I LOVE Romy's Dirty Shoes!

Because it means she's WALKING.

What a Year......

It's been almost a year since I last posted.  I'm upset that I let so much time pass, but it's been a helluva year. Lots of good, some bad, but as of today, it's a happy day. Today is my 29th birthday. It's officially the last year of my 20's. I'm kind of excited about ceasing to be a 20-something, even though the sound of saying "I'm 30" just does not seem real. At least I've got an entire year left of saying (and possibly shouting from the rooftop) "I'm in my 20's!"

Anyway, I guess I should back up a bit and get caught up. When Romy and I moved back here to NC a year ago it was difficult. I didn't really want to come back and it was just very stressful on all sides. Money was tight, the divorce was nearing finalization, Romy had to get set up with brand new doctors, specialists, teachers and therapists. Then in April my father in California (not stepfather) was diagnosed with liver cancer. He passed away 9 days later.

I haven't written much about my father and there's plenty of reasons why I didn't, but none of them good enough reasons. My father and I weren't very close growing up. When I was younger he'd fly my sister and I out there to visit him and I have fond memories of those times. However, as I got older the distance grew. He wasn't a perfect man, parts of his childhood sucked and he had his demons as we all do, but underneath it all there was a man who was extremely loving. I didn't always think this of him, but about 2 years ago we saw and spoke to each other for the first time in several years. I had some anger and bitterness built up, but once I saw him and saw the condition he was in, it melted and I just desperately wanted to help my father. My sisters and I tried, we really did, but in the end his lifestyle caught up with him and ultimately took his life.

Romy had never met him and when he was diagnosed my sister, Lucy, who lives close to him informed us that it was bad. Extremely advanced and untreatable at that point although my Dad brushed it aside perhaps to prevent us from feeling sorry for him. My sister Lisa, Romy and I were on flights to see him a few days later. When he passed he was at home, surrounded by his girls and loved ones. I'm so grateful for the time we shared together although I wish more than anything that I would've made more of an effort to build a stronger relationship.

After he passed my sisters and I were packing up his belongings to get all of his stuff moved out of his place and we came across some really amazing things. He kept every single letter or note either of us ever wrote him. He had a suitcase filled with love letters from his past, apparently he was bit of a lothario in the 70's. He had pictures he drew, poems he wrote, yearbooks, documents, photographs, even his boy scout card. There was a lot of history that he held on to. I found my Mom and his wedding album. It was incredibly weird to see them kissing in the pictures as I was barely a toddler when they split and don't really remember them together, haha! It was kind of fun to sift through all of that. There were things about my Dad that I never knew. He always came off as a bit of a tough guy with his bandanas, signature beard, and muscle shirts. However, at his core he was sensitive, a romantic, and sentimental. Not unlike myself at all.

His memorial service was beautiful. So many people attended that there weren't enough seats in the chapel. Everyone was decked out in Raider's gear, his favorite football team.  He would've liked that. Several people stood up to share stories and pay respect. They had such wonderful things to say about him. It was incredible to see how loved he was.

Today I listened to a voicemail he left me last year on my birthday over and over. He is so missed.


                                                                                                                    

Little me, Dad and his ridiculous mustache

Okay, now for some much more cheery news.......drum roll please........Romy has taken independent steps in her gait trainer!!! Woo hoo! For a very long time she needed help to push her along, and help her bend at the knee, but just the other day, (on 10/11/12- kinda cool) at physical therapy, she walked clear across the hallway a few time and THEN all the way from the building to the car. I was pretty shocked. How could she have gone from barely taking steps to taking several hundred overnight? Her SWASH brace is the answer or I should say is NOT the answer. I've only ever put her in her gait trainer with her SWASH, because well you're supposed to. However her teacher forgot to send it home from school yesterday so we went to PT without it. Apparently the SWASH was hindering her ability to walk. Maybe because it pulls with so much pressure on her adducters? Maybe it was too much to overcome to be able to focus on bending at the knee. That's just my guess anyway. Who knows how long she's had this ability! So now we're going to really focus on building more strength and balance to get her to be able to steer better and stand straighter. I'm so incredibly proud of my little monster!

Easter 2012

Still has that killer smile!

Last day of Pre-k, year 2

In other Romy news, she's still tiny at just over 30 pounds and roughly 37 inches tall. She's in her 3rd year of Pre-K at the school I attended as a child and she's been placed in a classroom where the majority of the kids do not have a delay or disability. While she's still definitely delayed, she is currently going through a burst of development. She can say a few short sentences and has too many words to count. Her speech is still pretty garbled and only a few can speak her language, but she gets her point across pretty well. While she just started using her gait trainer independently, it's still pretty new to her so she uses her wheelchair as her main form of ambulation. It's a manual chair and I really don't think she'll need an electric one. She's really great at maneuvering herself. As for her interest, they're still mostly the same. She loves Yo Gabba Gabba, Elmo, dolls and the Wonder Pets. She's also starting to get into blocks and legos. Romy is a pretty social kid too which she does not get from her shy mama. Also, while she's normally very sweet and loving, this kid has a temper and can get straight up mean if she doesn't get her way. We're working on it, haha.

So overall, she is continuing to kick ass and take names. That's my girl!

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?