Cameron was born on the 5th of February 1995. He was three weeks early, weighed 6 lbs. and was 18 1/2". Although his apgar scores were 8 and 9, he slept a great deal and was not eating well. After 1 week he was hospitalized, he had lost 1 lb., and had severe jaundice. He also had sleep apnea and a bradycardia (his heart rate was 95-98 sometimes lower.) It was determined he was getting enough oxygen but he could not regulate his body temperature well. He was under bili lights for his jaundice for 3 days and started formula which helped him gain weight.
For several months he made a goat like sound when he was breathing or eating. We suspected something was seriously wrong at around 3 months. His eye contact was poor, yet he seemed to hear everything we said and would even smile while not looking at us. He also had developmental delays. He has been constipated his entire life and this began as a baby. His weight and height when he was a baby were always in the negative percentiles. Head circumference remained at 50th percentile.
We were sent us to Lucille Salter Packard Children's Hosp., Stanford CA, to see many different specialists. He went through just about every test you can imagine. They were not looking for anything genetic at first due to his normal features. Finally a geneticist confirmed Cameron had an Interstitial Deletion of Chromosome 3, missing bands q23-25.3. He had a severe serum zinc deficiency and was on a zinc supplement for 2 1/2 years. This really increased his appetite. To our amazement his 4 year checkup showed he was in the 100th percentile for weight for his age. He also has dolichocephaly (long skull from front to back of head), long eye lashes (dad has slight dolichocephaly and long eye lashes, so the deletion may not be responsible), a ridged metopic suture, hypertonia (tight muscle tone) in his legs and hypotonia (low muscle tone) in his facial area. Cameron has also had problems with vomiting when he gets sick and when he eats (this has gotten much better over the years.) He started crawling at 12 months, but could not sit until about 14 months due to low muscle tone. He started walking at 20 months. Cameron also crossed his right eye more than normal and was wearing farsighted glasses at first in hopes of correcting the lazy eye. He also has a trident hairline in the front which makes if difficult to get a good haircut without having two bald spots on the sides.
At 1 1/2 years he had both umbilical and inguinal hernias repaired. They found that one testicle had never formed. At 2 1/2 years he had ear tubes put in his ears. Cameron has sensory integrative disorder. He has problems with certain loud sounds, different tactile sensations, the way some foods look or feel, poor balance/coordination, speech delays and poor attention span. He craves sensory input and does many things throughout the day to get it. He spins around on a sit-n-spin and likes to use swingsets for hours. He still rides his bike with training wheels although I think with lots of practice he could do this without them.
Cameron is a very social and lovable little guy. He loves to be tickled, snuggle, and get massages. His energy level seems a little lower than normal and he is cautious about the things he does. He is still not talking except for the words mama, dad, yes, and a few others. He makes a few vowel and consonant sounds. He has spoken several other words in the past and then never repeats them. His receptive language seems almost age appropriate. He seems very bright in some subjects yet lags behind in others. At 5 years he knew about 120+ words in sign language and used them to get what he wanted. Earlier he had a communication board and pictures that he used along with signs but then graduated to a computer that talks for him. He also dragged people around to show them what he wanted and still does this on occasion when someone doesn't understand him. He has a stiff gait when he runs. He loves to watch certain videos on TV, be read to and play on the computer. His favorite thing for years was a large plastic dinosaur that he took everywhere. He fed it, liked to put diapers and band aids on it and even growled at it. He loves books too, especially train books and magazines. When asked to pick out any toy he wanted from Amazon.com as a gift, he picked a train magazine subscription. At first he was trying to check the mailbox every day to see when it would come. I had to explain that they only came every 3-4 months. He was very excited when it actually came. He also likes any books that have to do with the medical field, ambulances, fire trucks, cars, home improvement projects (especially garages), etc. He seems to be very interested in reading about the human body. He also loves Gamecube, Ninetendo, DS, and Wii games. We have a hard time prying him away from them but it works wonders for incentive to behave in school so we use it to our advantage!
