This morning I got up before six and ran eight miles (A good run helps to clear the cobwebs from my head and prepares me for the day.). After I finished stretching and changed my shirt I began getting my sons out of bed. My wife, Alice, beat me to the shower, so I helped Matthew and Patrick change their clothes, take care of "business"and got them cereal for breakfast. By the time I had the boys' medicines and milk ready Alice and I changed roles. I took my shower (Having already sustained numerous verbal assaults about how much I stunk and how sweaty I was.) and Alice took over helping Matthew take his medicine and making sure they both brushed their teeth. By eight we had everyone packed in the van and started our trip to Springfield, MA.
Today we had appointments at Shriner's Hospital at their neuromuscular clinic. Two days before we had seen the pediatric pulmonologist in Portland, so we collected the notes from that visit. We pass all information around between the three clinics the boys visit and their local specialists. We try to keep all the boys doctors in the loop, so we fax, mail or e-mail reports and notes regularly. As often as possible we attend all appointments together. The boys' doctors notice and it saves forgetting to tell each other something. Besides, we are both their parents and need to keep up with our boys' care as a team.
It is a three hour ride from Maine to Springfield, MA. Today was not typical due to construction which delayed our arrival by an hour. What was typical was the miles of slow moving traffic for about forty feet of "work"...Translation: about eight guys leaning on equipment and drinking coffee while watching the cars crawl by. Thank God for cell phones, as Alice was able to call ahead about our delay. Matthew and Patrick are used to traveling and bring their game boys, I-pod and books for the ride. I am not a patient driver and have had to heed Alice's threats to remain calm or "else", but today there were no alternatives. There's nothing like driving ten feet, stopping for several minutes and then getting up to fifteen miles per hour for another forty feet to make me a bit irritated. Exits on the western end of the Mass Pike are few and far between and I had to accept the fact that I was going ten miles per hour for the better part of seven or eight miles. At 12:30 we arrived at the hospital for our 11:30 appointment.
As I got the boys unloaded from the van Alice went to the registration desk to get checked in. From there we went directly to the X-Ray department. Shriner's role in Matthew and Patrick's care is to monitor their orthopedic health and intervene as needed. In January the surgeon became concerned with Patrick's back. The X-Ray taken at that time seemed to indicate kyphosis (Leaning forward spinal curve), not scoliosis. Due to the careful balance between respiratory ability, bone density and curvature of the spine the doctor said we needed to watch this carefully. He is very cautious and told us he has seen several cases where respiratory function was too weak or the curve too great making intervention too dangerous. We returned in May and those films looked better, so he told us he would check every four months bringing us to this visit. The nurses recorded the boys vitals and we went to the X-Ray department. The clinic has a new process which now makes X-Rays in a digital format and the technicians struggled to remember all the nuances in making it work. As soon as Matthew was finished I took him to an exam room to wait for the doctor. Patrick had to have his lateral views done three times and was brought to another exam room a short time later with Alice.
The surgeon visited Matthew first. Matthew has been through all this many times before and has endured heel cord releases and his spine was fused three years ago. This visit the doctor checked his X-Rays to ensure everything looked good and we discussed his respiratory function, medications and how Matthew was doing both at home and school. After the doctor left we spoke with the physical therapist about equipment needs and other concerns. Matthew's splints needed adjustments and we would need to go to the orthotics department later. The social worker came in next to talk about resources available to begin looking at post high school support such as Vocational Rehab and college disability services. The social worker was impressed to learn Matthew was doing volunteer work two days a week in Senator Collins' office and I assured her we were looking at options to combat social isolation and preparing Matthew for college and later employment.
Patrick was in another room so Matthew and I squeezed in to wait for the doctor to come see him. Patrick's X-rays were in his file on the door, so I pulled them out and looked them over. He has very little scoliosis and his kyphosis seemed even less than in May making me wonder if he was just leaning forward too much for his January X-Rays. About the time I put the films back another doctor came in to speak with us and took the X-Rays to the orthopedic surgeon. The same people came to see Patrick's and he also needed to visit the orthotics department as he had outgrown his splints. The doctors came back in and said they were pleased with Patrick's X-Rays and it looked like there was little or no change, so the concern for surgery seems to have past, at least for now. The doctor wants to see the boys in four months mainly to monitor Patrick's back.
Because we arrived so late we didn't have time for lunch. The boys were pretty good about not complaining although I knew we were all getting hungry (I know I was!). While I took Matthew to have his splints adjusted, Alice and Patrick got something to eat. The technician marked the splints for trimming and bringing them in a bit as Matthew has lost weight (Some of it is muscle atrophy.) and we went to lunch while the work was being done and Alice and Patrick went to have casts made for Patrick's new splints. Once Matthew and I finished a light lunch we returned to the orthotics department. Patrick was almost finished with casting and Matthew's splints were also ready. By the time everything was finished it was 4:30. Most of the clinic staff had left or was leaving so we couldn't make an appointment for our next visit. Four months is December and should be less busy!
Alice and I loaded the boys in the van and we prepared for the ride back home. Traffic was just as heavy going back as it was rush hour. The construction was stopped and we moved more smoothly on the Mass Pike, but we had trouble later on I-495 slowing frequently due to heavy traffic at major interchanges and near larger cities. We got back home safely just before eight and while I filled the van with gas Alice called for take out pizza for dinner. Not exactly a healthy eating day, but we watched our portions! It was nice just getting home and out of the van after such a long day.
If its spring or fall we are going to see doctors. Our appointments seem to run together. Next week we will fly to Dayton and then we will drive to Cincinnati Children's Hospital for two days of clinic. In September we go to our local MDA clinic and we also have a pediatric cardiologist and regular pediatrician's appointment coming up. There are times I wonder if we do anything besides visit doctors and whether this is as challenging for Matthew and Patrick as it is for Alice and me. The boys are good and rarely complain, but it is boring, they are poked, examined, questioned and led around what seems to be endless appointments. It seems to work as they are in great health, yet I see no let up in this routine. I am positive I couldn't be as patient. (Two years ago I had a fracture that kept me out of work for several days and I drove everyone including myself nuts.) We are all grateful for the doctors who care for our sons and realize many families do not have physicians who are as knowledgeable about DMD.
So tomorrow we will begin packing for Ohio and our next series of appointments and begin this routine again. This is our life and tomorrow is another day.