Thank You for Your Prayers
July 18, 2004 by · Leave a Comment
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
Mike’s Memorial Service
July 13, 2004 by · Leave a Comment
Hello. I just wanted to give you all the information for Mike’s memorial service. It will be held this Friday night at Northwood Church at 7:00 pm . The address is 1870 Rufe Snow in Keller. I believe it is at the intersection of Rufe Snow and North Tarrant Parkway .
All of our families’ churches have been so wonderful in supporting us during this difficult time. It is times such as this that make you appreciate so much having a church family to help meet your needs. As I went to the lake house today to gather some pictures of Mike for his memorial service, there was a swan on the water on our property. I have never seen that swan in all the years I have been going to our lake house. I am so thankful that my brother sent me a swan to remind me that he is still very much with us and that he is in a wonderful place. It was a very peaceful sign to receive.
As for his services, his wife and children have asked that in lieu of flowers, donations be made to one of the following two organizations that Mike was passionate about:
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Northwood Church water well ministry. As most of you know, Mike was so excited to be a part of the water well ministry to help people in third world countries have clean water to drink.
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Families of SMA in honor of Savanna Rush: Uncle Mike was crazy about hisSavanna Banana (as he liked to call her). He was instrumental in planning her fundraiser and and a big part of her life. We find comfort in knowing that he will be watching over her from heaven above. I asked her tonight if she could see her Uncle Mike looking down from heaven and she just looked upward so intently that I often times think she truly sees her guardian angels. You may mail donations directly to Families of SMA at P.O. Box 196 , Libertyville , IL 60048-0196. You may also go online to www.fsma.org
We again want to let you know how much we appreciate all the prayers being lifted up on our behalf.
Love,
Mindy
Savanna Update
July 7, 2004 by · Leave a Comment
As usual, I am way behind on sending a Savanna update. I don’t know where the time goes! Savanna is doing great, although she is still on her ventilator quite a bit. We have only weaned her down to about 5 hours a day off the vent.
She did see her pulmonologist a few weeks ago and she said that is to be expected from the type of bacterial infection that Savanna had. She said it would take quite some time for all of the bacteria to get out of her body and for her lungs to heal. It’s been a little over 3 months now since she was ill. She also saw her neurologist a few weeks ago. Nothing new there except that she does hope to be able to do a clinical drug trial by the end of the year. She has applied for a $1 million grant and is waiting to hear on that. If that does not go thru, then she already has a drug company that has committed to donating the drugs to do a different drug trial. Both drugs seem to show promise in treating SMA. Her research nurse was very excited about the progress they have made over the last 4 years.
We have finally gotten her power chair back with the joystick attached. They have told us that she’ll probably only tolerate about 15-20 minutes at a time in it for now. They have to build up their strength and tolerance for being in a power chair and it could take a while for her to learn to drive it. Just like you would not expect a child to walk overnight. She has done pretty well, though she’s only be in it twice so far. I think she will do much better with the joystick. She was spinning in circles yesterday.
We have been able to take her to the pool lately and she loves it. She doesn’t get in the water for much. Only about 5 minutes at a time because I have to take her off the ventilator. She does well at home off the vent, but you can imagine the air outside right now is so thick and hot, it makes breathing more difficult for her. She is so happy to watch others play and swim. I sometimes think it must be hard to always “sit on the sidelines” and watch everybody else have fun, but it doesn’t seem to bother her one bit. She is perfectly content watching others. We took her to the SOKOL a few weeks ago and she loved watching the little girls do gymnastics. One of the blessings of having SMA at such a young age is her not knowing any different. She knows she is different from everyone else, but she also knows that she is loved just as she is. She loves the little girl that lives next door to us. She is 9 and comes over daily to read her books and play with her. I get such a kick out of watching her play with her and find it humorous when I am “kicked out” of her room. She thinks she is so much older than she is. They were making a “pretend” birthday cake last week and she would give me and herself “pretend” bites.
The date for her fundraiser is fast approaching. We have moved it to Sept 11 and are expecting a huge crowd again. We are currently accepting donations for prizes and have started selling tickets. Please let your friends know if they own a business or have a contact for prizes.
I am taking Savanna for a 2nd opinion regarding her scoliosis at the end of July. Please pray that this doctor will be able to “think outside the box” and come up with some type of bracing that might work for Savanna. I truly believe the scoliosis is interfering with her breathing and have had some positive feedback from other moms of children with SMA type I. As for now, we just try to position her the best we can to keep her straight, but the taller she gets, the harder it is to get her trunk straight.
We continue to ask for your prayers for her continued healing and as always, for a cure for this dreadful disease. It is so exciting to see all that is being done right now and how much closer they have gotten just in the 2 years that we have been living with it. As I get on the FSMA website daily and see how many children lose their lives to this in their 1st year of life, I am in awe that we still have our angel with us. She continues to be such a blessing to our lives.
As for Tim’s job, he loves working at FedEx. He’s also lost about 15 pounds from all the hard work. He will be in classroom training all next week and we hope that he will be able to get a courier route soon after that. Please pray for a daytime route to open up for him as well. I am so excited that we only have one more COBRA payment before we are covered under the FedEx insurance. That will be somewhat of a financial relief for us.
We hope to see you all at Savanna’s fundraiser. If you need fliers or other info, please let me know. We have already sold 2 sponsor tables. I am attaching a picture taken on Friday of Savanna playing with Kaitlyn, our neighbor. It is such a sweet picture!! I hope everyone is doing well and as always, we appreciate your daily prayers.
Love,
Mindy