Here are a few new pictures of Savanna and Boston. Enjoy!
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25Aug
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22Jun
I think it’s time to lower the mattress on Boston’s bed. Just had to send this picture of him trying to climb out of his crib. Does he not understand he is only 4 months old????? Silly kid will be crawling within a few weeks. He is already up on all fours rocking and can get all around in the crib as it is.
This picture is from Savanna’s very first stage performance. She went to music camp last week and they had a program at the end of the week, an Old MacDonald type of program. She wanted to be one of the chicks because they got to wear yellow boas and her favorite color is yellow right now. She did great and was so proud of herself.
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16Mar
I'm SMA free!
Hello everyone. It’s hard to believe our baby boy will be 1 month old on Tuesday. We finally got his test results back and I am thrilled to say that Boston does not have SMA! He is a carrier, but that’s not a big deal to us. I want to thank you all so much for your prayers for our family.
I have been waiting to do a Savanna update until I had news on Boston and never expected it to take so long to get his results back. We had his blood drawn the day after he was born, but with genetic testing and waiting on doctors, it took until today to get confirmation of what we already believed to be true.
I can say that it was a long 9 months and an emotional roller coaster of worrying about him. Even though my faith is strong and I truly believed that whether he had SMA or not, he was absolutely, 100% the child God intended him to be and the brother He intended Savanna to have. I would worry when he wasn’t moving, moved too little, etc. I would get teary eyed thinking about the “what ifs” and the daily challenges we would face with having two children in wheelchairs and how would our van be big enough to hold both of them. I think about Tim’s Aunt Karen and how she has done such a remarkable job raising 2 children with SMA and wonder how she has the energy to do it. Her children are both Type 2, so they are quite a bit stronger than Savanna and don’t have the breathing issues that Savanna faces. But they are such an incredibly strong family.
As for Savanna, she is doing wonderful. She had the chicken pox 2 weeks before Boston came and then got the flu 3 days after he came home from the hospital. So it has been stressful here at the Rush home. I had some complications after delivering him and had an emergency D & C, so I was a bit anemic the first few weeks we were home from the hospital. But I think we are all better now. Savanna absolutely loves her little brother and is a great big sister. She has not been jealous at all and it doesn’t seem to bother her one bit when he screams his head off! She is very tolerant! We were saying her bedtime prayers a few weeks ago and I reminded her to pray for Boston, that he did not have SMA. She looked at me and asked, “What is SMA?” I thought that was so funny because we have talked about it numerous times and about how her muscles are weak, etc. I asked her if it ever bothered her that she is in a wheelchair and she said No. She is such a blessing! I was dreading the chicken pox and how it would affect her since she can’t scratch herself. I thought we would be in for a miserable week, but she hardly complained at all. She got her oatmeal baths every night and being the sneaky one, she asked her nurse for her toothbrush during one of her baths. She then proceeded to use the toothbrush to scratch herself. She’s such a character that way!
As for Boston, or Tim’s Mini Me, he is doing great. He loves to eat. I am attaching a few pics of the kids. Sounds funny to say “kids”, although I always said I had 2 — a 6 year-old and a 40 year-old. Tim and I will be celebrating our 10 year anniversary this month — funny that we never imagined we would have a newborn at our 10 year anniversary. Life is full of surprises. Savanna was a flower girl this weekend in my nephew’s wedding. She did a great job and made us all proud, as I figured she wouldn’t go thru with it. I am attaching a pic of her doing her “flower girl duty” and one of her “feeding” the baby.Savanna will be starting baseball again in a few weeks with The Miracle League and her cousin Sam will be on her team. Opening Day is Sat, April 5th if anyone is interested. On Opening Day they have bounce houses, face painting, and other fun stuff for the family. Not sure what time her game is yet, but email me if you are interested. They play at Randol Mill Park which is on Randol Mill Rd, just west of Fielder in Arlington.
I’m staying busy with school this semester and just applied for nursing school at TCC. I should find out next month if I got accepted, but it is so competitive that I’m not sure what to expect. They typically have 400 applicants each semester and only accept 100 students. They base acceptance strictly on GPA, number of pre-requisite courses you have completed and how well you score on the nursing entrance exam. I am exhausted and looking forward to this semester being over and taking the summer off and hope to have Boston on some sort of “schedule” soon. Tim is still trying to get full-time at Fed Ex and has just opened the concession stand at the softball field here in Saginaw and looking for a spot for our snowcone trailer. He is enjoying having a 2nd child that looks just like him and can’t wait to “show Boston his moves.” Just doesn’t seem fair that I go thru the pregnancy, nausea, heartburn, gestational diabetes, pre-eclampsia, D&C and they come out looking exactly like their father! I do all the work and he gets all the glory!!!! LOL
We appreciate all of your prayers and are just extremely thankful for the good news on Boston. We are just trying to enjoy every moment of him, knowing that this is the last baby for the Rushes. I’ll try to send another update soon. Blessings to all of you!
