Tonight I sat up in my bed with Katy after the two of crawled around my room together. It’s one of the cutest things I think I’ve ever seen her do. We know she has the ability to crawl but she doesn’t use it very often. So, when I said, “Come on, Kates, crawl with me!”, I wasn’t expecting her to crawl for long. Oh, but I was in for a surprise. She crawled right next to me back and forth across the room with a big smile on her face. Sorry – That one didn’t make it on film. That one was for me.

This week has been tough for one main reason: allergies. This year has been horrible for my allergies, for Shel, for everybody in my family. And Katy the worst. But the bigger problem for us goes deeper than this. You see, we have two problems here. First, getting Katy to take her medicine. (Huge problem.) Second, getting Katy to stop using a bottle. (Complicated problem.) What happens is this: we decide (for about the 20th time) that it’s time to get Katy weaned off her bottle. So we stop giving her the bottle. Katy stops drinking much at all. Katy doesn’t get her medicine in her. Katy is not only getting dehydrated, but now her allergies begin to attack. Her little nose just runs non-stop. She’s miserable. She doesn’t sleep. Which means we don’t sleep. So, what do we do? We end up giving her the bottle back, so she can get her medicine, so she can breath, so she can sleep, so we can sleep. It’s a never ending cycle. But we honestly have no idea, at this point, how to get her to take her medicine any other way. It is quite literally impossible to force medicine down her throat. She clamps her mouth shut and will gag up anything you get past her teeth. We’ve wasted countless number of pills in the past trying to do that. Running out of options, here…

Saturday was Katy’s second time out with her wheelchair as part of the SPENSA (SPecial Needs Soccer Association) program. I won’t say we were surprised, but we were extremely thankful and really, really happy to see Jenni and Whitney from the Lindenwood University Women’s Soccer Team come back out. This was not a mandatory thing for their team this week. They didn’t have to be there. But they were there to help out my little girl. That means a ton to us. Katy’s physical therapist, Amanda, and her husband Tim also came out to watch her. Amanda played soccer for Maryville during her college days. So Katy had her full entourage out there. Unfortunately, her allergies were so bad she really didn’t want to do anything. When in doubt with Katy, go fast.

I felt really bad for Whitney and Jenni. They had no idea what I was getting them into when I asked Katy if she wanted to play “Run, run, run.” When Katy nodded her head, “yes, yes, yes,” Whitney asked me, “What does that mean?” Well, it means you run, run, run as fast, fast, fast as you can, can, can. And if Katy thinks it’s fun, you do it over and over and over again if you want her to keep smiling. I can’t believe how many times they did it. I mean, thank God they’re soccer players and they’re used to running. I think I would have puked! Every time they would stop, Katy would go “Whoo!”, like she was the one running down the field. It was hysterical! Watch the video below and you’ll see what I mean.

Katy participated in her first day of wheelchair soccer practice today as part of the SPENSA (SPEcial Needs Soccer Association) program in St. Louis. We didn’t even get signed in before wonderful young ladies from the Lindenwood University Women’s Soccer Team decided Katy was who they wanted to work with for the morning.

Hey, we weren’t complaining! Jenni, Maggie and Whitney (along with a number of other players, as well) had Katy kicking, throwing, scoring, hokey pokeying and dancing before the hour was through.

The only struggle Katy had was pushing her wheelchair on the turf. There is just enough give in the surface to bog down on the wheels. Even more annoying to her was the little pieces of fake grass that kept sticking to her fingers from the wet turf as she rolled her wheels. Even with all of that, she still did really well.

There’s two things here, I think, that mean the most to Shel and I: First, Katy is doing so much better working with new people. The little girl that cringed if new people came near her is long gone. Second, Katy just seems to have this extraordinary effect on people that work with her for any amount of time. People just fall in love with our little girl. That means a lot to us.

Maybe the cutest part of the whole morning unfortunately occurred off camera – actually while I was off going to get the car to meet Shel at the wheelchair entrance. Evidently, Katy had the whole Lindenwood team surrounding her saying good bye, giving high fives, blowing kisses and just being her usual cute self.

