Adam needed a new wheelchair. The one we had was lacking in several areas. We wanted one that would be customized to meet his needs. The Physiatrist, Dr. Dabrowski, recommended we go to a "seating clinic" at Children's Hospital in Detroit. We went to the clinic two days after getting home from Florida. A representative from a medical supply company and a Physical Therapist from the Rehab Department met us. After the clinic I asked if we could see the Rehab Department. Amy, the PT, took us on a tour. It was very impressive. I explained Adam had been receiving therapy at St. John Hospital, but we felt there was not enough focus on the needs of children there. We would like to try bringing Adam to Children's Hospital for therapy. Amy said she would like to be Adam's therapist and would let us know what openings she had in her schedule.
During the second week of February we started therapy at Children's Hospital. Amy would be Adam's Physical Therapist and Angela would be the Occupational Therapist. The therapists and facility, we hoped, would be better prepared to deal with children like Adam. Amy and Angela turned out to be wonderful therapists. They have greatly exceeded our expectations. Adam thinks they are wonderful also. He has (usually) no hesitation about going to see Amy and Angela for therapy.
Adam and Amy at Children's Hospital.
Adam with Angela.
We had a wonderful baby sitter for Adam. Annie would come early in the morning and watch Adam until he got on the bus at noon to go to school. But, even with Annie, I was finding it impossible to get in a normal day at work. The doctor, therapy, and lab appointments just seem to keep coming one after another. Each Thursday Adam would have to go to the hospital for an exam and shot of methotrexate. Every other Wednesday he had to go to the lab to have blood drawn for a CBC (complete blood count). Twice a week we had therapy at Children's Hospital. Because of Adam's paralysis we were experiencing an increasing number of appointments with other specialists. Adam was now seeing an oncologist, neurologists, a physiatrist, a urologist, a gastroenterologist, and probably some others I have forgotten about. Each specialist would want to do tests. We were going in for tests like MRI, EMG, SSEP, CMG, heart and kidney ultrasounds, and more. They never seemed to end. Each week there would be a slew of appointments to keep. I kept thinking "next week has got to get better". But it never did. We were starting to realize that one of us might not be able to keep working.
At home there was also constant pressure to find enough time to do all of the exercises and therapy that would help Adam to maintain muscle tone and bone density. These included doing an electrical muscle stimulation on his legs two or three times a day as well as a series of stretching and range of motion exercises. There were never enough hours in the day to get everything done as much as I would like.
It is probably going to take a breakthrough in medical science to help Adam walk again. Something like myelin regeneration, targeted repair using stem cells, or other promising research. I think there is a reasonable chance for this. Until then my goal is to keep Adam's legs and feet in the best possible shape. If the damage to his central nervous system can be repaired he would then be in a better position to learn to walk again. I will not give up on him. Whatever it takes, I will do my best to give him that chance. As a result of my goals with therapy each day, plus all the appointments, it was hard to find time to go to work.
Adam has finally gotten to the point where he does not cry when the lab draws blood from his arm. He has gotten so brave about so many things. I know every father feels his son is the greatest. But I am going to say it too. Adam is the best. He has been through so much, and lost so much. Yet he hardly ever complains. And he has to go through things that would horrify most other 4-year-olds.
About a month ago I noticed Adam was starting to call me "Dad" sometimes. It had always been "Daddy" before this. Now he uses both. It is kind of cute, but makes me a little sad because he is growing up so fast. Hearing him say "Dad" makes him sound so old.
One night I had a dream about Adam. He was sitting in his wheelchair in our house. He was excited about something and got up from his wheelchair and walked a few steps without thinking about it. I can remember the feeling of surprise when he walked and not wanting to say anything to him to call attention to what he was doing, afraid he would lose this new ability. In the morning I told him about the dream. He told me he had a dream that he was in the space shuttle. I told him I thought both dreams would come true.
On February 14 we had Adam's birthday party at Chuck E Cheese's. Chief Ahonen and family, Captain Ken, Fran, and Annie, Deputy Chris and family, Adam's buddies Tyler, Sean, and Karen; Jeremy and Lisa, Loraine and Michael, and many others came. Adam had a great time. It is hard to believe he is 5 now.
Adam gets a little help from next door
neighbor Karen to blow out his candles.
Adam proudly holds up his gift from Chief Ahonen.
An authentic Fireman's Badge!
Another great gift. This time from
Captain Ken, Fran, and Annie.