Might as well Jump... the Jumping Jeremy act !!!!

I went to Wal-mart yesterday to pick up Jeremy's prescription and they had their singing animal valentines for $4 so I knew Jeremy would love one. I totally underestimated just how much he was going to love it, totally underestimated. The OU students were scheduled to come by and do another field observation and I was in the process blowing up balloons for Jeremy, which Jeremy was having so much fun with the balloons. Jeremy remembered all the students and of course had their undivided attention so he was in heaven w/ playmates. When he got home from school Jeremy kept jumping so I made a big deal of out and told him how proud I was of him so he was very proud and kept doing it. I added the singing Valentine dog to the ensemble and he was really getting into a groove and jumping all over the place. The GOOD news is I did actually finally get it on video. I didn't have lot of lights on so it's on the dark side but you can see Jeremy jump, his singing dog is in the stroller which is where he wanted him, you can see that because he has a glowing red heart...

The Device arrived...

Our assistive tech device arrived on Thursday, we have it in hand and it went to school today. Stacie our SLP will be at the house today and we will do some working on it. I'll post more to come...

A blast from my past...

I am such a sentimental person, love old pictures of my family and family traditions. This picture was taken back in 1969, with my Papa and Mama somewhere in Arkansas which is where my grandparents and most my cousins lived. This is my mom's parents who both have passed away. I have fond memories of going to their house during the summer for a visit, getting to play with my cousins and being around my grandparents. My aunt sent this picture she had scanned and I printed it off and put it in a picture frame for mom for Christmas. This is my Papa Smothers who is holding my baby brother, James. Mama Smothers is holding my cousin Tommy. The little girl who has her face hidden by Papa is my oldest sister Angie and I'm the little blond head girl that is looking at her holding a suitcase. My cousin Lynn is the boy next to me, my cousin Tammy is next to him. My cousin Connie is holding my younger sister Jean, then my cousin Donna, and my cousin Jimmy holding my cousin Rita. If you can believe it there are many more cousins who weren't born yet. One of which is my youngest sister Evelyn so I told her this is the "A" team of grandchildren. I want the same thing for Jeremy. I am truly blessed with my family, we all live fairly close to each other, and do things together all the time. My parents still live out by Lake Heyburn in Kellyville in the exact same house that I started 1st grade in. It's a blessing and Jeremy is getting to grow up in a close relationship with his one set of grandparents, his 10 cousins and aunts and uncles.

Exciting times ahead...

Well after 9 months of jumping through many different hoops we got everything approved and in place, Jeremy's Augmentative device is being shipped to him today. This is a device where he pushes a button and it speaks for him. I am estimating that possibly by the end of this week or early next week it should be in our hands. I posted a picture on Jeremy's blog earlier this past year of him using one, where he would request a drink or snack. This device will help Jeremy communicate what his needs and wants are, and in the process Jeremy will hear the same words/commands over and over. I am so excited about this new venture in our lives and can not wait to see what progress Jeremy makes in his speech.
We had an awesome weekend with our weather and it looks to continue into the middle of this week. Saturday Jeremy just played and played and didn't want to come in. On, Sunday we celebrated my dad's birthday by having a dinner, and of course our famous kickball game. It was good exercise for me and I could feel the work out. When we got home around 5, Jeremy ran outside with his doll and put her up in the fort so later that evening of course he had to go get her so that required an outside visit. He won't have Speech therapy this evening so he can play outside.

Lesson in Genetics

Since Jeremy was born Genetics fascinate me to no end, I love to research and find out all the information I can and grab hold to all literature pertaining to what Jeremy deals with. I had posted earlier in the year when we found out about our L1CAM gene. Jeremy has a variant of unknown significance on the L1CAM gene and after further testing it was shown that I have the same variant on my L1CAM gene, so he did inherit that variant from me. Does this play a part in what Jeremy deals with? The conditions that normally go along with a mutation on the L1CAM gene is X-linked hydrocephalus and X-linked agenesis of the corpus callosum, in which Jeremy has both. There are also two other conditions known as CRASH syndrome, MASA syndrome associated, however they do not include the congenital heart defects. There is a chance this is just a normal variant that I have and it doesn't play any part in Jeremy's clinical picture. The diagnoses of FG syndrome is remaining intact due to Jeremy's clinical findings. There might be someone in years to come who might decide to study the L1CAM gene in more dept, new information could emerge from that only time will tell. I also reamin to the fact that Jeremy is clinically FG syndrome, Dr. John Optiz the founder diagnosed him with it almost 4 years ago.

We had our appointment yesterday evening with the PT students from Oklahoma University. I told Jeremy, you are going to have someone come to see you, he looks around and went back to what he was doing. When they pulled up I told Jeremy your visitors are here so he jumps up and runs out the door only to see the 3 students, 1 girl and 2 boys get out of the car, so he played shy. I think he thought it was going to be Stacie or Matt, who are the only ones that come to the house other than the HTS who come to keep him when I leave. I don't know if he thought I was going to leave but he stood his ground or he thought they would make him work. It took a little while and Jeremy started to interact with them. They asked questions about Jeremy, viewed his current school IEP and of course it doesn't matter who you are or what you actually come to our house for because Jeremy assumes you are there and he has your undivided attention. The students were great and played with him, he had a blast. We will do about 4 more visits over a course of time. They will write up a plan and they will also research his condition so I'm excited to see what they come up with on FG syndrome.

We are thawing and is spring almost here....

The groundhog saw his shadow on Monday so that means 6 more week of winter, and the first part of the week it has been somewhat chilly. That ends today when it is suppose to hit the 60's and keep warming up from there at least until next Wednesday. We just enjoy what we got while we have it and this means some really nice outdoor days for Jeremy which is always a plus for him.

Jeremy had an appt w/ Dr. Cyrus our Pediatrician yesterday for our medicine re-check and HE GAINED A WHOLE ENTIRE POUND since December. It was funny because Monday evening Jeremy actually finished an entire container of cream cheese, it was the fruit dip kind that has strawberry & yogurt so it was light, but last night he polished off the honey nut cream cheese, so go figure. I've been on a "strict" diet since January 19 and have lost 12 pds and 5.75 inches and I can only eat fat free foods, but I purchased the cream cheese for my OFN training on Saturday so when it all didn't get ate I brought it home so it was win-win, it helped Jeremy and it helps me get rid of that temptation. Jeremy is working really well for Stacie the SLP, and we are starting a plan to get him more inclusive into the typical 3rd grade classroom. Matt our behavior teacher went with us to the appointment and then came over yesterday evening and Jeremy showed him some of his new help skills he has been working on.

This evening we have 3 Oklahoma State University, OT/PT students which is part of their curriculum to do some family centered work. They will get to know Jeremy, his diagnose, they will watch him in several different settings and then get a plan put together for him. It's good for the students and Jeremy is a really good case study. We did this several years ago but have backed out for many years but we are going to do what we can to help.

I should be able to get some good pictures and or video this weekend with it being so nice and spring like. I've got Sibshops on Saturday from 10:30 to 1:30pm and then on Sunday after church we are celebrating my dad's birthday at my parents with all my siblings. I'm sure there will be a game of something involved in this, most likely our famous kickball game and since I've been on this diet and loosing weight I'm getting more energy and feel like playing. On father's day Jeremy actually initiated play w/ his cousins so I'm thinking he will probably play a little more with me out there.