Romy, the amazing micro preemie!

Four Years of Lumpia

2011-11-25T09:35:00.002-10:00

So every year on Thanksgiving I've managed to get a picture of Romy eating lumpia (Filipino egg roll) and this year was no different. I hope you all had a wonderful Thanksgiving! I promise a real big update soon!

I kind of think she looks the same as last year. The biggest change seemed to happen between year 2 and 3.

Finally!

2011-09-19T03:13:00.002-10:00

I know. I know. I know. I am the worst blogger in the world. It's been a hectic couple of months, but things are starting to settle down and a routine has been established so you can expect more posts from now on.

Romy and I are doing great! I think a change of pace and scenery has been great for both of us. I wasn't thrilled to be moving back here, but I'm really glad I did. It's been nice to see old friends and family, many of whom have never met Romy. I think we're just happier in general here although I miss Hawaii like mad, especially my sister and her family. I'm also really missing her therapists and teachers, they truly loved Romy and I loved them for doing so. Tears were definitely shed.

Romy has adapted well to the move, it took a week or so to get her used to the 6 hour time difference, but other than that she's done extremely well. She actually started school today and guess what? No tears! Not a single one! She gave me a very pitiful sad face when I said bye, but she went right back to working on her puzzle the second I stepped out of the room.

As far as her development, she's chugging along. Her speech has improved and I'd say she's added on a few dozen words and is more consistent with stringing them together. She asks for things a lot more than she used to which is a huge change from just whining until I could figure out what it was she wanted. She's gotten stronger, especially her arms. She's been getting in the 4 point crawling position and rocking back and forth and even bunny hopping a little. I think she's trying very hard to crawl, but she still relies on scooting back and forth on her bum to get around.

Also..........drumroll........Romy got her iPad! The amazing (really they are SO amazing) folks over at Mission iPossible granted Romy and several other kids an iPad after the whole scam fiasco. This group of parents have worked their butts off to raise the money for families that they've never even met and it truly warms my heart to know that there are people who care just for the sake of caring. We've had it for about a month now and Romy is seriously a pro at working it. She absolutely loves it and literally asks for it withing 30 seconds of waking up in the morning. We've downloaded quite a few apps and we're looking into which app would be the best as far as augmenting her speech, (those things are pricey!) and I can tell how useful it will be to her as she gets older. It's all around wonderful for her fine motor skills and speech.

We have yet to meet all of Romy's doctor's, but the referrals are slowly trickling in. I don't know how much she weighs, but it doesn't seems as if she's gained an awful lot. She's so tiny you guys. Like REALLY small. I didn't fully understand until I held my friends son who's 15 months or so and he's not much shorter and definitely heavier. Also, when compared to her younger classmates, she's easily 4 inches shorter and at least 10 or 15 pounds lighter. I never expected her to be very big, but her size is starting to really worry me, especially because she's g-tube fed over 1000 calories a day on top of whatever she eats by mouth. Before we left Hawaii her doctor bumped her up to higher calorie formula and she seemed to gain a bit but is leveling out the same way she did on the regular formula. He seems to think her insanely fast metabolism just regulates itself quickly. We'll see what the folks at Chapel Hill think.

Well that's all I can really think of. I'll go ahead and post a ton of pictures for Romy's grandma's to enjoy.

This was taken right before we left Hawaii. One last shrimp truck stop! They like for customers to write on the tables and on the actual truck.

Lisa and sweet Chris giving his mama some love.

Love that laugh!

My cousin and his girlfriend came to visit before we left. Romy loved them!

Romy and her beloved iPad.

Auntie Niecey and Uncle Kris came to NC for a quick visit before they head off to Korea.

Combing her luscious locks, lol.

First day of school! I blurred out the name of her school for all you crazies on the internet.

This is the face she gives when I tell her to smile.

Rolling With the Punches

2011-07-11T17:06:00.003-10:00

This is a hard post to write, but I need to inform and vent a little bit. A few months ago, we were contacted by the folks over at Marissa's Bunny that Romy was 1 of 40 winners of an iPad, $500 dollars worth of apps, and a gift card to buy a case. We were so incredibly humbled and excited to be chosen for this wonderful gift and at his request, I eagerly posted a link for anyone to donate to Mike, Marissa's dad, so that he could continue to provide iPads for other special needs kid. I even forked over some money that I really didn't have because I felt so strongly about the cause. Family members of ours and even some of our readers did the same. We've been waiting patiently for this iPad and it seemed to hit a few stumbling blocks, but Mike emailed updates several times. First, the delays were due to legal issues with his lawyers and then with Apple and their lawyers. Then it was mistakes made by his employees that had things delayed even more. It was at this point I began to feel a little uneasy. I wasn't really understanding how so many mistakes and delays were made and the fact that a few of his emails were more than a little cryptic had me a bit suspicious. However I'm a pretty positive person and I choose to see the best in all people, I chalked it up to a bit of paranoia as Mike himself is a special needs parent and would never deceive other special needs parents. Right? He even said that 15 iPads were shipped, so at least some of us have received them by now, right?

Then came the kick in the gut. He claims that he received a threatening email from some anonymous person claiming to know very intricate details about him and his family as well as the company he works for and his, get this, extensive criminal record. The email wanted him to shut down all of the giveaways and donation buttons, which up to that point totaled 29k, or he would face an investigation. Mike informed us that his lawyers requested that he stop the giveaway until things could get cleared up. Cue special needs community unrest! The SN blogging community exploded. Nobody has received an iPad, or a clear, transparent reason why. Ellen, over at LoveThatMax posted about it that turned into a thread that included Mike himself. Check it out and be sure to read the comments. Even so, I kept mum and chose to wait it out and hang on to the hope of Mike being the honest man he seemed to be. Uhhhh, is there a cure for being too naive? Anyway, I just received what I'm assuming will be my last email with Mike. There are no iPads. The 15 that were sent? Never happened.. He claims it was a misstep from his secretive company. I say it smells awfully fishy 'round here.

I feel duped. Angry. Sad. Pissssssssssed. This is not about an iPad. It's about a guy who has a child with special needs and has been well liked and respected in the special needs community, completely getting 40 children and their families hopes up and had us feeling like FINALLY, someone cares, we won! And then he threw a brick in our face. We TRUSTED him, we liked him, and we felt a connection to him and his family over similar stories. We even emailed back and forth about living in Hawaii (he was in the Navy out here a decade or so ago) Where is this 29k now? I don't know. What happens next? I don't know. He claims he'll refund any money if requested, but frankly it's hard to believe him. So if any of you dear readers donated, I would request that you try to get your money back and I really pray that you will.

However, there is a small glimmer of hope. Two other supposed 'winners' have banded together to form Mission iPossible. Their goal is to set up a legitimate, completely transparent way to finish what was started. They want to get iPads out to the families that were promised one. Some families were pretty severely affected by this, one child even got put at the very bottom of a communication therapy list because of his 'winning an iPad.' They're in the midst of establishing a non-profit organization as a 501k with the IRS to make this fully legit. You can read about it from Kenneth over at Blogzilly. I'll continue to update on how all of this plays out.

I'm so deeply and truly sorry to any of my friends, family, or readers that I sent over to Mike's blog to donate. I really should have checked it out more thoroughly, and that is completely my fault. I really do hope that this gets sorted out and that money is given back.

On another note. We're all packed. Our house is gone and Romy and I will be flying outta paradise in a few weeks. It's stressful and extremely sad, but I'm looking forward to the future.

Going Private

2011-06-21T09:42:00.000-10:00

I'll be making our blog private in the next few weeks, message me or comment and I'll add you. Hope everyone is doing well!

A Great (GASP!) Developmental Appointment

2011-06-03T12:07:00.001-10:00

I usually dread taking Romy to her developmental assessment appointments. They're usually filled will not-so-great findings and 'Debbie Downer' attitudes. However, this time it went fantastic. We saw a new doctor and it was nice to get a fresh perspective on things, and for someone who can see Romy for what she's doing NOW versus what she wasn't doing before. Anyway, he did a few short tests and exercises with her, many that she did at the beginning of the year at school for her entrance into preschool. She did pretty fantastic, much better than she did in January. Most of it was picture identifying and just asking her questions and stuff like that. He was really impressed with her language receptive skills (understanding), and was pleased with the progress she's made in her expressive skills. The final verdict was that yes, she is still delayed, but is considered borderline rather than mildly delayed as she was before. Borderline meaning she's not far off at all from the average range. Altogether pretty impressive for a former micro preemie with cerebral palsy. He even thinks she might have done better if her motor skills were up to par. If Romy keeps on progressing at the rate she's going, she could very well drop the borderline label as well. Hopefully she'll keep on progressing and not have any major setbacks. Her biggest obstacles seem to be her motor issues (obviously) and her expressive speech, but even those are improving some. Will she ever catch up completely cognitively, walk, or speak fully functionally? I don't know, but either way, I'm okay with it. She seems to be extremely happy and functions really well for the most part, and that's all that really matters at this point.

We also saw her neurologist for the last time before we leave. We talked about the baclofen pump that she's approved for, but since we'll have access to Duke's Children's Hospital when we move we're just going to wait to see what they have to say since they may recommend a rhizotomy instead. She also got fitted for new AFO's.

We've got a few more appointments this month and we are outta here in July!

Here's a quick video of Romy spelling her name. For some reason she says the number 1 and the letter R the same. She didn't want anything to do with at first, but eventually complied. Is she a smarty pants or what?

A Big 'Ol Romy Update

2011-05-27T21:39:00.000-10:00

Romy has had a lot of stuff going on lately, she's a very busy little girl! I haven't updated on her progress in a while so this might be a long post.

A few months ago my brother turned Romy's crib into a toddler bed. She's done great with it! She still can't get in and out on her own and has fallen out a few times but it hasn't phased her much at all. I guess it helps that the bed is only a few inches off the ground. I'm working on teaching her how to slide out onto her knees, she's not a pro yet, but getting there.

Her g-tube progress has stagnated. I can't seem to get her over the 4.5- 5 ounce-per-feed mark. It's puke city if I push it. Hopefully as she continues to grow her ability to hold down more will grow too. Not 100% sure of her weight, if I had to guess I'd say she's around 25-26 pounds. Not as much as I was hoping for, but she's climbing. Her g-tube has came out twice so far. The first time was my fault, I accidentally drained her balloon. Luckily, I was able to get it back in myself pretty easily. The second time happened at school and she must have yanked it out herself. I wasn't sure how long it was out and she was just getting over some granulation tissue growth around the stoma so I took her to the ER instead of trying to do it myself. By the time they got around to us they had a hard time getting it in. It took a few tries by different people. She cried, it bled a little, but thankfully it went back in.

It's officially Romy's summer vacation! School ended yesterday, and I know she's going to miss it. She loved her friends and teachers so much. Her teachers were incredible and I really wish I could take them with us. Romy has seriously progressed since starting in January. Not so much physically but cognitive and speech wise, she has exploded. She talks! A lot! Most of it is a string of nonsense, but she throws in quite a few words and even some short phrases. "Here you go! Pick me up! I drop it! Read book please! I love mommy!(my fave) and All done!" are her most used. She doesn't say them perfectly, but most people would be able to figure it out. Also, this kid has some manners, she consistently says please and thank you, which is so amazing to hear! She also sings! It's so stinkin' adorable. She seems to pick up lyrics pretty quick. She can sing several parts of nearly every song on her Yo Gabba Gabba CD and pretty much every nursery rhyme known to man. She's also a pretty big fan of Lady Gaga and Jason Mraz.The entire preschool class even performed a song and dance for all of the parents. They sang "All Around Maui" and Romy actually participated! I was thinking that she would just be overwhelmed with such a big crowd and either freeze or cry, but she actually sang and did a lot of the moves. I was a VERY proud mom. I would post the video clip, but I don't feel comfortable posting all of her classmates without their parents permission so just believe me when I say it was really great.

Here are a couple of pictures of Romy taken the other day at her school. They had a little graduation ceremony for the preschoolers who were transitioning into kindergarten. Romy still has two more years of preschool before then. It was her graduation of the first year of preschool though, hence all of the cool lei's she has around her neck.

Get On Board

2011-05-24T08:55:00.002-10:00

Bursting With Excitement!

2011-05-14T13:19:00.000-10:00

A few months ago I posted about the folks over at Marissa's Bunny, and the iPad giveaway. To recap, Marissa's Dad teamed up with his employers to raise money to buy iPads for children with special needs to use as an augmentative device. He was offering 25 of them awarded by merit. I had been contemplating for many months about getting one for Romy after researching and speaking to other CP moms about their experience with the iPad, all of whom raved about it. So I entered Romy not really knowing what to expect. I was upfront about the fact that we were in the process of trying to get a Dynavox (another assistive device brand) for Romy just in case it pulled us out of the running. It didn't. I soon received word that Romy was 1 of 40 finalists chosen from 350 applicants and that she was being reviewed to be one of the 25 winners.