Love,
Mindy -
19Feb
We welcomed Boston Michael Rush into this world Monday, February 18th at 7:45 am weighing in at 8lbs 4 oz. 20 3/4 long. Mindy is now recovering and will be home with Boston on Wednesday. Here are a few pictures of Boston. Thanks for keeping us in your prayers and look forward to seeing you soon.
Tim
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11Aug
I am so behind on doing an update; I can’t even remember when the last one was. I can tell you all that Savanna is doing great. 16 more days!!! All of you moms out there know what that means. 16 more days until school starts back! I am SO ready for her to go to school all day that I will probably be the only mom at kindergarten NOT crying when I drop off my child. I’ll try and wait to do my happy dance until I am out of eyesight of everyone! J I’ll be like, “I’ll see you at 3:00,” with a grin from ear to ear. She is so bored here at home and it is just too hot to take her to do anything during the day. Most of our outings are in the evening. Even swimming has to wait until about 9:00 at night so that Princess doesn’t burn.
I can’t believe how big our girl is getting. She was measured yesterday at the doctor and I was surprised she is only 43 pounds and 41 inches long. She feels like she weighs about 70 pounds. She saw her pulmonologist yesterday and she is very happy with how well she is doing and that her lungs look great. She saw her orthopedic surgeon last month and he is also thrilled with how well her back has done and that everything is still in place; nothing has come loose. He says we can wait at least another year before having to lengthen her rods again. Yea!!! Motor Mouth pretty much runs the house around here. She talks non-stop; so much so that I find myself asking her to play the “quiet game”. Can Mommy just have a few minutes of you not talking and asking me questions? It never lasts for long. In fact, we just got home about an hour ago and I was carrying her into her bedroom to get her ready for bed. Her ventilator was off, which means she can’t talk. Now don’t let her kid you. She can be off the ventilator for hours at a time, if she wants to. Normally we put her passie muir valve on that closes off her trach and it allows her to talk. She doesn’t like it because it interferes with her motor mouth. She has to push air up from her tummy to talk, which makes her speech a little choppier, so she doesn’t like to be off the vent for that reason. When she goes swimming, she wears her passie muir valve. Anyway, so tonight I am getting her ready for bed and I took her off her ventilator for a minute to get her changed and stuff. I decided I liked the peace and quiet so much that I would leave her off for a few minutes (I was right there with her the entire time) and teased her about how nice and quiet it was because she couldn’t talk. She would just smile as she waited for me to get done and put her vent back on. Once I did, she said, “Don’t do that ever again.” She didn’t like not being able to give me her 2 cents worth and bossing me around as I picked out a nightgown and did all of the usual bedtime stuff. Pretty sick, huh? My sense of humor has become warped.
I managed to finish summer school without killing anyone. That was a feat in itself. Anyone who ever decides that taking Microbiology in summer school is a good idea should have his or her head examined. I had to sit thru class (lab and lecture) for 5 hours a day, M-Th. Did I mention I hate sitting in class? I was disappointed that I finished with an 89.1 and the teacher would not give me the 4/10’s of a point to make it an A, but will have to be happy with a B. When I was about 3 weeks into my 6-week course, we were surprised (shocked actually) to discover that I am pregnant. Yep, preggers. Me! Most of you know that I don’t get pregnant easily. I had to take Clomid (fertility drugs) to get pregnant with Savanna. We tried again a few years ago and did finally get pregnant, but had a miscarriage in Dec of ’05. We pretty much decided after that, that if God wanted us to have more children, He would have to orchestrate the entire thing because I couldn’t go thru the emotional roller coaster of trying again. Then I started school and have just been busy with that. Now the only reason I was taking Microbiology in summer school was because it was the last science course that I needed to apply for nursing school. I wanted to take it in summer school so that I would be able to apply for the Jan nursing program, which the deadline to apply is September. Surprise!!! Guess I will have to put off nursing school for at least a semester now.
