3 Years of Lumpia

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!

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???

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

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!

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?

 

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

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

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.

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

Ray deployed and it stinks. We miss you Daddy!

Wordless Wednesday

Da Zoo

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

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.