of the morning, (it came out and leaked into her bed) so after a bed/wardrobe change at 5am, she got poked 4 times before they finally got her new IV in! Fortunately, Grandma is a good stand-in for Mommy in the comfort department, and Elizabeth was strong and brave and quickly fell back to sleep. Please join us in praying that this IV stays in until discharge!

Grandma flies back to California tomorrow and then Granna arrives on Wednesday evening, hopefully just after we get discharged! I think we can see the light at the end of the tunnel! Goodnight!

~Sara

Pizza Party on 12!

We ordered in pizza...can you believe in all our stays at the hospital we've never ordered in pizza? Clearly, the girls loved it and Mom & Dad enjoyed the easy cleanup!

Five days down

Today was a great day. Elizabeth had a great night and is finally starting to get some sleep. We had a family morning in her room and got to play Candyland together for a bit. (By "play" I mean, Elizabeth holding all the little men and Ruby holding all the cards and Grandma and Daddy or mommy trying to "encourage" them to figure out whose turn was next) Then we had a mommy-daughter day and I got to take a long walk with Elizabeth to the playroom and the outdoor garden. I didn't have my camera, so here are a few pics from my phone. Her birthday present from Children's Hospital was a "Dancing Singing June Doll" and she loved taking her vitals, carrying her around everywhere and introducing her to anyone who happened to cross her path, saying "What's your name? This is June!" 

Unfortunately, this afternoon I caught her IV infiltrating (leaking out of the vein into the surrounding tissue, causing her elbow to swell) so we had to take out her IV, but the upside to that was we had 3 wonderful hours free of her IV pole and she was amazingly calm when they placed the new one in the same spot on the other arm. We finished the day with a pizza party (I'll post those pics on our blog) and now everyone is tucked in for the night.

We're continuing to experience God's mercies and so appreciate your prayers.

Please continue to pray for:
~Elizabeth to remain fever-free (and our whole family to remain healthy) so she can return home as soon as possible.
~Matt's patient load to continue to be light, so he can complete his work and remain available if Elizabeth needs him
~Ruby & Hannah to be flexible with the daily changes in schedule and caregivers
~Great rest for all of us!

No News is Good News

Grandma is sleeping at the hospital with Elizabug tonight giving Matt and I some time with the little girls and a chance to get a good night's sleep. We got a standing order for benadryl to hopefully help with her "itchies" which we think is just her system being overloaded and we're hopeful it might aid in helping her sleep better too! Thanks for your continued prayers. Goodnight!

A Plan!

I just got off the phone with Matt and the team agrees that we should tentatively plan for a 7 day course of IV antibiotics, so that puts us at a Wednesday afternoon discharge...Yay for a tentative plan!!

Elizabeth on the mend...but still not sleeping well!

Today was a hectic but GOOD day. Elizabeth tried to make up for her late night by sleeping in-between interruptions (vital checks every 4 hours, IV antibiotics 2 or 3 times, blood draw at 6am) until 8:30 this morning. Her appetite is slowly coming back and she's getting stronger and steadier on her feet. She's gone for 36 hours without a fever so we think we've gotten the upper hand on whatever was ailing her and now we just need to make some decisions about how long she needs to be treated with IV antibiotics in light of the fact that her cultures haven't grown anything. No one seems confident that we should stop treatment and go home, but we'll see how things go over the weekend. At this point, we're bracing ourselves for the full 10-day course of antibiotics and we'll be delighted if we get surprised with an early discharge.

Grandma arrived and immediately her presence was a blessing since the little girls got some TLC and good naps at home and thanks to a sweet visit from our friend & babysitter, I got to go home and take a quick nap! I'm home tonight with Grandma and the girls to get some much needed sleep and Matt's at the hospital with Elizabeth. She's still awake and tossing and turning...pray for her little body and mind to rest!

