The 1st week of November we learned that Hayden had been accepted into the feeding program in Baltimore and they wanted him to start the following week. Fortunately, I have a spouse who is willing to sacrifice himself and be a great steward over our children at any cost. We quickly did as much as we could to help get things in motion. We also couldn't have done it without prayers and all those that helped us pack just before we flew out.
The next week came and we ended up canceling our flight due to the denial from our insurance company. We were run down and ready to give up. However, with a little energy left, I called our wonderful team of Austin doctors who quickly wrote letters of medical necessity on our behalf and we were approved Friday morning of the same week for an outpatient program instead of staying as recommended full-time in the hospital. This means that we get to come home every evening and have Sundays together with the family. It is a tender mercy to come home every night to our family. We will get two Saturdays off which we hope to take a train trip to DC and to celebrate Hanna's birthday.
By Saturday afternoon, we flew on separate flights to Baltimore and arrived Sunday all together at 2 AM.
Thanks to the recommendations for accommodations, KKI and the Ronald McDonald house, they help medical tourists reserve a nice hotel as they cannot accommodate large families. We were also able to rent a large van to haul all our luggage and family.
On Monday we checked into our short-term furnished rental apartment in the heart of downtown across from the harbor. We are on the 17th floor of a high-rise where Scott is able to walk to work and I am able to take a shuttle, bus or subway with Hayden to the clinic.
We are a family of five living in an inner-city with no vehicle. It is a fun adventure. We also were able to have a nanny (thanks to a referral from another mother in the program)
Wednesday was our first day at KK Institute for the feeding program. It was a whirlwind day. We are so grateful to be here together as a family to give each other support. The people working there welcomed us with open arms and jumped through hoops to get us in very quickly before the end of the year when our insurance clock would restart.
The program is intense to say the least. It felt like my first day of college of my undergraduate studies. I was learning where to go on campus and trying to understand my schedule for classes throughout the day. And of course no amount of planning could keep the day from starting without drama.
On the way to catch the shuttle, our prepared liquid tube feed lunch and dinner backpack exploded in the elevator (I am not going to miss the mishaps a feeding tube adventures; that could be a whole other blog) with no time to get a new bag or to clean up before going to the program. Fortunately, we were going to a hospital where those items could be replaced.
The day is scheduled by the half hour. The first day was filled with observations and assessments. He will get great service and therapy while he is there. I have no doubt in my mind that we chose to make the sacrifice to come to the best clinic for his complex set of needs. Nearly a week later we're starting to feel our feet underneath us and we'll be settling in for the next several weeks. We are giving this experience our al. We also want it to be great fun for the kids. We live across the street from the aquarium. We also live by so many exciting things for the children. They are having such a great time we are wearing out.