My home computer has not been running well...... I cleaned it totally out and still issues. I have been having issues for WEEKS!! I could not hardly do anything on it. I feel so out of touch!!!!! No , virus it was some issues with the reg. files among other issues. I feel so confined when my PC is not working right. I don't know what happened but I think I fixed it finally. Its getting old I guess. I was actually feeling totally isolated with not being able to use it much. I would get online for about 10 min's check my emails and try to post on my face book and other web-sites then it would FREEZE... So annoying... I would run my McAfee maintenance programs and clean it out EVERY day and still nothing worked. Grrrrrrr So, that is my excuse for not updating, Sad, but true. I spent a few hours on it today and I think I finally got is running right. whoooooo hoooooo . Elizabeth was working on her computer being entertained by "Arthur" right next to me.
Its finally going to be bearable weather tomorrow I guess. This cold weather makes my bones ache!! My skin is so dry right now you would think I had alligator skin. eeeewwwww. I do not think I have ever been so cold for this long. brrrrrrrrr
Lizzy is doing great. I do not want jinx myself on that one . Every time, I say that we have issues with in a few days.( Pouring a little salt over my shoulder for luck) I have to let people know she is doing great since we are still living in our SNOW GLOBE( Bubble) and no one has seen is . She is such a great kid. She is my heart. No longer can we SPELL things out in front of her . She KNOWS what we are spelling now. It may take her a few minutes but she figures out what we spelled.
Elizabeth is has been learning and boy has her vocabulary expanded. Oh Boy..... you will not believe some of the things she says. She loves all her wonderful Christmas gifts. Oh and she had gotten a shirt for Christmas that said "Let it snow" and she wore it the day it snowed here 6 inches last week!! Too funny she says it because she wanted more snow and she wore her shirt that says "Let it Snow"
Its so great to have friends that actually care so much about you. That truly care. I feel so lucky to have good honest caring friends in my life. Thank you!! We love you and miss you terribly!!
We have been trying to warm ourselves up around here thinking about the summer and plans. Its not working . My finger tips are freezing as I peck on my pc. We have a few trips planned. We were going to let Lizzy go to MDA Camp with us but.... the MDA will not let both Christen and I stay the week with her. Okay.... I realize that is a lot to ask for both of us to stay but my fear of the area Trama hospital and taking care of Elizabeth in a crisis situtation is still very much still implanted in the my brain. It was a nightmare in March of 2005. Until, they finally "get" how to care for a child with Type 1 SMA like they do in Madison,WI we value Elizabeth's life too much to chance even putting her in a situation like that. I do not think that will ever happen. It will be very hot in July for Elizabeth here and always has been. The camp here is in July this year. I am afraid she will over do ( even though she says she is fine) as she has the past few years and have issues. Nope.....No discussions about it.... isn't going to happen. We just are not going take her. So, sorry this is not an option or up for negotiations. Am I wrong? We have worked to hard to get where we are today for one incident set us back. Not that anything would happen but why chance it.
We plan on a trip to Kentucky, two to CA and one to Minnesota this spring /summer. Christen and I are going with Lizzy alone to most every where. Paul will be in school.
Christen finally had a call from Easter Seals and ( Drum rolling ) they are going to evaluate Elizabeth for Swim therapy and OT in Feb. MY gosh. that is just so cool. We will still remain doing the MF release though. It works so well on Lizzy its worth paying out of pocket for it.
We did get some bad news our breast milk donor is going to be quitting. Its sad but she did Elizabeth a great honor by giving us her miracle gift of her breast milk. Its a food from God and helps keep Lizzy strong and growing. Thank you so much for helping Lizzy as long as you did.
Oh and I have been still on my diet!! I am hoping to continue eating this way forever.
Many Prayers for all the sick kiddos out there. MJ, Aubrey(Green), Dani , Shira , and many others !!
"We believe in miracles because we live with one" .
www.our-sma-angels.com/elizabeth
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