RowanEmilia.com

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.

Crawling isn’t even the most exciting thing going on in Rowan-land. Rowan is officially eating! It’s crazy.  It’s like a switch turned on and she just decided that eating is a worthwhile thing to do. She started taking down jars of baby food and is now eating mashed table food. All within three weeks! Rowan will even feed herself Cheerios and graham crackers. I hand or spoon feed her most of the time, though, because she throws EVERYTHING.

Rowan’s feeding therapist is very impressed with her progress. Last week, Rowan yelled at her because the therapist was too slow with the butternut squash! I can’t quite believe that Rowan is really eating. I keep thinking that Rowan will refuse to eat like she’s done in the past. But her therapist doesn’t think so. She feels we’re past that..because Rowan really likes her food.

Rowan, aka Peanut, is now officially a toddler. She’s not actually toddling yet, but who cares? Rowan is doing great. She’s willful, feisty, stubborn. She loves to “dance” to the opening credit songs of the Twilight Zone and NCIS. She will laugh and wave whenever Hugh Laurie is on TV. Rowan is also a huge flirt. Not shy at all. She will smile and wave at anyone. Recently we were  waiting for a chest Xray. There was this poor man in the waiting room who was obviously in pain probably due to broken ribs. Rowan got him to smile and babytalk to her. Ridiculous! She is a charmer for sure.

Of course, the downside to this stubbornness is that Rowan is not eating at all. She just shakes her head whenever I offer her food. We’re back in therapy for it. One of the things I keep remembering is something Rowan’s PICU nurse Trent said. The day after her heart surgery, Trent said that he had a feeling that Rowan isn’t going to be the type of person to do something just because we want her to. She will do it when SHE wants to. That’s been the truest thing anyone has ever said about her! Once she decided to be mobile, she was. I have a feeling the eating thing will be the same way.

Health stuff: Immunology? “She looks great, I’ll see you in a year.” Cardiology? “She looks great, I’ll see you in 6 months”. We are being cautious now that we’re in cold/flu/RSV season though. I’m not taking any chances!

As of last week, we have a tooth.  A bottom incisor has come in a full millimeter or so, and she’s fascinated with it.  Chews her fingers with it, chews our fingers with it (ouch – pretty sharp, and her jaws are powerful).  I keep trying to get some pictures of it, but trying to get enough light and Rowan to stop wiggling for long enough to get a clear pic is a challenge.  We’ll get there.  In the meantime, here’s her hanging with the dog (Sophie adores her):

As the cat looks on unamused. 

And sitting up all by herself:

Big girl indeed.  Tooth pictures promised in the near future.  In the meantime, check out the photo page for some new images.

Cheers!

Rowan is definitely keeping me on my toes. Medically, we’ve had a lot of really annoying and occasionally stressful days. First, the important things..At her weigh-in last week she weighed 16lbs 4 oz and was 25.5 inches long. Basically she’s short and chubby. Healthwise she is doing well. She had a couple of weeks where she was really tired and lethargic for days. That was really scary and stressful. There was some drama involved in attempting to get medical attention from Rowan’s pediatrician but I won’t dwell on that. Suffice to say, he’s fired. We don’t know what was going but she is back to normal now. She has started retching again but we know have a GI doc who prescribed her a new medication that should hopefully stop that. Her previous med, Reglan, will probably be taken off the market due to neurological side effects (thankfully Rowan didn’t have any of those). In two days we saw the Endocrinologist (really just the endocrinology Fellow), the Immunologist (who said she looked great), the Cardiologist and the GI doc. Her cardiologist assured me that her heart is fine and wouldn’t cause any issues like lethargy. Did I mention that I love him?

Anyway, the retching has caused  a step back in the eating department. Rowan will start retching the minute I put food in her mouth and she won’t drink anything. Today was a good day, though. She ate hummus off a pita chip at therapy today. A garlic, seasoned pita chip. She is clearly my daughter! I think once her tummy is back under control her eating will take off. Unfortunately, she doesn’t like baby food. Ryan and I are going to have to improve our eating habits if we are going to share our food with Rowan!

Rowan is also doing physical therapy twice a week now. She has low tone in her trunk and isn’t quite sitting on her own yet and won’t bear weight on her arms. Rowan is pretty stubborn so I think she will be ok. Once she decides she wants to do it, she will.

Today was a big day around here. First, Rowan finally rolled over. She was doing tummy time and was loving it as usual (sarcasm), when she just rolled onto her back! It was awesome, perfectly graceful. I tried to get her to do it again but she pitched a fit when I put her back on her tummy. Oh well. Maybe tomorrow.

The other big news is that Rowan is officially eating solids! She got to try some applesauce today at therapy and took a good few spoonfuls. She didn’t have any problem swallowing it and would open her mouth for more.  After therapy I got her to drink about an ounce of formula. It’s slow going but at least it’s going! So much better than the choking and gagging she would do before the therapy started.

So a good day all around.

Rowan had her evaluation with Early Childhood Intervention today. ECI is a state program for kids with developmental issues. They offer a wide range of services including physical, speech, cognitive, and occupational therapy. Since DiGeorge kids usually have developmental delays, getting Rowan in therapy is important. Anyway, the results are in : Rowan is progressing normally! She is on track with everything she’s supposed to be doing: communicating, tracking, and development of her motor skills. The only thing she is “behind” on is feeding, which is hardly a shock. So Rowan will be receiving her Speech and Occupational therapy for feeding. I’m so relieved that she’s developing normally!

The Endocrinology fellow called. Rowan’s Vitamin D is great. Her phosphorus is a little high so we’re going to watch that. Her Parathyroid hormone is a little low, but the important thing is that she’s making it. His only advice is to try to give Rowan as much breastmilk as possible since it’s low in phosporus. I told him I’d work on it.

Today we met with the Immunologist Dr. Pacheco. We got excellent news. All of Rowan’s Tcells are in the normal range! She was very happy about this. We go back for another check in 6 months.

We also had an appointment with the Feeding clinic. My impression is that their job is to make sure Rowan is growing appropriately. I, of course, am really anxious to get Rowan feeding orally. So, an appointment has been set up in January with the ENT doc who examined Rowan’s vocal cords in the hospital. Hopefully he clears her for another Barium Swallow and THEN she gets cleared to start mouth feeds. Keeping my fingers crossed!