Thursday, August 18, 2011

A "special" trip to Nordstrom

Or... "Swanky Special Needs Kids Stuff."

Usually, I am all about saving cash, especially when it comes to kid stuff. They just grow too darn fast. (okay, and I'm kinda cheap... nothing makes me happier than scoring a deal in the clearance section of the discount store!). But, sometimes, you get what you pay for.

At least that was the result when, couple of weeks ago, I succumbed to the potty watch. We've been working on toilet training Simon for about a year or so now, with gradual improvement (and a LOT of patience). However, I've recently had to accept the fact that we've hit a wall when it comes to getting Simon to recognize for himself when he has to pee. He can tell us when he needs to poo, but we think that for #1, the sensation may just not be registering since he does have a decreased sense of feeling in some of his muscles. To compensate for this, we've decided to try to time-train him, for now.

Time-training simply entails putting the kid on the potty at intervals regular enough for them to stay dry. For Simon this seems to be every hour. Prior to now, I've used the pull-ups potty app to create time alerts, but with Simon going back to school soon I really wanted to introduce something that was both a bit more portable AND that started to put him more in control of "potty time."

The "Potty Watch" does this very well. You can set the timer for a variety of intervals and when the alarm goes off it plays a cute little song and lights up, getting his attention effectively. The price isn't bad, either, $9.99!! Total bargain. And it worked! For a week... almost 2. Just as Simon was getting the hang of it, it broke. And, frankly, I wasn't thrilled with it. It looks like a little toilet and it says "potty watch" right on the face of it. I so totally didn't want to send Simon to school wearing that; even if HE doesn't know the difference, I don't want to give other kids any reason to laugh at him.

This watch, and the only other like it (which was a bit less conspicuous), both got poor reviews for quality on Amazon. Knowing now that I am in this "time training" thing for the long haul, I wanted something that wasn't going to fall apart. My husband (something of a watch junkie) suggested a Baby G, since they have a lot of features -- one being an hourly alarm. Not the cheapest, but not the most expensive. And it WORKS, and won't fall apart (and I'm pretty sure if it does Nordstroms will replace it)! Best of all -- It looks cool and not at all like a toilet! Score.

My other fab find of the day was a pair of Vans. I tend to go very cheap on Simon's shoes because I need to buy two of every pair. One at his normal size, and one two sizes larger for the foot with the AFO (brace) on it. I usually shop at Targét for a couple pairs of Converse one-stars. These are cute, but honestly, the different shoe size thing is awkward. To look at, to buy, and -- most importantly -- for Simon to walk in.

Being that we are approaching the start of a new school year, I browsed in the shoe department at Nordstroms to see if they had anything cool for a little boy starting Kindergarten. I also like to look there because, sometimes, the nice folks at Nordstrom are willing to sell a mixed pair to a cute little kid and his crazy mommy. I was immediately drawn to a cute pair of bright blue Vans -- they were funky and they had everything I look for in a shoe for Simon -- mainly velcro and a wide rounded toe. However, I got a real surprise when Simon tried them on. For the first time, EVER, I didn't need two different sizes! The shoe is wide and stretchy enough to fit the brace without having to go up a size.

So, after this little shopping spree, I'm feeling pretty good about sending a very stylish child to Kindergarten. I might be an emotional wreck, but damnit -- he looks good.

PS. On a side, note, if you have been following, I don't have any news on Simon's test results yet. He went back for another round and we are still waiting. The good news, however, is that he hasn't been vomiting and we can definitely rule out the shunt malfunction for now. I'll let you know when I hear something -- I've been calling the Neurologist every day!

Thursday, August 4, 2011

Worry Doll

For the past few weeks -- ever since Simon's last seizure -- Simon has been vomiting on a pretty regular basis. Totally out of the blue. One moment he is just standing there, the next he's got a pool of.. well, you know what.. at his feet. Even the babysitter (bless her!) has learned how to catch it bare-handed.

At first, we thought that this come-uppence was due to the increase in medication (it is a documented side effect). But, after 3 weeks, we weren't so sure and neither were Simon's doctors. Last week we visited the neurologist and she threw out a lot of (scary) ideas. Metabolic disorders and shunt malfunctions were at the top of the list.

So, we got tests done and the doctors conferred and we waited. I worried. Actually, I had a total meltdown. For an entire evening I was completely non-functional. I hadn't told anyone about my worries, or about what was going on, and I think I imploded a little.

I suspect that all people are, on some level, superstitious. Not necessarily walking around with talismans and incantations -- but maybe just holding back, guarding thoughts and speech against jinxes. Whispering our fears to imaginary "worry dolls" and setting them aside, leaving them underneath our pillows to turn over quietly in our hearts, in the dark.

If we don't talk about something, it won't be.

Unfortunately, the denial/talisman tactic didn't made me feel any better. I certainly wasn't sleeping better at night, and it didn't prevent my meltdown last week.

What helped was venting, and having a good cry. Learning more, through online research and emailing doctors with lots of questions. I can't say I have eliminated the worry, but I have deflated the balloon of anxiety a bit. Which is a good thing, because, although Simon has not vomited all week (the babysitter is especially relieved), his blood tests came back with abnormal results, and so we need to get more tests done. I know that no matter what I am feeling -- if Simon needs something -- whether it is more tests, or (yikes, I am going to say it out loud) surgery, to correct or repair his shunt, I have to be together. I have to be his talisman against the scary, and the painful, and the unknown. Worry dolls don't cry.