Four Years of Lumpia

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!

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

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

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

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

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 fazed 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

Bursting With Excitement!

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.

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

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

Long Overdue Bombshell

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!

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!

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

Enough Already

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

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

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

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

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

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

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

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

Rant done.

I hope nobody ever says such hurtful things to her.

Genetics Madness

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

Any Kiddo Need an iPad?

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

I'm officially a g-tube Mom.

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

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

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

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

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


Here are a few before and after pictures:

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

The day after surgery.

Tita Lisa came to visit everyday!

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

A Bit of Inspiration

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

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

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.

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!