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!