Several weeks later, Dynavox sent us a rental device to try out. I fidgeted with it for a while and had Romy use it to see how she would respond. While it is certainly an amazing product, it is not without faults. It's bulky and heavy, too heavy for Romy to carry in fact. It's a bit tedious to program, and most importantly it's a bit difficult for Romy to use. It requires the push of several buttons, and with her motor issues, it's kind of difficult and frustrating. I'm sure with time it would get better, and she was actually showing a lot of promise. However, another ENORMOUS downfall is the cost. At 8,000 dollars it's worth more than my car. It comes with a 1 year warranty, but after that it would cost 1,100 dollars a year just to insure it! That's a pretty hefty price tag for a soon to be single mom, and even if Romy's health insurance decided to pay for the device, they would not pay for the yearly cost to insure it. I had pretty much decided that my only options were to either suck it up and pay for it, purchase an iPad, or pray that we would win one. I was pretty sure that my previous mention of a possible Dynavox would eliminate us from the giveaway so I began to look at prices for iPads. I found a refurbished one with a warranty and was seriously contemplating purchasing it but decided to wait a few more weeks to save up a bit more money, (we're moving clear across the country and it's ain't cheap!) and boy I'm glad I did.

Last night, I received notice that not only did Romy win, ALL 40 FINALISTS WON! Enough money was raised to get an iPad for all of the kiddo's! Oh, and it doesn't end there, Marissa's Dad's employers decided to throw in a 500 dollar gift card to go toward the purchase of downloading therapeutic programs! This is potentially life changing for Romy. This could be what unlocks her communication barrier and I am beyond thrilled to be handed this opportunity! A HUGE, HUGE, HUGE, thank you to Marissa, her family, and the employers, whom have graciously chosen to remain nameless, for doing such an amazing thing for so many affected children!

They are continuing to raise money to buy even more iPads and programs for other kids in need. Currently, they are raffling off an iPad 2, if you donate 2 bucks, you're in the running! Also, his employers will match every donation made! How exciting would it be to be a part of helping a child communicate? So many of these kids have so much to say and a device like an iPad will give them an outlet. So please donate a few dollars to this amazing foundation, you might win an iPad and you will definitely change a life!

Easter Eggs and My Not-So-Little Brother.

2011-04-25T09:29:00.004-10:00

I hope everyone had a very happy Easter! We spent the day with my sister, her family, and my little brother. Today is his 22nd birthday and we celebrated it yesterday with a big feast and birthday cake. I can't believe how grown he is.

We also had an Easter egg hunt for the kids and it was the first year Romy actually 'searched' for eggs. We pretty much laid them out in plain sight and asked her to find them then, when she focused on one she'd get excited and reach out her hands so we'd hand it to her so she could place it in her basket. Her eyesight is pretty poor so I didn't think she did too bad considering she couldn't physically run around and look for them. It was fun to see her reaction and she really enjoyed breaking open the eggs and seeing what was inside.

I'm not sure if she was kissing her egg or 'seeing' it with her lips as lots of kid's with poor vision do.

P.S- See that shirt she's wearing? It's a size 18mo. and it's pretty snug! She's finally growing into all of her cute 2t and 3t clothes! Well tops and dresses anyway, her bottoms are still 12-18 month sizes. Pants are 2t with a belt but she's gaining!

Silly Girl

2011-04-20T08:55:00.000-10:00

The many faces of Romy! I love each and every one of them.

Long Overdue Bombshell

2011-04-11T10:55:00.001-10:00

This blog has been so beneficial for me. I hope it has in some way helped others too. I hope the mother of a recently-diagnosed-with-CP kid sees this and is comforted to see that it CAN be done and that having a child with CP is not the end of the world, but actually the beginning of something very beautiful and profound. It's not all peachy but it's still very fulfilling.

With that said, I've always tried to keep this blog mainly about Romy and her struggles and accomplishments. I rarely delve into my own life on here, but some recent changes have been happening lately and I just feel like it should be mentioned. I'll keep it short and sweet and then continue on to keep this a "Romy blog," but will probably continue to pop in out with snips of my own life.

So on with it- Ray and I are divorcing. It will be final this summer. There was no one thing that started this snowball, it's just accumulated throughout our 10 years together. We've tried desperately to salvage our relationship but realized that we are so much better people apart. Romy and I will be moving back to the east coast and back to my hometown in a few months so I can finish up school. Ray and I are remaining pretty amicable and we're determined to continue. We're both devoted to Romy and will do everything it takes to make sure she has both of her parents in her life as much as possible and that she has a healthy and happy life no matter what. I come from divorced parents and it wasn't something I wanted for Romy, but I'm learning when to hold them and when to fold them and regrettably, it's time to fold them.

G-Tube Update!

2011-04-07T09:23:00.001-10:00

It's been almost a month since Romy started feeds through her G-tube and it's going really great, although it started off kind of rough with Romy getting a nasty stomach virus that was going around. I wasn't sure if her vomiting was because of the g-tube feeds or from a virus because she didn't have a fever. I was just sick of cleaning up throw up 5 times a day. She refused to eat ANYTHING by mouth and threw up g-tube feeds other than water or Pedialyte. I took her to see her GI doc and he seemed to think it was a viral thing so we waited it out and sure enough the vomiting stopped and her appetite came back with full force, although by that time she had lost nearly 2 pounds!

So for the past 3 and half weeks or so I've been gradually raising her feeds by half an ounce every few days. Right now she's at 4.5 ounces 4 times a day which adds nearly 500 extra calories. It's been tricky, I once added an extra half ounce and that was enough to make her vomit. Her tummy is just so little! The goal is to get her up to 8 ounces 4 times a day.

She feels a bit heavier and her thighs and tummy seems to be filling out, in fact her ribs hardly show at all anymore. She's also less constipated and has more energy. She no longer sleeps up to 16 hours a day! She used to sleep 12-13 hours at night and take 3 or 4 hour naps. Now she sleeps 12 at night and an hour or so during the day. She also seems to have greater physical endurance. She can tolerate her stander for longer periods of time and can spend more time in her gait trainer without pooping out.

My biggest concern was that she would stop eating by mouth but that hasn't been the case at all. In fact it seems like she's been eating MORE by mouth than before. For example, the other day for lunch she ate a peanut butter and jelly sandwich, a bowl of butternut squash soup and a handful of fries! That's pretty much the biggest meal she's EVER consumed. Maybe her stomach is beginning to stretch a bit or maybe it's because meal time is a lot less stressful for both of us. I no longer have to beg, plead, or threaten to get her to eat because I know I can always hook up a feed through her g-tube. Since there's no pressure maybe she's more keen to the idea?

Currently, she eats a meal or a snack and AFTER she's done, she gets a supplemental feed through her tube. Once she consistently starts gaining weight and keeping it on, we'll start slowly trying to wean her off tube feeds. I've heard that can take years. I'm game though, using the g-tube is a lot less stressful than I though it would be. It's actually a piece of cake.

She can't get enough PB&J lately

She's such a sweet and loving kiddo.

Oh My How Time Flies!

2011-03-26T13:55:00.000-10:00

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

Enough Already

2011-03-17T20:43:00.002-10:00

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

2011-03-06T13:14:00.000-10:00

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?

2011-03-06T12:57:00.000-10:00

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.

2011-03-05T19:54:00.000-10:00

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.

A Bit of Inspiration

2011-02-26T21:53:00.001-10:00

Some of you may remember the post about Zach Anner that I posted a while back. Zach was in the running to get his own show on Oprah's new network. He has CP and is in a wheelchair and is oh-so-funny. He also won! Well, Oprah decided to give the two finalist's (him and another contestant) their own shows. I can really see him being a huge inspiration to people with disabilities and also for those without. Way to go Zach, can't wait to watch! Here's a quick clip of him explaining what he hopes to accomplish:

She's Music to Me

2011-02-24T09:22:00.000-10:00

I haven't updated about how Romy's doing in school since she started so I thought that I'd better before I forget. She's been in preschool for about 6 weeks now and luckily Romy is doing AMAZINGLY well. She's learning new stuff everyday and it's so exciting to see what she's capable of. It took her a while to get used to being there and she would cry whenever I left but I would wait just outside of the door and listen in. Sure enough the second I was out of eyesight she would stop. She just liked to make me feel a little guilty, I guess, and she hasn't done it for the past few days so I think we're over that hurdle. When I pick her up she's always all smiles and says in her sweet little voice "Hi, Mama! Up?"

Her teachers say she participates well in everything they do and interacts wonderfully with her classmates especially a sweet little boy who follows her around everywhere. So far she can count to 3, sometimes 4, and a few times she even kind of counted to ten but it sounded like this: "One, doo, bee, foe, I, aye, die, nen!" Yes, she incorporates the word 'die' in her counting. Crazy girl. She sings some of the letters in the ABC's mainly a-d, p, r, m, n and y. She's also working on spelling her name and has done it a few times but it hasn't been super consistent. She sings along to all of the songs during circle time and knows many of the words and short phrases. She can identify a few colors and at least 10 body parts.

Also, she is getting mighty fast in her gait trainer. Her teachers put her in one several times a day and have reported the same thing. She still needs some help pushing along sometimes due to her weak muscles but she's getting there. She's been trying to cruise more and is pretty successful some of the time. However, just recently, she started army crawling like crazy. She's been able to for a long time but never really relied on it for mobility. I left her alone in her room to play and came back 5 minutes later to find her GONE. She was all the way down the hall in my room where she dumped out the contents of my purse and was playing with it. It was such a normal toddler thing to do and I couldn't do anything but smile and laugh. I hope she can learn to 4-point crawl this year. That would be so exciting.

Her g-tube surgery is in about a week and it's really starting to wreck my nerves. I'm just so nervous about the whole thing. The surgery, the hospital stay, the recovery, and learning how to be comfortable using that thing. I decided against the fundoplication surgery that her gastroenterologist recommended and luckily the surgeon agreed with me. She just doesn't have the symptoms that would justify one right now. I hope I'm not wrong. I just don't want any unnecessary surgeries, especially one that has higher risks. For the past few weeks I've been staring at Romy's belly and just taking mental pictures of her smooth unscathed skin because soon there's gonna be a rubber button there and even after she no longer needs it and it's removed, the scar will still remain. Even though I'm pretty bummed and nervous, I know it's really going to help Romy thrive.

Okay, well now that the update is done it's picture time! Romy and I, my sister and her family, as well as my brother spent a relaxing day at the beach this past weekend. We hadn't been in a while so it was very much needed.

She's a bit obsessed with sunglasses. I think she has around 7 pairs.

I can't believe how grown up she looks here.

Uncle Kane got pinched by this crab. Don't worry PETA, we let him go.

She loves playing in the sand and still continues to love to eat it as well.

Little yellow polka dot bikini.

The beach we went to is where they're filming the next Pirates of the Caribbean so we got to nose around the Black Pearl.

North Shore fun, G-tube Not-so-Fun

2011-01-28T11:31:00.000-10:00

My brother is here visiting and we took Romy, my niece, and nephew up to the North Shore to see how big the waves were (they're huge in the winter) and to cruise around and soak in the sights. The waves weren't as big as usual and that was a bit disappointing but on the plus side, the kids were able to get in the water and not get crushed by 20 foot waves.

We visited a few different beaches and cruised up to the fruit stands and bought a ton of fresh fruit to eat on the way home. Romy has a new found love for papaya! It was such a fun day! We drove home tired, tan, and sticky from the fruit- it was absolutely perfect.

On a not-so-fun note. Romy will be getting a g-tube. We meet with the surgeon in about a week and a half and it will be scheduled shortly after. Romy keeps plummeting on the growth charts and it's been recommended by every single one of her specialists, even her gastroenterologist, whom was originally against it. A few of them even think that her nutrition (or lack of) is contributing to her delays and stiff muscle tone. She will also most likely be getting fundoplication surgery as well to prevent any reflux which (the reflux) could be extremely dangerous considering Romy's swallowing disorder. Although she doesn't currently have reflux many patients who get tubed end up getting it. If they do decide to include the fundoplication surgery along with the g-tube placement, she'll be in the hospital for 3 or 4 days. It's all gut wrenching and terrifying so I would seriously appreciate your thoughts and prayers. I'll keep you guys posted.

A new brace, a wheelchair, a Christmas, a birthday, a new year,a new pair of glasses, and a preschooler.

2011-01-10T22:31:00.004-10:00

Yes I know, I'm pretty much a sucky blogger lately. SOOOO much has happened in the last 2 months that I haven't had much time to blog. However, things are winding down and I will once again start to blog more regularly.....I promise!

Well get ready for a super, mega-long read. Here goes...........

Romy got a new brace called the S.W.A.S.H and it helps to keep her hips from turning her pelvis and legs inward. It's enormously bulky and the biggest pain to put on but it has virtually eliminated her scissoring (while it's on anyway) and her gait and posture are very much improved. Still no independent walking (with or without her walker) but she's getting pretty good (and fast) at it as long as I'm behind her to scoot her along when she lags. She's still standing pretty well and we've been working a lot more on crawling. Romy is really starting to show her defiant side when it comes to doing therapy and many times she will flat out refuse to do ANYTHING. Typical.

