When we first learned of Daniel's diagnosis, of course things that we had observed in Daniels little life started to make sense to us.
One such thing was Daniels tendency to have issues with choking or gagging on food or water. Before learning of his diagnosis, we really didn't think it was anything serious but with children with Lissencephaly, there can be problems with aspiration pneumonia and that can end up being deadly. We decided to have a speech evaluation to make sure he was not silently aspirating.
The Speech Therapist came out on Tuesday and looked at how Daniel eats and swallows. The good news is that Daniel closes his lips and clears the spoon of food. He also has a good defense mechanism that does not allow him to aspirate. He chokes or gags to protect his airway. However, he does not initiate a chew. This is something that I kinda figured. Given a spoon of baby food, Daniel just swallows and in no way does it get chewed up further. So, that is something we need to work on. It is true that he has never been one for chew toys or such things. But, we shall work to getting him to chew and as for the water, we will need to thicken it to get him to take it better.
You know, in the hospital I would see far too many children just like this. They needed thickened juice and needed help with feeding. Which still leaves me to ask, did I bring this upon myself?
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4 comments:
I want to thank both you and Jason for continuing to update the blog with your thoughts and feelings.
I know how frustrated and helpless Denice and I feel, so I can't imagine how you two must feel.
I post today to get from you guys a list of charities that you feel would be most beneficial to Danny. I am very forturnate that my employer and management offer to match any donations I make as an employee. Given this we would like to donate where you feel it might make the most good.
This information might be helpfull to other readers of the blog so you might want to post that info here as well.
Lissencephaly is such a rare disease that there isn't a single dedicated organization. Instead you may consider one of the following:
- National Organization for Rare Disorders (NORD)
- March of Dimes
- The Arc
Each of these organizations has a different mission and carries out its efforts in different ways, but I don't know enough about any of them to select one over the others.
I found this organization, who also happen to be a non-profit... have you guys checked them out and/or found them to be helpfull?
http://www.lissencephaly.org/
I was aware of Lissencephaly Network as an information source. I didn't realize they were a charitable organization that solicited donations.
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