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!