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
Kleenex Alert
February 8, 2006 by · 2 Comments
WARNING: Kleenex alert. Ladies, this might cause your makeup to run. It’s also a lengthy newsletter.
I thought I should put the disclaimer at the beginning of this Savanna update because some of the “Savanna stories” I am about to share I can hardly tell without tearing up. I get better the more I tell them. I am just constantly amazed at the pure faith and joy that she possesses.
First, Savanna is doing wonderful. She has missed hardly any school since she recovered from her scoliosis surgery and we expect to have the next surgery sometime this summer. She continues to grow both spiritually and physically. I feel like sometimes I have a little Mattie Stepanek on my hands, although she is much more shy. I hope that she will “grow out of” her shyness, at least to some extent. We have finally found her a black puppy, something she has been asking for for several months. In fact she was telling me one day and I mentioned I had found a yellow puppy on the pound. “Bring the yellow puppy home” she said. Well, the yellow one was adopted before we were able to get back over there. I just kept praying and knew that God would bring along the perfect black puppy for Savanna. On Friday we brought home a black Lab mix from the pound. She is about 8 weeks old and Savanna named her Bo (Bo Bice), even though she is a girl. I’ll send pics of the dog as soon as I find where my husband put the digital camera. It’s been quite some time since I had a young puppy and how easily we forget the challenges of housebreaking. Ugh! But, she is just such a sweet little thing. Just precious with her floppy ears and big old feet that she hasn’t learned to navigate.
Savanna has quite a bit to say about Jesus and her angels lately; hence, the kleenex alert. I was invited to speak at the Saginaw Lions Club about a month ago. I told Savanna that they wanted to know all about SMA and Savanna and asked her what would she like for them to know about Savanna? Her answer was so simple: that Savanna is happy. I just got tears in my eyes and thanked the Lord for my happy child. She still insists that she is not silly; she is happy. I thought about that later. Of all the things she wanted people to know about her, she wants them to know that she is happy; not that she can’t walk or eat by mouth or play like other kids. Just that she’s happy. What a blessing!
A few days later as I was getting her ready for school she started talking about Jesus and her angels. She told me she had Jesus in her heart (no surprise there). I told her how wonderful that was and that she needed to share that with others and tell people about her angels (she still has 4 by the way). She looked at me and said, “You’re an angel, Mama.” The fact that any child would refer to their parent as an angel astounds me, but the fact that a 4 year-old thinks that really astounds me. Now both of these events happened in the same week. I just go to bed at night thanking God that for some reason He decided to bless us with this wonderful child. Now don’t get me wrong; she still has her 4 year-old moments. I told her last week I was going to sell her for a dollar. I asked her, “Who do you think will buy you?” She said, Mama. I said, “I’m trying to sell you; why would I buy you?” She then answered that Mr. Trent (her physical therapist who she thinks is hot stuff) would buy her. Onto that subject, I have never seen a 4 year-old as boy crazy as this child!!! I shouldn’t say BOY crazy; it’s more like MAN crazy. She seems to prefer the 20-somethings and really likes it if they have long hair.
She was thrilled, to say the least, that American Idol is back on. She will quickly tell you if she thinks someone is a bad singer and wants you to fast forward thru it. The first night it came on and I came home from Bible Study at 9:30, she was wired. I kept telling her she needed to go to sleep or she would be exhausted the next morning. Well she continued to just sing in her bed until about 10:30 that night. The next morning she could hardly keep her eyes open as I was getting her ready for school. I told her, “See, that’s why I told you to go to sleep.” She looked up at me and very matter of factly replied, “Well, I was happy.” Okay, so how do you respond to that? 
LOL
Last week was an eventful Savannaisms week as well. On Thursday while she was getting ready for school she said, “I know Jesus.” I told her I knew she did and that she needs to tell others about him. Then she said, “Savanna is going to Heaven.” “I know baby,” I said, with tears streaming down my face. “But Mama wants to go with you okay?” She just smiled and said Okay. On Sunday as we were getting ready for church, I explained that after we went to our church we were going to Mamaw and Papaw’s church for some baptisms. She said, “I want to go to Aunt Kelly’s church.” I assured her that Aunt Kelly, along with everyone else, would be at Mamaw’s church. I thought back to Christmas Eve when we went to our Christmas Eve candlelight service at our church. The plan was to go to ours first, and then to Northwood where Kelly (and Mike) and the kids go. I have to admit I was wanting to just go home after our service because the thought of loading Savanna up and unloading her again was already exhausting me; but she insisted that we go to Aunt Kelly’s church that night. I didn’t think too much of it until this past Sunday when she insisted again on going to Aunt Kelly’s church. Aha, she must have someone there that she wants to see. Being the boy-crazy child that she is, I’m thinking she must have some little boyfriend that I don’t know about. I have to admit it’s a stretch since we only go to Aunt Kelly’s church for special services. Savanna doesn’t know any children there.
