Oh My How Time Flies!

My baby girl is less "baby" everyday. Oh how I love you my sweet Romy!

Enough Already

Recently, a fellow blogger mom of a kid with special needs posted about the word 'retard' and peoples reaction to it. It's really insightful and you should all read it here. Most people commented something positive, some didn't realize how hurtful the word is, and others vehemently defended their use of the word.

Let's get one thing straight- I, as a mother of a child who may or may not eventually receive this diagnosis, cannot STAND the way the word is used nowadays. 

The term mentally retarded is a medical diagnosis and has been gravitating toward being called intellectually disabled as of late. It's the process that has happened with words like, 'idiot', which at one time was a legitimate medical term for someone with below average intelligence. However, like the word retard or retarded, it's become a slang word to describe something dumb, stupid, or ugly. People use it to describe something they don't like whether it be a policy, a person they don't like, or a t-shirt. It's no compliment, it's hurtful and offensive to those whom are afflicted with an actual mental disability and the people that love them. It has morphed into something far beyond anything you will find in a medical dictionary.

I think anyone would agree that it'd be in extremely poor taste to make fun of or mock a person with cancer or a burn victim, so why has it become okay to mock someone with a mental disability?

"Hey, Justine, what about free speech?  This is America after all." Alright I get it, free speech is wonderful thing and a huge part of what makes this country great. However, just because you CAN doesn't mean you should. Would I like to flip the bird to the kid who cut me off on the highway going 70? Absolutely, but I won't. Would I like to lash out at the bank teller who conveniently closes her window to go on break when I've been standing in line for 40 minutes? Oh boy, do I. Just because I could, doesn't mean I should. It boils down to respecting each other and treating each other like humans. Never mind the fact that by using the word retard or retarded is mocking a group of people who, many times, cannot defend themselves.

Some say that if we slowly ban the use of certain words, there will be no words left. This notion is laughable. Have you seen a dictionary? Have you seen the hundreds of thousands of words that are in it? Beyond that, it goes back to the respect thing.

Oh, and PUH-LEASE don't get me started on the people that slur their speech or twist their hand inwards and bang on their chest while simultaneously using the word 'retard' or 'retarded.' Physical disability isn't the same as mental disability and doesn't always go hand in hand. Again, have some decency.

Look, I know I'm not going to convince everyone to stop using the word, but I hope that I can change a few peoples views. 

Rant done.

I hope nobody ever says such hurtful things to her.

Genetics Madness

So we're back in genetics limbo. Her geneticist came by to visit while Romy was in the hospital and wants to reevaluate Romy for a  specific syndrome. Even though she has been previously cleared of said syndrome apparently there has been some new testing progression for it and he wants to go for it. Although, admittedly, she has a few of the characteristics but only has like 6 or 7 out of 25+ characteristics. All that she does have can be directly linked to her having Cerebral Palsy and/or her extreme prematurity. Oh and those God forsaken eyebrows! Romy's most unique facial feature (and my favorite) is causing so much uproar even though I saw for myself the same exact eyebrows on baby pictures of my Aunt. (Whom was healthy.) I know that he's just being cautious but man it's getting old. This will mark the 4th test for this syndrome. I'm hesitant to even name this syndrome because, well, she doesn't have it. I am not in denial, I'm just right. Even if for some extremely slim chance that she DOES have it. There is no cure and more importantly, it does not effect life span so why would I care either way? She could have 2 heads and it wouldn't matter.

Any Kiddo Need an iPad?

The awesome parents over at Marissa's Bunny are giving away 20 free iPads in a merit based giveaway for special needs kids. Just thought I'd pass it along!

I'm officially a g-tube Mom.

Yes, it's true, yesterday I joined the small group of Moms with a g-tube fed kiddo.

The surgery went well and the surgeon even went ahead and fixed Romy's outtie bellybutton while she was at it. Romy needed a bit of oxygen after the surgery while she was coming out of anesthesia and it was a little scary for a while but it only lasted about an hour. Romy was pretty miserable for the next 12 hours or so and refused to sleep anywhere but on top of me.  Needless to say neither one of us slept very well. The next morning she took liquids by mouth and then solids later in the day and did just fine.

We were originally supposed to stay through the weekend but Romy's such a rock star and did remarkably well so they discharged us a full day early! She's not on any medication except Tylenol every now and then. I can tell she's a little uncomfortable but she's handling it well and rarely complains although she does touch her tummy and say "owwie!" every now and then. As soon as we came home I fed her a little and put her to bed. I laid her down on her back (she's a tummy sleeper-always has been) and she promptly rolled over onto her freshly bandaged g-tube and bellybutton, winced, and fell right to sleep. I'm telling you, this girls pain tolerance is insane. I actually read an article about preemies having an exceptional tolerance for pain throughout childhood- interesting stuff.

So far she's only taken medication through her tube and we will continue to feed her by mouth until Thursday when we meet with her gastroenterologist and her surgeon again. They'd like to see the site a bit healed before we start.

Well thank you to everyone who sent warm wishes and prayers her way, I really do appreciate it more than you know!


Here are a few before and after pictures:

The night before surgery, showing off her biggest smile and her non-tubed tummy.

The day after surgery.

Tita Lisa came to visit everyday!

Romy is obsessed with my laptop. I never let her mess with it but gave in since she had such a rough day previously.