Monday, October 4, 2010

Our new things

I find myself in this vicious cycle of living, feeling okay, and then getting smacked with something new. Something new to think about, something new to worry about. And I'm tired of it all. I don't know if I always recognize the signs that I'm stressed physically, but when I look around my house and see the dishes in the sink, the beds not made, and the piles of stuff lying around it's obvious. When I'm stressed and my life feels chaotic it shows up in my house.
We are still waiting to move forward with more appointments. I feel like I say that about every two months. I shared that we had seen the developmental pediatrician, but not what she had told us. She called on Friday to share the rest of her thoughts (that's right she called, not her nurse, not a scheduler, the doctor) and what she had come up with after talking with Abigail's neurologist. So I'll share the list with you of what lies ahead.
First of all we have a swallow study on the 15th. This will be to see if Abigail is microasperating. The symptoms of intermittent vomiting, unexplained fevers, and asthma flare ups every few weeks could all be easily explained by this. And because of her low muscle tone it would make sense. So we will find out in a little under two weeks if this is the case. I am not extremely worried about this. I think it's a very real possibility, but I don't know what they do for it, so I'm waiting patiently.
Next we have the issue of profusely sweating at times that nobody else is even hot. So we will have a urine test done to check for a pheocromocytoma (a tumor on the adrenal gland...not uncommon in NF patients). I am not worried about this one at all...mostly because she doesn't have any of the other symptoms, and the doctors are doing it to be proactive.
We will have a video eeg done as well. This is due to the leg tremors, as well as the fact that Abigail hasn't slept through the night in the past couple of months. I'm not very worried about this one either. Once again trying to be proactive, and cover all the bases of what could be going on.
And lastly, the thing that has my head spinning. Abigail has had these reactive bug bites for a little while now. We had thought that she had eczema as well as possibly some other childhood skin ailment. And although those are both possible we are now beginning to think that's not what has been going on. Her bug bite reactions have left her with blisters and these brown patches that look like bruises in quite a few places. It is bizarre because she is still getting them, and Jason and I are not getting bit. She had a blister on her arm last week when we went and immediately Dr. Keck asked me what it was. When I explained the bug bite theory she kindly said she didn't think that's what it was, and told us to look into mastocytosis. I linked to a page that explains it. Over all it is mostly likely only dermal, but there are some things that go along with the possibility of anaphylaxis with no warning or cause, that is a little overwhelming to a mama. It's apparently an extremely rare disorder, and although none of the NF literature says so, there seems to be a possible link between it and NF. We are waiting on our phone call from the dermatologist at Riley to figure out where to go from here. However in reading it's a little overwhelming to come across words like well as reading about the possibility of needing to be on a low-histamine diet. I became extremely overwhelmed after reading through the list of things she couldn't have, especially since her favorites are on there. So we are waiting some more to find out where to go from here.
I had once again gotten excited that Thursday would be our last trip to Riley of the year, for our routine pulmanologist appointment. But we have already added another, and it is appearing as if there are more to come. So as always feel free to pray for us, Abigail, and what the future holds. With each new step we take on this adventure I'm learning that God really is the same yesterday, today, and tomorrow. That as life holds ups and downs for us, and I start to get overwhelmed with it all, that the consistency He brings is all I need.

Trying to rest in the one who holds her future in His hands,

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