Merry Christmas

It's beginning to feel a lot like Christmas

If I had a dollar for every time I've said, "what a difference a year makes", I'd be rich! Last year I was still recovering from my c-section from having Ruby, we were majorly sleep deprived, Elizabeth had an undiagnosed ear infection and both girls had colds. This Advent, dispite many colds, the season has been truly meaningful, filled with anticipation, wonder and excitement. Elizabeth finally "gets" holidays, and though she still regularly says "Happy Birthday Thanksgiving!" we're definitely moving on and have many conversations about the meaning of Christmas every day. Daddy told her the Christmas story using the characters from her new Playmobil nativitiy set and she plays with it every day.

 

 

Her current favorite person in the story is Mary, who has a ponytail, so Elizabeth wants a ponytail. The shepard has a staff, so Elizabeth spends some time everyday walking around the house with a broom as her staff. She does remember an amazing amount of detail about the story though, and I'm humbled by how much she absorbs and how much we are writing on her heart already.

We picked out a beautiful chistmas tree and both both girls love seeing the lights.

 

 

Since Elizabeth's health is so stable, we are thrilled that we get to fly to California for the holidays. We'll be with ALL the Harms family for Christmas and some of the Peterson clan for New Year's so we are counting the days until we get on the plane!

Happy 1st Birthday Ruby!

From the moment of your birth you have been a gift of grace to our family. You are full of life and laughter and snuggles and spark. We are so glad God chose to share you with us! We love you little Ruby Christine.
Love,
Mommy, Daddy
& Elizabeth Joy

Successful Endoscopy

We're home and Elizabeth has shaken off the anesthesia and just ate a good lunch of her favorite oatmeal. We're so pleased that the endoscopy went smoothly. Here are the facts:

 

*Dr. Sheppard, (not McDreamy) ;) who has been our liver surgeon all along happened to be visiting from Australia, so he was available for her procedure today. That meant he was able to compare the condition of the varices from first-hand experience.

*Based on what he saw, He decided to sclerose (cauterize) 2 collateral veins that had "cherry red spots" indicating a high risk of an impending bleed.

*Elizabeth didn't have any problem with the anesthesia and quickly started eating and drinking after she woke up

*Because of our history with Dr. Sheppard, he was able to talk through her current labs and answer ALL of our concerns about her current labs and strange behavior. He gave us a clear explanation for her high ammonia levels (her portal hypertension is to blame, NOT hepatic encephalopathy) and was able to put us at ease about the recurrence of her funny symptoms and the long term outcomes. The bottom line is, we can expect her ammonia to spike every time she gets even minimally sick, and the increase in her ammonia will cause her to act drunk, lethargic and off-balance, but it should go away within hours. That's good news! He sat and talked with us for over an hour and we are so thankful for all of his input from years of experience.

*Through it all, we've once again seen Elizabeth's courage and bravery in the face of pain and fear. She is so strong, and such an overcomer. I want to be like her when I grow up!

 

Thanks for your prayers and encouraging emails. We're home and happy and have lots to be thankful for.

Endoscopy tomorrow

We're taking Elizabeth in for a regularly scheduled endoscopy tomorrow
morning to check out her varices. (to review, last winter they were the
most severe, Grade 4, then this summer they'd improved to Grade 3) We
had an ultrasound on Tuesday that went off without a hitch. Everything
appears to be stable and when we had to get a blood draw afterward,

she was a champ. Even though she handn't eaten in 16 hours, she was calm

and didn't cry for one single minute! She actually told the
phlebotomist which arm to stick, counted down and then asked for a
bandaid and a sucker...next she'll want a bike and a kitty! :)
Afterwards, we went to the hospital cafeteria for an "ice cream with
Daddy date." It's our new ritual and I believe it kept her from
totally freaking out the whole morning...she was so focused on the
prize.

Unfortunately, she's been acting a little strange. That, coupled with
some abnormal lab results, has us concerned. We're in conference with
the on-call Gastrointerologist and really need wisdom and discernment
about what to do. We've almost made it through the entire fall without
a hospitalization...only a few weeks left. We'd really like to stay
home with a healthy Elizabeth tonight.

We'll keep you posted.

Here's a photo of Elizabeth celebrating Dora the Explorer's 3rd Birthday.

"Squirrel-Proof"

First Steps

Well, it's actually steps 2 & 3, but we'll have a pedestrian before too long!

