Happy Mother's Day!

 

 

Elizabeth and Ruby, thanks for letting me practice on you! I promise I'll get it right soon. It's been quite a journey, but I cannot think of anything I'd rather be doing with the best years of my life. I am so thankful God allowed me to be your mommy.

 

A Happy Meal Indeed!

It's been a few weeks since Elizabeth's last illness and somehow, she's become a completely new kid! It's really miraculous. She's begun eating like never before and eating real normal table food...PB&J (with crusts, but cut in triangles), a hamburger and fries from Sonic (won't be going there again, but she enjoyed the burger), quesadillas with refried beans and sour cream, oh and olives!, a Denver scramble and toast with butter, and tonight she dined on sloppy joes and carrot sticks (dipped in ranch dressing of course)!

I watch her eat and my jaw drops. Quite suddenly, the fear is gone. She just knows she can do it and launches right in...that is, after I tell her that she's eating the same thing as Jude (our sweet friend who is 4 and a half). THANK you for your steadfast prayers for our little Bean. She's doing amazingly and we give all the glory to God. I can't figure out how to embed the video...so until I get the kinks worked out, to watch the Miracle in action click HERE.

Eggo Waffles + lots of TLC = weight gain!

A few of you have emailed or called to check on the latest with Elizabeth, so I thought I'd send a brief update to let you know Elizabeth seems to have fully recovered from her illnesses of a few weeks ago! After eating like a champ for 4 days straight (1 cup of oatmeal fortified with cream and butter and flax seed and 2 Eggo waffles for breakfast) and then resuming her regular diet, she's gaining back the weight she lost, is doing well. Her cardiology apt. went well and nothing seems to have changed since 6 mos. ago, her labs came back either normal or typically irregular (some of her tests are always a little off) and we're just waiting on a few more, but feeling more assured that she's back on track. We'll meet with her GI in 2 weeks to regroup and talk about how to address her Portal Hypertension moving forward, but other than that, we'll be status quo for the next little while.

Endoscopy follow-up

THANK YOU for your prayers! We're home and the procedure went really smoothly. Ruby had a grand time at her friend Sophie's house and Elizabeth was strong and brave despite knowing what was about to happen. We got an IV in on the first try, were able to get all the blood we needed for labs and the anesthesiologist was extremely responsive to my concerns about how to put her under. He gave her an advance dose of some of the anesthesia so she could fall asleep comfortably in my arms before I took her back to the procedure room.

 

The endoscopy went well, though they had to inject two varices which were quite "juicy". We got slightly differing reports from our GI and the one who actually did the injecting, so it's hard to tell exactly what the bottom line is. It's somewhere between "this is what we'd expect at this stage and not too worrisome" and "Gosh, it's surprising that we still have to inject varices at this point, perhaps her Portal Hypertension isn't getting better". 

 

We'll see what the labs show as far as other possible causes for her weight loss. We're still praying that it's just the effect of multiple illnesses and once she starts eating well, she'll be gaining weight like a champ. She hasn't been able to keep much food or water down yet, so please continue to pray for that. She seems more fragile this time around perhaps because she's simply out of "reserves") and we can't go too long without her taking in nutrition.

 

Thanks for continuing to walk with us...

Love,

Sara

Another Endoscopy

This morning Elizabeth has another Endoscopy. This one's been cancelled twice now because she's been sick both times. We're not sure if it's just the multiple viruses in a row or something more significant, but Elizabeth has lost almost 2 pounds in the last 2 months. She's wasting away and we're growing increasingly concerned! This endoscopy is important to tell us if we're moving in the right direction with the sclerotherapy (treatment for her espophogeal varices) or if she's getting worse and that's what's producing the symptoms. We're running a bunch of other labs to try to uncover other possibilities. Last week when we came to the endoscopy, they cancelled the procedure but put her through a bunch of tests that really traumatized her. I don't think she or I can do that again. Will you pray for God's mercy for Elizabeth today? Smooth procedures, Comfort from the trauma and unknown and fear of the known, and a clear revelation of what's going on here?? We'd really covet your prayers today.

 

 

Happy Easter

 

Have Hugs & Kisses Stored Up, Will Travel

Grandma and Grandpa Harms came to town last week so we had the pleasure of helping Grandma celebrate her birthday! The girls had a ball! They really know their grandparents on both sides now and it's delightful to watch their relationships blossom. And they always shower us with fun goodies! One afternoon, Grandma let the girls unload her blue suitcase and look through all their little treats. Just this morning, more than a week later, Elizabeth said, "I want to talk to Grandma and Grandpa," and when I explained that they were in California she said, "I want a blue suitcase."...yeah, I bet you do!

