Friday, July 30, 2010

Next Friday...

I can't believe that this time next Friday Jeremy will be in his first surgery, we will be in Columbia, MO at the University of Missouri Children's Hospital a whole new place, experience for us. I will be a basket case awaiting word that he is doing ok, surgery is going good and then won't relax until I get to see him in recovery. It will also be tough seeing him in recovery because he will have that halo traction so I won't really be able to snuggle with him, course he is going to be on pain medicine and will sleeping most of the time. It will also be tough when he starts waking up, realizes what he has on and he is going to be mad. It hit me yesterday I won't have a Pastor at J's surgery, this is the part of being out of your home support system that is hard. My Pastor can't be there, people I attend church with, our friends, our families can't be there. People just can't just run up to visit with you. That is going to be tough and I will miss that.

When I got home from work yesterday I was so tired, the house was nice and quiet so not long after I laid my body on the couch I was fast asleep and took a little nap. I got up started a load of laundry, straightened up the house then I went to Sonic, to get me a Route 44 diet cranberry-limeade, J a fresh fruit lemon-berry slush with tator tots, his favorite. I picked him up for respite and he was excited when he got in the car and see what was waiting on him. He still wanted my drink but did drink some of us, but he ate ever last one of them tots.

He was tired when he got home so I told him we would skip a bath, I got him ready for bed and was laying in bed waiting on him. Jeremy turned on the bathroom light, had the door 1/2 way opened and I looked to see what he was doing. This was the vision, Jeremy was laying on his tummy on the floor thumping through his magazine. Almost as if to say, Mom I was reading and you turned out the lights. It was so cute. When he got to the bed, as soon as his little head hit the pillow he was fast asleep. Since I had taken a nap I wasn't real sleepy so I laid in bed watching him sleep, his little precious cheek close to mine, listen to him breathing, staring at his cute little angel face and thanking GOD for this little precious boy of mine and how much I love him.

This morning the little doll was up bright & early. When it was time for Misty he kept looking out the bedroom window, I kept telling him she isn't here yet it's not time yet. I didn't see her pull up but he did, we came into the living room and he passed me, opening the door and I said no she isn't here yet and as I was opening up the blinds I could see her walking up. The little turkey seen her pull up.

Monday, July 26, 2010

Hello Monday....

I took off early Friday to get my hair trimmed and I needed to find a new fridge. I came home to a sleepy boy so we took a nap. We got up ordered pizza, relaxed as I started laundry. Jeremy got in the front seat of my car, put his seat belt around him and sit there on the way to Domino's like a big boy, the trip home was different because he was distracted by the pizza. We then played in his room for what seemed to be hours, he put his tent on his bed, put toys in, take toys out. I took a picture of him. He likes me to put him on my feet, lift him high, swing him around like he is going to fall off and he laughs so hard and it's contagious, we were both laughing so hard. It was so much fun.

We slept in Saturday morning and was able to take our time getting around. I walked Jeremy to respite, and then off I went to get my errands ran. I had to stop and pay for the fridge, headed to the KIA dealership it was time to get my car serviced, and then a stop at Target. I know after J's surgery he is going to be wearing a brace that will go well past his waist for approximately 6 weeks. The shorts with buttons or snaps would be uncomfortable, plus he really needed more summer shorts he has outgrown so many of his. I found these little sport shorts that have elastic in the waist, these make it easier for him to dress himself and use the potty, plus they are in style. I also found him 4 new muscle shirts. It is going to be hot, he wears an undershirt under the brace to prevent it from breaking down his skin, then the brace and a shirt on top so he is going to need cool. He outgrew his other little muscle shirts, these are bigger so he can dress himself. He can start school in these and look cute and possibly be able to wear them next summer. While buying groceries, Wal-mart had their swim trunks on clearance so he also got a new pair with Lightning McQueen. When I got home I showed him the trunks and said, "you want to go get wet at the park." He went into his room, took off his shorts, pull-ups so I handed him the swim diaper, and his trunks and off we went. When we got the splash pad, he didn't really want to get wet just wanted to run around so we played at the park for a bit.

Friday, July 23, 2010

Thank GOD today is Friday....

I really hate to rush the week along, think you should enjoy every day but we have just been tired all week, we have got back into a routine but THANK YOU GOD for the next 2 days off....

Yesterday was Mr. J's last day of ESY (Extended school year) so next week he will get to stay home with Misty and do whatever they want. Misty sent me a picture earlier and he sure seemed happy and content with his tent on his bed putting his toys in and out. We have a nice quiet weekend planned including get to sleep in late. I'm getting my hair trimmed at 3, then have to stop off at Tyler's to see if he has any refrigerators and then sure we can squeeze in a nap. J will go to respite tomorrow and I am taking my car over to the dealership to get it serviced. I'm considering going to target, they had some of their stretchy summer shorts on sale, J needs new shorts and these would be comfortable when he has to wear his brace. We will mellow out at home and then go to church on Sunday, I missed not going last Sunday. I might try taking J to Toy story 3 in Sand springs, it's only $2 so if he ends up not watching it not a big deal.

Tuesday, July 20, 2010

Our surgery in Columbia, MO

My mom is going with Jeremy and I for his surgery and will stay the entire duration.

We are leaving Thursday, August 5 bright and early at 7am. We have a 3:00pm appointment with Dr. Ramachardun, he wanted to meet Jeremy before the surgery. This will give us enough time if we need to stop and not rush. I have made reservations at the Ecno-lodge in Columbia, it's 5-10 minutes away from the hospital and that evening will take Jeremy to this place called, Going Bonkers. This is going to be the perfect place for J, he can burn up the stored energy from the travel plus he won't be doing this for a while after surgery. We have to be at the hospital on the 2nd floor at 5:30am on Friday, August 6. Jeremy's surgery is scheduled for 7am, but Dr. Dan normally doesn't start his part til 9am, they have to get everything ready for Dr. Dan. The surgery will take approximately 5hours.

