Update on Ashlyn & a layout

On Friday I took Ashlyn to see an ENT. She has not been able to smell for nearly a year (maybe longer, but we honestly don't know), and now that she is finally maintaining her weight and slowly stabilizing, it's time to figure out all the "loose ends" that she still has going on health wise. I honestly never thought about taking her to an ENT- she's never had any issues with her ears, throat or nose that I thought would warrant this type of visit. I was extremely impressed with this doctor, and his wealth of knowledge and ideas and plan of action still has my head swimming.


The ENT told us that Ashlyn has some nerve damage going on in her nose. He thinks it might be either Lupus (which has been thrown out for her before) or even another auto-immune disease other than her Crohn's, a thyroid issue, a lack of her being able to process zinc or even an allergen. She is going to have a slew of bloodwork done early next week to test for auto-immune markers, vitamin and mineral levels, etc.

The BEST part is that he ordered the RAST allergy test that the US Bio-Tek lab does that I WANTED done by her "regular" allergist who wouldn't do it- instead he had her do the back patch test which ended up being a frustrating process leaving me with confusion and more questions. She will be tested for everything from food to chemicals to inhalents to ingestions. (this part makes me giddy! I have been calling around trying to find an allergist to do this, but they don't- and then we literally stumble upon it through an ENT- crazy!)

She is also going to do an at-home smell test- it's a big old envelope stuffed with all kinds of things.

He sent a sample of her nasal mucuos to the lab and the plan is that he will call me next week to start her on long-term steroids and antibiotics, but he needs to run this through her GI doctor to make sure that nothing interferes with the Crohn's treatment. As it sits today, with her drug allergies, Cipro seems to be the antibiotic that she can take without hives or itching or swelling. She is currently taking Carafate for her ulcers/severe nausea/bile buildup and while taking this she cannot take Cipro. She has another week with the Carafate, and to be perfectly honest, I am more concerned with the gi issues than I am with her taking antibiotics for her nose. Another week truly won't matter for her nose as much as taking her off the Carafate will directly impact her ability to eat.

All I know is that I am not sure what will come out of all of this, but I am feeling hopeful. I have been emotionally drained lately. Although she is coming along wonderfully overall in so many areas, especially her weight, there are still the daily issues and big health issues that she needs to overcome so she can maintain long-term. She is not out of the woods yet, so to speak, and until she can eat fully and not depend upon high-calorie formula drinks for the majority of her nutrition, then we are not in the clear. We are closing in one the one year mark where she started her down-hill decline and it has impacted me more than i could ever have imagined. Little victories seem like monumental mountains, and some days I am not sure which way we are heading- up or down, but we make it through day by day and start again tomorrow.

I am sure you would like to see a layout. I have this one from the MSAM Thankful challenge. Friday was also a day where I hosted a challenge, and I chose to be thankful for "good times".

I have a busy week ahead- I hope it's a good one- for you, too! :)