"These pictures are so precious to me .I wanted to SHARE these again . To me these picture represent HOPE,STRENGTH, PERSEVERANCE, BELIEVING IN MIRACLES, BELIEVING IN YOURSELF AND SUPPORT FROM FRIENDS."
Sorry, its been awhile since my last update.
Its was quite busy around here and quite stressful for awhile and I think I should not post if I can not be positive. Things are better now.
Lizzy has been doing pretty well and Paul is healing well.
I had the worst stomach flu hit me since 1979 a week ago. I was sick probably 48 hours and 10 hours I had the runs at both ends. Terrible stuff..... I cured my chocolate cravings because I had eaten a few chocolate truffles before I got sick and needless to say I no longer want chocolate at all. yeah!!ewwwwww
Elizabeth has been getting stronger doing more things and I do not know why. I am so happy. She is lifting her hiney up and moving her head more. She sat in her power chair WITH OUT her neck brace!!Yeah!!! She is such a miracle!! I have not done anything different so not sure why but, maybe its because I am so consistent on her care. I believe with all my heart and soul you can make a difference just being consistent on stretching, resp care, therapies, diet and the power of prayer.
Please also visit my friend Mary's web-site. http://www.aadietinfo.com/ Her daughter and her have been working on this web-site to help clarify the SMA AA diet and the correct way to use the diet and why we do the things we do. I believe using the AA diet enhanced with breast milk is why Lizzy does as well she does.
A lot has happened the last few weeks. Paul was asked to go back to his old job( and we got all excited and we did not say much to many people not wanting jinx ourselves. Thinking our strain of bad luck would change. Well, after a great interview and them saying all they need to do is get home office to approve and a drug test and a physical ( which we were worried about but.... he said he would be able to do his old job) the news is they HAVE NOT CALLED HIM BACK even for the physical and drug test. He has called and they have not returned his phone calls. Grrrr I pray about this among many other things. Something needs to happen quick!! He was denied social security last week. Got the letter in the mail. Now what? I need to stay focused and positive but its getting harder and harder but, when I see Lizzy's face all focus on being positive comes right back.
Hopefully, this year things will turn around for our family.
Prayers to all the kids that are sick. Healing prayers to the Gaynor family to get well!!
Keep Lizzy in your prayers.
"We believe in miracles because we live with one!"
www.our-sma angels.com/elizabeth
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
