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!

The King of the Castle Returns!

We're THRILLED to have Matt home and get back to our little piece of "normal" over here. We had a great time during our "princess week" but are glad that King Daddy is home. We missed him and are so happy to be together again. It was a little hard to get Elizabeth to look at the camera, they were both so fixated on their Polly Pocket dolls...a sweet treat Daddy brought home from his adventures to Target in San Mateo...he he he....

A Little Sunshine

What's better than a glass of OJ? A dose of my girls in the morning! They've been playing "summer" lately...stripping down and "swimming" in the basement. Much of this was without my consent, while I thought they were quietly playing so I could make dinner...sigh. Well, I decided to embrace the fun and yesterday we went all out...swimsuits, inner tubes, flip flops and beach towels. We took turns jumping into the water (the yoga mat) and had a grand time.

 

Matt's dad's (7 hr!) surgery went well and if they had a bed for him on the ward, he'd be out of the ICU by now, so that's encouraging. The surgeons believe they got both the tumors out with the remainder of the pancreas and now it's just time to recover, adjust to his new life as a diabetic and stay cancer-free! We're passing the time during Matt's absence slowly...but things are going really well! We're hunkered down at home and all in all, having a really great time. Sweet friends have delivered a few groceries and necessities and stopped by to chat, and tomorrow (shhh, don't tell the girls!) we're meeting friends at an indoor pool for some open swim time. That will be a highlight of our week for sure.

We've also been doing a little preschool here and there. Elizabeth has started spelling Ruby's name so I cut out the letters in play dough and she figured out how to arrange them with only verbal
prompts from me about what direction the letters went. She's a smart cookie!

The Peterson Family at its Best

I've been wanting to post the following video since we got home...it just makes me happy to watch it and remember how much fun we have together.

This is why we move heaven and earth to spend Christmas with our families.

We just love them! Matt and I are totally delighted with our families of origin and then feel doubly blessed that we married in to such great families-in-law. And as you can tell from this video, we're a goofy bunch doing what we do best...eating and singing.

Elizabeth's follow-up

This fun picture of Matt with the girls was taken on our Christmas trip to CA by the fabulous Corrie Sands.

 

Elizabeth continues to recover well from her surgical adventure last week. We're pleased that her hearing is much improved and to clarify in response to some questions, the varicose veins in her esophagus were a mixture of many that looked "really good" and one that needed to be cauterized twice to decrease the risk of bleeding. So she still has varices, but they're stable and the treatment seems to be working. The incision made to close her g-tube site and remove the protruding gastric tissue was successful, but after 7 days under the bandage, we looked at it Sunday evening and were concerned that it might be starting to become infected. As a result, we saw the surgical folks on Monday. Apparently fistula closures are notorious for growing infections so they were glad to be getting an early jump on it and gave us special antimicrobial dressing and prescribed 7 days of nasty tasting, and REALLY expensive antibiotics. To keep track, this is her 7th antibiotic in 45 days...her poor GI tract must be completely confused.

 

On a side note, our peanut is a CHAMP at taking horrible tasting food/medicine. Her very first "milk" was a broken down formula for post-heart surgery kiddos that literally smelled and tasted like wet moldy trash...it was disgusting. Yet she grew to love it and even preferred it over breast milk for a while after we could finally introduce her to "the good stuff". She's taken liquid iron supplements on and off and that's like swallowing pennies, she takes penicillin every day, and that's notorious for making kids gag and now, the surgical nurse told us that most kids can't even get this current antibiotic down...and the only thing that sometimes works is blending it with Hershey's chocolate syrup. Well, she has to take more than a teaspoon 3 times a day, so rather than increase the volume of that torturous stuff, we gave it a shot and just gave it to her straight, without any flavoring...and she didn't even bat an eyelash! She was completely unfazed. Amazing.

 

After just three doses of antibiotics and 24 hours under the special dressing, the site looks improved and we're hopeful that we avoided a mini-crisis. We're especially grateful because Matt's on a plane now to fly to CA for his Dad's cancer surgery and will be gone until late Sunday evening. We'd definitely appreciate your prayers for an uneventful week and a successful surgery for Grandpa Harms.

"Flawless"

That's the word the surgeon used, so I guess we can use it too! Thank you for your prayers...All three of Elizabeth's procedures went beautifully. She was cheerful and peaceful all morning, despite the early hour, and after cheerfully chatting the nurse's ear off, responded well to the anesthesia and drifted off to a "happy place". This was her longest surgery to date and took almost two and a half hours...but she rested contentedly in recovery and 2 hours later woke up, drank some juice, scarfed some graham crackers and was ready to head home! Matt and I were pretty amazed! To top it off, she got to ride in her very own wheelchair out to the car and as we climbed in she cheerfully announced, "That was EASY!"

