Thank You for Your Prayers
Hello everyone:
First I want to thank you all again for the prayers for my family. While we are still grieving the loss of my brother, as we will for a lifetime, I can tell you that I am amazed at how strong everyone is and how well they are doing. We know there will be rough days; I have them myself. But we know that through God’s grace, we will get through them. It is so inspiring to see the lives that have been changed because of his death. We know that God never wastes a hurt and can use any situation for His good. At last count, there were already seven people who have given their life to Christ because of Mike’s death. We also found out that the day of his memorial service was four years to the date that he had recommitted his life. Just another sign that he had indeed fulfilled his purpose and God was calling him home. Please continue to pray for for our family. His wife, Kelly, requests that you specifically pray for wisdom for her, as well as strength, comfort and guidance, as she prepares to take on new roles.
As for Savanna, some of you know that today was her appointment for a 2nd opinion regarding her scoliosis. I had prayed that I would leave feeling encouraged and I must say I feel very encouraged. This doctor is not a big fan of bracing SMA children, but he is in agreement with me that we should at least give it a try. There is a new soft brace that he thinks might work for Savanna. He doesn’t expect to dramatically improve her spine, but if we can at least “hold” it to prolong surgery, that will be a benefit in itself. He also is NOT a proponent of doing halos or any type of traction device. Once I heard him say that, I thought, okay you can now be her orthopedic doctor. Not that the other doctor was wrong; just a different school of thought. We have another appointment 1 month from now and she should have her brace by then so he can check her in it. He feels she might not tolerate it while sitting in her wheelchair, but if she can at least tolerate it for a few hours a day and work up to sleeping in it, that would stretch her spine and give her right lung some much needed relief.
After we left his office, I decided to take Savanna by the ICU unit to say hello to all of her nurses. The social worker there approached me to ask if there was any type of SMA support group, as they had a newly diagnosed SMA patient in ICU. Her parents are having a hard time (understandably so) and they have not been in touch with any other SMA families. I was able to go over and meet the grandmother and see the child. The mother was away. She is a beautiful 13 month-old little girl. The grandmother said her daughter would be so sorry to hear that she had missed as, as she had already heard all about Savanna and had even read about her on the internet. I gave her my information and told her to have the mother call me. The little girl was diagnosed at 7 months; she is a Type I/II (probably much like Savanna — a strong I/weak II) and has been in ICU for 2 weeks. She is intubated and the grandmother said she was there due to aspiration. I told her we had been there before due to the same thing and she seemed encouraged to find out that Savanna had “lived” thru that more than once and is doing well. I know that was no accident that I just happened to go by the ICU today.
On another note, we just found out on Friday that another little girl that we knew with SMA had passed away. The family lives in Utah and we met them last year at the conference. She would have been 4 years old on Saturday. It was another “freak accident”. She wears a bipap mask to help her breathe. Her monitor had accidentally gotten turned off and the Bipap machine got unplugged. She was watching TV with her siblings and no one even noticed that the machine had gotten unplugged. When her dad came in to check on her, she was already gone. It just reminds us that we never know when our time will come and how lucky we are to have each day. I went in Savanna’s room that night and just cried while I watched her sleep and thanked God that he has allowed us to keep her here with us for another day. I am so thankful for the joy that she has brought us and the wonderful things that she has taught us. We were so devastated to hear of this other little girl losing her life, as she had been healthy. She was hospitalized at about the same time this year as Savanna was with pneumonia and I had followed her thru her mother’s emails. Please pray for her family, the English Family. She had 2 brothers and a sister.
The valproic acid drug trial seems to be going very well. I spoke with Kathy, Darrell Alan’s mom the other night. If you remember, he has been on the valproic acid drug trial for several months now. She told me that he rolled over 5 times the other day! Completely rolled over. That is a big step! We are so encouraged to know that this drug seems to be doing something. She said he will go back to Utah in a few months and they might put him on another drug in addition to the valproic acid. We are still hopeful that Savanna will be able to participate in a local valproic acid drug trial by the end of the year.
The date for her fundraiser is quickly approaching. Please mark your calendars for September 11. If you are interested in coming, please let me know. We are expecting another huge crowd and we will be limited on the number of tickets we can sell. We’ve already sold 5 sponsor tables and have another 4-6 in the works. Also, we are still needing prizes so please contact me if you have anything you would like to donate. We raised approximately $25,000 for research last year and our goal is $35,000 this year. I hope to see you all there.
Again, we just thank you all so much for continuing to pray for our sweet Savanna and my entire family. Although “sweet” Savanna has been getting in time-out on a much more regular basis lately. I think she’s starting to enjoy it!!! I will let you all know how she does when she gets her back brace. Please begin praying that she will tolerate it well and that it will help to straighten and lengthen her spine.
Love,
Mindy
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