| Summer vacation is finally here after a long, hard school year; Maddy experienced first grade in public school. It was a really long day for her; she got off the bus exhausted and has still not caught up on her sleep. However, it was worth it. I saw so much progress in her. She can now add and subtract single digits AND.......TADA! She is beginning to READ! Sight words: the, and, am, my, in, this, many colors(blue, red, green, yellow). Things are still a struggle though. It definetly isn't easy for her; she has to really concentrate. You can see the wheels turning. She tries so hard. Her Dad insists we should have named her "Persistant". Of course he is refering to her asking for things but it is a strong characteristic that benefits her in many ways, even while driving us a little crazy. Madalin is a child that leaves a lasting impression on everyone she meets. I continually have people telling me how wonderful she is, whether it is her relentless thirst for life, her unrelenting smile, her compassion, eagerness to learn, enthusiasm, etc, etc, etc. We, of course, know how unbelievebly wonderfull our children are, each of them with their own special gifts. Who doesn't like hearing it though? |
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| Currently, we are trying to get some down time; we have been going camping and spending time swimming in our pool. Maddy plays softball so we spend alot of time hitting the ball in the backyard and attending games. We just took the girls to their first White Sox game. Madalin took her mit and eagerly waited to catch a foul ball. She tries really hard to be patient which is difficult because she is so focused on whatever it is she wants. We try to reward her (spoil) so we bought her an autographed ball in a case after the game. Maddy loves to fish and on a recent camping trip observed how "vewy patienwy" the fishermen waited. I could see how much she admired them, knowing how hard it is for herself to wait for her fish. Which, by the way, she is very good at. She always skunks everyone else when we fish by catching the most and usually the biggest fish. She has unusually good luck. Last year at Indiana Beach Amusement park she played a game where she was throwing rings on two liter bottles of soda. Maddy, of course, was the only winner the girl had all day and not only did she ring one, she landed them on TWO! That is how she is, just the other day she found $20 laying on the ground at the ballfield. |
| June 2007 |
| We are still on the acth. We are giving her a break through the summer and then we will reassess. She was having some minor symptoms, but since school broke things have mellowed out. She will be attending the same school next year and is moving on to the second grade. She will again be mainstreamed for part of the day and in a self-contained special education classroom the remainder. We may consider shortening her day next year if she continues to experience symptoms and exhaustion. After we settle in our school routine we may consider another course of treatment. I Deciding whether to try another treatment in hopes of weaning her off the acth is difficult at best. Another treatment means more side effects. Another wean may mean serious OMS symptoms, a decline in her abilities, and a drop in IQ. So far, tht is what has happened with every wean. She doesn't regain everything either. Every wean she has had a substantial drop in IQ, after she is stable it goes back up, but not all the way. The shots are horrible though. She hates them. I hate them. We all hate the shots. We need more research and better treatments, these kids need treatments that work and their parents need more information so they can make the best decisions for their children. |
| Treatments |