For the rest of the morning, here’s the video:

Posted a bunch of short videos on youtube this evening which can help me kind of put this summer in perspective. You’ve already seen the videos of some of Katy’s other firsts: first time walking in the pool, first time climbing up the stairs, saying her name, trying to escape the house, and on and on.

One other first for Katy this year was her first lost tooth. This went on for about a month. Katy loved to show everyone her loose tooth but when you tried to touch it, she would push your finger away with her tongue. The video below was her favorite video to watch for about a month after the fact. I’m not sure what she liked about it so much, but there was something about that tooth. She ended up losing it on June 21 while we were at Shriner’s getting new braces made. That video isn’t quite as fun. A lot of crying going on there… think we’ll skip that one for now.

In July, we ended up in another return to the hospital for a strange infection that popped up on Katy’s right leg. You can’t really see it in the video, but Katy’s right shin turned bright red and was physically hot to the touch. Not warm. Hot. We brought her in at 7 pm and we were still sitting in the emergency room long into the night. The video below happened at about 10:15 that night, a full hour and a half before they moved us up to her room. I spent the night with her there while they had her hooked up to an IV from about 1:15 am through about 2 pm the next day. Somehow we ended up going home that afternoon; but not because the doctors solved the problem. Well, I guess you could say they did the job; the infection cleared up by 11 am the next morning. The only problem is not one of the doctors believed that the antibiotics could have worked that quickly. Just another mystery. Thankfully, nothing serious came out of it.

This final video typifies what Katy is like as a sister. She’s taken to calling her big brother Bryan her “buddy.” The best part about this video is that this wasn’t some unique event that never happened again. This is pretty much what dinners are like with Katy – as long as she’s not completely exhausted.

Don’t forget to sign up for our e-mail updates! Our home page should have everything there for you. Right now, we’re just sending out every Monday morning with everything posted from the week before.

Thanks for following along with us!

todd

I know, I know, everyone’s been wanting information on how our little girl did on her first day of kindergarten and more. Truth is, as Katy is prone to do, she made everyone wonder what all the stress was about.

No nap? No problem! From a half day to a full day in school? No problem! Brand new teachers who haven’t worked with Katy before? No problem! Just unbelievable.

Unfortunately, we don’t have a ton of “First day of Kindergarten” photos to share. Below I’ll post a little bit of the video my Mom took. See, we learned during pre-school that the best way to get Katy to listen to her teachers (or therapists, or anybody for that matter) is for Shel and I to be nowhere where Katy can see us. As soon as she sees me, then she wants me to take care of her. Yes, yes, I know, it probably means I spoil my little girl. Sue me. So, I didn’t actually get to take Katy to her first day of class. That job fell to Papa. It’s a job he loves. It also meant that photos and video responsibilities fell to Nana.

Thankfully, she has already been to her new school a few times to play, so she’s not completely unaware of her new surroundings.

Our biggest fears? Always the same – how will she respond to her new teachers and therapists? Will they be able to keep the improvements and advancements coming the same way her old ones did? We have similar thoughts with our other kids, hoping they get along well with their teachers, hoping they respond to a certain style. But I don’t thing it really compares to what we go through with Katy. You have to understand before Katy worked with Marcia – her music therapist – we had a non-verbal little girl. She used fewer than 10 sounds. Fast forward to now where we have a little girl that may not be able to accurately make every sound; but now we can’t get her to shut up! (Trust me, that’s a good thing.) When you have teachers and therapists that have that big of an effect on your child, it terrifies you to move to something else.

However, Marcia has reassured us that Katy’s new music-therapist is a friend of hers and is perfect for the job of working with Katy, so we’re excited about the possibilities.

Finally, if you haven’t yet, please sign up for the new e-mail function on the site! If you were with us back in the CaringBridge days, I know many of you got used to seeing the e-mail showing you every update. Well, now you can get an e-mail every week that will show you all of the updates we’ve made throughout the week. (I really don’t want to bombard you with e-mails more than that unless people start requesting it!)

A lot has happened since that last post of Katy walking in the water:

I’ve found myself dealing with stresses and problems I’ve been trying to maneuver around for five years. And unfortunately, there is a lot of misinformation that has gotten thrown around for far too long. I have no interest in airing my dirty laundry to the world, but I have decided that this needs to get taken care of head on. I just hope I’m strong enough to deal with whatever falls out from this.

