Well I am officially freaking out. I bought brand new box folders the kind you can keep stacks of medical records in and carry around to each Drs. office. It is what I call my never ending bible of medical records. The problem is when I went to transfer them from the plastic files to the hard box files tonight I realized somewhere along the way, in the last week, I lost all of the baby's neuro-optholmolgy records from CHOP.
The last place I had them was Dr. Boo's office when they were making copies of them for their records.
Ugh! So now I have to try to get them back by Friday, before our Good Shepard appt.
On top of this I am trying to watch the Yankees win the World Series with the baby sleeping next to me. It would be his first NY Yankee world series win with me! Maddy of course is sleeping and could really care less about the Yankees. Although she is trying hard to learn the rules of baseball. She knows the difference between a strike and a ball now! Something I am still learning. She even understands the pitching count, sort of! They are such great kids! My dad must be looking down from Heaven with the biggest smile. I wish he was here to enjoy this with us.
I am also in the process of starting a secondary medical bible. The one I mentioned above is all of his records, the other big book I am starting is now 18 pages long with everything my family would need to know about the baby just in case something should happen to me. I am trying to remind myself it is good to have a plan, you never know what life is going to hand you. I would have never expected this with the baby when he was born. This new book contains all Drs. names, specialties addresses, phone#'s, which Dr. provides what medicine and which insurance companies covers what and how to get it covered. It also explains schools, IEP's, Medical fragile daycares and the nursing/home health agency.
Ugh! Maybe I just worry too much and stress myself out more than I should. Whatever the case maybe... Let's go Yankees! I need a smile tonight!
If It Were Not For Hope The Heart Would Break
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About Me
Maddy and Robby
"Life does not have to be perfect to be wonderful." -- Annette Funicello Robby
My beautiful boy, Robby, is 8 and was born with a genetic abnormality of unknown etiology. A duplication of his Xq28 chromosome complicated with Mitochondrial deficiency Complex 1. He is considered CP with Mild Optic Atrophy, Intermittent Strabismus, Seizures and has Autism secondary to the genetic abnormalities. He uses a walker/wheelchair and MAFO's and he is learning sign language. Madison Marie
My beautiful girl. Madison is 9 and enjoys art, music and reading. She plays softball, ice hockey and soccer. She also loves to catch butterflies, and play with her friends. 
"Every child is gifted. They just unwrap their packages at different times." -- unknown 
"You've developed the strength of a draft horse while holding onto the delicacy of a daffodil ... you are the mother, advocate and protector of a child with a disability." -Lori Borgman Check me out on Facebook! |
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