August 10th, 2006
Dillon had a wonderful time at his second birthday party. He got a lot of presents, and couldn’t get enough cake after he finally got brave enough to take a bite. There are pictures from the party posted in his photo albums, he was quite the cheeseball for the camera. I still can not believe he is two already!
He had his two year well baby check last month. He is 35.5 inches tall and weighs 31 pounds. His weight is finally catching up to his height, and this puts him in the 75th percentile for both categories! He is already half my height 😀 During the visit we got the referral to see an in network physiatrist (The Dr. we saw through Early On is not in our insurance network unfortunately) and got the prescription for his spinal X-rays to see where we stand with the scoliosis.
He will begin the ultrasound therapy as soon as he has the new braces for his ankles. The goal is to hopefully treat his neck and hypotonic ankles at the same time to see if that resolves the scoliosis.
We also had another visit with Dr. Jackson last month, and it went very well. He said that Dillon’s head is looking good and we can begin to come back every six months rather than every three. We discussed another surgery again, but since Dillon is not in any immediate danger his next reconstruction will be put off for as long as possible (but be done before he enters school). He still has the dark spot along with the “dent” in his forehead, but it is not something that causes him any pain and should not cause any problems. If I remember correctly, the explanation for that is that it is simply the way his bones shifted in to place after his surgery, and the dark bruised looking area are veins that are close to the surface of his skin. On an average day we are probably asked by strangers at least three times if he fell and hit his head. It doesn’t bother us though (most of the time 😉 ), we would probably ask the same if we saw a child who appeared to have a large bruise on their head. Not to mention it gives us the opportunity to open up a conversation and spread awareness on craniosynostosis.
It looks like our little summer break is coming to an end soon. Dillon will start back in the Early On program at the end of this month (he loves it there!), have the ultrasound therapy 2-3 days a week, and it’s also time for follow up with the ENT and ophthalmologist. Tomorrow Dillon will get to see his great grandma and grandpa! It should be a lot of fun, they haven’t seen him since he was about ten weeks old, before his surgery. We are looking forward to their visit!
June 22nd, 2006
Three more days and our baby will be two! I can’t believe how fast time has gone. It is so wonderful to watch him grow and develop, yet at the same time I want the clock to stop so he can remain my “baby” forever. He is turning in to such an independent little man determined to do everything himself. He adores books and helping mommy and daddy clean around the house. His curiosity and sense of wonder are never ending, he has to get in to and check everything out. And I mean everything. Did I mention he has to get in to everything? 😉
His speech and vocabulary are slowly but surely improving. He attempts to say about a dozen words now, his favorites being uh-oh, wow, and mine.
He recently had an evaluation by a physiatrist out of Children’s Hospital of Detroit. He’s a Dr. who comes to see Early On students a couple of times a year. It looks like Dillon may be beginning to develop scoliosis, and we are going to try ultrasound therapy for the torticollis. He does still need braces for his feet, as the Sure Steps didn’t stop Dillon from tippy-toeing so they were not effective for him. The Dr. sent us a letter with his findings that we will give to his pediatrician during his 2 year well baby check on 7/18.
The results of his Saethre-Chotzen Syndrome testing came back negative, but the geneticist says that does not rule it out. He said that roughly one third of people who do have it have an underlying gene change that the testing can not pick up. He feels that Dillon does have SCS, but can not say so with certainty without a genetic test that can back up a diagnosis.
His only appointments for July so far are his well baby check and follow up with Dr. Jackson on the 3rd. Looks like we will spend most of July having fun and going to swim lessons! I will be sure to post pictures of his 2nd birthday party, and update after we see Dr. Jackson again.
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…