Back at one

It seems as though we are back at one with Layla. To say I was bummed yesterday with her results is an understatement. Again, do not get me wrong, I am thrilled that it seems as though she does not have Celiac's Disease, but I was also hoping that the biopsies would show something more definitive so we could treat it, get this baby girl feeling better and move on.

What the results did show was that she has microscopic inflammation. Which certainly means that something is up and we are not crazy, but the answer to "what is up" will take more tests, more appointments and therefore more time to figure out. I am pretty disheartened at this although I will plug forward as I am determined and committed to figuring this all out for my Layla cakes.

Microscopic inflammation can mean several things including that she could have an infection that just cant seem to get better. Or that she could be getting frequent reoccurring infections. He seemed to think it was more of the frequent reoccurring infections because we have been dealing with this for so long.

On a positive note, the blood work and biopsies showed that she is getting nutrients (relief) yet, her body is still not absorbing everything. He also mentioned that this could be affecting her moods as although we are feeding her constantly, if her body isnt absorbing everything than she is not getting the "full" feeling and may still be hungry. I am determined to tackle this head on as she is a tough eater and usually turns her head up at most food or will take a few bites and be done.

Being that the Dr. feels as though this is a reoccurring infection, he wants to order more blood work as to see if it could be an immune system deficiency. Her IGA levels from her blood work are still off and this would indicate and immune system issue.

Also we need to see a nutritionist to try and beef up her calories and maybe add a supplement to her formula to get the high caloric content in. In essence we need to see if we can get her to gain weight without totally blowing up her stomach and causing more uncomfortableness.

I spoke with her pediatrician last night and she is recommending that we see another allergist as well to get more definitive test results by doing a scratch test instead of just blood work. She, like myself, also feels as though a colonoscopy may be scheduled in the near future judging from her symptoms and her frequent belly pain and night awakenings. I mentioned this to Dr. Verhave as well however, he thinks we should do step 1 and step 2 before putting her through the evasive test of a colonoscopy although it was something he felt we should be considering after step 1 and step 2.

So what does this all mean? AHHHHHHHHHHHHHH! We are back at one without an official diagnosis and without a way to make this all better!
I have the allergist appointment scheduled for next Tuesday and I am waiting to hear back from the Boston Nutritionist. We have increased her Zantac and her gas drops and we shall see if this makes a difference. I will say that she woke up several times last night and was able to put herself back to sleep quickly. Only twice did I have to help her and both times it was less than 5 minutes and she was back to sleep. This was so much better than the past several nights of her waking up at least once an hour.

I am completely determined to get to the bottom of all this and I do have faith that we will. I think that the lack of sleep has added to me being a bit discouraged but I do know that better days are ahead and this is just another bump in the road in the journey of Motherhood.

xoxoxoxoxo