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 =)

Happy Heart Day, Isabella!

While pregnant with Wes, I made many connections in the Facebook and Baby Center Down syndrome communities. Some parents were veterans of Down syndrome, while others were young, fearfully excited mom's to be just like me!

Brittany was one of those fearfully excited mom's that I met on a Baby Center board in January. She shared the news of her prenatal diagnosis how she found out that her daughter, Isabella, had Down syndrome. I was so drawn to Brittany, her story and her love for her unborn daughter, I just had to reach out to her. 

Expecting a child with special needs can be a scary experience. Scary because of the intense love for that child and the need to do anything possibly for that child to thrive. The first question that arises is, "Is my baby healthy." That question out trumps any fears of future plans you may have for your child. {You soon learn that these "plans" cause unrealistic expectations for ANY child. Damaging.}  During our pregnancies, we both had our emotional ups and downs regarding the health of our children. Though we were both ever exciting about becoming moms (#2 for Brittany), we were still scared of the unknown. The fears of heart surgery for Isabella, and possible surgery due to Hirschsprung's for Wes (he ended up not needing), kept us nervous and on our toes. However nervous we both were, it was beyond comforting knowing that we were just one message away from each other. 

The morning that I had Wes, it was a flutter of updates and messages to family and friends. I was excited enough that Wes shared the same birthday as my dear friend Erin, momma to Grady, but then I got news that Brittany gave birth to Isabella that same day! Let me just say that April 23rd is quite the lucky day for us all!

This leads us to where we are today...

Little Miss Isabella had her heart surgery on Friday. Wes wanted Isabella to know that he was thinking about her, so he asked me to help him write her a message. {I think Wes has a little crush - she sure is a beautiful little girl!}

To keep up on Brittany and Isabella, check out her blog. She's been updating us on Isabella's recovery like a mad woman... like a momma in love with her little girl...

Physical Therapy Phun #1

We've been working on physical therapy for awhile with Wes, but until recently it hasn't been anything "crazy".  For those of you with infants with Ds, or any infant for that fact, here are some exercises that we've learned from our PT and the Gross Motor Skills for Children with Down Syndrome book that are worth checking out. There are also other PT exercises we do for his neck, but that is to loosen mild tightness due to the old way in which we fed Wes.

Yay! It's therapy time! Therapy time is fun (when it's with mom and dad) because we get to play!

During therapy, Mommy started holding my arms under my body because tummy time became really tough for me. So tough, that I starting to fall asleep. I don't know - I can't remember? Anyway, the book told her that it was a good idea to hold my arms to increase my strength.

When Mommy let's my arms go, I tumble over like a tree!

Uh-oh!

Yikes!

Another thing Mommy and Daddy like to do is sit me on the couch. The move my bootie so it touches the back, though I try and scooch down when they're not looking. (I don't really like sitting up yet.) Daddy read that this helps me strengthen my core and my neck at the same time! In this picture, Daddy is making funny faces at me so that I look up at him and don't drop my chin.

Daddy, you're so funny!

Can we stop now?

The best part of therapy is getting kisses from Mom and Dad. They want me to know how awesome I am doing!

The next therapy that we do is side lying. I don't like this too much when I do it on the floor on blankets. This feels pretty good on the couch! My parents want me to reach out to them or to a toy... I personally prefer to eat Percy's face off.

Finally we do shoulder lifts. Some parents like to pull their babies by the arms and  lift them up, but I need to build up strength first. Mommy says that Hypotonia stinks like a dirty diaper. I don't know what Hypotonia is, but I'd rather not smell it!

Mommy and Daddy say that they're so proud of me every time I do therapy. It makes me feel special. I love it when they say, "Yay, Wessie!" It makes me feel like a rock star!

To thank my parents for therapy, I quickly messed my diaper and the goods went up my back, down my legs and into my toes. I even peed on Mommy! (Shh! So funny!) At least I got a bath! Boy, I love baths!

Until next time!

XOXO Wessie Poo (literally!)

Friends, Tiny and Tall

This past weekend I had the opportunity to catch up with my {new and dear} friend, Erin. Erin and I are both graduates from the same high school and practically grew up next door to one another, but never "hung out" as teens. Not until I learned about Wes's diagnosis did I reach out to Erin {though I stalked her blog like crazy!}

Here are some cute pics from this weekend....

