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Tuesday, March 17, 2015

Deseret News and Update!

In January the Utah Symphony and Opera hosted an event just for special needs kids and their families.  It was at the Capitol Theatre for about 45 minutes, and Chris and I went on a date with Carter there.  He originally sat in his wheelchair by us, then we moved him to a seat next to me.  He loved how it rocked and seemed to enjoy some of the music.  The rest of the time he kept spinning in his seat.  It was neat to go to an event where we didn't have to worry about how loud Carter was, because many kids there were doing the same.

The Opportunity Foundation of America: Eagle Eyes hosted a Wheels on Ice event at the Cottonwood Heights Recreation Center.  I was excited to go take Carter ice skating in his wheelchair because I know he likes speed and even better, it gave us some alone time.  We were joined by other Eagle Eyes workers, the mayor, Olympus High students that volunteer at several schools and other kids with their families.  I haven't been skating in forever and it was tiring, but Carter loved it.  He just wanted to go faster and faster.  He kept waving his arms and smiling.  The mayor Kelvyn Cullimore Jr. offered to help take turns going with Carter.  Several of the volunteer students knew Carter and introduced themselves.  It was nice to meet people that love and work with him too.  I noticed people taking pictures and as we'd signed a waiver already, Deseret News asked us after for our names and Carter's diagnosis.  Surprise, we were in the Deseret News paper on Sunday!  Here are some pictures from the event.  After it was over he literally cried for an hour straight, he was so sad to stop.

Another neat thing for Carter to participate in, is the Miracle League baseball at the Gene Fullmer Recreation Center in West Jordan, close to where we live, hosted by Angel Hands.  He will get to play with assistance, and I think it's awesome that there are things like this out there.  We haven't done this before, so I'm excited.  I also am trying to raise funds to help us put Carter back in horse therapy this summer when school is out.  Insurance doesn't cover it or respite, which ended in January anyway, and it is expensive.  We are starting to look for a house or condo, so lots of big changes coming our way.  We also have Disney Land in May to look forward to.  It's crazy how fast time goes.  Chris is busy working and going to school, working hard for us.  Sierra is potty training and doing pretty well.  We are also looking to get her into preschool this fall, and dance next spring.  She turns 3 next month! Keaton is 8 months old and sitting up, and getting six teeth.  Poor guy.  He's had a few sicknesses and ear infections, so hopefully his luck will get better here soon.  He is done with his helmet but needs Early Intervention because his gross motor is slightly behind.  He won't stand or bear weight on his feet, like Carter used to do, so we will do physical therapy twice a month at home.  While I was disappointed, I realized I at least have the experience to help him.

1p36 Deletion Syndrome & Awareness is having their annual conference in July in Florida.  We've never been able to go because of funds or having babies, and they are taking applications for a grant to go.  I hope we will be able to go with Carter and meet people.  We'll see.  We celebrated our 6th wedding anniversary in February, and I just recently cut a lot of my hair off.  It's nice to have a change.  On Feb 2 Chris lost his step grandpa and we attended his funeral in Idaho.  Carter has a 3rd loose tooth and molars coming in.  He is climbing stairs and onto couches and people, anything really.  He loves to swing or go outside.  He is doing so well walking with assistance, better than with his gait trainer in fact.  His school therapist is going to look at something different for him to use.  He got new daffo's (braces) and had a parent/teacher meeting.  Carter is making great progress in all his goals.  His teacher described him as such:  'loves to be the center of attention, a rebel.  Has to be reminded to not grab peer's hair.  He escapes at any opportunity.'  That's my boy.

Carter can find his name when given two choices in big font.  Carter can match ten objects with their picture, he will pat his play sign when he wants a toy but a lot of times will just go get it himself, he is better at taking turns and sharing, he is getting good at stacking and doing puzzles if you almost line the pieces for him, he is still working on using two hands to do an activity.  He is obviously doing great at scooting fast and walking if you help him.  I am so pleased with how he is doing.  I love hearing his teacher talk about him glowingly.  Life is almost always busy with three kids and daddy in school, but I'm trying my best to keep up:) and provide all the needs for my kids.  I am thankful for everything I have and for our health.  We got a new nephew last week named Colin, so that makes 11 grandkids on my side- 6 boys, 5 girls.  I love seeing families grow!