Busy As Usual
May 19, 2006 by · 1 Comment
Well I hope everyone is having a good May. Savanna is doing great….growing like a weed. She’s getting so tall that I told her pretty soon I’ll be able to just ride in her lap in her power chair. Her feet will be dragging the ground anyway, she might as well give her mom a lift! She saw her pulmonologist this week and she said everything looks great. We see her every other month but she said we will be able to go to every 3 months now. YEA! Savanna is scheduled for her 2nd scoliosis surgery. It will be July 27th. The plan is just to lengthen the growing rods, up towards the top. Hopefully she will do as wonderful as she did last time and go home after only a few days.
The Rush family is staying busy with all of our numerous projects. Savanna’s Snowcones is keeping Tim busy and he’s looking for more part-time help. In true Tim fashion, it is the hippest snowcone stand around that is all about the party. You know Tim; it can’t be just a normal snowcone stand. He has this big gazebo thing out there, a bounce house for the kids, a cabinet with a TV/DVD player in it and wants to fire up karaoke in a few weeks! I can only imagine next he will want to get his liquor license so he can serve real margarita snowcones (kidding). Being the big kid that he is, he already has his “Tim fan club” among the kids that come there. If, on the rare occasion that I am there, some kid will come up and just look heartbroken that Tim is not there. He gets out there and plays when he’s not busy and I told him he better watch out; it might turn into a babysitting service. I can just see the people, “Okay, here’s his snack for later, I brought him a change of clothes and we’ll be back in 3 hours to pick him up.” We do have a tip jar set up so that any of that money that comes in while either of us are working will be used for Savanna’s fundraiser. I think he’s collected about $200 so far.
On the fundraiser note, we are having a rummage sale this Saturday from 7-7 in front of the Chappell Supply in Saginaw. If anyone has anything they would like to drop off, please bring it over. Or if you like bargains, come on out and see what you might find. I will be happy to give you a tax deductible receipt for the donation. I would offer to have Tim come pick things up, but he’s a little too busy between FedEx and the snowcone stand. The money we raise from the rummage sale will be used to help cover expenses for the big fundraiser in August. Now, that fundraiser is August 12 at Will Rogers Roundup Inn. We will be doing the same style: dinner and casino with live and silent auctions. Please mark your calendars and let me know if you have anything you would like to donate for that as well. We have gone up on our ticket prices this year to $50 per person because our fixed expenses have gone up dramatically.
On the SMA forefront, things still look promising. They have several trials and research projects going on right now. Another family we know has a girl, about 7 months old, that was diagnosed at birth. She was diagnosed as a Type 1 and they immediately started her on the Valproic acid drug trial in Salt Lake City. She has shown remarkable strength. She can sit up for about 10-20 seconds unassisted. Typically, Type 1 children can never sit up on their own. Researchers think that getting an early diagnosis (at birth) can help prevent some of the effects of the disease. FSMA is pushing Congress to have SMA as one of the newborn screening tests. They should at least be able to find a drug that if, started early enough, could reduce or prevent any of the effects of SMA. For now, we just keep pushing for more awareness and funds for research.
