Sneak Attack

Tue, 23 Feb 2010 20:47:34 -0700

I can’t turn around for too long without the little destroyer finding something to get into! If only he liked putting stuff back and much as he loves getting it out.

This is his new squinty eyed “ooh” face. He gets such a kick out of himself!

Seriously?!

Sun, 14 Feb 2010 20:15:24 -0700

I’m not sure why they call it a “sleep” study when really no one is sleeping all that much.

Myles’ sleep study was almost two weeks ago now and it was pretty horrible for both him and I. This picture doesn’t even do justice to all the crazy stuff he is hooked up to. His feet, legs, stomach, arms, face, and head were covered with some sort of monitor or another. This was our second sleep study, and although the first wasn’t a walk on the beach either, he was only 9 months old and a whole lot less mobile. This time, the poor kid couldn’t even roll around, or sleep on his stomach (as he always does) because of the wires and giant electrical box in his crib.

The study started at 7:00PM, and lights out were at 9:00PM, giving 2 hours for paperwork and setup. At 1:30AM, Myles had slept a total of about 42 seconds, so the sleep tech guy came in and asked if I wanted to end the study. Um, I was not going to take the chance that they’d make me reschedule, so I told him no. He turned the lights on and droned on and on about how hard this is for some kids. At one point he said, “The docs want a minimum of four hours of sleep, but we’ll take what we can get, especially when we’re working with downs.” What!

Being that it was 1:30AM, I bit my tongue and just asked him to turn the lights off and leave so I could work on getting Myles to sleep. In my sleep deprived state I thought many horrible things about this man and his comment. As if having Down syndrome is the reason Myles can’t sleep with a bazillion electrodes on his body and socks taped over his hands? Like a typical 18 month old would have no trouble sleeping while wrapped up as a total mummy? Ugh. Please don’t work in pediatric medicine if you’re going to stereotype kids and insult parents. And while on the topic, friends, please don’t use the term “downs” when referring to a person with Down syndrome. It’s hard to explain, but most of us parents who actually have kids with Down syndrome take offense to it.

I’ll climb off my soapbox now.

Myles got a total of 3 hours and 45 minutes of sleep and I think I had maybe 1 1/2 hours. With the study over at 6:00AM we jetted out as soon as possible.

Myles had an ENT appointment a week later to go over the results, and to spare you all the boring details, his sleep apnea is slightly better, and he will grow out of it, but they still prefer for him to be on oxygen at night. I fervently explained how difficult it is to get oxygen on him every night and actually have him keep it in for any period of time, but I’m pretty sure they don’t care. As the doctor said, “If he wears it, great, if not, I guess that’s okay.” Awesome, thanks for clearing that up.

Part of me hates to post this rather negative blog because I don’t want it to reflect negatively on Myles or Down syndrome. It’s true that along with a diagnosis of Down syndrome comes an elevated risk of some medical complications, but there seems to be a misconception that people with Down syndrome inevitably suffer from serious medical problems. In the vast majority of cases, this simply isn’t true. Apart from having a heart defect (which is now totally taken care of) and having a slightly narrow airway (leading to sleep apnea), Myles is so healthy. He has never had a temperature over 99, never had an ear infection, never had the flu or even a common cold. He’s generally healthier than most other babies and toddlers that I know, DS or not. And he definitely loves life more than most!

Myles Walking

Tue, 2 Feb 2010 15:24:30 -0700

Check out this video of Myles walking! The significance of 15 feet is that it was his next objective physical therapy goal. Enjoy!

Myles Walking

We’re still here!

Thu, 28 Jan 2010 21:22:40 -0700

Sorry for the blogging hiatus. I know you grandmas are just waiting to let me have it! I don’t have a good excuse, other than chasing a busy toddler around!

As for Myles, here are the highlights...
- Just shy of 18 months old, 19 lbs. [25th percentile], and 28 inches.
- Three teeth, 2 top front and 1 bottom front [next to the one that fell out :( ].
- Into everything! Loves exploring and playing.
- Laughs out loud a lot with the sweetest giggle.
- Loves reading and will bring us book after book to read to him.
- Walking! He’s been taking steps for a couple months, but can now do about 10 feet or so before needing to regain his balance. Making such good progress that he was recently videotaped for a physical therapy training video.
- Goes to speech therapy once a week and physical therapy once a month. Loves both.
- Signs “milk” with great consistency and understands other signs.
- Follows the dog around the house yelling “Dah!”
- Says “dada” nonstop, hasn’t quite mastered the “mama.”
- Drinks well from a straw cup. Still gives us a hard time about eating and has his up and down days.
- Healthwise he is doing awesome. No seasonal colds, flus, or earaches. He just had a cardiology appointment and was cleared to go a full year before coming back. He has a sleep study next week to check if he still has sleep apnea. We’re really hoping for good news and NO MORE oxygen!

Myles continues to be a joy to all who know him. He is really coming into his personality, and although he has his cranky times and can show us some attitude, he always has a smile and really is as sweet as ever.

As for us...we’re expecting! Baby #2 is due July 24, 2010, just one week shy of Myles’ second birthday. I take back what I said before, this is my excuse for not blogging. The overwhelming exhaustion that has accompanied this pregnancy has kept me from doing lots of well intentioned things (like mailing out the Christmas letter I actually did write).

Thanks for reading! For new pics, check out the Winter 2009-2010 on Myles’ page.

Um, Tooth Fairy?

Mon, 23 Nov 2009 20:10:25 -0700

Not quite 16 months old and Myles managed to knock out his one and only tooth. Yup, that’s right...

Yesterday morning, everyone still in bed, we heard Myles wake up and start to play in his crib as usual. Next thing we knew, he was crying in pain. I got there first only to see his mouth pooling with blood. We had him suck on wet washcloths until the bleeding slowed down, at which point I saw a dark spot on his gum where his tooth used to be. Poor little unsuspecting tooth. We found it on the bedroom floor. Best we can tell, Myles, standing in his crib, bit down on the railing and probably fell backward. The tooth just popped out.

After many tears (mostly mine, Myles was fine about 3 minutes after the incident), and calls to the pediatrician and dentist, the fiasco was over and he is none the worse for wear. We see the dentist tomorrow to make sure he didn’t cause any further damage.

I keep being reminded that more teeth will come in, but still, it was his first and only. I’m still not quite over it. Never a dull moment around here!