So, I am due February 21. I have passed the first trimester and felt that is was safe to share our news with the entire world. Savanna is thrilled. She had been praying for a baby brother or sister for a while. She LOVES babies and can’t wait for the baby to arrive. She says she will help change her diaper, feed her, read her books, sing her songs, put her clothes on, give her hugs and let’s not forget, put her lip gloss on. We hope she is not disappointed if she gets a baby brother instead of a baby sister. Otherwise I guess that baby boy will look really funny wearing pink lip-gloss! Okay, so now to answer a few questions that I know a lot of you are going to want to know and may not feel comfortable asking. 1) Yes, we have a chance of this baby having SMA; our chances are 25% each time we have a child. 2) No, we are not going to do any testing while I am pregnant to determine if this child has SMA; they would have to do an amniocentesis and finding out will not affect our having this child or help us “prepare” any better. We will have a blood test done as soon as the baby is born and should know within about 7-10 days if the baby has SMA. Of course we are praying that this child does not have SMA, but we also realize that is out of our hands. As a good friend of mine once said, you have a 25% chance of having a child with SMA, but you have a 100% chance of having the child that God wants for you to have. We will also harvest the cord blood, as I believe there is a good chance that could hold a potential cure for SMA. I did have a first trimester sequential screening done, because of my age. It is amazing that these old eggs got pregnant! Our chances of having a Down’s Syndrome child are 1 in 570 and our chance of having a child with Trisomy 18 is 1 in 10,000. Having the screening done brought our chances done significantly. Again, the outcome of the tests would not have altered the pregnancy in any way. I had to see the perinatologist because of my age and they suggest the first trimester screening which consisted of a sonogram and blood testing. I will see the specialist again at 16 weeks, but she said at my last appointment that she was very happy with how everything looked. I should not be considered high risk unless they find something abnormal at one of my appointments. Otherwise I am seeing my regular OB/GYN for the entire pregnancy and will deliver at Harris downtown.
Savanna did have a bronchoscopy in June. That is when they put a scope in her stoma (that is the hole in her neck where the trach is) and look at everything. A year ago she had some granulation tissue, but this time everything looked great. They just sedated her lightly for the procedure. She was supposed to already be “asleep” when I left the room, but she for some reason had some extremely high tolerance to the sleepy medicine and I had to leave the room while she was still awake. One of the hardest things I’ve had to do, leaving my daughter bawling her eyes out. They gave her Versed, which is supposed to make her forget everything. When I got to recovery to see her, she was already awake and crying because I was not there. She really put the guilt trip on me as she told a friend of mine that night, “Did you know that Momma left me all alone in the hospital today?” Stupid Versed! Didn’t make her forget anything did it?
I think I never sent an email to tell you all how great the rummage sale went. That was during the whole summer school, early pregnancy thing and I was doing good to keep my head attached and remember my name at that point. We did awesome; raised over $5,000. We sent a good chunk of it to FSMA and used the rest for some of Savanna’s expenses. We are going to Disneyworld Oct 21st for her Make a Wish Trip, which we are all thrilled about.
Savanna is now registered to play baseball with The Miracle League. It will be in Arlington and it is baseball for special needs kids. It does not matter what their disability is, they get to play. Savanna’s best friend, Delanie, will be her “buddy” which means she will help her swing the bat or do whatever Savanna might need help with. They can either hit the ball off a t-ball stand or have the coach pitch to them. Each inning, the last batter automatically gets a home run. We are so excited about her getting to play. We went out to the ballpark last year when they had the dedication ceremony. I was getting teary-eyed watching those kids play and see how happy they were to be involved in a team sport. Now being pregnant and watching my own child, I’m sure I’ll need a box of Kleenexes at each game! Her games will start Sept 29th and it is only a 6 game season, which we will be out of town for 2 of those weeks. Once I get a schedule, I will email it to all of you. She would love to have her own cheering section. The ballpark is right off Randol Mill Road.