By 8 ½ years, Cameron had had two Strabismus surgeries and his eyes were no longer crossed. He did not need to wear glasses for several years but at 13 one eye is getting a bit lazy again and is starting to cross so he needs glasses again. He passes the eye test yet the vision in that eye is 20/100. He uses signs to read the eye chart and I interpret for him to the doctor. His sensory problems have lessened a great deal. He has apraxia and signs as if he is apraxic with a lack of sentence structure, yet he gets his point across real well requiring us to guess some of what he says but we have gotten fairly good at it. On occasion he will use sentences but mostly only when he is prompted to do so. He often uses a 3-4 word combination of signs, sometimes more. He has motor skills problems and this limits some of his signing but he has improved a great deal over the years. He also points and uses a laptop computer that talks for him to show wants and needs. He is also writing us notes about things he wants to talk about if we cannot figure out what he wants to say. He doesn't always spell long words correctly but gets them pretty close. He has great difficulty with math skills (he can count, but addition and subtraction by himself is difficult). He does use a calculator fairly well on his own. He is a fairly good reader using sign language although his non-verbal communication is holding him back. We believe he could read very well with better signing skills. I would guess he probably knows upwards of 500 signs currently. His zinc level is almost low again requiring zinc supplements. We will have to watch this level thoughout his lifetime. He is beginning to run more smoothly than before with practice from PE in school. He also has a mild Dandy Walker variant, which we didn’t know about until a couple years ago. He did not have hydrocephalus which is common with Dandy Walker malformation and did not require continuing care for it. The Dandy Walker variant is more than likely responsible for Cameron's balance issues and his handwriting difficulty. Both of these things have greatly improved over the last 5 years. He has some ADD type symptoms and we were trying the new non-stimulant drug Strattera to see if it would help but it caused him to vomit. We also briefly tried Ritalin and several others and we found that they had an opposite effect on Cameron. They rendered him unable to sit still in class and he couldn't sleep either. He has been on ProEFA for several years, which is composed of essential fatty acids. It contains Omega 3 and Omega 6 along with DHA and we have seen tremendous results with his handwriting skills since he’s been on it. He also seems to have more of an awareness of his surroundings and is more likely to try new things. I took him off for 2 weeks a few summers ago and saw a huge regression in his handwriting.
At 9 years we fought to get Cameron back in a hearing impaired school/class regardless of the fact that he is a hearing child. He spent two years in the hearing impaired school when he was 5 years since he was non-verbal yet they believe he should go to a regular classroom with other children who had mild learning disabilities. They tried to integrate a computer that would talk for him into this classroom, yet the teachers were somewhat defiant to use the device even though it was written in his IEP. We spent the entire school year of 2003-2004 battling over his inability to communicate with the teachers and their lack of any sign language ability (Cameron is primarily a signer). Even if they did use the computer we began to realize that using only a computer was not enough to communicate effectively. Cameron was completely isolated during subjects that you could not possibly integrate a computer into, such as, P.E., music, art, lunchtime, etc. We are very happy about his return as he had been very frustrated those two years and had cried and asked us (nearly every morning) to go back to the signing school. The second year in the non hearing impaired school had been a distressing year and we went to many IEP meetings and eventually had to get a lawyer involved in the process. They gave Cameron some compensatory time to teach him more sign language but it didn't last very long since the hearing impaired school is a year-round school and started up a couple weeks after the regular school year ended. Since Cameron has been attending the HI school, his communication has blossomed and his attitude towards school has changed dramatically. He is very happy. On his first social studies test in the new school, he got a 90% and he didn't even study. It was very difficult for Cameron to learn when he could not communicate with the teachers. He would answer questions correctly in class only to be told that he was wrong because his teacher did not know what he was signing. He is still receiving quite a bit of speech therapy through the school so we stopped private therapy a few years ago. He also took Tae Kwon Do for about two years and had shown a great deal of progress. The studio gave him some one-on-one instruction with an adult student part of the time and it was great for his motor skills. He earned his black belt. We are so thankful to have such a great son regardless of his differences. He seems to have a cute sense of humor and is well liked by the teachers at his school and most children really love him as well - especially the girls!
Cameron is now 13 and will be in middle school next year along with his younger brother. He will continue in a hearing impaired class. Soon he is getting a device that he can carry around called the Cyrano in hopes that he will be able to speak with more teachers and students in middle school. Cameron will be able to take pictures with this small hand held device so he can use the pictures to talk about real life things. Previously he had clip art to do this. This device will also be able to speak for him. He will be able to write on it with a stylus and do many other activities as well. We are very happy with his progress.