Oodles of Appointments for Poodles. Oye!

Let me first start out by putting your mind at ease and saying that Wes is doing great... he's healthy, gaining weight and sleeping very well at night. However, we're seeing a few things that are mildly alarming, especially when you put things into perspective.

Down syndrome perspective.

Many children with Down syndrome are born with various "defects" {horrible wording} which can be fixed by the glory of modern medicine. Heart, gastrointestinal, kidney... but again, these issues can happen to typical children too. "Our kids", well, they are just more apt to have mild to sometimes severe health concerns. Fortunately for parents in "our community", we know ahead of time. We pretty much have that crystal ball thing down. I know Wes has a 1 in 100 chance of getting Leukemia. Scary? Certainly. A surprise if it happens? Not really - mental preparedness is my game.

Paranoia is not.

Maybe I should be a little more paranoid, but the way I see it - getting all worked up about something will not make whatever health concern little man has go away.  I mean, if I keep cool, Wes is cool. He feeds off of my worry and I know that if I can control my emotions, he can stay chill for his appointments, etc. {However, this is where sleep walking on my part sets in... I'm OK with that. Just make sure to hide any and all keys. Food too. Maybe credit cards... the cats - I have accidentally launched the cats... anyways}

To combat paranoia, I keep on top of things. {Well, I try to...}

I spoke with my good friend Diane today - you may know her - the awesome face behind the IDSC? Well, I talked to her about my doctor's appointment for Wessie today {I'm getting there, promise} and she was surprised by something... Wes never had an echo or EKG. Yea, never. Well, I lie, he HAD one the day after I found out Wes had a 1 in 4 chance of having Down syndrome - while I was 18 weeks pregnant. At the time his heart looked fabulous! But after he was born, nothing. Nada. The murmur disappeared in 24 hours and the only thing done for Wes was listening to his heart with a stethoscope.

"Adrienne, it's protocol for Wes to have his heart checked"

Man.

Until today I was living in my little happy Down syndrome bubble. You know, the bubble where nothing can harm you - no words, no health concerns, etc.

Well, except Wayne Brady who compared the one comedian to what Trig Palin will grow up to look like and the DB, no-name comic that used the term "Mongoloid child" on the Roast of Roseanne Barr. {Sorry Erin! I know you despise that word!}

YO WAYNE, WANNA BUY SOME BRACELETS AND REDEEM YOURSELF?

Honestly, I am surprised I haven't heard anything from Jane Lynch since she was the host. You know, being on Glee, having a sister, Cheerio and soon-to-be baby girl with Down syndrome on the show. You know, minor details. Episode "Cheesus Christ" talking to your sister on the show..."When you were a little girl, I couldn't protect you from the word". Yea. That's why I am a major B to anyone who says the R word, etc. I don't care what anyone thinks of me... {That episode made me cry... just sayin'}

I digress...

So, the point is {Yes, honey - I'm getting there} - I need to be proactive.

If I'm not, who is?


...

The low down...

Wes, since probably a month old, has been making this noise - like "swoop! swoop!" out of no where. We brushed it off as simply acid reflux, and we took care of it. The reflux is better and Wes is able to eat like a sumo wrestler, but the "swooping" did not stop.

It got worse.

About a week ago, John and I went to Hopewell Furnace for a little outing with Wes before it got hot. I made sure to keep Wes away from the smoking coal pit (WTH?), and kept him cool since it was bound to be a humid day. We were only there for about an hour - it was around 10am when it started - he just couldn't catch his breath! It was terrifying to say the least. I held him and calmly told him he was alright, but it just persisted and was followed by tears. He began to get grouchy and maybe a bit panicked.

I was getting panicked as well. Miss Cool as a Cucumber over here had to keep her composure. The only way to do that was to sit in the backseat with Wes and hold his hand.

He soon fell asleep, but I couldn't keep my eyes off of him my whole way home.

The day after it happened again. This time as the grocery store. I documented it on video, but unfortunately I am unable to get it from my Facebook to blogger.

That day I went to the pediatrician {after much prodding from the Ds community} and they hooked Wes up to an O2 monitor. What they saw that that he was ranging between 89-93 O2 level. What he should be is 95 or higher. {I could only imagine how this effects his O2 level when he has one of his episodes.}

 Can I just say, Thank GOD for the Ds community!

In any event, doc said that I need to make an appointment with the ENT as soon as possible. So yesterday was finally able to get in touch with the nurses at CHOP on the phone. While on the phone Wes had an episode.

His skin turned blue below his lip.

Scary. But I didn't panic. {What's up with that BTW? Don't all mom's panic? Why don't I? I'm not cold or disinterested - I swear.}

I told the nurse what was happening and she said that if he shows signs of distress, go to the ER immediately. Fortunately, we did not have to go.

...

Today, Wes had his appointment and he was scoped. Not sure if you've ever experienced this, but the scope goes down the nose and into the throat. Obviously, Wes was not happy but it was a good thing to do. The doc noticed that Wes has some inflammation, which is pretty normal for a baby with reflux.

However.

Due to Wes's unexplained color change, and periods when he does not breathe, we've been set up for a few appointments.

Cardiologist...

Gastrointerologist...

Sleep study at CHOP...

Keep Poodles in your thoughts. Thanks =)