Also, her wheelchair came in! It's a pretty awesome piece of equipment. She really loves it and has mastered rolling forward and backward and is almost stopping on her own. As for her steering.....well she IS half asian....just saying. Lol, anyway- she's only using her chair in class and if we go to somebody's house. It helps her explore her surroundings on her own without having to scoot on her butt which is how she gets around at home. Ideally she won't get too used to always being in chair so that we can really get her up and walking. Check out Romy's new wheels:

Christmas was really fun this year even though Romy was sick. It was the first year that she seemed truly into opening gifts. Her eyes would light up and she'd say "Whoaaaa" for every gift. It was pretty adorable. She got spoiled rotten by her Grandmother's and her Tita Lisa. I swear we were opening gifts FOREVER. Between Christmas and her birthday I literally had to pull out her old toys to make room for the new ones. There is a serious yard sale in our future! Here's a few pics of our tree and some of Romy's favorite gifts:

Merry Christmas!

She LOVES this toy. She spent hours combing her hair and putting 'make up' on her. Such a girl.

Romy is now three years old! Happy Birthday my little munchkin! I cannot believe it's been three years since I met you. I feel like I've known you my whole life yet my life didn't really start until you came along. I love you baby girl and I can't wait to see what this year brings for you. I've got a really great feeling about you being three!

We had a small little get together and had cup cakes and opened presents. Romy will be having an actual birthday party soon though. So keep an eye out for pictures!

Romy and her Tita Lisa (or as Romy calls her "Tita TaTa's"- not sure why..lol)

Cake Face tradition

Ridiculously cute kiddo's!

Perhaps the most exciting news is that Romy started preschool! I prepared Romy the previous day by sitting her down and telling her that it was time for her to be a big girl and go to big girl school without her mommy but that I would be back to pick her up after her nap. She looked at me with those big chocolate brown eyes and burst into tears. The following morning she cried as well, I guess my nervousness was rubbing off on her. I dropped her off and she cried some more. One of her therapist from early intervention actually came and stayed with Romy for a few hours which was so incredibly nice. Once Romy turned three she aged out of the early intervention services program. We're truly going to miss all of her wonderful therapists from that program. They have helped Romy in so many unbelievable ways and I know for sure Romy wouldn't be doing as well as she is if it wasn't for those awesome women.

Luckily the tears apparently stopped a minute after I left and she had a really awesome first day. Her teachers were really great and took notes about her day. I went to pick her up at 2 and peeked through the window where I saw her happily playing and I breathed a huge sigh of relief. Her classmates were all really excited to see her the following day and ran right up to her to scream "Good Moring Rony!" I don't know why but most kids have a difficult time pronouncing the M in her name and just replace it with an N. She's been going for nearly a week now and her teacher's say that she's a really happy kid and that she's interacting really well with the other classmates. She even naps well and eats well at school....can you believe it?

All dressed up on her first day of school! Her backpack puts into perspective about how tiny she is.

I love her pose, such a ham.

Romy in her classroom. Do you see her new glasses? Her prescription has doubled.....bummer.

So as you can see, Romy has been one busy little lady. She has been adjusting to all of the changes well though and for that I am incredibly grateful. I hope everyone had a happy holiday season and that we will ALL have a truly amazing new year! With that I leave you with a picture of my beautiful daughter:

Gosh, I love that face!

3 Years of Lumpia

2010-11-24T22:58:00.001-10:00

For the third year in a row I've taken an annual Thanksgiving Day picture of Romy eating lumpia, a filipino egg roll. It's so awesome to see how much she's grown! I am so very thankful for this wonderful little lady and she continues to be the very best thing that has ever happened to me! I love you so much my sweet girl!

2008

2009

2010

Halloween and a g-tube update!

2010-11-02T22:37:00.000-10:00

Romy had a great Halloween, she showed a little bit more interest in it this year than last year but was still pretty unimpressed. She's not the biggest fan of candy either but she did enjoy riding the wagon all around the neighborhood. Ray requested for her to be a pirate, so that is what she went as. Unfortunately due to constant deployments and training, Ray has never been home for Halloween since Romy was born. Boooo! Anyway here's a few pictures of the festivities:

Grandma and 2 out of 3 of her grand babies.

I love her facial expression in this one!

Smooches for Grandma!

Romy and all her booty!

Romy also recently had an endoscopy. It showed motility issues, meaning that her esophagus muscles have a hard time regulating how she swallows. In fact the muscle that joins her esophagus and stomach hardly seems to be working. This could very well be why she doesn't eat much. However, there were no signs of reflux which is a great thing but kind of puzzling at the same time. Unfortunately there is no cure for this and it may or may not get worse or better over time. It's one of those crappy 'wait and see' situations.

As far as the g-tube goes it has been completely left up to us. Apparently Romy is actually on the growth curve for a child with Cerebral Palsy. However, they only have charts for those with quadriplegia and not diplegia. So we're kind of stuck in g-tube limbo. I don't want her to get one if it isn't necessary but i also think that if it won't hurt her and it may help her then we should go for it. So as of now, I'm not really sure which way to go with this. It's all driving me nuts. Please pray for us!

Can Anyone Guess who Pooped AND Peed in the potty???

2010-10-17T17:37:00.000-10:00

This girl did! We're so proud of you Romy!

Romy's been letting me know that she's had a dirty diaper for months now but fairly recently started letting me know BEFORE she had to go. Today I plopped her down when she told me 'butt,' which is her way of letting me know she has to go, and lo and behold she immediately went poo and pee! My Mom is here so we both went crazy and did the way-to-go pee pee dance. I think we made a big enough deal that she realized she did a very good thing. I know we've still got a long way to go before she's officially potty trained but, this a very exciting first step! Yay!

Banana Ketchup and ipads

2010-10-06T23:02:00.004-10:00

I don't know when and I don't know how but we're getting Romy an ipad. I'm sure most of you think I'm nuts for even thinking of getting a not-quite-three year old a 500 dollar device but hear me out!

I read a TON of blogs, mostly about other special needs or preemie kiddo's. The coveted ipad has been popping up all over them as of late and I've been quite impressed. Many kid's with CP can understand more than they can convey through words and the ipad has been a Godsend to so many families. Kids who can't verbally ask for things or communicate are now able to using certain programs or apps made just for them on the ipad. I've seen kids with less motor function than Romy effectively use the ipad to make requests, communicate, and learn using this device. I'm pretty sold.

As some of you may remember, we were/are currently in the works of obtaining a Dynavox brand augmentative device. While I know it's been proven to be an effective tool, there's some definite faults. First off being how hard it is to get one. While our insurance will completely pay for one, getting them to approve one is ridiculous. We'll have to get tons of recommendations from her doctors (all 1,492 of them) and then prove that she can even use the device. To prove it, we have to first obtain a loaner and then 'train' her to use it. Then she'll be tested in front of a panel who will then approve or deny her. Romy is not a good test taker, she's what Ray likes to call a 'choke artist.' The process could very well take 4-6 months or more.

Then there's the cost. The Dynavox comes with a hefty price tag, while we don't have to pay out of pocket for it, our insurance does have a yearly equipment cap. From what I've heard, it's quite high but I would hate to use up 5-8k (depending on the model) and then need some other form of expensive of equipment later on and learn that there's no money left for it.

Also, the Dynavox is big, heavy, and clunky. The ipad is compact, light and it just plain looks awesome. If the Dynavox breaks it's an expensive piece to replace, if an ipad breaks, while still expensive in my book, the price is a bit more palatable.

Romy's speech is starting to explode again, she's been saying a few new words a week and she's even putting together two words more frequently. Her favorite being "Go, puppy!!!" So some might wonder why even get a speech device. Well although Romy's speech is improving greatly she is still pretty far behind, most kids her age are speaking in full sentences. I, along with her therapist's, think that a device will help push her towards her goals.

I can sense Romy's frustration when I don't know what she wants. My sweet little Romy has been throwing tantrums lately and her separation anxiety is back in full force. I'm thinking there's a strong connection between the tantrums and her lack of speech. I mean how frustrating would it be to want or need something and not be able to go get it for yourself or ask someone to help you? The wheels are turning in her head but nothing is coming out of her mouth. So my mind is set, Romy's getting an ipad. Now I just have to convince Daddy......

Here's a picture of Romy in the throes of a tantrum:

Does this face help convince you, honey?

Anyway, in true Romy fashion, since the word 'g-tube' has once again been thrown around she has started eating like a champ. I credit my Mother on this new development. Romy's typical diet consisted of pretty standard kid fare. Chicken nuggets, fries, mac and cheese, or an occasional banana. Stuff like that. Since my Mother has been here she's been cooking some good old fashioned Filipino soul food and I'll be damned, Romy LOVES it. She now eats rice at nearly every meal and likes things spicy or sour and covered in banana ketchup. Yes, banana ketchup. Although she's eating much better, I still see a g-tube in her future.

Walking Tall and a Birthday!

2010-09-22T23:00:00.002-10:00

Romy received her super awesome, hot pink gait trainer not too long ago. The first time she was strapped in was pretty traumatic for her. She cried and cried and cried. For the next few days after that she would cry whenever she even laid eyes on it. I was beginning to think it was a lost cause but with the help of her therapists, we got her to try it out sans tears. She needed a LOT of help to walk in it, meaning somebody had to be behind her and forcefully make her legs take steps (this kid's muscles are RIGID) but, she dealt with that pretty well. Tonight I strapped her in expecting more of the same but willing to just let her get used to it more. However, Romy decided tonight would be the night she would take many steps all by herself. As in 14 steps. My baby is REALLY learning to walk! Her steps are very small and she's very timid, but I can see it in her eyes that she's so proud of herself. She still doesn't have much control as she hasn't figured out how to steer, but it's a really wonderful start. My Mother flew in last night and I really think that Romy was trying to impress her by taking steps in her trainer. Mission accomplished, Romy, Grandma was very impressed. We all are!

Last week Romy's future school held what I thought was going to be an IEP, but it turns out it was kind of a pre-IEP to even see if we needed an actual IEP. Romy recently had an IFSP done through Early Intervention so PT and OT decided to just go off of that report. (Sorry if this is gibberish, other special needs Mom's know what the hell I'm talking about) I've still got speech and a few other people to meet with but she's been approved to receive the same amount of PT and OT that she's currently receiving. I was a bit worried that they would try to decrease the amount as I've heard many horror stories, but i guess we got lucky. I'll keep everyone posted on the final therapy tally.

Today is also Raymond's 29th birthday! Happy Birthday Daddy-o! We really do miss you and wish we could be with you today! I hope your day is a great as it can be. We love you very much and can't wait to have you home! Be safe out there, Love.

Where'd My Baby Go?

2010-09-08T22:42:00.000-10:00

That's a picture of Romy a day or two before we brought her home from the hospital. She was around 3 months old. I'm in such awe of how far she's come. She's a soon to be preschooler! I can't really wrap my head around it.

We met her future teacher last week. She seemed nice and very well versed in the special needs department. So far I'm pretty impressed with the program. Romy will be in a developmental preschool class. Her classmates will all be other kiddo's with varying special needs. Some might only have a mild speech delay or some might have CP like Romy. The really great thing is that each class only has 6 kids so they'll get lots of individual attention. She will have 1 full time teacher, 1 assistant teacher and 1 'floating' teacher who just goes around and helps out with all the developmental preschoolers. There's a nurse aid that will be there too. She'll be in school from I believe 8-2:15 Monday through Friday except for a half day on Wednesday. I was kind of surprised that it's an all day program, but I think once Romy gets used to being away from me, she'll really love it.

Her teacher said that they work a lot on potty training, which I think is fantastic! For a while now, Romy has been letting me know when she has a poopy diaper so hopefully she'll be receptive to the whole potty training thing.

Next week she'll be evaluated up at the school by all the different specialists to see what kind of therapy plan she'll be on. After that it's official. Romy is going to school! Whoa.

Ro Ro

2010-09-01T21:00:00.001-10:00

My poor neglected blog. I'm not sure why I don't update as much, I just run out of stuff to say sometimes but, I guess that's kind of a good thing. No news is good news, right?

However, the Grandma's get a bit antsy when they don't get their fix of Romy pictures so, here you go ladies!

Romy is doing fantastic. She's been talking a lot more and repeating pretty much everything she hears. I was feeding her some mushroom risotto the other day and she said "Mama ssss goo." Which I think might translate to "Mama, it's good." I haven't heard it since but I was still pretty impressed. She also got new AFO's! I think they're a much better fit than the last ones were. She tolerates them much better and rarely kicks out of them at all.

As many of you know, Romy will be starting school in January. Therefore, Romy needs her very first wheelchair. I've known this for some time but it didn't really hit me until one of her physical therapist's handed me a pediatric wheelchair catalog. It was kind of like a punch in the gut coupled with a mild case of vertigo and a bit of a cold sweat. "I'm picking out my child's wheelchair." I thought. "A WHEELCHAIR!"