I asked her, “Is there someone you want to see at Aunt Kelly’s church?” She said yes. I asked her who it was and she said, “Angel”. I asked her if there was an angel at Aunt Kelly’s church and she said yes. Well I thought, surely we have one at our church as well. Nope. I took that matter right to the Associate Pastor and asked him to put that on the staff meeting agenda! We do have angels by proxy at Center Point since Savanna’s 4 angels travel with her and go to our church with her, but it seems that Northwood has it’s own resident angel. So I asked her some more questions:
“Where is the angel?”
“Up.”
“Up by the ceiling?”
“Uh-huh.”
“Is it a boy angel or girl angel?”
“Girl angel.”
“Do you see Uncle Mike when we go to Aunt Kelly’s church?”
“Uh-huh.”
“Is Uncle Mike an angel?” Now I have to clarify myself to all of you. I KNOW that my brother is not an angel. That’s certainly a word I never used to describe him while he was alive and I realize that angels are Heavenly beings that are not people. I was just trying to make Savanna explain to me. So, her answer to that question was no.
“Where do you see Uncle Mike?”
“Up.”
“Up by the ceiling, like the angel?”
“Uh-huh.”
“Does Uncle Mike see you?”
“Uh-huh.”
“What is Uncle Mike doing when you see him?”
“Singing.”
Now there’s where the tears come gushing out. For so many reasons. First, just that we all miss Mike so much. I talk to Savanna about him all the time because I don’t want her to forget him. He died right before she turned 3. Secondly, it just warms my heart that she has this gift to see angels and to see her Uncle Mike in a place that he loved to be in. And lastly that she sees him singing, praising God. Now this one is hard for me to wrap my brain around. I know that the Bible talks about what Heaven is like. There are no tears in Heaven; our days will be filled with SINGING and laughter; praising God. I know that Savanna does not know that yet, at least not from the Bible. At this age, most of her Bible stories are about David & Goliath and so on. Not about what it is like in Heaven. So I ask myself, does she have a window into Heaven? Does she take trips there? Or is it that she just sees Uncle Mike here? Questions that I guess will be answered when I can join him there in Heaven.
I find myself asking her about her angels all the time now. It is so comforting to me as her mother to know that she sees them and that they bring her comfort. My prayer now is that God would allow me to see her angels. Every time I think she has really outdone herself, she surprises me again. I just can’t imagine what kind of stories she will share with us 5 years from now; 10 years from now. She will definitely have lots of stories to tell.
As for the other Rushes, life is busy as usual. I decided (or God decided) that I should go back to school. I felt the calling back in fall to go back to school and get my nursing degree. I say it is a calling because I never in my life wanted to be a nurse. I always loved sciences, but I never saw myself as a nurse. But I feel called to do it now. I think it would help me better understand SMA and the science of it and how it affects her body, but just as important, I want to be able to minister to families that go thru some of the things we have been thru with Savanna. Let’s face it, we’ve BEEN there. We know the emotional roller coaster. I figure it will take me somewhere between 3 and 6 years to finish, but those years will go by anyway. I might as well do something productive with those years. I plan on keeping my Curves business for about 5-6 more years. I would like to just work about 2 days a week when I do graduate. The nice thing about nursing is that you have the ability to just work part-time or prn if you want to. I thought I would be way ahead of the game since I already took Anatomy & Physiology and Microbiology years ago, but you have to have taken them in the last 5 years for the nursing program. I’m taking Chemistry this semester and plan on taking another Psych class this summer and maybe one of the Fine Arts credits that I will need. I figure it will be at least a year until I can begin the nursing program and could be longer. Since I haven’t been in college for about 8 years, I thought I would just take one hard class and try to master these sciences one at a time.
The other Rush has bought a snowcone business. As if we didn’t have enough going on. Now I say HE because I have told him that I don’t have time to help run that business. I’m a little busy with my own business, working, going to school 6 hours a week, studying and taking care of Savanna. Oh, and the fundraiser and the new puppy. He came home on a Tuesday just talking about someone at FedEx opening their 2nd snowcone stand and by Friday we had purchased a snowcone business right here in Saginaw. It literally fell into our laps. You know us; we just fly by the seat of our pants. Hold on tight; things are about to get crazy!!!! Please pray that I don’t kill him in the process. For those of you that know him, he tends to get a little “wound up” about something when he is excited and I find myself trying to bring him back down to planet Earth where the rest of us reside.
One last thing, we now have an official Texas chapter of Families of SMA. We held our 1st meeting a few weeks ago and it was wonderful. We had 25 people come, representing 8 SMA children. We really enjoyed getting to meet the other families and just talk about what we can do as a Texas chapter. There are over 200 SMA families in Texas that are registered with FSMA. One of our top priorities is trying to get some information to the neurologist offices so that when a family receives the devastating news, they can get some kind of written information to take home with some local family contact. I know that for us, that was a Godsend. I know how comforting it was for me to be able to talk to other SMA parents who understood how difficult this was. FSMA is also going before Congress to try and get SMA as one of the newborn screening tests. Research has shown that if a child is started on a drug therapy trial before they show symptoms, it seems to slow the progression of the disease.
