Monday, April 30, 2012

Good Help is Hard to Find

This past weekend was a first. Justin and I spent our first night away from both our kids. The total time away added up to about 19 hours, but it included the overnight, so it counts! Ian and Lydia had a great time with their grandparents, and Justin and I had a great time going out to dinner and seeing West Side Story. I also especially liked the part where we got to sleep past six in the morning.

Besides being our first night away from the kids, it was our first date night in over two years. We rarely go anywhere without the kids -- and what that really means is that we rarely go anywhere. Lydia is still very much in her stranger-danger phase, and Ian's special needs make it hard for us to leave him with anyone that isn't fully prepared. We can't just hire a high-schooler to babysit him. Besides not being able to walk or fully verbalize, he has serious gaging/choking issues with food, multiple medications that require specific dosing instructions, not to mention the catheterizing of his bladder that needs to happen every few hours. All that coupled with my anxiety over his care equals not many caretakers in his life.

This issue with his care is one I've been trying to get over (a little bit) since we've had a second child. Sending him to school for a few hours each week, and having to trust that his care needs are being met there, has gone a long way. Next year he will go to school some full days, which means he will have to eat lunch and be cathed at school, which is brand new territory for both him and me. I know it will be good for both of us, but a part of me is also dreading it, big time. For now, I will revel in the fact that I spent last weekend out having fun with my husband, and I only texted my mom five times to check on the kids. For now, that's enough.

Wednesday, April 18, 2012


Last week was spring break for Ian, and though the weather wasn't nice enough to do some of things I'd planned (the zoo, parks), we still had a pretty nice time playing at home and doing indoor activities. With the help of one of my friends, I took the kids to a pizza buffet/arcade-type place, which was a first for Ian. I was worried that the noise and lights of the arcade would give him sensory overload, but after he got used to it he was fine. He has a skee ball game on his iPad, so that was the game he was most excited about when we entered the arcade. The ball was too heavy for him to throw all the way up the ramp, but he had fun throwing it and having it roll back down to him. He also tried mini bowling and arcade-style Mario Kart, to name a few. He sat on my lap and I did the petals and he did the steering. He loved it until the steering wheel vibrated -- that really surprised him and he snapped his hands off the wheel and wouldn't drive anymore. At the end we had enough tickets for a little ball with SpongeBob on it, so he was really happy with that. It was a good day and I was glad to get him out of the house and trying something new. He even ate pretty well at lunch (but probably only because I was holding skee ball over his head)!

Ian and I playing Mario Kart in the arcade

In other news, the judge's decision about Ian's out-patient PT visits came over the weekend...our appeal was dismissed, so now Ian's PT visits are officially cut in half (down to twice a month) by the state. It was disappointing, of course, but now we will appeal to our private insurance to cover it, and hopefully they will. At least it is near the end of the school year; over the summer he will probably be approved for once a week therapy because he will not be getting any from the school district.

Speaking of insurance, we now have Ian's toilet seat ordered and are waiting on approval from insurance. I'm hoping to get it by the time school ends so that we can spend the summer getting used to it and into a routine. Cathing on the toilet is the first step on the road to getting Ian out of diapers and helping him to be independent in the bathroom -- it's a road I am eager to get started down!

This week, Ian is happy to be back in school and I am happy to be back into our normal routine.

Friday, April 6, 2012

Mobility Envy

I’ve noticed that lately Ian has become very aware of his little sister’s increasing mobility. She just turned one this week, and while she isn’t walking yet, she is scooting around on her butt to get what she wants as well as pulling up and standing at the coffee table in our living room. Last week she was practicing walking while holding onto my hands and Ian immediately pointed to her, then to himself, meaning he wanted to do what she was doing. Even with his AFOs on, he can’t lock his knees to bear weight on his legs, so I basically just had to hold him under the arms and let his feet drag on the floor. He was kind of satisfied by this, but I could see that he could tell it wasn’t the same as what he’d seen his sister do.

Ian has always been very unmotivated when it comes to mobility. As a baby, when he was on the floor he never wanted to roll or commando crawl with his arms. We’d bribe him with all kinds of toys, but he’d just lie there like “I don’t want it that much”. When he did finally roll over it was only to get off his tummy, which he hates to be on even to this day. Justin and I ended up just carrying him around because he’d just stay put forever otherwise. He didn’t move around our house on his own until we got him a loaner wheeled-stander at 18 months. Even now that he has his wheelchair he doesn’t really tear around the house, preferring instead to sit at a table and play. That’s just what he’s used to.

Enter baby sister. She scoots, she stands, and soon she’ll be walking. Obviously Ian sees people walk all the time. He goes to school with tons of other kids who all walk while he rolls his wheelchair. It never seemed to bother him one iota until it was his own baby sister. Somehow, seeing her walk, even though she couldn’t do it on her own, flipped a switch in him. Suddenly he thought, “if she is doing that, I should be doing that too”. It’d be great if Lydia’s development helped Ian be more motivated to move on his own. He’ll be getting HKAFOs, hopefully in the kinda-near future, so maybe one day soon it will be him walking while holding onto my hands.