April 2001 Update

Yes after many tests Samuel has Osteoporosis. We were very upset but what can you do? Perhaps it was due to his difficulty in eating or his obvious inability to walk. Walking puts weight on bones strengthening them.

We probably will have to get a button to get more food in to him. This is a small tap connected to the stomach via the belly button so we can get much more food in to him. The tests showed he had difficulty swallowing so he does not like eating very much. As a result he is skinny. (Pretty much what we knew) The tests were valuable in seeing where he was at.

We just need to book him in. It is a short procedure but it is one more thing Karla has to look after. After all you have to keep it clean for obvious reasons.

We have another friend who has the same thing. He seems to be growing well although his disability is not quite as serious. Still this is not the norm so it is very difficult for parents seeing other kids eating, drinking and running around.

Our little Aidan is almost two and is perpetually in motion. He is has no problem eating other than the normal child stubbornness.

We however are not down and out as something can be done. Let me tell you straight that if it were not for our relationship with God and the support a church community provides I would be an alcoholic nervous case.

We are can not live alone. If you are reading this please do not allow your problem to isolate. Although people with out kids with Cerebral Palsy have little idea they can provide us with friendship and support. Do not get angry at them because they do not understand as we all were there before.

By the way his treatment with baclofen is been slightly reduced as Samuel kept getting "high". This has also caused possible seizures. He used to have them when he was quite young. It is a potential side effect of the drug. He sometimes laughs all night and does not sleep for days eventually crashing out quite suddenly. The laughing is funny at the beginning but believe me after several days it is worrying.

Several people have said. "Can I have some?" after being told he is slightly high. Fortunately after reducing from 3 per day to half twice and one in the morning it is better. It sure helps his stiffness although not entirely.