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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Sunday, December 15, 2013

Home is busy

As much as hospital life is crazy, home life is just as crazy or more so. My mom came to stay with us to help me with all the kiddles and all the house stuff. I get embarrassed to have house work help, even my mom helping made me cringe... But, in the end I was so relieved to have laundry done and dishes cleaned that I am so grateful for her persistence. I am not talking just a couple loads of laundry... We are talking mountains:) I knew she could move mountains, and she so proved! I also felt guilty leaving her alone to manage the troupes while I took gator to get his blood work testing anti-Xa, protein c, protein s, anti-thrombin, pro thrombin gene 20210a/g and factor V lieden. He was not at all happy about doing labs. His buddy Tyson went with us , which  I am convinced is the only way he would do it. He hasn't been that big of a fan about the injections 2xs a day. But, he doesn't cry and pout with everyone any more. With all things we dislike, but know we must do, finding a happy will help. The happy for Gator man is that at home the shots are little needles. Diabetic size. His friend Joe brought neat-o bandages... He gets to pick one each time. So along with the other meds he is currently taking he will add these to his list. I bet you think we have friends at the pharmacy! 
We have been absolutely spoiled. I am so grateful for everyone. It is amazing that you can see a need and fill it. 
Tomorrow should prove interesting as I try and let him manage a part day at school. Wish us luck!

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