Summer School
July 10, 2005 by · Leave a Comment
I hope you all are having a great summer. It’s hard to believe it’s already halfway over. Savanna has been going to summer school, but she is out this week. She goes Monday thru Thursday, half days. She has been going to the pre-K class instead of the PPCD class because she really needed to be challenged more. In the pre-K class they learn things like days of the week, seasons, weather, etc. She loves being in that class. It’s nice to sit in there and watch how the other kids interact with her because none of them are handicapped. She loves to show off driving her power chair. She did something the kids thought was funny and it was like I could see the light bulb go off in her head, the “Aha, they think I’m funny; wait till they see what else I can do” look. Her regular school nurse that takes care of her is in Ireland for the summer, so she has a different school nurse. Savanna really likes her as well.
We have decided to move forward with scoliosis surgery. Once I was able to think rationally about it, I decided, why wait? She’s going to need it in a year at best. Well, summer is almost over and then it won’t be long until we are in respiratory season. With her scoliosis already as progressed as it is, I can imagine it would only do her more harm to wait. As her orthopedist put it, waiting to let her grow some more for surgery will allow her more growth, but she will only grow crooked, so what’s the point? As I prayed about which type of surgery would be best for her, God made it very easy. Our choices were 1) titanium rib; this would be a rib that would attach to her other ribs and would help correct the scoliosis; it would need to be lengthened about every 6 months. 2) growing rods; this would be 2 titanium rods that would go down either side of her spine and attach at the pelvis and then somewhere closer to the top of the spine; they would also need to be lengthened about every 6 months to allow for growth. 3) complete spinal fusion; this would also involve inserting 2 titanium rods down either side of her spine, but it would be fused which means a one-time surgery, but she also would not have any more growth in her trunk.
We saw her orthopedist last week and the titanium rib is out of the question. Once we looked at how tiny Savanna’s ribs were on the x-ray, the concern is that either her ribs would break in the surgery itself, just from spreading her open or they would break as the titanium rib would be attached to them and pulling on her spine in order to straighten it. Evidently small weak bones are common for neuromuscular kids. So that leaves us with growing rods or complete spinal fusion. He is consulting with another orthopedist at Scottish Rite about a new technique for growing rods. That is my hope and prayer because I am not ready to do complete spinal fusion at the age of four. This would be considered a major surgery, as you can imagine. He estimates that she would have about 20% blood loss, so we will need to have blood donated ahead of time. She would be in ICU for approximately 5-7 days after surgery and the first few days would be the worst. With the amount of blood loss, they will need to monitor her blood pressure and fluids very closely. She will have morphine for the pain in the first few days to week and then will go to something like Tylenol with codeine. There is the chance of risk of infection from the rods, but he estimates that to be at 1-2%, which I find extremely low. I can’t allow myself to think of all the “what ifs” of surgery. I can only concentrate on how much better she will feel once she recovers and can breathe better and sit up straighter. She has taken such a growing spurt lately that she really is starting to look collapsed when she is in her chair.
We have scheduled the surgery for September 19th. Her birthday is September 16th and I wanted her to be able to enjoy her birthday before putting her thru this surgery. She will have the surgery at Cooks and it will be about a 5 hour surgery. I would like to ask that you begin praying for Savanna and for her doctor, Dr. Gray as well. I am praying that Savanna’s little body would strengthen and that she will have a supernatural immunity that will give her plenty of “reserve” and no infections, nor complications of any kind. I am also praying that she will amaze the doctors with how wonderful she will come thru surgery and for a speedy recovery. Please pray for wisdom, guidance and discernment for Dr. Gray. I feel very confident in him and feel comfortable leaving Savanna in his hands, because we all know whose hands she is really in. Please also pray that he will be able to do the growing rods, as he is still not certain he will be able to do that type of surgery.
Today is my brother Mike’s 1st birthday in heaven. We all went down to the lake tonight to just hang out and remember him, since that was his favorite place to be. It’s hard to believe it’s been a year, yet sometimes it feels like a lifetime since I have seen him. I can only imagine what kind of birthday parties they have in Heaven and how much he is enjoying being in his Savior’s presence. I just got back last week from my trip to Mexico with my sister-in-law Kelly and friend Dawn. We had a great trip and I want to thank you all for your prayers for us. The resort was beautiful and we enjoyed just being there, in the last place that he was before he departed this life. As I stood there looking out at the ocean and all the people playing in it, it was just so clear to me that it was his appointed time. People just don’t break their neck standing in water that is only knee to hip deep. Kelly was able to see some of the workers from the resort that helped her thru things last year and I think that gave her a sense of peace and closure to be able to thank them for their help. My cell phone worked down there so we were able to call home daily and I was able to talk to my Sunshine every day. She did great here at home with her Daddy and I was so thankful for the opportunity to get away.
We are now in the midst of preparing for Savanna’s third annual fundraiser. We are really excited about the changes we have made this year. We are going to a much bigger place, Will Rogers Roundup Inn and we are having a live band this year. I’m still amazed at how well we do with this. God has really blessed our efforts each year with the fundraiser and the amount of money we are able to raise. We have raised a combined total of $60,000 the past 2 years. I hope this year’s fundraiser will put us over the $100,000 mark. There are still several clinical trials that are going on involving SMA. Savanna has not qualified to participate in any of them, but that’s okay with me. I would rather them work the “bugs” out before we try them on Savanna. Our friends, the Coles (Darrell Alan’s parents) had a healthy, SMA free baby girl in April. We were so thankful for them that this baby was SMA free. Darrell Alan is doing great and is still on the valproic acid, the last I heard. You will see him and Matt Swinton in the MDA commercials with Daryl “Moose” Johnston.
Some other exciting news is the possibility of a Texas chapter of FSMA. There is a woman in Houston who has spearheaded this whole effort and is working diligently to get us at least one Texas chapter. I am hoping to have more SMA families at the fundraiser this year. I know that all of you really enjoy getting to meet the other children and their families. All the children has such a “light” to them; it just feels good to be in their presence. Also, Tim has started working a day route!!! That’s a big hallelujah and answer to prayers. He started last week and is really enjoying his new route. Not only does he get to work days, but he is getting almost 40 hours a week. Praise God! We have enjoyed getting to be a family again. Took Savanna swimming one evening last week and took her to the movies another. She loves going out now; does not want to be a homebody. I still struggle with children who just stare at her and do not respond when she speaks to them. I realize they are going to stare at her, but when she says “hello” in her sweet little voice and they don’t even respond, I just want to ring their neck. Why don’t parents teach their children manners for goodness sake? Luckily it doesn’t seem to even faze Savanna. I never make a big deal about it in front of her because I would never want to project my negative emotions onto her. She is such a happy, joy filled child that I would never want to steal her joy. She still loves to sing. I’ll hear her just singing away in her bedroom all day long. I think her favorite song is “Jesus Loves Me”.
I hope you all will make it to her fundraiser this year. As always, we are in need of auction prizes; please let me know if you can help in that area at all. I am attaching a copy of the flyer so you can pass it out to anyone who might be interested. It is open to the public and we should not be limited on space this year with our new locale. Thank you all so much for your prayers for Savanna and our family. In closing I would like to ask that you begin praying for her scoliosis surgery. As soon as I get her blood typed, I will send out an email as we may need blood donors. I’m looking forward to seeing a lot of you at her fundraiser. Also, her webpage has been re-formatted and I think you’ll like the new design. You may visit her at www.SavannaRush.com
I hope you all have a blessed week!
Love,
Mindy