It has been a busy week at the Children’s Home of Pittsburgh. Judah, as well as mommy and daddy, are getting settled in and learning the new routines and procedures. The Children’s Home (TCH) is a step-down facility similar to the Children’s Institute we spent a couple of weeks at back in October, however they focus more on teaching families how to care for their children and the equipment they will need to use. It also provides families like us – who have not yet been home with our kids – an opportunity to “nest” and live in with them in an environment closer to what it will be like, instead of being in a hospital. They have family areas with living rooms, kitchens, dining rooms, playrooms, and spaces to make you feel more comfortable for when you finally do go home.
Although there are always nurses and doctors just outside our room at TCH, it is primarily our responsibility as parents to care for Judah, prepare and administer his medications, and begin to really take on full responsibility of him. We are ready, and happy to take care of all of his needs, and one of the goals before we can be discharged from TCH is proving to the doctors and nurses (and our insurance company) that we can take care of him. At times there can be a lot to remember and keep in order, but we are quickly picking it all up, and it is no longer intimidating or daunting. It has become our routine, and we are able to do it while really focusing on Judah’s growth and development, both of which have been going wonderfully.
Judah is active and awake for much of the day, and sleeps very well through the nights. He continues to smile and laugh, sing and dance, and of course, charm every doctor and nurse who walks into the room. Judah even seems to enjoy keeping mommy and daddy on their toes, as on Friday night around 10pm, he decided to pull out his own feeding tube, which resulted in a trip for all of us back to the emergency room. It really wasn’t a major issue though, as our nurse at TCH immediately jumped into action as soon as he pulled it out, and put in a very proper replacement, which will last us long enough to get Judah in for an appointment to replace the tube with a “mic-key” button. It did keep us all up until 5am though, resulting in a very tired Judah (and mommy and daddy) all weekend long.
Judah is getting cuter by the day, and he (and we) wish all of you the best during this holiday season. Yet another Holiday spent somewhere other than our house, but wherever we are together, is home. Our best wishes to all, and to all who celebrate Christmas, we wish you a Merry Christmas with all the love we have. We hope it will not be too many more holidays that pass before we can be home and able to celebrate with all of you, but every day brings us closer to that time.
All of our love, to all of you