I guess I should start off by writing that the first time I heard cerebral palsy in connection to Arthur was August 12 of this year. It wasn't too hard for me to take in mostly because I could see how fine Arthur really was and that I shouldn't be too concerned. This diagnosis wasn't needed to be a horrible thing and at least now I knew the next steps to take in order to help him. The first doctor to mention it to me even stressed to me that if it really was cerebral palsy it was an extremely mild case. I believe he said mild about 5 times before he even said cerebral palsy to me.
We first noticed something was wrong with Arthur when he was only a few months old. When he started to reach for toys and other things he would always use his left arm to reach. It only concerned us for a couple of weeks and then he started to use his right arm little by little and so we forgot all about it and moved on with life. Then when Arthur was 15 months old he started to walk and he had a slight limp and his right leg lagged a little bit behind his left. He also toe-walked on his right foot, and only his right. I wasn't concerned at first because he had just learned to walk and it seemed normal for a brand new walking toddler. My mom came to visit that next month though and she noticed the limp as well. She suggested we bring it up at his next appointment with the pediatrician and see what they thought of it.
His next appointment was at 18 months and as we had just moved to Moscow, Idaho it was also his very first at a new pediatrician's office. The doctor we saw didn't seem concerned and said that we would just watch it for the next six months and if, at his two year appointment, it was the same or worse we would discuss what to do. She assured us that it would most likely correct itself by his two year birthday and that it was normal for children to walk the way he was walking.
Well his second birthday came and he still was walking that way except now it was more pronounced and it was worse. He didn't let it slow him down at all but he sure had a difficult time keeping from tripping over his own feet. It was hard to watch him with all the other little boys his age at church and see how hard he tried to keep up. He didn't let it slow him down at all, he would just bounce back up after falling and keep on going. Arthur has a lot of determination to do everything he wants to do.
At his two year appointment we addressed it with the pediatrician again. This time the doctor referred us to an orthopedist at Shriner's Hospital in Spokane, Washington. They told us it would most likely take a few weeks for us to be able to get in to see them but they would call and get it set up. It only took one week, on March 12, before we heard from them and they just so happened to have an appointment that was only a little over two hours from the time they called. Spokane is about a 90 minute drive from Moscow and so we knew we could make it if we just loaded up and left. We rushed out the door and made it to the hospital at the appointed time. At the appointment we discussed various things with Arthur and by this point in time both Tim and I had forgotten all about the way Arthur used to only reach for things with his left arm. So when a question came up about his right arm we said he used it fine and never had any problems. They diagnosed him with a tight Achilles heel tendon and just taught us some stretches to do at home and gave us a little boot splint that he could wear to bed at night to help stretch the tendon and muscles.
Within another couple of months we started to see something new. Arthur was beginning to hold his right arm at an almost perfect right angle when he would run and even when he was just walking at times. He would hold his right arm close to his body, especially when he was running, but his left was always much more loose and free in movement. However, by the time we started realizing this it was about the time to move to Denver. So we waited until we arrived in Colorado and then I set up an appointment with a new pediatrician. He then referred us to an orthopedist. This is the same doctor who first brought up cerebral palsy with me and he helped me get signed up for a clinic with three other doctor's so they could also see Arthur and talk together to see if they all agreed on the diagnosis. The official diagnosis was right-side hemiparesis, which means that his right side is weaker than his left and he has reduced muscular strength on the right side as well. His muscles are tighter on the right and that causes them to be weaker.
The clinic is where Arthur was able to meet with another orthopedist, a rehab specialist, and a neuro surgeon. All three agreed that it was cerebral palsy. The neuro surgeon talked about Arthur having a MRI to look at his brain and see if the cause was from a in-utero stroke or from a deformity in the brain while it was developing. The rehab doctor talked about a possibility of injecting botox into his ankle in the future as it helps to loosen the tendons and muscles enough to stretch them more. Finally the orthopedist talked about a stretching cast that Arthur would wear during the night and for naps.
For now we decided not to even worry about botox since it is a very mild condition Arthur has. That option may come up in the future if the tendon or muscles become too tight that stretching isn't even working. Most likely that possibility will occur because of a growth spurt and if we aren't completely religious with doing his stretching exercises. The MRI we decided to put off for now as Arthur will have to be put out in order to have it done and we want him to be a bit older before we do something like that to him. We will probably make a decision about when to do it at his next appointment in about six more months.
As for the stretching cast we decided to move forward with that. At the beginning of October we went in and got his cast. They just wrapped his leg for the cast, cut it off, and made it into a splint that could be taken on and off. He actually liked most of the process, except where they used the little saw to cut the cast off. He didn't like the noise so much. When the nurse asked him to pick a color out for the cast, I showed him the different colors. The first was red and he pointed to it and said "Lightening" as he associates that color with Lightening McQueen. Then the next color was a light blue and I asked if he wanted blue like Thomas, as in Thomas the tank engine. He immediately jumped on that and kept saying Thomas, there was no red option after that. Now he calls his cast "Thomas" and actually requests it quite often.
Since he started wearing his Thomas boot, as we call it, he has started walking much better. There isn't much toe-walking anymore and the limp is almost completely gone. However, his arch is starting to collapse now as he turns his foot in as he walks, which is a whole new issue. The rehab doctor he goes to see now prescribed him to get a SMAFO, Supra Malleolar Ankle Foot Orthosis. This is a boot that will be worn during the day and will give him the arch support he needs and help him from rolling his foot in as he walks. However, they did warn us that he will most likely start walking on his toes a bit again. This will just be an issue that he will deal with for the rest of his life.
In the months since his official diagnosis he has also been to physical therapy several times and occupational therapy twice. We decided that since he uses his right arm so well and just as much as his left, just for different things, that we would not worry about occupational therapy for now. In the future we will revisit the option and go from there. He was having physical therapy for his leg once a week for about two months straight but it was starting to become a little much for Arthur and so we have talked with his therapist and will be decreasing it to about once a month. He really loves his therapist and asks for her often. He tells us that she makes his leg feel better.
For the most part, the cerebral palsy hasn't done too much to change our lives other than Arthur had a lot of doctors appointments for a few months which a bit of a stress on me. He also deals with a lot of pain which causes other issues. If he is hurting and something happens to make him upset then the tantrum becomes way worse than it otherwise would be. He often wakes in the middle of the night too, either because of pain or from startling awake from random twitches and jerks that occur while he is sleeping.
There is still a lot for us to learn and figure out when it comes to Arthur but we are really trying to understand and work with him. I think the best part of the diagnosis has been knowing what I can actually do to help him. The worst part is not being able to make him completely better. I watch him at times and wish I could just take the pain from him and help him to fully understand what is happening with him. Now that he is learning more words and can communicate more it is beginning to become a little better but that doesn't make it much easier. I'm slowly learning how to better deal with his tantrums and his pain. It's a slow process but we are figuring things out. We feel very blessed knowing that he has such a mild case of cerebral palsy. We are just so grateful to have Arthur in our lives as he truly is a joy to us. He has such a wonderful personality and spirit.
This is at Arthur's first orthopedist appointment. He loved playing with the ball and wearing the gloves the doctor gave him.
Arthur waiting for his cast to dry before they cut it off to make his Thomas boot.
The doctor let him pick out a toy from the toy box and he chose these silly purple glasses. He thought they were hilarious.
Arthur showing off his boot. I put one of my socks over it so it doesn't scratch the wood floors when he's walking around the house.
He really loves it, at least most of the time. There are nights where he doesn't want to wear it and fights it tooth and nail.