Romy cannot walk. Will she ever walk? I think so. God, I hope so. Will she walk without the use of an aid? I don't know. Maybe. Hopefully. I thought I had come to terms with it, but at that moment I realized I had not. Boo.

Just to clarify, this doesn't mean we will stop trying to teach her to walk, we will still push her as much as she'll let us. She just needs something to get to and from the classroom, playground or cafeteria. Her teachers can't carry her everywhere. Not to mention that this kid WANTS to walk. She's determined and I think that's what will get her there. Determination, that's what my little girl is made of.

Anyway, if there are any special needs Moms/Dads out there who can recommend an awesome first time wheelchair, that would be awesome. We're looking for something manual and appropriate for a very tiny toddler. Thank you.

Now for the real reason you're here......pictures!

What? Can't a girl watch some SpongeBob in the buff

Romy, modeling the new line of denim print diapers.

The sweetest face I know.

Recent Romy Pictures

2010-08-10T23:25:00.003-10:00

I really like that last picture, the one with her sleeping in her high chair. She hardly ever does that and it just makes me smile for some reason. I also love her in cute little dresses. I adore having a little girl.

It seems like she's been growing up so much lately. She's really starting to like drawing, painting and playing with play-doh. We've been working on her fine motor a lot lately so all that stuff is great practice. She likes to eat play-doh too. Anyone know how many calories in play-doh? Anyone?

She had another genetics evaluation recently. She's pretty much been cleared of any kind of genetic abnormality but we might revisit it in a few years if the concerns are still there. Hallelujah! However, they do want to do some metabolic testing. Her geneticist is pretty sure there isn't a problem but he would like to rule it out indefinitely. Her poor growth is probably due to her prematurity which caused her CP, which in turn affects her eating which then makes her the smallest 2.5 year old without a form of dwarfism known to man.

There has been more g-tube talk. Now her neurologist is worried. We FINALLY have a GI appointment. We've literally been waiting a year for one. I'm pretty sure he/she will want to go forward with it and honestly, I do too. Her growth has been non-existent and at 2 and half years old it's a pretty vital time for brain development. I don't have much else to say on the matter as I'm not sure how I feel about it just yet. I know it's best but it's still a scary step.

Other than that, she's doing great. The other day my niece was telling Romy how adorable and cute she was and do you know what my conceited little girl said? "I know." My Mom said that that was always my reply as a child too. I could not stop laughing. Sure she might be a tad vain, but she IS super adorable and it's also two connected words! Hooray for conceited development!

Long Time No Post.

2010-07-22T20:58:00.002-10:00

Wow, it's been a while since I posted. I guess it's been a mixture of having my hands full, no news and sheer laziness. Sorry guys. Here's a big ol' update for ya.

Romy has adjusted fairly quickly after Ray left. The first night was awful. I mean REALLY horribly awful. Ray always put her to bed every night without fail, so she was so upset when it was me who had to do it. She cried for her 'Dada' and it ended up being extremely upsetting for both of us. The next night was much better and we haven't had too many problems in the sleep department since.

The 4th of July was pretty exciting for Romy. She absolutely loved the fireworks. Last year she was terrified of them, but this year she kept clapping and signing for more. Super cute stuff.

Romy also had her annual IFSP. It went well and I was so surprised at how much she's accomplished since last year. Her motor skills are still very delayed (of course) but her cognitive and social skills are blooming wonderfully. She's 30 months old and her cognitive age is anywhere from 23-27 months. So she's still lagging behind but if you adjust for prematurity, she's doing many age appropriate things. What puzzles me is how she always gets SO close to catching up and then stagnates for a month or two or even three which then keeps her from being age appropriate followed by a burst of development, which then continues to cycle. However, she's still considered to be doing remarkably well and I'm pretty confident that she WILL catch up once and for all. Who knows how long it will take, but we aren't stressing.

Her social skills were her strongest skills. She was age appropriate and beyond. What a little social butterfly. However, these social skills did not include speech. She's still fairly delayed in the speech department. She is beginning to name more objects and has even strung together a few words, but she still relies mostly on gestures and signs to get what she needs. She can says her name "Whoa-whoa" as in "Ro Ro," which is what her cousin Chris calls her. She says "beeze" for please and "tanku" for thank you. We've begun to look into augmentative communication devices for her as well. Her speech therapist's introduced us to the idea. I was hesitant at first, but they really believe it's the motivation Romy will need to really get her speech going and help her communicate more efficiently at the same time. However, the equipment is extremely pricey, like five figures pricey. Our insurance will most likely cover it if we can prove that Romy has the cognitive skills to operate something like that. We'll probably start off with a loaner and work from there.

Other than that, we're still waiting on her walker but she's been doing pretty good with the basic loaner walker we have. I still have to help her keep her legs from crossing, but she can take steps by herself. She's also getting fitted for new AFO's tomorrow.

Well, that's about all that's new for us. Ray is doing well over in Iraq and we've been able to talk just about everyday. We've also been using Skype a lot, getting to see his face has been great. Romy gets super excited too. So, who's ready for some pictures???

Good Morning, Romy!

Thumbs up!

Waiting for the fireworks with Tita Lisa.

Cheeser.

Deployed Daddy

2010-07-02T13:38:00.003-10:00

Ray deployed and it stinks. We miss you Daddy!

Wordless Wednesday

2010-06-30T21:49:00.002-10:00

Da Zoo

2010-06-28T23:29:00.001-10:00

We took Romy to the zoo for the very first time this weekend. I was curious to see how she would react to all of the different animals but she didn't really care for them so much. I think she's still too young to truly appreciate it. She did love being outside and getting pushed around in her stroller though. Maybe next summer she'll be more into it. However, I did get some pretty cute pictures.

This one is really great, how cool is it that she can stand up and only use one hand to keep her steady? They were looking at the Orangutang exhibit.

Here my loves are in front of the Rhino's. Be sure to check out her new spectacles.

This one is crazy, it's at the Chimpanzee exhibit. It looks like one of the chimps got angry and broke the glass. Yup, those are chimpanzee handprints. Kinda scary.

Breakfast Club, Botox, and Bieber Bangs

2010-06-23T20:59:00.000-10:00

Romy has been a busy girl lately. We've recently placed her in a social group for kiddo's with feeding issues. The group is called 'The Breakfast Club,' how cute is that? Basically it's a small group of kids who get together one morning every week and make food, eat, and play. The group is made up of mostly kids with different kinds of developmental disabilities that are all around two or two and half. Romy is the only CP kid and by far the smallest. However she is also the 'best' eater. Most of the kids besides her rarely eat anything besides crackers and high calorie milk or formulas. It's ironic to say the least. Romy's feeding issue is purely the amount she will take in. She does have some oral sensitivity and prefers a core of 6 or 7 different foods but will pretty much try anything at least once. For example, for breakfast she'll have half a waffle or maybe a tablespoon or so of grits and perhaps two or three bites of a banana. Lunch will be two chicken nuggets and few sweet potato fries. Her snack is usually two or three bites of cheese and handful of crackers and dinner is, quite often, half a grilled cheese sandwich. She'll also take a bite or two of something I'm eating throughout the day. It doesn't sound so bad, right? However, she is not a big drinker either. Most picky kids pick up most of their calories with the milk that they drink but Romy rarely drinks more than 16 ounces of anything a day. We bulk up her milk with Carnation Instant Breakfast Mix and it adds at least 260 calories a day but it doesn't seem to be enough. I try to sneak in heavy cream but Romy can tell and will promptly refuse it. I give her high calorie smoothies but most times she'll drink a few ounces and be done.

While Romy is in her play group the parents meet with different specialists to learn tips and techniques. Today we met with a child phycologist. She gave us a lot of great tips and we tried them out today and I am happy to report that today was her best day of eating in quite a while. She ate some trail mix that the kids made, half of a cheeseburger, at least ten fries, a chocolate wafer, 5 cubes of cheese, 3 ounces of yogurt and 6 pizza rolls! I know what you're thinking, it sounds like a bunch of crappy food, right? You're right, but it's FOOD. It's calories and fat that she desperately needs to develop her mind and body. Believe me, we tried the whole "whole grain this, organic that, fruit this and veggie that" thing but it simply does not work with Romy's palate or sensory issues. Don't get me wrong, we still offer nutritional food but if she always eats around it then so be it. The fruits and veggies are there and one day she will try it and maybe even like it. To quote her dietician "Yes, kids can survive off of chicken nuggets." We learned that we must back off when it comes to meal time. In the mean time the Carnation adds vital nutrients and she also gets a daily multi-vitamin.

Overall, I'm pretty excited about The Breakfast Club, especially the social interaction that Romy is getting, AND when I drop her off and leave the room she doesn't cry! Goodbye separation anxiety!

Romy got botox today. Hopefully it will be helpful. Her neurologist is also referring us to a neurosurgeon. We're going to talk about Romy's future surgical options.

Here's my sweet girl! Did I ever mention that she broke her glasses? We pick up her new ones tomorrow. Also, her eyes have improved quite a bit! No more astigmatism, very little, if ever, nystagmus and her prescription went from -5.25 and -4.75 to -4.0 in BOTH eyes! WooHoo!

Lately, we've been letting Romy brush her own hair after her bath. She always brushes it into 'Beiber bangs,' you know, just like Justin Bieber. Funny girl.

Happy Father's Day!!!

2010-06-21T00:29:00.000-10:00

We started the day off by waking Ray up with cards and a present followed by a huge homemade brunch at my sisters house for the guys. Then, Ray got some alone time at the driving range for a bit.

This Father's Day was a bit more emotional than the last. Ray is leaving VERY soon for another tour in the middle east. Romy is going to miss her daddy SO much. Last time he deployed she was so little, she had only been home from the hospital for a week or so before he deployed. So when he came back he was pretty much a stranger. Over the past year, they have formed this beautiful bond. It's almost like she's agitated when he's not around. I really could not ask for a better father for my child. I'm really going to miss having him around to pick up the slack! I think what I will miss most is the look we give each other when Romy does something cute or funny. The look only mom and dad give each other when their kid is doing something extra special.

We love you Daddy! Be careful and we will miss you more than you will ever know.

I cannot forget to mention my own father either. He's the best. He really is. I mean he's REALLY awesome, did you know he was in a band when he was a kid? The bands name was "Sweet Venom," how rad is that! Lol. He also happens to be an amazing grandpa to Romy. Love you Pops.

Of course we can't forget about good ol' Papa Goat either. Romy took to him right away, too. You do know why we call him Papa Goat, right? G.O.A.T= Greatest of All Time. True story! We love and miss you very much!

Zach Anner For President

2010-06-14T15:03:00.004-10:00

I'm sure you realized what this clip was for but just in case you're confused, here's the rest of the story:
Oprah is holding a contest and the winner gets their own reality show. Thousands of people entered their video pitch to win and this is Zach Anner's. Obviously I feel compelled to vote for him because he has Cerebral Palsy like Romy does but even more so because he is genuinely funny and has an awesome concept.

I don't want Romy to feel limited because of her disability. I want her to travel and see as much of this wonderful earth as possible and maybe, just maybe, this show will show her that it's possible. Hell, he could very well inspire us all. The singer, John Mayer, has even pledged to write and sing his theme song if he wins. Zach has literally gotten millions of votes already and is probably a shoe-in but just in case, don't you want to vote for him? Follow this link and vote.

Romy Lately

2010-06-11T14:01:00.000-10:00

What has little Miss Romy been up to lately? Hmmm, let's take a looksie.....she has been......

Feeding herself with a spoon! It gets everywhere, most of it in her hair but a lot of it actually ends up in her tummy! Pretty awesome for a CP kid!

Sunbathing with Sea Lions...

Rooting for the Flyer's with Daddy, even though they didn't win=(

Finding her way into the TV stand cabinet and making a mess. Apparently that's where Dad thinks newspapers go.

Loving on her baby doll. She's been really into them lately, hugging and kissing them and even brushing their hair. Very cute and very girly, I love it. I remember playing with dolls for hours when I was little.

And just being all around cute.

Walk and Roll

2010-06-03T13:55:00.000-10:00

A few weeks ago at a PT visit, Romy tried out a walker. She didn't do so great but she didn't do too bad either. She even managed to take 3 wobbly and very crooked steps. STEPS!!! So we ordered her a customized hot pink one that should hopefully be here within a month or so. Until it arrives her other PT gave us a basic loaner walker. This one doesn't have the bells and whistles that Romy's will come with but it will hopefully get her used to using one.

Lately, we've been working a lot on standing and taking steps. You see, Romy knows exactly what to do, it's the execution that she has a hard time with. It's very hard for her to bend her knees and it requires a lot of concentration and determination on her part. Luckily, she is one determined little lady.

Sometimes she does surprisingly well with standing and only needs minimal support, other times she wants nothing to do with it. This is Romy with one of her PT's, Romy was combing her hair.

