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

Taking a Deep Breath..... - Living with Spinal Muscular Atrophy Type 1

As, I wrote in my last post husband had a terrible four wheeler accident on the 4th and I have not been online too much. He broke 6 ribs, collar bone, scapula,and fractured pelvic bone. He had surgery today and a plate put in in his shoulder. He is recovering but the doc said yesterday because of all his fractures it will be 9-12 weeks before he will be able to do much after extensive physical therapy.
My positive attitude left me for about 3 days after this last bit of bad karma hit us . I had to realize things happen and I  climbed out of that hole that was sucking me down in it. I am back up and realizing how I let my stress consume all my inner thoughts and control me. Never going to happen to me again.
Another,  situation has ended up in my life with my mother. She has given up and was placed in another nursing home today. Christen saw her and she said "She has never looked so bad". I shed some tears tonight but only because I am feeling guilty and my heart hurts because I was not able to be with her. I was sick during her last hospitalization .  I had sinusitis and allergic bronchial asthma. I was a really sick.  No,way I was going to give mom this illness if it was contagious. I wore a mask at home with Lizzy. Then , Paul's accident. I hope I am not the reason she gave up. That will haunt me the rest of my life. My mom has not been easy to live with since I was 7 years old. Lots of mental illnesses. I think that is why I am so strong minded because I did not want to have my family go through the life  I went through. She has been having bad pain issues since Christmas. I do not want to lose her but she is in such great pain these days. Will she regain her strength or will she die in the nursing home? I am so torn right now. I take care of Lizzy and have been taking care of my husband its been hard to get my mom the care she needs. Am, I supposed to care for her too? Should I go get her and take her home with me? She can not be just dumped off like a stray cat in the country, I need to pray deep to find the answers I seek. I do not know what to do.
Lizzy is my light she keeps me sane. She is a sweet incredible child.
Our trips for this month are as of now cancelled. That really blows. but..... what can you do? Family has to be taken care of first.
Please keep Paul and my Mom in your prayers.
" We believe in miracles because we live with one!!"
www.our-sma-angels.com/elizabeth

I know God won't give me anything I can't handle. I just wish he didn't trust me so much." Living with Spinal Muscular Atrophy

I thought the summer was going pretty smooth but seems like things keep happening all the time, Makes me wonder if in my past life if I was really bad or something. I am truly not a "WHINER" !! I know I try to stay as positive as I can but with the situations that keep finding their way to us makes you wonder. As,  Mother Teresa put it best "I know God won't give me anything I can't handle. I just wish he didn't trust me so much."  Mother Teresa was a wise woman . I have used that quote before because I think about that all the time.  I have to endure a lot the past few years. At some point we all face trying times and feel powerless to be able to get back on track again. If you give up and quit trying you will not get back there. I seem to be doubting myself more and more these days. Then, I pick myself brush myself off and continue on. Why I am I like that? I think its because of the life I have had since a child and because Lizzy helps me realize I can not just throw in the towel. I lost my arrogance from earlier years and replaced it humility the older I get .  If that makes sense.  I take each day as it comes. 


Its been a rough year. My husband does seasonal outside work like mowing, cutting trees down, weed eating etc just so, we can get by. Twelve bucks an hour these days is not the best wage in these trying times but it helps pay the bills. My mother has literally emotional drained me. This last weekend was bad with her. She is not well  but.. she  has went to the extreme recently. I think a lot is she wants the attention. With her recent mental frame of mind it makes it harder every time to deal with her. She has been as bad as a child. Well, worse !! Lizzy is a child and she does not act like my mother. I love my mom but too much is too much . Then, the event that happened this weekend to my husband was something I prepared myself for many years ago expecting it to happen  a long time ago NOT NOW. He is a rebel. No doubt why I married him was for the wild life he led. We have been married since Dec 5, 1974.He is 57 !!  He has mellowed with age. ....  I thought.   NOT!! He was out at my daughter's house and he flipped the 4 wheeler. He was taken by ambulance to our local ER and we spent 7 hours there last night. He had been laying across the lake for over an hour and half alone with out anyone hearing him whistling .  He finally found his cell phone called one of my girls and  they all ran to his side. Leaving me with Lizzy and freaking out on what was going on. He has a broken collar bone, 6 broken ribs and a fractured pelvic bone. He will be fine after weeks of healing. Yesterday,I was concerned for his life . Now today... I am concerned about how to pay the bills next month and the months after.  I get paid just a bit over $600 a month. The income tax we have been living on is almost all gone because we have lived on that also. What are we going to do? I am going to try to do his job mowing myself. Lets see. I need to lose some of this carb weight I gained . Might be fun or it might kick my hiney. 
I had made home made pulled pork, cole slaw and potato salad for Dawns on the forth where we were at when his accident happened. Since,  we were at the hospital my food was all taken home  with people!!  LOL At least they all liked my cooking. (Trying to add SOME humor to last evening.)

Lizzy was coming down with something Saturday and since we caught it quick "nipped it in the bud sorta speak" she was doing great yesterday. She is pretty tired today because she stayed awake  last nightwaiting for me to say prayers and said "She really missed me." Sweet Child. Bless her heart.

Paul is slightly better tonight.  He wound on his pelvic bone looked a bit better. I have to clean his wounds. I did it but it took everything I had but I did it !!I dont usually do wound duty!!  I get all light headed doing any kind of thing with the skin, blood  and bone thingy..... ewww.  The docs last night are worried about pneumonia with the 6 broken ribs.. Paul says" This is about as bad as taken care of your Mom" I sad "No, Paul I am supposed to take care of you when you get hurt." This does not bother me. You are my husband. I said "I can take care of you and Lizzy no problem. " WE WILL GET THROUGH THIS!!

The Casey Anthony Verdict shocked the heck out of me. I do not believe it. Are these people crazy to let her back out on the street. Makes no sense to me. Now , they will probably make a movie about her, write a book and she will be a millionaire. Commit a crime , become acquitted and become a millionaire. I see something REALLY wrong with this picture don't you? hmmmm?  Just hmmmmmm?

Please add Paul to your healing prayers. Also, add Julia Kay who has Spinal Fusion on Thursday.

One tip: Use : 100% Pure & Natural Ubiquinol as Coq10 supplement. It gets to the blood stream faster and is better for you!! I get the gels and poke it with a lancet and put it in Lizzy's food mixture while making it. I use 50mg Swanson Brand and going to up her very soon. 
"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth