RowanEmilia.com

Big Sister, Little Brother

First, Rowan! She has been blooming developmentally. She was released from Physical Therapy! This is a huge milestone! Rowan has been doing PT since she was 5 months old and now her therapist believes Rowan will continue to get stronger and more coordinated on her own. Her language has taken off too! We are *this close* to dropping down to one speech therapy appointment a week. Her progress has been amazing to see. She’s become more independent and confident. I really can’t wait to see how much she progresses in the next year.

Oh and health stuff? Awesome. Healthy as can be.

Princess Rowan after her last cardiology appointment!

Julian! He’s 6 months old and is INSANE. He weighs 19lbs and is 28 1/4 inches tall. He started crawling a couple weeks ago. He started doing this bear walk thing that is so much more difficult than actual crawling. Now he’s kind of half crawling, half bear walking and he gets around! He’s been going after the cats and grabbing poor Sophie.  Recently, he managed to pull himself up. Seriously, insane. Julian is a busy, intense baby. He’s a huge flirt with the ladies and adores his big sister!

Thinking about it..

Yikes!

It’s crazy, isn’t it? I can’t believe how grown up she is getting! Rowan is a girly girl through and through. She has strong opinions about what she wears (lots of pink or purple nowadays) and how she has her hair. I think she has about 4 purses. She actually said to me , “these shoes match my outfit”. I have no idea where she got that!

Rowan is doing great. Talking constantly. Constantly. She has an incredible memory and will talk about things that happened over a year ago. Her language is just exploding! It’s both awesome and crazy-making all at the same time!

I should also mention that healthwise, Rowan is still surprising her doctors. In May, she was taken off her last medication! So she is officially med free!

A lot has been going on in Rowan-land lately. Rowan continues to progress and do more and more every day. A summary…

1)Potty training. She’s 95% potty trained! I can’t explain it, but she is reliably staying dry and letting me know when she has to go. She isn’t perfect but is pretty close. We’re working on the independence part, pulling her clothes up and down, etc, BECAUSE..

2)She’s going to school! A real school, not a daycare type. Crazy, huh? This has been my obsession for a few months. It’s ridiculous how difficult finding a preschool has been. Blech. Rowan qualified for HISD’s preschool for children with disabilities but for various reasons we decided that was not the right place for her. So she will be going to a Montessori preschool or primary program. The school is well respected in Houston and is one of the few that goes through high school. They know she has some special needs but don’t seem concerned about it at all.

3)Everything else. Rowan is talking and learning like crazy. She still has a lot of difficulty saying some sounds but she definitely tries. She has a few multi purpose sounds she makes when she doesn’t want to or can’t use her words but she’s trying more and more. I recently sat in on her speech therapy session and learned she’s been holding out on us. Rowan has WAY more words than she normally uses. And apparently she loves flashcards. Weird.

Her current obsession is learning her letters. She’ll point to letters anywhere (like on my t-shirt) and try to name them. I would say she recognizes at least half of the uppercase letters. Rowan knows her basic colors, body parts and is really proud of herself that she can say “elbow” while pointing to her elbow.

So, that’s a little about what’s been going on around here. I thought I’d end the update with a picture of our recent shopping trip…

Getting ready for school!

Rowan was released from the endocrinologist today! We’ve been going to the endocrinologist every 3 or 4 months to keep track of Rowan’s Vitamin D and Calcium levels. DiGeorge kids often have parathyroid deficiency which can lead to hypocalcemia. Rowan is NOT one of those kids. Her calcium levels and her parathyroid hormone levels have always been fine but her Vitamin D has been low. But with a low level supplement everything is fine, so the doctor said he didn’t need to see her anymore. WOOHOO! One doctor down, one to go (immunology, cardiology will be around for a while yet) and I’m so excited! I’m happy that my girl is getting healthier and healthier!

Yup, Rowan is definitely talking! She only has about 10 words (and sadly, one of those words is Elmo) but she likes to use them. All the time. I think I mentioned before that Rowan has difficulty coordinating all the muscles involved in making verbal sounds, and a bit of a palate issue that makes certain sounds harder to make. All this is true, but our girl is still trying. So her words that she says without prompting and relatively properly are…

Mama, Dada, Nana (grandma), ba-bye, all done (“ah duh”), bath, ball, ice (she says this now instead of asking for water), up (working on “duh” for down), and yes, Elmo. There are a few more she’s working on. She says “nana” for banana,”aba” for apple and her friend Abby, and something like “daddee” for doggie (Sophie). She also uses “baba” for bubbles. There are plenty of other words she uses but they aren’t super consistent. “Help” is probably the next one we’ll be adding to the list.

So she’s coming along! It’s so exciting to watch her use her words more and more.

I realized I haven’t posted an update on Rowan lately. So let’s see…Rowan took her first steps on her 23 month birthday. She didn’t really want to walk but when she turned 2, a switch was flipped and she decided to walk all the time. It was really amazing. She just decided she was over the crawling thing, and wanted to walk. Rowan also decided that a 2 year old can’t be fed my mom anymore and must feed herself. So, Rowan feeds herself all her meals. She’s not so good with the utensils yet, but she’s trying.

Nowadays, Rowan is running after the cats, playing with Sophie and getting into trouble. She throws tantrums because she doesn’t want to go to bed, and runs away from diaper changes. Basically a typical 2 year old. Her major thing now is in speech. Language/speech issues are super common in DiGeorge kids. A lot of kids have problems with receptive and expressive language. Rowan has NO problem with receptive language. She understands everything. Expressive language, i.e. speech, is a different matter. Rowan only really says “mama” and “dada” but has really started trying to talk in the last few weeks. Every once in a while, she’ll say something like “hi mama”. I swear she’s said “cookie”, and “thank you”. We have witnesses who heard her say “two” while we were counting during Thanksgiving! The words are in there, they just need help getting out!

So that’s where we are. Rowan is a sweet, loving, crazy 2 year old. She is so much fun!

We had the world’s quickest cardiology appointment today. The gradient across the repair site at Rowan’s aortic arch is just a “smidgen” worse. Nothing to get excited about. We go back in 6 months. We’ve known since she left the hospital that Rowan would eventually need another catheter procedure. It still looks like it will be a few years before anything has to be done.

The big news is that Rowan did NOT have to be sedated this time! She made it through the echo like a champ. I promised her all the cookies (Cheerios) she wanted when we were done.

I forgot to mention this! If anyone remembers, last year Rowan was having a TERRIBLE time with retching and  vomiting. She was doing it constantly. For months.  We finally saw a GI doctor who put her on a medication that stopped it. She’s been on the same dosage of the same medication for a year. Well, we saw the GI doctor again and he said Rowan doesn’t need the med anymore and he RELEASED us.  One less doctor to deal with and one less med to give Rowan. Woohoo!

Rowan had surgery today to close her g-tube site and to repair a hernia. It all went very smoothly and we were home by 11:00 am. Rowan has been VERY clingy and grumpy but is doing just fine. Hopefully this will be the last trip to the OR ever.

Rowan is officially a FORMER g-tuber. The surgeon pulled the tube out this afternoon. Now if the site doesn’t close on its own we may have to go back to the OR to have it closed. Rowan also has a small hernia where one of her drain tubes (after her heart surgery) was placed so she will be back in the OR anyway.

But it’s gone! For good!