I think that sums up the Rush happenings. I am attaching a few pictures. One is of Delanie at the rummage sale. She wanted to do something for Savanna, so she organized a lemonade stand and raised $275! She even designed t-shirts for her and Savanna to wear, which you will see in the picture. I forwarded the picture to FSMA and they wanted permission to use Delanie’s design for some kid t-shirts. Once we saw the shirts, we all had to have one. So mine says Cure SMA for my daughter. Only now I can’t wear it because my tummy sticks out too much. Some guy that we didn’t even know won the amazing grill that Elkins Hardware donated; I think he was an Elkins customer. But we made over $1,000 on that alone. Please keep the Coggin family in your prayers as they are approaching the 1-year angel day for Grace. They are expecting a baby boy around Thanksgiving and he is SMA free. As always, thank you for continuing to keep our family in your thoughts and prayers. I always feel so privileged to get to see what a blessing Savanna is to so many people. I know that she is going to be an amazing big sister and looks forward to the big day. Hope you all have a blessed week!Love,
Mindy -
23May
My mother came over to babysit this morning and said she wanted to interview Savanna about her angels, since Mom was going to be teaching a bible story about angels to her kids at church on Sunday. I had to share with all of you the incredible things that Savanna told her about her angels. I put Savanna’s answers in italics.
Do you believe in angels?
Yes
Have you seen any angels?
Yes. (She said that she sees them every day at night and in the morning and when she is in the van.)
Do they talk to you?
Yes; (but she doesn’t understand what they say.)
How many do you see at night?
4
How many do you see in the morning?
5
Do they have names?
Aunt Connie, Aunt Kelly, Erica, Bailey Boo and Mamaw (that’s what Savanna calls my mom).
*Now I have to give a disclaimer with this answer. Before any of you get upset that you don’t have an angel named after you, just notice that I am nowhere on her list as well!
Do you see them in the air?
Yes, up in the sky.
Do they have halos?
Yes
Do they have wings?
Yes
How many are in the van?
2 in the front and 5 outside and around the van
When she asked her how they made her feel, she said they make her feel happy and safe. They make a beautiful sound; not singing or instruments.
When you had the bad spell coming home from Waco, did you see them?
Yes, when she got in the house she saw 4 angels around her bed. Here’s where I start crying because I took her out of her wheelchair and ran with her in my arms to her bed to try and get her airway clear; by the time we got to her bed, she was barely conscious and her lips were gray. They talked to her, but she didn’t understand what they said.
On Sunday she sees 4 angels in her class. When she goes to school she sees 6 and there are 4 on the school bus.
Do any of the angels hug you?
Yes, but only one: Erica..
She saw 4 angels outside while Mamaw was talking to her. She asked if Mamaw saw them (she didn’t). She then said, “Oh no, they are flying away.” Then she told Mamaw to come back. When Mamaw looked up, she saw 4 birds flying in formation with one trailing behind.
She sees 1 angel at Aunt Kelly’s church. She sits next to her at church and flies up in the air and on the stage.
I then asked her if her angels were big people like Mommy or little people like Savanna. She said they are all big like Mommy and one is little like Savanna and they are all girls. The one that is little is Erica.
Just had to share as this really touched my heart. I hope that when you are having a bad day, you can remember Savanna’s story about her angels and it will brighten your day.Mindy
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24Apr
Well, it’s 3:00 a.m and I can’t sleep, so I decided I needed to write a much overdue Savanna update. My heart is heavy as we are waiting to hear about another girl in our SMA family. As I lie in bed praying for Kalair, I also can’t help but be so thankful for my own miracle child. It’s been a tough year. We have lost more SMA children that we have personally known this last year than in our entire lives dealing with this. Talk about a wake up call. I am now asking you all to pray for Kalair and her family. They don’t live here; not even sure where they live; somewhere up north. She is 7 years old and also a Type 1. She went into the hospital this weekend with some type of virus/illness. She, as well as a lot of other Type 1 children, is on a specialized amino acid diet. It is a diet that many SMA parents swear by, obviously giving their children more strength. We looked into it for Savanna, but I never felt at peace about it and I also spoke with a few of her specialists who felt she was doing great on the diet she was on that we should not change things. The short of it is that the amino acid formula must be double diluted for SMA children, otherwise it may be toxic to their systems. Kalair, although in ICU, was doing rather well and improving. However, somehow the hospital did not dilute her formula properly and she is now unresponsive and MRI shows damage to her brain. So please pray for Kalair to have a full recovery and for her entire family. We just lost one of our Texas babies last week, down in the Houston area. It is times like these that I feel so blessed and privileged to have Savanna. We went thru our own scare with her last Sunday, another familiar reminder of how fragile her life can be. We had gone to Waco for the day and being on the road so long dried her out. She got a mucous plug in her airway when we were headed back into town and by the time I ran her into the house, she was pasty white and starting to lose consciousness. Another grim reminder of life with SMA and another night of me feeling guilty of what she has to go thru.
