Disney Update
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
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