I feel so blessed to have a child as happy and sweet as Savanna. I sometimes wonder if she would be the same if she didn’t have SMA? Last week my niece Erica, one of Savanna’s favorite people in the world, went to the snowcone stand with us. We just got there and Savanna looked at me and said, “I’m so happy!” Now if Bo Bice had been there, she would have been ecstatic. She has enjoyed watching American Idol this season. Her favorites were Bucky and Ace, but Bo is still the man of her heart. She loves to predict who is going home each week and when it was her Bucky, she said, “Ohhh, poor Bucky.” Still just as boy crazy as ever. She can spot a boy a mile away. And she prefers older men. From about the age of 6 on up to 40. It’s quite funny to see how much her face lights up and the smile spreads across her face when either Mr. Lance or Mr. Eric are taking care of her at church. Motor Mouth (aka Savanna) loves to sing and just keep her mouth running. We went to Hot Springs a few weeks ago for just a short family trip and stayed in this little one room cabin. Her bed was like 2 feet from ours and at 11:00 at night she was just talking away and Mama this, Mama that. I finally told her I was going to sleep and would not be talking to her anymore until the morning. She just said, oh, okay and then proceeded to talk to herself. She loved getting to go out of town. The weather was a bit cool but we stayed at a nice place right on the lake in the mountains. It was very pretty there. Savanna was content to just sit out on the porch and look at the lake or go see Honey Bee, the resident Golden Retriever. Unfortunately, Bo, her dog at home, is not quite that well behaved yet. I think the highlights of our trip for her were the horse and carriage ride around downtown Hot Springs and the old time family photo we had taken. She thought she was hot stuff in that long dress and cowboy hat. She loves wearing dresses and just starts giggling as soon as you put one over her head. She then tells me everyone that needs to see her in her dress so they can make a big deal about her. I was thrilled to know that her angels went along on the trip with us. She had not mentioned them in a while and one night she just exclaimed, “I see an angel…..I see another angel!” She told me all 4 had come with us and were in the van with us on the road. She’s driving her power chair more and gaining more independence and wants to “help” do everything. Tries to get bossy when she can get away with it. Just typical 4 year-old stuff, I understand. She still makes me tear up with her sweetness. When I tell her I love her so much, she says, “I love you so much too Mama.” And to hear her pray is always interesting. Still can’t quite understand what she is saying. She talks clearly all day long until it is time for her prayers. I think she wants to make sure only her and God know what she is saying; but she always ends it with an AAAAAMMEEENNNNN. She really likes to draw it out like she’s a televangelist. I just tell her, “you preach it sister!” She has been approved for a new power chair so we will be donating her old one to either MDA or FSMA so another family can use it. It will take a few months for the new one to be here, but she will have her communication device (computer) integrated into it so she can take it with her and it will allow her so much more independence. She will be able to turn on lights, operate electrical equipment, etc.
Other exciting news is the opening of the Miracle League handicapped accessible ballpark in Arlington. We went to the opening ceremony a few weeks ago and if you need to have a good cry, just go to one of those games. The kids can start playing baseball when they turn 5. They get a “helper” which is normally an able-bodied child. They can have just about any disability to qualify for the Miracle League. Some kids were in wheelchairs, others were not. They can either hit the ball off the teeball stand, have a coach pitch to them or in one case, just throw the ball. As they round the base, everyone is cheering for them like it is a major league playoff game and the kids are just beaming with pride. Savanna told us she wants to play when she turns 5. The seasons only last 6 weeks and the park is in Randol Mill Park in Arlington. What a wonderful thing for our kids to be able to participate in. I’ll let you know more as the time gets closer.
For those of you who have been praying for a full-time day route for Tim, keep on. We thought they were going to make his current route into a full-time route that he could bid on, but the plan has changed. He will continue with his normal route for now, probably until Oct or Nov. That at least gives him a little more time to earn more seniority and for some of the people ahead of him to bid on other full-time positions. We know that God has it under control and trust He will bring one at the right time. I have successfully completed Chemistry and have decided to just party all summer (kidding). I was going to take some summer courses, but Chemistry fried my brain so much that I need a little break, so I will wait until the fall to take more classes. Ugh! We had Savanna’s ARD meeting for school yesterday and I had been thinking all year that I would be able to get her into kindergarten in the fall, even though she misses the Sept 1 deadline for turning 5. Well, it’s now a law and I have to go to the school board; it doesn’t look very promising. Otherwise she is doing wonderful in school and will go to summer school the month of June; if they have special needs they normally qualify for summer school so they don’t lose the physical, occupational and speech therapies that they get at school.
I believe that covers all the news with Savanna and her family. We appreciate all of your prayers and look forward to her continued improvement and healing. I hope that she blesses your life in some way as she blesses ours every day.
Love,
Mindy