But there are always the “Savanna blessings”. Thank goodness for those. That is what keeps me going each day. After she recovered from her episode last Sunday and I am hovering over her crying, we talked about what happened. I told her she could have timed it a little better since we had just lost Mia, the little girl from Houston the day before and Mommy was a little stressed out. She says, “I’m sorry Momma. I won’t do that again.” She said this one scared her too, but as always, her angels were right there. As I am lying there holding her and wondering how I can run to the store and buy her a horse (she always asks for one and at times like this I would fly to the moon if she wanted me to) she starts telling me that her head hurts and she doesn’t feel good. The mommy guilt thing is kicking in as I am thinking, “Wow, I guess I would have a headache too if I had just gone thru that, not to mention the back-to-back breathing treatments she just had.” Okay, so I am feeling so bad for her and she is really milking this thing as she then says, “I don’t think I can go to school tomorrow; I think I won’t feel good tomorrow.” Aaaahhh….she’s BACK!!! Nice try, I tell her. There will most definitely be school tomorrow. I will let her sleep a little later and take her to school rather than riding the bus though. Can’t blame the girl for trying, huh?
I’m so glad to see her pull the normal 5 year-old stuff like that. I love when she foresees the future and claims that she probably won’t feel good tomorrow. It’s not the first time she’s tried this. She’s done that before until I remind her that the next day is library day at school and then she gets a miraculous recovery and decides that maybe she’ll be okay tomorrow after all.
s some of you know, she just got her hair cut off last month, 10 inches. She wanted to donate her hair to Locks of Love so another little girl could have her beautiful hair. She wants to know what the little girl’s name is, but I told her we don’t get to know that information. She’s been ready to do it since the Fall after she saw Aunt Teresa donate her hair. Mommy just needed a few months to come to terms with it. She looks so cute with her hair shorter, but she certainly looks older. She immediately liked it. Says she likes it long too, but she likes it. She’s into all the typical pre-teen stuff. Yes, she is 5 going on 12. She’s been boy crazy since she was about 3 years old. She was sad to see Sanjaya get the boot on American Idol, but says she likes Jordin, amazing since she is a girl. She LOVES Zach and Cody and insists that they come to Texas to meet her and spend the night with her, but she does specify only Zach; Kaitlyn (our neighbor) can have Cody. We went to see one of her specialists about a month ago and she is cruising along in her chair as she comes thru the door until she sees the cute boy sitting in the chair by the door. She stops her chair dead in its tracks and just inches by him, going ever so slowly while just staring at him and smiling. It’s pathetic!!! The worst part about it is that he was like 15!!! I told her to stop flirting with the cute boy and come on already. I’m afraid to see where it goes from here!
We have contacted Make a Wish and will be going to Disney World this October for Savanna’s wish. We are so excited! We’re taking a caravan down there so anyone is welcome to go with us. Another blessing has been Savanna’s new best friend, Delanie. I had been praying for God to bring along a friend for Savanna. That’s one of the hardest things we deal with is her having a friend that will come over and play with her and help her by holding her arm for her and including her. She has other little friends and they are great too, but usually they tend to forget about her once their able bodied friends are around. Just normal kid stuff. Delanie has been a Godsend. She loves Savanna unconditionally and plays hide and go seek with her and helps her play by holding up her arm and just everything. And Delanie is such a wonderful child who comes from a great family. A few months ago when Isabella was in the hospital I went in Savanna’s room to tell her and Delanie about Isabella and tell them we really needed to pray for her. They both stopped playing and closed their eyes and said a prayer for her right then. Savanna knows that is something she can do for people. When I was really stressed out last week and had a bad day she said, “Why are you upset Momma? I can pray for you.” I was so touched by her sweetness and kneeled down next to her so she could pray for me and she says, “but not right now. I’ll pray for you later.” Well she got me to laughing. I’m glad to see that she never loses her sense of humor.
