Hollywood, Here She Comes. Katy Stars as “the Bat” (and other posts from late 2008)

November 16, 2008


Wow… November 16… not quite sure how we missed posting a single thing in October.
So what’s been going on? Final permits have been obtained for the addition and renovation (finally) and we’re almost finished getting everything lined up to begin. Shel and I aren’t sure whether we’ll have enough money to complete everything in the current economy; but we’re continuing to work hard to get as many people on board as we can. Either way the long, long process of getting this project started is almost completed. Hopefully, that means we’re nearing the beginning of the end.
Katy (there’s no other word for this) LOVES school. (Thank God.) Here teachers have given her a simple communication device that involves her simply pressing a green button. When she presses it, a series of recordings communicate for her. For instance, one week, Katy’s job was to greet everyone in her class when they walked through the door. So, Katy would press her big green button and her teacher’s voice would say “Hi!” She pressed it again and would say, “Would you like a handshake?” Another press: “A thumbs up?” Or finally, “A high five?” Considering nearly all of her little classmates are boys, high fives became the greeting of choice and for a couple weeks there, that’s all Katy wanted to do for any of us.
It’s simply amazing for me to see how big she’s grown. We received her first class pictures this week from school. Is that really our little girl? For Halloween, Katy’s class put on a play to go with the children’s story, “The Big Pumpkin.” Katy was the star of the show, the small but smart bat that saves the day. It was incredible for me, as her daddy, to see her up there in front of everyone flapping her arms as the bat, giggling and laughing. She was just enjoying herself like any little kid. It may be impossible to explain to parents who don’t have to deal with issues like we do; but seeing her up there like that broke my heart and uplifted it to new heights all in the same beat. A glimpse of what we have lost and gained all at once. (Welcome to Holland…)
I know it’s kind of long, but here’s the video:
(up soon,  I promise)
As we head into the holiday season, and the end of the semester for the kids, we’re happy to report our two high school boys, Timmy and Sean were both Honor Roll students for the first quarter at DeSmet. Timmy is in full preparation mode for lacrosse season next spring, training with his coach after school. Sean just completed his first season on the soccer team and is nearing the end of try-outs for the basketball team. We’ve got our fingers crossed… Maggie has begun babysitting for Katy to give Shel and I a night off every once in a while. Where in the past, our only option was Nana, now there is another way to allow us to relax! Bryan started taekwondo last month with his cousin Jason and has really taken to it. It’s exciting to see him so enthusiastic about something that has the possibility of really teaching him some valuable lessons about discipline and give him a workout at the same time.
Well, we’ll try to update this more frequently as construction begins. No promises, though!


Our last post lamented how it was September already. Now the month is almost gone…
So, what’s been going on? Plans continue to move forward with Katy’s addition. Tonight is our first official meeting with our project manager, William Hecht. He’ll be in charge of keeping everything moving. Out of everyone we talked to, he seemed to really understand how to control all of the different aspects of this build. We’re extremely excited to get this going, and absolutely scared to death on how this will all come together.
For the most part, Katy has now adjusted to her school schedule, and with the exception of physical therapy, seems to love it. (Amanda, her long-time physical therapist, is laughing as she reads this. Thankfully, Amanda is still working with her on Wednesdays for aquatherapy – the only type of PT she enjoys.)
How’s the rest of the family doing, you ask? Very well, actually. Timmy started working at Dierbergs last week and his physical therapy on his ankle started, as well. He’s begun training with his lacrosse coach for the spring season and seems to be truly excited about it. Sean is starring for the DeSmet top freshmen soccer team. He’s taken control of the midfield for the team. Both Timmy and Sean are also maintaining excellent grades, as well. Maggie and Bryan, our two hold-outs at St Gerard continue to entertain us at all times of the day. Maggie is playing soccer during the fall while developing her social skills at an unprecedented level during the school day. Bryan (and his cohort Jason – his cousin) went to an air show this past weekend and marveled at the F-15 and F-18 in demo flights. (Maybe he’ll live out Todd’s teenage dream…)
And finally, 9/22 was Hope’s 9-month birthday. She’s still most definitely a puppy, but she has become a fairly well-behaved puppy at that. She continues to have lessons every Monday night and while not flawless, she has definitely impressed the instructors over the last month. And most importantly, Katy adores her.
Is it really September already?
Well, Katy has her good days and her bad days at school. Some days she loves it. Some days she just wants to get the heck home. Today evidently was her best day yet. So, we’ll just keep hoping for more good days.
This past week, we found out another family with a genetic disorder in St. Louis has the Extreme Makeover: Home Edition crew in town to make all their house dreams come true. They have twins with deletions on chromosome 9. So we went down to the construction site this weekend to watch it all come together. Katy ended up with her wheelchair autographed and a signed hard hat. She actually became quite the little celebrity among the service personnel. Doubt you’ll see her on TV, but she had a lot of people fawning over her.
All of this weekend’s construction has only served as a reminder to what we have coming up in the next few months for ourselves… Slowly but surely, we’re making our way towards getting Katy’s addition in motion. Nothing like the stress of figuring out how all of this will come together along with everything else going on in our lives.
Hopefully, Katy goes back into Shriner’s this week to get new braces for her legs. She’s just growing too fast at this point for her to fit into anything for too long. (And thank GOD for Shriners. Do you realize that EACH of Katy’s leg braces actually cost $600. Again, thank GOD Shriner’s does everything for free. Too bad they don’t do housing additions.)
We’ll try to get these updates out more frequently in the future. You know, just as soon as we get some free time.

