Living with Spinal Muscular Atrophy - Emotional Roller-coasters

On Tuesday, of this week our car was burglarized. My husband had just put new brakes on the car and left his check book in there because he had been at Auto Zone.  Well, they found his check book and his UAW union calendar in one of the suspects possession. Thank goodness that they caught the trio right after they got our car. We were on lucky. They are blamed for several break ins here.  The police were called after some one caught them trying to get in our vehicles. We had not a clue until the police knock at the door we had even been robbed. It gave me sick feeling like we had been violated. They tried to break in the van but thank goodness it is kept locked.

Last week, was a very emotional week. I was doubting myself and a feeling a feeling of complete helplessness. I cried for two days. To put Elizabeth though a huge surgery like spinal  rod surgery, then lengthening every 6-9 months is something we have to  as a family agree on.. If she was having pain or breathing issues there would be no doubt she would get it done as soon as possible.
 As soon as we got home from Madison last week I started researching and talking to others.  Imagine that me researching and talking on the phone.... Well, Christen and I have been using MF therapy TOGETHER on Elizabeth since last Thursday.  Me getting help.... ( The crowd roars) I do not get help with Elizabeth's treatments  EVER till now. At least with stretching. The truth is Elizabeth and I spend a lot of time at home alone together. Any way Lizzy's MF PT Linda and her PT at Easter Seals Jayme both said Elizabeth is straighter now than she has been ever this week. Whoo hoo. Positioning her in the van I have to admit has been quite a challenge. She lays with the Easy on vest on the back seat. The seat has a slight angle in the back. I put pillows under her head and on her back but you can tell my how tight its not good for her to do that. We need a small manual lift plain and simple to fit the Dodge Caravan since we were not able to get a handicapped van. This is so Lizzy can sit in her power chair while traveling and give her better support. Her chair reclines so it should not be an issue. Any way we are trying to figure out  how to get a manual lift that will fit.We have a few things in the works. I hope somethings works out.

A very good  friend of mine sent me a neoprene wrap for Lizzy also that keeps her from slouching. It is great and Lizzy loves it. She says it helps her back. She never complained about her back unless she was in her  power chair. Since, I redid her seating and Christen redid her head on her chair she is sitting much straighter in her chair. She still needs a brand new seat and we are getting a new seat HOPEFULLY very soon.
We are trying some alternative things to help her for a while then we are going back and getting more X-rays. We understand she may still need this surgery but for her being so flexible right now that is to our advantage. I am not defining DR.Schroth's suggestions we are simply putting her suggestions on HOLD for now and getting a second opinion. Nothing wrong with that. If her breathing was in any way affected from her back then we would do it immediately. She is in no pain either.

Very emotional day here today. Paul and had HUGE words over bills. He was just cut the little bit of gas money for school(grant) he was getting. I help out with groceries and Lizzy' supplements. ALL I asked for bill money and oh my gosh you would of think I has asked for a million dollars.   I did not know what happened when I asked him for money to pay the utilities.When is our financial status going to get better?  We need some divine intervention to help us get through this bad time. Its ruining our relationship of 35 years of marriage going through this . All I asked from him after the blow up was an apology and never got it.  Him and I used to get along great but these last few months it has been little or no words between us. Just a lot of stress. A lot of our issues are brought on from Paul not helping around here with handyman things, not taking Lizzy outside ,money is a huge part and Lizzy's dad trying to cause issues between us. . No matter how hard I try Lizzy's dad and I can not get along. More issues with that situation than any one knows. Seems like 3 steps forward and 4 steps back.


Closing on a good thing.  Lizzy is doing great!! Her hips and back are straighter!! She has had a pretty good summer.  Summer soon will be coming to an end. I love fall but I do not like the illnesses that come with it.

Reed Michael has his first leave and with his Mom, Dad and siblings in Kentucky. He asked me for one of my swedish T-rings for his birthday. I made him 2 . He is pretty special for me to make home made coffee cakes in August!!

"We believe in miracles because we live with one"

www.our-sma-angels.com/elizabeth