Here she is in the loaner walker, doesn't she look so cute?

Romy's First Haircut!!!

2010-05-31T17:27:00.006-10:00

The famous Romy mullet has been laid to rest. No more curly tendrils covering her eyes or being mistaken for a little boy from the early 90's. I'm not quite sure why, but I was the only one who wanted her hair cut. Everyone else tried to talk me out of it. I was so sick of her hair covering up her cute little face that I had to sit Ray down and have a long talk about the pro's of cutting her hair and FINALLY he caved. Next up? YaYa. She was a tough one to break but luckily she did. I promised to only cut her bangs so that she could finally see a world free of hair strands. However, the stylist did talk me into trimming her "free form rat tail"- her words not mine. So she ended up getting an inch or so off the bottom as well. Sorry YaYa, I promise to not cut any more length off for a while.

Anyway, we took her to a kiddy salon that specializes in little rugrats that don't want their hair cut. It started off rough, Romy didn't want to sit in the cute little airplane seat so Ray plopped down and Romy sat in his lap instead. Then came the tears. By the way Romy was screaming you would think that the stylist was spraying her head with acid and not water and that she was ripping Romy's hair out instead of cutting it. That lasted a few minutes until the stylist handed her a cup full of cookies. She immediately calmed down. Is there anything kids won't do for cookies?

It didn't last long and it turned out super duper adorable. Romy got a certificate and a picture and we saved a few locks of her hair. It kind of makes me sad that the hair she was born with is no longer attached to her head but it had to be done.

Here's before and after shots:

Before:

During:

After:

Also, here's a few videos of Romy's little adventure-

Also, Happy Memorial Day everyone! Please remember the true meaning of today and that it isn't just a day off of work to BBQ and veg out. Remember the fallen, those who gave their lives so that we can enjoy ours!

Go Lakers!

2010-05-28T23:13:00.002-10:00

Since I was born in Los Angeles (Hollywood to be exact!), it is in my nature to be a Lakers fan. This means Romy is too- no matter how much Ray hates it.

Gosh she's beautiful, huh?

Funny Nugget

2010-05-24T17:13:00.000-10:00

What Would You Do?

2010-05-20T09:01:00.002-10:00

She's a Flavor to the World.

2010-05-15T21:14:00.000-10:00

I realized today that Romy is not much of a baby anymore. The realization hit me like a ton of bricks as she gingerly took my cherry flavored icee out of my hands and sat there holding this massive cup and taking sweet little sips from the foot long straw as if it was an everyday occurrence to drink out of big people's cups. As Ray and I admired her 'big girlness' she then proceeded to dump the entire contents of said icee over her head and dress. We were in the middle of Target at the time so I didn't get a picture but it was pretty funny.

Here are some pics from today at the beach. Isn't she so GROWN??

She's so limb-y.

I love her little funky feet. I can't get enough!

Romy and her famous angry smile.

Sweet Pea

Luscious little lashes.

Sick of being photographed!

Sweet

Music, Mother's Day and Genetics

2010-05-13T14:05:00.003-10:00

I just realized that I never blogged about how Romy's music therapy has been going. She's been in it for about a month and a half now and it's been really wonderful. She works one on one with her therapist and it mainly consists of singing songs, playing instruments and stuff like that. It doesn't sound like much but it works! They use techniques that I can't really explain clearly but it just has this beautiful effect on Romy. She strums away on ukulele's and "sings" along to her own music. Her favorite by far is the piano. She'll bang away and giggle and talk. Lately she's been saying "Play? Me play? You play?" or "Look" to bring your attention to her piano playing. She has even begun to sing along with the actual words (other than coo's and babbles) in one particular song. Oddly enough, it wasn't her therapist that pulled it out of her, it was none other than Justin Bieber. Romy goes absolutely crazy for his song "Baby" and will sing the word 'baby' over and over when it's on. It's so adorable. Oh and just so you know, I don't listen to Justin Bieber- I have a 10 year old obsessed niece. Just sayin.

Anyway, Mother's day has come and gone and it was spent relaxing at home. Honestly, I was still beat from our Maui vacation that I just didn't feel up to doing much. Ray and Romy got me a few books and let me take a delicious 2 hour nap. Ray also did the dishes unprompted (completely unheard of!) and that was all it took to make me have a wonderful Mother's day.

I also never blogged about Romy's genetics evaluation. As most of you know there has been some concern about some of Romy's puzzling symptoms for some time now. Back in Texas they were thinking she possibly had a certain syndrome but that has now been ruled out. While that was a huge relief, they still aren't 100% sold on ruling out any kind of genetic malformation. They are definitely leaning towards ruling it out but we're still kind of stuck in genetic limbo. They think that there's a huge possibility that Romy's CP, size and delays are completely explained by her extreme prematurity but because there is no concrete reason for my troubled pregnancy and Romy's ridiculous eyebrows they want to do another blood test to see if anything pops up. She's already had 3 and they've been normal thus far so we're pretty positive. Back to her funky eyebrows, Ray and myself could not think of one person in our families that had eyebrows like she does. Then one day my biological father's face popped in my head. I remember he had super thick unruly brows but the memory was still a bit fuzzy. So I emailed him my concern and he looked over her pictures and is completely sold on her having his and my aunt's (his sister) eyebrows. I'm trying to get a hold of some pictures so I can bring it by the genetics office. Hopefully it will match up and we can get one step closer to ruling everything out completely. Fingers are crossed.

This is Romy's new face. She does it whenever she doesn't get her way. Such a funny girl.

This is how I found her this morning. Although she's been able to push herself into the sitting position for months, she's never done so in her crib. I think it's time to lower it all the way. Once we can teach her to safely get down off of furniture, we'll make it a toddler bed! Also, you see that hair? Say goodbye to it, Daddy finally caved and gave the green light to cut it!

A Very Maui Anniversary!

2010-05-08T22:25:00.004-10:00

Ray and I just got back from a quick 4 days anniversary vacation in Maui. Trips alone are very few and far between so it was really nice especially since Ray will be deploying soon. My sister was kind enough to watch Romy and the dog the entire time. Thanks Lisa! I really enjoyed sharing a place that I love with Ray. We packed in as much sightseeing as we possibly could and he loved it. We both did. While I was working on a cruise ship back in 2005-2006 we docked in Maui for two days a week. I explored it as much as I could but it was never for more than a few hours at a time. I vowed to come back and really soak it up. Having Ray come along was a lovely bonus.

We stayed in Lahaina at the Aina Nalu. This place was stunning! We booked a studio and they upgraded us to a swanky 2 bedroom suite for free! I forgot to get pictures of the salt water infinity pool and jacuzzi but those were ridiculously fantastic as well. Our favorite part of the hotel? The bathroom. Lol. The shower had a rainfall shower head and was made completely of stone. It wasn't uncommon for us to take multiple showers a day because it was that awesome.

We don't need no stinkin' shower curtains.

We went on hikes just about everyday and searched for little treasures everywhere. Maui is the home to some intense beauty. It was everywhere we looked. Don't get me wrong, I love it here on Oahu but there is something almost magical about Maui. The day we got there we came across these little gems:

Ray

They call those "Dragon's Teeth." They're some weird rock formation made by lava, wind and surf.

Dozens of little sea urchins.

Later that day we spent the rest of the evening eating dinner and having drinks at one of the many ocean front restaurants on Front Street in Lahaina Town. We slept in a bit and headed off to find the Nakalele blowhole. We have heard that sometimes the blowhole really goes off and geysers can stream over 50 feet into the air. Unfortunately, it wasn't quite that active but really awesome nonetheless.

Don't be fooled, those little pools can hold at least half a dozen swimmers.

Ray

That night we had our anniversary dinner at Mama's Fish House. Their seafood is out of this world tasty. We had vanilla bean buttered prawns, super duper fresh mahi and some lilikoi (passion fruit) creme brulee that Ray said was so delicious that he couldn't stop smiling....and he doesn't even like sweet stuff!

They should just change their name to "Yum."

After dinner that night we walked around for a bit and went to bed early. We had to be up early to catch our tour bus at 2:30 the next morning. We took a tour to watch the sunrise over Haleakala which is a massive dormant volcano. It was SO worth the early wake up. I can honestly say it was akin to a religious experience. The word "amazing" doesn't even begin to describe the it. We were sleepy and freezing but as soon as the sun began to peek out we were completely mesmerized. The pictures don't do it much justice, I think every single one of you should experience this in person at least once in your lifetime. Seriously! Do it!

It begins!

Almost....

There's the sun!

So surreal!

It's so awesome to watch the sunrise ABOVE the clouds.

On top of the world!

The following day we did the famed "Road to Hana." It's a 40 mile long and winding (over 600 turns!) road to a gorgeous little town called Hana on the far east side of Maui. There are so many wonderful sights along the way. There were also little fruit stands with fresh tropical fruit and a little metal box for money as they almost all used the honor system method. I found a stand selling apple banana's which I'd never heard of and they taste just like the name. I also got my hands on the biggest avocado I've ever seen it's literally the size of Romy's head. They also sell a lot of banana bread a long the way too. We also found waterfalls galore, a couple of black sand beaches and even a cave.

That waterfall is 200 feet high!

Unbelievable!

Looks photoshopped, huh?

This waterfall literally took my breath away.

A volcanic black sand beach!

Yes, I am aware that it looks like he's holding poop but I wanted a close up of the sand.

Yet another picture of Ray in paradise. (Someone's gotta be behind the camera!)

A shot from the inside of a cave!

We spent our last night back in Lahaina just relaxing and soaking in all of the awesomeness.

A cruise ship and a half sunken sailboat in Lahaina Town

Front Street

Our last Maui sunset.

And that, my friends, was our fabulous mini Maui vacation. Although we both missed Romy terribly and found our conversations drifting towards her and all of her cuteness, it was really nice be alone together in such a beautiful place. We're having a total love affair with the islands and are making plans to visit the other one's soon. With that I will leave you with much Aloha!

Funny Picture Friday

2010-04-30T14:10:00.000-10:00

September 2009- Romy with someone's halloween wig on.

Watch and LISTEN to this video to the very end.

2010-04-29T23:50:00.002-10:00

Amen. How can a high school kid know so much
and the rest of the world know so little?

Romy's Very First Concert

2010-04-26T10:49:00.002-10:00

We went to the Kokua Festival on Saturday. We had such a great time. I wasn't sure how Romy would do sitting in the sun for a few hours, surrounded by thousands of people and then staying up past her bedtime but she did really great. It's a yearly music festival to benefit the Kokua Hawaii Foundation. They're all about sustainable living, organic foods, locally grown products, recycling and stuff like that. I completely forgot that we live on an island and that a lot of the food we buy and eat ends up shipped here, God knows how long that food sits in a stuffy crate let alone the chemicals that are added to keep them from perishing. So I'm pretty much sold on buying locally as much as possible.

Jack Johnson, Ziggly Marley and some amazing local artists performed. Ziggy even brought his young daughter on stage to sing a song with him, it was really cute. Romy has loved Jack Johnson's music since she was a baby. His music can magically calm down pretty much any fussy baby. I went to the Kokua Festival 2006 on Maui and it was amazing, so I had share it with my family. The show always sells out fast so I was sure to buy tickets the day they went on sale. Even then, all they had left were lawn seats. Looking back, I don't think I would have wanted to sit anywhere else. We laid out a blanket and relaxed with our toes in the grass. Romy danced, clapped and sang all night. She really is a lover of music.

We did end up leaving a little early because some people around us decided to spark up a joint while they were surrounded by kids at a family festival. Ay-yi-yi...... they weren't young college kids either, they were easily in their forties so you would think they would've known better. Some big guy came to the rescue and made them stub it out, but we left anyway. We picked up some sandwiches and some fruit and had a late impromptu picnic dinner on the beach. It was such a fun day.

Romy and Daddy

Anuhea

Jake Shimabukuro

If you haven't heard of him find him on YouTube, he's AMAZING.

Sweet Romy

Massive crowd

That's Ziggy Marley! He sounds very much like his father and when he sang "Redemption Song" it brought the house down.

Jack Johnson! Fantastic as usual!

Romy's Super-Mega-Awesome-Developmental Update

2010-04-21T11:44:00.001-10:00

Romy had a full neuro-developmental evaluation yesterday. She hasn't had one of those since we left Texas 8 months ago. I used to dread going to them because while there were always some positive comments there were many more negative ones. This one was way different. Romy was examined by many different specialists and every single one of them said that Romy was doing fantastic and were very optimistic about her abilities.

She was seen by a child phycologist and social worker. They just wanted to know about any behavioral problems like if she was self harming, unattached and so forth. Luckliy, she isn't but we talked a bit about Romy's separation anxiety and they deemed it pretty normal and not truly concerning until Romy hits 3 or so. They gave us some tips and let us know that as parents, we weren't really helping the problem much. I admit it, we give in to her cries 90 percent of the time. They want us to use key phrases when we leave and come back such as "I'll be right back, and "See, I'm back" so she can learn to associate those words with us leaving but not for good. We have to let her cry, we can't run right back and pick her up anymore. They also suggested putting Romy in a play group and trying day care for at least a few hours a week. Romy starts school (it makes me sad and I don't want to talk about it) in January of next year so we have to get her used to being apart from us so the transition will start now. They like that she's attached to certain people (mainly Mom, Dad and Tita Lisa) because it means she has the ability to form meaningful relationships. So overall, they were pleased.

