Silly Yak

Two weeks ago today, I took Kelsey to Phoenix Children's Hospital for an upper GI Endoscopy.  She had been suffering from intense stomach pain for months now and we just really wanted to know how to help her!  So, I found this great GI Doctor (who is also a BYU grad! :)  and he asked us to come down to the hospital so he could take some photos and tissue samples of her insides . . . 

 I love that Kelsey still gets excited over little girl things, like the Tinkerbell sticker they put on her name bracelet! 

 She didn't really like the hospital gown.  But then again, what girl does?

 The nurse told her she could pick out a stuffed animal from a basket they had.  They were donated new toys for the kids there and she picked a little deer named, "Whisper."  It suddenly made me want to donate toys like others had done for my little girl.  It brought a smile to her nervous face!

 This was what made her so nervous----but she handled it like a trooper!

 When Kelsey gets nervous, she giggles!  In fact, the whole time the nurse was putting in the I.V., she was laughing and making faces!

 I stayed with her until they put her to sleep.  It is a very strange feeling to watch your child go unconscious.  I've never seen that before and it was a bit eerie . . . she looked so lifeless laying there. I'm glad they had me leave the room.  As I sat in the waiting area, I 
thought that it might be Celiac Disease because Tom's mother and niece both have it and it's hereditary.  Then, my mind starting going places like, "what if it's cancer? what if it's ulcers? what if, what if . . ."  

When the doctor came out, he said, "Well, it looks like Celiac Disease to me."  I said, "Oh shoot . . ." and began to feel a lump in my throat.  No mother wants to hear that their daughter has a condition that will change their life and make certain things difficult for them.  Then, I suddenly remembered my fears from a few moments ago about cancer, etc. and then I gained my courage again to face Celiac.  "We can handle this," I told him.  He showed me a photo of her small intestine and it had small white blistery sores all throughout.  "It's NOT suppossed to look like this," he said.  However, pathologically, she has no lymphocytes in her tissue so he decided to call it "atypical celiac disease."  He wants her to follow a strict gluten-free diet for 6 months then go back for a blood check to see if we have improved her test numbers.  But this, most likely, will be a condition she will  have all her life.

She was really loopy on the way home so I let her rest up before I broke the news to her.  She handled it like a trooper.  Kohler is the one who broke down and cried when I told him.  He hugged Kelsey so tightly and said, "Mom, you don't understand . . . I just love her SO much!"  That absolutely warmed my heart.  I always knew he loved her, but I didn't know how much he truly cared about her until that very moment.  We had a nice long talk and even a Family Night lesson about how, as a family, we would help Kelsey so she could feel better.  So far, it's been pretty good.  It's been two weeks and we are still not the experts--more like "silly yaks" rather than Celiacs!  ha ha  (Silly Yak is actually the brand of a gluten-free online site---I loved the play on words!)  

I know we will have up days and down days.  Yesterday, during church, her tummy hurt and she knew exactly what she had eaten that was wrong.  Tears ran down her face as she looked over at me. I felt so helpless because there was nothing I could do to stop the pain.  My heart ached . . .

The choice is hers on what she eats---I can't be the "gluten police." I can gently remind her, but it's ultimately her decision.  If she doesn't follow a gluten free diet, she can be prone to thyroid disease and Lymphoma (cancer).  We don't want that!!  So, we will soon get into a routine and be better educated on what brands are good and where to get what she needs.  Her Grandmother Chamberlain and friends here in Gilbert who have Celiac have offered fabulous advice and we are SO grateful!  I have tried over the past two weeks to make her feel as normal as possible in our home and make things she can eat.  We've made gluten free banana bread and chocolate chip cookies that are really pretty good!  I can control pretty much everything at home---it's just when she is out with friends or at school that she will have to make those choices or go without--to avoid getting sick.  I love her SOOOO much and together we will make this work.  I am up for the challenge!!