Thank you for your prayers, your encouraging emails, phone calls and meals! We feel loved on every side and it's remarkable to once again be faced with such a complicated crisis and honestly feel like we're doing well! Matt continues to be able to work because by the grace of God he only has a few patients on service. This RARELY happens for him. Usually when he goes on service he has "the most patients they've had in a month" or some other craziness. But after hearing how things went today I was remembering 4 years ago when we were admitted to UCSF for  one of Elizabeth's long stays and Matt was able to continue his residency program AND be fully present in the hospital with us because he had 1 patient on the wards the entire month! That was unheard of. But it was a beautiful picture then and now of how many times God hasn't taken us away from the crisis but has made a path (think red sea) through seemingly impossible circumstances. Personally, I think He's enjoying showing off for us. :) He's good. Thanks for being part of His goodness to us.

A dozen times a day I log a little tid-bit that I want to pass along to encourage you how well God is taking care of us in answer to your prayers. I would love more time to write eloquently of his faithfulness, describe the nuances of his kindnesses to us. But tonight, I only have energy for a list:

~Our sweet nurse "doesn't believe in waking sleeping children"...so Elizabeth got much needed rest.
~A sweet friend got some groceries for me so I could sleep instead this afternoon.
~Elizabeth is perky, compliant, cheerful, flexible and simply the best patient a hospital could hope for. She makes hospital stays EASY (except for the insomnia thing!) :)
~Delicious Harvest Bisque with grilled cheese on french bread for dinner thanks to another foodie friend.
~Coffee and visitors at just the right time yesterday. And a friend to distract Elizabeth so I could talk with yet another team of doctors who wanted "the whole story".
~A Grandpa who is willing to spend his 60th birthday alone and send his bride of 39 years on a plane to be with his ailing granddaughter.
~Friends who care for, love and enjoy our daughters so I can be at peace in the hospital with Elizabeth.
~Matt works AT the hospital where Elizabeth is admitted. He RARELY has to take a vacation day and is always only a phone call and a few steps away.
~What appeared to be a really sad development a month ago--Hannah needed to be weaned and only takes formula from a bottle--has become a tremendous blessing: She's thriving and we have the flexibility to leave her with Grandma or a friend when I can't keep her with me at the hospital.
~lastly for tonight...a sweet video of Elizabeth taken at the height of her fevers on Wednesday night...http://www.youtube.com/watch?v=vzLqt8RYvAI

Goodnight sweet friends,
Love,
Sara

Another day older...

Elizabeth spent her 5th birthday getting much better. It appears the antibiotics have finally started working. As you'll see below, she's feeling better and starting to act more like herself. Folks from around the hospital and around town stopped by or sent gifts and Elizabeth felt properly celebrated despite her location.

It's now almost 11pm and Sara just called me to say that Elizabeth still hasn't fallen asleep. Typically, just as she's starting to get better, Elizabeth gets a more than a little maniac and seems driven to catch up on all the talking and playing she missed while really sick. Pray that she'll give Sara some peace and quiet tonight...

The photos attached take you from pre-sick, to really sick, to getting better, to the events of the Birthday, to her cupcake inspired insomnia:

Happy Birthday Daddy! (Sunday 10/10)

Sweet Elizabeth in her "comfort zone"

Birthday Breakfast: Chocolate Chip Cookie!

At mommy's recommendation, Elizabeth tried Chocolate Milk for the first time in honor of her birthday....her response? "MMMMmmm tastes like.....quesadilla!"

For a girl who loves her quesadillas, that's a high compliment!

Princess Balloons from Ms. Megan!

Happy Birthday Princess Elizabeth!

Birthday's over, NOW WHAT??

Elizabeth Update

No news is pretty good news. Elizabeth spend the day with fevers to 104, but it looks like the broad range of antibiotics they are using are finally kicking in- our limp dishrag of a daughter has perked up a little in the last hour. We don't have confirmation that she had bacteria in her blood stream again, but that's what everyone is assuming based on her fever pattern and how sick she looked. We are extremely grateful that my mom is going to be able to fly out tomorrow and stay with us until Sara's mom arrives. Since we're anticipating at least 10 days in the hospital, they'll be a big help.

