Well, it was that time of year (again!) and me and Miss B headed back up to Cincinnati Childrens this past week. Have I mentioned how much I just love that hospital? We've gotten the trip down to a record time of 6 hours, 15 minutes (with a short stop) so it isn't too bad. And we have a waiting list of people who like to accompany us (mostly for the location of the Cheesecake Factory close to the hospital, I'm sure). :)
On Tuesday, we saw the neurologist. We LOVE her. She was happy to see her "princess" as she calls Brooklyn and felt that while her tone is still too low, she has improved some in the past six weeks, showing that her brain is starting to heal itself and reroute through the damage. That is really good news. She also told us that her type of CP is diplegic CP, which mostly affects her legs. We discussed some things to be cautious about, some things to work on, and where we go from here. They were very excited that her seizures are under control except when she gets sick, so that is very good news.
She also gained three pounds on her feeding tube, so they were thrilled with that as well.
On Wednesday morning, she saw the team of developmental pediatricians who tested her progression in the various areas of development. Again, they felt like her legs were very weak and that her braces are very necessary to help her to walk safely. They agreed that she is globally delayed, but also that she is making some good progress. Her biggest areas of delay are her speech, gross motor skills, and of course feeding issues. They did give us the good news that her chromosomes all came back completely normal, proving further that this isn't a genetic issue and is all related to the CP.
Wednesday afternoon, Brooklyn participated in a video swallow study, where her food was dipped in Barium and then a series of x-rays were taken while she ate. A speech therapist, radiologist, and GI specialist watched her eat and drink different textures and flavors and observed how she chewed and swallowed. They determined that she has a delayed swallow initiation, which means that she retains food in her mouth too long and some of it can trickle down her throat before she closes off her airway to swallow, resulting in aspiration. It is probably due to low muscle tone in her mouth and poor tongue control, making it hard to eat efficiently. This is what causes her coughing, choking, gagging, and recurrent chest infections. Aspiration can be very serious and so this was a big concern for the feeding team to address.
We met with the feeding team on Thursday morning, and they were pleased to see a chunky baby in their midst. :) However, they were not too pleased with her refusing to eat more than a few bites and her swallowing issues that were present. They together came up with a plan to switch her tube feedings to nighttime only so that she will get hungry during the day, and continue her feeding therapy at home. They also made suggestions for how to help her remember how to chew, swallow, etc. They want her to maintain her weight using NG night feeds until March when we return to see them, and a decision will be made at that point as to whether or not she will require a G-tube (a feeding tube in her belly instead of from her nose to belly). An NG tube is not comfortable, but it is minimally invasive because it doesn't require surgery and can be very easily inserted and removed without too much risk. The placement has to be checked frequently (it can get displaced into the lungs) and the tape on her face can be irritating, but other than that it isn't too bad. A G-tube would be more convenient in many ways (no tape on the face, nothing shoved up your nose, etc) but it would require abdominal surgery, which has risks of its own. Obviously, we want to hold off and make sure that is necessary before the poor girl has to go through that. In the meantime, she'll get about 600 calories through her feeding tube at night, and hopefully consume 600 more on her own during the day. Her home health nurse will come out weekly to check her tube and her weight and make sure everything stays on track. Plan subject to change should Brooklyn do something crazy on us, of course!
After the appointment with the feeding team, we headed home through the beautiful snowy mountains!
Things got a little crazy after a while.
It was a very good visit though, and we are so glad to be home!
Thanks to Liz and Gram-B for all of your help on the trip... and thanks to Mimi and Grandad for babysitting Savannah!
