Cool dude...at the luau

J is working on the last 3 days of the 4th grade and I think he is ready for the break, he has been pretty tired the last days. Today they had a luau, he wore his glasses but I didn't have any cool Hawaiian shirts but he is still adorable, they said he was dancing and having a great time.


I had his birthday party last weekend (soon as I find the USB cord I can download pics) and I know his birthday is in August but the thought was his friends never get to come and he will be recovering from his first spine surgery this year on his birthday. I took Jeremy to Wal-mart, Sunday after church we cruised the birthday isle and I told him to pick out something and he picked out Toy Story, no toy left behind which is not suprising he loves Woody and still carries around his little woody doll. On an AWESOME note I was so excited that a friend of Jeremy's came, she was excited to be there and told her mom, "I can't miss Jeremy's birthday party, I have to go" She helps Jeremy at school, sits with him at lunch. I was excited that this girl was there because of who Jeremy was, she isn't a cousin, she isn't one of my friends children, staff person but again a little girl who likes Jeremy because she at an early age has seen he is a person...

Mr. Comedian

Jeremy's para said this morning he was being a comedian, he woke up in an awesome mood and was having a good morning. They were walking down to the classroom with his friends and her daughters. Jeremy started performing for them, he was laughing and talking, they were laughing so of course that just gave him what he wanted. He was singing and dancing with a bucket on his head. He is getting quit the little flirt with the little girls.

Happy Mother's Day 2010 !!!!!!!!

This afternoon I took a couple of hours of vacation to get some highlights in my hair, buy a birthday gift for my niece's birthday party and a trip over to the Pediatrician's office to pick up J's ADHD medicine. When I got home had time to throw a load of clothes into the washer and the bus arrived, they told me there was some breakable things in his bag. I started going through J's backpack to see what he made me, there was a cute laminated picture of him, a flower made out of a sponge, card and a potted flower. I read the card, the inside read, "happy mother's day I love you, Jeremy. I knew Jeremy didn't write that, I also know that even though he is non-verbal that he does love me. The outside of the card read, "your gift was from Jeremy. He learned how to plant flowers from a master gardener. He did all the planting himself using a picture schedule with a little assistance." So, with tears rolling down my face, it wasn't the thought that Jeremy even made it for me but it was that he did that on his own using a picture schedule. He has had a great year, with lots of progress but I've seen so much maturity.

We will get up tomorrow and then do something we've not done in years, Jeremy and I will go buy groceries. He does ok sometimes but it gets difficult when it comes time to check out. Sunday we will go to church and then go out to my mom's to celebrate mother's day....

Nuttin new in our world....

There is not much new going on in our world. J makes slow steady progress. His last day of school is May 28. He will do Extended school year from June 22 to July 22, Tuesday, Wednesday and Thursday from 8:30am to 11:30pm. Then they normally have a 2 week camp for children with autism, although Jeremy is not diagnosed with autism along with his FG syndrome comes the tendencies. I was excited that his Para-professional at school wants to be his HTS over the summer, so we will have someone who knows Jeremy, knows how to work with him so that will be a relief. We are so enjoy the nice Okie land weather, it's been a nice, spring, J loves playing outside.....

Surgery plans and dates...

I have been at a disadvantage trying to get all the details about the surgery and recovery over emails. We could have made an appointment and went down to see Dr. Dan for a face to face appointment but that would be another trip to Columbia, MO. Holly, his medical assistant has been totally AWESOME to get with Dr. Dan and get all my questions answered. I believe at this point, I'm good, have all my questions answered and understand the plan.

When we go down on July 16, we have a 1pm Pre-op appt. We will do another X-ray, Mike will measure Jeremy for his brace, we will see the Nurse Practitioner who will do a work up and then Dr. Dan wants to see Jeremy. We will go down the hall and take care of the hospital side of the surgery @ 2:15pm.

We are going down on August 5 and will meet Dr. Ramachandran for a 3pm appointment, he will assist Dr. Dan with his anterior surgery, he wanted to meet us before surgery. Jeremy’s first surgery, August 6 is for the kyphosis and to straighten the spine. Jeremy will have a halo and be in traction, I have seen pictures and they do attach the halo to the skull but this is to prevent Jeremy from moving and keep the spine straight. Jeremy will be in PICU pretty much sedated and will not be up moving around between the first and second surgery.

