seeking a reverse kaye walker with wings

The other day I was watching Hannah make her way around the house with her walker and it really struck me, how much it must SUCK to have to drag this big metal thing around with her all day when all she wants to do is get quickly from point A to point B and keep up with her sister, have her hands free, and not keep crashing into the walls or getting stuck trying to go around corners. It made me really sad. I keep myself so focused on Hannah's progress with her walker (now she can lift the front wheels, now she can steer, soon she will be able to lift herself into and out of it safely...) that I don't allow myself to stop and look at exactly what it is that she's walking around in as she tries to go about her day like a typical almost-3 year old. I haven't looked that closely at her walker, in fact, since we got it. I've chosen instead to look past it, toward the potential it holds for Hannah in terms of independent mobility.

Ultimately that independence, in whatever form it takes, is what is most important for Hannah. She tells us regularly that this is what she wants. "I want to go on the potty. I want to climb into my chair myself. I want to walk around. I want to push the baby stroller...." and so on.

And I want this for her as well. I just with she could attain these goals without needing to lug her walker around with her. Grateful as we are that she has one and has figured out how to use it, it weighs her down and holds her back. And Hannah's spirit, well it's light as air and just wants to FLY. Maybe her next walker model after she grows out of this one will come with wings.

Roid Rage

If you've ever had to give your kids prednisone (steroids) for croup/wheezing/asthma, then you know what I'm talking about. It's true...even in small doses this stuff is EVIL. Poor Hannah started wheezing on Sunday night, followed Monday morning by a bad cold and cough. We thought we had the wheezing under control with albuterol and flovent, the two inhalers we have around the house for just these occasions. But on Wednesday even after a breathing treatment she was still really tight in her chest and wheezing. Off to the pediatrician we went and he prescribed prednisone.

It's been awhile (probably about a year) since we've had to give this to them so I forgot or blocked out what the side effects are like. Well I'm here to tell you that they suck. First off, Hannah has had a really hard time settling down for naps and bedtime. It takes 4-5 tries with lots of screaming and crying and requests for milk, songs and stories before she finally crashes. She's also woken up from her naps thrashing around, hitting and scratching and crying like she is pissed like nobody's business. I figured out yesterday that if I danced around the room with her really fast while shushing her and patting her back, she would settle down after a few minutes. It was like going back to the colic days. Other fun side effects include Hannah's immediate frustration and anger when she doesn't get what she wants, her constant whining and crying, and her urge to quickly lash out and scratch, pull hair or hit anyone in her path when she's upset.

It's awful.

Sunday is the last day we have to give this to her and I CANNOT WAIT. I want my girl back.

Stall Tactics

Isabelle is all about stalling before bed. It's gotten pretty bad. A friend of mine said she's started bringing a timer into the room with her when she puts her son to bed and that seems to have put a stop to it. I think we're going to have to try that tomorrow. Here's an ABRIDGED version of what went down tonight (with each sentence, I attempted to walk toward the door to leave but then she started up again with another request which, if ignored, would cause her to scream and cry):

"Mommy fold my blanket. Mommy wipe my eyes. Mommy wipe them again, they're still wet. Mommy I want green and blue and red candles for my birthday. Get my blue egg, Mommy. I want it with me. Mommy tuck me in. I need to kiss and hug you again, Mommy. I have to do it again because I missed. Daddy tuck me in too."

I almost threw myself out the window. Seriously.

The virus blues

So we had a relatively healthy summer, all things considered. The girls have steadily built up their immune systems and are less prone to catching everything under the sun. But all that fun at the Ranch took its toll and Hannah was down for the count most of last week. Nothing major, just a virus that lingered. In general she tends to get hit harder and for a longer time when she gets sick, as compared to Isabelle. So now, a week from the onset, Hannah is still not herself.

She doesn't have a temperature anymore or any other noticeable symptoms, she's just very clingy and cranky, doesn't have much of an appetite, and has little desire to do much in the way of independent mobility.

It's SUCH a bummer after the progress she's been making; she's been on such an upward trajectory lately that to see her stall out again is kind of crushing. I have to remind myself that Hannah works SO MUCH HARDER to do the things that most kids her age take for granted: sit, stand, walk, kneel, pull up...so she definitely deserves a break sometimes. In some ways, it gives me new respect for her perseverance and determination. It would be so much easier for her to just sit back and let the world go by while someone else moves her body for her. But she keeps pushing herself to do these things and I guess it's inevitable that eventually, her body will take charge and say, "OK kid, let's just chill out for a bit."

So we're chilling out now and watching a lot of Thomas the Train and dealing with the constant rain in our neck of the woods and basically, we have the virus blues...

The Ranch

We've been busy around here; we had family in town and then we went with B's family to this great family resort in the Catskills of New York: Rocking Horse Ranch. It was chock-full of nonstop activity and the girls absolutely loved it. Pony rides, two outdoor and one indoor pool, bonfires, a lake with kayaks/paddleboats/waterskiing, horseback riding for the older kids and adults...TONS of good food...very friendly staff...and all 12 of the girls' cousins plus aunts, uncles and Grandma.

We're still recovering a bit: poor Hannah caught some kind of bug and is still not quite herself. But despite that, it was so nice to get away, hang out with the rest of the family and also enjoy the girls at this amazing age of discovery and fun. I know I'm biased, but they're both really cool kids to hang out with so having this time with them was really special.

And now it's back to the grind...

Universal playgrounds

I've posted a few times about the playground issue because it's one I grapple with regularly. Playgrounds are such amazing resources for kids to develop all kinds of important skills and abilities, and most communities have them in one fashion or another. But so few of them are designed with a disabled kid in mind.

Now that we are raising a child with a physical disability it's hard for me to fathom that an inaccessible playground would ever be created in the first place. But like most people, until I got up close and personal with what it means to be physically challenged, I didn't spend that much time thinking about how inaccessible the majority of our communities are, not just playgrounds.

So now that I live in this world and am faced with it regularly, I feel compelled to try to do something about it and the playground piece is one I think I'd like to try to take on. I started to do some research and found out about this cool organization, Boundless Playgrounds, with the mission to help people like me get started on the road to building a universally accessible playground in their community.

If you go to the section of the site which lists Boundless Playgrounds across the country, you will find some amazing spaces that have been created for kids. It's incredible how even simple things like installing sand tables instead of sand boxes can make a huge difference for a kid in a walker or a wheelchair. Perusing the links to the different playgrounds is like visiting Santa's workshop. I'm so excited about the possibilities...and also totally overwhelmed at the idea of trying to make something like this happen around here.

I'm not sure where I'll go with this, but if anyone out there has ever tackled a similar project in their own community, I'd love to hear your story.

Potty time!

We're happy to report that Miss Isabelle is marching her way toward a diaper-free life! She is now wearing underwear all day except for naps/bedtime and has had few accidents. We've been "dabbling" in potty training for awhile now and just finally decided to take the plunge and let her go for it, and she's done great. I can't get over seeing her running around with her little bum in underwear instead of a big bulky diaper. It's all I can do to not give it a big squeeze every time she runs by.

Hannah expresses a lot of interest as well which is great. She definitely wants to try and knows when she's going/has gone. She just hasn't quite figured out how to hold it until she gets to the potty. We'll get there!