Welcome to Holland

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.



I absolutely adore Holland and wouldn't want anything else=)

Romy's Beat of the Day

Romy's not really into watching television, but there is one exception, Yo Gabba Gabba. As my sister puts it, it's like crack for toddlers. I wouldn't say she's addicted to the show but it's the only show that holds her attention for longer than 5 seconds, specifically "Biz's Beat of the Day." She just thinks he's the greatest, she even beat boxes right along with him, it's so funny!


Here's what she's watching:




Here's her reaction to it:



What a funny little goofball!

Happy Halloween!

DAFO's, MRI's, GI Study's and Rainbow Shave Ice

Today was a big day for Romy. She got fitted for her first pair of DAFO's! For those who don't know, they're ankle braces to help her learn proper foot positioning which in turn will help her stand and dare I say it....walk! When most people think of leg braces they think of the movie scene in Forrest Gump when he's running away from bullies and metal goes flying from his robotic looking braces. Romy's are mid calf and hard plastic with foam insoles and they just happen to be bright purple with lime green polka dots. We should receive them in 2 or 3 weeks. We're sooo excited!

We also saw Romy's neurologist today, we went over Romy's MRI results and he said it pretty much looks like a typical preemie's brain. No sign of a stroke which is wonderful, WONDERFUL news. There was PVL (Periventricular Leukomalacia) which no doubt caused her Cerebral Palsy. It's a pretty common occurrence in micro-preemies. He wasn't too concerned about her developing seizures which can be common in kids with CP. If she hasn't had a seizure by now, then she most likely won't start. We also talked about Botox. Ya see, the first time Romy had Botox was this past May. The results were pretty incredible so we were all about doing them again when the effects wore off. So, she had another round in August, the results were pretty disappointing. There wasn't much of a change and the small change we did see lasted a meager 2 weeks. She'll get another round a month from now and the dosage will be a bit higher this time around. The Doctor also wants to try Baclofen. Baclofen is a non-narcotic muscle relaxer that's taken by mouth. There's a Baclofen Pump too, but Romy is too small and too young to get one at the moment, not to mention we're still unsure of such an invasive treatment. The thing is, it will relax not only her spastic leg muscles, but ALL of her muscles, even those not affected by CP. We're gonnna give it a test drive, if it makes her really sleepy or too "loose" than we'll pull her off of it and think of another treatment. We pick up the meds in 2 days.

Romy's primary care doctor (whom we love!) showed Romy's upper GI video to a Gastro doctor. She's thinking that maybe, just maybe, Romy has some silent aspiration going on. Perhaps the acid in her stomach is rising and pushing her food upwards and causing pain and or a sensation of fullness, and it could be dangerously depositing fluid into her lungs. Before we move forward with a g-tube, she's suggested trying some Prevacid for a month to see if has any effect on Romy's eating. We start that today, and she has another swallow study tomorrow, so I'll let you know how it goes.

Speaking of eating, I don't wanna jinx it, but Romy has been doing pretty good in the eating department for the past few days. We get through most meals without any stress and she's eager to try new things. She has a very odd palette for an almost two year old. She loves cucumbers with vinegar (you the ones that come with sushi?) and baked sweet potato fries seem to be a staple in her diet, and she can't get enough of salt-n-vinegar potato chips...gross. She also loves typical toddler food like chicken nuggets and mac-n-cheese. She feeds herself anything she can pick up, I think I'll introduce her to using utensils soon.

The three of us went to the North Shore yesterday and ate shrimp on the beach and played in the sand a little bit then, had the world famous shave ice from Matsumoto's, yes it's SHAVE ice, not SHAVED ice, don't ask because I don't know, but, I'm happy to report that she ate more food than sand this time around.

Pouty Baby -EDIT-

Romy is almost always cranky after her nap. It takes her a solid 15 minutes to fully "wake up" and start being the lovable silly girl that she is. She'll just whine and cry and refuse to be left alone. Her sad face is truly heart breaking. Don't believe me? Have a look.....




Teddy Grahams make her feel better =)



Here's a few more pictures, can you tell how much she's enjoying her cheese puff?




*EDIT*
Romy also had a well baby visit today. It was a VERY late 18 month well baby...whoops. She wasn't due for any immunizations and she sees doctor's at least 3 times a month so I wasn't too concerned. She did get an RSV shot though. I really thought she wouldn't have to get them this year, but better safe than sorry. She clocked in at 16 pounds 12 ounces (yup, she's losing weight) and 29.5 inches long. She's actually on the chart for her adjusted age for height, the 5-10th percintile to be exact, (woo hoo!) but nowhere near it for weight or head circumference. I figure, at least she's getting taller. Romy's pretty much famous at the pediatric office. She's known exclusively as "the pretty baby with glasses."

She also had speech therapy yesterday. Her therapists thinks she's doing pretty good. She says that Romy can clearly understand (simple) directions, for example; put the ball in the bucket, clap, give me a high five, kisses, hug, blow raspberries, growl like a lion and so on. She thinks Romy just doesn't realize that she too can request things and actually get them. So we're working on it. She said "Duck" for the first time yesterday. She pronounces it "uck" though. Cute, right?

Slow Esophageal Motility

That's what the GI study showed. Apparently food doesn't go down her throat as quickly as it should or with enough pressure, which in turn slows the entire digestion process down. Something's up with the muscles in there. Could be caused by her CP, which I think is most likely the case. They also want to check and make sure she doesn't have a hemangioma growing in there, remember when they were going to do that a year or so ago but decided against it? There might even be a chance that it was caused by the tear that happened when she was intubated for her eye surgery while still in the NICU. It's probably causing pain when she eats, hence the reason she doesn't eat much. Have you ever eaten too fast and gotten that heavy pressure in your chest? That's most likely what it feels like for her when she eats.

The plan for now is to see GI, and ENT docs, a feeding clinic and more than likely (nearly definite) placing a g-tube in her tummy.

I want to be angry about what Romy has to go through. I want to throw a fit, and honestly I think it would totally be valid. But, I can't. She's a funny, smart, charismatic little girl, it's hard to ask for much more than that. So I'll just ask for your thoughts and prayers instead. Thanks guys.



You MUST click to enlarge the picture so you can truly enjoy it!

My Little Love

Raymond got me a fancy new camera for my birthday, and I love it! I'm still getting the feel for it, but I took a few cute pictures of Romy. I can't believe how much she's grown! As we speak, she's sitting next to me, throwing graham crackers on the floor so that Sammy Boy will come over and eat them. This way she can yank on his fur. What a little monster!

My new favorite picture, she's an angel! Well, most of the time.


I love her laugh, it's infectious.


Romy, looking for something to wear, such a little woman!


Our poor sweet dog, Sammy Boy