What's been up

It's been a long time since I posted an update about Baby Roxy. A couple of friends got in touch, worried that we were back in the hospital, but thank God, we aren’t. Things have actually been pretty mellow.

My mom is still here, and stays until January 10th. I’m getting way too accustomed to 8 hours of sleep per night, but I don't think there is any way to prepare myself for sleep deprivation, so I'm just going to ride this train into the station. It was great to spend Christmas with my mom – that hasn’t happened in over 5 years.

Since early December, Roxanne and I have seen four different medical specialists. I made a point of finding doctors associated with hospitals other than Fairfax, because I don’t want to go back there. Don’t get me wrong, the medical care Roxy received was excellent, but working through Fairfax Hospital's administrative quagmire is a nightmare that I don’t want to revisit.

This month, we had an appointment with a Fairfax County Early Intervention Infant and Toddler Program coordinator. She and her colleagues evaluated Roxy to see what kind of therapy she needs to maximize her developmental potential as she deals with epilepsy. The good news is that her fine motor skills are, well, fine. One of her favorite things to do is play with linking rings: grabbing, shaking and flinging them around. Her gross motor skills are delayed because her neck and torso muscles are weak. She can’t hold her head steady for long, and she can’t roll over. Roxy will be getting physical therapy to help in those areas, starting as soon as all the paperwork is resolved.

We also saw a pulmonologist (lung doctor) this month. He was a new doctor for Roxanne, but must have been having a slow day, because he spent and hour and a half getting her full history and making recommendations. (Aside: it was kind of cool/strange that he was about my age. I guess I’m finally old enough that really smart specialists have made it through school.) Anyway, he was happy that Roxanne’s breathing is clear, which he attributes to the ND tube feedings: no aspirations going down or coming up. The problem is that she can’t keep the ND tube for more than a couple of months – it’s meant to be a temporary solution. The doctor felt strongly that she will need a G-tube – a feeding tube directly into her stomach, plus a nissen fudoplication – a surgical procedure that stops reflux.

We later saw a GI doctor at Georgtown University Hospital, plus a feeding tube specialist at Children’s Hospital, who both agreed that unless Roxanne’s swallow and/or reflux improve dramatically over the next few weeks, she will need a G-tube and nissen. We have an appointment to go see a pediatric GI surgeon at Georgetown in mid-January.

We went to see Roxy’s most excellent pediatric neurologist, Dr. Y, recently. He is still tweaking her drugs, trying to find the right mix that stops the seizures but doesn’t sedate her so much that she doesn’t develop well. In the meantime, we were hoping to have heard back from Dr. V, the epileptologist at Johns Hopkins, with recommendations, but we seem to have fallen into a black hole there. We have an appointment to see Dr. P, an epileptologist with Children's Hospital, in the new year.

Despite all of the above, I still say that things have been pretty mellow. Roxanne does have a few seizures per day, but they are mild, and she recovers well. Now that is less sedated, Roxy has more play time, where she squeals, waves her arms, kicks, and shakes her rattle. She is usually very happy, with a quick smile for me, Dan and Grandma Sharon. We are taking it one day at a time.

Merry Christmas to all, and best wishes for the new year.