Tuesday, December 14, 2010

Update #123 from Linda and Rob

Hello! Hope this finds you all well and warm.

Thanks to this beautiful snow, we had no school yesterday or today. Yeah! A chance to organize a few things and get Christmas decorations up. We even got a tree on Sunday before the blizzard hit in full force. We were remembering last year, when we showed up at our usual tree farm to get our tree, and found a sign that said "closed for the season"! Much better this year!

Beth is coming home next week and we can't wait. She's been at Stanford since August, with one quick visit in October to celebrate my mom's birthday. We miss her lots, but are so excited to see where life is taking her!

I was just reading our post from a year ago, and it struck me how things change and how they stay the same. We talked about Steve's speech improving, and it continues to do that. Just very slowly and in certain environments, but better all the time. We play "Taboo" often and are amazed at how well he does with that game, and how something not designed for therapy is such good therapy! He makes attempts at talking on the phone now, which is challenging but good stuff.

A year ago he had a feeding tube and we talked about scheduling a swallow study. Well, as it turned out we've never done the study, but his doctor removed the tube in her office because she saw how ridiculous it was for him to still have it. Healing was tricky for many reasons, and it ended up taking much longer than expected. But it's a thing of the past now, and he has the scars to prove it!

He's doing much of the same therapy that he was a year ago, except that we've been able to add swimming since the tube is gone. I was thinking about all the therapies he does and the kindness that makes it possible for those to happen. I was also thinking about the people who are not officially therapists, but do things with Steve that help him. A teacher once told me that everyone is a teacher, and I am convinced that everyone is also a therapist! Every person at Willowbrook, where Steve goes for therapy twice each week, is a source of support and encouragement for Steve and our family. Jennie plays tennis with Steve every week, which is so good for his hand/eye coordination, strength, and posture, among other things. The owner of SportsClub of West Bloomfield lets us use the facility, so Steve is able to work out twice each week. The Farmington YMCA worked out a plan with us so that we can take him to their therapeutic pool at least once each week. Gail, Rob, and I swim with Steve and make up exercises as we go along. Eric and Theresa come to our house weekly to give Steve a massage and provide such good company for him. Lots of jokes get told during that time! Steve has friends who visit weekly, and include him in many of the things they do. Others text regularly, which is his best way to communicate in a "normal" way. One of Steve's good friends is going to start coming over one night each week to help get Steve on the eliptical and provide him with some laughs, we're sure! A good friend of ours is about to help us build a mat table, which we desperately need for stretching. The people where Steve horseback rides have become such good friends and sources of support to him, from his teacher to the office staff to the volunteers who walk along with him as he rides. All such blessings in our lives, as are every single one of you who reads this and keeps Steve in your thoughts.

We hope you know that you are always welcome in our home. Steve loves the company, as do we. Please feel free to visit, or we can put you to "work" if you'd like that!

We'd like to close this the same way we did a year ago, with a quote from a Christmas card we love:

"It's a time to slow down, let go, help those who need it, love them, too...and maybe that's the way we find our peace and joy. Not by taking on the whole world all at once, but just the part that fits in our hand."

As always, thanks for fitting Steve in your hand. Merry Christmas!

Love,
Linda and Rob

7 comments:

Anonymous said...

Thanks for the update. You are always in our thoughts and prayers. Merry Christmas!

Karolyn (Kira's mom)

Anonymous said...

Merry Christmas and Happy New Year to everyone who continues to read Steve's blog and show their support. It is appreciated more than you know. Swimming with Steve has been great for both him and me. Love seeing him run in the water. He continues to amaze me. Never complains, always willing to try anything and one of the most determined people I've ever seen (that includes his mom and dad too). When I'm having a rotten day, all I have to do is think of Steve and what he has gone thru and continues to go thru. Sure puts things in perspective. Onward....
Love, Aunt Gail

Linda said...

Hi! This is Linda and I just wanted to add a couple things...on Tuesday I was able to go with Steve to therapy at Willowbrook. He held the handrail with his right hand, I supported his left arm (part of the time) and Celia walked behind him nudging his feet along if he slowed down. He walked two laps of the building in that way, which is a long way. He was barely tired when we finished, and went on to do some work with the parallel bars after that. Last night Steve's friend Mike came over and, with Beth's help, we got Steve on the eliptical where he pretty much kept things moving for eight minutes at a good pace. So much better than a week ago! Yeah! Our good friend, Steve, who we thought was going to help us make the mat table actually made it himself and it is a wonderful thing. Steve just loves to lay on it - back, side, stomach and move himself around...says it feels amazing to be able to finally do that. Three great things that happened during the past few days! Thanks everyone! Merry Christmas!

Anonymous said...

Great job Steve, your progress over the last year is wonderful. I pray for you all the time and will continue. People prayed for my son when he was in a fight with cancer and I know it helped.
Happy New Year and God Bless.

Anonymous said...

I think of Steve often, even though we have never met him...He was a "friend of a friend"......You know how that goes!!
We have his blog "saved" on our computer under favorites.. Prayers for another blessed year of improvement...Sounds like things are going great!!

Anonymous said...

On Feb 17th we thought of Steve, as always, but that day marked three years into recovery. Although we are distant by miles, we are "there" through updates from family and friends. When you speak to Linda, or Rob, or Grams or Aunt Gail, or hear and read of posts by his closest friends the one factor that remains constant is a young man’s unwavering dedication to his recovery. How many of us have maintained a level of dedication to a single focus for 1,095 straight days (26,280 hours) and never once strayed from the job at hand. 1,095 days ago we all marveled at Steve's strength and we all commented on his inspiration. Steve, today, and possibly even more than in the past, we are proud to call you family.

Uncle Rick, Aunt Cheryl, Alyssa, Alexis and Ryan

Anonymous said...

HAPPY BIRTHDAY STEVE!!!
Love you, Aunt Gail and Uncle Don