Saturday, December 26, 2009

Another Christmas Holiday

For everyone who wanted a White Christmas if you were here in "Okie" land you got one. I wasn't one of them, I had plans and don't like them to be disrupted which included being around my family. I only have to travel to Kellyville which is about 25 minutes to my parents house but wasn't sure if we would be going. We got up Christmas morning to an awesome, bright shining sun. I took a little test drive around town in my new car to see how it handled this stuff, it was easier to navigate, stop and go then my smaller car was. Jeremy was buckled in and off we went. The only trouble I had was a hill by my parents, you have to go down a hill and then up another hill so there was no time to build up speed but the car dug in and up the hill we went. We came home before it got dark, didn't want to drive home in the dark. My mom started a tradition a few years back, where she bakes a ham and we all bring snack foods and we munch, my dad makes taboli, not the traditional Christmas dinner but we all like the freedom of not having to cook. We ate, the kids exchanged gifts, ate, we played dirty Santa, ate, set around and played with kids toys, ate, visited, ate and then ate more. I think all I did was eat. Jeremy got a tonka set, granny got him some new PJ's I put on him last night and he looked so grown up. I watched him last night for about 15 minutes play with his little firetruck, just like a little boy does. I was going to buy Jeremy a new doll, he loves to play with them, take care of them but he's outgrown them and is now starting to play with his little trucks he has, oh and his new tent and tunnel. I got up this morning, purchased us a new 7 ft. pre-lit Christmas tree, that way if Jeremy takes off all the ornaments it would still look pretty. I also got decorations for the outside, which included a 6 ft inflatable snowman, 4 ft inflatable bear, some star and candy cane icicle lights, a door decorations, and some pathway snowmen lights. We haven't decorated the outside, but Jeremy is getting older and think he might enjoy it. I took down the tree and all the decorations today and boxed them up and put back in storage.

I also found out that on Wed we go see the new physician in Columbia, MO on Thursday, January 28 to get his opinion, find out what his plans are.

I am off until Monday, January 4, it's suppose to be cold and rainy so not sure what we will do but I can find something inside for Jeremy to do.

Thursday, December 24, 2009

Merry "CHRIST" mas !!!!!

I wanted to take this time to wish you all the Very Merriest “CHRIST”mas and hopes for a blessed New year. In the past, Jeremy will continue to mess with the tree until there are no ornaments but this year he's pretty much left it alone. This year I started putting one present at a time under the tree, but yesterday I got them all wrapped and put them under the tree. The discovery continued and he started to put at least one rip in each package.

2009 brought many new blessings to my life, new growth, many new friends, continued friendships, reunited with my “bestie” from High school but it also brought on new struggles, some I wasn’t expecting, some that are on-going. The one that I’m still struggling with is the fact that Jeremy’s scoliosis rapidly progressed and started to rotate inward, so we can no longer take the wait approach we have to act and we are in that process now. These words sent me back to the land I’ve visited many of time in Jeremy’s life, of “why” “why me” “why Jeremy” “this wasn’t in my plan” “this wasn’t supposed to happen” “hasn’t he went through enough”. I was reminded of a song that a friend sent me when Jeremy was first born and I was struggling with the storm in my life, “Sometimes he Calms the storm”, by Scott Krippayne. He can calm the storm, I know he can, he doesn’t have to, he doesn’t always chose to do so which is in my case, but he’s calming the child. Growth is hard and it often hurts. If you don’t know the song I have it posted it on my face book or you can go to YouTube and search it.

Sunday, December 20, 2009

Holiday season....

Jeremy has been increasing his vocabulary, he's been saying, "I want that" I want to see that" "I want snick snack" and even last week Stacie our SLP got him to say, "OK". We are going on the 3rd week of having Barb, an OT come to the house. Barb is working on some sensory, vision therapy to help Jeremy. Stacie and Barb work together to get the most out of Jeremy, it's been an awesome 3 weeks. I was looking over some of his past pictures of the 1st 3 years of his life and with what they first told us Jeremy would do and what Jeremy is doing. It goes back to my vision, that one day Jeremy will say, "this is what they said I would do but this is what GOD did for me". I can not believe that he's 1/2 way through his 4th grade school year.

Friday was our last visit with our 3 OU students, we of course had another great group, they were awesome, eager to learn about Jeremy and what life is like. They come to the child's home, to learn about the child, family life & what the family goes through. They then try to visit the child outside the home in the community. Then they are required to research the child, which is always interesting to me since there is not a great deal out there on FG syndrome. Their final project is to come up with a plan. I'm all about new eyes on Jeremy, I think the more brains we can have will only make his life better. I want Jeremy to thrive at school, his community and when he gets older my goal is for Jeremy to contribute to society in what way he can. That is going to require he makes friends, be able to make friend with his typical developing peers, a major goal I've had for him many years. The students came up with some really neat ideas. Jeremy doesn't really interact with his peers and we've got to work on that and change it. He can interact with adults but it's because that is what he's been around most all his life, his therapy is play and who does his therapy, adults. The school has him a peer buddy, but after the 1st of the year I'm going to work with the school to see how we can build on this, get Jeremy to interact with his peers. The students came up with a little story you can laminate and read to Jeremy, about saying "hi", "bye" and "sharing". I haven't got to sit and read the report word for word, but will as well will be brainstorming ways to get Jeremy to interact with peers.

Jeremy is out of school until Tuesday, January 5. I have to work 3 days this week and then I'm on vacation until Monday, January 4. This is the 1st time in many years I didn't schedule one appointment for Jeremy. I normally am trying to make sure we get all his appointments caught up so we end up doing nothing but run the whole time. This will be Jeremy & mom time, we will sleep in, depending on weather may go to the zoo. I'm excited about Christmas, got a late start on shopping but got it all done, almost all wrapped, Christmas eve Jeremy and I are going to decorate a gingerbread house instead of cookies. I'm of course excited about Christmas day, spending time out with my family, we always have a great time, visiting, grazing. Then the day after Christmas I'm going shopping for a new Christmas tree & some decorations.

Here is a picture of Jeremy from school helping to decorate their gingerbread house....