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Camryn's Progress


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Hello Everyone. Thank you for coming to read about my progress...

I am currently diagnosed with having cerebral palsy (spastic triplegia and hemiplegia), epilepsy, microcephaly, cortical vision impairments and global developmental delays, with mental reatrdation.

My head circumfrence is below the 5th percentile. It is due to slow brain growth, which is due to HIE (hypoxic ischemic encephalopathy.) HIE is a fancy medical term for "brain damage, due to lack of oxygen."

Because I have brain damage, I suffer from epilepsy. My seizure patterns are pretty stable at this time. There is always the potential for my seizure patterns to change, because as I get older, my brain changes, causing the abnormal electrical activity of it changes, also. I currently have seizures called MYOCLONUS. These type of seizures occur on a daily basis, usually more when I'm tired. When they happen, I have a quick jerking of my upper body and my right arm. They don't hurt and they don't seem to bother me at all. In the past, I have tried the drugs Tegretol and Klonopin to help stop my seizures. They worked "ok" for a little while, then over time became less effective. Today, I am taking the drug Depakote, which gives me pretty good results. I still have frequesnt jerks, but nearly as much if I were not taking medication at all.

My vision status has improved greatly since I was born. When I was born and for about 6 months after, I was considered to have severe cortical blindness, especially of the right side. I had a difficult time making eye contact with people and seeing objects placed in front of me, unless they were first brought to my direct attention. These days I still have some cortical vision impairments, my right side peripheral vision is still a bit sluggish and my left eye seems to have developed a strabismas, which is a "lazy eye," just like my Mommy has! The doctor says one day I can have corrective surgery to the eye. I have a tendency to keep my gaze downward when not watching T.V. or playing with my toys, but that too has improved since I started going to school every day. I have vision therapy twice a month with a special sight therapist. He says I am doing quite well. I have a slight depth perception problem and I REALLY need to work on trying to make better and more frequent eye contact with everyone!

My left hand, at this point, works pretty good. I can play with toys, feed myself pieces of food and play with water! My left hand does suffer delays in fine motor skills. I am almost able to pick up pieces of food with two fingers, instead of my whole hand. I have lots of trouble eating foods that have too much texture. I do best with foods like cottage cheese, yogurt, puddings and grilled cheese sandwiches. I still use a bottle for drinking, but I do practice everyday, drinking from a cup. I do more "playing" with the liquid than I do actually drinking it.

I have weakness to my right hand and leg. My right hand doesn't want to do what I would like it to do. I don't ever try to hold or play with things with my right hand. I have been working hard on those skills with my therapists. But, it just doesn't feel "right" to use. Luckily though, my right hand and arm are strong and coordinated enough to support me, enabling me to crawl.

Unfortunately, I'm not able to walk yet. I get around on the floor with bunny "hop" motions. I am very fast too! I have reciprocal movements of my arms but not of my legs...yet. I move them along at the same time, kind of pulling me knees forward. It took me until I was almost two years old before I would go beyond the living room and explore my entire house! I spend a little time each day standing in my walker. I don't walk much in it yet, but one day I'll get the hang of it. My legs are very strong, but due to my c.p., I don't really know how to take steps forward...left, right, left, right. Also, I have a problem with my heel cords (achillies tendons.) They are very tight and cause my feet to point downward. When I'm stood on my feet I have a tendency to stand on my tippy toes...unable to stand flat footed because of the rigidity in my heel cords. I had surgery to both my legs on May 14th, 2003, to help loosen my tight heelcords and hamstrings. It has really worked well for me. I can easily get into my AFOs now and really have an easier time in my gait trainer. Although I have had an increasing problem with my right ler rotating inward, it really get's tough to try and walk. We'll have to work on correcting that, soon.

I take the medicine Baclofen, to help relieve some of the tightness in my legs. I also wear AFOs (foot/ankle/leg orthotics) to keep my feet in a flat 45% postion. My Mom and Dad give my legs a good daily stretching, to try and keep them as loose as possible! In February of 2001 and 2002, I underwent general anesthesia to have Botox injections to my calves and hamstring muscles. Afterwards, they applied casts to both my legs. I had to wear them for three weeks to help stretch the muscles. After their removal it was much easier to apply my AFO's. But, unfortunately the effects were minimal and it didn't help me much. That's why we decided to undergo this most recent release surgery. The problem with my legs and feet will never go away, but luckily there are many theraputic devices and procedures available to help ease the problem.

I have really good, strong trunk control. I'm able to sit by myself in a "W" position and play with toys. It took me until I was about 22 months old, to be able to sit in this position. While "W" sitting I can reach my toys and move around easily, but it really isn't very good for my legs. My physical therapist hates to see me sitting that way! So these days I sometimes wear "knee skis." When applied, they let me sit on my knees, but they keep me from being able to bring my legs too far out to the sides.

I was 13 months old before I could sit in a seated position, without falling over. I can get into a seated position on my own now, but I usually don't do it much. But these days, with my long leg casts on, I don't have much choice, since I can't bend my knees. I was about 15 months old before I no longer had a problem rolling from my back to my front. Now I roll both backward and forward without much effort.

I was enrolled in the State of Connecticut's Birth To Three Program, for three years. Now that I am older than three, I go to full time public school. I go to a special needs school, five days a week. I LOVE going to school every day. It has really helped me to see that there are other people and things outside of my personal environment. I notice "things" more since I started going to school. At school I have fun and receive physical, occupational and speech therapies.

I've had many tests since I was born. There were numerous EEG's, some were basic sleep EEG's about 1 hour long. Then there were a couple of Video EEG's, which were each 6 to 8 hours long. Also, a few MRIs too. I have regular blood draws, to check my Depakote levels, too.

Today I weigh 55 pounds and I'm 49 inches tall. I'm a big girl, (just like my daddy!)

This used to be one of my favorite toys to play with....

These days I like to play with certain "lights and sounds" toys. I like to touch the buttons and listen to the music play. I also have a few favorite books that I like to look at and turn the pages.

I LOVE to watch T.V.!! Blues Clues is my absolute favorite show of all time! I also love to go for long walks outside and play in the water

Evaluations show I currently function at about a 9-12 month old level.

Please visit often to read about any updates on my progress.


Thanks so much for reading all about me!

Love Camryn

"Dancing Queen"