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07/11/10
Madison has had a really good run of it this year. We have been to the operating room more times than I could count, but for lots of little stuff that I consider maintenance. Looks like we are heading to the OR again shortly for another dental issue, but maybe that will finally be it for 2010. Her cardiologist had a look at her newest MRI and was comfortable enough to say that we were in the clear for 2010 and probably 2011 as long as she didn't get sick. Any illness (flu/strep/infections) takes a huge toll on her heart and quickens it's failure. He predicted 2012 would be the year we went in for her next open-heart valve replacement. I was happy with that news!
In the mean time, we have been working on her getting situated with homeschooling. She has taken to it like a duck in water and is making huge strides! She has begun addition and subtraction and is learning about space exploration and kids in other countries. I absolutely love educating her, it has been very rewarding and she makes it such a pleasure.
We removed my office from upstairs and made it into a full time classroom for her. She loves having everything in it's place and I think it makes her feel more like she is in a class room. We are slowly gathering things to make the classroom a place she wants to be and is comfortable for her.
Aside from the dentist which we see soon, we will also see immunology for her blood work check up. I feel confident things will stay the same there. Hopefully, no surprises! We also will see audiology to discuss hearing aids again and Ortho to recheck her hips and scoliosis. Her right hip still seems to be worsening and I fear we are going to have to make some major decisions in that area. Leave it alone and risk arthritis, limited ability and pain...or surgically break the hip, pin and screw it into proper position and cast her for 12 weeks to 100% fix it. That's a decision I do not want to have to make.
If you speak with Maddy, you know all she talks about is travel, well...we are finally taking her on her first flight to San Francisco! She is over the moon excited and has spent days on her laptop googling places to visit while she is there. This trip will really be something for her to experience and I am excited thanks to Dan's travel points, we can do this with her and Ben.
Although we have had a lot of trips to CHOA this year, we have also had a lot of miraculous events, things I never thought I'd see her do. She was a flower girl at my brothers wedding, she began karate at Satori in Roswell (even with her g-tube and Port!), she learned to read and now the trip to California. We are so thankful that she is in such good health and is able to continue to grow and lead a productive life. She is full of love and life and every night before she falls asleep she screams across the house for all of us to hear, "THANK YOU GOD!" And in response we all yell back, THANK YOU GOD!
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