"My Angel Was Holding Me"

When I was 31 years old, I became pregnant with what I thought was my fifth child. We were incredibly excited, and I hoped to have a girl, as I had three boys and one girl, and my daughter was begging for a sister. As my stomach grew far more quickly than I was accustomed, I asked my doctor if he would order an ultrasound. I was 22 weeks pregnant when I went to the ultrasound appointment. "Do you want to see them," the technician asked? "THEM?????," my husband asked. We couldn't believe it. We were so excited. No one on my side of the family had ever had twins, and immediately, I began dreaming of all the things these little babies would do together. My easy pregnancy was short-lived, however, when at 27 weeks, I ended up in the hospital with pre-term labor. Hooked up to all sorts of equipment, my babies and I were monitored and drugged for 8 weeks, six which were spent in the hospital. During that time, the nurses had the hardest time keeping twin #2 on the monitor. He was a mover! "He is sure to be the first one walking," I would joke around saying to the nurses.
I was finally able to leave the hospital at 34 weeks gestation, and our twins finally came, right on time, at 39 weeks. Benjamin was born first, naturally, but twin #2, who we named Mathias, was born by emergency C-section. Both boys appeared healthy and strong, and aside from colic, they seemed fine.

Life with 6 children can be very busy, especially when you have twins. I would say that during the first year of the twins life, we were surviving. Adjusting to colic, nursing two babies and taking care of the rest of the family, we were very busy. I really didn't notice anything too out of the ordinary regarding Mathias. He did breathe really loud and the doctor called it tracheomalasia. He assured me that Mathias would out grow this condition by the time he was two. I remember thinking that Mathias must be scared when I held him, because I had to force his legs to open and wrap around my waist when I carried him. However, when he was 7 months old, he still could not sit up, not even in his high chair. He fell over to one side, didn't open his hands and only used one side of his body. One day, as he was sitting in his high chair, I began to remember some of the things I had read on cerebral palsy during my pregnancy. I ran to my computer and googled symptoms of cerebral palsy. I felt sick as I read that having a preference for one side was one of the symptoms, as well as not meeting developmental milestones. I called my pediatrician, who recommended I call Child and Family Connections for an evaluation.
Mathias was evaluated by a series of therapists, and began physical and occupational therapy by the time he was 9 months old. He was not formally diagnosed with cerebral palsy until he was 18 months old, but I knew in my heart he had CP. He made amazing progress in therapy and could sit up and crawl by 18 months. Because his muscles were so tight, the doctor recommended a muscle relaxor. He started to take baclofin. However, his entire disposition changed. He went from an attentive, outgoing 2 year old, to a spaced out, withdrawn child. His therapists noticed it immediately. He was now also receiving speech therapy, and nothing the therapist did could hold his attention. He also started to have trouble swallowing food. After lowering doses, without much success, we decided it would be better if we stopped using that medication, as the side-effects did not outweigh the benefits. I relay this piece of information, because often children with CP are put on muscle relaxant drugs at a very young age. If your child is taking one of these drugs and is having trouble concentrating or learning, it probably is the drug, and not the CP at work. Because Mathias had been in therapy for over a year and his therapists knew him to have excellent abilities for concentrating before the drug, it was obvious to everyone that this medication was a detriment to his ability to learn, not to mention dangerous since it was causing him to have trouble swallowing.
Because he could not tolerate the muscle relaxants, we chose to try BOTOX injections to help alleviate his spasticity. These injections were amazing and would last about 6 months. He made remarkable improvement in his walking after the injections. By the time he was 2 1/2, he was able to use a gait trainer and then a walker. At three he no longer qualified for home-bound therapy and entered the school district for his therapy. We also brought him to Easter Seals once a week for physical therapy, and I did therapy with him everyday at home.
Mathias is now almost six years old and able to walk without a walker. It is not the most beautiful walk, but HE IS WALKING! His doctor says he is a miracle, as he had been diagnosed as a quadrapeligic, and is now considered diplegic. We continue to take him to Easter Seals and work with him at home.
This past year we learned of children with cerebral palsy who had died after receiving BOTOX injections, and we have discontinued this course of treatment until it's safety can be established. Because of this, Mathias's legs have become extremely tight, and he may need surgery to lengthen the muscles.
There are other types of therapy which are being used for children with cerebral palsy. Some are very new, like using cord blood, while others have been around for awhile. I have included some video of newer treatment options that, although pricey, would definitely be worth it if it helped your child.

