Champions League

Finally coming off of my blogging hiatus!! Life has been so busy and crazy (I know I always say that--but it's true). 

If you follow "Lefty" on Facebook or Instagram, then you saw the photo I posted about a week and a half ago of Curtis after his first t-ball game. A few weeks ago, a friend told me about something called the Champions League, and I instantly contacted the head of the organization to see if there was still a chance to get Curtis on a team. I was SO happy when I got an email right back saying they had a spot for him. A few days later, we headed to the field for his first game.

The Champions League pairs kids with specials needs with Buddies to assist them during what I would really describe as more of a modified game/practice. During this hour, the kids and Buddies practice different baseball skills, including throwing, catching, and fielding the ball and hitting off a tee. The Buddies remain with their same Champion player the entire season, with the hope that a relationship forms and the kids get excited to head out to the field to play each Saturday. 

So far Curtis has played two games. He has absolutely loved each one of them. His Buddy (and all of the Buddies, I believe) is a high school student and he is amazing--so sweet and patient. Curtis adores him. 

Here are some of the many photos I took from the first game:

One of the coolest things is that this league was started by a 15 year old kid! I find that amazing. 

To read more about the league or to find out how to sign your child up to either be a player or a Buddy, you can visit the La Costa Youth Organization website and visit their CHAMPION DIVISION page. Until then...Go Padres!!! :)

New Gear

I have a lot on my mind, folks, and we are already heading into the second week of May! But I want to first share Curtis' new leg brace since I have discussed it in previous posts but have never shown it. 

I'll start by explaining what it is. It's called an AFO, which stands for ankle-foot orthosis. The main job of Curtis' AFO is to prevent foot drop, which was causing him to trip and fall on his face (especially when he was tired). Curtis only wears the AFO on his left leg/foot.

The process of getting his leg casted was easy-peasy. I only took a few photos because it went by so fast! They wrapped his leg up in a cast using fiberglass tape (just like you would if you broke a bone), set his foot in the position they wanted, let it set for a few minutes, and cut it off. Done! He sat watching the orthotist's iPad the whole time and wasn't bothered at all.

Wrapping the leg with fiberglass tape

Cool as a cucumber

Cutting the cast off

A few weeks later it was ready. It was a lot bigger than I expected and the whole process of getting it on is a struggle, I won't lie. But so far it's doing its job and Curtis isn't complaining about it too much so I call it a success. 

The kids at school asked about it the first day he wore it and he just said, "It's my brace." (Like...duh!) They didn't ask any other questions. Kids are awesome like that.  

Brace Yourself

Is it March already? I guess so.
I guess I kind of suck at this blogging thing. I usually think about posting in the middle of the day, when I'm away from the computer, out driving the kids to one of their after-school activities--and the next chance I get to actually sit and write is around 10:30pm, when all I want to do is crawl into bed and sleep. I don't see my days getting any less busy in the near future, but I will try to keep the updates coming.

Let me start by saying that 2013 ended well. We had a great Christmas with family and a fun New Year's Eve celebration with friends. We spent New Year's Day at the beach with our dog, eating burritos and watching a perfect sunset. Curtis loves the beach. And he loves burritos. If he cared at all about New Year's, I'm pretty sure he'd think it was the best ever.

We started January 2014 off with our 6-month recall visits at Rady Children's to see the orthopedist and the rehabilitation specialist. 

 

It's nice that they schedule the appointments back-to-back for us (and they are in the same room so we literally don't need to go anywhere between the two appointments), but the appointments still tend to be long. You can count on at least two hours to see the two doctors. I try to plan accordingly for these visits, but it just never works out. Curtis get bored and tired and upset. Generally, I don't let him play with an iPad or my phone, because when the doctors come in and ask him questions or want him to do something, he doesn't want to participate--or he throws a fit when I take the device away (we're still working on iPad etiquette...it's taking a long, long while). That leaves us with coloring, singing, talking, and whatever...for a long time. It gets boring (for him, at least) fast. Real fast.

 

drawing a bug or a monster--something with multiple legs

        

This appointment was no exception. Curtis was not happy from the get-go. He just wanted out of there. I think he just knows by now that he is going to be stuck in that room for 2 hours and he's just like, "no." Especially since there are residents that roll through and do the same things as the doctors and ask the same questions over and over. It gets old. But it's necessary and I understand that. He, unfortunately, doesn't.

