Savanna Update
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
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