Savanna Update
October 25, 2004 by · Leave a Comment
I hope this email finds everyone doing well and staying healthy. As usual, I am behind on a Savanna update, but I wanted to wait until all of her latest appointments were done before updating everyone.
First things first, it looks like we will reach our goal of $35,000 for the fundraiser. Yea! I’m still waiting on some grants that should pay in December, but at this point it looks like we will finish at $35,000. While I had anticipated possibly changing the fundraiser next year to support MDA, we have decided to keep with FSMA. I have been disappointed by a few things I have learned about MDA over the last month and just feel like our money is better served by going to FSMA.
Savanna is adjusting to school well. She did miss an entire week a few weeks ago due to a runny nose, but the great news is she never got sick. We did not have to start her on steroids or antibiotics, so I am encouraged that her little immune system is finally getting stronger. Praise God for another sign of healing! She is doing great with her back brace (like we ever doubted that?). She even asks for it at night when we are getting ready for bed. She saw her orthopedic doc a weeks ago and he is happy with her results. He said that his initial x-ray showed her to be at about a 77 degree curvature (something I had not known; remember that there are certain details that I feel would not help me to know). He thinks her curvature is about 70 degrees right now, so the back brace appears to be helping her. The other good thing is that she is still flexible. It is when the scholiosis becomes fixed and rigid that they start to worry about getting surgery done. From my standpoint, the back brace is wonderful. Now my little girl can sit up in my lap and I can even sit her up on the couch. These are things that she could not do before, because her trunk is so long and she would fold over like an accordian when trying to sit her up. Now she can sit up in her bed and look at her Dora book and she feels like such a big girl. It’s hard to believe she is 3 years old. The whole first year of her life is pretty much a blur to me, right after the diagnosis at 8 months. Even after 2 years of living with SMA, I still have things that are hard for me. Savanna went to a Princess Birthday party a week ago for her friend Alexandra. As we came in and saw all the little princesses sitting around a table, it was hard for us because Savanna’s wheelchair sits up so high that she is a few feet higher than the girls. It makes it one of those times when Savanna is happy to “observe” rather than participate. As I struggle to get her out of her chair and in a comfortable position so she can be a part of the group, I realize that she already thinks she is part of the group. It’s always how I perceive things, but Savanna sees things differently. The things that make me want to feel bad for her, she is perfectly content with. She is such a blessing and always shows me that it’s all in how you look at things. The party went great and although I was exhausted from trying to position her, she really enjoyed herself.
As for her lungs, she is still on the stupid ventilator. That’s right, I said stupid! I’m so tired of living with this new appendage to her body. I’m ready to tell it to take a hike, but she still needs it. Unfortunately with the runny nose and the weather, we again don’t try to wean her off right now. Her pulmonologist said that her right lung is still showing some area where it is not expanding. She will see her again in December and if it does not look better, she wants to schedule a bronchoscopy where she will go in and look at the lung and try to get it re-expanded. Right now we are still seeing her every other month. I don’t know what to think about her lungs, I just keep believing we will again by ventilator free someday. Life was so much easier when she was not on the vent all the time!
Tim still likes working for FedEx and the benefits are wonderful. Our new insurance company bought Savanna a new ventilator after I called to find out what to do about a service contract on her old one. I was concerned because of her being vent-dependent right now and the other vent was old and the warranty had expired, so they bought a new one to allow us to use the old one as a backup. They even pay for her formula! He still is only getting about 26 hours a week right now, so that makes it hard financially. If anyone knows of any part-time morning work he can do, please let us know. We know that FedEx is where God was leading him to be, it’s just hard to keep trusting in what we don’t see with him making 1/2 of what he used to make. But He always provides and we are thankful for that.
I continue to ask for your faithful prayers for my family. It has been over 3 months now since we lost my brother and I keep wondering when that feeling of I’m going to see him again soon is going to go away. I don’t know at this point if it is a good thing or not a good thing. We were so active in each other’s lives that it leaves such a big hole in all of our hearts. I am simply amazed at how wonderfully strong and brave my sister-in-law has been. They would have celebrated their 19th anniversary just a few weeks ago. Adam is trying to decide which college to go to next year (and not that we’re pressuring or anything, but don’t you all agree that A&M would be a good fit?). Bailey is adjusting to being in middle school and dealing with all the twerps that come along with it.
My other brother, Mark has had his fair share of heartache the last month as well. They lost Lee’s mom (his mother-in-law) in September and just recently found out that Samuel, their 2 year-old is probably autistic. They are scheduled to see the neurologist in a few weeks so please keep them in your prayers. As the holidays are approaching, we know that it will be hard for us this year but are so encouraged by all the lives that have been changed by my brother Mike. We have seen lives given to Christ and relationships restored and that is what life is all about. We feel so blessed to be loved and supported by so many people. Tim and I are headed to Tampa in a few weeks for a dear friend’s wedding. It will be hard for us to leave Savanna for the weekend. We have not been able to leave her since she was diagnosed with SMA. We have each had a few separate trips, but it is just too difficult to have us both gone at the same time with all of her medical needs. I know it will be nice for us to have the weekend to get away and not have to be so “responsible” for a few days! If we don’t make it back, better check all the jails in the Tampa area; we might have had too much fun! 
LOL
I’m attaching a picture of Princess Savanna from the party. She seems to think her wheelchair is her chariot and that Tim and I are the drivers, as she has no desire to learn to driver her power chair. Just like any other kid, she does not even appreciate all the work I did to get her that power chair! We are waiting for get an appointment at Scottish Rite for the wheelchair clinic so they can evaluate her. I still think it is an issue of it not fitting her properly. For example, we have to put a stuffed animal under her arm just so she can reach the joystick. I think it just takes too much effort for her to try to drive it right now, but hopefully Scottish Rite can help there.
I’m signing off for now. Sorry about the Rush family biography. Your eyes are probably crossed by now! Thank you for continuing to pray for all of us and for sweet Savanna’s healing.
Love,
Mindy