Overall, Grayson is doing well, we haven't had any emergency trips to the hospital since he was released after his third surgery in February. So that is excellent, but that doesn't mean that we haven't had 1-4 appointments every week since. It takes a lot of time juggling all his appointments.
Just to give you an idea, here are some of his appointments over a four week period.
Physical Therapy - 4 appointments
Occupational Therapy Evaluation
Swallow Study Evaluation
Genetics
Gastroenterology (in Cincinnati)
Colorectal Surgery (in Cincinnati)
Pediatrician
Ophthalmology
Otoacoustic Emissions (OAE) and Tympanometry
ENT
Pediatric Surgery
Blood work at the lab
So you can see he has had 15 appointments during this four week period, needless to say, it's a lot. This doesn't count the 2 trips to drop off samples to have urine sodium levels checked.
Grayson hasn't been sick since the first three and only three days of daycare back in March. That's been great that we have been able to keep him healthy.
Children with Down Syndrome are prone to have thyroid issues, so Grayson will get checked regularly for this. He had his first check a month ago (6 months old) and everything checked out fine with his thyroid.
As I mentioned in previous posts, due to his aspiration problems we have had to thicken his formula with oatmeal since April, the down side of this is that it is giving him quite a bit more calories and he has gained a bit of weight that is starting to slow him down with his physical therapy. He is currently at 75th percentile for weight versus length. They want him at 50%, He is currently 25 3/4" long and a bit over 17 lb.
His first eye exam went well and there weren't any major issues, although he does have astigmatisms in both eyes, so we'll see how that affects him down the road. We couldn't get valid results during his recent hearing test because Grayson wouldn't sit still long enough to conduct the tests, so we'll be revisiting that in the future.
Grayson is still on sodium chloride supplementation because his sodium levels have been bouncing around a bit and he is still sodium depleted. He had another urine sodium test today, so we'll see how that looks tomorrow.
He has been limited on how much food (solids) we have been able to give him because he was already getting too many calories with his thickened formula. He just had another swallow study evaluation two days ago and has gained some strength so he is clearing (or pulling back) the formula (not thickened) when he aspirates. So we just started him back on formula that isn't thickened. Yeah.... We have to monitor it close to make sure he doesn't get sick if he aspirates too much. Hopefully it works out, because this will allow us to get his calories under control and also be able to feed him more solids. So far he has had chicken, sweet potatoes and carrots all made by mommy.
Here in the Winston-Salem area we just started a chapter of D.A.D.S. (Dads Appreciating Down Syndrome). It's a national organization for fathers of children who have Down Syndrome. Since I have so much free time, I decided to take a position on the leadership team of the organization and I am handling the Communications for the group. So just a bit more stuff for me to handle. It's good to get together with the other fathers that can relate to your situation. You can explain it to someone all you want, but unless you live in our shoes it is really difficult to understand what we deal with on a day-to-day basis.
Things are progressing along, our lives have certainly changed, but this little boy is such a joy. I just added a picture of Grayson in his little pool and the swing we have in the backyard which as you can see he really likes.
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