Every year around the time that Ryan has a birthday, we take a little family adventure to St Louis to visit the Down syndrome clinic. When we learned that he had Down syndrome, we were so blessed to know that one of the nation’s best clinics was right down the road from us. We called them up and they introduced us to the wonders of long, but worth it, days.
You see, a lot of parents of children with Down syndrome do not know what to expect when they hear the diagnosis. Because there can be varying degrees of issues, it can be very scary and hard to maneuver.
Our Down syndrome clinic takes a lot of the guess work out for you as to which specialists and doctors you need to see. They coordinate all of your visits for one day so that you can avoid making tons of trips to appointments. Score!
This year was going to be a big year for little Ryan. When he was born, they discovered he had a small hole in his heart that had nothing to do with his extra chromosome. It was a fairly common hole called a PFO. We were going to be having an echo done to see if it had closed.
The day started early at 8am where he saw his geneticist. He weighed in at 30 pounds and 34 inches, 75 percentile among other child his age with Down syndrome. Nice and proportional, so no fear of obesity. We talked over his speech delays and head shape issues, which the doctor assured us were fine. She said he had great teeth and just went on about how cute he was.
Next up came the visit to audiology. His hearing was good and we finally go the okay to just get checked every year. Up until then we had to go every 6 months or so which can be difficult.
We went for a little break out of the hospital to get some lunch and walk around the zoo for a few minutes. Daddy Head then took Ryan back while I stayed at the zoo with Lilibeth and Ben. (I plan to tell you more about that later.)
Ryan had his echo which they told us the next day was normal. His hole had closed up! No more problems expected there.
Ryan then went to have his eyes checked. A few months back he began crossing his eyes, so we were hoping that they could assure us that there was no problem. His eye sight was perfect, so he must just like to torture us with crossing his eyes. Oh, the effects of having another child who had epilepsy as a baby.
Lastly was blood work! Thyroid was clear and everything looked fine besides a low white blood cell count. We will take that, since they assured us that with no history of constant infection, he was fine.
It made for a long day, but it was worth it to know that my boy was healthy and whole. We go back next year for more check ups and plan to hear more good news.
We sure are blessed by our little Ryan Douglas!