Full Day

Chase had his MRI today to follow up on his spine and C1 vertebrae. His last scan was about a year ago and showed narrowing of that vertebrae around his spinal cord, which is common with his condition. They said at that time they were just going to keep on eye on it to make sure that space around his spinal cord doesn't get any more narrow, otherwise they'll have to do a fusion. Chase did great for the MRI and was flirting with the nurses by cracking great big grins beforehand. When he woke up from the sedation after the scan, his fiesty personality came out. He was hungry and wanted food! With his firey temper, the nurse said she was surprised he wasn't a red head. After we fed him, he was good to go. The sedation wore off quickly because by the time they called us back, he didn't seem drowsy one bit. We should get the results of the MRI in the next couple days or so.
His next appt was with the audiologist for a hearing aid check. We've been struggling with his hearing aids for a long time now because he just keeps pulling them out as soon as you put them in. She gave us something called "huggies" that sort of wrap around his entire ear to make it more difficult to pull the hearing aids off. So far it hasn't made a difference. But Chase is old enough now that I think he understands the word "no", so we're going to try that and see if that helps at all....wishful thinking probably. They will do another hearing test in the next couple months to see if his hearing has changed at all.
We set a date for Chase's surgery. It will be August 24. And hopefully after that, we'll be one more step closer to getting rid of the trach!

From Chase June 09

Little video of Chase semi-standing


Little video of Chase laughing (audibly)...music to our ears. He's tolerating the Passy Muir (speaking valve) that snaps on the end of his trach much better. This was really the first time we've heard Chase laugh. It was wonderful!