I think that covers everything from the last month. And I always think I don’t have that much to tell. Oh, Savanna got her communication device. Right now it is just programmed to work her DVD player, but she loves it. It has a little computer with a clicker that allows her to operate her DVD player. The first time she has ever had any independence in controlling her TV. Woohoo! Please continue to pray for continued healing for Savanna and for Tim’s newest business venture. He’s already talking about opening a 2nd one if this one is successful. Let me just say this will NOT take the place of his FedEx job. This is just a side gig! Also please pray for me for time management with all that is going on right now and for my brain to absorb all this Chemistry information so that I can do really well in this class!
Love,
Mindy
Texas FSMA
January 22, 2006 by · 2 Comments
Just wanted to let you all know that we had our 1st meeting yesterday for the Texas FSMA chapter at our house. It was great. We had 25 people show up, representing 9 SMA families. We had a SMA mom from Houston that drove up for the meeting. The ironic thing is that all the families represented yesterday were girls and Savanna was one of the oldest.
A few updates that I thought you all would like to know. FSMA is going before Congress again to try and make SMA one of the newborn screening tests. What they have found is that if you can get a baby on the drug trial BEFORE they being to show symptoms of SMA, it may have a profound effect. One of the families that came yesterday lives in Comanche, Tx. They lost a 10 month old boy to SMA. They then decided to do PGD, which is basically a type of in-vitro procedure that assures you that the baby will not have SMA. Well, they have 5 month old twin girls and one of the girls has SMA. The twins are obviously fraternal; if they were identical they would both have SMA. Not only does she have SMA, she has Type 1. Since she tested positive for SMA at birth, they immediately enrolled her in the drug trial in Utah and to date she has not shown any noticeable symptoms of SMA. That is amazing. A normal Type 1 baby would not be able to do the things that she has done.
One of our goals as a Texas chapter is to get info to the neurologists in state so that when a child is newly diagnosed, they will be given info on the Families of SMA with local contact information. It is so important to be able to talk to other parents. I know that was critical for me and Tim. There are 203 SMA families in Texas that are registered with FSMA. That’s a LOT of families, and those are just the ones we know about. It’s kind of sad that only 9 families have responded to coming to the meeting, but I know there were several that just could not make the meeting.
It was refreshing to see all the faces yesterday. Some familiar, Lanie Hannah, Grace Coggin, Hannah Ostermyer. But some new ones. Two families that recently moved here from Michigan. And of the 7 children that were here yesterday, Lanie & Hannah were the only ones without a feeding tube. It was so nice to feel “normal”. I’m attaching a few pics. The children were all wonderful. Very happy, sweet, content children. I told Tim I would take a houseful of SMA children coming over to visit versus a houseful of “healthy” children any day. Savanna was thrilled to see Lanie; I think they will become best friends someday as Lanie just loves Savanna. She told her Mom that she can spend the night sometime and sleep in the spare bedroom. They had a great time playing together.
I will try and schedule a meeting for us in Feb. Just need a little breather first. Also, some of you might not know that I started back to school last week. I have felt the last several months that God was “calling me” to go back to school to get my nursing degree. It is a God thing because I never had a desire to be a nurse before. Most of you don’t know, but Tim and I both have a dream of having a special needs camp someday. We want to have a place that special needs children can come to once a month for a weekend and just get to be around other handicapped children. MDA camp is only 1 time a year and the kids look forward to it all year long. Not only that, for some parents, that is only 1 time a year they get a break. Well, I felt that getting my nursing degree would also help us later down the road with our “special needs camp dream”. So, I am taking Chemistry this semester since I cannot apply for the nursing program until I have completed that and Anatomy & Physiology. The thing that stinks is I already took Anatomy & Physiology and Microbiology (another prerequisite) years ago but I have to retake them because the nursing program requires you to have your sciences in the last 5 years.
So, life will be very busy from now until May. But I figure, it’s only 16 weeks. It’s not that long. I have been praying about this for months and felt this is where God is leading me. I plan on keeping my Curves business for at least 5-6 more years and will probably sell after that time. I know that sometime in the future I will write a book, but as someone said last week, my story is not finished yet. We need to start getting the word out about our date for the fundraiser, Aug 12. I think I will try and have some little business cards printed with a “save the date” thing on there so each of you can pass them out as you are out and about.
I’ll be in touch soon regarding scheduling a meeting. If you know anyone that would like to join the committee or can help in some way, please feel free to bring them on. Eric Ostermyer (SMA dad) said he has a few contacts for getting a caterer, so I am hoping something will pull thru. We need to pray in a caterer that will donate all the food.
As always, thanks for all your help.
