Filling in the Gaps & Catching Up
Harry Potter Land (Dec 16-21)
Scott, Cami and Ash got to go to Harry Potter Land to celebrate their graduations. According to Scott it was so much fun that at the end of each day they were all super exhausted. When I asked him to write out a little summary he said, “Ask Cam or Ash I bet they already have one.” Of course Cami did-- thanks for being such an awesome sister!
Harry Potter Land
highlights from Cam:
-first seeing the castle while hearing the hp theme playing in the distance as we walked towards the [magical] wizarding world of harry potter.
-luna lovegood in the bathroom.
-butterbeer (i need to find the real recipe).
-dragon challenge ride, shortest lines always and for sure one of the best rides in the whole park.
-looking in all the window shops, they had so much detail i just wish they had more shops open to walk around in.
-seeing magic happen as the wand choose the wizard at ollivander's shop.
-trying to guess which movie the song that was currently playing was from.
-eating at the three broomsticks.
-hearing harry potter music all of the time.
-honeydukes.
-feeling like i was only a few feet away from dumbledore, harry, ron and hermione. love holograms.
-purchasing my own wand (a replica of luna lovegoods) and one for dies (a replica of viktor krums because he's the most manly man in harry potter).
-getting a picture in front of the hogwarts express.
-purchasing far too many souvenirs: 2 wands, a jacket, a hat, a necklace, a key chain, a griffindor quidditch jersey...
-seeing our friends from Beauxbatons academy and Durmstrang perform.
-sending postcards to our muggle families back home.
-drooling over the sweet robes, a legit marauders map, and other attire at the stores (one robe=100 big ones $$).
-i could go on and on. basically it was a wonderfully enchanting weekend at the wizarding world of harry potter. oh yeah and at universal studios. we had a lot of fun there too. the three of us definitely got in all the rides we could handle for those three days.
Christmas
Cami and Ash stayed with us for Christmas (until the 29th), which we were all excited about. The day after they arrived Cam and Ash volunteered to watch AZ while we went to the long awaited neuromuscular doctor, Dr. Fequiere. The visit was exactly what we hoped it would be. Dr Fequiere was exactly as wonderful as everyone had told us. He took his time with letting Adi feel comfortable, she laughed and happily did anything he asked of her, he knew her history, we spent 3 hours asking questions and getting answers from him. The orthopedic surgeons we had seen in Birmingham and Pensacola both negated Adi’s lose diagnosis of arthogryposis. When we asked him for a diagnosis so we can continue getting the services and supplies we need for her, he said he felt comfortable saying it was CP. Then on the 27th he called me to say that as he was typing up his notes on Adi he kept thinking about Segawa disease. I smiled feeling grateful for his dedication and listened intently as he described the disease and his plan on what we needed to do. He then told me to talk to Scott about it and do our own research and then call him back to let him know if we wanted to start the discovery process. After talking to Scott and a prayer we decided to go with the Doc’s gut feeling. We started Adi on dopamine and within a few days saw a big difference in her walking and endurance. A few days later Scott discovers we had been medically denied to go to Warner Robins. I had been looking at different foreclosured homes around Robins AFB that would have been idyllic for our family. We had been planning on going out to see if we could start the house hunting process, looking into schools, hospitals, doctors, etc but it all got put on hold to start the appeal process. When we finally found out we had won the appeal, Scott was to report to SERE training in two days and to be gone until our window would open to move. I was a little overwhelmed knowing what I had to accomplish before Scott returned. I needed to go find a home, which we did by leaving for GA the day after Scott left. We stayed there for 3 days and saw 32 properties, the girls did very well. When we returned to FL we packed up our house on our own in hope that we could make some extra cash on this move like we had on the last which later proved to have not been worth it. I needed to make sure I had all the medical paperwork nicely organized to make the medical transition as easy as possible, get a new DME company, taking Adi to all her appointments before moving (since it would possibly be months before we could get things arranged to have her meet with the new specialists at our new home. Hindsight being what it is I should have just had a packing company move us and distracted myself and the girls by playing with friends and not with packing. Since I am thinking about it I just want to take a second and thank all the men and women and their families who serve our country. My heart goes out especially to those who have endured loved ones going MIA or being captured behind enemy lines. I can’t thank you all enough for the sacrifice you have all made for our country and our freedoms.
Filling you in on Jan- Mar:
* Just as things were finally calming down with all the medical appointments (4 hour car trips to Birmingham) it is now time to move and start all over again. I cringe at the thought of having to get all the referrals for all the many doctors, equipment, schooling, etc done all over again. I know GA is where we need to be and we are looking forward to living there for several years so if all goes as planned I won’t be having to do all this again for a while.
* Scott was home a lot during Jan & Feb while he waited for SERE. While he is around he is the only person Adi wants to be with so by default he puts her to bed and deals with meds. I am grateful for the time I have alone when he is around. My favorite thing about him recently has been going to look for him and hearing from several feet away the sounds of Dad playing with two laughing girls. When I am heard coming the three hide, normally under the covers and giggle until they are found.
* We have tried everything to to get Az to stop sucking her thumb. We bought awful tasting nail polish, tried dipping her thumb in hot sauce, and taped it. Nothing worked. When her thumb wouldn't taste good she would just walk over to her bathroom and wash her hands until the taste was gone. I am often reminded she is not my baby anymore she is my big girl. One day I finally got the idea to reason with her. One night I explained to her only babies suck their thumbs and since she's not a baby she shouldn't suck the thumb. She took out the thumb and just looked at it with longing. Finally she put her thumb as close as she could to her lips and asked is this ok? Smiling I hugged her and told her it was. By the time she fell asleep the thumb was back in her mouth. When I see her sucking her thumb I remind her she's a big girl to which she responds by quickly taking her thumb out of her mouth and then turning around or hiding so she can continue with her thumb in her mouth. What's a mom to do?
* I can’t start to explain how awful it is to know your husband is being tortured, even if it is by friendlies. Everyday the girls and I pray for his ability to endure and have his burdens made light. They say what doesn’t kill you just makes you stronger and I am starting to understand the meaning of that phrase a little better. What doesn’t kill you teaches you lessons about what is most important in life. It makes us more willing to turn to higher powers for help and teaches us how to turn to our Father in Heaven for true strength and peace. When Scott was leaving for this first part of training he called and we said a prayer together to which we both ended crying. When asked why I was crying by the girls I answered I am just crying because daddy is going to be very cold (blizzard conditions) on his training. Az came over kissed me and said “no worry mommy daddy got a jacket.” For the next couple of days she would just remind me at random “daddy got a jacket.” I knew Scott would make it out ok but when I would allow my mind to wonder my girls were always there with unsolicited hugs and smiles. Oh how I love those moments.
As you can see Cam and Ash were asked to
provide cute hair and nails
Cute matching outfits from Ash and Cam
