And what a busy birthday it was!
The weather was sunny and gorgeous. Ben had a 9:00 am appointment at our favorite tertiary care center for a Feeding Clinic evaluation. Since the drive is more than an hour long, we all needed to be up very early. We meant to get Isaac dressed for school and put him on the bus, but he awoke wheezing and coughing. The wheezing did clear up with his inhaler, but I was uncomfortable sending him to school during an asthma flare if we were going to be out of town. So we decided not to send him to school at all, and he ended up coming with us.
Ben had a very good initial session at Feeding Clinic. The director of the program (who is a very gentle, soft-spoken person) spent a long time talking with us and getting Ben’s medical history. Then we put him in a high chair (for some reason Mark chose a “manly” pink bib for him) and the director of the clinic fed Ben a mixture of apple, carrots and mangoes. Yummy! Ben ate a little bit with a minimum of gagging, and no choking. Apparently Ben has what the director calls “a pathologic tongue thrust”, and we will have to retrain his tongue not to push things out of his mouth. But he was pleased with how Ben did overall, and we are all hopeful that we can transition Ben to oral feeds soon. We will be working with Ben about 2-3 times a day with oral feeds, and hopefully have him scheduled for a swallowing study in the next few weeks.
The older boys occupied themselves with toys and video games during the long feeding session. The clinic has a very relaxed, kid-friendly atmostphere, and I was relieved that the older two weren’t bored and misbehaving. After the Feeding Clinic we all went out to breakfast at the local Friendly’s. I ate far too much!
Then we went to Lancaster, PA to visit their Barnes and Noble bookstore. We don’t have one of these near our home. The boys had a blast, and we bought a lot of cool books, mostly about space and the solar system, which Isaac is really into these days.
During Ben’s feeding session this morning, we had a revelation: the high chair at the clinic could recline, which would be a great feature for Ben with his limited trunk strength. We’ve never had a high chair like that even though Ben is our third child, so we went to Toys R Us to buy him one. We figure he’ll get years of use out of it. While we were there we also got him a cool brand new Exersaucer, but we haven’t assembled it yet.
We came home just in time for Ben’s physical therapy session. He wasn’t too happy at first (he had fallen asleep on the ride home and hadn’t taken a morning nap), but he cheered up thanks to big brother Jonny.
We had such a pleasant day spending time together as a family (FYI: Isaac didn’t wheeze once while we were out!) I had worried that having to go to the same teaching hospital where Ben was in the NICU almost exactly one year ago would bring back nothing but painful memories, but today wasn’t like that at all. I think that in many ways this has been the longest, most difficult year so far for our family, but today was all about sticking together, enjoying each other, and having hope for the future.