Tomorrow is Elizabeth's 5th birthday. She also spent her 2nd birthday at Children's, so she's no stranger to important days passing, but it seems sadder to us this time around. Pray that we'll have some creative idea for how to mark the day despite our circumstances.
Thanks to everyone for their prayers...more info when we have some.

Pray for Elizabeth

Matt took Elizabeth to the ER last night after a day of high fevers and no probable cause. Her white blood count was 15,000 so she's pretty sick, but we don't know fur sure if it's in her blood. We'll hopefully get those results today sometime. Neither of them got any sleep last night, so after an IEP meeting with Elizabeth's therapists this morning, I'll head to the hospital with Hannah in tow. Our friend Rachel is watching Ruby this afternoon. Matt's turned in a grant yesterday morning (praise the Lord) but yesterday started his two weeks of Attending duties so we're still working out logistics. Obviously we'd appreciate your prayers. Her fever is hovering around 104, so we need to know what we're dealing with so we can get her on the right medicines.

The Lord is my light and my salvation; Whom shall I fear?
The Lord is the defense of my life; Whom shall I dread?
I would have despaired unless I had believed that I would see the goodness of the Lord In the land of the living.
Wait for the Lord; Be strong and let your heart take courage; Yes, wait for the Lord.
Psalm 27: 1, 13 & 14

mine for the taking

The day is long
and all that I must do
too much for my small strength.
When at length
the day is through,
shall I find
I failed to tap
the Infinite Resources
forever open to the weak
who seek?
Shall I die
regretting
not getting?
Shall Joy
weep
for my sake
--who would not
take?

--Ruth Bell Graham

Happy First Day of Preschool!

Elizabeth's first day of preschool was a great success. Her teacher called me late in the afternoon to tell me how well she'd participated in all the class activities...walking in a line, standing in a circle, catching a ball and saying her name to introduce herself, clasping her hands in her lap to wait for her snack (Auntie Tawni, I think you taught her that one!) and walking up and down the stairs by herself. This is one of the main reasons we have her in preschool...the social experience is so helpful for her since she loves people, but has a hard time knowing intuitively how to interact. When the teacher called her name and I met her at the door to take her home, she said, "I had a fun time!" That's all I could ask for.

Here we go...

Tomorrow morning Elizabeth will head off to her first day of preschool. It's a big deal for any mom, I know. I've had a lump in my throat for days, months really. But I believe it's going to be a really good thing for her, and for our family, and for me. We're blessed to have a sweet little preschool at the church a block from our home so she'll get to spend 3 mornings a week there and while she's playing her heart out, she'll also work with two of her four therapists. It's been a big week of firsts for us, and my heart is literally bursting with all sorts of emotions. She started getting her growth hormone shots, lost her first tooth, we called poison control for the first time (for Ruby, so that's a different post altogether...she's fine), and yesterday, Elizabeth got stung by a bee! Apparently she got excited after having such luck with Hermie the caterpillar that she thought all bugs were friendly. It was a hard lesson.

So our little angel is growing up. Praise be to God. There were definitely seasons when we wondered if we'd see this day!

The Family Tree of Hoses

We saw a firetruck parked in front of our grocery store, (firefighters eat too I guess) so I thought Ruby would be totally excited to see one in real life! Apparently boys and girls are different. Ruby would not even look at this firetruck up close and was totally freaked out by the firefighter (in causal blue pants & shirt) until he asked her if she wanted to see the hoses. She cast her glance toward him and he said, "We have a baby hose, a mama hose, a daddy hose and a grandpa hose. Wanna see 'em?" Her eyes lit up and a grin spread across her face. She looked at me and said, "they have a BABY hose!?!" It was too cute. Though in the end, (and this will come to no surprise to her grandparents) her favorite one was the Grandpa Hose. She has a special place in her heart for her Grandpas.

Jimminy Chrysalis!

