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Blog established August 12, 2024. Total knee replacement (Mako Robotic) scheduled for Sept. 10th. More to come.

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  ABOUT ANNA Anna is complex in many ways. She is basically non-verbal, her “language” is a mix of using PECS, a few simple words, an iPad App (Go Talk Now), and hand gestures. She does speak a few simple words, all single words and never a phrase. For a reason we can’t understand, at the moment we are seeing more and more moments where she is trying to communicate to us about her wants and needs, we are trying to understand what she is saying, and all we are doing is getting frustrated with each other because no one “get’s it”.  This has resulted in more self injury behaviors in Anna, which is how she typically shows her frustration. Anna will hit herself, sit down and bang her head of the floor, bang her iPad against her head, bite herself or us, pull hair, push furniture over, pull pictures off the wall, ect… We don’t have a solution to this other than to try and redirect her and prevent her from hurting herself more and working to “Anna proof” our home. For the last ...
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 Well I'm home and now almost 2 days post surgery.  Denise is fully in charge. Yesterday when I got home I didn't feel that bad, but I knew that was primarily because the surgical nerve block had not worn off yet.  As I write this now (approximately 40 hours post surgery) I can tell the honeymoon on pain is over and the next few days I will be helpless for the most part, the pain is quite intense in spite of my following the pain management plan given.  Surgery night (Tuesday Sept. 10th) was hard on Denise, Anna had a rough evening, difficult sleep transition, some screaming; all they typical behaviors when there is a change in the house.  Denise did give Anna an extra sedative dose and she did get down at 10PM and did sleep through the night. Wednesday morning Anna had a good morning, Denise said she had a large BM (her agitation many times is a sign that she has a full colon) and was sent off to her day program with no real issues, per Denise. Our caregiver Gi...
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I've decided the first note should be on who we are and why I decided to do this. My name is Paul, my wife's name is Denise and our daughter is Annelise (Anna). We also have another daughter Eva, her husband Justin, and a grandson CJ. Anna has what is considered an ultra rare genetic condition that has resulted in her, among other things, being significantly developmentally delayed. The condition is not important but if you interested in learning about this ultra rare condition please check out the Champ1 Foundation (champ1foundation.org). A detailed summary of Anna's life story can be found on their website. Anna does, and will require support and care for the rest of her life, as well as continued medical care and evaluation(s). For Denise and I, going on 15 years now the primary caregiver role has been myself; Anna just listens and reacts to me better, she always has for some reason. In about 2 weeks now I will be having a total knee replacement and will be unable to car...
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