Cerebral palsy can affect the muscles in the body in two ways. The child can have extremely tight muscle tone or extremely loose muscle tone. In Mathias' case, his legs and arms are very tight, but his trunk, or core muscles are loose and very weak. It is important to stretch muscles which are tight and strengthen both tight and weak muscles. If a person with spastic cerebral palsy is not stretched, their muscles will become incredibly tight and even lock up. There are many ways to control this, and one of the best ways is to stretch everyday. Mathias will sit in knee immobilizers and his Nada chair everyday for one hour. After he is done, we work on muscle strengthening exercises. I use the bosu ball to work on his abdominal muscles, and for the first time in his whole life he was able to do a sit-up! This was a huge accomplishment for him, and something I never thought he would do. We also use an electrode stimulator to cause his muscle to contract and help him build muscle tone faster.
Sometimes stretching is not enough. When a child with CP has a growth spurt or gets sick, their muscles tighten considerably, and they need more help loosening them. There are drugs which can help, such as baclofin or BOTOX injections. Baclofin is a muscle relaxant drug which has benefited many people with CP. It is taken orally and can be very beneficial. BOTOX, commonly known as a cosmetic remedy to treat wrinkles, is an injection of the botulism toxin. It is used on people with CP to partially deaden the nerve which is causing the muscle to tighten. By using BOTOX, the muscle can be stretched far more easily and the child's muscles remain somewhat looser, even when walking or moving. If these options do not work, there is a surgery which will help loosen the muscles. Consistent quality stretching combined with muscle relaxants and BOTOX can often prolong surgery until a child is a teenager. In the past, children with CP had multiple surgeries. Now with the new drug therapies and consistent therapy, children may only need one surgery in their lifetime.
There are many great therapies to help a child with CP. Swimming, horseback riding and golf are just a few fun activities which can be done to help strengthen muscle groups.
I have also included some newer therapy options that many patients with CP are finding helpful. The hyperbaric oxygen chamber is a chamber which, under pressure, allows more oxygen into the bloodstream. This oxygen is able to get to parts of the brain which are damaged and help in the healing process. Usually 40 treatments are necessary to attain a permanent benefit. It does not cure CP, but helps rebuild damaged brain tissue. It cannot replace dead brain cells however, so it is not a cure. It can help a child make significant progress however, and therefore worth noting. A downside is the cost. It is very expensive and most insurance companies do not cover it.
The LocoMat is a therapy which is now being used on people with cerebral palsy. It helps retrain the brain how the body should walk. Using biofeedback and a robotic device which positions the body correctly and moves the legs, it shows the brain how the body should move. This is very new treatment for people with CP, but the initial results look promising.
Cord Blood use is an experimental new way to treat cerebral palsy. Very few people with CP have had this treatment, but the ones who have seemed to make tremendous prograss. View the You tube video on this page to see a child who underwent the process.

It is okay to cry. When you find out your child has cerebral palsy, you don't just grieve all at once. For me, it was, and still is a process. When I first realized there was something wrong, I was very scared. I had no idea what to expect, or what to do. Where should I begin, and how can I fix this, were all that went through my mind. Then, I went through stages of denial and guilt. All of the "what if I would have done this" ideas would flood through my head. "Could I have done anything to change this?" I would think that if we could just get him up and walking, he would take off and be just like the rest of the children. Somewhere, inbetween all of these thoughts, as well as time passing, I began to accept that things would never be as I had planned. Then, I cried. I cried for all of the times he wouldn't be able to do this or that. I worried about if he would need me and I wasn't there to help. I still worry, I still wish it wasn't so hard for him, and sometimes, I still cry. Then, I look at him and think how blessed I am. He is a miracle. He is beautiful. He has the most contagious laugh, the sweetest disposition, incredibly spiritual, and is loved by everyone who meets him. He said something that amazed me that I will never forget, and I will try to repeat what he said. One day, about a year ago, we were sitting down and he was stretching. He said, "Mom, remember when I almost died, when I was still a baby inside you? Well, my guardian angel was holding me and Ben's was holding him too." That is Mathias, and I thank God everyday that he gave him to us to teach us how to love.