Would you believe, the fat green caterpillar (apparently it's an Antheraea polyphemus) we found on our sidewalk...our very own Hermie, decided to give us a nature study! Ruby came to me the morning after we adopted him and said, "mom, he's all gone!" I had visions of squished caterpillar guts on our basement floor, but when I picked up the jar, it was obvious Hermie had made a big chrysalis on the sweet potato vine in his jar. Matt thinks he went to "a happy place" to avoid any more manhandling, but I'm hopeful he'll come back to us as a winged creature someday soon. I'm off to google "how to raise a silk moth". Pretty exciting!

Elizabeth's First Pet

We found Hermie the Caterpillar on our front steps this morning. He's beautiful! Mommy got a little worried that he'd get squished on her couch, so we found a nice jar for him. Elizabeth sang to him all afternoon. We're hoping he'll survive all the "love."

Toothless Wonder

We've crossed a threshold. Elizabeth lost her first tooth this
evening! (In the interest of full disclosure, Matt yanked it out
(gently of course) since it was barely hanging on and the new ones
were already growing in behind it.) Elizabeth is ecstatic. She's got
the tooth ready for the tooth fairy and we've now got to decide what
kind of precedent said tooth fairy wants to set.

Apple Picking

We celebrated the holiday weekend with a "girls day" of apple picking at Eckerts Farm with our dear friend Amy. The girls loved picking and eating as many apples as they could until Mommy enforced the "you pick it, you eat it" rule. They also loved riding the tractor to go pick the apples, and were delighted with a passerby gave us their extra tickets so we were able to ride the giant swing. Thanks kind stranger!

Big Day for a Big Girl!

Today Elizabeth began growth hormone therapy. Six days a week for the next number of years (unless we choose to stop for health reasons) she'll get a shot once a day to help her grow. I was concerned that she might stress about it since she has been through so much hospital stuff, but she was a total rockstar! We read a book about a little girl with Turner Syndrome who gets growth hormone shots (Thanks Coley for sharing your story!) and then a visiting nurse trained me to mix up the medicine and give her the shots. Near the end of that session, Elizabeth said, "I want a shot like Coley!" So we let her choose a special stool, and pick which leg to get "stuck" in and then I gave her the shot, we counted to five and took out the needle! She looked up with a grin on her face and said, "That didn't hurt!"
Thank you Jesus.

And thank you Jesus for our sweet girl. I learn so much from being her mommy.

This picture was taken on Monday at her ENT apt. I have to take her in every week or two to get her ears cleaned out with a special tool....despite the smile you see here, it's NOT fun for her. But as usual she's a champ. I also had both Hannah and Ruby with us at this appointment, all squeezed in this tiny little room. Her Dr. had to lay her down and use this huge microscope to help them see into her ear, and she needed to be held down so they didn't puncture her eardrum while cleaning it. Poor thing! Unfortunately, Hannah started wailing and wanting to eat at the same time and I asked Ruby to pat her and instead she started giving her the bottle I had resting in the stroller! She said she was being a "good big sister". I couldn't agree more. Would it be wrong to ask her to take over the night time feedings??

Elizabeth Update

I keep waiting for a break in the action so I can send an update, but the action never stops around here and the news is piling up, so I'll just jump right in!

Elizabeth has a ton of appointments this month. We had 5 last week and we have 3 more this week, as well as a check up for Hannah. Here's the brief synopsis:

~After meeting with her Endocrinologist, we've agreed that now is an optimal time to begin treating Elizabeth with growth hormone shots. This will allow her to reach her fullest height potential before her growth plates close. We've gotten preliminary labs and a bone age scan, and are now waiting for insurance to approve the treatment.  We'll get trained on administering the injections later this month. Because Elizabeth has been a champ through all the procedures we've had to put her through, we're imagining that she'll get used to the shots quickly…but you never know when she might have reached her limit, so we'd appreciate your prayers for an easy transition for all of us.

~She's stable as far as GI is concerned, and we've got her next endoscopy scheduled for the end of September.

