So we have a few things to get caught up on with River! Over the last few weeks River has been to Seattle Children’s Growth and Feeding Dynamics clinic; her 9 month check up with Cardiology; GI clinic check up; Feeding therapy with Jennifer; and is OFFICIALLY a walker! And in the next couple of weeks will go so a speech and hearing evaluation.
Cardiology: We finally got to see Dr. Obayashi after a 9 month hiatus! River had to go through the regular testing, ekg’s, blood pressure, and an echocardiogram. She was an amazing perfect patient for the technicians and the doctor. Everything checked out great! I don’t think River has to go back for another 9-12 months. It was also a good opportunity to chat with Dr. O about my current art projects regarding hearts and CHD. He is assisting me as much as he can by helping me pinpoint River’s CHD’s so that I can try to visualize them and eventually have several illustrations of her heart. Dr. O loves little River and has been amazed by her health and progress!
Seattle Children’s: Last week we visited Seattle Children’s Hospital for our long awaited Growth and Feeding Dynamics Clinic evaluation appointment! We decided to get this referal because they offer an Intensive Feeding Clinic that is a two week long program. I wanted to learn more about it and consider whether or not this would be a good place for River. They did a lot of the usual intake questions, they had to learn River’s history. We met with their feeding team, and talked about River’s journey with feeding tubes and oral aversion. I explained to them about the at-home wean that we attempted and they were extremely impressed by the progress she’s made with eating. Their program consists of two weeks, Monday through Friday, weekends off, where you go in the morning and do three back-to-back feeding therapy sessions until the afternoon. To do this program we would have to live up at the Ronald McDonald House, because the commute is just too brutal, and I told them I would be uninterested in it if I wasn’t staying in-town. They do believe River would be a great candidate for their program. By their estimates River is an acceptable BMI and growing at an adequate rate (very assuring :)). The other thing we talked about being a big plus for River’s oral eating is the need for peer interaction! They use to do the baby picnics and peer modeling at this clinic but that has declined, and it can be very tricky to find age appropriate peers while your child is in the program. I said that is a huge factor for me as we readily see River’s oral eating improve if she’s eating with her brother or other peers.
Now it’s on me!! I have to decide if I think their intensive program is the best thing for River! We are tentatively scheduled for the program during the first two weeks of September. I would have to move up to Seattle during that time. I’m going to weigh all the pros and cons and hopefully discuss this with families that have been through this same program.
Dr. Pickens: River had her weight and nutrition check up last week, following her regular feeding therapy. She did really well in FT and we are mainly working on her ability to chew food properly, and to encourage more drinking fluids! Fluids with calories is a huge part of a toddler’s consumption of daily calories and requirements for growth! Dr. P is happy that the Periactin at least proved to be somewhat an appetite stimulant and we discussed keeping her on it for longer intervals. As long as her appetite appears to have some improvement from the use then we are going to try and keep her on it for up to 7 weeks at a time before breaking. She is currently on it, and still seems to have a slight upswing in her drinking and eating while on it. Her weight is still hovering around 24lbs, but they are satisfied she is gaining weight again and don’t see a current need to increase her diet. We discussed the visit to Seattle. Dr. P has had one other patient attend this clinic, and they did see it help, as the child was at a 0 in the oral department, and the clinic helped him greatly increase his oral eating, but the commute was their biggest complaint, and the need for peer modeling.
Here’s a video of her walking (to Dr. P’s office):
Things are moving along on my CHD project and I’ll have a separate post soon regarding some of the heart art pieces!
River's Journey 