Welcome to Coleson's blog. We've created it to keep friends and family updated on the journey we are about to embark on.. We appreciate your support and words of hope and encouragement during this time when it matters most.

Saturday, September 19, 2015

Wheels on the Bus....

For Peyton, the wheels on the bus going round and round are just another exciting part of her daily school routine.  She started Kindergarten this year and loves every bit of it, including her transportation home.  She is making lots of new friends and is very well behaved in school.  Each day she is so excited to share how many "Paw-sitives" she has to bring home or what level she clipped up to and if she got a blue or purple for her daily behavior rating.  I am so proud of her.  Despite the attention that we have to give Coleson and what our family has been through, she has turned out to be one of the biggest hearted big sisters and loves her family and friends very much.  She behaves and listens at school and always stands up for her friends or gives them a hug if they are having a bad day... and it's all genuine.  The other day I took the kids to Great Play for open gym and while Peyton is older than many of the kids she took 3 little 18mo girls (2 were twins) and started leading them to different play areas, picking them up if they fell down, asking them what toys they wanted, etc.  I can't believe my fearless little girl who would rather ride the scariest ride than play with dolls has also found her inner nurturer.  Couldn't be prouder.

For Coleson, on the other hand, the wheels on the bus have stopped going round and round (at least home from school, he still sings the song constantly).  After a couple weeks of school (second year pre-school) I thought he would enjoy riding the bus home 2 days/week.  He loves vehicles and buses and rode one last year as a day trip with his class and loved it.  Well, I don't think the first day went well as he was the first one on the bus the first day and didn't know what was going on.  It was scary for him and after 2 weeks of riding the bus home he started having some behavior issues at school, particularly those days he was going to ride the bus home.  So I canceled the bus and he has gone back to his usual happy self.  We'll try again next year maybe.  Otherwise I had his IEP review with the school and he is doing great.  Progressing in all areas with still some underdeveloped areas to focus on, but not major ones.   His teacher has seen a tremendous difference in his interaction with his peers and his openness to new things.  His class is smaller than last year and is more his age so I think this helps as well. 

After much hesitation, we decided to have tubes put back in his ears.  These are not the normal PE Tubes but T-Tubes which are a little bigger and are supposed to last longer.  I got a lot of feedback from the Hurler community and several Hurler kids have had multiple sets of PE Tubes, adenoids removed and other things to help the ears so I felt like we had to do it.  My contemplations for not wanting to do them was because there is a lot of opinion out there that they shouldn't swim with tubes and this is one of the best and most enjoyable things Coleson can do and does do almost daily.  The other is just for the mere fact that this was another procedure and another sedation and he is getting older and realizes what is about to happen which makes doing these things a lot harder.  So far, his emotional well being has stayed strong but with every poke, Dr. visit, surgery, etc. I just fear that he will start to get frustrated by his condition.  But I knew it was for the best so we arrive at 6:00am and were home by 9:00am and he was off and running once we got out of the car.  He is such a trooper.  Unfortunately, he won't be able to be "off and running" after his next surgery and that is when I fear he will start to realize the unfairness of his life. 

Speaking of unfair...his favorite place, Great Play, is closing next week.  He goes to Great Play 3x a week.  It is our version of "Physical Therapy" and the timing is perfect as Rachel can take him right after school 2 days a week and I take him on Saturdays.  He loves Buddy (the mascot) and looks forward to going every day.  It's how we get him excited to go to school on Monday and Wednesdays!   We held an early birthday party for him there last night just to get as much Buddy time in.  I do not know how to break the news to him.  Fortunately we will be heading off to Michigan the first week's it's closed and I hope that that helps the transition.  I can not find anything similar that works well with his school.  Other places have more morning classes when he's in school.  Anyone want to open a Great Play in the Tempe/Chandler area?  :)

The kids and I and Rachel made a last minute trip to Rocky Point with our friend Kim and her kids and nanny.  Paul was on a golf trip with his buddies and after several years of Kim inviting us, I happened to ask her what she was doing for the weekend and when she invited us to go, I did not have a good excuse not to, even Rachel could come with so I had help.  Coleson is healthy right now, and doesn't have any near term surgeries, appts. etc. so we went.  It was a nice getaway and the kids loved it.  Peyton was so excited when she got of the bus to learn we were packing up to go with her friends on a trip.