Jeremy’s second surgery on August 13 is to fuse the spine, Dr. Kuhns will assist Dr. Dan with this surgery. This will be a total fusion so he will not grow in the torso after this surgery. He will be put in his back brace be on pain medicine and about the 3rd to 4th day they will start getting him up and moving around. I have visited with numerous families and the first several days are very painful and they are on morphine pain medicine but then around the 3rd day most are ready to start getting up. The PT will get Jeremy up and moving around before we come home so that I will know what to expect. Jeremy will not go home on high dose levels of pain medicine and will not be on nursing level of care. I am estimating if all goes well we will be home before the weekend of August 21. J’s school starts around the 19th but I plan to keep him home and give him the time to recover and he will start school after Labor day. He will have some restrictions of no jumping and lifting none of which Jeremy really does, he does do his occasional look at me little mini-jump that is so darn cute. I have talked to families who have typical children who have had the surgery and they can voice their discomfort and pain, these are children who play basketball, football, cheerleaders and they do fine.

We will then follow up with Dr. Dan in 6 weeks after surgery, and then we will continue to follow-up with Dr. Dan as he tells us to.

The Seasons....Easter !!!!!!!

I realize that every season has a purpose but if I was to rate the seasons in my life it would be: 1st Spring, 2nd Fall, 3rd Summer & 4th Winter. I think spring is my all time favorite season for many reasons. I love when everything starts to bloom, re-grow, birds are singing, the flowers are colorful, trees blooming, grass is green, days are longer and temps are just perfect. Spring also ushers out my least favorite season, winter. I am the type of person that could live without cooler temps, snow & ice and a little bit of that goes along way with me. I think one of my favorite things of spring is the Easter holiday. I love going shopping to buy Jeremy an Easter basket, plastic eggs to stuff with candy, a new dress shirt. It's also the big family dinner and our first real get together since the Christmas season. I know what Easter represents, my savior was mocked, placed on a cross and suffered a horrid death that I can't imagine for my very sins and they put him in a tomb but on that 3rd day he AROSE, and because he lives I live.

The 3rd chapter of Ecclesiates verse 1 comes to mind. "There is an appointed time for everything. And there is a time for every event under heaven". I know just like the seasons come and go, colors bloom, things grow, things pass away, life happens, life changes and we keep on rolling, we grow as a person and we live life and serve our GOD.

Spring break 2010 !!!!!!!!!

Jeremy's spring break started Friday, March 12, for the 1st part of the week I worked so Jeremy stayed around the house with the HTS. Wednesday was my first day of vacation so we slept in until 9am, it was so nice not to wake up to an alarm clock. We spent the day around the house, playing and getting ready for 2 day mini-vacation. We had some OU nursing students who picked Jeremy as a project so we visited with them for several hours. We got up Thursday morning, packed the vehicle and headed to the Oklahoma City Zoo with my sister & neice. We met my Aunt Betty, her daughter Donna, her 2 daughters and grandchildren and had a great time spending the day at the zoo. It was such a nice day to be out, good company and enjoying God's creations. We then went to spend the night in Moore, OK. We went out to eat dinner at a Western Sizzlin close to the motel. I was starving but of course it being a buffet I ate way too much and like always Jeremy ate nothing. I told the lady he was 3, she looked at me like I was crazy but I knew he wasn't going to even eat $3.99 worth of food. We got up Friday morning and headed to Arbuckle Wilderness where we were going to meet 2 families from Texas who have son's diagnosed with FG syndrome. We have been trying to plan something for years and it never worked out. I was excited to finally meet the people in person, as well as their son's. We went through the drive through safari which is always pretty awesome, other than Jeremy could have cared less but Miranda enjoyed it. We were visiting the rhinos who were enjoying a chance to be out in the sun and were sunbathing when Jeremy laid on the horn & startled the rhino's. I didn't think they could move that quickly, and really wish I had my camera set on video it would have been cute. We went over to park, had lunch, see some snakes, goats took some pictures. We got to pet a couple of camels, who were actually wanting to just nibble on anything that got close and one was growling. I bought tickets for Miranda and Jeremy to play on the moon walk, which I knew Jeremy would love. I purchased a ticket for Miranda and I to ride double on the go-karts, which we stood in line for an hour. The Arbuckle Wilderness was really busy but it was such a super nice day. We left about 5 to come back home everyone being exhausted, but I had to make a stop at the Arbuckle fried pies. This place was featured on Discover Oklahoma, but personal experience I've stopped there each time we are there. I got J and I 2- chocolate & 2 coconut, which was my dinner on the way home and Jeremy's when we got home.

It was a nice mini-vacation & 2 of the nicest days we've had so far this year and able to enjoy the company of family, and GOD's creation.....