Above picture is my very pregnant daughter Dawn who just turned 30 the 14th. She is due any day her doctor has said the last few visits. Her baby's cord blood may some day help improve Lizzy's quality of life. She is saving her baby's cord blood for Lizzy. Christen, Lizzy and Dawn are all the same blood type. Could you imagine any greater gift to give? All my girls love Lizzy so much.
Thank you all for your prayers for Lizzy !! They are working!!
Lizzy is doing so much better. She still is not over her illness but is improving every day. You know she is feeling better as she is fighting me on extra treatments now. I still have not let her in her power chair but maybe tomorrow. Christen has actually been reading to her and that has helped so much. She had me very worried this time. I was so scared it was RSV.
Paul is feeling great but driving me crazy being home all week. He is a "TV Station Flipper" (my pet peeve) and always wants something right when I have three things going on at once. I am just glad he is not sick like last week with his mouth infection. All teeth are gone and he says he has not felt this great in 10 years. I have not hardly talked on the phone or been on the computer much at all this week.
The trip to Stanford is getting closer and closer. The auction for my husband's work place is closer and closer...... What will March bring to our lives? hmmm?
Ever feel like you are so stressed out you when you go to bed you can not shut your brain off because you have so much going on you are still thinking about what you have to do in three hours? That's me. Thinking always.... about Paul's Job, trip to Stanford, paying bills, sick friends and Lizzy. Thinking where will we be next year? I do not sleep much anymore. I am getting older and its getting worse. I see the wear on my face with the added wrinkles this year. Lizzy is worth every second of worry and every wrinkle she gives me. Her strength and how she thinks is amazing. It seems I know what she needs when she needs it . She also will tell me what she needs. Its seems I have learned so much in the past 5 years. I have phone calls all the time from people I have met and Lizzy has inspired. We do not give up and some people admire our determination to keep doing what we do. I just wish I had a way to fly all over and teach all these parents everything I know.
A few short years ago we would only look at each day and now we can look at the future. Lizzy's docs, NIV Respiratory protocol, the trial drug(HD), Amino Acid diet with donor breast milk, the oral albuterol, the stretching , the swim therapy, the speech therapy, the not giving up and the power of prayer all have gotten us this far. Plus, the many wonderful people we have met dealing also with SMA in some way or another.
You run in to people who just do not get it and are non believers. All we can do is pray for them. The AA diet works and everything we do is working.
I need to figure out how to convince the newly diagnosed families that we are not crazy in what we do and the hope and the determination we have.
Many Prayers for MJ,Jake,Ally,Sydney Lizzy and all the sick kids.
We do believe in miracles!!
www.our-sma-angels.com/elizabeth
2 comments:
Well said, as usual, Jeanna!
Thanks Barb! Can you tell its been a heck of a week?
Post a Comment