Between working on the 2 blogs I have open and the group opened in honor of Kody as well as keeping up with a few other pages .... its a juggling act. But he's worth it. His current first love is his PS3. Thankfully this morning his speech is better. Yesterday it took asking several times for us to understand what he was saying. Has also talked about his legs not working even alittle bit anymore. Both of which are progressions of the FA. Is it sad ... yes. But we have to cope with things as they come because honestly we have no other choice. Does that mean we are giving up? No it doesn't. It means we are modifying things as they come. Have seen a few houses for sale within our neighborhood that if things were in check already we would be looking into. Starting to put together a list soon of needs and anticipated needs of the home we will buy. Called to make his cardiology appointment this morning for April. Thankfully there was a April schedule already available. This time around he will have an EKG (electrocardiogram: electric record of the heart) and an echocardiogram (ultrasound of the heart) to determine the status of things. Making sure to bring the last halter monitor results with me he had done. They are from back in Sept of 2008 but wanting to see what his current doctor says about the results. Knowing what I do about the ekg results it shows there were issues where the doctor who had it done said that it was fine.
One word of advice would be to make sure to always get a copy of your child's medical chart. Working on putting a full chart together for all of the kids now. I have most of the stuff for Kody but not everything.
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