March 5, 2012

3:21 Day 5

Oof. Mondays. Am I right?

It's been a long day for us. Normally, Mondays and Tuesdays are our down days. The days we try to escape to the playground, or at least the backyard. We hang out in our pajamas until 11, watch a little Sesame Street, and stretch out on blankets on the floor. Samuel has therapies on Wednesdays and Thursdays, so I try to keep the beginning of the week free for down time. More and more lately it seems that once we hit Wednesday, the rest of the week goes by on fast forward.

I like slow Mondays. They are good for us.

However, today was not that kind of Monday. I'm heading back to work soon. Just part-time, about 10 hours a week. I'm returning to the swim school for shifts on Monday and Tuesday nights. I'm going back to a different job than the one I left. This one allows for a lot more flexibility than having in-water teaching hours. It's a great thing and I'm really excited about getting out of the house for work, but the trade off for these few hours out of the house is less flexibility in our schedule for things like doctor's appointments and meetings with our therapy team. Looking at the March calender, we are booked up every Monday morning this month. Not a mistake I will be making again!

Actually, this morning, our busyness had very little to do with Samuel, for once. Luke got to be the main focus of all today's appointments. We had an appointment with Early Intervention this morning and then had a home visit by our service coordinator this afternoon.

Back in January, I shared some of my frustration and anxiety over how to balance our home life around meeting the needs of both our children. Samuel's schedule can get overwhelming as we meet with therapists and specialists, along with all the normal well baby visits to the pediatrician. Luke, up to this point, has been a fairly low maintenance kid. He's had all of one ear infection, and just a handful of colds in his 2 and a half years.

However, recently, the nagging concerns we had at the back of our minds about his language development got pushed to the forefront. At two and a half, Luke has a very small vocabulary. He can repeat rote phrases like, "Where is it?" "Where'd it go?" "It's coming!" (referring to having to wait for Netflix to buffer his movie, fyi), but he is not putting words together on his own. Like "more milk" or "cookie, please!" He understands everything we say and can follow complex lists of instructions, so it doesn't seem to be a cognitive delay, but something is missing. We'd been cutting him a lot of slack...first because he was a boy and everyone assured us they developed speech slower. Secondly, at his two year well-check, the pediatrician assured us that it was probably because of Samuel's birth and that all the chaos at our house would probably slow him down or cause him to regress.

Now, though, 6 months later, he's still only adding a few words a month and seems to be making very, very slow progress. So, with our connections with Early Intervention, we decided to get Luke evaluated for speech therapy. This morning, we had a routine hearing and vision screening done to rule out any physical issue that might be causing a delay. He passed with flying colors. Next week, we will have him evaluated by a therapy team and go from there.

While we were there, we decided to test Sam, as well. He did not pass his hearing test. Mostly because it appears that he has some fluid in his ears. This could be because of the recent upper respiratory gunk that is still lingering in his chest, so we will go back in a month or so to make sure. Children with DS have very small ear canals and it tends to be very hard to see the ear well. He passed his hearing test as a newborn, and shows no apparent signs of hearing issues, so we are banking on the fluid issue for now.

Did you know that about 75% of children with DS have some form of hearing loss? And about 60% also have issues with their vision.

I'm glad to see this Monday end, but I know this process we started for Luke is a good thing, even if it makes my schedule just that much more insane. I'm still working on figuring out how to balance and juggle all these different balls, but I'm finding that they are at least rubber balls and they don't mind being dropped every once and a while.

And now your contractually obligated picture of Sam.

As always, check out NDSS and DSI for ideas about how to celebrate World Down Syndrome Day, March 21st!


  1. Rubber balls that don't mind being dropped once in a while! Perfect description!

    My best to you guys on all you're moving forward with for both children. I know it can be daunting.

    I hope the time out of the house at work goes well, even if it does make the schedule that much crazier!

  2. I have twin cousins who are DS boys. They had a wonderful, dedicated mother, like you, and now they are in their 20s and doing well. George and Gordan are the center of my cousin Webb's life. They grew up in West Monroe, LA, and had the blessing of a great school. Myra, their mom, saw to it that every available program was provided to help with their development and care. So, Sweet Pea, you keep on keeping on. Your life will be blessed as well.