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Wednesday, June 15, 2011

Finally an update....

It’s been quite a while since I have updated our blog, I have thought about it a lot but then just don’t. It’s hard to believe that on Friday the school year is over and Becca will be in 3rd grade and Ian will be in 2nd, where did the year go. This year has brought many highs and lows…some of them I have already shared while others I have not. Utah has come and gone in April, it was not what we were expecting…I started to but something together but then stopped, not sure why. Maybe just not ready to put everything in writing yet…well here it goes. While we were there, both kids went through many tests. For Becca, everything came back looking good. For Ian, we were hit with more information, on top of having a neurotransmitter disease, he also has a neuromuscular disease. What does this mean….what the wonderful MD’s in Utah told us is that his nerves and muscles don’t talk. The nerves die and because of that the muscles become weaker. At this time, we don’t know which one he has meaning that it’s progressive, non-treatable, and non-reversible. Neuromuscular diseases fall in the basket of muscular dystrophy. As you can imagine, this hit Brian and I, as well as our extended family hard. Not exactly what we were expecting to find out when we went to Utah. Ian has undergone some more tests since we have been home…a swallowing study, which came back normal, as well as a sleep study, which also came back normal. He has started some new medicines, which are helping in many different ways. The best one is neurontin…one of the things is used to treat is neuropathy…this has helped significantly with his leg and feet pain, which in turn has helped with his sleeping and our sleeping. While Ian is still getting up quite a few times during the night…he will now go back down easily when before he would not go back down at all. More sleep means better moods and a much happier child as well as parents. It also means that he is doing a little bit more since he is feeling better from more sleep. He is doing great with his chair, flies around, he’s all boy. We are all doing well and moving along with everything. Oh one more great thing, we had a ramp built onto the house…the expression on Ian’s face when he realized that he could get in and out of the house on his own and no one had to carry him anymore was priceless….one of the many priceless moments we are going to have as we continue to search for answers.


One thing I am going to work on doing is posting more often as well as sharing all the wonderful things we are doing….after all….treasure yesterday, dream of tomorrow but live today.