RowanEmilia.com

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!

I realized that I haven’t given an update on Rowan’s development in a while. Basically, she’s a typical toddler. She has tantrums, is STUBBORN, and manipulative. She’s not walking or pulling up yet, but the physical therapist is working on that. Rowan can walk behind a little push toy better but hasn’t figured out the whole “center of gravity” thing. Rowan doesn’t talk much. She reliably says about two words “dada” and “night night” but she signs a ton. Her speech therapist explained that there is something about Rowan’s palate that makes it hard for her to make certain sounds. Eh. Whatever. She has language, that’s the important thing.

As far as anyone can tell, Rowan is typical cognitively but is being held back by her body. Her therapists and her doctors are happy with Rowan’s progress so I am too.

Oh, and tube removal is scheduled. June 21.

I’ll post photos tomorrow! No need for threatening emails!!

Great Cardiology Update: Rowan’s heart is doing wonderfully! Better than the Dr had expected. The narrowing at her repair site on her arch appears to be LESS than it was six months ago. Her heart, which has been enlarged, is now going back to normal size. The Dr said he is “cautiously optimistic that she will never need to see the inside of the OR again.” This is HUGE for Rowan. Her heart is getting healthier.

Second Update: The Dr decided that Rowan’s feeding tube can come out! He emailed the surgeon who placed it and he said, “sure, have them schedule an appointment”. WOOHOO! Nobody else had been wanting to make the decision, they were all waiting on his (the cardiologist’s) OK, so there it is. Rowan will be tube free ASAP.