All about Lizzy's life and my life as Lizzy's caregiver. Lizzy has Spinal Muscular Atrophy Type 1 and is a miracle! She has NEVER been able to stand, walk or sit(with out assistance). She is such an amazing child with the determination to over come many of her battles with this terrible disease. She is a happy child and is always smiling.
Sunday, February 1, 2009
Moving right along (Spinal Muscular Atrophy Type 1)
I know watching the super bowl is what most us Americans are supposed to be doing right now. Well, the truth is I do not enjoy watching football and I only watch the commercials and half time while the super bowl is on. Shame on me.... eeeeek ...
In truth I just do not like watching grown men fighting over a ball rolling around in the dirt. I used the pretend to love it that but now with age I have no patience for it.
Well, we are still okay. Paul has been working all he can because not knowing what March will bring with the sale of Interlake. Two other buyers they say are now interested in acquiring Interlake at the auction besides Mecalux from Spain. The Auction is scheduled for the the first week in March now. Reading the court proceedings every day is very interesting. We are praying hard the new buyer will not change anything but it Mecalux buys we already know the out-come. The reduced wages,benefit cuts and basically we will lose our house. So, we need all the prayers we can get to help us keep our house.
Lizzy is doing well. She has been so interested in my great niece we have been watching the last few weeks and is thrilled to be able to see a baby and hold her. I am doing free babysitting so they can get back on their feet. She was born Dec.5.
Last night Elizabeth and I curled her dolls hair and redressed her dolls many many many..... times. She actually has taken a break with her nintendo DS for a few days. She keeps me very busy these days.
My daughter Dawn was told to go on bed rest. She is is not due till March but can go at any day. She is in panic mode because we have a UW visit Feb. 20 and she is so afraid she will go in to labor and I will be in Madison with Lizzy. So.. We have tried to move up our appt a bit on the waiting last for a sooner appt. I want to be here when she goes in labor. She is having a boy. Dawn has yet to disclose his name yet.
I have actually been helping my nephew change his way of thinking and help him figure things out to repair the damage to his marriage. Hopefully, I have given him a guidance on what he needs to do to keep his thinking where it is. Him and his wife decided to stay together and work together to fix it. It takes two to make it work. I have talked to both and I they actually listened to me. Can you actually believe that?? To be 19 and 20 again and know what I know now.... To do it all over again. Wouldnt that be great? My husband and I have been married for 34 years. Lexy is such a sweety I would hate to see her Mom and Dad split up.
I hope this works out but ..... The only problem is they like us and they have been here the past few weeks almost every day. So, today they went to Grandmas to watch the Super Bowl.(With Christen's suggestion) ** sigh** Thank you lord for giving me "a breather" today. No problem watching Lexy but man my nephew has been here while his wife has been working . when he picks his wife up from work they do not want to leave. He will be getting a job shortly. He was laid off his last job and that is where they started having problems. I mean I feel bad for them and I am trying to help them out but I like my privacy you know what I mean?
Our friends little girl Addison with SMA Type 1 is having trach surgery this week. Many prayers for her and her family. I am hoping this will be what Addy needs to help her. Some kids get to a point where they need trachs and sometimes NIV does not always work for them.
Here is some of the President Obama's plans and I so much believe in his words to help us through these rough times to help us get back on track.
President Obamas words on siging three executive orders last week:"So I'm going to be signing three executive orders designed to ensure that federal contracts serve taxpayers efficiently and effectively. One of these orders is going to prevent taxpayer dollars from going to reimburse federal contractors who spend money trying to influence the formation of unions. We will also require that federal contractors inform their employees of their rights under the National Labor Relations Act. Federal labor laws encourage collective bargaining, and employees should know their rights to avoid disruption of federal contracts.
And I'm issuing an order so that qualified employees will be able to keep their jobs even when a contract changes hands. We shouldn't deprive the government of these workers who have so much experience in making government work.
We need to keep our energy focused and our eyes fixed on the real measure of our prosperity -- the success of folks that Joe and I have met across this country who are working hard each and every day. I'm eager to see this task force in action. I'm eager to discuss its findings with Joe Biden. And working with the people in this room, I intend to get this economy on track, to create the jobs of the future, and to make sure that the American people can achieve their dreams not just for themselves but for their children."
We believe in miracles!!
www.our-sma-angels.com/elizabeth
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1 comment:
I love those pictures of Lizzy (very cute) And Im with ya on watching football, I only watch the super bowl to see the commercials too. I hope Dawn can stay down and hold off on having that baby for a few more weeks (sending her prayers!) How exciting a boy!!! I bet your all getting excited!!! hoping you all have a great week Sheila
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