How our lives have been touched by preeclampsia, cerebral palsy, epilepsy, feeding tubes, failure to thrive and whatever else comes our way
Sunday, June 29, 2008
Sadness
Sooner Start came out on Friday and they were very pleased with Anna's progress. They were glad to see she is developing some object permanence, they said this is evidence that her cognitive side is moving forward. We agreed on having OT twice a month for now. They will teach us things and then those 2 weeks in between visits will give us a chance to work on the skills. They are supposed to be bringing out some more adaptive equipment for us at the next visit. They were telling us about another child they had on services who is also named Anna. She is older then our Anna. They said our Anna is just like that Anna and they want the other Anna's OT to come out and see our Anna and maybe give us some more ideas on what worked with the other Anna. I believe the other Anna was also diagnosed with CP but ended up finally being diagnosed with a chromosomal abnormality. They again strongly encouraged us to have genetic testing done. I teared up. In some ways, a genetic problem would be better because I could let all of the guilt go. I could not have done anything different to change something that went wrong in the chromosomal part of the equation. But on the flip side, if it is genetic then that means it cannot be overcome- genes don't change. With CP, we can work hard and overcome the disabilities but with genetics, nothing will change. I spent a lot of time in tears the last couple of days. I had been doing so good but I got sad again. I guess it will come and go from now on. Carly's poison ivy is slowly getting better. I was up with her most of the night again last night. She is on steroids and is going 90 to nothing and can't seem to slow down. She has been funny though. She asked why Kenneth was getting baptized this weekend and I explained it was to show everyone that he loves Jesus. She says, "But Mommy, I love Jesus too but I don't want to go under water and get advertised." She was busy getting in trouble most of the day today. It is so hard to mind on very little sleep. Anyway, we were on our way home from Kenneth's baptism and Kenneth was getting on to her for misbehaving. He asked her if she understood him and we were both waiting for a response from her and did not get one. We turned around to find her with her fingers in her ears and not listening to a word that was being said. UGH. She can really try my patience sometimes. On a sad note, we received word Friday night that a friend had died. He was involved in a tractor accident and did not survive. His name is Terry Hyman. He was a state representative for Oklahoma but he was so much more than that. He was one of the last of a dying breed of men who have good values, love the Lord, love their family, want to serve the public, and believe in fighting for what is right. He was a true southern gentleman. He was instrumental in getting funding for the rural fire departments in this area and fighting for those who could not stand for themselves. He was just an all around good person. Kenneth called on him many times and Terry always came through. He didn't just do this for us, he did it for anybody because he loved people. Please keep his family in your prayers. They had already suffered a great tragedy in 2003 when their daughter disappeared from OKC and was found dumped alongside a highway in Mississippi. I cannot imagine the grief this family has had to endure. It is unthinkable. He will truly be missed by so many and anyone who knew him is no doubt a better person for having known him.
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