Tuesday, February 7, 2012

Exciting news; its been a long time coming!

I have known this might happen for a few days now, but was holding off on the announcement until I was sure of what I wanted to do.

Addison is going to Cincinnati Children's Hospital!
I first contacted Dr. L, a world-renowned Colorectal surgeon, when Addison was only 2 months old. They have helped us many, many times over the phone - even emailing me direction on how to do her irrigations. I can't imagine how miserable her life wouldve been until now had we not known how to do those to make her comfortable when nothing else worked. We put in over 5 requests over the first year of her life and all were denied by her insurance. We got an estimate on self-pay.... almost $10,000. So that was out of the question. Part of the draw of moving to Ohio was going to be getting the authorization to go to places like Cincinnati.
The program Addison is taking part in is called the Bowel Management clinic, and their goal is to find the exact doses of laxatives/enemas needed to get her bowels emptied everyday. This is CRITICAL to her recovery from the C-Difficile infection.... we feel what is happening, is that old bacteria-infected stool is not coming out the way it should and keeps re-infecting her everytime she starts to get better.

The downside is that she has to go under anesthesia again, and I'm terrified that she will have another regression. I keep trying to remind myself that there's no proof that when she was under, anything was going to go wrong, and that perhaps it was just a poorly timed coincedence. I guess we haven't made that much progress since 9 months though, especially in regards to the areas of her regression - comprehension and speech. So better now than once she's even older and has made more progress forward. We plan on talking with them about a lot of other things while we are there and they have offered us to see their GI team as well as a Mitochondrial Specialist.

We will be leaving tomorrow night, and come home sometime Friday. We will enjoy the weekend at home with the family, and then Sunday night we will leave again, and be there Monday - Friday. Its going to be a long 10 days that is for sure! Please say a prayer that things stay stable with Baby Audrina, we had a tough decision to make on taking Addison with everything going on with me, but otherwise it would have to be put off for another couple of months, and then id have to go with a brand new baby. So,we are taking a big risk, but I am confident that no matter what, God will keep us safe and everything will be okay. Also, please just say a prayer that Addison handles the anesthesia okay and that everything goes as planned during her visit. I will update as I can throughout our trip.

1 comment:

  1. I'm so excited for you to be going to Cincinnati Children's! It took 5 grueling months (which seems like nothing compared to your situation) for us to get a diagnosis for our sweet girl and Cincinnati was finally the place that was able to give us some answers. I hope they can do the same for you! Thoughts and prayers!