Monday

I have not wanted to post, as you can tell, these have been some hard days since we have returned! I was afraid to say much...afraid I would regret what I might say! But where else do I have to go?... but to press in to my Jesus...I know that He loves Ashley more than I do!

As we have been walking thru Brittany's epilepsy this past year, the Lord led me to two books, Streams in the Desert and Praying the Scriptures for Your Children. Both of these have prepared me for this trial. As I was looking at my notes on Streams in the Desert, I was reminded of one of my favorite devotionals on Mark 4:35..."As believers, we should not expect to escape the storm. The disciples were obeying His command, yet they encountered the fiercest of storms and were in great danger of being drowned. In their distress, they cried out for Christ's assistance. Christ may delay coming to us during our times of distress, but it is simply so our faith may be tested and strengthened. His purpose is also that our prayers will be more powerful, our desire for deliverance will be greater and when deliverance finally comes we will appreciate it more fully...We will never know our level of genuine faith until it is tested in a fierce storm and that is why our Savior is on board." I guess I was hoping our storm was passing when we returned from CHOP...but isn't it easier to trust God when the sun is shining?

Now medically what we have learned...First of all, I have to say that I am grateful beyond words for my wise friend Tessa. Words can't even express all the time, energy, help and prayers that she has put forth toward Ashley's healing. I truly don't know where we would be without her! So...here we go. Ashley has continued to have much aching in her legs and recently has had a lot of light sensitivity and can only squint when seeing...that is why you have seen her in sun glasses recently, she's not trying to avoid you, well, actually that might be some of it too! Anyway, both are signs of magnesium deficiency and we have started her on a mag supplement and pray that it addresses these issues. We are also anxiously awaiting some stool/urine test results that will reveal more clearly what is going on in her gut, things that the scope can't see...bacteria, yeast, etc. It would be HUGE (not that I'm hoping for more issues) if these tests revealed something because it would partially explain her much delayed recovery. Like I said earlier, when the Celiac was triggered by her Sept. sickness, she was put on clindamycin and who knows what that started in her gut! PLEASE pray that we get the results soon and they provide some answers.

With what limited eating she is doing, we are putting her on the Specific Carbohydrate Diet. Here's a link... http://www.breakingtheviciouscycle.info/  We are still awaiting the arrival of the book, Breaking the Vicious Cycle: Intestinal Health Through Diet by Elaine Gottschall, but understand the gist of it. Basically, it's only putting into your body foods that are easy for you stomach to digest; no complex carbs, grains, etc.  It makes sense, if your gut is damaged, why not give it the easiest food to digest? Will comment more on this as we learn more, but we believe it is where we need to be headed.

Was also led by a friend this weekend to read the story of Jordan Rubin, the Maker's Diet guy. He was diagnosed with Crohn's disease, but had a two year, near death, battle to recover. I'm not saying this is the case with Ashley, but I do think that like Jordan's was not a typical Crohn's case, Ashley is not a typical Celiac case. If you want to read more of his fascinating story, here you go...http://www.jordanrubin.com/Jordan/JordansStory/tabid/1225/Default.aspx
Our UVA nurse said today that Ashley is the worst case she's ever seen... now the 3rd time we've heard that...a greater opportunity for God to reveal Himself and be glorified!

So, we still have no NG tube. We submitted our "calorie count" from Fri/Sat/Sun to the UVA dietician last night and she emailed back this morning that she was pleased. No huge breakthroughs yet, but also no further weight loss! Are we still considering it? Yes, because it is not easy for Ashley to intake these calories, but we'll stay on this course at least for now. We also began counseling today and feel that it is a very important part of her healing process, as she has been through much medical trauma and is still not desiring to really talk. Please continue to pray for this part of the healing process as well. Lastly, you can throw into the prayer mix that she would have no neurological complications from the Celiac damage, it is rare, but something we are reading and asking about as we do not want to leave any stone unturned!

Hope that wasn't too much information! My heart has continued to be broken when she constantly moans and says, "it hurts/it's hard!" What I wouldn't give to take away her pain! But, Heather shared a great quote with me tonight from the speaker on the YL Leadership Weekend..."You can't have a testimony without a test!" Praying for WISDOM from above that we would be studying the right materials to pass this test:)

Oh, I have to say thanks soo much to those who have visited recently! Kendall, Paige, the Wiese family, the Keyser family and Heather! It is soo important for Ashley to know that others are thinking about her and that she's not forgotten! If you are healthy and call ahead to make sure it is a good time, we would WELCOME you stopping by! She needs to continue to be around people, just don't be offended if she doesn't say much!

Grateful for your praying without ceasing!!!


I'm done...
Lori