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Madison is now 9 years old!
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01/08/12
Happy New Year! Madison has officially turned 9 years old!!!! I can't believe my baby is 9 already. She is so small and speaks so immaturely, it seems silly for her to be 9 already, yet here we are...Thank God! Since I last updated, Madison has gotten brand new hot pink hearing aids :~) She loves them...because they are pink, not because they help her hear, and we are so grateful that her medicaid finally kicked in again and helped pay the 5,000.00 bill! Whew, just in time.
This of course means that she still has an enormous hole in her ear drum. The kind of hole that doctors ask students to come in and look at. The kind of hole they refer to as "impressive"...and not in a good way. I was furious that it was being looked at but not repaired until they explained to me that it was a very major surgery to repair the hole. He proceeded to tell me that they first have to remove the ear...yikes! Enough said.
We go back to ENT next week to further discuss plans to fix the hole since it is a source of infection (2 already) and cause her a lot of pain. Last week we visited GI as well as cardiology. GI was not happy because Maddy is now 4 blocks below the growth chart and she was at 10% last time we were there. I knew she had stopped eating as much and after she lost 4 pounds we started night feeds using her g-tube again.
No improvement means we are now also doing day time feeds as well. Not all the time, but bolus feeds throughout the day. We are using a prescription formula as well as Ensure which is higher in calories and has less volume. If things don't get better, we will be back to slow g tube feeds all day long with her keeping the pump in her back pack all day. That would stick.
Cardiology said that her needing a new pulmonary valve was a matter of "when" and not "if." He said her leak was "generous" (again, not in a good way) but not horrendous. Hum, thanks for that, I guess??? He also referred to her leak (as scene on the echo) as a wild tornado ripping through the middle of Kansas. That was to mean that the blood was ripping through the valve area at a high rate and it was all sorts of colors as opposed to red/blu. Not good...but not horrendous ;~)
He explained that decline was going to be gradual and long and that symptoms would appear and would remain until she got fixed. Her not eating is just one of them I suppose. I am guessing it'll be pretty ugly there toward the end of her really needing that valve. Not looking forward to that part. As I type this, at 7pm, she is already asking to go to bed. Poor kids heart tuckers out early.
You know I like to end on a positive note! Madison has been collecting postcards from all over the world. You know she like...no, LOVES geography and people have been so kind to send post cards of places that she can research and explore via the internet. Wow. What tools we have nowadays!
This has been a real picker-upper for her each day at the mail box. We have the GREATEST support system ever! She has also (finally!) learned how to spell her last name. We have been working on this for 2 years and it was a huge relief for both of us to finally see it on paper. One thing about Maddy, she never, ever, ever gives up. That's my girl :~)
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