Good News, Bad News

 First of all, I want to thank you all for the overwhelming outpouring of love after last week's post. I received e-mails and messages from people I had not spoken with in years and people I barely know. We have been overwhelmed with support, love and prayers for baby K. Thank you so much and please keep praying.
Just to catch you up - we spent the majority of last week in San Luis Pass - it was wonderful to relax a little and get away. We were able to give Kiersyn her "feel good" medicine - Carafate, so she felt good and did well. Praise God for that.
Her biopsies came back on Tuesday and were all normal. The doctor reiterated how loose her Lower Esophageal Sphincter was at the time of endoscopy and said "Look, I'm not going to kid you, it's going to be a long few years". Not exactly what you want to hear from your child's doctor. She also said to "just stay away" from solid foods. I've been so frustrated by the outcome. I truly wanted something to turn up that would be treatable and a quick fix for K. Yet here we are back at the beginning with what we've always known - she's a little GERDling. After further discussion, Kiersyn's GI doctor has also recommended that we see an Endocrinologist for some lab work since her weight does not correlate with her intake and she has had issues with fluid retention. I don't know when that will be since Kiersyn's surgery to remove the dermoid cyst next to her eye is this Friday.
The doctor did however, recommend trying peas next if we decided to try anything new. Remarkably - it's been a stunning success and has helped with her insane sleeping issues. The two days she had peas she went from waking up 10-12 times a night and eating once or twice to waking up only one time and not eating at all. Last night, thinking how well this was all going, I decided to try one more bite of carrots again. Epic failure. We were right back to the same routine of waking up every few minutes and fussing all morning. It just baffles me. I believe she is allergic/intolerant to many things and we've happened to stumble on one that doesn't cause a reaction or a reflux flare. All we know for sure is that milk,carrots, sweet potatoes, rice cereal and oatmeal are all off limits. It does seem hopeful that we have found SOMETHING she can tolerate and we continue to pray that we will find more.
I am amazed at how quickly Kiersyn's issues and all the terrible things that come with GERD have become a part of our "normal". I've been through many stages with this monster of a disease - feeling like perhaps it wasn't really a problem, irritated that my child cried SO much and ALL the time (even angry at her at times), worrying about every small detail, spending 24/7 researching and fighting it, thinking "just have to make it to 6 months" (when minor reflux is supposed to get better), and I feel like I am finally just accepting that this is it. This is not what I imagined when I got pregnant and dreamed about the perfect, happy baby I would bring home. There wasn't anything in the baby books about how to remain calm and peaceful to comfort your 6 month old who still screams much of the time or how to deal with it, look alive and be alert through it when you're getting up as much as 12 times a night. But this is what we've been handed and I can wallow in it or I can breathe deep of Christ's compassion and learn how to appreciate the sacred moments of my child's infancy in the midst of pain and difficulty. That's pretty much what all of life is anyway. Finding the sacred moments in the midst of chaos. Or maybe it's the chaos that's sacred. Clearly God has much to show us.
In any event, Kiersyn remains on Carafate until we get past Friday's surgery in an attempt to make recovery as easy and comfortable as possible. It is truly our magic medicine and she is the happiest, sweetest, smilingest baby in the world as long as she's on it. Everything seems so simple and fun when she feels this good. I enjoy every moment of the day, don't want to put her down for naps, and spend all day trying to make her laugh. Good days are so very precious. I hate that we can not keep her on it and completely pain free forever. For now, we are enjoying the rest of the week until the big day on Friday. One hurdle at a time. We do not know what time Kiersyn's surgery will be on Friday but please keep her and the doctors in your prayers on the morning of the 9th.

Lastly,
Our thoughts and prayers are with all those affected by the Austin-area fires.
This drought has lasted far too long.
We continue to pray for rain.