A meal for the history books

See that smile??

That's the smile of a girl who just finished eating her meal all by herself for the first time in her whole life! She requested oatmeal for dinner, and proceeded to eat more than a cup and then ask for more She ate the entire meal with her very own spoon and told me when she was full. Amazing.

Pumpkin Patch

This afternoon went to the pumpkin patch at Eckert's Farm in Illinois. It was a gorgeous fall day and we had a fantastic time watching the "pumkin lobber" shoot pumpkins into the orchard, cheering at the pig races, "go Hamma Montana!", feasting on corn dogs, pulled pork and fresh apple cider and taking a tractor ride through the apple orchards to pick out pumpkins. (actually, don't tell the girls, but we left the pumkins in the field and picked out small ones on our way out.)

Granna's Fall Visit

We had the most wonderful week with Granna. She delighted us by flying out for 7 days, just to treat us to happy meals, shopping, a little sleeping-in time, a long overdue date night for Matt and I, help with the "daily grind" and LOTS of snuggles, stories and treasured moments with the girls. Mom, thanks for everything. We can't can't wait to see you after Christmas!

Happy 3rd Birthday Elizabeth Joy

Our Dear Little Bug,

What a wonder you are! Three years have passed sine we first laid eyes on you, and I it has been the joy of our lives to spend each day with you. We had no idea how quickly you would fill our hearts to overflowing with love, joy, and delight. We are amazed at how hard you fight to overcome every challenge you face, how easily you receive people into your heart, how thoroughly you desire to please us and how easy you are to love. God has blessed us abundantly. We love you dear one. Happy Birthday!

Love, Daddy & Mommy

Two months down, Two to go

We made it through September and Elizabeth is as healthy as she's ever been. Praise God! I'm sorry we haven't updated you sooner...it's just been too busy around here. Elizabeth had a fantastic month. She's eating all of her food by mouth now, mostly purees that I spoon-feed her. While chewing is still not instinctive for her, she's making steady progress in that area too! She's jumping, running and climbing small stairs without hand support, she cracks us up constantly with her little sayings. Tonight after falling down, she said "Mommy, that scared me. I screamed like a girl!" Finally, she's potty-training! I guess these kinds of milestones are possible when one stays out of the hospital for more than 6 months! My mom will arrive next week to help us celebrate Matt's birthday on the 10th and Elizabeth's 3rd birthday on the 14th. It's hard to believe we've come so far.

Ruby continues to delight us as well. She'll turn one after Thanksgiving and she is most happy when she's rolling around on Elizabeth's bed, chewing on Elizabeth's blanket...pretending to be Elizabeth, I guess. We're truly thankful that the two are so enamored with one another and frequently hear giggles coming from the back seat, bedroom or high chairs as they look at each other and laugh at nothing in particular.

In final news, Matt has formally accepted an offer from Wash U to stay and join the faculty of the Neuromuscle Division beginning on July 1, 2009. We're taking it one year at a time, and still hope to land back in California eventually. However, after much prayer soul searching, we are excited to begin the next chapter of our lives here in St. Louis.

We hope you're enjoying the changing of seasons wherever you are, and appreciate your continued prayers for our family.

A Month in Pictures

For the first time in her short life, Elizabeth spent the entire month of September out of the hospital. We loved every minute of it!

Labor Day at Grant's Farm

We had a fantastic time at Grant's Farm to support the Jerry Lewis Telethon on Monday. Last year when we went, Elizabeth wasn't walking and Ruby was still a bun in the oven; Elizabeth wouldn't get near the goats in 2007, but this year, she couldn't get enough! What a difference a year makes.

Grandma came to Town

We were blessed by our friend Megan with a free airline ticket that expired in October, so we decided to fly Grandma out to keep us company while Matt had a business trip to Chicago. We had a ball! Elizabeth had her first professional haircut...with darling results. And Ruby turned into a full-flegged crawler. We were so sad to see her go, and are left counting the days until Christmas!

Future Olympian

I can't wait for 2024. I'm 9 months old now, and am practicing push-ups so I can be in top form when it comes time for the Olympic trials. Mom's got me on a hi-carb diet...mostly milk and rice cereal...just how I like it. I'm nearing 24 pounds and before too long, I'll be giving Shawn Johnson a run for her money!

 

Gotta love homegrown tomatoes

We're all big fans of the "red sunshine".