Mindy
Merry “Late” Christmas
December 27, 2005 by · 2 Comments
I hope everyone had a wonderful Christmas. I apologize that we never got any Christmas cards out in the mail this year. I had intentions of doing it, but had a few personal setbacks this month that did not allow me to do much. I have found that Christmas gets to be a hard time for me every since Savanna was diagnosed. I feel like I do pretty well all year long, but there’s something about Christmas that I mourn all of the things my little girl doesn’t get to do or that I don’t get to do with her as her Mommy. I also miss my brother so much that it hurts. I want to pick up the phone and call him when I’ve had a bad day, because he would always put things in perspective. At least I can still hear his voice; thankfully Kelly has never changed their message on Call Notes so when I call the house and no one answers, I get to hear his voice again and that somehow makes things feel a little bit better. I find myself trying to imagine what Christmas must be like in Heaven and how wonderful it will be when we are all there together. My little girl won’t be confined to this earthly body any longer and will be able to walk, run and dance. But I also know that I have so much to be thankful for that more than makes up for the hard times.
Many nights when I am putting Savanna to bed, I always tell her about how God knew when he was forming her in my tummy what a special little girl she was going to be and how I must be the luckiest Mommy in the world because He picked me. She always gets a smile and just agrees with me. I can rest assured that she definitely has a positive self-image! I find myself always reminding her to say thank you instead of uh-huh when someone tells her how pretty she is. I can say she gets that from her Daddy! He is certainly one to toot his own horn! We really enjoyed her this Christmas because she was so excited this year, except about Santa. He was not to come anywhere near this house, I don’t think she would even allow him in Saginaw. I had to convince her that Mommy would meet up with Santa on Christmas Eve to pick up her presents. She would ask every day to open a present. Of course I wouldn’t let her. She’s already spoiled enough.
This is the time of year that I normally dread: respiratory season. I am constantly praying over her for supernatural immunity so that she won’t get sick. A few weeks ago we were in her room laying on her bed and she was just looking all over the ceiling and smiling. I assumed she was seeing her angel again, so I asked her. Yes, she was watching her angel. I then asked her how many she had that day and she said 1, 2, 3, 4! Wow, 4 angels. Now that is an answer to prayer I would say. I told her how Mommy always prays for those angels to watch over her and then I just stopped and said aloud, thank you angels for watching over my little girl. She loves to give hugs and we’re talking your face has to be squished right up against hers for it to be a real hug. She won’t let you get away with anything less. She cracks me up always wanting a hug. If I don’t do it just right, she’ll say, “That’s not a hug!” I’ll ask her how do you give a hug and she just kind of squeezes her arms, shuts her eyes and says, “mmm, mmm, mmm”. She is so funny. She insists on like a hundred hugs a day. I’ll finally have to tell her, Okay, only one more hug. One day when we were playing and laughing, I told her she was silly. She said, “I’m not silly.” I said, oh, then what are you? She said, “I’m happy.” I then asked her, what makes you happy? Her answer, Jesus. That little girl certainly brings me to tears at least once a week with her sweet and joyful spirit. I feel ridiculous being sad or frustrated with my “things” when she is so happy in spite of all her daily challenges. She also loves to sing and talk to herself, especially when it’s nap time. I was in the office one day listening as she was in there for naptime just talking away. It honestly sounded like she was having a conversation with someone else, yet I knew there was no one in the room. I instantly thought, “Oh she must be talking to her angels. Isn’t that sweet?” Well, I asked her later, “Honey, were you talking to someone in here.” She just sheepishly smiled and said, “Yes.” I said, “who were you talking to?” She answers, “Bo” (that would be Bo Bice for all you non American Idol fans out there). She still thinks he hung the moon, at least until the next American Idol comes out. She wants to wear her Bo t-shirt every day.
So, onto medical updates. We have seen both her orthopedist and her pulmonologist since I last updated you all. The orthopedic surgeon was thrilled with how well she has done. Her spine x-ray showed that the bone grafts that were done around the pelvic area have taken and none of her hardware has come loose. He said she looked great and that we had done a great job with her, although I would say WE haven’t done a great job with her; God has done a great job with her. It is again because of all those prayers for her. We will probably do her next surgery in May or early June. Again, that should not be a major surgery like last time. She will probably only be in the hospital 2-3 days and that will help straighten more of the curve at the top of her spine.
As for her pulmonologist, she was also thrilled with how well Savanna looked. We see her every 2 months and take a chest x-ray at each visit. We have been doing that since she was about a year-old. She said that miraculously her right lung was almost completely re-expanded! Praise God! She said that Savanna looked so well that at our next appointment we won’t even have to do a chest x-ray; she will just check her blood gas. Wow! We haven’t been able to go without chest x-rays for over 3 years!