Not a happy camper

 

In any case, after cruising up and down the hall several times to examine how he walks and much discussion with both doctors, it was decided that Curtis needed a brace for his left leg. It's going to be something that helps prevent his toe from dropping, which is something he's had trouble with in the past and is something he's starting to have a little trouble with again. I noticed it a few weeks before the appointment and mentioned it to the doctors. Once they had him take a walk down the hall, they noticed the toe drop right away and said that it wasn't too bad, but it was definitely something we should take care of. They did, however, sort of leave the final decision up to me. To brace or not to brace? In the end, I agreed that he should have it--he's taken some really hard falls in the past and I feel like if there's anything I can do to prevent that, I am all for it. He won't have to wear it all the time, but on days when he is walking a lot or when he's playing sports, it will be a good idea for him to have it on.  

 By the way--check it out! Little dude had his first soccer season!!

I won't deny that I instantly questioned my decision. Does he really need this thing or not? UGH! 

So the appointment was done and they sent us off...we will go back in 6 months for another recall visit...

And then Curtis and I cruised around the grounds of Rady Children's (it's kind of a cool place and he wanted to play a little)...

His favorite--the "Incredible Circus" ball machine

 

Frog King--he'll only get this close

Aargh Matey--captain of the ship!

And then, folks...something happened. A sign from above, if you will. Curtis tripped over his own feet. He bumped his head. He cried. He got a red mark on his forehead. And, with that, my previous concerns went away. I no longer question my decision about the brace. It sucks that he has to have it, no doubt, but he needs it. No more boo-boos like this, he's had too many of them in his lifetime :(

Not the best photo, but all up near his hairline it was red

What a busy morning we had...

I'll be sure to show off the new foot gear once it's made. We go in this Friday to get a casting made of his foot/leg since the brace is custom made for him. I'm not quite sure how long it takes after that. 

In other news, a few weeks back I registered Curtis for KINDERGARTEN! Holy moly! Excited, nervous, freaking out, happy, scared, (did I mention FREAKING OUT?). Yeah, it's crazy to think that he's almost there. Very crazy. I'm excited for him.

Overdue December Update

I just realized that I never updated after my last "vent" post.

So we had the meeting and I think it went well. 

The good news: there is a new OT at the school and so far I like her A LOT. She seems really with it, on top of things, etc. Complete 180 from the other OT so far. She totally agreed with me about the handwriting goal and said she was "surprised that he didn't already have one." We added it to his IEP. Boom. Just like that. Easy-peasy. Yay.

In the end, I didn't push adding extra hours of OT because they showed me that he was already almost caught up on hours. I have the OT's email and she responds when I email her (something that never happened with the other OT) and see I her around the school (also something that never happened with the other OT)...I'm feeling comfortable with her and with the team's promise that they will "stay on top of it". Trust me...I will keep on them! 

Curtis' speech therapist came in and said that he is doing great. She is going to do a formal evaluation on him in a few months and we are all meeting again to review that evaluation. It is her belief that he will be ready to be released from speech. I have talked to some friends who have kids or have had their kids in speech and they have mixed feelings about this. If anyone has any advice for me about this, please let me know. Curtis has been in speech therapy since he was a baby. On the one hand, I think I'm almost afraid to let him leave speech therapy. Like--what will he do without it? Will he be OK? And on the other hand, I think--WOW, look at him! I never in a bazillion years thought he'd make it this far. To think that we went from being told he may never speak, to having him bounce out of speech therapy before he starts elementary school. It's really unbelievable.    

His preschool teacher was at the meeting. I had told her a few days before that I didn't think she needed to be present at the meeting, but now I'm glad she was there. She really backed me up on a few things, which was great. She also piped in that Curtis' social skills were really "blossoming" this year. It's always nice to hear things like that.

We are all meeting again in a few months. That is when we discuss the speech eval and I think we might also have an early chat about kindergarten. I did ask if they thought he'd be placed in a kinder class at his brother and sister's school. Unfortunately, they can't really say--it's all a matter of what is best for him and every school in the district has something a little different in terms of what they offer for kids with special needs. Of course I want the best fit for Curtis, but I'd be lying if I said it wouldn't be a huge disappointment for him to be at a school other than our "home school". His big sister, especially, would be devastated. We'll cross that bridge when we get there, but we are getting there so soon! EEK! Unreal. 