Grandma & Grandpa, that's not the only reason we wish you would come back soon! We miss you already.

Happy Birthday Christine!

I'd just like to let it be known, I really hit the jackpot when I married Matt. Not just because of the amazing man he is, but because of the truly wonderful family of which I became a part. And when it comes to in-laws, (whom I would have accepted regardless, since I was so enamored with their son) I couldn't have done better.

In honor of her birthday (a week ago now), I'd love to share just a bit about what I love most about Christine Harms, my dear mother-in-love.

Mom, thanks for truly blessing Matt and I to be our own couple. I've never felt that I had to earn your approval or win your love. When I married Matt, you were part of the package. A cheerleader, supporter, encourager, wise counselor, and godly role model. Thank you for praying for us, and telling us so. Thank you for carrying our burdens in your heart, following our highs and lows without offering too much advice and yet always being ready with a word of support, love and blessing. Thank you for buying us green things, and not being offended (or showing it) when in my distractedness I let them die. Thank you for cleaning our SF apartment top to bottom so it would be spic and span for the new tenants.

Thank you for celebrating each of our daughters and loving us by loving them. Thank you for the countless hours you spent in Elizabeth's hospital room, not crowding me out, but available when I needed you. Thanks for driving up to the city to give me a break once a week...I miss our Mondays! Thank you for affirming me as a mom and wife, building me up reminding me of the really important things. Thank you for making such an effort to KNOW your grand-daughters and prioritizing trips to see us.

You are a wonderful example of a Titus 2 Woman...godly, gracious and wise. I am so thankful to have you in my life. I love you!

Love, Sara

Hope and healing

We've been waiting for spring around here. It's cold one day, warm the next and besides the trouble that creates in wardrobe selection, it seriously messes with our minds! We keep hoping, knowing it's coming, but are disappointed each time winter rears its chilly head again.

When it comes to Elizabeth's health we are determined that "spring" is here to stay. She's doing so well. She is still eating well and maintaining her weight, (Praise God!) her therapies are paying off and she's gaining strength and dexterity. She and Ruby are pretty similar now in their physical abilities, and because their balance is about comparable (though Ruby is definitely stronger now) they enjoy the same kinds of play. I think I forgot to mention it, but we ended up having tubes placed in Elizabeth's ears at the same time she had her January endoscopy. That has been a tremendous success and we're thrilled with how wax-free and healthy those little ears are. We're hoping to take Elizabeth to a Turner Syndrome clinic this Spring or early Summer. We'd like to have her evaluated by someone who works with a high population of girls with Turner's and has a grasp of the whole picture. I frequently feel like I'm missing some information on how she ticks and would love any insight we can glean about her overall health as well as development.

On a sweet note, for the first time this week Elizabeth was able to tell us when she didn't feel well. She started feeling crummy around lunch time and told me so, saying, "I don't feel well. I'm sick." Sure enough she took a 2.5 hour nap and was feverish when I woke her up. She ended up spiking at 104 and we were praying for it to be a simple virus. (Sadly we couldn't even give her Tylenol or Motrin because of her liver and bleeding issues, so the poor dear had to sweat it out.) I asked her if she wanted to pray that God would heal her, and she said yes, and immediately squinted her eyes and prayed, "Dear Jesus, Heal me. Make me whole." and some other things I didn't understand. Then she looked up and said, "I'm healed." We put her to bed that night, still feverish, and when she woke up the next morning, the first words out of her mouth were, "I feel better!" Sure enough, no fevers all day, and no snot for the first time in weeks! She truly was healed!

In light of Grandpa Harms' cancer and Elizabeth's health, I frequently ask God to give me more faith to not only believe He CAN heal, but that he's GOING to heal. I certainly don't have it all worked out yet, but it's really encouraging to watch Elizabeth's childlike faith...the kind of faith I'm supposed to have, in action. I believe Lord, Help my unbelief.

That's one way to make them "princess pj's"

No more button for Eliza-button!

Drum roll please.....We took out Elizabeth's G-tube tonight! I can't explain all the conflicting feelings in my heart. I'm SO thankful that we had the g-tube to help keep Elizabeth alive so many times when she was so sick, to help her grow when she didn't know how to drink or eat. While at first I definitely had a love/hate relationship with the "button", and all I could think of was trying to wean her so we could take it out, in the past year and a half I'd made peace with it, and was in fact, thankful for the flexibility it provided us as we tried to teach Elizabug to eat.

