We got home about 2pm and the OCD side of me tells me, "you must put everything up, start the laundry before you sit and relax", so here I am with all that done. My son tells me, "I want to eat that" so I had to fix him some chicken nuggets, get him a cup of his fruit down, although we took fruit with us and he ate every one except the one. He is home, singing and happy. His schedule was a little off these last 4 days but he rebounds fairly quickly.
You will have to wait a few days for some pictures, I have to get a cord that goes from my camera to computer to download, although I didn't take a whole lot and actually took more with my phone.
We left Thursday morning to head to Osage Beach, MO for our first destination where we would spend the night, had reservations. I didn't print off the confirmation to the motel so couldn't exactly remember the name or address, both important facts to know. We drove through the town, stopped to fill up the car with gas and GREAT thing about having Internet on your phone. We found the mall and Miner Mike's where we would be going. I received a call while checking in from Matt, Jeremy's ETL teacher and I thought he was returning my phone call about some of J's behavior the day before but his family rented a condo and they were actually in Osage Beach, when he seen my Facebook post about Miner Mike's he had just went to a conveinent store by there. We headed out to the mall, first stop Gap outlet, got a few good deals and after riding in the car Jeremy was wired so I took him to Miner Mike's where he could play. Angie and Brandi was going to do some shopping and join us. You pay $10 at Miner Mike's to do this huge, jungle gym, that has several ball pits but once you leave you are done. Jeremy played in there for at least an hour. Then we moved on to the roller coaster which he loved, did the Ferris wheel but the bumper cars were just not of interest. We tried a chicken cluck game that got him a few tickets. We were tired and hungry. We picked up Angie and Brandy and stopped at Panera bread to eat. Matt texted me and we were going to meet his family at a minature golf course but I couldn't find it. We settled in for the night.
We got up Friday morning bright and early at 8am, got dressed went to breakfast at the motel where we met Matt and visited. Jeremy had wanted me to feed him up to this point but once Matt set there by him he was showing off and fed himself well. We visited, they played and then we headed to our 1pm Pre-op appointment. I was going to get there early to meet the social worker and she was going to show me the children's floor and RMH room. We seen the 7th floor where Jeremy will be, the PICU and children's floor are right there together. The RMH room is on the 6th floor where I can go to get away and shower. I got to meet the Child Life Specialist which was good, because she got to see Jeremy why he was his active little self. She was super nice, excited that I even knew what a Child Life specialist does so I explained my involvement in our Children's Hospital. They are getting a new children's hospital in September, with private rooms like we have now. We headed over to see Dr. Scotts, who is the PA that does all the pre-op appointment, we didn't know if we would get to see Dr. Dan but it turned out he was out of town. The nurse put in history, gave us our paperwork. We then met Mike for the first time, he measured Jeremy for his brace he will wear after surgery for 6 weeks plus and Jeremy gave him heck. Dr. Scotts came in and wanted to listen to Jeremy so he was somewhat compliant and she was happy with what she got, Jeremy was released to go to the hall and went to Brandi. I visited with Dr. Scotts about the surgery. We have to keep Jeremy healthy for the surgeries, he is still on target for August 6 being the anterior repair, then August 13 being the spinal fusion. We will meet Dr. Ramachardun the day before J's surgery, he helps Dr. Dan with the anterior approach, he gets everything out of the way for Dr. Dan to do his work on the spine. The surgery will take approximately 6 hours, he is scheduled for 7 but she said he probably won't start until 9 so don't get worried if I don't hear anything. J will still go to PICU in halo traction, on pain medicine, probably won't feel like getting up much but if he wants to he will be able to. Then August 13, Dr. Dan and Dr. Khuns who assist him will do the spinal fusion which will take about 6 hours. Dr. Scotts said about the 2nd day, they would start having him sit up on the bed, then sit on the edge, then walk from bed to a chair, then start walking and he would be walking up and down stairs before going home, this will all be with a Physical therapist. She said with him having these 2 tough surgeries to expect him to be there the full 7 days after the 2nd surgery, so if Jeremy does well, recovers we could be coming home that Friday or Saturday. These are going to be tough surgeries, Jeremy could require blood transfusions, it all depends on him. The risk with any surgery is death and the risk with any spinal surgery is paralysis, these are not new news to me, but it's just the part that I hate to hear come out of a surgeon's mouth. Dr. Scott did say they have never had either happen, that did make me feel better. We had to get lab drawn, see the nurse, PA for anesthesiologist and then there were 6 different spine X-rays Dr. Dan wanted. We didn't get out of University of Missouri, Children's hospital until 4:30pm. A long day and Jeremy was mad, tired and we were all exhausted. The plan was to leave Columbia and drive to Branson, which was about 3 hours. We stopped back in Osage Beach to grab a bite to eat since we ate at 11am, and then grabbed 1/2 of sandwich at the hospital.
We arrived in Branson about 8-9, we had ran into some pretty heavy rain before Lebanon that slowed down travel. We got settled into our room, things put away and Angie went to grab us something to eat. We slept until 10am the next morning we were all tired. We did learn that all fast food places quit serving breakfast at exactly 10:30am period and end of discussion. Angie got us kiddie meals at subway's for breakfast which was fine, we were starving. We headed to the Mall and it was super hot, so going into the stores felt good. I was looking for Jeremy some new shorts he has seem to outgrow most of his, but didn't have any luck. We went to Old Navy thinking I could find some there, I always do but he ended up with a new ball and a marvel heroes metal lunch box. I went to gymboree, Gaps for kids, children's place, Disney store and nothing. I tried to get him to pick out a toy at the Disney store, he roamed and kept going back to balls. We left there and headed to Ruby Tuesday for a nice, sit down meal we were starving and thought it all sounded good and it was. Jeremy ate a few bites of his white cheddar mashed potatoes, a few bites of his mini-cheeseburger. We went back to the motel, went to the pool to play around, the hot tub felt great and Jeremy even enjoyed putting his legs in there. We then went to the Old Branson town and shopped a few more stores, this time I found J some things at the Disney store, had some really good frozen yogurt, watched the water, light, fire show to Kung FU it was neat. We headed to the motel, packed up some and by 11pm was in bed. Jeremy I think would have slept this morning, he was still asleep at 9:30, when we were all getting ready. We left Branson about 11am this morning.
We are chilling out at home, getting ready to start a new week tomorrow. Jeremy has a week of summer school left, then a week of nothing at home, then 3 days of autism camp. We then leave on Thursday, Aug 5 for his surgeries in Columbia.
It was nice to get away and have time with Jeremy, have some fun forget about life here in Sapulpa, Oklahoma, his upcoming surgeries even though we did the pre-op and talked about it that was about it. Now, that we are back home, it is time for me to start processing and deal with these complex surgeries we are facing.
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