~ On Wednesday we made another attempt to get an accurate audiogram and were partially successful. Elizabeth and I had been practicing at home using chocolate candies to try to eliminate her false positives (she'd figured out that they wanted her to put the toy in the bin when she heard the "beep beep beep" so she'd just wait a sec and regardless of if she heard something, she'd put the toy in the bin...hoping to get the whole thing over with sooner!)   After assessing that she still had too much gunk in her left ear to get an accurate test, we went ahead and tried the right ear using our "chocolate candy game", and she did beautifully! So we finally have an accurate baseline for her right ear and the report is good! She has normal hearing in 3 out of 4 tested frequencies and is only mildly below normal on the 4th.

~Then today we visited ENT to continue working on getting her left ear cleared out. She still has a persistent fungal infection in her canal, but the good news is, it looks good...still "funky", but not any worse than a month ago. Because her ear looked good, and with a successful audiogram under our belts, we decided to try for the left ear and she did great! She gave an accurate test we were thrilled that the results were the same as for the right ear!! She has normal hearing except for 1 frequency! So between her two ears, her hearing is pretty close to normal!! Praise God!

~We'll see her dentist tomorrow and Cardiology on Wednesday and both of these are just check-ups, so we don't anticipate any big news from them. However, Elizabeth will get a dental cleaning, which is pretty traumatic for her, and an EKG, which as the last procedure in a LONG list of appointments, is also pretty stressful. So please pray for her state of mind and ability to know that these won't hurt her.

Finally, we saw our pediatrician on Friday and after some neuropsychiatric testing, he confirmed what we'd already suspected: Elizabeth meets diagnostic criteria for an "Autism Spectrum Disorder". She falls into the "high functioning" category that was previously called Aspergers.  We've suspected that her brain was processing the world differently, so frankly our reaction to the news is mixed. I'm relieved that the issues we see aren't "my fault" for lack of insight or instruction. This does, however, bring a bunch of new questions and issues to the forefront and we're struggling to process them in the middle of our chaotic lives. Would you join us in praying for wisdom and direction and lots of peace?

In other news, Hannah will be 2 months old on Wednesday and is doing great. While things are still pretty crazy, it has been a complete blessing to have her join our family. Matt leaves for a Neuromuscle conference in Naples, Italy on Thursday and will be gone for 9 days. That means the girls and I will be "winging it" at home, missing him terribly and surviving on quesadillas, grilled cheese & carrot sticks for a while. (that sounds like complete nutrition...doesn't it??) We'd appreciate your prayers for smooth travel for him and for a grace-filled week and a half for us. Please pray that Elizabeth remains healthy while Matt's gone (I'm NOT ready for a hospital stay!) and that I miraculously have joy, patience and energy even on little sleep.

One month old!

Pure sweetness.

Everything good comes from California...

That must be what our kids think, because every time they turn around these days, more love is arriving from California! This time it was Grandma and Grandpa Harms and they brought treats, as well as LOTS of love, hugs and attention. The girls ate it up and we thoroughly wore them out before sending them back home yesterday. Ours was the second stop on their "Grandbaby Tour" which began in Oregon to welcome our newest nephew, Gavin Elijah Harms who arrived only 8 days after Hannah. Now we settle into our new life as a family of 5...

Hannah's first 2 weeks!

We've had a busy few weeks...Hannah's doing great. She's a great baby (translation: doesn't do too much crying, and does lots of sleeping) and the girls are still over the moon for the newest little princess. This week we're enjoying a visit from Grandma and Grandpa Harms and trying to remain in denial about the fact that very soon we'll be doing this on our own! Eeek! Here are a few pictures of Hannah's first few days...

Getting ready for our first Dr. appointment ~ 3 days old

Our Little Peanut ~ 4 days old

First Bath ~ 6 days old

First Taste of Chocolate Cake ~ 1 week old

First Backyard Playdate with Elizabeth & Ruby

First smile ~ 12 days old