As for me and Tim, not much new with us. He is completely healed from his hernia surgery and thankfully worked a lot of hours during the Christmas season. I am looking forward to a busy January at the club and trying to resolve to be better organized in 2006. We have reserved Aug 26th for Savanna’s fundraiser, so there’s one thing I can check off my list. We are loving the new wheelchair van and Savanna loves having a TV in the van. We’re hoping to try and take some small family vacation, maybe in the spring. Her royal highness got about a million Christmas presents. I am so thankful that she is loved by so many, but at the same time I want her to appreciate what she has and what she is given, because there are so many children less fortunate out there. It breaks my heart to see a child out with a parent that is obviously neglected in some form by their parent. You can just see it in their eyes and I just can’t imagine not loving your child and taking care of him/her. I am so blessed for the time I am able to spend with Savanna and I know when I’ve had a bad day, I normally just need a “Savanna fix”.
In closing I would just like to ask for your continued prayers for Savanna to stay healthy and to get stronger. I am specifically praying that God would restore her swallowing function, as she has had an interest in eating lately. We were talking about babies a few weeks ago and how they have to be fed and Savanna broke my heart when she said, “I can’t eat.” I told her that Mommy prays for that and that she needs to start praying for God to fix that too and that there is nothing that He cannot fix. Please remember to pray for all of our little SMA friends during this respiratory season as two of them have already had pneumonia. I am looking forward to 2006 and hope that you all have a safe and happy New Year’s Eve. Thank you again for all your prayers for our little angel. I am attaching her latest picture, which I intended to send out with the Christmas cards that never got sent. Now you can see why my resolution is to be more organized in 2006!
Love,
Mindy
Savanna Update
October 9, 2005 by · 1 Comment
Hello everyone. Finally I am getting around to a long overdue Savanna update. I just can’t believe we have 24 hours in a day because there never seems to be enough of them for me. We are now three weeks post surgery and Savanna is doing wonderful and has been for the last 2 weeks. She had been bugging me to go to school barely a week after surgery, so I finally relented and let her go back after 2 weeks. She is now back to her regular school schedule. I think her doctor is as amazed as the rest of us how wonderful she has done. She went to see both her orthopedic doctor and her lung doctor this past week and received great reports from both of them. I am so pleased with the doctors the Lord has put in our life. I always say Savanna is the only child I know that gets excited about going to the doctor. I can’t even tell her till the day we are going because otherwise that’s all she’ll talk about for days. If I even mention one of her doctors names in front of her, she insists that we are going to see them!
I also wanted to let you all know that Tim had his hernia surgery a week ago Friday and he is doing great as well. I meant to send out an email to let everyone know it was scheduled, but I’ve been too busy to get around to it. Poor Tim; he was expecting to have a Savanna size crowd awaiting him in the recovery room and all he got was me. Of course he likes to be extremely dramatic about that kind of stuff and try to milk it for as much attention as possible. I was so exhausted after taking care of him and Savanna last weekend that I decided I was changing my name to something other than “Honey” or “Mama”. The funny thing about Savanna is that she will call my name relentlessly until I come in there; whereas most able bodied children will come and get you, she just lays there calling my name until I come see what she needs. It’s usually something really important, such as her video is over or she dropped something on the floor! Come to think of it, her Daddy is the same way. He even called me on the home phone from his cell phone (from his recliner in the game room) because I would not come and see what he needed. Now you might understand why I call Savanna “Little Tim” when she starts acting all dramatic about something.
We are so thrilled with the progress that Savanna is making. It is refreshing to see her sitting in her chair and not be collapsing. She looks like such a big girl now! I am so blessed to have all of you praying for us and am so thankful that God honors those prayers. When I think back of when she was in the hospital after her surgery, I remember thinking how much it was going to break my heart when she would ask me to hold her. I knew the time would come, as she always wants me to hold her and I knew that being just a few days post surgery and all of the IV’s and wires they would have attached that I would not be able to hold her. Well, the time came the day after surgery. She looked up at me with her swollen face and Angelina lips and said, “Mama hold you.” I got tears in my eyes as I told her that I couldn’t hold her yet and tried to explain why. I stopped right then and prayed that the Lord would hold her for me, wrap His arms around her and comfort her only the way a mother could do. She seemed to understand at that moment and was at peace with it. Luckily they let me climb in the bed with her the next day and hold her.
Savanna has been moved up to the pre-K class at school and what a difference! She loves it and the kids are so sweet to her. We are getting ready to get her some type of communication device that will attach to her wheelchair and will allow her to do all kinds of amazing things. Turn on lights, use a phone, communicate with others when they can’t understand her, etc. It’s a little hard for me to imagine since I have never seen one, but we should be getting it this week so I’ll let you all know how we do with it.
As for surgery, she will probably have another surgery in about 6 months to lenthen the growing rods. She will still have to be hospitalized, but it shouldn’t be too difficult of a surgery. The rods are already in place; this will just involve making a small incision and lenthening the rod at the top of her spine. I would imagine she will only be in the hospital a few days for that one. Her doctor said she went from about a 90+ degree curvature to about a 65 degree curvature with this one surgery. She has simply been amazing with her recovery. I have no other explanation than it was a God thing. She only took her pain medicine for about 1 week, and that was mainly at night to help her rest. She went thru several days where she had severe contractures in her legs and that was worse than the surgery. I guess with the pulling on the spine it caused her other muscles to contract. We had a few sleepless nights with her legs hurting her really bad, but she seems to be past that now. She has rarely complained about her back hurting at all. Every once in a while someone will ask her if her back hurts and she’ll say yes. When you ask her if she wants some medicine for it, no. That’s funny to me since she doesn’t have to taste the medicine as it goes directly in her g-button.
