Make A Child Smile

Aschdon's Story
written by mom Kenya

Aschdon was born 7 weeks early weighing only 3lbs and 13.9 ounces. For being a preemie he was developing at a normal rate. However he was never one to cry if he was hungry or needed changed. We had to have him on a schedule for feeding otherwise he would have never eaten.

When he was 6 months old he developed his first pneumonia and that is when we noticed a big change in him. From birth he had always had a tremor in his hands but after his first pneumonia he was so much weaker.

Aschdon's weight gain slowed down, he was very floppy and got tired easily. He started to pass his milestones without doing them. The doctors told me that it was nothing to worry about as he was a preemie and he would catch up in his own time.

At 15 months I brought him into a "specialist" because he was not gaining weight (he only weighed 12 pounds), he could not roll, he could not sit himself up, he was not able to crawl or even bear weight on his arms or legs. He was diagnosed with the failure to thrive (due to his lack of weight), developmental delays and hypotonia (otherwise known as floppy baby syndrome). After researching it I realized Hypotonia was not a true diagnosis but just a symptom of a bigger problem.

A year later we were able to get an appointment with the Muscle Clinic, at this time Aschdon was 2, only saying 1-2 word sentences and was only 19 pounds. They took about 5 minutes before they told me that he most likely had Spinal Muscular Atrophy Type II (SMA) but they had to do the blood test to confirm it.

A few months later we got the call saying that is what he had. From there I have worked on trying to help my son make the most out of his life to the best of his ability. When he was 2 and 4 months he had tubes placed in his ears and that enabled him to start speaking and he is now above his peers for vocabulary. At age 3 he got his tonsils out because they were so large it was blocking the back of his throat so he was unable to swallow. In October of 2002 he had a g-tube placed and a nissen done (a feeding tube and a stomach wrap in order to prevent reflux and aspiration).

In May 2003 Aschdon was life-flighted to Denver's Children's hospital. He had a glucose level of 39 (which I was told that he should have been in a diabetic coma due to the count) and his white blood count was over 22,000. All we could figure was that he had an unknown infection. He was released with in a week and we now have to watch for signs of low blood sugar levels.

In August 2003 Aschdon had surgery on his legs. The surgery helped relieve the contractors in his hips and his knees, and to help his legs turn the correct way and they fit his hips in to the sockets better.

In August of 2005 Aschdon had titanium rods put in his back to help correct his kyphoscoliosis. We opted for this choice as this will enable him to continue to grow until fusion is needed. He has to go in every 4-6 months to have the rods lengthened. Aschdon also goes in every 3 months for IV bone medication to help increase bone mass as he has severe osteoporosis. In January of 2006 Aschdon was diagnosed with hypothyroidism and now takes medicine on a daily basis to help keep the levels where they should be.

Aschdon also has gone to the eye doctor and we found that his dyslexia is partly caused because his eye muscles are very weak and are not working together. It is called convergence insufficiency. He now wears glasses and he says he is seeing a lot better now.

Aschdon has had more than 15 pneumonias, countless ear infections, strep, he catches a lot of things that go around but even with all of his problems Aschdon is a very happy child that enjoys life. The only time that he is unhappy is when he is sick. As of the present he uses the cough assist, a suction machine (when sick), a pulse ox, the BiPAP and his feeding tube. He has a power wheelchair that the hospital in Utah helped us get. He also has leg immobilizers, wrist splints, and AFOS.

At present Aschdon goes to a school 5 days a week where he loves interacting with the other kids. He is homebound during the flu season however to help cut down on illness'. He has wonderful classmates that make cards and write letters to him while he is not at school.