After talking it over with her GI, we agreed that now that she's solidly eating by mouth (still learning to chew but making steady progress), she's proven that she can eat enough to keep from loosing weight and she's stayed out of the hospital and eating by mouth despite some gnarly colds this winter. Suddenly, removing the tube became realistic. So we did it! Ironically, I shed a few tears...it's been quite a run for the little button, but otherwise it was pretty anticlimactic in light of how much her eating and tube feeding has dominated our lives for the last 3 1/3 years.

We're praising God that tonight, Elizabeth is tube free, eating and drinking by mouth and sleeping soundly at home. The next step is finding homes for all the tubing and syringes we've got in our basement...It feels good to finally be able to say, "we don't need it!" Here are some before and after pictures.

Happy Valentine's Day!

Sisters, Sisters,
There were never such devoted sisters.
Never had to have a chaperone, no sir!
I'm there to keep my eye on her.

Princess Parties, Pit Bulls & Playgrounds, Oh My!

February is the month for hearts and tutus and princess parties! It's months like these when I'm really glad I have girls. All my dress up dreams come true and we can wear tights and "panty shoes" (fancy shoes) and crowns any time we want. There are 5 families in our little group of friends. The gals meet for bible study, the men meet for bible study, the families do breakfast together once a month and the kids (10 under age 4) just have a ball together. Emily (in the pink dress) threw a "Kingdom of Love" party and we all (I do mean all) dressed up as princesses and knights. Elizabeth was looking forward to going since I told her about it. Every day she asked to "go to the Valentines Party and wear a princess dress and a crown". We did a dry run over the weekend and let them play in some dress up clothes our OT brought over when she heard we were going to this party. Ruby can say "tutu" now and when she puts one on, we think she looks like one of the hippos doing ballet from fantasia...he he he. I just think a tutu makes household chores so much more fun!

After our princess Party, I had put the girls down for their quiet times and gone back to the car to finish unloading when I heard a woman screaming for help in the alley behind our house. She was being attacked by pit bulls that had escaped their yards to attack her dog! I called 911, and after another neighbor got the dogs to retreat, stayed with her until the police & EMTs came.

When the girls woke up from their quiet times, we went to the park. At the end of our time there, Elizabeth fell about 2 feet to the ground off of a cement structure and landed on her back in the wood chips. She seemed okay and after a few tears played for a bit longer before heading for the car. On our way there, she seemed dizzy, and lethargic and as soon as I buckled her in, she got white as a sheet, started babbling a bit and falling asleep! My first thought was that she'd ruptured her XL spleen and after running it by Matt, we decided to be safe and head for the ER at Children's. Fortunately, after the work-up in the ER proved she was okay, she began to perk up a bit and we were discharged in just under 2 hours. We stopped by the cafeteria for ice cream and headed home where we crashed from all the adrenaline from the day! See what happens when we leave our house??

Stanley the Snowman

I'm a California Girl at heart. I could do without winter, cold floors, hands cracking from all the dry heated air and icy streets, but I LOVE SNOW! A week or so after our first snow we got a major storm that gave us something to get excited about. Daddy helped the girls build Stanley the Snowman, ("Daddy!" she said, after kissing him, "Stanly tastes like water!") and Ruby helped herself to a snack. She's pretty much always trolling for food. It was a great family weekend.

Call Me Ruby Bon Jovi

SNOW!

We finally have some snow that's sticking to the ground! It started to snow while we were driving to church and really came down during the service. We emerged to a winter scene, complete with snow falling hard to quickly cover any tire marks or footprints. It's fun to finally feel like there's a payoff for all this cold weather. :)

We bundled the girls up when we got home and had some fun running and playing in the backyard. Ruby decided she liked snow once I showed her she could eat it, and Elizabeth was brave and decided to make her first snow angel! Dad did some asthetic touchups before I could take the picture, so what you're seeing has been given some attention with a broom. :) He WAS sweeping the sidewalk for us though, so I guess Ican't complain!

We also built a tiny snowman, difficult to do since it was so dry, but we managed and the girls had a great time.

Celebrating Life

A few years ago, we were asked to share our journey with Elizabeth for a video project. It was a powerful experience for both of us. I've attached the link to the video below.

Miracle Babies Video

A Good Day

We're home from the hospital and thankful for a very smooth, peaceful day. Elizabeth was a champ and came through the procedures beautifully. They found 3 more "cherry red spots" (spots that are at high risk of bleeding) and out of the 5 varices she has running down her esophagus, they sclarosed 3 of them. We'll need to go back for another endoscopy on March 2. We'll be on this schedule of looking every 4-6 weeks until they get the upper hand and the body creates different collateral veins that are more stable, or in the case that she has a major bleed and we need to evaluate other treatment options. (liver transplant) Given the options, we'll take the first.