As for my other child, Tim will be on light duty at work for the next 5 weeks. He is not allowed to lift anything heavier than 10 pounds, so he can’t even pick up Savanna. Please continue to keep us in your prayers as the next 5 weeks could be a little challenging. Not only that, but I am short-staffed at work so I am working a lot more than I usually do. I would also like to ask you to remember my sister-in-law Kelly in your prayers. She has been so strong and filled with such grace since losing my brother but this Tuesday would have been her and Mike’s 20 year anniversary. It just reminds me that we just never know how long any of us has and to live each day counting our blessings. I am so thankful to be surrounded by such a loving and supportive family, church family and wonderful friends. As I have told you all before, Savanna says her prayers every night and I can’t quite understand what she says. I can understand, “Dear God, thank you”…….. and then “in Jesus name, Amen!” Well last week, I asked her what does she thank God for when she prays? Her answer: Jesus, Mommy and Daddy; in that order. If we could all have the childlike faith of Savanna!
In closing, I am attaching a few pictures for you. First is a picture from her Princess Birthday Party and then a picture of her since her surgery, sitting in her chair. Now she still does not have head control, but we are working on getting her better support for her head and neck in the wheelchair.
Thank you all for your amazing love and support and I hope you have a blessed week.
Mindy
Savanna Is Home!
September 19, 2005 by · Leave a Comment
Well you won’t believe this one. Savanna has done so wonderful that she is already home! She got to come home today, a few days early. Each day we saw more signs of healing and as of yesterday, she had no pain medication (including even Tylenol) until 10:30 last night and I think that was more to help her rest. She informed me that she was ready to come home yesterday, only 3 days after a major surgery. Now I remember from my days of working in surgery that the 3rd day is the peak day for pain and swelling. You would have never known that with Savanna! She told me, “Savanna go home.” I told her she needed to tell her doctor that this morning.
I know you will all join me in giving thanks to our Father for how wonderful she has done. She has continued to amaze us all with her strength and her unbelievable recovery. I thought that sitting in her wheelchair for the first time and riding in it in the van would have been painful, but she did not complain one time. This surgery involved making an incision all the way down her spine, from the top of her back to her tailbone. They then had to pull everything away from the bone, including the muscle, insert 2 titanium rods down either side, place 3 screws in her pelvic bones and attach the rods with some type of wire all along her spine, and yet she is not complaining whatsover. She is just in her room watching TV, singing and as happy as can be. What a miracle child she is!!! I think the scoliosis had gotten so uncomfortable itself, that she is in relief now. All I know is it is an answer to prayer. She was such a blessing to the staff at the hospital as well.
So, I hope none of you have gone to the hospital only to find an empty bed. She is resting right now, but I know she will love to have visitors. If you want to come and visit, please just call first so I can let you know if she is napping. We did come home with some pain medication, but I doubt she will even need it. She hasn’t had anything since 10:00 this morning and that was only because Dr. Gray felt we should medicate her before the ride home. We have continually asked if she is okay, is she hurting, does she need pain medicine. Her answers are always, fine and no I don’t need anything. Such a little trooper.
As always, we REALLY appreciate all of your prayers for our precious Savanna and our family. We will continue to pray for a full and speedy recovery.
Love,
Mindy
24 Hours Post Surgery
September 16, 2005 by · Leave a Comment
Hello everyone. I hope this email finds you all doing well. We are almost 24 hours post surgery and Savanna is doing very well. Her face is still swollen; I would say she no longer has the Goldie Hawn lips, but definitely Angelina Jolie lips. That could be a good thing! She seems to manage the pain pretty well, with the help of Fentanyl. I’m glad they were able to give something other than morpheine since I had heard that could make her sick to her stomach. Her x-ray this morning showed her lungs looked good. There is a concern when you have surgery like this and are lying on your back that pneumonia could settle in. In addition to praying that away, we are trying to stay on top of the breathing treatments, cough assist and suctioning. They did elevate her bed just a little today to try and help that as well.
Today is also her birthday. I never imagined she would be spending her 4th birthday in the hospital, but God showed me a long time ago that sometimes the holidays are more about what you are celebrating and less about the actual day that you celebrate it. I’m thrilled to see her doing so well and even more thrilled to look at her trunk and see a significant improvement and to know that she will no longer collapse while sitting in her chair. The doctor was commenting on how small and thin her pelvic bones are today and I was telling him that she had really gotten uncomfortable sitting in her chair the last few months. He said he was not surprised. Evidently all the weight of the body and her trunk collapsing supported by such small weak bones in the pelvic/hip area would be quite painful.
