Wednesday, April 11, 2012

Things are changing - Living with Spinal Muscular Atrophy Type1


Lizzy is doing a lot better.
 Its was strange but long week,  last week.
Christen is on" HIGH STRESS" level. She will not let Lizzy fall asleep with out bipap and makes her go to bed hours earlier than before. I sleep with Lizzy and do  all her treatments so its been a hard adjustment for me. I get my work done around the house when Lizzy snoozes on the couch a hour or so before bedtime. That, was the routine. Lizzy will not let Christen do her treatments after we got home from the hospital. So, I am getting way too much sleep for me. My whole life its been 5-6 hours a night and I was ready to get  up. In turn I am tired all the time now!! I get less done and I feel like I am being controlled by my daughter and that does not sit well with me. I am also on STRESS ALERT status too
My younger sibling Milinda is home trying to get her father ( My stepfather) in a nursing home. She has NOT discussed anything with me at all. She had plans to put him in the nursing home and get a trailer and take EVERYTHING back to Kentucky with her. That would of been fine if she did not have 4 other siblings and our mother. I am not going to comment too much on that situation but...... I did tell my mom I wanted her to make sure I got pictures.  I have grown older after I was given things from my grandmother when she went into a nursing home and the items were removed from my car by my stepfather years ago I decided at that time material items do not mean much too me. Its family that means more and memories.  So, I am sitting back and watching to see what goes on with my mom. I just want her to be taken care of and get what she needs. I guess they are putting my stepfather in her room at the nursing home and mom is not happy about that at all.
Easter was good. We went to Dawn and Jeff's. Lizzy did very well. It was a good day.
Paul has still not been able to get a job and went to see a lawyer today about his social security denial. He said he will take his case but its going to take some time...... He has to refile.
I am not sure what is going on with Christen after Lizzy's last hospital stay but she is staying home more. She is emotional and keeps worrying about Lizzy. Its like she is over careful with her now. Lizzy does not like it either. We are thinking because her back got so bad in the hospital from laying on the one side watching the door Lizzy might need to spinal surgery this year. Something I do not want to think about. Her lungs are fine but getting her back to what it was before this past illness has been hard.
Lizzy is getting new power chair eval the first of May. I am so excited. She has out grown hers.
So many changes going on. Not sure if they are all good but life as we knew it has changed forever.
Many prayers for Lizzy's BFF Sophia Salus. She has been sick.
Thank you for all the prayers they worked and keep them coming!!
Thank you all for the wonderful cards and gifts while Lizzy was in the hospital!!
You made us feel so cared for and loved!!
" We believe in miracles because we live with one!!"
www.our-sma-angels.com/elizabeth


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