Its been a crazy last few weeks. Besides, 3:30am phone calls from my mother complaining about her nurse's aids, appointments for Lizzy and Paul was FINALLY released from the doctor and trying hard to get a job. So, I am home alone with Lizzy a lot and trying to even get a shower is huge chore. Sigh..... Got to love her.She keeps me hopping and focused.
As, of Dec 2nd she will be in swim therapy every other Friday with PT and OT will do land on the other Friday. So, once a week she gets PT, OT , speech and as of now Myofasical release. These things she has needed . I do what I can with Myofasical release and stretch her every day but since she quit swim therapy I have noticed that she will NOT sit in her power chair like she was. She seems stronger some days and others what little muscle she has seems tight. I guess you can say she is "High Maintenance" LOL She is worth every minute of every day I spend with her. She is too funny. They other day I asked her " if she needed her nose cleaned out and she said Yeah " I think there is a Bear up there!" I laughed and said, " Oh really!!" I cleaned it out and then she said "There was bear up there that ate a rabbit and then the bear pooped all over" Where did that come from!! She has such a cute personality. Ewwwwww Gross! So funny!! She looks forward to her teacher Becky when she comes that she watches out the door until she sees her walk of the ramp. I have been hearing her tell stories to her and just laugh. She is something! She is still shy when she meets somebody new. Then,once she learns to trust you she until you get to know her she talks and talks and talks!! She makes life with living. She makes dealing with the stress and hurdles I have to jump daily a lot easier to get through.
Not sure of the future for the four of us Paul, Christen , Elizabeth and I in this terrible situation we are in financially but I know I have to take care of this family. Might have to sell our house, I might have to take on a part time night job but I know I have done everything to keep what we have. I have learned to live with in our means but recently its looking really scary. The savings that we have struggled to keep is gone.The bills have been maintained until this month. Its been extremely hard since July. Next month looks bleak, but.... I believe God will get us through this. My friends are the best ever I have had and they have some powerful prayers. I think the Christmas season will be the worst ever to get through but.... we will no matter what sacrifices we have to make but we will get through it!!
I need to be making Christmas bows and selling them because Lizzy's account has been used for her Myofasical and some medical supplies that her insurance does not pay for has been dwindling down too.I guess the Roller Derby Girls heard about Lizzy and offered to help with a benefit. Is that not cool or what? Lets hope it follows through!!
Paul figured out what was wrong with van and it running again!! YEY!!It was a broken spark plug!!After all the "Drama" that caused besides the money that was paid to fix it. Oh my... Its BEEN A crazy last few weeks.LOL I can chuckle now.
Prayers for Sophia D, Nick ,Emma, Jerika, Stella and MJ for fast recovery. Keep us in your prayers to stay healthy and to be able to get through the fall and winter.
Thank you to all of you that are in our lives. Love you all
I know I am repeating myself here but:
Families !! Please!! if you have a child with SMA please visit your local fire dept and ambulance services. You need to introduce them to your child you and write daily resp protocol for healthy times and acute illness times. Let them know who you are and all about how your care for your child with SMA . You need all this in place in case of an emergency situation and need their services. Make a scan disc of all vital info and carry it with you at all times and update it. Get acquainted with you community . No matter how old your child is 6months to adult you NEED to do this.!! You can NOT always do this at home. I also suggest having supplemental O2 at home. Please listen to me. This info can save your child's life. You can NOT always "just do it at home". Invite them to your home if your can not get out to meet with them
"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth
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