Relieved and Hopeful

I am relieved and hopeful. We are back from Boston Children's Hospital and once again the treatment we received there is second to none! Dr. Verhave was absolutely fantastic and I truly felt comfortable with him treating Layla. I will tell you that after strike 2 with Hasbro, I will no longer be going there and I plan on telling my Pediatrician this upon my next visit.

Here is what transpired with the visit. Dr. Verhave believes that she is showing all of the classic symptoms of Celiac. Her weight dropping, the fact that she has skinny arms and legs and a distended belly, and of course the uncomfortable fussiness. He also feels that the bloodwork that was done, showed certain signs that SHOULD HAVE given Hasbro the heads up to do more bloodwork. There is a certain level in the blood (for the life of me I cannot remember the 3 letter abbreviation he used and I should have written it down) that should be at a certain place. Layla's is on the low end which is usually what one would see if they have Celiac's Disease. If you remember correctly, the first bloodtest that was done on Layla came back very high for Celiac's the second came back negative. In Dr. Verhave's opinion, this means the tests were inconclusive... not to be confused with negative. The only true way to tell if a person has Celiac is to have an endoscopy done in which case they will take cells and send them out for biopsy. His office will be contacting me within the next 2 days in order to schedule this test for the next week or so.

I will also add (and I apologize for the angry frustration here) that he looked at me and said, "After these blood tests nobody went any further with this?" To which I replied, "No, they suggested the wait and see approach and hence the reason for me coming here." He said that he was surprised that Hasbro didnt do any further testing and I told him, that I wasnt surprised that I should have began with Boston to begin with.

So we shall see what will transpire. He did say that if she did end up being negative for Celiac's he wouldnt leave me high and dry. That most likely she just has a severe allergy to certain foods and we may have to muddle through to figure it out, but that we would figure it out.

So where we stand now is an endoscopy and we will go from there. I am relieved, happy and so glad that the appointment finally arrived. It was a bit surreal to do the drive again as it has been so long. Yet, once I was on the road, all the memories of my sick Hannah came flooding back to me. I tried to explain it all to her, of course she couldnt remember a thing, but it did feel good to explain that connection to her. To let her walk the path that we took to get her on her road to recovery. Thankfully she doesnt remember it, but at the same time, I want her to know what this hospital did for her and I will continue to drill that into her tiny head. I will never forget and I will always be grateful and give back to BCH.

I am signing off for now as I have a sleepy little Layla wanting to go nigh nighs. Til the next post and Happy Birthday dear Jay. This date not only was a significant one for me to get through for Layla, but it also let me know that things would be okay because you are watching over us from above on this which would have been your 30th. Balloons to heaven my friend! I'll meet you at Gillians someday! xoxoxo