This has been the most emotional last few weeks of my life besides the day Lizzy was diagnosed.
Christen, Lizzy and I came to Madison Saturday Nov.10 evening for Lizzy to be admitted Sunday at noon for her Spinal Fusion at 7:30 am on Monday Nov.12. We spent the night before at the Ronald McDonald House.
Home now and looking back I wonder how I got through this past week. Well, I guess I know...lots of prayers from friends, family and many myself. Believing in miracles is what its all about. Divine Intervention.
Lizzy went from a 93 degree curve to a 47 degree. Her last few growing spurts since August were a surprise to all of us. Her Curve had gotten so bad and she just started to complain about it. The best Ortho surgeon for SMA kids in the world is DR. Matthew Halanski ( American Family Children's Hospital in Madison,WI ), He is "Superman". What he did for Lizzy is like a miracle. She had the worse curve than any other SMA child he has ever done.
Lizzy has exceeded the all doctors' expectations. She went through a long twelve hour surgery.It was supposed to be eight hours. There was some unexpected delays in the surgery. During the surgery all of a sudden I had this weird feeling something was wrong. I blame it on intuition . Christen went back and asked the nurses and they said Lizzy was fine... still I felt something was wrong . I asked for prayers for her from all of our friends. I was right on with feelings I was having that something was not right. Well , what we found out after that there was a problem with one of the pins on one-side of her rods. It broke. So, they had to customize her rod on one side. Her blood pressure had dropped a few times and after she was in her room recovering it was from one of anesthesia meds that was causing it to drop. I was so upset and kept on them about her very low blood pressure and after the IV with the med was stopped her blood pressure went back to normal with in seconds. She had to have 2 pints of blood also. I knew that was not right with her blood pressure dropping like it was. Then,seeing her little swollen body hurt my heart. But she quickly improved!
The nurses and all the doctors were so good to us. Lizzy was a hit with her nurses and docs with her sassy self and her determination to get better. Love that kid!!
DR.Schroth told Lizzy she has done "Fantastic" and only explanation for her doing so well was that she was "Just Lizzy". LOL
The top picture is the day she was extubated. Pretty amazing to say the least!!
Here she is in her power chair the day after she was extubated and the next day.
She has done so well. I do not think I could bounce back that quick. DR. H was able to get her to 47 degrees from 93 degrees because her bones were so much more better than they expected. She has been on Vit K2 extra cal citrate and D3 for a very long time besides the donor breast milk she has been on since she was 2. It has all worked. Plus, she is alkaline in her diet also which helps keeping her bones strong. She did leave the hospital slightly anemic but DR,Schroth said I would fix that with her diet like I always do to help that better than any med could do. That was a HUGE pat on the back. Guess, I know my stuff, Huh? I guess DR.Schroth knows that too. (Chuckle to myself)
Lizzy is healing and having some discomfort but, doing well. Sitting up so well she looks like she grew 5 or more inches.
Thank you for all the balloons and ecards. She loved them!! I think she got close to 50 ecards
We went right from Madison to Dawn's house in Lexington for the night. My girls volunteered me to cook the next day.( Oh yay) I sat on the edge of the back seat since there was no where for me to sit for 4 hours.Stopped once for pee break. At least we made it back with out any issues. Lizzy is so long she takes up the whole back seat now! We had a full van of Lizzy's stuff.
So, Thanksgiving day I started at 7:15am cooking with a huge breakfast of biscuits sausage gravy, fried potatoes and German pancakes. Then, I cooked all day for Thanksgiving dinner. I was beat by the time everyone arrived. Up all week around the clock turning Lizzy all night then coming back to cook for 34 people was not something I had planned. It was great day though besides the fact I made my first ever lumpy gravy and a tip from a friend to use a hand mixer on my lumpy gravy and it worked!! All and all it turned out a very good day. My brother Rory and his wife Carlene had come home from Kuwait for Thanksgiving. It was friends and family. Love that we can all get together. Dawn's house is huge so we all fit!!
Lizzy below the day she left the hospital.
Great Great Grandma Janet and Rylee
Keep Lizzy in your prayers to keep recovering well.
Happy Holidays!! We have so much to be Thankful for!!
Please say prayers for two SMA children who will be having surgery in the morning. Prayers for Dani and Sohum
Thank you!!
"We believe in miracles because, we live with one!"
www.our-sma-angels.com/elizabeth
http://www.aadietinfo.com/