She has been in and out of sleep, but Nosy Nelly won’t really sleep with all the action going on around her. She’s afraid she might miss something! I swear she sleeps with 1 eye open; that way she can make sure I don’t leave her bedside for even a bathroom break. Yesterday the doctor wanted to show me the x-ray and she did not want me leaving. I told her to count how long I was gone and luckily her Daddy got there as she had just counted to 30, so I got a reprieve. Her anesthesiologist came by today to see how she was doing. I don’t think that’s typical for them to come by the next day, but who knows? They all gave her a birthday balloon and signed it. He signed it, “To the sweetest girl in the world.” Now who could argue with that!
As always, she amazes and inspires me with her strength, will and most of all peace. She can’t speak too clearly right now, I guess because of the sedation and the swelling. She kept asking me for something this morning and I couldn’t quite figure it out. She finally got thru to me. “Mama pray.” I asked her, “You want Mama to pray for you right now.” She said “Uh-huh.” I asked if she wanted to pray with me, “No.” So I put my face right next to hers and prayed for her. As I prayed her whimpering stopped and I could immediately sense the peace coming over her again. Such a simple, yet sweet request. I obviously needed a kleenex after that.
Yesterday while she was in pre-op, it was as if nothing was going on. She was her usual happy, chipper self, even at 5:30 in the morning. She was just talking and acting silly. As we laid there on the bed, I asked her if her angel was with her. She said yes. I asked her how many she had today and she counted, One, Two. I asked her what color they were wearing and she said white. She always looks up at them so that I can have an idea as to where they are. Then they came and wheeled her off to surgery and she was just talking the whole time. Every time I asked her if she was scared she would tell me no. If we could all have the same faith that she has.
As most of you know, this has been a tough week for us. On Monday we had to put our beloved Sadie to sleep. She was our “baby” before we had Savanna since we got her as a puppy 2 weeks after we were married. On Tuesday Tim found out that he has a hernia and will need surgery in the next month. That will be a very minor procedure; it’s just that he will be on light duty at work for 2-4 weeks, so we are praying that God will provide for us during that time. Luckily he caught it early so it is very small and not painful at all.
Savanna should remain in ICU for about a week and then she will go home from ICU. They will have her sitting up in her chair in a few days. She is still losing a small bit of blood from the surgery, but they do not feel they will have to do another transfusion at this point and they will continue to monitor it. I had been praying specifically all week that Dr. Davis woud be the staff ICU doc on Thursday and that Elaine would be the nurse practitioner on shift for Thursday. I was thrilled when we got to ICU yesterday and God had answered those prayers as well. We are so blessed to be surrounded by such wonderful staff at Cook Children’s.
As far as we know, there is not much we need right now. I know a lot of you have asked what you can do. I guess a few meals would help. I’m trying to find little ways to let people help, because as I am reading in the book, “90 Minutes in Heaven”, we steal people’s joy when we do not allow them to help us. I would imagine that Savanna can have visitors at this point, though she is in and out of sleep. It might be better to give her another day before she has too many visitors. The ICU is closed from 6:30-8 am and pm for shift changes.
Thank you all for your continued prayers for healing and comfort for her. I know she will continue to do great and look forward to when she is completely recovered, which is probably about 4 weeks away.
You can also leave a message in the PICU waiting area, but I do not know what that number is.
I’ll try to send another update in a few days.
Love and Blessings to all of you!
Mindy
Fundraiser Success
September 2, 2005 by · Leave a Comment
I want to thank all of you that came out to Savanna’s fundraiser. We had a big crowd; we estimate about 600 people and I think everyone had a great time. We actually had 7 SMA kids there this year. That was wonderful. I know that you all see Savanna, but I think it’s great when you can see other kids that have SMA and see how happy they all are as well. It also makes you realize how severe the different types can be as you look at Lanie, who is a strong Type 2 and Savanna who is a strong Type 1. There is a world of difference between them in their strength. I’ve had to learn to not compare Savanna with the other children and realize that God just gave her strengths in other areas.
As for the big total. I still don’t have concrete numbers because I am waiting on invoices to come in. Some of the things we are billed for after the event, so I am just estimating. I figure we made about $43,000 before expenses. We had about $4500 available for Savanna for her direct expenses and about $35,500 or $36,000 to go to FSMA.
Our expenses were quite a bit higher this year because of the new place, but we feel it was well worth it. Each year we learn some things that we could do differently.
We appreciate so much all of the donations that you all made to FSMA or to Savanna directly. After we pay some medical expenses of hers, we are planning on paying about $2000 down on the wheelchair van so that the payments will be more in our budget.
As for you blood donors, now is the time to make your way over to Carter Blood Centers. Most of you will be donating as replacement credits for Savanna. When you go in to donate, just tell them that you are donating as a replacement credit. Her surgery is scheduled for Sept 15th at Cook Children’s. They want the blood between 5 and 14 days of surgery. I was told they only wanted 3 to 4 people as directed donors and I have sent emails to those people. We are still not sure which surgery she will have. I have left a message for the doctor and I understand that he was meeting with the sales rep yesterday regarding the type of rod to use with Savanna. Please continue to pray that he will have the correct instrumentation and wisdom and knowledge to do the growing rods. I should know which way we are heading next week.