As for us, we’re just plugging away here. I am almost thru this semester and have signed up for summer school. I’m hoping to get these last 2 classes done this summer so that I can apply for the January nursing class. Tim is still part-time at FedEx. He looked into changing jobs, but nothing ever came along and we felt he should just stay where he is at. He has been there 3 years now and so he will be fully vested in 2 more years. We’re still praying for a full-time day route to come open for him and he does lots of side jobs in the meantime. We have pushed the fundraiser back to November 10th, so mark your calendars. We will be having a rummage sale for Savanna/fundraiser sometime in the next month, so if you have anything you would like to donate, let us know. Life has been pretty stressful for us, so I appreciate you keeping us in your daily prayers. Give your kids a hug and be thankful they are healthy. One last thing, I have to brag about how strong Savanna has been getting. She has been holding her head up and yesterday in therapy she even held her trunk up for a few seconds. I know that is a result of all the prayers for her and she is still praying daily for swallowing. She has a new occupational therapist who is working on oral motor skills so I believe we will see great improvement there and am awaiting for her swallowing to return. As always, thank you all for being a part of our lives. We are blessed beyond belief! Here’s a few pics of Savanna. One from Spring Break and one after her haircut.
Love,
Mindy -
07Nov
I hope this long overdue newsletter finds everyone doing well. I have meant to sit down and write a Savanna update for so long now, but just can’t seem to find the energy to do it. I notice that when I sit down for more than about 30 minutes, my eyes have this habit of closing. For those of you with teenagers, tell them to finish college the first time. It’s way too hard to do when you are 36 years old and have a family and other commitments! I realized it would be hard, but just didn’t think it would be this hard. Oh well, anything worth having doesn’t come easy. Or something like that….
Savanna is doing great. I don’t think I ever updated anyone on the Disney trip or anything since then. With everything that went wrong on our trip, I think we deserve kudos for not getting a divorce or coming back with some nasty addiction like crack or something! No, we really had a great time. I’ll just warn you all now that you should not even consider taking a vacation with the Rushes, because crap will happen! If we try to convince you otherwise, just say two little words…remember Disneyworld? I think instead of Murphy’s Law, it was Rushes Law. We did get the new wheelchair a few days before the trip. We got the van loaded and headed out the door. Got all the way to Arlington (TX that is) to stop for some lunch and Savanna asked, “Are we in Florida now?” Almost honey….just 18 ½ more hours to go! We managed to drive straight thru to Florida in about 18 hours. We got to our condo in Florida and Tim thought he would “help” Savanna drive her new chair onto the elevator. First mistake. He “drove” her right into the wall and pinned her feet up against the wall. I was a little cranky after the 18 hour haul and I’m sure that I politely told him that he had rammed his daughter up against the wall, since he could not see the tears streaming down her face and the silent “it hurts so bad I can’t scream cry”. Well, he went to back her up and wham, rammed right up against the wall again. I was sure that her feet were broken because she cried for like an hour (which is a long time for Savanna). We managed to get her up to the condo without doing any more damage and since I had not done any breathing treatments on the road, she had a mucous plug and needed an emergency trach change. Started losing color really fast, needed a trach change. Got that situation under control. All of this was just in the first 15 minutes of being in Florida. We also found out that you should not go on a trip without her reflux medicine, because even though she had not had reflux in months, she would have it in Florida. No need to take beach vacations anymore, because as it turns out, Princess does not like sand because she gets dirty. Kind of wished we could have figured that one out before we had hauled the blanket, umbrella, disconnected the ventilator, battery, suction machine, backpack and Savanna down to the beach.
So, Disneyworld here we come. Now the fancy new wheelchair has it’s own internal battery for the ventilator, so we did not need to carry the 25 pound car battery with us anymore (or so we thought). We made it to Downtown Disney to meet Aunt Connie for Savanna’s Princess Makeover in the Bippidi Boppidi Boutique. Savanna loved that. She got a beautiful Cinderella dress, shoes, makeover and photo shoot. While waiting in line for her photos, the ventilator starts beeping power low. Of course we left the 25 pound battery back in Daytona (90 miles from Orlando). So poor Tim had to drive 180 miles to get the battery so we would have it for Disney the next day. The time share condo we stayed in was beautiful. Definitely the way to go. For $55 we got a great 1 bedroom condo for 2 nights and 2 free tickets to Disneyworld. All we had to do was sit thru the little 50 minute presentation for that. So, we are off to Disneyworld for the trip of a lifetime. Did you know that it is extremely hot and humid in Orlando in July? Well if you didn’t know that, the Princess will let you know. Princess does not handle heat. We made it about 2 hours before having to go get air conditioning for her. Now our friend Scott had scheduled a private meet and greet for Savanna to meet all the Princesses and their Princes. Nobody gets to meet the Princes! This was an exclusive thing that we were only able to get because of Scott working at Disney. That was fabulous! It was just amazing to meet each one of the Princesses and their Princes. We looked like the Beverly Hillbillies with Savanna’s wheelchair strapped down with a car battery (at least we didn’t use duct tape). Had a wonderful dinner in Cinderella’s Castle (thank you Aunt Connie) and got to ride a few rides and have front row seating for the Parade. It was awesome! I can’t wait to go back to Disneyworld again, although we will go in like Feb next time instead of the hottest month of the year. I was thinking all of our bad luck was behind us. We were on the tram back to the parking lot and the suction machine fell off the Hillbilly wheelchair. Now the suction machine is the most important piece of equipment. Savanna requires constant suctioning and if she gets a mucous plug, she can’t breathe. Well, you guessed it….the suction machine broke. So our tour of Orlando included a trip to the ER so we could get a working suction machine. We had about 45 minutes of driving in circles trying to find the hospital and a broken suction machine and a whole lot of praying!
