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."

 

http://www.amazon.com/Potty-Time-Watch-Blue/dp/B001AH8JNC/ref=sr_1_1?ie=UTF8&qid=1313703726&sr=8-1

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.

http://www.casio.com/products/Watches/Baby-G/BG169R-8/


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.

http://shop.nordstrom.com/s/vans-mid-skool-77-high-top-sneaker-baby-walker-toddler-little-kid-big-kid/3159330?origin=PredictiveSearch&resultback=402

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!

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.

Have your cake, and eat it too

One of the best things about being a special needs parent (yes, you read that correctly) is that you don't take the little things for granted. Small advances, so minutely incremental in the development of typical children they go practically unnoticed, is the stuff of miracles for a parent that has been praying for progress.

This past Sunday was full of such miniature miracles, and a lot of zucchini. Actually it was the zucchini that started the marvelous episode -- I had a plethora of the veggie lying about, so I decided to bake it into a chocolate cake (something everyone will eat!). As I leaned over the oven to check the done-ness of the cake, Simon wandered into the kitchen and the miracles started rolling.

Miracle #1 (which actually started a couple months ago), Simon ASKED A QUESTION;

"What are you DOING Mommy?" He asked.

"Baking a cake," I replied.

Miracle #2: Simon expressed interest in the task, and MIMICKED what I was doing. He took some oven mitts and put them on his hands, and he peered into the oven expectantly.

"Look, Mommy! Wow, cake! You want to make a cake!" (sometimes he gets his pronouns mixed up)

Miracle #3: Simon PRETENDED. Since the cake was already in the oven, I pulled out some play food and pots and Simon "made" a cake. "Look, Mommy! I make it!"

Miracle #4: Simon told me he wanted to add sprinkles to the cake, but he SPECIFIED that he wanted to do this on "Mommy's cake." I quickly iced the real cake and pulled out some rainbow sprinkles. I put Simon on a chair and handed him the sprinkles and he HELPED decorate the cake. Afterward, he was PROUD of himself. "I did it! I make it!"

Miracle #5: We cut the cake, and Simon ate the whole slice WITH HIS FORK. Slowly and carefully, he speared each bite and even closed his eyes as he chewed.

Miracle #6: To wash down the cake, I'd given Simon some milk. Instead of grabbing the cup one-handed as usual, he actually grasped it with BOTH HANDS and raised it to his lips, taking a long sip (an appropriate reward for a job well done). Then he set it down, carefully and evenly with both hands.

Best cake ever, don't you think?

Sorted

Sometimes my life is so exciting. I'll recount a little just to make you jealous.

This weekend, for example; I went to a yoga class. I shopped at two grocery stores and Targét (that's right, with an accent, I am THAT exciting). I hosted a play date and tried out a new frozen yogurt joint. Very swanky. I did all the laundry -- and folded it. I did some work and watched Harry Potter and the Deathly Hallows part one on on-demand. In bed.

But the true highlight of my weekend was sorting through the toys in the playroom. I was possessed with a passion for organization -- a deep need to clear the clutter, and so I conquered my own personal Everest.

It only took all friggin' day.

I don't usually let it get this bad. I'd like to say that I'd let things get out of hand just because I've been busy -- which is true, but not wholly. The whole truth is that I've been avoiding this particular clear out because of what it means.

It was time to let go of the "Pretty, Pretty Princess" game. The little bouncy ride-on caterpillar. A lot of the baby books. Many of the stuffed animals.

It means that my babies are growing up.

It also means that maybe I need to slow down a little. I work so hard to help the children grow, and worry so much about how they are doing that maybe I am missing the things I will miss.

I think, next weekend, I'll put the work and chores off a bit and spend a little more time playing with the toys in the playroom. Now, that would be exciting.

Get Away

There's nothing quite like packing for a beach trip with the kids to make me long for simpler days. Days when going to the beach meant throwing a bikini, a toothbrush, and a sundress into a cute little bag and dashing off to lie on the sand, work on my tan, and listen to the waves; occasionally breaking routine by reading a novel or going out dancing.

Sigh.

However, despite having to literally pack everything including the potty seat; I was looking forward to our trip to the beach last week. A change of scenery, time with family, and a chance to break a bit with reality -- namely work, chores, and therapy appointments five times a week. I even imagined that I would be able to mentally relax, simply enjoy the kids, and take a time off from worrying so much about Simon's present and future.

And, it was nice to get away. I needed that whiff of sea air, and I think the kids did, too. It was great to see our big, boisterous family, and I did manage to get a tan. But, my fears followed me to the shore. In truth, I was forced to face some things I'd been dreading wholeheartedly.

One thing I was prepared for. One my nephews is only a few months older than Simon, and watching Olivia play with him in a way so different from the way she interacts with Simon hurt my heart a little, dredging up unwanted "what would life be like if the stroke had never happened...?" thoughts. But, I had known this was coming -- and I was more prepared this time than I have been in the past. I let the thoughts come, and go. I checked myself when making comparisons, reminded myself to be positive. It was a little tough when the five year old cousin started asking questions about Simon's age and ability (and was in complete disbelief when I revealed that he and Simon were both 5); but, no harm meant or done. Simon is doing well, I remembered, he's okay.

Until he wasn't okay. Monday night, after a day full of parades, swimming, parties, and fireworks; Simon fell asleep in his car seat while we were stuck in traffic on the way back to the beach house. Sitting in the front passenger seat I found myself dozing off as well, until I was woken with a jolt by a horribly familiar rhythmic gurgling noise. The last time I'd heard that noise was November -- it was that strange sound that had alerted me to Simon's first seizure, the one that had lasted 2 hours and ended up with him unconscious in the PICU for days. I whipped around in my seat to see my fear confirmed -- Simon was having another seizure.

Though I was completely terrified on the inside, and I know Brian was too, we were -- to our credit (I think); completely calm outwardly. Brian pulled over and started to watch the clock (we've been told to administer Diastat if the seizure lasts more than five minutes), while I climbed into the back seat to unstrap Simon and lean him over so he wouldn't aspirate if he vomited (which he did). I looked into Simon's wide-open, vacant eyes and spoke softly to him, and to Olivia (who was freaking out). I told them what I didn't really believe -- that everything was alright. Then, just as we were getting ready to give Simon the medication and head to the hospital, he stopped. His blank eyes suddenly met mine, and he recognized me. He took a drink of water, and went right back to sleep. We took a collective deep breath. Brian merged back into traffic, and I sat in the backseat all the way home; holding Simon in one arm, and Olivia in the other. No one spoke.

I dialed the Neurologist on call when we got back. She told me not to worry. Kids with epilepsy are going to have seizures and not all of them are a big deal. They increased Simon's medicine a little since he has grown a bit, and they told me to call them if anything else happened. We have an appointment later this month.

So, all is well that ends well. We enjoyed the rest of the trip; swimming, biking, shopping, and playing in the sand. The kids had a blast with their cousins. I did get a great tan.

But, I didn't get away from my fear, I was forced to face it. I didn't get away from worrying about Simon -- especially with the increase in Keppra, which makes his mood swings volatile, something both hard to watch and to mitigate. Instead being relaxed, I was edgy. I had moments where I simply had a hard time keeping it together.

It has been a week since that episode, and I'm coping better. Coming home felt good, safe. I've tried to remind myself to be positive, and strong, and recognize the fact that the medication and the seizures are just a part of our life, they are our normal and I have to accept that. But I also recognize that there is a part of me that doesn't WANT to accept it. I don't want this for Simon. There is still a part of me that longs for a simpler time, and I may always wonder what life would be like without the stroke.