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

Feeling better/Another medicaid Insurance Denial(Spinal Muscular Atrophy)

Elizabeth is feeling a lot better. Her nose is still full of stuff but she assures me she is ALMOST well. I think this illness is going take awhile to fully get over. She was still on Q-3 till 6am. I was getting ready to start a treatment at around 6 am she said "Nina I just want a cough and suction. I don't need nothing else" So we have went to more coughs and less nebs today since she flowing. Her treatments are going pretty well. The gunk went from thick white gunk to clear to thinner white gunk. She is still drooling like crazy

Lizzy was denied her RSV shot today . My stomach sank to my feet when I heard that. Imagine that? They said (The Dr for Medicaid here in IL ) "Since she is 5 years old her immune system should be strong enough to fight off RSV now". According to out doctor's nurse here since she said she talked to him on the phone for a long time today. So, much for all research they did about SMA Type 1s. I have contacted DR.Schroth but have not heard anything yet. So, we are in panic MODE. I dont know what else to do. Cancel all her appointments and stay home all Fall/winter? Cancel Holidays? No one comes in or out? We are careful but you never know who is coming down with what. Last year she didn't start the shots until December. If she gets RSV we are talking about several days hospitalization. If she gets RSV with having the shot it is not severe and with out the shot she could die. They just do not get it. She is only 24 pounds so its not like she will a huge amount.

On a good note the Xopenex was finally approved. I do think Senator's Rutherford's office had something to do with getting it approved. Thank you Peg if you did.

Lizzy was in her power chair tonight and ran over her Mom so she got put in the corner with her chair off for 5 minutes tonight. You should of heard her. "I can not take this any more, This is terrible, You are so mean to me Mom, Oh my gosh Nina what time is it? " She did this for 5 whole minutes non stop. I had to hide my face I was laughing so hard.
God Love her she is such a little character with so much spunk and always something to say!!
Pray Lizzy can get the RSV shot or we find a way to pay out of pocket for it. I am just sick.