Savanna did wonderful on the trip. We were gone for about 9 days and she is such a trooper. She never complained about wanting to go home, even with all that went wrong. She really enjoyed getting to visit with her grandparents and aunt and uncle. At least now we know what to take on a trip and we know that Savanna does well with traveling, so we hope to make Florida trips much more often. With all that went wrong I was afraid the van would blow up or something! Needless to say the wheelchair issues have been worked out and I didn’t kill Tim. I hope everyone knows that when I make jokes at his expense, it’s really not his fault. We just happen to be put in some very stressful situations quite often and we have found that laughter is the only way to get thru it.
Since the trip Savanna has had another successful scoliosis surgery and her fundraiser. Both went great. We don’t have final numbers yet from the fundraiser, but it looks like we will have close to $40,000. We are still waiting for a few checks to come in from sponsors. Good news on our side is that Savanna has finally reached the top of the list for Medically Dependent Children’s Program, which will give her Medicaid. She has been on the waiting list for 4 ½ years. Once she has Medicaid, we won’t have out of pocket expenses for all of her doctor visits, prescriptions, etc. The bonus is that Tim has the opportunity to look for another job. He loves FedEx, but he is still not full-time. So we are praying that a great job will come his way!
Savanna had her first trip to the dentist a few weeks ago and did great. She has already lost 3 teeth and is growing like a weed. She continues to rule the roost around here. I always tell her it’s amazing I made it all those years without her bossing me around. She has quite a sense of humor as well. A few weeks ago I thought I would play a trick on her and move her Princess dolls around. You have to understand that each doll has its place on a shelf. She is quick to let us know if someone puts one of the dolls in the wrong place. They take turns getting to “spend the night with her” (which means they sleep on her bed). She quickly realized the dolls were not in right order, so started telling me which ones I needed to move and where. Being the good Mommy that I am, I followed directions and didn’t question her. As soon as they were in their rightful place I asked her how they might have gotten in the wrong place. She thought her grandmother must have done it because she must not know what order they go in. I thought I had gotten away with it until I started to leave the room and she said, “Don’t do that again Momma.” When I asked her what she meant, she said, “move my dolls around.” I got a good chuckle out of that. I reminded her that if her Uncle Mike were around, those dolls would be hanging from their toes and be in all kinds of places! Her new thing is knock-knock jokes. The problem is she only knows 2 and she will wear you out telling the same jokes all day long. She’s so bossy, she tells you what you are going to say and when! Anytime the phone rings, she must know who it is, where are they, what are they doing, what color is their Mommy’s hair, etc. She loves to take prayer requests and if you give her one, she will pray for it every night without fail. When you give her one, she says, “Okay, what else?”
As usual, she is the light of our lives and keeps us on our toes.In closing, I again thank you for your prayers for our precious one. I would like to ask you to keep the Coggin family in your prayers as it has only been a little over 2 months since Grace earned her wings. Keven and Kelly are doing as well as can be expected, but even I cannot imagine the depth of their pain and I live with this disease every day. You really don’t know how much you can love another person until you have a child. Even knowing what a gift each day with Savanna is, I can’t imagine the pain of not having her here with me. Also, the Gonzales family as little Isabella has been in the hospital over 2 weeks now. She was also at our fundraiser and just turned a year old not long ago. As always, thank you for your support and love. I know that God has many plans for Savanna and just reminding us all of our daily blessings is one of them. We appreciate you keeping our family in your prayers.
