Our Illinois Governor Rod Blagojevich is being impeached by the Illinois House today!! Like....finally!! Maybe it will save our prison from closing. Maybe Lizzy will be able to the Medical Waiver program to help out with what we need for her!! The Governor had used the funds for that program we found out last year to fix the roads in Chicago.
On the update about my husband's job. Well, right now we know the company filed Bankruptcy and the company from Spain is buying it or bought it . So far they are working this week. They are running 1st shift and very few on second. They had laid some workers off a week ago. Also heard they MIGHT be on over time next week. We will take what we can get right now. We are just praying everything works out. I mean with the economy the way it is how can they ask the employees to take a huge pay cut and then pay more insurance? That is crazy!! Lizzy and I have been praying every night that things will turn out okay.
I saw the doc yesterday. I lost a bit of weight and I may have Carpal tunnel syndrome. I don't believe it. We are just watching it right now. You know when you work hard when you are young it catches up to you!! You think you are invincible. We talked about My husband's work situation and talked about Lizzy's RSV shot denial and how hard her had tried to get her that shot. He talked to like 10 people at the state to get it for her and they all said "no. They were not going to approve it at all no matter what."
I told him I needed to go back to work and he said we will wait to see what happens.
There was a baby that passed yesterday with SMA Type 1. Actually he died from Pneumonia. The parents chose to turn his machines off.
Fly high Little guy fly free of SMA. Please Jesus take him in your arms. All I can do is pray for them. If I offend you in what I am saying I am sorry. I see families that just give up the fight to save their children with Type 1 and turn the machines off because they think their child is suffering. The truth is sometimes the child is just sick and needs help to get well but the parents choose to just let them go.
That is their choice for their child as much as it hurts me to hear about it. Its is not any easy life for any of us in the SMA world but it is a good life after we figure out what works for our kids. Lizzy has the best possible life we can give her and she is happy. Not so many years ago they did not have interventions to help these kids. They were given a death sentence after they were diagnosed like Lizzy and so many others were. The NIV Protocol has saved so many. Then the AA diet and so many things you can do to help these kids. Now there are also drug studies that can help these kids produce more SMN protein.
We have to fly to Stanford in March. We need to get busy figuring out how we are going to get there. We have been so consumed with worry over my husband possibly losing his job we have not even thought much about it. Hopefully, Gas prices will stay lower so it will not cost so much to fly like it did in October.
1 comment:
oh I saw that today, and I said an ya hoo for you, I cant believe what all he got away with, who knows maybe he didnt!
Im praying for your husband to keep his job, and ill add your hands to my prayers, carpal tunnel is painful.
i agree with what you wrote 100% i asked a question a few days ago, is there a line from giving up and letting go. i think so! Fly high little one, fly high.
I hope you all have a good week, give Lizzy some love from Sky and I hugs Sheila
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