I hope to go ahead and schedule next year’s fundraiser in the next few weeks. We plan on pushing the date back to mid-August. If any of you would like to help, we certainly need more committee members. We are a pretty small committee and all have like 100 jobs each! As I have told many of you before, I had never organized a fundraiser before in my life until we started Savanna’s fundraiser. It was just a step of faith and I must say the Lord never lets me down. Anytime I am willing to step out in faith with something, whether big or small, he always blesses it. I will tell you that we spend a lot of hours and hard work doing what we do, but the reward is so worth it. We are all on such a high the night of the event and then we all crash for like a week afterward. If you are interested in helping with next year’s event, please contact me. We would love to have you.
Thank you again for all your prayers, work and donations on behalf of our Sunshine. I will email everyone after her surgery to let you all know how she is doing. Please continue to lift her up in your prayers for the surgery to be a complete success with no complications or infections and a quick and full recovery.
By the way, Savanna loves watching her video of herself. She wants to watch it over and over again. I understand that is typical for children her age. I’m so glad when she does things that are typical for her age!
Love,
Mindy
We Got a Van!
August 10, 2005 by · Leave a Comment
We got a van!
Whew! What a sigh of relief. We finally found a van. We just picked it up on Monday and it will go the shop next week to have a wheelchair lift installed. I can hardly wait! Savanna LOVES her new van, except when I told her that until we get the wheelchair lift, I can’t take her power chair with us because I won’t be able to get it in the van. I got a dirty look for that one. But she loves it nonetheless! She keeps saying, Savanna ride in new van. We had to go with a full size, hightop conversion van because the minivans did not allow much room for growth. We found a 2002 model with low mileage and it is loaded with everything. The only thing we need is a DVD player for it. It has a VCR, but we don’t even have VHS tapes anymore.
I’ll send pics after we get the lift installed. I’m sure they will include Savanna with her big smile as she gets to be a “big girl” in her new van.
On another note, Savanna’s new loves are Justin and Bo from American Idol. I had rented the 1st season DVD for her because she did not understand that American Idol is not on right now. Move over Bo! Now she loves Justin! That girl is so boy crazy. Anyway, I didn’t bother to get tickets for American Idols Live when they went on sale. Now that’s all she can talk about. Does anyone know someone who has tickets and would like to sell or donate them to Savanna? The show is sold out. I found a few internet ticket places but they want $65 and higher for tickets and for 3 of us that is just too much money for one silly concert. As I was reading her bedtime story the other night, (Dora’s Bedtime Wish), we talked about if we had one wish, any wish in the whole wide world to be done, what would it be? I explained to her that Mommy’s wish would be for her to be completely and totally healed so she could get out of that wheelchair and run and play like all the other kids. I thought surely her wish would be something along those lines.
Her wish?
“To watch American Idol” in her exact words. I didn’t know whether to laugh or cry! I just felt so blessed in that moment that with everything she battles daily and what I want for her so much, all she wants is to watch American Idol in concert. What is the saying, “Kids say the darnest things?” Please email me if you have any helpful information for American Idols tickets. They are playing at the Nokia stage in Grand Prairie. They say they are sold out, but I doubt they are sold out of handicapped seats but we wouldn’t know without just driving over there on Sat night for the show.
The fundraiser is fast approaching! Only 2 1/2 weeks away. If you are interested in coming or sponsoring a table, please let me know. If you are interested in a sponsorship that involves getting your company name on the back of our shirts, let me know by this weekend because we have to get the t-shirts ordered on Monday morning.
I forgot to mention that we got a huge blessing for the van. Savanna has been on the waiting list for In Home and Family Support for 3 years now. We were told at the time it was only about a 9 month waiting list, but the state made more cuts, yada, yada, yada. Anyway, I called a few weeks ago to check on her status and she had just become eligible for support and they will help pay for the wheelchair lift! Praise God! The big thing is that their year ends Aug 31 so we can use this year’s money for the lift and then Sept 1 starts a new year and that money will pay for the remaning balance of the lift and part of the tie-down system. Yippee! We will only be out about $1100 but are sure we can raise that thru the fundraiser. The other thing is, once she turns 4 (September 16th), she is no longer eligible. Talk about a God-thing for timing!
I just wanted to thank you all for your prayers for us finding a van. I am counting down the days until the lift is installed and we get it back. It has been a hard few years getting her in and out and that wheelchair out of the van. The girl likes to go, go, go all the time and doesn’t understand that Mommy can’t get her in and out of the van several times a day with her wheelchair. Once we get our van back, watch out. I’m sure she’ll have me taking her to every mall in Texas so she can shop!
Hope you all have a blessed week!
Love,
Mindy
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