After that evaluation we saw her neurologist and an orthopedist. Her neurologist is still leaning towards a baclofen pump when she gets a bit bigger and the orthopedist didn't see the need for serial casting or any surgery just yet. She had x rays of her hips and pelvis done and they looked just fine, so no intervention needed as of now. A huge percentage of CP kids end up with dislocated hips and if it ever happens it can be debilitating for life. So she will be monitored closely so we can prevent that from happening. No casting, no surgery, no hip dysplasia? Sa-weet!

The specialist I was dreading the most was the developmental doc. The previous developmental appointment we had didn't go so great at the time, he was concerned about her lack of speech and her need for visual stimulation, apparently signs of developmental disorders. This one was fan-friggin-tastic. First off, Romy is 32 inches tall and a whopping 21.5 pounds! My baby finally crossed the 20 pound threshold and then some! This means she has gained 5 pounds in 8 months. For Romy, that is a HUGE weight gain. Not only that, she is on the charts for her actual NOT adjusted age for height. Granted she's only in the 3rd percentile, but she's THERE. Also for height to weight percentages she's in the 44th percentile, which means for children that are 32 inches tall, she weighs more than 44% of them. Awesome. She's still considered very small, but HEALTHY. Her head growth was concerning when we left Texas, they said she was borderline microcephaly , well she's no longer in that category. He's pleased with her growth curve and she's on track (her own track) with head growth. Woo hoo!

As for developmental skills, he was pretty pleased as well. For gross motor she was gauged at a 10 month level, for fine motor she was gauged at a 15 month level and for cognitive she was gauged at 19-24 months! Think about it, Romy's adusted age is 24 months so that means she is on target for some adjusted age cognitive skills! Her speech is still lagging, but shows huge signs of improvement. She has put together two word phrases recently, ("Did it" and "Me try") it's not quite consistent, but she's getting there. Although she's still considered globally delayed, she is really close to dropping the cognitive delay diagnosis. She will never be able catch up to her peers as far as gross motor is concerned but she has CP, so it's to be expected. She will most likely continue to improve her fine motor skills and eventually have a near normal gauge.

I really could not have asked for a better day. Romy, you are amazing.

Happy Adjusted Birthday!

2010-04-07T22:42:00.003-10:00

Romy, it's your 2nd adjusted birthday!

Today was Romy's expected due date. So it makes her officially 2 years old adjusted! To be honest, I just remembered what today was just a few minutes ago so we'll have to make up for it tomorrow with some yummy cupcakes. I will post some messy cupcake pictures soon.

This date reminds me just how far she's come and just how fast time flies. My sweet baby is in full toddler mode.

For now, I will leave you with some pictures from the past week.

My nephew, Chris, and Romy both love bath time. We literally have to drag them both out.

We spend every Saturday and Sunday morning cuddled in bed as a family. It's my absolute favorite time of the week.

Romy and all of her Easter swag.

Cousins on Easter

Happy Homecoming Day!

2010-04-02T21:18:00.002-10:00

Today marks the second anniversary of Romy coming home from the hospital! She spent 3 loooong months there and I remember how surreal it felt to FINALLY be taking my baby home. To FINALLY lay her in the crib that had taken Ray forever to assemble.

I can vividly remember riding in the backseat with her while Ray drove slower than my grandma and avoided potholes like the plague the whole 2 and a half hour ride home from the hospital. We were so freaked out to have to completely care for this fragile little 4 pound infant. We had been parents for 3 months but that day we truly became parents.

Two years later and we're still freaked out, but enjoying the ride.

Happy homecoming baby girl! You are so loved.

Therapy

2010-03-25T13:20:00.000-10:00

I'm pretty much addicted to reading blogs. I read all kinds but the majority are written by parents of special needs children. I often find out new therapy techniques and activities to try with Romy through them. They've become an invaluable resource.

As most of you know, Romy gets speech, physical, and occupational therapy provided by the state's early intervention services until she's 3. Once she reaches 3 she'll start developmental pre-school and her therapy will probably be reduced quite a bit. Our insurance will cover maybe two additional therapy sessions but that's about it. Not that I'm complaining about our insurace. It's ridiculously wonderful- Romy's 3 quarters of a million (yes, million!) dollar NICU bill? Completely covered. Romy's super fancy $5500 stander? No money out of pocket. It's one of the amazing perks of being a military brat, most things are fully covered.

Nonetheless, I want to get Romy into some alternative therapies that aren't covered by our insurance like music therapy, hyperbaric oxygen therapy, hippotherapy and maybe even adult stem cell therapy. The latter being extremely expensive (Think 20k or more) and would require us to leave the country for treatment. There's a million different things I want to try and as long as it won't hurt or endanger Romy- we'll try it. We aren't looking for a cure we just want her life to be as easy as possible and we're looking to give her every opportunity to get there. Even if none of them help at all, at least we tried. Now that Romy is older, stronger, healthier and as curious as ever, I think it's time to start pushing forward to those types of treatments.

First up, music therapy. Romy responds so wonderfully to music. She dances, sings and is just happier when she hears it. So we met with a music therapist today and she was really great. Romy responded really well to her and didn't freak out when she picked her up and took her to a room that didn't have me in it. Romy is usually mute around unfamiliar people, but was chatting up a storm with this complete stranger. Originally I wanted to place her into a group setting, but decided to pay a bit extra for one-on-one therapy instead. The idea was that she'd focus more that way. She'll go for 30 minutes every week.

This summer we're going to try hippotherapy (there's a link in the previous post) I've researched it a bit and there's a program here on Oahu that provides it for special needs kids at a minimal cost. It's on the opposite side of the island so that might only happen every 2-4 weeks depending on their openings. A great opportunity nonetheless.

I'd like to start Romy on Hyperbaric Oxygen Therapy (or HBOT) within the next 6 months. There's a clinic that offers it close by but it's going to cost a pretty penny. I'd like for her to go 3-4 times a week for an hour each time for a full month.

Last but not least- we have Adult Stem Cell therapy. Some may find this extreme, but I'm talking about adult stem cells. Meaning we would use Romy's own stem cells and not the controversial embryonic stem cells. It's not yet available in the US (although there's said to be clinical trials going on) and we're in a bit of a time crunch. Children the age of 4 and under are the ones whom respond the best to this treatment. Most special needs parents take their child to Mexico, China or Germany to get it done. It's still too much of an inconceivable (monetary wise) goal to worry about right now, but I don't want to cross it off the list completely. We've got some savings in the bank and maybe some fundraisers in our future. Hopefully we can get there.

Thankfully, Romy is growing up during a really wonderful medical science boom. So many different things are available to her that didn't even exist 20 years ago. I think she's gonna be just fine.

It's Cerebral Palsy Awareness Day!

2010-03-20T12:53:00.000-10:00

I was reminded that it was today by another CP mom's blog and I wanted to acknowledge it here. Here's a solid explanation of Cerebral Palsy by the CDC.

Romy is medically described as having a spastic diplegic case of CP. Spastic meaning tight or rigid and diplegia meaning that all four limbs are affected but her legs much more so than her arms. It's the most common form of CP and is seen in many premature children. Most diplegic kids will go on to walk. Some without assistance but many with the aid of a walker or crutches.

Romy's arm and hand use is pretty good as far as CP kids go. It's expected that she'll pretty much have normal everyday use of them. Her neck and trunk muscles are fantastic as well. Her legs and feet, however, are another story. This kid has some strong leg muscle tone. Many times it's difficult to get her to bend her knees or plant her feet firmly on the ground. Her left foot twists inward pretty badly making it difficult to get around in any way. The tightness in her inner thighs pull her legs to cross. I've heard more than one therapist say that they've rarely seen a kid with such tightness in their legs. While it's not the most encouraging thing to hear, it does propel me forward and make sure Romy gets good leg stretches, challenging therapy and plenty of time in her AFO's. There has been some talk about serial casting to try and reduce how much her feet turn inwards. She also (finally) received her stander yesterday. She currently is receiving physical, occupational and speech therapy anywhere from 6-8 times a month. I'm meeting with a music therapist in a week to try to get her in some music therapy which helps with speech and social skills. We're gonna try hippotherapy this summer. Hopefully with all of these combined, we can get Romy to reach her maximum ability- whatever that may be.

A parent with a non-disabled child may look at us and feel some sort of pity. They see Romy struggle or they see our frequent appointments and that's it. In fact when I've told people that my child has cerebral palsy some actually apologize. For what? I don't really know. It's a bit offensive that they feel sorry for us. We're lucky- actually not just lucky but blessed. Romy nearly DIED in utero and at birth. If given the choice to have a special needs Romy or no Romy at all, which do you think I would choose? I have a sweet, good natured, smart, inquisitive and beautiful child, what's so sorry about that?

These are pictures of Romy in her stander. She uses it for 20 minutes twice a day and we'll slowly work up to an hour twice a day. This will help her muscle and bone strength and development. She has to be able to stand before she can walk! She doesn't really like being strapped into it, but we'll see how it goes.

My Yummy Baby

2010-03-19T23:06:00.000-10:00

My baby is delicious. She's so cute I could eat her. Agree?

She loves her rocking horse!

and remotes....

It's pretty much her favorite toy.

Her fine motor skills are improving!

Today, I found out she likes edamame...who knew??

I love when her hair is wild like this!

I love you my sweet girl!

Slow Down!

2010-03-15T21:41:00.000-10:00

When did this cute little red headed infant.......

Turn into a beautiful, brunette, tambourine playing, cookie eating toddler?

I miss the little squishy baby of yesterday but I can't get enough of the funny, cuddly toddler Romy has grown to be.

Sippy Cup Master

2010-03-06T20:19:00.000-10:00

Romy has officially mastered the sippy cup! After what has seemed like FOREVER she has finally figured it out. Here's the master at work:

Her cousin was so proud of her and gave her a big ol' kiss.

Here's said cousin with the biggest strawberry known to man.

Today we were invited to a physical/occupational therapy convention by the Easter Seals. We were put in a room that was lined with mats covered with toys. Romy's name was on a mat in the corner with two really sweet therapists who went gaga over Romy's glasses and curly hair. They worked on her for a bit while one of the top physical therapists in the country (her name escapes me) made her way around the room to comment and offer suggestions. She was impressed with Romy's easy going and happy nature. She invited us to 3 more FREE visits. Gotta love free therapy! She's going to demonstrate on Romy in front of other therapists with the newest and latest techniques. I'm pretty excited to learn some new stuff!

On a much different note, I wanted to comment on the dreadful "R" word. The word "retard" is a horrible and hateful word. When I was younger, (and dumber) like most kids, I would use it as an insult. For example, "Oh, you are such a retard!"or "What are you, retarded or something?" This was always said to someone of normal intellect. I'm sure you've heard it used like that before. It's everywhere, movies, magazines, TV and pretty much every other media outlet even politics. When did this become okay? It's used in such a mean spirit and worst of all, it's used as a slur to a group of people whom can't defend themselves. Ever since Romy was diagnosed with cerebral palsy, that word angers me more and more every time I hear it. Romy hasn't been labled as such but nobody knows for certain if it's in her future or not. It would kill me to hear someone making fun of her and using that word. So friends, won't you stop using this word and educate others that do?

The "R" Word.

2010-03-06T09:55:00.000-10:00

Spread the word to end the word. Have you pledged?

I'll post more about this later, we've got a really awesome PT demonstration to go to in a bit! So, to hold you over here's a quick video of Romy dancing to Lady Gaga. She LOVES her some Lady Gaga.

Romy Lately

2010-02-25T20:54:00.000-10:00

Sigh, where to begin.... I guess I'll just jump in head first. Romy's Neurologist has referred us to see a geneticist. He wants to get to the bottom of Romy's puzzling symptoms. As some of you may remember, we went through all of this last year. Blood test, chromosome analysis, urinalysis, poop samples, you name it. They all yielded normal results. I'm not sure what they expect to be different this time around. We shall see. Prayers please?

Other than that, Romy got her new glasses! She looks so grown up in them! Check her out:

Look who's mastering the sippy cup!!!

That's all the new stuff. Have a great weekend!

Worst Blogger Ever.

2010-02-18T23:44:00.000-10:00

I know, I know, I haven't updated in what seems like forever. My Mother finally called me this morning to complain about the lack of posts. So here you go, Ma!

Romy is doing fabulous. Her eyes are still healing, especially her right eye. It's still red in the inner corner, but her doctor is pleased with her progress. We ordered her a new pair of glasses. Her prescription hasn't changed as of yet, but we're hopeful.

