Will's Way: Chugging Along

Grab a cup of coffee and sit down because there is a lot of news around the Bartosch house. Since Will's birthday we have been even busier than I could ever have imagined and we have all types of new things to report. I thought I was so busy before Will came into our lives... now I wonder what it was that I wasted all my time doing:)
Since Will's birthday we had a 1-year old check-up with Will's pediatrician, several physical, occupational and speech therapy sessions, a couple of trips to get blood drawn, a trip to the endocrinologist and visited the Cincinnati Down syndrome Clinic. Will is up to 22 pounds and 29.5 inches long (I will always give Will his 1/2 inches because he is going to need all he can get!). He is mostly healthy and happy and keeps Ron and I smiling:)
Overall he has been doing well with all of his therapies and making good progress. Some days I wish he was progressing more quickly, but Will is my daily reminder that patience is a virtue:) He is babbling away although there are still no 'mama's' and has fun making sounds with his lips and hands. He is eating lots of new table foods although he is very finicky. He loves something one day, and won't even let me put it on his tray the next. Which is my daily reminder that Will is also a 1-year old! He is doing well with self-feeding especially when it comes to crackers and cheerios and is starting to grab for utensils and cups. He got many cool toys for his birthday and is doing great at learning how to play with them. He is especially good at putting balls and blocks into buckets and toys and really loves his Woody doll and toy camera. He continues to pound away at his piano and his drums and loves to push and pull on his truck. He is making very slow progress with drinking but we got some much needed advice today and hope to get even more in January when we see an occupational therapist at Children's Hospital that specializes in feeding issues.

Last week Will was diagnosed with a thyroid disorder. For those of you that are in the know about thyroid issues...his TSH levels are high but the other numbers associated with the thyroid seem to be normal. Although we do not yet know why this is, the endocrinologist put him on medicine to regulate the TSH levels. The doctor gave me very little good information, but I did a lot of my own research online and I will try to summarize. (So for the professionals that are reading this...don't be too critical of my analysis and feel free to correct me in the comments section:) From what I have read, when the TSH levels (the hormone that tells your body to make thyroid hormone) are high, but the levels of actual thyroid hormone (called T3 and T4) are normal, your thyroid is still functioning and producing hormones, but is having to work twice as hard to do so. A friend explained it to me this way...it is as if you are pushing the gas in your car because you want to go 60MPH, and your car is getting up to 60MPH, but the RPM's are really high because the engine of your car is working extra hard. I liked that analogy:) For kiddos birth to age 3, the thyroid has a completely different function than what it does later in life and much different than what most people think. In babies, the thyroid and the associated hormones are key to brain development and it is mostly related to metabolism later in life. So Will is on daily medicine, which is challenging because we have to give it to him on an empty stomach and then wait 30 minutes to feed him...and we can't explain this to him:( I am sure soon it will just become part of his routine, but for now it is the longest 30 minutes of Will's life!

We visited the Cincinnati Down syndrome clinic today and had a great experience. We met with the clinic's pediatrician, a social worker, an occupational and physical therapist and a speech therapist that specialized in feeding. They had lots of good advice for us and straightened us out on the many different methods we have been using to get Will to drink out of a cup. The clinic was very orderly and organized, the professionals were all very familiar with individuals with Ds and up on the latest research and very attentive to our concerns and questions. They were also very specific and to the point with their recommendations and yet very compassionate about our issues. Although we hope to go back to the Columbus Ds Clinic in an effort to help support it and improve it, we hope to visit the Cincinnati Clinic often as well! Oh, and while the speech therapist was evaluating Will, she informed us that he is currently getting 4 teeth! Two of which had emerged and Ron and I hadn't even noticed:) I was a bit embarrassed and felt really badly since I have not been giving him anything for pain and wondering why he has been so grouchy!
We are also in the process of transferring our home-based therapies to the Childhood League but we won't get started until after the first of the year so I will have more to tell about that soon.
So it has been an emotional and bumpy month for us and for Will, but we are weathering the storm. We are excited for Christmas and can't wait to see all our family and friends. We all hope you have a very Merry Christmas and hope you will say a special prayer for us as we navigate our way through our newest road bumps:)