Friday, January 21, 2011

Running Really Fast!

Thanks to everyone for all of your concern, prayers and support on the blog and in emails. It helps so much and I am happy that I can show Jerry as he grows how many people have loved him and prayed for him. My anonymous friend that has a 35 year old waiting for a heart...I would love to connect further. If this idea is mutual you can leave your email or email me at suezchi@comcast.net

Waiting for the reports from cardiology. It may seem strange that that is the best way for me to get more information but it really is. I can decipher most of the report and look up what I don't understand. That gives me a stronger basis for figuring out what further questions I have. At the end of our 5 or so hour appointment, after we have been gone since 6:30 am, I usually do not feel I can clearly articulate my questions and just want to be done. Especially after totally unexpected news.

Jerry's heart medicine was increased at his last appointment and it seems like it is making some difference in his endurance. Not scientific of course and he does have ups and downs, but he is seems to be able to be much more active for longer stretches without being out of breath and coughing. Usually he can't walk around the block without a lot of stops and he did. And tonight he ran around the first floor circle of our house for maybe 10 minutes straight with Isaac. He was so proud saying "Look at me mommy, I'm running really fast." The calorie burning was killing me but I also love to see him so happy and acting normal. He has been more willing to walk up the stairs instead of crawling. He had been pretty consistently walking up until after the illness that landed him in the hospital. John and I just watched him in amazement thinking it just can't be true that his heart is not OK. In reality though, it is a common story for kids with heart disease and has always been true for Jerry that he looks so much better than he is. I might try to put a little video on of Jerry running around but John started running with them making faces in the camera....might of just ruined the video!

Just a few minutes before, Jerry had taken off his pjs because he wanted to "be naked for a little while."

We have recently made great progress with JJ's sleep too. We have been having to sit in his rocking chair while he falls asleep and have been taking turns sleeping on a mattress on the floor in his room because he was waking up screaming every 15 minutes or so all night. He has had issues on and off but this worst stage started after his last hospital stay. I cringe to think what we might still be in for.

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