The same ophthalmologist that treats Romy is also treating Ray. He's going to get his crappy vision fixed before his next tour in Iraq. Most soldiers have Lasik or PRK surgery, but Ray's vision is so poor he has to have a different kind where they pretty much insert a permanent contact lens into his eyes. Anyway, during his pre-surgery exam she noticed that his optic nerves are bulging. It's most likely something that he was born with and not problematic but could also be a sign of something more sinister, a brain tumor. He had an MRI a few days ago and we'll know something next week or so. We're both pretty confident that it's nothing major but it still scares the hell outta me and we would appreciate your prayers. Between Romy and Ray, they're gonna drive me nuts. Really they are. Not to mention that Ray left early this morning to train in California. Booooo!

On a lighter note, we had a great Valentine's Day. We had a fantastic beachside dinner the night before at great restaurant in Waikiki and spent the next day lounging around as a family. I also got some pretty flowers and an even prettier bracelet. It's super sparkly. I can't believe he's going back to Iraq so soon, it's bumming me out big time, but we'll keep on truckin'.

Anyway, ready for some pictures??

Cutest pineapple in the world!!

She's a big fan of combing hair, anyones hair

Before strabismus surgery

After strabismus surgery. Sorry I couldn't get a better picture, she wasn't being cooperative.

Yummy Toes!

2010-02-03T19:22:00.000-10:00

Romy's Cerebral Palsy make her leg muscles super stiff and not very flexible at all. This means she never went through the toe eating/sucking phase that non-CP babies go through as it is too difficult for her to get her feet that high. Until recently.

Take that Cerebral Palsy!!!

On a non-foot eating note, Romy impressed us at her last speech therapy appointment. We were working on picture identifying. She was asked to identify a baby doll and a ball and she got it right every single time! I was floored, I really didn't think her vision was good enough (they were tiny pictures) let alone her cognitive ability. I kept making her do it just to be sure that she wasn't getting lucky but she got it right well over 10 times. We also noticed that she recognizes the "If you're happy and you know it clap your hands" song just by hearing the first few notes. She has a toy that plays about 10 different songs and she doesn't react to any of them but that one and will start furiously clapping her hands as soon as she hears it before any lyrics. My little musical genius.

She has a few new words too. Baby, (Bah-bee) I-yo-yo (I love you), hug (she constantly asks for one) and hot (it's what she calls her food).

Romy can now comb her hair, (and mine too) it's pretty adorable. Also if you tell her that she's pretty, she'll look at you coyly and run her hands through her hair. You should see it, she's such a little girly girl. When she's sitting with me while I put on make up, I'll take a clean make-up brush and run it along her cheeks, she giggles her face off.

As for her physical stuff, she's starting to take steps (while I'm holding her up) with her braces on. She's still extremely unstable and scissors like crazy, but it's a small step in the right direction. The look on her face is pure determination.

Her eyes are still healing. They're bright red, but the swelling has gone down. I have noticed that the nystagmus is completely gone (hopefully forever) and she's tracking MUCH better. Her left eye is seemingly perfectly straight while her right eye periodically turns slightly. Hopefully at the end of the 3 month waiting period this will have worked itself out. We're patching again and Romy couldn't be more pissed about it. She also broke her glasses, her very expensive glasses....grrrr. It's only the arm and the little rubber ear thingies, but I can't seem to find replacement parts. Right now she's still wearing them but they're taped up like crazy. I'm hesitant to buy a new pair until I get her prescription read again, since there's a good chance it has changed since the surgery. I don't understand why baby glasses that consist of much less material are 3 times as expensive as adult glasses. I just don't get it. Anyway, here's a picture of her eyes now:

That's all folks, I will update again soon!

Strabismus Surgery Update

2010-01-27T13:15:00.000-10:00

**The picture attached to this post is not pretty, some might even find it disturbing. There, I warned ya.**

Romy had her strabismus surgery this morning. All went well and she is now sleeping peacefully. Not only did they re-align the muscles but they also did botox injections directly into the muscles as well. I can see a slight difference already but because of the botox, it can take up to 3 months for final results to show. We're really hoping that she won't have to have another surgery but we've been told that it happens quite often.

Thanks everyone for their thoughts and prayers, Romy is so loved and we can't thank you guys enough!

Da BEACH!!!!

2010-01-24T17:21:00.000-10:00

We spent today up on the north shore, our favorite place! It was a bit overcast but still warm enough to dip our toes in the ocean and play in the sand. I also had some of the best Thai food I've ever had....out of the back of a catering truck. Sounds sketchy, but man it was tasty and surprisingly great quality. Romy actually ate quite a bit of tofu, fish and pad thai, we're hoping to break her free from endless meals of grits, grilled cheese and chicken nuggets, so we're trying to get her to eat different things. Usually, she refuses anything that isn't cheesy or in nugget form, but today, we were victorious.

More!

2010-01-19T22:50:00.000-10:00

As some of you may remember, quite some time ago we wanted to try teaching Romy some sign language. Well, we were never ever consistent and eventually stopped trying all together. Then, the other day her speech therapist stopped by and worked on signing "more" with Romy. They were at it for about 10 minutes and something clicked and Romy has been signing "more" consistently ever since. She signs it when she wants another bite, another sip, more music, more time in the bath, for everything! It amazes me really, now we're kicking ourselves for not sticking to it. I mean she could have dozens of signs down by now.

Anyway, Romy's eye surgery is in 1 week! Gahhhh, I'm nervous. Her going under anesthesia always has me scared. Just keep her in your prayers, k?

Here's a few pictures from our weekend. We went to the Pali lookout. The view was amazing, and the pictures really don't do it any justice. It was crazy windy, and was whipping Romy's little pigtails around, she thought it was hysterical.

Haiti

2010-01-14T10:41:00.000-10:00

By now we've all heard about the devastating earthquake. It breaks my heart to know that husbands lost wives, children lost parents and that friends have been lost. It also scares me to know that it could have just as easily happened here. I found this website to donate towards the relief efforts. I know my blog isn't a raging popularity, but I do know that people read it and I hope you guys will consider donating something, anything but most of all I hope you will say a prayer for Haiti.

You can even text in a donation. Text the word, Yele, to 501501 to donate $5.00. It will be charged to your next phone bill.

Isn't She Lovely?

2010-01-13T00:02:00.000-10:00

My beautiful baby girl is growing up! She's 18.5 pounds and just under 32 inches tall. Her personality is really starting to shine too! Her extreme separation anxiety is starting to melt away and she's as goofy as ever. She's obsessed with noses and is constantly pinching anyones she can get her hands on, even the dogs nose. She "sings" and dances to music and is especially fond of Lady Gaga and Jason Mraz.

Although her speech is exploding, her speech therapist is going to start looking for augmentative devices appropriate for her. Although I'm fairly confident that she'll get the hang of the whole talking thing, it can't hurt to try. We've noticed that Romy has a difficult time with words that contain the letter M or N which are usually the easiest to pronounce, yet she can say words with a K or C sound which are more advanced. They put her at a speech level of about a 16 month old which is pretty much the same as the rest of her cognitive ability, not too bad for a former 25 weeker with cerebral palsy. Cognitively, she's about 4 months (adjusted) behind her peers but she's been closing that gap more and more every time we revisit her abilities. At one point she was 10 months behind!

We've been going on nightly walks and that's when she really starts going off, she babbles and waves and says bye to trees, dogs, people and passing cars.

As for an update on her medical issues....sigh....here goes:

Gastro- As you may remember Romy had two GI study's done, both with conflicting results. Since her eating has improved quite a bit and she has steadily put on weight, we've decided to hold off on any further testing or diagnosis. Honestly, I'm beginning to think that her tummy is just fine and she was sensing MY anxiety over her eating (or lack of) habits. Once I relaxed and let her set her own pace, she just kind of handled it herself. She has days where she doesn't eat much and days where she won't stop stuffing her face.

Neuro- Romy got another rounds of botox a few days ago. He DOUBLED the amount this time in hopes that it will actually have some sort of effect. Last time was a complete bust. He also upped her baclofen just a smidge. Ever since, her legs have been significantly looser and she's been standing longer and with better posture than before. I'm not sure if it's the botox or the baclofen, but either way it's great. She continues to do pretty well with her braces and was standing up holding onto the couch and *gasp* took one itty bitty side step and promptly fell flat on her butt. I was completely floored and I was so happy that her therapist was there to witness it with me. I think we scared her a bit with our screaming and clapping.

Ophthalmology- Romy's strabismus surgery has been bumped up to January 27th, as in just a few weeks away. The doctor thinks that Romy isn't using her left eye at ALL. Something that I don't agree with 100% but I still think the surgery is a good idea. If I completely cover her right eye, she's still able to track with her left so it kinda debunks what the doc was saying, but hopefully it will improve the vision in her left eye, which is the weaker of the two. We're also patching again. The only thing that makes me nervous is that Romy's strabismus is only evident SOMETIMES, there are many times when you can't notice it at all. I worry that loosening the muscles will cause her to turn her eye outward vs. inward. Pray for good results, k?

So there you go, a big ol' fat update on all things Romy. She's doing pretty fantastic if I don't say so myself. Oh and as always, here's some very recent pictures of my favorite girl:

She's been all smiles lately.

A Decade

2010-01-05T12:38:00.000-10:00

It's officially 2010! Happy New Year everyone! Every year I say "Wow, I can't believe it's gonna be 2007, 2008, 2009," and so on. This year was no exception. Holy Moly, it's 2010! It just sounds so futuristic. I feel like we all should have jet packs by now. I want a jet pack!

Anyway, since we're beginning a new decade, I decided to look back on the previous decade. Here's me 10 years ago, I was 16 and had just started dating Ray:

This was a little less than a decade (I think 8 years) ago, but it's the closest picture I have of Ray 10 years ago:

That's little Gabrielle (my niece) in his lap, wasn't she just a cute little button? I can't believe she's starting middle school next school year!

It was a pretty good decade! I got married and had a baby. I've lived in 5 (North Carolina, California, Florida, Hawaii and Texas) different states. I saw the Amazon and Machu Picchu and ate Alpaca. Ray has been to England, survived a year in Iraq (and I survived a year without him around) and earned a combat infantryman badge. He also did 4 years in the Marine Corp. He has passed the E-6 board and will be promoted any day now.

A lot of exciting things have happened and I'm curious to see what the next decade will bring. I'll be 36, Ray will be 38, and Romy will be 12! Hopefully by then we will have another little family member.

Anyway, we started the New Year with a hike up to Manoa Falls. Romy even came along! Ray hurt his Rotator Cuff so my brother volunteered to 'wear' Romy the entire time. What a good uncle! Romy loves him so much and calls him "Un-co."

It was a two mile hike in a bamboo rainforest, there were little waterfalls and bamboo trees everywhere. Overall it was fun to get outdoors and hang out with family. Romy really loved it too. She was silent and just gazed around the whole time.

Here's a few pictures of the last few days and our little adventure:

Romy and Brobee

My brother, Kane, the baby-wearer. Oh, and that tree behind them? That's the tree that Charlie was hung from on the t.v show, Lost.

Gabrielle climbing a massive tree.

Two little ninjas.

A Very Merry Christmas and My TWO Year Old

2009-12-27T19:20:00.000-10:00

Our Christmas this year was pretty amazing. Definitely one of the best I've ever had. It was our very first Christmas together as a family (Daddy was in Iraq last year) and also our first one in Hawaii.

Our first REAL Christmas tree.

Romy and Chris tearing into gifts.

What's Christmas without a little beer pong? This is YaYa, she was pretty good by the way.

Daddy and Papa Goat, do they look alike or what?

Today was also Romy's BIRTHDAY!!! It's official, I now have a two year old! Two years ago, my life was completely changed and we were blessed with a wonderful little girl who warms our hearts everyday. I cannot wait to see what next year has in store!

Since we already had her birthday party a few days ago, we just spent a mellow day the beach. We packed up some lunch and some cupcakes and played in the sun. Romy had a blast, she truly loves the water. We even saw at least a dozen sea turtles! Gotta love Hawaii!

Here's one of the many turtles we saw today.

Romy and Dad

My beautiful TWO year old!

Cupcakes!

Gotta love that smile!

Isn't that a huge turtle??

It's Her Party, She'll Cry If She Wants To....

2009-12-24T13:31:00.000-10:00

Romy had a birthday party yesterday! Although her actual birthday isn't for a few more days, we wanted Papa Goat and YaYa to be a part of the celebration before they leave to go back to Florida.

For some reason Romy was extremely crabby and clingy. I think maybe she was a little overwhelmed as we had a house full of people and lots of noise. She even had two little friends attend! We played some games, ate some food and she racked up on lots of great presents.

Romy's cake, I made it myself and it turned out pretty awesome, I think I will try to make her cake every year.

She was upset because she was in her high chair and nobody was holding her....sigh....

She was all smiles playing with her new toys though.....

I cannot believe that she's turning 2!! It has been a truly wonderful year! She has made some really huge strides and is a sponge for picking up new words and actions.

