April 22nd, 2006
Happy belated Easter to everyone! Our Easter went great, and Dillon had a blast hunting for eggs.
Dillon’s original appointment with the neurosurgeon was cancelled because Dr. Zakalik ended up having to do surgery that day. Since then, we have seen both Dr. Jackson and Dr. Zakalik. Dillon does still have some irregularities in his skull, but the good news is that they are not interfering with his brain growth or causing any compression! That was a huge relief, we were worried about that because it looked like he may have had some fused areas in his skull again.
We asked him weather or not Dillon’s flat nasal bridge could cause him breathng problems (he sounds raspy and short of breath when he sleeps), but he said that is an area an ENT would be suited to look in to. We told him Dillon already has an ENT, and it turns out he knows and likes Dr. McBrien. We’ve been very fortunate in that most of Dillon’s Dr’s know each other and have very good reputations. Next time we have follow up with Dr. McBrien for Dillon’s ears, we will ask her about that area of his nose.
In the meantime, Dr. Zakalik will be contacting Dr. Jackson so they can discuss the irregularities in Dillon’s skull (flattening above the left eye, asymmetry, defects..) and weather or not anything should be done. We’re waiting to hear back about that, but if there’s no immediate concerns, we follow up in three months with Dr. Jackson.
He said overall Dillon looks great, and on a grade scale would give him an A- or B+!!!!! That was wonderful to hear 🙂
While we’ve been busy running here and there, Dillon’s been busy working on that vocabulary of his. He is saying about 6 or 7 words now, and working hard on more. He tries to repeat almost everything we say (guess it’s time to watch my mouth 😉 ) and still really enjoys using sign language. Ball, Bubble, and fishie are his three favorite words.
I’ll update as soon as we get the results from the Saethre-Chotzen testing back, or after we hear back from either Dr. J or Dr. Z.
April 8th, 2006
…If you ask Dillon where his are he will point right at them, and then clap for himself each time. We love seeing that big proud grin he gets. He occasionaly gets ears and eyes confused, but they may sound similar to him.
He had his appointment with Dr. Jackson last month, who wanted a CT scan of Dillon’s head. Fortunately, we already had the one ordered from Dr. Zakalik scheduled so it worked out well. The scan itself went over well, and Dillon had no trouble waking from the anesthesia. This time, they allowed me to be in the room as they sedated him. He fell asleep quickly, but not without putting up a hard fight first! His little fists were balled up and he was ready to swing. I’m sure if he could talk he would have been cursing at all of us 😉 He has follow up for the scan with Dr. Zakalik Tuesday, and with Dr. Jackson on the 17th.
I mentioned in a post back in September that Dillon may have Saethre-Chotzen Syndrome. We hadn’t had the testing performed because insurance wouldn’t cover it unless a lab in state performed the test. Unfortunately, there isn’t a lab here in Michigan that does it, and the blood sample would have to be shipped to Johns Hopkins University. Well, our social worker at Early On/MIPP was able to get GAP funding approved to pay for the test! She looked in to the funding after Dillon’s PT Carole mentioned the insurance concern to her. Dillon had his blood drawn for the test last week, and it takes roughly six weeks to get the results. The geneticist, Dr. Aughton, will call us once they arrive.
We also went to see Dr. Rao again last month. Both him and another Dr. in the office examined Dillon, and noticed some muscle shifting (I hope that’s the right term) in his eyes. He said that at this point it is possible an eye muscle problem could be contributing to Dillon’s head tilt, which has become more noticable lately, however, there didn’t appear to be any muscle problems at his last exam. It isn’t a severe muscle problem so there is no treatment required for it yet. Dr. Rao will see him again in six months to monitor it.
More to come after Tuesdays appointment…