Yesterday we met with Dr. Benzick. I wanted to fill him in on our week in Houston and he needed to check Alex's incision. As always, he was incredibly supportive. He is such a blessing in our lives. I am thankful every day that we chose him as our pediatrician before we knew what would be facing us. Through this whole roller coaster ride he has stood shoulder to shoulder with us, always putting Alex's well being before anything else. I love that he is not afraid to admit that he doesn't know everything and is willing to work with our specialists for Alex's benefit. It is so rare to find a Doctor like this. He agreed with everything we learned in Houston. He thought the port was a good idea which put my mind at ease. he is excited to consult with Dr. Koenig on the best treatment for Alex.
We are almost all the way through the "formalities" of the MDCP program. Our application and medicaid application are through. Our overnight should be either this week or next week. After our overnight, services have to start within 24 hours. We had a home health care agency come out yesterday. We are going to have a nurse all day Tuesday and Thursday. I really wanted 3 half days but I spoke to numerous companies and no one was able to staff that. It will be nice for Alex and I have to have a little break a couple times a week.
Alex's port surgery is scheduled for March 12th. We will travel to Houston on the 9th or 10th. We will be admitted on the 11th and discharged on the 13th. While we are there we will see Dr. Koenig, the immunologist, the GI and possibly the endocrinologist. Then we are home for 2 weeks and head out to cincinnati! So March will be BUSY!!!!!
Please pray for all of us. I am trying not to think to far ahead. We have a long wait till we get results but some of the possibilities are scary. I am trying to keep my head in the moment and be thankful for each day. The stress of almost four years of medical and financial strain is taking its toll on me. I am tired and have stress knots in my back and neck. I really feel like the answers we have so desparately searched for are almost here. I am just not sure I like them!
Thank you for the constant support and prayers.