Funny Picture Friday

September 2009- Romy with someone's halloween wig on.

Watch and LISTEN to this video to the very end.

Amen. How can a high school kid know so much 
and the rest of the world know so little?

Romy's Very First Concert

We went to the Kokua Festival on Saturday. We had such a great time. I wasn't sure how Romy would do sitting in the sun for a few hours, surrounded by thousands of people and then staying up past her bedtime but she did really great.  It's a yearly music festival to benefit the Kokua Hawaii Foundation. They're all about sustainable living, organic foods, locally grown products, recycling and stuff like that.  I completely forgot that we live on an island and that a lot of the food we buy and eat ends up shipped here, God knows how long that food sits in a stuffy crate let alone the chemicals that are added to keep them from perishing. So I'm pretty much sold on buying locally as much as possible.

Jack Johnson, Ziggly Marley and some amazing local artists performed. Ziggy even brought his young daughter on stage to sing a song with him, it was really cute. Romy has loved Jack Johnson's music since she was a baby. His music can magically calm down pretty much any fussy baby. I went to the Kokua Festival 2006 on Maui and it was amazing, so I had share it with my family. The show always sells out fast so I was sure to buy tickets the day they went on sale. Even then, all they had left were lawn seats. Looking back, I don't think I would have wanted to sit anywhere else. We laid out a blanket and relaxed with our toes in the grass. Romy danced, clapped and sang all night. She really is a lover of music.

We did end up leaving a little early because some people around us decided to spark up a joint while they were surrounded by kids at a family festival. Ay-yi-yi...... they weren't young college kids either, they were easily in their forties so you would think they would've known better. Some big guy came to the rescue and made them stub it out, but we left anyway. We picked up some sandwiches and some fruit and had a late impromptu picnic dinner on the beach. It was such a fun day.

Romy and Daddy

Anuhea

Jake Shimabukuro

If you haven't heard of him find him on YouTube, he's AMAZING.

Sweet Romy

Massive crowd

That's Ziggy Marley! He sounds very much like his father and when he sang "Redemption Song" it brought the house down.

Jack Johnson! Fantastic as usual!

Romy's Super-Mega-Awesome-Developmental Update

Romy had a full neuro-developmental evaluation yesterday. She hasn't had one of those since we left Texas 8 months ago. I used to dread going to them because while there were always some positive comments there were many more negative ones. This one was way different. Romy was examined by many different specialists and every single one of them said that Romy was doing fantastic and were very optimistic about her abilities.

She was seen by a child phycologist and social worker. They just wanted to know about any behavioral problems like if she was self harming, unattached and so forth. Luckliy, she isn't but we talked a bit about Romy's separation anxiety and they  deemed it pretty normal and not truly concerning until Romy hits 3 or so. They gave us some tips and let us know that as parents, we weren't really helping the problem much. I admit it, we give in to her cries 90 percent of the time. They want us to use key phrases when we leave and come back such as "I'll be right back, and "See, I'm back" so she can learn to associate those words with us leaving but not for good. We have to let her cry, we can't run right back and pick her up anymore. They also suggested putting Romy in a play group and trying day care for at least a few hours a week. Romy starts school (it makes me sad and I don't want to talk about it) in January of next year so we have to get her used to being apart from us so the transition will start now. They like that she's attached to certain people (mainly Mom, Dad and Tita Lisa) because it means she has the ability to form meaningful relationships. So overall, they were pleased.

After that evaluation we saw her neurologist and an orthopedist. Her neurologist is still leaning towards a baclofen pump when she gets a bit bigger and the orthopedist didn't see the need for serial casting or any surgery just yet. She had x rays of her hips and pelvis done and they looked just fine, so no intervention needed as of now. A huge percentage of CP kids end up with dislocated hips and if it ever happens it can be debilitating for life. So she will be monitored closely so we can prevent that from happening. No casting, no surgery, no hip dysplasia? Sa-weet!

The specialist I was dreading the most was the developmental doc. The previous developmental appointment we had didn't go so great at the time, he was concerned about her lack of speech and her need for visual stimulation, apparently signs of developmental disorders. This one was fan-friggin-tastic. First off, Romy is 32 inches tall and a whopping 21.5 pounds! My baby finally crossed the 20 pound threshold and then some! This means she has gained 5 pounds in 8 months. For Romy, that is a HUGE weight gain. Not only that, she is on the charts for her actual NOT adjusted age for height. Granted she's only in the 3rd percentile, but she's THERE. Also for height to weight percentages she's in the 44th percentile, which means for children that are 32 inches tall, she weighs more than 44% of them. Awesome. She's still considered very small, but HEALTHY. Her head growth was concerning when we left Texas, they said she was borderline microcephaly , well she's no longer in that category. He's pleased with her growth curve and she's on track (her own track) with head growth. Woo hoo! 

As for developmental skills, he was pretty pleased as well. For gross motor she was gauged at a 10 month level, for fine motor she was gauged at a 15 month level and for cognitive she was gauged at 19-24 months! Think about it, Romy's adusted age is 24 months so that means she is on target for some adjusted age cognitive skills! Her speech is still lagging, but shows huge signs of improvement. She has put together two word phrases recently, ("Did it" and "Me try") it's not quite consistent, but she's getting there. Although she's still considered globally delayed, she is really close to dropping the cognitive delay diagnosis. She will  never be able catch up to her peers as far as gross motor is concerned but she has CP,  so it's to be expected. She will most likely continue to improve her fine motor skills and eventually have a near normal gauge.

I really could not have asked for a better day. Romy, you are amazing.

Happy Adjusted Birthday!

Romy, it's your 2nd adjusted birthday!

Today was Romy's expected due date. So it makes her officially 2 years old adjusted! To be honest, I just remembered what today was just a few minutes ago so we'll have to make up for it tomorrow with some yummy cupcakes.  I will post some messy cupcake pictures soon.

This date reminds me just how far she's come and just how fast time flies. My sweet baby is in full toddler mode.

For now, I will leave you with some pictures from the past week.

My nephew, Chris, and Romy both love bath time. We literally have to drag them both out.

We spend every Saturday and Sunday morning cuddled in bed as a family. It's my absolute favorite time of the week.

Romy and all of her Easter swag.

Cousins on Easter

Happy Homecoming Day!

Today marks the second anniversary of Romy coming home from the hospital! She spent 3 loooong months there and I remember how surreal it felt to FINALLY be taking my baby home. To FINALLY lay her in the crib that had taken Ray forever to assemble.

I can vividly remember riding in the backseat with her while Ray drove slower than my grandma and avoided potholes like the plague the whole 2 and a half hour ride home from the hospital. We were so freaked out to have to completely care for this fragile little 4 pound infant. We had been parents for 3 months but that day we truly became parents.

Two years later and we're still freaked out, but enjoying the ride.

Happy homecoming baby girl! You are so loved.