Love,
Mindy -
12Jul
Hello everyone. I will keep this one short, because I am so tired, but I needed to send out an email to ask for prayer requests. First of all, Savanna is doing great. We are leaving this Saturday to drive to Florida for a family vacation/high school reunion and for Savanna’s first trip to Disneyworld!!! We are very excited here in the Rush household as this was a last minute trip. So I would like to ask you all to cover us in prayer for safe travel, for us all to stay healthy and have a wonderful trip. We will be driving to Daytona Beach to visit family and for Tim’s high school reunion and will go to Orlando for a few days so Savanna can go to Disneyworld and meet the other Princesses. We are looking forward to having the time of our life. We will be gone 10 days since we are driving. We should get back home the 24th and then Savanna will have her 2nd scoliosis surgery on the 27th, which brings about the 2nd prayer request. I have to say that my little trooper has taken the news of having another surgery like it is just another day. I decided to tell her about 5 weeks ago that her surgery was coming up. I have to admit I was very nervous about telling her because I thought she might have enough sense to be scared of the hospital and having surgery now that she is the big almost 5 year-old. She was driving thru the kitchen when I told her that we needed to talk about something. She is driving along and as I told her that she would have to go into the hospital again soon to have another scoliosis surgery, she stopped dead in her tracks. Yikes!!! “Awwww man, I have to have another surgery?!” was her only reply. Whew. Got thru that one. I reminded her of it a few weeks ago and she just said, “Okay.”
So my 2nd prayer request is that she will do wonderful thru surgery again. I am praying for Dr. Gray, her orthopedic surgeon to perform another great surgery and for Savanna to once again amaze everyone with her speedy recovery and that she will touch each person that she comes into contact with at the hospital, as she always does. I always pray that she will make a difference in the lives of those that take care of her and I always look forward to hearing the various stories from her nurses and doctors about how much she amazes them or blesses their lives. This surgery should just involve lengthening her growing rods and also expanding her stoma (the hole in her throat where her tracheostomy tube is). The last time I spoke with her doctor, he thought he would just make a small incision at the top of her spine and extend her rods thru that incision, so I am hoping that is still the plan.
Third, along with the trip, we are praying that her new power wheelchair comes in this week and that everything will work and fit great with it so she can sit more comfortably and drive better for our trip to Disneyworld. We are so blessed to have such a great wheelchair guy that goes above and beyond for Savanna to take care of her. She is very excited about her new yellow wheelchair and we know it will give her even more freedom and independence. I think that is a good thing? Not sure since 99% of the time that she gets in trouble it has something to do with her driving her chair and not following directions. She just giggles as she continues to do what we have just told her not to until I reach over and turn her wheelchair off! The new chair will have a remote power switch so I can turn her off without having to catch up to her first! Sweet!! (yes, we really do turn her chair off and don’t even feel sorry for her).
Last, Tim’s route that he is on is officially up for bid as a full-time route. He has put his name on the list, but he feels he does not have a very good chance of getting it so I am asking for everyone to pray that he would be able to keep this route and go full-time.Savanna’s fundraiser is right around the corner and as usual, I am way behind in getting things together. If you have anything you would like to donate for the auction or know of someone that might have something, please get in touch with me. Any donation is tax deductible and I am happy to send out receipts. We are also starting to sell tickets and sponsor tables. I am attaching a copy of the letter and the info sheet so you can print them off if you are interested in coming. We always have a great time and raise money and awareness for SMA at the same time. I was heartbroken to read of another little girl that lost her fight to SMA last month. She was 9 years old and has a twin sister that also has SMA. As I read her memorial, it was as if I was reading about my own precious Savanna. Cassidy also thought she was a princess, had her own angels and was an extremely happy and loving child that loved to give hugs. The thing that really broke my heart was thinking of her twin sister who has lost her best friend. When her parents told her that she had passed on, she told them she already knew because an angel had told her. So I had to go and just hug my little girl after I read that and thank God for another wonderful day with her. As she saw the tears in my eyes, she said, “Oh Mama, you don’t feel good?” She knows that Savanna hugs heal just about everything. When I cut my foot last month and had to get stitches in it, she would ask to look at it every day and then would say, “I want to pray for Mama’s foot.” I think she wanted to look at it every day to see if it had healed yet, since my little prayer warrior prayed for my foot every day, sometimes a few times a day. Sweet, sweet girl!!!
I will look forward to sharing the photos of Disneyworld with you. We are scheduled to have dinner in Cinderella’s Castle, so I know that will be a great time. Savanna has said, “I wonder what Cinderella looks like.” I’m sure she will exceed her expectations! Thank you all for your prayers!
Love,
Mindy -
19May
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
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