Well I'm definitely not the world's best blogger! I can't believe I haven't posted anything since Christmas!
I just wanted to give an update on Bryce. We took him to the ENT for a check-up a few weeks back and the doctor had him get his hearing tested again. Well his tympanogram levels were flat. :( The ENT checked Bryce's ear tubes and said that they are still in place and didn't appear to be blocked. He suggested that we bring him in and have him sedated. The doc will clean out his ear tubes and they will perform an ABR hearing test on him. I just hate to put him through yet another procedure, but I think it's important to stay on top of his hearing as it can affect his speech. I hope it is only some blockage causing the hearing loss, but we will soon find out as the ABR is a more accurate test. We are also going to coordinate with Bryce's plastic surgeon to have some lip pits removed. They are part of his syndrome, and his geneticist would like to have them biopsied. So we will be doing all that at once. I have had the hardest time scheduling this surgery/procedure though!! I have made so many numerous phone calls and finally talked to someone yesterday who is supposed to call me back to schedule it all.
We recently started working with a private feeding therapist in addition to Bryce's feeding therapist from Early Intervention. He went
months without wanting to swallow AT ALL. I couldn't figure out what was going on and he was not making any progress. We found a local feeding therapist that took our insurance, so we got an evaluation with her. We had our first session with her a couple of weeks ago and she gave us a new regimen to try with Bryce. Right now we are working on getting him to accept food on the sides of his mouth rather than just in the middle. We are also still working with the EI therapist and a couple of weeks ago she finally got him to start swallowing water again! I have no idea what changed, but I'm just happy to see even the teeniest of improvements!
After a long struggle with insurance and many phone calls, Bryce finally got a new pair of DAFOs. They were a different kind this time and did not have tread on the bottom, so we had to buy shoes to fit over them. Now if we can just get him to keep them on! The joy of orthotics and babies!
Bryce has finally started getting the hang of walking better and has been doing a lot more of it. It was really cute because for awhile, whenever he walked, he would have to hold on to his ears for balance! He's finally gotten past that, but it was cute while it lasted. LOL