Our first appointment was with GI/Liver Clinic. The Dr. was overall pleased with her demeanor and thought she looked really good. Her tummy was nice and soft when he did his exam.
A few months back in August I posted about an Ultrasound he ordered for Ayla due to an elevated Alpha-fetoprotien level in her blood work. The U/S came back normal and I thought that was the last I would hear about it. But he wanted to tell me that he is going to be watching that level with each round of labs he does. Apparently a rise in Alpha Fetoprotien levels can mean some sort of growth/mass within the liver.
*Now this is worst case scenario, which of course they have to tell us...but we REFUSE to believe that's the case for Ayla*
Needless to say we repeated labs today and are awaiting test results. I know you are thinking...."her ultrasound showed no mass" but apparently an U/S can only detect larger growth's and could miss a smaller one. There are types of scans that he will order should labs show elevated levels again.
*Again we are praying against this*
So that issue is very much on my mind....but I am just eager to hear the confirmation of what I already believe..that Ayla's levels will have returned to "normal" range.
On to the next thing...we're testing Ayla's stool for C-diff!! Yes...it's a possibility she has this again. She's been on 3 different rx's for her cold she has now kicked!! And that's when C-diff rears it's ugly head. Her tummy has been hurting and her BM's have been pretty nasty.
He also recommended a change in diet to rule out a Fructose Mal-absorption. Since fructose (sugar) is a type of lactose this could cause some pain and bloating as well. I have tried this before when we were dealing with C-diff for a period of 6 months and seen some improvement. I have tried to incorporate some of these ideas all the time in her diet but at times....we all reach for the easier packaged snack..and I am guilty of that.
So I think we are going to try and make some changes again and see what we get. Taking the "sample" to the lab tomorrow to test for C-diff- we usually hear the same day-so as updates come on these labs I will post at that time.
We would appreciate all the prayers we can get for Ayla her health and these labs.
CF Clinic was rather uneventful...which is great!! She sounded great, she is at the 50% percentile for weight at 32.5 pounds. I was excited to show them her PFT results that I had done at a local children's hospital (to show that she was able to do them) it was mostly practice for her but now they are going to perform these tests at each visit and were able to get a baseline today!!
She is really such a trooper, we had labs drawn, appointments all day and sputum culture and she was still a joy to be around!!
~krista
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