 

 

 

Adjusting Expectations

While overall, our appointment with the feeding therapist went well last week, in the aftermath, I realized I'd been hoping for a magic bullet. A "just hold the spoon this way and viola! She's suddenly able to chew!!" kinda miracle. That didn't happen, and as a result, I walked through a few days of disappointment where I was once again reminded of my deep desire to keep my bags packed in Holland, and not stay here too long. Ugh. It's such a process. One day, I feel peaceful and at rest, and the next, I'm gunning to get on the first flight outta this place. The bottom line is, Elizabeth is going to have to learn to chew, one incrimental step at a time and I need to make some adjustments to my expectations so that I'm not doing more damage to her fragile desire to eat and chew with my unrealistic goals for her.

I know I just sent out an email a few months ago with the miraculous news that she was eating again...what happened?? Well, that has not changed, she's still taking lots of pureed foods by mouth. but we've been struggling to get the volume we need into her since she needs 1200 calories per day to stay on her growth curve. (staying on the growth curve delays the need for daily growth hormone injections...a task her mommy isn't looking forward to) AND it's not helpful to be trying to teach her to chew (one cheerio at a time...for a grand total of 15 in a half hour!), while also trying to get her to take a lot of pureed volume...they're sort of mutually exclusive goals. As a result, we've brought in a dietician who is helping me design a blenderized diet (high calorie, low volume) and I've ordered a cookbook to help in the process. I'm focusing on providing E with positive interactions with food and preparing her blendrized meal, and taking a break from being her feeding therapist for a few months...we'll leave that to Mary.

The good news is, in the week since, E has really blossomed and is seeming more relaxed about meals, I'm less frustrated and we're having some really enjoyable experiences around food. That's an aswer to prayer.

Here are a few videos of our girls...They are simply delightful. The first is of Elizabeth playing Mommy to her doll. She aparently learned from watching me, because I've never taught her to do that.




After I clipped Elizabeth's nails, she wanted to use the clippers and went directly for Abby's nose. I'm not sure she gets the idea yet. Ruby's full of chatter these days, she's signing "more" and clapping and waving and might be trying to sign "all done" not sure on that one yet. We're having lots of fun.

Home Again!

It's nice to be home. We had a fantastic time in California. Both girls were healthy the entire time and the flights to and from were uneventful (if you can call schlepping 2 little ones across the country with everything they might need in a 6 hour period stuffed under the seat in front of you "uneventful") Thank you for your prayers for our trip...it was a resounding success and we can't wait to do it again. I'll post a few more pics of cousin camp when I get things together. A grand time was had by all. Until then, we're enjoying getting resettled in our home and the girls are re-exploring their "hood".

Sister Time on the Rug

Making Ruby Laugh

Ruby's Post-nap Hairdo

Ruby is itching to crawl, and I'm convinced she's started saying "Mama." We won't get to document it in her baby book until Matt's on board, but needless to say, it will be soon, I think. She's over 22 lbs now and LOVES to laugh. We get such a kick out of her easy going,
sunny personality.

Elizabeth had a round of labs as soon as we got back, and they showed that while still high, her ammonia is coming down, so we'll continue to watch it and confir with her doctors. She's got an appointment with the feeding clinic here at St. Louis Children's Hospital tomorrow so we're praying that this therapist has some new tricks up her sleeve. Granna taught her some sight words while on the plane back from California and she LOVED spelling, so we continue to play lots of word games, along with her daily diet of signing and reading. She loves drawing pictures for people & right now she's fixated on "Auntie Julia", Matt's sister, and "Benjamin" our friend in California.

Matt's job is going well and we're beginning to look down the road a little and (gasp) think about that light that's been at the end of the tunnel that we're going to be reaching soon...

2/3 down, 1/3 to go!

From our 8-month photo shoot

 

 

 

Elizabeth Speaks German!

Elizabeth is tri-lingual! She speaks English and American Sign Language, and apparently she's decided to add German to the list. Uncle Ralf and Auntie Julia, we'd welcome your help with pronunciation. This is a little rhyme that her Grandpa Harms loves to say to her...it involves bouncing her on his knee and then a pretend fall at some point...She loves it. I didn't realize she'd managed to memorize it too!

Peterson Family Reunion

We're having a fantastic time at Granna & Papa's house. We've enjoyed swimming, eating, laughing, playing, and relaxing with family. Here are only a few of the hundreds of photos we've taken.

Cousin Camp ~ July 2008