Its been a heck of a summer so far. Yee hah!!
Lizzy has been one busy kid. Outside every day almost with Papa and doing well. Then, yesterday she complained of a sore throat and secretions like crazy. Her throat was a bit red when I looked at it. Last night, low grade temp and I upped her treatments, put her on her Miracle mixture of Breast milk, Pedilite, Tolerex and her supplements. Today , she started Zpack just in case. She has been doing pretty well, but the whining..... OMG.....she whines so bad it sends sharp pains to the middle of my ear. God knows I love Elizabeth with all my heart but man can she whine so badly when she does not get her way or doesn't not feel good.
We have been watching Lexy my great niece(since Jan) and last two weeks Corbyn and Caitlyn have been here also. Then, just to add more fun to my life we have had the next door neighbor Blaze(7) a few times and today my 13 year old grand-daughter Rachael. Yeah , I am having a fun summer. NOT!! The grand kids are fine but having Lexy and Blaze in the equation is enough to drive this old biker babe back to bar hopping and shots of Jack. ooooops did I say that? I am 50 years old and man..... this life I am leading I will not make it to 51 with all the stress. I need to fix this life style soon!! I see a job coming in my future real soon.
I just heard from a dear friend of mine that helped me so much with Lizzy in the beginning. Her daughter (born 1 day after Lizzy) earned her wings 5 years ago this month. She tells me of a family she has tried to help with SMA in her area. She actually knows them. She thought the valuable information she told them would help save their baby. The mother told her the info she provided was too over whelming months ago. Well, the sad news is they just took this baby home after a lengthy hospital stay and it sounds like they are going to let her go. My friend blames herself. YOU CAN NOT BLAME YOUR-SELF for trying to help some one and they did not listen to you. They chose this for their child and there is nothing you can do. I have beat myself when people have not listened to me. I would cry and my heart would hurt so bad. A very wise woman told me : "Not every one is like you . It takes inner strength to care for a child as you do and sometimes people just do not have that inner strength. You did what you could and gave them the info they needed. Its their child and it their choice the path they chose. You can not save them all but only help as many that are willing to listen." The woman was DR. Mary Schroth who told me that. Those words changed my whole way of thinking. I only can help those who want to be helped.
My prayers are with this family.
Please keep Lizzy in your prayers as I do not know what is going on with this illness she has gotten. I hope we kicked it before it turned into anything.
Many Prayers to the Doebbert Family this week. Andrea is about ready to give birth and if she has not had the baby girl by the 9th they will be inducing. Wish I could be there. Love you Andrea !!
I need to get myself to bed. My body and mind seems to be totally drained these days.
We believe in miracles because we live with one!!
www.our-sma-angels.com/elizabeth
2 comments:
Sorry to hear that something is going on with LIzzy. I hate the waiting game of are they or aren't they going to get sick.
I hear you on the people that don't want to be helped. A lot of people can't change their lives for another and can only live within themselves. There are very few people that volunteer and or help others in a selfless manner including their own children! It does take incredible will and endless energy to care for people with life threatening illness. It is very hard to watch as people choose the strictly palliative route especially when you know how great these kids are. As my grandfather used to tell me, "It's not how long you live but how you feel while your alive." From my experience these kids are joyful and live a life full of love and joy. What more can you ask for! Through all of my years of research and reading about quality of life the theme that is consistent throughout is that being alive has nothing to do with being healthy and that you can still attain your goals and live the best life you can. You deliver an amazing life to your gran daughter! I hope Lizzy feels well quickly.
Thank you Brad for your post. Things are going better today for her and me. We are here ALONE(well for a fews hours any way. She is playing on the floor with her Polly Pockets and is very content.
We were talking during her treatment this morning and she said "I know why I have SMA Nina. "I like Okay....... why? (Not sure where this was going.... )she says" God made me that way so People can hold me even though I am big and so I can drive my power chair and show people that I can". Then, she said "I think I am better and I am not that sick now ..just a little" She said "you know that Lady's milk you give me?" I said yes(still trying to figure what she is going to say next), she says "I think it makes me feel better. "
Alrighty, then out of the mouth of a 5 year old. You heard it here first. Donor breast milk must work according to Lizzy. LOL
Lizzy does talk extremely well and very opinionated.
I thought this illness was going to be usual 5-10 day haul but, she just has a stuffy nose now. Her air movement is great, Her O2 is great and her heart rate is slightly high only about 10 over normal She had plugged bad yesterday morning and junk in her chest. I have to clean out her nose soon as it get full(about 5 times a day last two days) she is fine. Got a bunch of thick gunk out of her yesterday.
So, I am hoping we stopped this before it got bad.
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