Saturday, July 23, 2011

Hot Hot Hot !! Living with Spinal Muscular Atrophy Type1



Oh my goodness I do not think its ever been this hot here for this long. Three window air conditioners on and I am still sweating buckets!!
Lizzy is doing great, Paul is healing and my Mom is doing much better!! I have come to the point that I am saying "Whatever!" to almost every new incident in my life. I seems if do not get stressed out over the situation  it becomes resolved faster.
Paul's surgery staples are healing well and no redness around the area. That is a good thing considering he has POISON IVY now too!! He is still very sore and very cranky these days too.
Lizzy has been doing the "Whine Voice" when she gets hot and tired and that has been hard on all of us too. Bless her heart, she is a great kid but when she gets that way until she falls asleep her "whiney sound" sends a screeching vibration to you inner ear and the pain is so intense.
My mother is doing so much better this week. She is coherent now and is getting her strength back. I am a head of her medical care now legally and I have them cutting back her pain meds successfully. I have them giving her Ensure in between her meals. She has an appointment on Tuesday with a dentist to get some new bottom teeth. She lost them the first part of the month and that is one the reasons she lost so much weight and was so weak. I made her appt for Tuesday to get a fitting for new ones. She was NOT being taken care of at home the way she should of been. She was being over sedated with no help feeding her.  God knows I have a "Full plate"  just taking care of Lizzy and Paul but I have managed to care for all three of them. I was with my mom on my birthday, her birthday and yesterday. Lizzy loves going out to see her. There are only 38 residents at the nursing home and Mom actually likes this nursing home much better than the one a block a way from me a lot better and SO do I. I feel much better knowing I have done what is best for her.Rachael, Robby, Lizzy Christen and I went to go see Mom on her birthday.
I am okay. Hopefully, the assistance we have gotten from the hospital will cover Paul's bills for his injuries. The amount exceeds $28,000.00. We were unable to get help through the state as we do not have a minor child or are we over the age 65. I had an interview last Thursday and we did NOT qualify for medical. We can not take the chance to put Lizzy on with us because if and when Paul does get a job and health insurance she could totally lose her coverage. She needs to keep hers. I also inquired for help with Community Action with utilities and there is no funds left to help us with that until November. Chin up!! We will get through this and we will survive.
Some more interesting things have happened to us this week but instead of saying I am" lethal " like I have been its a "What ever....
A thank you to our friends for being there for us when times are rough for others" I another SMA family was stranded on their way back home and it took 10 minutes or so after a face book post and they had help!! Amazing what SMA families can do when we work together!!

My prayers to my cousins Connie, Peggy and Billy for the death of their father and my Uncle Bill http://www.duffyfuneralhome.com/fh/obituaries/obituary.cfm?o_id=1211178&fh_id=10960  . I had lived with Aunt Ginny and Uncle Bill when my mother was ill for several months as a kid and it was one of my best times in my life.  I so lucky to have him in my life at such a young age. I loved you so much Uncle Bill as a child and thank you for all you had done for me doing that time. I remember he was an interesting person and my aunt loved him with all her heart until the day she died.  God speed Uncle Bill. He would of been 90 today. I was unable to attend the services today.
Thank you all that are in our life.
Prayers to Jacob who is in the hospital in Madison and to Julia who just had surgery and on her way home.
" We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth


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