We found out our entire Mayo Clinic appointment was canceled. Evidently, the doctors within the Pediatric Developmental Delay department relocated and somehow that voided our entire visit. Thank God I called to find out why we still hadn’t been contacted. They evidently sent us a letter, but we never received it (and believe me, any letter that said Mayo Clinic would have been opened immediately).  So after another bout of massive frustration, I went back and redid the entire application again. Now we finally have our dates: October 18 through 23. In fact, a package just arrived yesterday for us to have Katy’s genetic test redone. The test has improved drastically in the last two years and they want to find out if anything is different than what we were originally told.

We were featured on exceptionalfamilytv.com in two separate episodes: 1st was Michele and I; 2nd features Maggie and Bryan (okay, limited Bryan – he hated being on camera here).

Katy was also featured in the August issue of Exceptional Parent Magazine. I’ve put up the articles in the media section of this site. For the full magazine, visit: http://www.eparentdigital.com/nxtbooks/exceptionalparent/201008/

And, throughout all of this, Katy has continued to grow stronger and achieve more and more. The video below shows the kinds of things we’re dealing with now on a daily basis:

Sorry it’s been so long between posts. Life catches up with us every once in a while, I guess.

I have about 15 videos to post from the last couple of weeks; but they’re mostly going to have to wait. The one I’m posting today happened just this afternoon and trumps the rest of them. I know you’ve already seen the footage of Katy walking during her aquatherapy class. The video below is her walking AND swimming in our pool today.

You have to understand something here, Katy has never swam unassisted before. She has balanced on boogie boards or grabbed onto a hand; but she has never balanced herself before. Today she did just that.

That’s my little girl…

It has been quite the interesting last week or so at our house. As you can tell, I haven’t posted a thing since this past Wednesday. I came down with some sort of virus or cold. Katy was next in line. Bryan followed shortly after and last but not least came Shel.

Then, this morning, Shel woke up with a case of vertigo that left her so nauseous that she threw up anytime she moved her head. Yes, it has been that kind of week for us.

Not to say we haven’t had our share of laughs while all this has been going on. We all felt healthy enough at least to head out to Six Flags on Saturday for a morning at the water park. We found out Katy loves the wave pool. And she also loves to watch the Batman roller coaster. Would love to show you video of it but my phone camera keeps messing up videos for some unknown reason. So you’ll have to picture this:

As the roller coaster gets brought up to the top of its first hill, Katy yells at the top of her lungs: “CO-TER!! (coaster) UP, UP, UP, UP, UP!” And then as the roller coaster starts to head down the first hill… “Down, down, down, down, down. Bye, Bye!” We’ll be back later on this summer and I’ll get video of it. You have to understand this is EVERY time the roller coaster is going up. So every minute or so, we go through this again, all while giggling through waves coming in to the edge of the pool.

And for those of you not reading this on the Exceptional Family TV site, I wanted to share this video with you all. Katy is featured about the 1:15 mark. (Zach is the son of Exceptional Family TV host and producer Nathan Charlan. He has cerebral palsy and is one of the cutest kids you will ever meet.)

So, that’s the Fun part of this. What’s the Fears?

I’m not sure what to make of this, but as you know, I have a number of Google Alerts that keep track of certain phrases and topics. One of those is Chromosome 6 Deletions. I had discounted a number of alerts coming in until recently; but now I’m wondering if I’m missing something. Here’s the deal: probably 50% of the alerts I get for the aforementioned topic have to do with non-Hodgkins lymphoma – a form of cancer.

What does this have to do with chromosome 6 deletions? Evidently, there have been numerous studies done that show chromosome 6 deletions and abnormalities in many non-Hodgkins lymphoma patients’ initial biopsies.

Does this mean anything for Katy? I have no idea. I try to stay educated on as many topics as I can in the genetic realm now because of Katy; but I’m obviously out of my league once we get into these discussions.

If anybody out there has any thoughts on this or anyone that might know some answers, please let me know.

I have felt horrible the last couple of days and am about of gas tonight as well; but I wanted to share this video I just finished of Katy at her aqua therapy. (With a few clips of her talking with her sister on the way as well!

