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

Pictures from the last few weeks...

Granna & Papa came to town to help us welcome Hannah and we had a wonderful time. The girls kept them entertained and we all caught up on hugs and kisses. After almost three weeks, we were so sad to say "Goodbye". Click on the photo below to see the album of photos from Papa's fancy camera.

Hannah Mae Harms is Here!

Born: 5/14/10 at 10:56pm
7lbs 14oz
21inches
beautiful.

Happy Mother's Day

While we're still awaiting Baby Girl's arrival, I had a lovely Mother's Day and felt full to the brim with all the love and affection from my family. Matt's yummy crepes for breakfast, an enjoyable afternoon walk with my sweet friend Abby, and dinner out (read: no clean-up) made for a perfect day. I'm so thankful to be a mom and truly grateful for how I've changed as a result of the two little people God has entrusted to me. While the journey hasn't always been easy or painless, in the process of becoming the mom I want to be (still not there yet!), I know I lean on and love God more, and experience more of His grace and faithfulness on a daily basis. Praise God from whom all blessings flow.

"Wohoo!!"

I don't know if those words will be in the official report, but that's basically how we feel after a really good news from the surgeons this morning. On a side note, in addition to her Endoscopy, we were able to schedule Elizabeth to have her ENT clean out and assess her left ear (where her hearing loss was classified as "moderately severe") while she was under general anesthesia. St. Louis Children's is really good about doubling and tripling up on procedures to save kids multiple intubations and traumatic hospital experiences...and it's much more convenient for us too.

Since the ENT was able to get a good look while Elizabeth was in Lala land, she discovered the extent of a fungal infection in Elizabeth's outer ear (which we've been treating for the past few weeks) and was able to thoroughly clean it out, and also discovered her tube had come out, and the eardrum had sealed over trapping a lot of sterile mucous...so it's no wonder our little bunny couldn't hear!! So, she's got a brand spanking new tube in her left ear and both ears are spic and span, and in two weeks we will re-test her hearing and are expecting better results! So please continue to pray for complete healing for E's ears...that prayer request hasn't been officially answered yet! :)

In the other good news of the morning, the GI surgeon thought her varices looked good (grade 2 out of 4, 4 being badly at risk of rupturing) and this time didn't feel like he needed to do any sclarotherapy (the process of sealing off veins that will likely rupture soon). And he thought we might be able to wait for 3 months before looking again!

So it's all good news from us today! Elizabeth did great all morning, she was brave and strong and cheerful and as soon as her anesthesia started to wear off she promptly began negotiating for her favorite treats....animal crackers, a Belle sticker and a little Einstein's video...which I promptly supplied.

Thanks for your prayers and emails!

Endoscopy - Round 3

In the hub-bub of getting ready for Baby Girl #3 and preparing for a visit from my sweet friend, (My Abby from California is here for 4 days!!) I forgot to ask for prayers for Elizabeth's endoscopy today. It's easy for me to forget that there's a risk each time she goes under general anesthesia and each time they poke around near those varices, but I was up early this morning with sweet Ruby and thought I'd send out a quick request. We've got to check in at 6:15, so I have to go get her things ready, but please pray for a successful surgery (she's scheduled at 7:30am) AND that I wouldn't go into labor today. :) That would just be too complicated. Ruby will play at Sophie's house and Matt's got a full day at work, so we're all scattered, but firmly in His grip.
We'll let you know how it goes. There's a chance if things look good, that this could be the last one until the fall, we'll see...
Love,
Sara, Matt and the girls

Wanna help?

For a number of years now I've wanted to post about the things friends have said or done which have been particularly helpful to us as on our journey through Elizabeth's diagnosis. (And, to be honest, the things I wish I could have asked for, or expressed, but couldn't) This series of posts says everything I would want to communicate.

How to help a grieving friend

Thanks Kendra for posting this link!

Overheard

After toppling to the floor in her efforts to do gymnastics on Mommy's ever shrinking lap:

Daddy: What happened?

Ruby (in tears): I bonked my head!

Daddy: Why?

Ruby (with fresh sobs): Because Mommy's not a jungle gym!