THURSDAY, AUGUST 28, 2008 11:57 AM, CDT

What a past couple of weeks…
Katy suffered for about nine days of hay fever until some new allergy medicine seems to have gotten it under control. During that time, she slept through the night only once and was so tired during the day that her initial good experience at school came crashing down on us by Wednesday.
Today, though (Thursday), she seemed to be back in a good mood for her teachers. Let’s just hope it stays that way. Everyone involved believes Katy is suffering from separation anxiety. I don’t believe that means just Shel and I (or Nana or Papa or all of the kids). I think she’s also missing her therapists that she has had for two years now: Alecia, Sue, Amanda and Julie. I just hope she can eventually have the same type of experience with her new teachers as she had with them. They truly have had a huge impact on our little girl.
What else is going on… the school year is now in full session for the rest of our crew. Timmy had an MRI done on his ankle yesterday to see if we can find an answer to the continuing problems he’s been having since his injury in April. Sean made the top freshman soccer squad at DeSmet and is being introduced to the increased work load of high school all at the same time. Maggie is still her non-stop-talking, life-loving, giggly self. And Bryan’s helping me out with Hope’s training as much as possible. In all honesty, that means he loves to zoom around the classroom in the class wheelchair at Support Dogs. But he is helping, so I won’t complain.
Thanks for checking in!

MONDAY, AUGUST 18, 2008 8:01 AM, CDT

It seems impossible that almost a week has gone by since we updated the journal… So what’s been happening?
Katy started school this past Thursday, a source of unbelievable apprehension for Michele and me. Of course, as in all things Katy, she did the exact opposite of what we were worried about and did fantastic. She even cried when she had to leave. Hopefully this week brings more of the same.
At home, she’s moving forward more and more often on her train and her gait trainer. We can only hope she keeps getting stronger.
This week is also school week for the rest of our clan, as well. Maggie and Bryan began their seventh and fifth grade years this morning and Sean and Timmy start freshman and sophomore years at DeSmet Jesuit High on Wednesday and Thursday, respectively. Sean made first cuts for the Spartan’s soccer team yesterday and will continue tryouts tomorrow.
Planning for Katy’s addition continues. We have to say a huge thank you to Robert Trask and Phil Hecht at Parkway Construction Services for meeting with me last week and helping put together a full schedule for the addition. Their help has been incredible these past few weeks. Also need to thank, belatedly, Jeff Hampton, the architect who designed the addition for us. More and more, we’re discovering just how good Jeff is as we go further down this road. His reputation proceeds him in a lot of my meetings and he’s been awesome to deal with. Thanks guys!
And finally, Hope begins her intermediate training tonight and Bryan’s going to help me this time! Even better, Hope is almost completely trained on our invisible fence system at the house and can now run around the backyard at will. (Except she only prefers to do this when someone is out there with her. I think she gets lonely.)
Thanks for everyone’s support. Talk to you soon!

TUESDAY, AUGUST 12, 2008 1:51 PM, CDT

This week Katy has had some major advancements in the way of swimming and with her gait trainer. It is amazing to watch her stand and try to walk in the pool (gotta love that weightlessness). Hopefully, it will continue to help build muscles in her legs so that someday she could possibly walk??? She is also balancing herself in a swim ring which means she is gaining control and strength in her core. (another huge factor in the possibility of walking someday).
We have also been working in her gait trainer. Again, thanks to Blake Floor Co., she can use her trainer in our home. She is actually trying to move it around. YEAH Katy!
This is Katy’s last week with her wonderful therapists. She starts school on Thursday and will continue her therapies (except aqua and horse) through the school district. We have been blessed by having the best group of therapists and we will miss them all so very much. They have made Katy’s life so much more better.
Once again, thanks to everyone who has offered hope, prayers or construction help. It means the world to us and we will never be able to express our thanks enough. We have all heard the saying, “it takes a village to raise a child”… St. Louis thanks for being our village. We could never do it without the wonderful support you all have shown us.

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