Other news: Curtis is still swimming, although he's been sidelined a few times by ear infections. I have to be more diligent about putting in swim ear drops after his lessons. He has had outer ear infections, or swimmer's ear. They clear up fast, but are no fun while they are there. He is still working on his front breath and they are also now working on teaching him some elementary back stroke since he is so good at floating on his back! 

A few other photos just for fun--

 Here he is giving Santa his detailed list...

Somehow caught my cutie all alone on the steps after we saw Santa and got this shot...

 I hope everyone has a great holiday!

The Boy Who Grew Gills

I haven't really even been blogging long enough to include a link to the post about the swimming lesson mishap. You can just scroll down a bit to read about how they were, well, sort of a disaster for a while there. But, in case you don't want to scroll--here is the post.

Luckily, the swim instructors know what they are doing. Curtis' instructor has been in the water teaching kids for a long time, so when I approached her after his second lesson of full blown crying and asked her what I should do, I knew I would take her advice--whatever it was. What was the advice? To disappear. And that is what I did. The pool we go to has an area, right next to the pool (so I can still see everything and take a million photos and video) that is blocked off with some fencing. So, on that first day after she gave me my instructions, I just plopped Curtis in the pool, told him to have fun, and walked away. And guess what? He did fine. He did great, in fact. He had his best swimming lesson ever. And every lesson since then has been just as good, if not better. Now he doesn't want to get OUT of the pool! He actually cried yesterday because we had to LEAVE! He wanted ONE MORE TURN! Come on, kid, make up your mind! haha! Clearly, I'd rather have him crying because he loves it so much rather than screaming and shedding tears due to fear and the fact that he hates the water and wants to be out of the pool. So I'm OK with a little fussing over not wanting to get out of the pool. But only a little fussing. ;)

So, here it is--May 23, 2013--and I'm going to post a few videos of Curtis swimming. I can't believe it happened so fast. Mind you, we are still in the very early stages of swimming lessons! But I am honestly blown away by how quickly he picked this up. He is kicking his legs and moving his arms. The boy is on a mission! We are all so excited--big bro and big sis ask to see videos after every lesson (yes, they know I'm standing there, hiding, taking videos and photos--ha!)

Want to know what else is kinda cool? His OT told me the other day that his left hand seems like it's opening more and is more relaxed. She asked what we were doing differently and when I mentioned swimming her eyes lit up and she said, "I bet that's it! The swimming makes their body feel so different and he's moving that arm and hand around in the water so much!" How crazy is that? It could be totally unrelated--who knows--but both his OT and PT agree that swimming is great therapy for him. 

Here are a few videos for you of our little fish:

Make sure you put these videos on full screen mode since they were shot with my phone and from behind the secret fence so the quality isn't great. (Full screen mode is the little open box in the lower right-hand corner of the screen, just click on it and it will open the you tube thing up to full screen)--another tip is to click on the gear in the lower right corner and change the quality from "auto" to "480". This will make the picture MUCH clearer!

#1: Longer of the two videos, he's the one off to the right near the white thing on the side of the pool. He is swimming toward his instructor in the black baseball cap (and he disappears behind the blue milk crate for a second)

#2: Short video--again, make it full screen. You see him swimming to his instructor in the black cap.

Inspiration

Curtis has always been a timid little dude. He's always seemed to know his limitations. Which is something I've been grateful for. He's cautious. Maybe too cautious. But, again...I'm OK with that. Or, at least, I was OK with it.

He's getting older. He'll be 5 years old in less than two months! (Don't get me started...I have no idea how that happened so fast). And although I would still like for him to lean more towards being the "better safe than sorry" type, I also want him to try new things. I want him to push his limits a little. I want him to challenge himself. You have to understand--when I say this, I don't mean that I suddenly expect him to take HUGE risks. We're talking about a kid that just recently gathered up enough nerve to go down a slide. Baby steps.

Last week brought along something new for Curtis...swim lessons. No, it's not the first time he's been in the water. We are a water-loving family. And this kid is no exception. He loves water...

