Physiatrist Appt

A couple of weeks ago, Hayden had a follow up appointment with his physiatrist (rehabilitation doctor) at Gillette Children's Specialty Healthcare in St. Paul, Minnesota. Our appointment was at 12:45 pm and since we had heard that there was a lot of road construction near the cities and that we could be delayed as much as an hour, we decided that we needed to be on the road at 6am. My mom spent the day with Nicholas so we didn't have to take him. He would have been bored out of his mind. Not to mention that he has never spent more than 2 hours in the car at one time. Eight hours in one day would have made for one grouchy Nicholas. Besides, he had a wonderful day with grandma. They read books, played with blocks and puzzles, and drove the Spiderman ATV around the house. Since Nicholas was taken care of, Tony's mom decided to go with us to MN. We are lucky to have such wonderful grandmas. We don't know what we'd do without them!!

We met Tony's mom at the Kum and Go in Clear Lake at 8am. I filled up my Kum and Go cup (free refills for all of 2009) with a yummy cappuccino. Thanks for the cup, dad! Once we all had beverages, we hit the road. Donna brought donuts (I knew I loved her), but I had to wait to dig in because Hayden needed to eat. I learned a lot about tube feeding him in the car from our Detroit trip, so I had everything I needed. Thirty minutes later, his feed was done and I got to finally induldge in a wonderful glazed donut that my waistline really didn't need.

Hayden "chatted" with us along the way. He says "da da" alot and is now making a lot of different vocalizations, but no real words. We all had a great time talking with him. What an amazing day it will be when we get to have a real conversation with him. Of course we dream of the day when he will sit on his own and even walk. How sad it would be if he never was able to do those, but to have a real conversation with him...how amazing that would be!! We didn't run into any construction along the way, so we arrived pretty early. We checked in hoping we'd get in early, but no such luck. Our first stop, as always, was height and weight.

Our last appointment was the day before Hayden was diagnosed with infantile spasms and about 4 days before he got his G-tube. Because of the feeding tube, he had gained 3 kilos in 4 months which is wonderful. Hayden's height is always a little different every time it is measured since he doesn't straighten his legs and isn't always cooperative when someone tries to straighten them. He was measured at about 31 inches. We were taken to an exam room where we went over everything with the nurse that has happened since we were there in February (infantile spasms, feeding tube, shunt revision), update his medication list, update how he is doing in therapy, and to let the nurse know of any questions/concerns that we wanted to discuss with Dr. Deshpande. While we waited Tony and I played with Hayden who was having a great time playing with the paper on the exam table. He loves the noises that paper makes. Hayden was laughing and having a great time when a resident came in and said that the doctor was going to be delayed a few minutes. The second Hayden heard this stranger's voice, he stopped moving and his left hand became clenched in a tight fist. He does this whenever he becomes uncomfortable. We reiterated to the resident everything we had just told the nurse, which we were going to repeat to Dr. Deshpande when she examined Hayden. A short time later, Dr. Deshpande came in and began her examination after we caught her up on Hayden's adventures since our last appointment. This time she really didn't focus on anything other than his legs. Hayden wasn't too pleased about this and let her know. He doesn't ususally cry during an exam, so she must have really staighted out those hamstings. She agreed that his AFOs (ankle braces) were too small and gave us a prescription for some new ones. She also said that his hamstrings are still pretty tight and that she really wants us to work on them, especially with the stander one of his therapists is letting us borrow. If she doesn't see enough improvement when we come back in October, Hayden will be getting Botox injected into both hamstrings. This is an outpatient procedure that requires sedation to make it more comfortable for Hayden and to help him not remember anything. The Botox will paralyze the muscle(s) that are too tight and to allow the other muscles to work the way they are supposed to. We have read and heard good things about it; however, we are going to do everything we can to spare Hayden from more poking. Poor guy has been through enough!

On the was home, we stopped in Mason City to see Tony's grandma. She had broken her hip a few weeks earlier and was at a care facility to practice her mobility. She progressed wonderfully and was going home the next day. Yea, great-grandma! She saw us pull in and raced down the hall to get to Hayden. I've never seen anyone with a walker move so fast. When we got back to her room, she spent about an hour snuggling with Hayden. What good medicine for both of them! We wished we could stay longer, but we needed to get home and get Hayden fed one more time before bedtime. See you soon great-grandma. We miss your visits.