Romy's words:

Dada

Mama

Ilk (milk)

Uck (Duck)

Bash (Bath)

Spash (Splash)

Tata (Tita or Aunt)

Ah-Pa (Grandpa)

Papa

Uh-Oh

Ba (bye)

Bawww (Ball)

Dawww (Doll)
Danshh (Dance)

Actions:

Sitting!

Pulling to Stand!

Army crawling (very short distances)

Independent Play!

Touchdown! (raises both hands in the air)

Identifies face, hair, toes and sometimes tummy

Claps

High-Fives

Hugs

Kisses

Waves hello and goodbye

Pushes buttons (she can even effectively activate cellphones and has called 911)

Puzzles (She doesn't put them in the right place but will try to jam it into place forever)

Feeds Herself! (finger feeds)

Shakes Hands

Blows Kisses

-Height: 31 inches tall

-Weight: 18 pounds (You are long and very lean. You're all legs, Romy)

-Favorite Foods: Grits, chicken nuggets, fries, oranges (especially the peel for some reason), banana, grilled cheese, crackers, sweet potato and salt-n-vinegar potato chips

-Foods you dislike: any kind of melon or anything green

-Favorite Activities: Reading books and turning the pages, being tossed around by Dad, any kind of musical instrument, playing with cell phones and remotes, playing in the sand and ocean, and bath time.

This year you also completely weaned yourself off of the bottle and you are now 100% table food fed!! You moved all the way to Hawaii and you like it a lot. You got a doggy! He's quickly becoming a partner in crime with you and although you pull his ears and torture him, you also lovingly pat his head and feed him food off of your tray.

Wow! What a year, I am in such awe of her and all she does. Just one year ago she wasn't vocalizing much more than a random squeal or mumble, she couldn't sit on her own and was even having a tough time keeping her head steady for long periods of time. Has she come far or what? She's a very special little lady and I can't wait to see what next year will bring for us as a family. Daddy is leaving for Iraq again in the summer and I hurt for him knowing that he will miss so much. Having him around has helped us both tremendously, my sanity and Romy's development. We will keep on truckin' though.

Romy, we are so blessed to have you in our lives. You have made this world a much brighter place. We love you sooo much little munchkin!

Romy at 1:

Romy at 2:

Luau!!

2009-12-22T00:23:00.000-10:00

Ray's whole family is in town for the holiday's and his sister and brother-in-law treated us to an amazing ocean front luau. We had a blast!

Romy got to meet Santa again, and this time he was dressed up in shorts, an aloha shirt and some slippers! Unfortunately, Romy wanted nothing to do with him and cried the entire time. Everyone felt so bad for her, but I thought it was hilarious, does that make me a bad Mom?

Ray, enjoying the food and half naked hula dancers...

and the girls got to enjoy this.....

My babies and a gorgeous hawaiian sunset.

Ho! Ho! Ho!

2009-12-15T23:46:00.000-10:00

Romy saw Santa today!

She was not excited.

She warmed up a little once he threw a shaka .

These pictures (click to enlarge) are kinda crappy, I forgot to use a flash. I'm thinking about taking her again tomorrow to get some better ones. Anyway, other than terrified babies, all is well in the Schuck house. My little brother, Kane, arrived from North Carolina the other night. Ray's little bro will be flying in from Florida tomorrow. His sister has moved back here from Texas, and her husband is home for the next few weeks from Iraq. Romy's YaYa and Papa Goat will be here soon as well. Good times ahead!

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

2009-12-09T19:38:00.000-10:00

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

2009-12-05T14:41:00.000-10:00

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

2009-12-03T22:00:00.000-10:00

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.

2009-11-30T16:43:00.000-10:00

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.

2009-11-25T23:17:00.000-10:00

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

2009-11-24T18:42:00.000-10:00

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

2009-11-21T17:20:00.000-10:00

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!

Snot Face

2009-11-19T22:27:00.000-10:00

Romy is getting over some sort of sickness. Thankfully, she's handling it well and only had a low grade fever for a few days. She just can't seem to shake her runny nose though. Her appetite has shrunk some, but that's to be expected.

Although she's been sick, she still continues to develop right before my eyes. She's starting to become much more aware of what's going on around her and vocalizing it more. For example, when she sees me talk on the phone, she immediately says "Dada?" It's like she wants to know if I'm talking to her Daddy or not. Also, we were at my sisters house watching the fight (Pacquiao!!!!) and Romy was surrounded by 3 toddler boys. One of the boys dropped his toy on the floor and Romy said "Uh-oh!" Not to mention that she continues to say "up" when she wants to be held. She's catching on to this whole communicating thing. Slowly, but surely.

She has also been much more cuddly than usual, especially around bed time. I think she uses it against me so she can stay up later. It works.

We still haven't received her DAFO's, but hopefully within the next week or so. She's also getting fitted for a stander in December! I'm pretty excited about it. I think Romy will really benefit from it and I can't wait to take her on walks in it. I know it looks very "equipment like," but Romy will only be using it for standing. Not only will it help develop her joints and sockets, but it will let her see the world in an upright and standing position. Who knew there were so many benefits by just standing!

The Baclofen she began taking a few weeks ago is working beautifully. I was very hesitant to even try it, but I'm very glad I did. Romy's legs are loose and have near normal range of motion. There's also virtually NO resistance in her ankles either. I was really worried about the side effects, but I'm happy to report that she barely has any. If anything, she drools a bit and relies on her hands to prop herself up more, and even those are hardly noticeable.

Here's a few pictures from the last few days. Pay close attention to her hair. It's been getting extra crazy lately. Poor thing inherited my hair. It doesn't know if it's straight or curly. After a bath, I give it a good comb and as the day and night wears on it starts curling up into strange looking rooster comb-esque hairstyle. We call it the Romy. It's going to be new "it" hairstyle.

At this point, we just try to keep it out of her face

Sitting "criss cross apple sauce," according to my sister it's not PC to call it "indian style."

I think her posture is improving.

She loves, loves, LOVES books. She could "read" them all day, and recently learned to turn pages.

"The Romy," in all its glory.

Bath time

15 minutes after bath time....

Happy Veterans Day!

2009-11-10T21:27:00.000-10:00

Thanks to all those who serve! With special thanks to this guy......

The military has always been a part of life for us. Ray and I are both Army brats and have lots and lots of relatives who have served or are still serving. Romy's Uncle Kris is deployed as we speak! (We miss you and be safe!) This is a very important day for us and we're so grateful for all of the men and women who fight over there to keep us safe here, as well as those who fought long before our time. Thank you! Thank you! Thank you!

I feel like I should also mention the events that very recently took place on Fort Hood. As you guys know, we moved from there just five months ago. I remember vividly driving Ray to that exact same building and I'm pretty sure he has stood in that exact same room where the shooting took place. It was only a mile or so from our home. It truly breaks my heart. Those soldiers were home, they were supposed to be safe. God bless'em.

A Puzzle Named Romy

2009-11-09T22:47:00.000-10:00

Romy had a developmental appointment today. It was her first since May. It was kind of a roller coaster visit. First off, I really like her developmental doctor, much more than her previous one anyway. He spent nearly two hours with us, watching and playing with Romy and he hinted that he had a special needs child himself which oddly relieved me. I felt like he understood us.

It started off great, he was very pleased with her strength and cognitive ability. He charted her cognitive abilities at 14-18 months. Seeing as she's 19.5 months adjusted, I think it's pretty damn good. She's improving and catching up everyday. He's pretty concerned about other stuff though. Like her size, consistent delay, (even though she's doing some catching up, she's still considered globally delayed.) and most of all, lack of speech. (Hello? THANK YOU, I've only been trying to tell everyone for months now!)

You see, Romy is a bit of a puzzle. She's very small, she doesn't speak as well or as much as she should, her pupils are drastically different in size, she's delayed, and her eating is a forever battle. These things could very well be caused by cerebral palsy, her premature birth, her genes or a combination of some or all. Or, by none of the above. It could be some crazy underlying problem. This is what her doctor's have said anyway. They want to do more tests and blah, blah, blah. If you ask me, I think everything can be attributed to CP and her prematurity, she had a really rough start, you know? Yet, I'm no doctor, so time and testing can only tell. There is no official game plan as of yet, he wants to gather a team and discuss everything with different specialists first, but in the end does any of it really matter? I don't really think so. We won't love her any less so, I'm trying not to stress about it.

Alright, well back to the plus side. Romy continues to eat well (I'm hesitant to even mention it, because every time I do, she slides right back down to eating nada!) and has gained half a pound in 2 weeks which puts her right around 17.5 pounds. My hope is to have her weigh 18.5 pounds by her second birthday, which is about 6 weeks away.

Ray's been gone doing some training lately, so it's been just the two of us. Although we miss him, it's kind of nice to have Romy all to myself. Usually when Ray's here, she's attached to his hip. She won't let him go anywhere without her. When he would come home she would literally try to jump out of my arms to get to him! Such a daddy's girl!

Welcome to Holland

2009-11-05T21:59:00.000-10:00

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

2009-11-03T15:46:00.000-10:00

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!

2009-10-30T16:54:00.001-10:00

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

2009-10-27T12:38:00.000-10:00

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-

2009-10-21T14:15:00.000-10:00

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

2009-10-19T13:16:00.000-10:00

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

2009-10-16T14:51:00.000-10:00

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

Upper GI

2009-10-14T11:46:00.000-10:00

Romy had her upper GI study today. My GOD was it traumatizing for the poor girl. First, I had to starve her. She hadn't eaten anything since the night before and it took FOREVER for them to call us back to the x-ray room. She wasn't crying with hunger pangs, but she was getting fidgety and a little whiny so I knew she would have a melt down soon. The doctor and nurses were great and played with Romy until everything was set up.

Then, they proceeded to hold Romy down and pull her hands above her head so they could get a clear shot of her GI tract. Romy has CP, although her arms are not affected much, they are still affected. By stretching her arms further than they naturally go they were hurting her. Which in turn hurt me =( She was screaming while they were shooting barium down her throat, then they'd flip her around and do it again. She had barium coming out of her nose along with snot and tears, just staring at me, screaming her little lungs out! She was terrified and so pissed that I wasn't helping her. It lasted 10 minutes then I picked her up and she melted in my arms. 10 seconds later she was fine.

I don't have the full results, but they did say that her anatomy looks fine and everything is where it should be, but it looks like her food doesn't digest fast enough. This would explain why she doesn't really get hungry often and fills up really fast. I have heard of this before, and I believe there's medicine to treat it, but I'm not 100% sure what treatment would be if this is the case. We'll see though.

I turned 26 yesterday! Yikes, I guess this is officially the last year of my mid-twenties=)

Here's Romy with her very first doll, we named her, Eleanor Rigby.

She's becoming a fast favorite for Romy. Now she'll wiggle over to her, pick her up and plant a kiss on her face. Very Cute stuff.

Cute cousin bath time! They will hate us for this =)

Her smile is so crazy!

Romy the Magnificent

2009-10-08T22:08:00.000-10:00

I realized that in my last post I was being a bit of a crybaby. Yes, having a former preemie/cp kid is tough. I never claimed it was easy, but Romy always finds some way to say "relax, Ma!" Today was marked by some cool new things. She now uses the word "up" when she wants to be picked up. It's pretty much the only word she uses to tell us what she wants (aside from "Dada" or "Ah-Pa" which is her word for Grandpa.) She has been trying to repeat nearly everything I say all day. She even said "Tita" which means Aunt in Tagalog. Even if she didn't say some words correctly, she said the appropriate amount of syllables and in identical cadence, which is good enough for me! At least she's trying!

She also played by herself in the living room for a solid half-an-hour (sitting unassisted I might add!) which is pretty unheard of. She usually wails the second I'm out of sight distance. I came back to see her tugging on poor Sammy boy's fur. The poor dog was just laying there taking the abuse until she yanked too hard and he pulled away whimpering.

That's not it either, while doing some stretching with her, she held the crawling position (hands and knees, not army crawling) for a solid 2 minutes without any fussing. Usually this is too painful on her spastic hamstrings to withstand, but she was a trooper and hung in there. She's also getting pretty good at standing up, assisted of course, but with her feet planted firmly, legs shoulder width apart and a straight back.

She also had her very first dentist appointment today! He said overall her teeth look great, but her teeth are a bit close together. Usually baby teeth don't even touch, but her top and bottom fronts do. He said it may mean that she'll need braces later in life. Which is fine. I remember WANTING braces when I was young.

Feeding was a tad bit better, not much but I'll take it. To give you some perspective, for dinner she had 4 ounces of Pediasure, an ounce or so of apple juice,a spoonful of peanut butter and 4 tater tots.

Although her food intake could be better, I think she got wind that I was kinda bummed, so she decided to cheer me up by hitting a few milestones. Thanks Romy, you really are the best =)

Knocked out on the way home.

Little Einstein

Banana's. To eat or not to eat?

Daddy and Me!

Romy in "The Apparatus"