First Soccer Game of the Season!

The kids have been practicing very hard for the past two weeks and tonight was each of their first game. They got their jerseys tonight (both were happily surprised to see they got their favorite colors - light blue for Beans and red for Little Man).

Beans' game was first. The Timberwolves played hard. Beans even hit the ball with his head a couple times. This shot I actually caught just as he was about to hit it.


Tonight's game was against two girl(friends) that were in his class last year. It was pretty cute. I had to leave his game to take Little Man to his field just after halftime, but apparently Beans was the only kid on his team to score a goal! It didn't count due to having an extra player on the team :(, but who cares? He made a goal! I completely forgot about the much loved post-game snack ritual of youth soccer, but he was a trooper and didn't let it phase him.


Next on the schedule, the Winners played! (Yes, Little Man's team is the Winners :D) It was quite the game. The Beats took a lead early and were up 3-0 when the Winners came from behind and won 6-3!

Getting warmed up

I hadn't mentioned to Little Man's coach that he's autistic until tonight, but apparently he'd already figured out he was special. :P He had nothing but good to say about my sweetie. Coach Bobby told me he told his wife that he'd never had a player with such heart. "Every time I tell him to do something, he says I'm giving it everything Coach." None of us could ask for more.

Being in self-contained classes, and now homeschooled, I haven't seen him with neurotypical peers in a long time. Tonight's excitement made the difference starkly obvious. Little Man was full of jumping happiness. :) He gave it his all though, I only had to remind him one time to look at the ball, not the ground. When he wasn't playing he was right next to the coach, echoing his directions to the team.
What a great night....now we do it all again tomorrow. :D

WTG Little Man!

When I started home schooling the kids a few weeks ago, Little Man knew his 1's, 2's and some of his 3 times tables. Today he did a test on his iPad with multiplication up to 10x10. Here's the result:




Home schooling isn't a long term option for us, but seeing the amazing progress that both the kids are making gives me so much hope. Little Man has made more progress in the past few weeks than he has in the past three years of school. Add to that this article that my brother found, that shows the autistic brain is exactly as I'd thought of it all these years - just geared differently, but with different strategies and teaching methods definitely capable of learning - and we have a lot of hope.

I have every hope that after we move and get the right assistance set up, Little Man will continue his amazing progress. I don't care how long it takes, I'm just so happy to see lights coming on in that amazing, unique mind of his.

A Milestone...Kinda

Last night Beans told me his tummy hurt. Now in most kids, tummy bugs are just one of those things. You deal with them and move on. In Beans, who is fully dependent on tube feedings, a tummy bug all too often has meant walking a fine line between trying to keep him hydrated and keeping him out of the ER or admitted. So of course last night, when I heard those dreaded words, my mommy mind started running. "Oh crap, how can we manage this at home?" "If he needs it, do I make the 5 hour drive to Orlando, where the children's hospital and his trusted team are, or do I chance the local hospital that I don't trust?"

I hooked his tummy up to a Farrell valve, allowing him to vent all night (throw up through his g-tube for those who haven't had the experience). He can't throw up due to a surgery he's had, so being nauseous is super miserable.

This morning things were still rocky. I tried a small feed which was promptly "redelivered" (yeah, have I mentioned that venting into a bag is actually about a million times less messy than the traditional method). Typically this would be the time I started getting really worried.

Where's the milestone in all this? Well, Beans took a few hours to rest then was able to tolerate slow feeds of Pedialyte through his pump! He's been able to keep in enough to stay hydrated all day and is now in bed with a slow feed. He's still having some pain, but I can kiss that worry of IVs goodbye, at least this time. WTG Beans!!!

Soccer!!

Today the heat really made itself known here in Florida. I forgot how much the heat takes out of the kids. I'm also trying to figure out how to juggle Beans' tube feedings. If you feed him when he's too hot, he gives it right back. Not a productive use of calories at all. ;)

Ignoring the heat, I signed the kids up for spring soccer. Beans played last year and really loved it. He's been begging to play again for months. Little Man played once when he was in kindergarten. It was fine then because all the kids were little, didn't really know what was going on and were just happy to be running around.

This year he's in the 12 and Under bracket. It will be quite different. Sports here in the country in the good old south are a BIG deal. He is really excited though, so I had to give him this opportunity. I requested he be placed on the same team with his good friend, T. They will both be thrilled if they end up together, I just hope they get a patient coach. ;) Little Man and T are adorable together....and get quite hyper.

Apparently I didn't explain "registration" very well. Both kids were very disappointed to leave the fields without practicing. Oops. We should hear from their coaches this week and then they'll get plenty of soccer in. In the meantime, the backyard is providing great kicking practice. :D

One thing that I've come to know with Little Man - you just never know how he'll react. He may be totally into the game or he may get out on the field and be in his own little world. He's not the most coordinated fellow on earth, part genetics, part hypotonia, part autism, and part just being Little Man. As long as he enjoys it, that's all the matters.

Here's to a good soccer season!

Whoops

Long time no see. Sorry about that. Life's been busy here like everywhere. I'm not even going to attempt to chronicle the rollercoaster of the last few months. Let's just say there was much more fighting with the school district, trying to get Little Man what he needs, and with Beans' school trying to get them to understand what having a chronic illness is. It ultimately came down to the district here is not willing to do the things needed to keep them safe and help them in the areas they need help. So I did something (again) that I said I'd never do - pulled them from school completely and we're a home schooling family now. Yikes!

Sure never thought we'd be here. We're only doing this short term until the end of the school year. Then we'll get them setup in the next district after we move to Connecticut this summer. Though its something I initially dreaded, the difference in both the kids is amazing. Beans is more happy and giggly than I've ever seen him. He's put on 5 pounds!!! since I withdrew him. I don't know if there was something environmental going on there that was causing problems, if it was just the stress of being in the classroom or what, but he's looking great! Little Man's learning comes and goes, he has trouble retaining what he's learned. Using hands on materials where he can see directly what you're trying to accomplish has helped him learn some skills we've been working on for years. I wouldn't say they're mastered yet, but they're starting.

Health wise things are a bit backwards of where they usually are. Beans is actually the stable one right now! Growing and gaining weight, no food is terrible on the mind, but so good on his body. I constantly think what a cruel disease eosinophilic disorders are: you feel terrible all the time so you never want to eat, but take away the food and you feel good and want to eat but can't. He sees the GI next month and we're hoping he can start food trials to find at least something he can safely eat.

Little Man is the iffy one right now. Emotionally he's doing very, very well. Health wise, not so much. He's lost 15 pounds since October. First it was gradual and then he lost a huge chunk in a matter of a couple weeks. He refused to eat and was having terrible tummy pains. The pediatrician double his Prevacid and he sees the GI early next month on the same day as Beans. He is back to eating and has put back on a couple pounds, but still has a lot of trouble with pain and only eats minimally. We're supplementing him with Pediasure until the GI appointment because he simply can't lose any more weight.


Beans will definitely be having an endoscopy to check the status of his eosinophilic esophagitis in May and Little Man is likely facing one as well, possibly even other testing to get his tummy feeling better again. Little Man may be facing more stomach surgery or the GI may have other ideas. We'll just have to see. Ideally we can manage it with meds.

I graduate from college on April 30th, May 5th we head to Orlando for the GI appointments, then we'll hopefully be making our big move in June, July 1 at the latest. I need to leave enough time between the GI appointment and when we move for testing, procedures, and all that fun stuff that needs to be in order before we transfer over to new doctors.

In the morning we're signing both the kids up for soccer! They're so excited. It's iffy whether Little Man will be able to handle it, but we'll never know if we don't try so we're going to give it a whirl. :D