Saturday, November 22, 2008

What does the future hold for us?(Spinal Muscular Atrophy)


Tis the season to be start writing your list for what you are going to buy your friends and loved ones. Usually, I get a warm fuzzy feeling just thinking about what I am going to buy for who. This year is the first year that I can remember where I am actually worried if Paul and I buy presents if we will have the money to live on in January. The kids talked him into a gift exchange where we only buy two gifts. Which I was very upset about but..... knowing what I know now I actually get sick to my stomach thinking about shopping. My husband's plant where he works may just shut down. They have laid off many due to the economy. He was down-graded and lost $2.00 and hour. Then the utilities have went up. Our water bill just came in and its $72.00 for one month. That is just water. What is up with that? Now since its cold the heater has been on so what is the gas bill going to be? I am shocked at how things just keeping going up and then my husband pay goes down? What is wrong with that picture? We are trying to figure what to do. We can sell the house but the upgrades have not been finished and with Paul being in a sort of depression he has been in I don't see him completing those tasks anytime soon. The kitchen has half new cabinets in that I bought that were demos a few years ago. The tile floor is done and Lizzy's Dad helped with that. Every time I say anything about it I am "Nagging" I give. I don't know what to do about getting it finished. I am getting a part time job as soon as I can after the holiday. I can not take it anymore. I will get these things done myself. If he loses his job we are out of here. Moving up by Chicago or Wisconsin. Where ever he can get work . This is really scary. I have college behind me so it will be easier for me to get a job plus I have also worked as a Hospital cook, Bartended and management in retail.
Enough.... Of that.

Lizzy is doing well. She is out shopping with her Mom and Dad to get her friend Payton a birthday present for tomorrow. The kid was worried about going all day. She kept saying "I need my Mom so I can go to Walmart." She said it probably close to 40times today. It got dark and she was worried she would not be able to go." I made sure they kept their promise to her tonight. She has a face mask on so she doesn't get sick. Lizzy is so much my heart. When I put her to bed every night she says "Nina I just love you." I say how much? She says "to the moon and back"

We are having Thanksgiving at Dana's house this year. I told them Lizzy is taking her power chair too.

I haven't heard much about our prison except they got them to stop transporting prisoners out till Dec 1st. Scott McCoy our mayor here and Dan Rutherford State Senator are working HARD to keep it open. The Governor has actually paroled men that have got out and killed people. Yeah..... REALLY . You know that actress that recently lost her relatives in Chicago to a killer? That guy accused of doing the murders had got out parole here In IL after serving 7 years for attempted murder and with the governor's NEW Plan all these hardened Criminals are getting out!! Scares me!!!!!

Here are two articles on what is happening here.

http://www.pjstar.com/opinions/x2067099653/Adams-Hudson-link-a-red-herring-i
n-prison-saga

http://www.suntimes.com/news/mitchell/1290133,CST-NWS-mitch20.article

2 comments:

Sky said...

that is all so scary, they are talking layoffs hear too, I can only pray my husband is safe (you just never know) If there is ever anything I can do, let me know. your all part of my family too! hugs Sheila

Lizzy's Nina said...

Thanks Sheila.
Get this- got a call from the MDA today (on Sunday) and the lady I talked to told me that we do not have the extra funding source for 1100.00 from the ELKS secured to help them purchase Lizzy's chair. The MDA will give us 2000.00 but the 1100 we have to come up with. Okay things are rough now have been crying my eyes iut for the past hour. Lizzy's scoliosis is getting worse because she does not have support she needs in the manual chair she uses she has out grown it.
You know so many brick walls with these kids. It just tears your heart out.
They think she can use her power chair. Her chair does not have full recline. It needed that but the vendor did not order it. She has to have custom seating done. It has not a push handle or parent controls. We have a parent sending us the parents controls off her daughters old chair but no push handle. We could not get those extra from Lizzy's insurance. Any way we can not take the power chair to CA with us. She needs this manual chair so bad!!