 Curtis in Grandma and Grandpa's pool--one year old

 on vacation--17 months old

 at the beach--21 months

playing in the Flathead River--2 years old

swimming at Grandma and Grandpa's again--age 3

vacation--4 1/2 years old

But swim lessons? This is new territory. Something different. I was unsure how he'd like them, to be honest. He doesn't mind having water poured over his head in the bath. He's OK with taking showers. But he isn't fond of going under water in the pool. I knew this would be a challenge for him. I also knew, from experience (my oldest went to this school when he was a baby), that this swim school would get his head under the water on the first day.

To my pleasant surprise, the first two lessons were fine! In fact, he loved day one. Loved it! He couldn't stop talking about it. Lesson two was good, as well.

Photographic evidence:

 Perfectly content--swim lesson #2
 

And then came lesson #3 just this past Monday. He cried almost the whole time. "I'm done, mom?" he asked repeatedly during the last 20 minutes of the 30 minute lesson. It broke my heart. I wanted to let him give up, I really did. I hate to see him scared and upset for any reason. I saw him tense up every time the instructor began to tilt him to the side to ease his face under the water. She is so gentle and so sweet, but as soon as he was done with his turn, he still cried.  

 Unhappy--I mean, does this break your heart or what?

So listening to him cry almost the whole time made me really upset, naturally. And it sounds awful, but I found myself sitting there wondering if this is all for nothing.

And then, of course, my mind wanders and I started to think about other activities, other sports, and whether he'll ever be able to "really" play them. Or whether he'll ever even WANT to. Maybe he won't want to because there will be something about his disability, his CP, that will hold him back. He'll think he can't do it, so he won't even want to try...that sort of thing. And just the thought of that makes me really sad, of course, because I loved playing sports as a kid. I loved being on a team. And I really think Curtis would like to play a team sport! But what if he just can't? I mean, he plays soccer in the backyard with his sister. And we play t-ball out back. But can he play on a team? And what about that swimming??

I swear to you, all of this garbage is going through my head on Monday after that ill-fated swim lesson. And I'm getting bummed. Curtis is napping...pooped out from all that swimming and crying. So I decide to hop on my phone and go on Facebook and look at this new group I joined a few weeks back. The organization is called CHASA and it stands for Children's Hemiplegia and Stroke Association. They have a regular group on FB where you can post questions or comments and then another page called the "Happy Place" where you go to post awesome things that your kid has done or achievements they've made or milestones they've met...things like that.

So I jump on the "Happy Place" (I needed some good news) and the first thing I see is this video of a little boy, Connor. He is 9 years old and he plays baseball--on a regular team. He has right-sided hemiplegia (so the opposite side from Curtis). The video below is of him hitting in his first RBI. You have to watch this, I think it's just awesome...

(A big thank you to his mom for allowing me to post this on the blog.)

So I watched this (OK, so maybe I watched it like 5 times) and all my doom and gloom went away. It was just the thing I needed to see and at just the right moment. Curtis can do these things, he really can! If you've been on his new FB page then you've seen the little video I posted of him hitting the ball off the tee. I mean, why couldn't he play for a team? What was I thinking? And he loves the water, so it's just a matter of him getting over his fears and whatever weirdness is going on with these swim lessons before he can learn to swim. Right? Why am I giving up on him so easily? Why am I second-guessing him and his possibilities?

I just have to say that this is why I love, love, love this new group that I've found on Facebook. Seeing the things they post about their kids (kids just like Curtis!) and what they can do has given me so much hope! I recently asked if any of their kids could swim and several of them responded that, yes, their kids swim, and they swim well. Some are even on the swim team for their school. Wow! Talk about inspiration. 

Time to push the limits, Curtis! You can do it, dude! If you can go down a slide--something we thought you'd never ever do, not in a bazillion years-- then you can do anything!

--I wrote this post on Tuesday, April 30th but didn't publish it. 
Curtis had another swim lesson today, Wednesday, May 1st. He cried again. We made him push through the lesson, though. I asked the instructor what would help--should I get in the pool with him or should I disappear? She suggested disappearing, since he looks at me right after he's done with his turn and says, "I want my mommy!" Ugh. I had to hold back tears today. It was awful. I was both sad and frustrated. Tough day. 
But...I'm not giving up on him! I look forward to sharing videos of him swimming one day! 
Stay tuned...