Tuesday night we left for our first visit at Gillette. We saw Dr. Gormley, who is a Physical Medicine and Rehabilitation Physician. He is who we see now since Dr. Ramsey moved to Oklahoma City. I'm not sure if Blank is working on bringing another provider who specializes in this area to Des Moines but as of right now the two closest doctors recommended by Dr. Ramsey are Dr. Gormley in St. Paul and another doctor in Kansas City.
We left around 6pm after supper and baths. We put Ben in his pajamas and he slept the whole ride up. He was pretty dazed when we woke him up at 10pm in a strange place and got into our hotel room. Then he was awake for awhile checking out the place but we all eventually got settled in.
We got up and had breakfast at the hotel and headed over to the clinic which was super close. It was very easy and low stress.
The appointment itself went very well. Dr. Gormley was amazingly kind and spent close to 45 minutes in the room with us. He took time going over Ben's history and explaining all kinds of things we could see in the future.
He said he was 100% sure Ben would walk. No problem. Like I said in my last post, my heart knows this but it's nice to have a smart doctor tell you too! He used terms like "high functioning" and "productive life" which was great to hear.
We did also get a definitive diagnosis of Cerebral Palsy. We knew this would come but it still stings a little to hear it. He meets all four criteria for diagnosis though: Brain Injury. It happened early in life. It is static (not getting better or worse). And it causes physical impairment.
There is nothing about CP (Cerebral Palsy) that talks about cognitive function. Often there is cognitive impairment related to CP but there doesn't have to be and only time will tell. Ben's speech is delayed but Dr. Gormley seemed encouraged by his cognitive development at this point.
He also talked about how kids like Ben will have a "stairstep" pattern. It describes EXACTLY what we see with Ben: he won't do something for a long time and will be "delayed" then all the sudden will start doing it. Then continue at that level and not make progress then start doing something new. We've seen it over and over with Ben - sitting up independently, bearing weight in his legs, and crawling/scooting.
All in all we had a great visit. We will follow up in about four months. We talked about future treatments including Botox to relax his hand muscles and the possibility of surgeries in the future due to problems caused by his hypertonicity (tight muscles).
And as an added bonus after our appointment we got to stop and see my friend and freshman roommate, Stefanie! It was so fun to get to see her and nice to catch up for a little bit!
Moving update and our empty house
10 hours ago