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.