Saturday, October 17, 2009

no news is good news (:

Hi Friends,

Sorry it's been a week since I posted, happily I haven't had much to post about!

Evie is doing so great, we took out her NG tube on Tuesday night, we only had to use it one time so we figured she didn't need it anymore... and she hasn't!

The drug company that has the clinical trial was in town Thursday, it sounds like she is a good candidate for the trial. That is a big relief to us. They met with our geneticist, who thought they might be able to start the trial mid-November pending IRB approval. It sounds like a while away, but I am actually glad to have a few more weeks of normalcy for Lyla's sake. Once she stops shouting "I'm so glad your home!" every time I walk in the door (after being gone for even just an hour!) I will probably feel better about being back in the hospital.

Evie's calcium levels in her blood and urine are on the rise, which is problematic. Kids who have hypophosphatasia can't absorb the calcium that is supposed to be going into their bones... and it circulates around in their blood and urine. We will be mixing low-calcium formula into her normal formula until she gets started on her medication, and her bones start absorbing things the way they are supposed to. If her calcium levels get too high it can be very bad for her kidneys and cause "failure to thrive" because she would feel all over crappy. So far she is still doing fine.

John, Lyla, and I are doing good (: I can't believe Evie will be a month old on Monday... it has gone so fast. Like I did when I was pregnant, I still feel like I go into "Lyla mode" during the day, trying to keep things as normal for her as I can, and "Evie mode" when I have some time to digest all that's going on with her. It is scary to think about all of the possiblities of Evie's condition and all that could happen with the drug trial, so I am still working on taking one day at a time. It feels good to cry out to God, and with God. I know he hears my prayers and the longings of my heart to take care of Evie the best I can with all of the unknowns. And sometimes it feels good to just cry it out.
Continuing Prayer Requests: 1. Evie's health - One specialist we have talked to thinks that Evie's bones will continue to weaken until we get her on the drug trial. Also prayer that we can keep her calcium levels under control. 2. That the IRB would pass the trial and the details of paperwork would go smoothly. 3. Adjustment for the rest of us as we become frequent visitors to the doctors offices to give urine samples, blood samples, and have check ups.

Thanks so much for loving us, and being willing to pray. We feel so blessed to have you as friends to go through life with (:

Here are some pictures from the hospital that my dad took:
Lyla had to "check Evie" every time she came to the hospital. She usually followed this by saying "I think she's workin!" or "Sounds like popcorn"

after the nurse told me that the cribs held up to 350 pounds, that's where Evie and I spent most of our time


  1. I was thinking the same thing! No news is good news! So glad to hear ALL of the news. We will continue to grow the prayer chain for Evie and your family. We LOVE you all very much! Love, Auntie Carrie xoxoxoxoxo

  2. Yay!!!! This is fantastic news! I was thinking things must be going well and that you were all enjoying your week together! We will continue to pray for you! Being a frequent hospital goer ourselves, we can say it does get easier for the most part. When Sonya goes we just have to find stuff to entertain her with for the long 6 hour visits for treatment. I have lot's of suggestions when your little Evie gets to that point! The pictures are just precious! Lyla is so adorable playing doctor with Evie! Who knew about those hospital cribs holding so much? Good to know! Many prayers and hugs for you!

  3. Thanks for the update and for sharing the precious pictures. Glad to hear that there is progress with the trial treatment. Still praying........

  4. Your pictures are so precious! I'm so glad to hear the trial is moving foward. I'll be praying for the process to go quickly and smoothly for Evie, so she will be started on the medication soon! I also want to a verse with you, as it's fitting for you and your family: "He who dwells in the shelter of the Most High will rest in the shadow of the Almighty" Psalm 91:1. May you have a wonderful week!

  5. The pictures are awesome!!! We continue to pray for you guys and thank you again for sharing your journey with all of us and being so real!!!!

  6. Loved seeing the pictures of you guys - evie is so beautiful! Praying for you often. Thanks for letting us be a part of your lives!