Tuesday, June 11, 2013

High Five!

Today is Ian's 5th birthday, and I haven't seen him in about five hours. Today also happens to be his second to last day of school, so instead of going off and doing something fun with me, his dad, and sister, he's at school and I am at home, doing normal things like grocery shopping and hanging out laundry. This is the first birthday that I haven't spent with him, and it's a little hard for me. I know he's having fun though - getting to be the birthday boy at school is just the kind of thing he loves. 

Last year around his 4th birthday, I wrote a post about what I was looking forward to for him in the next year. Looking back at it now, I'm quite happy that many of the things I was hoping for - continence, more speech, a bit of weight gain - have come to fruition. It's been a good year, and I'm hopeful that 5 will be even better!

Happy Birthday, Ian!









Monday, June 3, 2013

A Break in the Clouds

It's been a while, I know. 

Honestly, I haven't been in a great place the past month or so. A lot of discouraging things have been happening, and I was letting those things take over my mind and get me down. I gave myself over to my anger, sadness, and disappointment, which made day to day living a bit challenging, much less writing about it. 

But enough about what hasn't been going our way. 

I'm writing today because something awesome happened. It came at the perfect time to lift my spirits and turn my feelings of disappointment into happiness and excitement. Finally, something I wanted to share.

A few months ago, we got a letter from the county saying our family was on the list to receive a grant through the Family Support Program this year. We'd been on the waiting list for a few years, and our number had finally come up. In mid-April we had a home visit with our case manager to discuss Ian's needs, as well as what the grant could cover. Justin and I had narrowed our list down to a ramp for our front door, specialty therapy (such as music or hydro therapy), or a new, bigger dynamic mobile stander - all of which are not covered by our private insurance or Ian's state medicaid. We decided that night that the mobile stander would be the most useful to Ian, and would give us the most bang for the buck - we'd had the previous stander on loan for three and a half years before Ian grew out of it.

Ian's first standing experience at 15 months old.

At the beginning of May, I submitted the paperwork requesting the Rifton Dynamic Stander we wanted, as well as the documentation from Ian's physical therapist outlining why this particular equipment was beneficial to him. I figured that the approval process would take most of the summer, if not all of it, but by the last week of May our Family Support Program case manager called and said our request had been approved and the stander could be ordered! It was almost too good to be true! 

Today, when the kids and I arrived home from Ian's OT appointment, there was a huge box sitting on our front step. I'm not sure how, but somehow I dragged it into the house.


I opened the box, expecting to see a pile of parts that would need to be put together.

Nope! It was fully assembled!

Ian had picked the color - green, of course - so I excitedly told him his new, green stander was here. I took it out of the box and asked him if he wanted to try it out. 

"No" he said.

So, we ate lunch and got ready for PM 4K. After that, I couldn't wait any longer. I had to see him in that new stander!

I strapped him into it, and on the lowest setting he just fit - exactly like when we'd gotten the first stander. His chin was resting right on the top of the chest pad.


Strapped in from the back.
Once he was in it, he took right to it, and started wheeling around the living room. We were almost late to school because he didn't want to get out! 

Now we can finally return the too small stander to Katy's Kloset, which has been loaning it to us for over three and a half years. It makes me happy to think that another little kid will be able to use and benefit from it the way Ian did. The dynamic stander gave him his first taste of mobility - it changed his life. When Ian outgrows this new dynamic stander - hopefully many, many years from now - we will be happily donating it to Katy's Kloset.

Today was a good day when I needed one.