Things seem to be going great for Ed. We went and met with the Penn Transplant team. They are ready to do his transplant... as soon as we find a donor. His 1 brother & sister are scheduled to go next week and his Aunt & Uncle are trying to get in next week as well. If one of them is a match they can do the transplant as early as June. That would be awesome.
When we arrived home from Penn, my parents were sitting on the porch. I haven't seen my Dad in a few months, I can't believe that much time has gone by, but with this crazy life it has. My Dad looks so old and so sick. It broke my heart in half. I knew he was sick but I haven't really taken it serious. He is one of those people who is always sick. I was so upset with my Mom & brother for not telling me how serious things were. It was devastating to see my Daddy that way :. (
Today Evangeline had therapy and her speech & language pathologist told me she has Apraxia. I have heard of it, but didn't know exactly what it was. I know now. I have been researching it all evening. It does sound like that is what she has going on.
What is Childhood Apraxia of Speech?
Childhood Apraxia of Speech is a motor speech disorder. For reasons not yet fully understood, children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech. Apraxia of speech is sometimes called verbal apraxia, developmental apraxia of speech, or verbal dyspraxia. No matter what name is used, the most important concept is the root word "praxis." Praxis means planned movement. To some degree or another, a child with the diagnosis of apraxia of speech has difficulty programming and planning speech movements. Apraxia of speech is a specific speech disorder.
The act of speech begins with an intention to communicate. Next, an idea forms, outlining what the speaker wants to say. The words for the desired message are put in the correct order, using the correct grammar. Each of the words are comprised of a specific sequence of sounds (also called phonemes)and syllables that must be ordered together. All of this information is translated from an idea and information about order of sounds into a series of highly coordinated motor movements of the lips, tongue, jaw, and soft palate.
The brain must tell the muscles of these “articulators” the exact order and timing of movements so that the words in the message are properly articulated. Finally, the muscles must work properly with enough strength and muscle tone to perform the movements needed for speech.
In typically developing speech, children make word attempts and get feedback from others and from their own internal systems regarding how “well” the words they produced matched the ones that they wanted to produce. Children use this information the next time they attempt the words and essentially are able to “learn from experience.” Usually once syllables and words are spoken repeatedly, the speech motor act becomes automatic. Speech motor plans and programs are stored in the brain and can be accessed effortlessly when they are needed. Children with apraxia of speech have difficulty in this aspect of speech. It is believed that children with CAS may not be able to form or access speech motor plans and programs or that these plans and programs are faulty for some reason.
In a nutshell, things won't be as easy as I thought they would be. There is something more to deal with.
As a woman, I feel I can handle anything thrown at me. I have been doing it. I really seem to get a lot thrown at me. As a mother it is hard and gut wrenching to see your children suffer. To see life be harder for them then it ever was for you. As a wife, best friend & partner, to watch your mate not feel well, weren't we just kids together misbehaving and doing naughty things where we shouldn't without regard for anyone else (18 years ago) how is he suffering this way. As a daughter, how can I watch the strongest and smartest man I know waste away. He has 20 years left, he is the one I call when I have a question about cooking or God or growing up with Aspergers. He is my Daddy. If God gave me the challenges maybe it would be easier.
NOTE TO GOD, Please do not give me any challenges at this point, I have to many other people I need to care for.
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