Lungs of a preemie.....sigh.....

As I mentioned in previous posts, Romy has been sick lately. It seemed to be clearing up but today she took a nose dive. Her low grade fever returned and wheezing came with it. She's been having coughing fits on and off for a few days now.

Anyway, I took her to the local clinic and x-rays confirmed pneumonia. Blasted pneumonia! Sometimes I forget that Romy, like all micro preemies, has Bronchopulmonary Dyplasia and that her prematurity has left her with crappy lungs. Sure, she'll most likely outgrow most of it, but for now she's stuck with them. A small cold can turn into so much more so quickly. Asthma? It very well could be in her future. Although, Romy's lungs are actually not nearly as bad as many other micro preemies, as she's never had to be hospitalized after leaving the NICU and that's such a huge blessing.

So, for now she's on antibiotics and breathing treatments. If any one of you guys saw her, you wouldn't even know that she's sick other than her wheezing. She's still the happy, playful Romy. She's eating a little less, but she's eating.


Does this look like the face of a sick kiddo???

Hooray for breathing treatments!!!

Standing Tall

Romy got her DAFO's in yesterday! She tolerates them okay and they really help get her feet straight. She also got fitted for a custom stander that we should receive in January or February.

This is what they look like:

And this is what they help her do:

It's Saturday so Daddy's forcing us to watch College football all day.....yuck.

It's weird seeing her stand upright like that. Usually her feet are turned inward so much that she's practically crossing her legs.

The Schuck's LOVE the North Shore

Ray had the day off today so we packed up the car and headed up to the North Shore. It's easily becoming our favorite place. This time of year the waves are HUGE! I'm talking 20-25 feet!  We ate lunch on the beach and then watched a surfing competition. It's SO beautiful up there! The surf was way too rough to actually swim in so we just sunbathed and enjoyed the view. Romy loves the sand. She'll play in it for hours if we let her.  It was such a fun day.

Romy had an eye appointment the other day. No change in her vision and the doctor believes the difference in pupil size can be attributed to her cerebral palsy. She doesn't seem to be too concerned about it. She does however, think Romy would benefit from strabismus surgery. It will probably take place sometime in May or June. It may take more than one surgery but we're hopeful that it won't. It's considered minor surgery and she'll be in and out on the same day. 

That's all the news for the time being! My brother and Ray's brother will be here in the next few weeks followed by Ray's sister and the rest of his family. Kris, Ray's brother-in-law, will also be home from Iraq for the holidays. We're excited to be surrounded by family again and can't wait to show off Romy and all her new tricks.

    
The wind was blowing so hard, she was having a trouble keeping her balance!

2009 Van's Triple Crown Surfing Competition. Surfing is hard, but these guys made it look easy!

Just a Girl and her Dad.

So I understand that every child goes through separation anxiety, but I think Romy is having an excessively long bout of it, not to mention it's SEVERE. Separation anxiety is actually a milestone, and for that I am thankful, but DAMN. If she can't see me, Ray or my sister, she has a complete meltdown. She thrashes around, screams, kicks and cries. That being said, it's ten times worse when Ray walks away. She can't stand being away from her Daddy. From the time he walks in the door to the time she goes to sleep, she's attached to his hip. Poor guy can't get anything done. When he leaves for work it takes her a solid 30 minutes to calm down. It's gotten to the point that when he comes home for lunch, he has to sneak around like a ninja and eat far away so she doesn't see him and lose it when he has to leave 20 minutes later.  Anybody have some advice on how to break this cycle? My ears hurt and my arms ache. HELP!

Anyway, other than that Romy is doing some great things. She's already sitting up but now she's getting thisclose to getting from a lying position to sitting all by herself! She also has a few new words. "Bash" for bath, "go", "ilk" for milk, and "dawwwwl" for doll. Granted she only repeats them and rarely uses them without prodding, but it's still a good sign. She also tells me "Ahhhhhh" and shoves food in MY mouth, I guess that's what I get for constantly fighting with her to eat. At least I know she's understanding a lot of what I say. She's also beginning to understand the concept of puzzles and lots of her other toys. She's actually playing with them appropriately instead of just throwing them, banging on them or pulling them apart like she used to do. Romy can also identify her face and her hair, and sometimes her tummy. Yet, the coolest new thing she does is dance! When she hears music, she perks up throws her hands in the air and waves them around.  She has killer jazz hands. I'll post a video sometime.

With that said, I'm still having a hard time getting her to hold her sippy cup and use a spoon. She's physically capable, she just won't do it. I think I'll just let her lead the way as it's hard enough to get her to eat without utensils.

So overall, she's doing great! I can't wait to see what she'll do next.



                                        Thanksgiving Day 2008

                                      Thanksgiving Day 2009

Daddy, the Barbarian

Cutest beach bunny I know.

I can't get enough of that smile!

Thank You.

Thanksgiving Day is only a few hours away and tomorrow is going to be a busy day of cooking, laughing, and a glass (or 5) of champagne so I don't know if I'll get around to posting. So here I am thinking of the many things that I am thankful for.

I am thankful that, in these trying economic times, my husband has a stable job that provides for us. We're nowhere near rich, but by richness in love, we are practically billionaires.

I am truly blessed with the greatest family on earth.  Not just my own family, but the family I grew up with, my in-laws and my extended family.

I am thankful for my renewed faith in the Lord. I can thank Romy for that one.

Speaking of Romy, I have many thanks in that department. I am thankful for her laugh, her smile, her cuddles and kisses. I am thankful for her little hands holding a brush and running it through my hair. I am thankful for those hands picking up food from her tray and feeding me. I am thankful for that independent and loving personality of hers. And as odd as it sounds, I am thankful for her cerebral palsy. Romy wouldn't be Romy without it.

With thanks always comes reflection. As Romy gets older, I notice and realize things about the situations she will face as she grows. Romy will forever be labled "special needs," it's not a title that can ever be erased, but I pray that she'll grow up to embrace it as I have. She has a unique opportunity to do some good in the world. I hope one day she can become an advocate for children like her.

Growing up, I was never one to tease or make fun of special needs people, but I did something worse. I completely ignored them.  At the time, I thought I was being nice. I figured they didn't want to be stared at or fussed over. How completely ignorant of me.  It would break my heart if people just completely ignore Romy. So I urge you, if you happen to see someone in a wheelchair, using braces or crutches, or maybe with a different walk, instead of staring past them, just smile, a quick hello perhaps. Just don't ignore them.

I am so VERY thankful for these two, and the sweet bond they share.

I am so VERY thankful that I get to stare at this face forever!

Full Blown Toddlerhood

Romy now spits food out. I'll feed her off of a spoon, she'll eagerly open her mouth, close her lips, make a few chewing motions, open her mouth and let the food slide off her tongue. She thinks it's hilarious. You know what I think is hilarious? This picture of Romy pooping on herself. Ha, take that Romy!

Give Water

Did you know that 4500 children die everyday from drinking contaminated water? Nearly all of these kids are from developing nations. Isn't it insane that kids DIE from not having something as simple as clean water. Did you also know that 10 dollars will buy someone clean water for 10 years? YEARS!!! Click the button below to learn more or donate. Thanks guys!