Aqua Therapy may be Katy’s favorite thing of all to do. Amanda (her therapist) has worked with her since Katy was about two, I believe. In that time period, she has made incredible strides. Take a look at the video below and make sure you watch to the end. That’s where the really important one is – Katy can indeed walk when she’s supported by the water. It’s a truly incredible sight for Shel and I to see. Also, you’ll notice Amanda has brought music into her therapy as well. ALL of Katy’s teachers and therapists have done this now.

Thanks for everybody’s continued support!

This Friday, we go back in to see Katy’s urologist. We’ll repeat the same tests we did back at the end of last year and see if the Deflux operation has stopped the reflux back into Katy’s kidneys. Since last October, when Katy went more than 30 hours in between tinkles, we haven’t had another incident even close to that amount of time.

But, the larger issue at hand for us is attempting to potty train Katy. My Dad, Katy’s “Baba”, has led the charge on this front, and for a while it looked like we were really making progress. That is, until these last couple of weeks. Suddenly, and for no reason that we can fathom, Katy’s “times” – for lack of a better term – have completely changed. We had nearly a month where she would pee around 8 am in her potty chair and then she would pee and poop around 12:50 pm following lunch – all in her potty chair. I can’t even begin to tell you how excited we were and how excited she would be when it happened. But, now, we’re back to Katy waking up with a full diaper and sometimes a soaked bed. We’re back to irregular schedules with nothing to go on to help us.

And I’m back to thinking about the possibility of this never happening. See, the problem we face with Katy is that no one knows if she can feel when she’s supposed to go to the bathroom. Back at the end of last year, her doctors thought that the signal from her bladder to her brain saying, “I’m full! Empty me!” was getting lost in translation somewhere along the line. And you can see where that possibility would come up when your daughter’s bladder can hold over 3 liters of liquid. (Yes, that’s one and half big Coke bottles. The nurses at the children’s hospital had never seen anything like it.) Whether or not this is something that is being caused by her chromosome 6 deletion or something else, I don’t know if we’ll ever know.

We’ve read all the articles about potty training special needs kids. We know what we’re supposed to be doing. Even better,  Katy actually thinks sitting on her potty chair is fun. But much of the time, even if she goes, she has no idea that it’s happened until she actually sees it in the container afterwards.

“Thank God” Katy has patient grandparents willing to keep working with her while Shel and I work during the day. And “Thank God” for the internet, because it’s the only place we can find size 7 diapers right now.

Suggestions are welcome!

Sorry for no updates lately. We’ve been swamped with graduation celebrations, work, work and more work, followed by work out in the yard.

But I’ve got some great videos and a few photos to share – one of which is really important.

Katy graduated from pre-school this week. This is such a bittersweet moment for us for two reasons: first, Katy has improved so much in the last year that it is impossible not to be happy with her experience in pre-school; but we’re also torn apart because we’re leaving that same group of therapists, teachers and assistants that made such a huge impact on my little girl’s life. We hope they know just how much we appreciate everything they did for Katy and for us. The daughter I have now is not the same girl who started pre-school two years ago. Here are a few photos from graduation.

Three of these photos are of Katy with Marcia, her music therapist. Just a couple of minutes before I took these, Katy was extremely upset. One of her classmates had started to cry during the “graduation” ceremony and once that starts, it’s really hard to stop Katy from reacting to it. Marcia, though, had her smiling and singing within about a minute and a half. We will miss Marcia so much next year. More than anyone over the past two years, Marcia discovered a way to get through to Katy and to make learning fun. More than that, she discovered ways for Katy’s other teachers and therapists to relate to her as well. Monumental is not to big a word to describe her impact on my little girl’s life.

Now, on to the big video from graduation. She doesn’t seem very happy here (even though I’m smiling from ear to ear watching her), because it’s been a long day. By this time, she has already visited her new school for next year and played with her teachers and therapists over there, come back to her current school for the graduation ceremony, made it through that, and then everybody wanted to say goodbye to her and get photos. She’s pretty much had it; but her occupational therapist, Rose, wanted to make sure I saw the big thing they’d been working on all year – Katy transferring herself from a regular chair to her wheelchair.

I was stunned. Just watch:

I’m a proud Daddy.