 

Since they had to inject the varices, she was at higher risk of bleeding, so they kept her for observation until 4 this afternoon. I was able to drop Ruby off at our friend Kristin's home and she had a marvelous time playing with her friend Sophie. The afternoon in the hospital was absolutely peaceful (despite the fact that it was FREEZING outside (5 degrees when we were driving to the hospital!). Matt was able to return to work and Elizabeth watched all the Sesame Street and Signing Times she could get her hands on, ate right off the hospital menu (a first for her!!) and was her delightful self (as we were leaving, she turned to our nurse and said, "Thank you for Lunch!") We saw many of our nurse friends and they marveled at how big and smart Elizabeth has gotten over the last year.

 

When we got home, Matt had to run back to work, so I set the girls up on the couch with an animal video and set to making dinner. When the video stopped, Elizabeth hopped off the couch and announced, "I had a great day!" Amazingly, it's true. Despite the pain of getting the IV, the discomfort of not being able to eat or drink until 1pm, and the stress of another hospital visit, our Peanut was thankful for Dairy Queen ice cream, her favorite videos, a morning with her daddy and oatmeal for dinner. All of our prayers were answered and I for one am amazed at how kind God is to give us such grace for what could have been a really stressful day. (Thank you again Kristen and Sophia) 

 

These days, we are certainly learning a lot about what a "good day" really looks like.

 

 

Elizabeth's Proceedure Tomorrow

We'd appreciate your prayers for Elizabeth tomorrow as she is sedated for her endoscopy. We were also able to arrange to have her tubes placed in her ears while she's in the OR, so she'll be spared an additional sedation/intubation and hospital experience. We'll be taking Ruby with us and all need to be at the hospital at 7:00am. If all goes well, we should be home by late afternoon.

 

Would you pray...

~for Elizabeth to come through the proceedure with flying colors,

~that God would give the surgeons discernment and wisdom about how aggressive to be in sclarosing the varices.

~for no complications!

~for Ruby to be flexible

~Anything else that comes to mind!

 

We are so thankful for all your support and prayers. We'll let you know how things go!

 

Post-Christmas Update

We are so thankful that we got to spend almost two whole weeks with family in California. Elizabeth and Ruby got to see aunts and uncles and cousins galore and we enjoyed the few moments we had to put our feet up while the Grandparents loved on the girls. While the trip couldn't technically be called "restful", it did allow us to spend time with the Harms Family in advance of Matt's dad's surgery to remove the kidney cancer which had invited itself into his pancreas. Since Matt had to cancel his plans to attend his dad's first surgery during the Fall of 2007 due to Elizabeth's hospitalization, we were especially grateful to share these moments with the family this time around.  

 

Matt stayed in the Bay Area for the surgery while I took the girls to Clovis for a few days with my family.  Sadly, shortly after arriving in California, both girls got colds, and a week later Elizabeth's had turned into a bacterial infection in her ears. After flushing out her ears, a bunch of days of fevers, improving then worsening symptoms and consults with a pediatrician friend, we finally got antibiotics the day before we flew home. I, for one, am ready to take a trip that doesn't include any emergency trips to the doctor! The trip home was equally eventful, and needless to say, while we're so sad to say goodbye to family, we're glad to be home. 

 

The day before Dad's surgery, we finally were able to meet with the "feeding therapy guru" as I like to call her. Despite E's fevers and overall misery, we actually had a great session and she was able to get a clear picture of Elizabeth's abilities and limitations. We got some feedback and tools that should either prepare us for an intensive session later in the spring when we get called up from the waiting list, or will allow me to help Elizabeth make the progress she needs here at home without the intensive sessions. We're now waiting for E to get well so we can get this party started!

 

On Monday we'll meet with Elizabeth's ENT to discuss putting tubes in her ears to help us avoid more infections and hearing loss, and on Thursday she has another upper endoscopy to check the status of the varices we recently sclerosed. We've got a lot going on and would appreciate your prayers for our health. It's apparent that even a simple cold can throw Elizabeth off track for a while physically, create bigger problems in her little body and often results in a regression of the skills that were so hard earned.  But it's cold season and I can only quarantine us so much!

 

In Ruby news, she'll be 14 months old next week and is eager to do everything Elizabeth does. Her favorite words are, "YEAH!" in response to anything that sounds like a question, and "no-no"...which she says while holding a hair-clip or patting her head where the said hair clip should be...I guess we tell her not to take out her bows a lot.  Now that she's walking everywhere, she's eager to start running! She can't quite pick up her feet that fast, but her attempts are too cute. Oh, and when she hears any kind of music, she bobs her head, shakes her bum and throws her hands in the air....The girls keep me on my toes and thankful for naps and quiet times. :)