I decided to go ahead and get a room at the Ronald McDonald House at 1001 E. Stadium Blvd, Columbia, MO. The RMH is right down the street from the hospital and it is a very easy walk. The hospital room that Jeremy will be in is small so there isn't much room to store clothes. I can keep my clothes, belongings at the RMH. This will give mom a nice, cool, quiet place that she can rest at night. There is also only 1 shower at the RM room on the 6th floor of the hospital. I can go back to the RMH have a private place to rest and shower. My plan is still to stay with Jeremy at the hospital most of the time.

Prayer Request: A safe trip to Columbia, Dr. Dan as he is our primary physician as he prepares to do 2 surgeries on Jeremy, Dr. Ramachardun as he prepares the anterior for surgery, Dr. Kuhns as he prepares to assist Dr. Dan with the spinal fusion, pray for all the nurses, physician therapist that are going to be dealing with Jeremy that they will be sharp, alert and do what is right for Jeremy, pray for Jeremy to stay healthy these next few weeks before surgery, for no paralysis, pray that Jeremy doesn't feel much pain, he remainds infection free, he can rest so he can heal, pray for my mom as she goes with us, pray for me that I can be peaceful, be there for Jeremy, rest so I won't be exhausted and tired.

Sunday, July 18, 2010

Our amazing mini-vacation

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.

Thursday, July 8, 2010

Dog lazy days of summer....

Jeremy and I have gotten in a habit of taking an occasional evening nap when I get home from work. Jeremy has really enjoyed playing ball this summer, he likes to throw it and make you go get it, roll it around.

My little boy has been so happy, he was a little tired on Tuesday but he was out of sync but I was also. It was an adjustment back into reality with a 3 day weekend, staying up late, the excitement, fun and of course sleeping in.

Jeremy has this routine he has developed. I will tell Jeremy about 10 til 7am that Misty (who is his HTS- Para from school) will be coming, so he runs into the living room lifts up the mini-blinds to look outside to see if her car is there, I come into the living room open the blinds so he can see outside and go start his breakfast. When he seems her pull up he normally runs and opens the door. It was so cute on Saturday he woke up at 8am goes into the living room and I could hear him lifting up the blinds and I had to remind him that Misty wouldn't be coming today, it was just him and mommy today. Wednesday, he woke up, his normal, happy, little self and I tell him Misty will be here soon, so there goes our routine. I am in the process of fixing his breakfast when I start hear him talking up a storm, laughing and he really had lot to say. I walk in the living room and he is running to open the door, he was letting Misty in.

A conversation between Jeremy and me last night, I was telling him about our upcoming vacation trip, how Aunt Angie, Brandi, mommy and him were going on vacation and do all sorts of really fun things. I asked him if he remembers Dr. Dan, how gentle he was and checked out his spine and we were going to see him, did he want to see Dr. Dan and this loud,"YEEEAAAA". I thought his first impression of Dr. Dan has been positive, a gentle physician who was so compassionate in checking his spine. I don't know how much J understands, but I think it's important for me to explain to him. I told him Dr. Dan was going to fix his spine, he would feel better but more importantly when he is asleep or afraid that mommy is going to be there right beside him. We are excited about our upcoming vacation, I am looking forward to some fun, the visiting and the overall of just getting out of town for 4 days. We are leaving Thursday about 10am, first destination Osage Beach, MO to spend the remainder of the day and night. We will do the Dino-space museum or Miner Mike's. We will get up Friday take our leisure drive to Columbia, MO for our 1pm pre-op, they will examine Jeremy, he will get measured for his brace by Mike (we've not met Mike yet) so it will be ready for J after surgery, then we will go do the hospital business, and if it works out Amber, social worker is going to give me a little tour so I can see the PICU, what the rooms are like, the children's floors it will give me a better vision of when we are there in August. We will then take the 3 hour drive to Branson, MO where we will stay 2 nights at Box Car Willie's. I don't know what we will do Saturday, I haven't decided if I'm going to take Jeremy to Silver Dollar City I guess we will just wait and see. We will get up Sunday to come back home.

Monday, July 5, 2010

Independence day 2010 !!!!!!!

We had an awesome holiday with family, good food and great fun. I truly know that true Independence comes from GOD and GOD alone. We had a great church service, then went to my sister's house who lives in Sand springs and they have a pool. We had all sort of appetizers and I really filled up on that but that didn't stop me from eating. We grilled hot dogs, chicken, corn on the cob, hamburgers with all sort of side dishes. I made a banana pudding, my sister made a blackberry cobbler and then later my brother and brother in law made some homemade vanilla ice cream. We played water volley-ball for what seemed to be hours and had such a GREAT, FUN time. Jeremy roamed did to infinity and beyond in roaming the earth, then he decided he wanted to play in the pool when there was only a few in there. My sister in law brought 4 of her nieces and they were so good with Jeremy, played with him and he loved it. Jeremy played in the water for about an hour, he was floating on the mats, playing with the ball. He went with my brother and brother in law and his cousins to pick out fireworks, although I'm sure he could have cared less just along for the ride. They shot all sorts of fireworks, they were pretty.

We got home about 11pm and was in bed by 11:30, we were exhausted. Jeremy got up this morning came into the kitchen got his can of pedisure came back to bed, drank it and fell back asleep until 11:30. We slowly started adjusting to the real world and it took us a while to get around. We got the house clean, all the laundry caught back up. I went to Toys R Us they were having a sale on backpacks so I got Jeremy's and his lunch box for school, then I treated myself to a spa pedicure...