 

Amazing. We've gotten so used to curve balls & unexpected complications on this journey with Elizabeth, and honestly, sometimes have a hard time even hoping for a smooth and easy road. But lately we've been practicing believing that God is good ALL the time and have been meditating on Psalm 112:7 which says, "He will have no fear of bad news; his heart is steadfast, trusting in the LORD."...and incredibly, our hearts are growing in confidence and trust and rest. So it's good news all around. Ruby had a marvelous morning with Sophie and sweet Kristen offered to keep her until after her nap so I could get Elizabeth settled at home. What a good friend!

 

I'm off to tend to Elizabeth, but wanted to share the latest...Thanks again for praying for our family!

 

 

Our little "midas tune up" tomorrow

We've got a big day tomorrow. Now that we have FULLY recovered from our Christmas adventure we're back on the schedule for regular endoscopies to check in on the varicose veins in Elizabeth's esophagus. We'd planned to do the procedure before Christmas and combine it with a surgical procedure to close her g-tube site, which has remained open since we pulled out her tube last February. In a sign of God's grace, at the last minute, we decided to delay the procedure until after our trip. After seeing how sick Elizabeth got while we were gone, it's a good thing we did! In the interim, she now needs her ear tubes replaced, so we were able to add yet another procedure to our docket for tomorrow.

Technically, each of the procedures is scheduled as "same day" so we'll get to the hospital bright and early at 5:45am, then Eliza-bug will go under general anesthesia for a few hours and if all goes well, we'll be home by dinnertime...

We'd appreciate your prayers for grace and Elizabeth's protection. Our flight home from California was an amazing example of how God's grace can carry us through lots of logistical obstacles with ease and we're asking God to supply the same grace for tomorrow. Ruby will play at Sophie's house so she'll be happy as a clam.

We'll let you know how it goes!

Our Mango is 23 Weeks Old!

Apparently she's the size of a mango...she's certainly making her
presence known these days! I love to feel her kicks and jabs.

Ahhh Sisters...

While checking in at the Pediatrician's office Ruby gave Elizabeth a shove.

Me: Ruby do not push your sister! I want you to give her a hug and
say, "I'm sorry sister."

Ruby: "I'm NOT sorry!"

hmmmm....that's a first...I had to laugh.

At home, one hour later, Ruby stole a toy from Elizabeth and was being
a grump in general.

Me: "Ruby, I don't like your attitude at all. If you want to keep
playing, you need to be cheerful!"

Elizabeth: "Yeah, I don't like your attitude at all"

Sigh....at least they're honest! I can't wait to add a 3rd little
princess to the castle in only a few months...

Home from California

We're finally home after a whirlwind trip to California. I never thought I'd think 2 weeks was a whirlwind, but after the week we've had, we feel like we've been in a tornado and are just grateful our feet are still on the ground.

We thoroughly enjoyed our Christmas with Granna & Papa Peterson, and all the aunties and uncles, and cousins. Baby Harms #3 will be the 7th GIRL cousin on that side, so we're not planning on putting away the dress up clothes anytime soon.  We spent a wonderful evening celebrating my parents' 35th wedding anniversary and are thankful beyond words for the heritage we have. We also had a chance to spend a few hours with my grandmother who is near the end of her beautiful life. Our time together was a gift.

Unfortunately for the 3rd time in as many trips, both Elizabeth and Ruby got a virus while we were away and by the time we got to the Bay Area on New Years Day to spend a few days with Grandma and Granpda Harms, Elizabeth was pretty sick. To make a long, exhausting story very short, both girls were feverish & coughing and nobody slept much over the weekend. On Sunday, Elizabeth was diagnosed with a bacterial pneumonia at Urgent Care and given two rounds of antibiotic injections so we could get on a plane yesterday to return home to St. Louis. Needless to say, Matt and I are doing our best not to make any rash promises to "never travel anywhere every again!" sigh...it's tempting though.

At our follow-up appointment with the pediatrician this morning, we confirmed that she also has another ear infection and Ruby has croup. We'll be so glad to get Elizabeth's tubes re-inserted on January 25th since this is her 2nd ear infection since we discovered her tubes had come out 4 weeks ago!  Also on the 25th, she'll get an endoscopy to see the status of the varices in her esophagus and they'll also stitch up her g-tube site which has remained unhealed since we removed her g-tube last February.

Lastly, we'll get another set of labs tomorrow to follow up on a strangely low platelet count seen on her blood work in California. We'll keep you posted if it amounts to something.

Merry Christmas from the growing Harms Family

Merry Christmas! We're celebrating Jesus' birth with our family in California and hope you have a wonderful celebration wherever you are.

Love,

Matt, Sara, Elizabeth, Ruby and Baby Harms #3! (Due in May)

 

 

But an angel appeared and said to them, "Do not be afraid; for behold, I bring you good news of great joy which will be for all people. For today in the city of David there has been born for you a Savior, who is Christ the Lord."

Luke 2:10-11