8ml

Tuesday was our last visit.  Claire is to 8 ml at 2.5 mg concentrate.  This is the last dose increase at this concentrate.  Next week it will be 1ml at 25mg. Sounds like a big jump, but the math works out right.  I say all that not knowing if we will even increase next week.  Claire is reacting at each dose.  Yesterday it was a swollen itchy lip and stomach cramps.  This morning it was diarrhea, and cramps.  Not a virus because it's different and the timing.  Hard to explain.  Anyway, spoke to her allergist and he wants to know how tomorrow goes, that will decide if we go back to 6ml or stay the course at 8ml.

This week my brother and sister (in law) rode with us.  SO MUCH FUN.  I laughed the whole time.  Not just at Britny's expense, but a little!!  I so appreciate my family's willingness to help in anyway possible.  I know this isn't hard to most, it's a trip to Dallas, but for me (us) it is huge.  The 3 hours there I am so stressed she will react, the way home I am wondering if this was the right decision.  God has led us so far.  He will continue, the doors have all been opened for us, so we will continue.

Even as I type I am reminded of a childhood friend who is dealing with her daughter fighting Cystic Fibrosis.  She is working towards getting a double lung transplant.  He daughter is 11 I think, too young to deal with anything remotely like this.  I pray for her daily, we are dealing with food and this friend must feel like she has the world on her shoulders.  I ask anyone reading to pray for her as well.  My friends name is Amanda, I'm not sure if she would want her whole name here.  I'll ask, maybe put her go fund me link here. 

I'm cutting this one short, not too much to say.  Hopefully more to say after next weeks increase!  Thank you again for your prayers.