The Latest Update

For all of you who look for a weekly update, my apologies - my computer was attacked by a virus last Friday and it took us all weekend to get it working again. Fortunately I didn't lose any of my files!

The computer wasn't the only one with a virus last week - all 3 of us caught a cold. Apparently that's what was bothering Kinsey when I last posted, not her new heart medicine. She's had the sniffles and a cough for about a week now, but the doctor and nurses have checked her out and say her chest and lungs sound fine. She is acting like she's feeling fine and eating well. In fact, she's now up to 12 lbs 7 oz!!! and 25 inches long!!! She just keeps growing and growing :)

She's back on the heart medicine now and seems to be doing just fine with it. I'm not sure if it's the medicine or not, but she has been in a really good mood lately. She's very ticklish and will laugh a lot if you catch her in the right mood. Unfortunately, I haven't been able to catch it on tape, but it makes me laugh so much when I hear her laughing.

We are planning to start introducing foods again soon and with the doctor's advice we will increase the laxative to twice a day when we start foods again to avoid any digestive problems that we had before. She does seem to be going more regularly now - I think that might be a positve side effect of the heart medicine.

Kinsey has a new toy - we bought her one of those bouncy seat activity center things. We have to prop her up in it a little since she doesn't sit up on her own yet, but her therapists suggested it might be good for her. She prefers to be upright (like on your shoulder when you're carrying her) so she doesn't really care for her swing or the vibrating chairs that have her in a reclined position. She seems to like the activity center, but as with everything, only until she gets frustrated with it. Here's a video of her playing in it: http://www.youtube.com/watch?v=378HtJcx2xE

Today Kinsey was fitted for the splints for her hands and feet, but we won't get them for a couple of weeks. We got to pick out colors and patterns for them so they will match her outfits! Of course, we chose pink since that's what she wears most of the time.

We are taking Kinsey on vacation this weekend! We are going to Warm Springs GA where we rented a log cabin in the mountains for 4 days. We're going to try taking her in the pool there - she likes taking a bath so much so we think maybe she'll like the pool. I'll let you know how that goes!

Here are some recent pictures:

She looks confused by that sun!

I LOVE this picture :)

And Bailey thinks he's a girl wearing Kinsey's bow!

Time Flies - Kinsey is 6 Months Already!

It's hard to believe it's been six months since she was born, but Kinsey celebrated her half birthday on Tuesday. :) Ok, so we didn't really celebrate, but we should have!

This week has been a little bumpy. We went back to the cardiologist on Monday to get the results of the Holter Monitor. The dr. said her heart isn't skipping any beats, but it did beat consistently fast the entire 24 hours - even when she was asleep. It's not rediculously fast (around 200 bpm and a healthy infant is around 150). He wasn't terribly concerned with that alone, but that combined with the Cardiomyopathy (thickening of the ventricular wall) puts her at risk for a serious problem so he put her on a medication as a precaution.
For those of you who want all the details, the medication is called Propanelol and it's a beta blocker to slow down her heart rate.

So we started giving her the medicine on Wednesday morning and she seemed to do just fine with it. Aside from having a hard time swallowing it sometimes (it's a liquid and can go up into her cleft and into her nose) she didn't have any reaction. In fact, we felt a little like it was evening out her termperment a little, but maybe not. Anyway, Thursday afternoon she started crying a lot and refusing to eat more than an ounce or two at a time (normally she eats 5 oz). We thought maybe it was a side effect of the medicine, so we stopped giving it to her and called the dr. He said probably not, but was ok with us taking her off of it for a few days till she gets back to her old self again.

Right now we're not sure if she has a little cold or if she's teething (which I've been told can cause cold-like symptoms). The nanny pointed out to me that you can see and feel the definite outlines of her 4 front teeth on the top of her mouth. We've known for a while that she's been teething - the girl will chomp on your finger and drools like crazy! - but we hadn't seen anything that looked or felt like teeth yet. So we're just letting her take it easy and making sure she's eating and resting enough. We have a regularly scheduled appointment with her pediatrician next week anyway and we'll see how she's doing then. As usual, we will keep everyone posted.

My first official Mother's Day was last Sunday. We went to the park by our house for a little picnic. Here are some pictures from the day:

These glasses fit her now and she likes them!

When she turned her head from side to side, the glasses moved up and down on their own.

A New Milestone

This week Kinsey did something new - she rolled over for the first time! Unfortunately, she did it in her sleep so we didn't get to see it happen, but at least she did it and I can't wait for her to do it again!

Kinsey is really getting the hang of eating - she opens her mouth for the spoon and gets excited. I made apples for her, but I think they weren't sweet enough (not as sweet as the prepared stuff). We tried pears and she really likes those, so I'm going to try making pears next - with apple juice instead of water to keep them sweet. We'll see how that turns out. We also have some sweet potatoes and carrots to try next. She does have some trouble with the food going into her nose though because of her cleft palate. We may have to look into getting that fixed sooner than later since it will help her with eating.

We discovered that she likes frozen yogurt - a lot! She makes a face at first because it's cold, but then she smiles. Here's a cute video of her eating frozen yogurt (sorry the video is sideways - I keep forgetting I can't rotate the camera when I'm taking video). http://www.youtube.com/watch?v=dNCmuddg6WA

Eating Frozen Yogurt

Kinsey is up to 11 lbs 8 oz and 24.5 inches long. She's wearing her 6 months clothes now (and she's still a couple of days away from being 6 months!). She's still too skinny for the bottoms (I have to pin them) but she needs the 6 month size for the length.

Grandma was here visiting last weekend and they had lots of fun together. Of course we took a ton of pictures. Just a few of them are posted at the bottom of this blog.

We did get some good and bad news this week about Kinsey's health. She had her 6 month follow-up appointment with the cardiologist and while all 3 of the original problems she had a birth have cleared up on their own (yeah for that!) she now has a new problem. The doctor detected a electrical arrhythmia (called Asymmetrical Septal Hypertrophy otherwise known as Wolff-Parkinson-White Syndrome). He also noticed a thickening of the ventrical walls of her heart (Hypertrophic Cardiomyopathy - HCM). The arrhythmia ia a finding in HCM so they are related. To look into it further, Kinsey had to wear a Holter Monitor for 24 hours. We are waiting for those results now.

So what does this mean? Well, as usual, we're not sure. He gave me a bunch of info on HCM that basically says there's tremendous various in how HCM presents itself and how it progresses. Aside from the arrythmia, it's hard to say if Kinsey really has any of the symptoms (which include difficulty breathing, poor growth, excessive sweating, crying or aggitation during feeding thought to be due to chest pain). Kinsey has some of these symptoms, but poor growth for instance is also part of Trisomy, so who knows.

HCM and the arrhythmia is treatable with medicine and many children with HCM can lead relatively normal lives once treatment has been started. The information does say that infants with HCM do far more poorly than older children. As with everything else, we have to just wait and see how she does. We have a follow-up appointment with the cardiologist next week, so I will keep everyone posted.

If you want to read more about HCM and WPW Syndrome - here are a few links:
http://www.americanheart.org/presenter.jhtml?identifier=4785
http://www.medicinenet.com/wolff-parkinson-white_syndrome/article.htm
http://www.webmd.com/heart-disease/guide/hypertrophic-cardiomyopathy
http://www.heart.org/idc/groups/heart-public/@wcm/@hcm/documents/downloadable/ucm_312225.pdf

Anyway, back to the happy stuff - here are some pictures from Grandma's visit:

We went to Portrait Innovations and had some professional pictures taken

Then we went to the park and took some ourselves

She really loves bathtime!