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.