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!

Sifted Circumstances

"There is no circumstance, no trouble, no testing, that can ever touch me until, first of all, it has gone past God and past Christ, right through to me. If it has come that far, it has come with a great purpose, which I may not understand at the moment. But I refuse to become panicky, as I lift up my eyes to Him and accept it as coming from the throne of God for some great purpose of blessing to my own heart." -Alan Redpath

Changed

For a long time now I've been wanting to post a link to one of my favorite resources. The book is Changed By A Child: Companion notes for parents of a child with a disability. If you know someone who has recently received a diagnosis, I would encourage you to send this book to them....it has been a tremendous gift to me.  I regularly come across an entry that I want to send to everyone I know and say, "THIS is exactly how I feel." "This is EXACTLY how my life is"...This book has been so validating during the ups and downs of the journey over the past 4 1/2 years.

Case in point: After a particularly exhausting week of Matt being gone and feeling the weight of a new diagnosis for Elizabeth, I read this entry on page 278:

"Too Complicated

Vinetta sighed. Life was so complicated now. She had never reckoned on life being complicated. It was like knitting on a dozen different needles. ~Sylvia Waugh

Life withour kids is complicated. The disability itself is complicated. Our emotional responses are intense and contradictory. The medical issues are complex; the technology our children use is intricate. Filling out a medical assistance form is tricky, as is figuring out the special education system. Hunting for resources can be an experience in maze walking.

Then there are the multiple filters we have to run everything through. Our kid leaves for school happy and comes home irritable and belligerent. Is it physical: Is she constipated? Are her new shoes to tight? Or is it medical: Did we forget the medication today? Is she getting an ear infection? Or is it environmental: Did the teacher assign new seats? Is it frustration? Is she tired of not being understood when she speaks? Or is it just a mood, just being a kid.

Then of course there is all the rest of life--our other kids, our relationships, our job, what to have for supper, how to kill the crabgrass, when/if to take our vacation. We are knitting on at least a dozen needles. It is complicated and it is hard. But we do it. We drop a lot of stitches but we knit our lives. And what interesting, varicolored, unique garments they turn out to be."

Elizabeth's Audiogram

We got all the information we needed from Elizabeth's ear-specific audiogram this week. Unfortunately, it revealed she has mild hearing loss in her right ear and significant hearing loss in her left ear. The next step will be to get her fitted for hearing aides..hopefully before this baby arrives! The test itself was more stressful for her and the audiologist was concerned that if she responded so adversely to the headphone in her ear, she probably wouldn't be excited about big bulky hearing aides, even if they are pink and have sparkles on them. (yes, that's possible) :) The bottom line is, we're so thankful that her hearing loss is treatable and seemingly "fixable", but we're really disappointed that she'll have to endure yet another round of tests, and have to learn how to deal with another "thing" that's uncomfortable for her.

The most difficult part of the appointment was when Elizabeth said, "God needs to heal my ears!" I told her we were going to keep asking Him to heal them. I'm so thankful for her childlike faith and pray that her heart, like ours, would continue to be protected when God's ways are not our ways.

He is Risen!

Happy Easter from the Harms Family!

Aunties, Uncles & Cousins, OH MY!

We had a wonderful time during a week long visit from my sister and her family. Elizabeth & Ruby loved playing with "the cousins" every day all day and miraculously we all slept well, stayed relatively healthy and even managed to make it out of the house a few times! Some of the highlights were:

~Visiting the St. Louis Zoo and enjoying and ice cream treat
~Feeding the Coi fish at the Botanical Gardens
~A birthday party for the Braun cousins at the Cupcakery
~Long walks, playing in the park and lots and lots of reading, dancing, playing dress up and
~our niece Eiley asking her mom if she could have surgery...(apparently Elizabeth's scars were pretty impressive)...and then after hearing what surgery actually involved...saying, "Mom, We need to pray for Elizabeth more!"
~A wonderful date night...adults only, thanks to our sweet babysitter.
~The fact that after 8 days, we were all sad to say goodbye...the visit was perfect from one end to the other.

Svea & David's Visit

Long but successful day

Thanks so much for your prayers and emails of encouragement! It means so much to us to know you're thinking of us on days like these. Elizabeth did beautifully today we arrived at 9am and finally left at 5pm, but all in all things went smoothly. As we anticipated, her procedure got pushed back and she finally got wheeled away at noon.  The GI felt good about what he saw: increasingly scarred over veins in her esophagus (which are less at risk of rupturing and causing a life threatening bleed). He had to inject two which looked like they could bleed soon, but overall feels like we're "making progress". The long term plan is to continue doing an endoscopy with sclarotherapy every 4-6 weeks for 4-6 months in a row and then take a break for 6 months or so and repeat the cycle until her varices go away...most likely when she's in her early teens all the while, praying she doesn't have a bleed in the middle of all this and require us to go to plan B.

We've also had some new developments that we're still processing:
*Monday we learned that Elizabeth has conductive hearing loss in one or both ears and will need amplification (hearing aides) once we do further "ear specific" tests. Would you join us in praying for complete healing for Elizabeth's hearing by the next test on April 15th?
*It appears that Elizabeth sprained her ankle at some point this week! While we were at the hospital today they were able to do x-rays and an ultrasound to confirm that it's not a hairline fracture or a clot, so that's a relief, but the poor thing has been limping for 2 days and yet we have no idea how it happened!
*We've got 2 more appointments tomorrow and Matt and I have a conference call with a specialist on Saturday who might be able to give us some input on possible speech therapies for Elizabeth...so we'll see.

It was a long day, we're glad to be home and eager to see the end of this long week...
Blessings,
Sara

Elizabeth's Endoscopy Tomorrow

We're halfway through a big week for Elizabeth. She had 3 appointments on Monday and 2 today, has an endoscopy scheduled for tomorrow morning and 2 more appointments scheduled for Friday. She's been a trooper throughout and we would appreciate your prayers for a smooth procedure tomorrow. Her scopes are usually scheduled for first thing in the morning and this one isn't until 10:00am (so more likely 11:00ish) and that means she won't be able to eat at all, and won't get any water after 7:00am. Would you keep us in your prayers tomorrow? Ruby will hang out with Sophie and Matt will have a busy day of work, so it'll just be Elizabug and me and we're praying for a grace-filled day.

We'll let you know how it goes. In the mean time, If you want to see a hilarious video of Elizabeth, check this out: http://www.youtube.com/watch?v=wyww30LIxQA

Love,
Sara & Matt

Happy Valentine's Day!