Erin, Wes & Baby June-Bug

Me and Grady

Love <3 !

Photo credits to Erin Witkowski and her lovely iPhone!

We've got a whole lotta love going on here! 

{MIA from the pics are Paul (daddo-o) & Mason (Grady's big bro)

Ski'ing Through Life

Losing Patients with Society {All You Need Is Love}

Losing patients with society

I am very upset today for reasons everyone can relate with one way or another. I hope that this is the last time I think of this issue, or talk of this issue, for awhile.  The issue I speak of is regarding the institution of chicken and God. Yes, you know what I am referring to.  

This is a rather hot topic, and I by no means write this entry in attempt to stir up controversy, but to speak from my heart with all the fairness I can give to both parties.

The owner of chicken and God has every right to state his opinion of gay marriage, I agree.  It’s kind of humorous that someone would ask him this question in the first place. My good friend, Erin stated, “What do you expect the answer to be when asked, “Do you believe in gay marriage” to a devout Christian who owns a business that is closed on Sundays?” I agree, absolutely. That’s setting the stage for controversy.

However obvious the answer was, I feel as if openly discussing this controversial topic has indeed formed a separation between those for and against this civil liberty (ahem). This, I do not blame on the owner of chicken and God whatsoever. It’s the reporter looking to stir the pot, and guess what? You’ve made your news story. Bravo.

I have to say, I love the food at chicken and God like most people who’ve had the opportunity to eat there. The service is excellent and the employees appear to be genuinely happy. And the sauce; don’t get me started on the sauce… However, there are consequences to every action that is openly stated by someone of great power and influence. Though what the owner said was not wrong (by his moral views), it has brought many people out of the woodworks who are not just supporting his right to have this opinion, or to support his Christian values, but those who have been hiding behind a veil of hate; those who have been waiting for this moment to make others of non-traditional families feel isolated and practitioners of sin.

It’s brought out the ugly in people.

The rally yesterday was my breaking point. Not only were the unyielding Spacebook statuses and pictures an annoyance, but a slap in the face to brothers and sisters of the human race.  The endless lines that wrapped around chicken and God were seen as unwavering middle fingers to those of non-traditional families. The one “safe” time that people against equality had the chance to voice their opinion. Yes, you have the right not to believe in gay marriage, but to openly display this opinion was a sign of lacking discernment (another term from my dear Christian friend, Erin).

 I too lacked discernment for a short while in my absolute rage from this action. I also fired back on Spacebook for those who openly stated their support for chicken and God. It is fine that you have your opinion, but I don’t want to see their logo on my feed. For example, I do not believe in abortion, but if I put that on my feed and you strongly disagreed, would you be happy? I don’t think so. I respect my friends enough to be mindful of their feelings. I also respect them enough to not judge them for their decision. Getting back to my lack of discernment, for that, I am mildly ashamed. I am ashamed that I stooped to that level of judgment, or lack thereof. I find it to be a hurtful and offensive towards amazing families and individuals, who happen to be gay, that I’ve come to know or know of. I hurt for the mommies in my Ds community of little Eli that just passed yesterday. I hurt of Jaidin’s mommies because they are excellent parents to that little boy. Jaidin too, has Ds. They do more for his care and wellbeing than many traditional families.

I am not saying that those who agree with the owner of chicken and God are people of hate – not at all. But the message that action has made to those who are not like them was heartbreakingly unnecessary. I just hope that priest, pastors, and other with similar power do not acknowledge the rally this Sunday as an act of honor. There is no honor in rallying against a fellow human being, regardless of if you agree with them or not.

 People fear what is different. People fear what is not in accordance to their religious belief.  The unknown can be scary for some. I get it. But, we’re in a world filled with people who are different. Does that make who they are bad? Not at all.

To tie this into the purpose of my blog, it made me not only think of the numerous people I personally know who are gay, but also Wes. Wes is different too.  Even before the understanding of my son’s diagnosis, I was a lover of all mankind. I may not have understood it, or relate personally, but who am I to judge what is right and wrong?  This act, this rally, to those who participated was a sign of solidarity. A sign that they support what chicken and God stands for. However, to those on the outside it was seen as a thick concrete wall erected to further segregate humankind.

Can’t we all just get along? Can't we all just love one another for our differences?