Monday, January 30, 2006


My First Painting

I wanted to take a moment to post a new picture of Sophia.

A few days ago Sophia completed her first painting. I couldn't be more proud.

There are a couple additional photos on the Flickr! page. There is a link in the margin of this page.

She had a great time.

I will update on her condition soon.
For now I will just say she is doing well and growing and changing everyday.

These are very exciting times.


Saturday, January 14, 2006


Beautiful Song

I heard this song yesterday on a podcast I listen to called NotesUnderground, a music show out of Los Angeles. I really liked the song and it made me really think about the love I have for my wife and daughter. So, I thought it was appropriate to post it here.

The song "Speakeasy" is from an album called 11:11 by Maria Taylor on Saddle Creek records. Check out the MP3 here. I hope you enjoy it.


Sorry Everybody...

So let me start by saying how much I suck for not posting in so long. I cannot expect anybody to read this if I don't keep it up to date. I am truly sorry and hope you keep checking in for updates. I will try to do a better job of posting.
So lets try to catch up from the last post.
Sophia's leg is completely healed.
Overall, she seems to improve a little more everyday we get past her heart surgery. She has had a pretty substantial cold/flu since the last post. This caused her to have a nasty cough and resulted in bronchitis. We went through a round of amoxicillin. That did not touch it. So she received a round of Zithromax which seemed to clear it right up. Her cough was pretty substantial and often resulted in her vomiting. As a result of this we had to cut back on her tube-feeds and instead supplement with Pedialite through her tube. This seems to have been the key to keeping her cough in check. Her pediatrician mentioned to us that there are no conclusive studies that tussin-type cough medicines are any more effective than water. So instead of medicating her we just kept her well hydrated and this kept her coughing to a minimum. Once the cough was under control we started gradually returning to the tube-feeds. In just a couple of days she was eating normally.
I will try to update you on her eating situation. This has been the greatest change since my last post. First, as I mentioned a couple of posts ago, we were switching to Kindercal. This transition turned out to be no problem and as the calories are higher than her infant formula was, we were able to decrease the volume of her feeds. This seems to have improved her reflux substantially.
Orally, Sophia is exceeding any expectations any of us could have had for her. She loves to eat. She can eat any manner of baby food, and often puts away two jars at a sitting. We have been feeding her some table foods. She also loves oatmeal. We have started giving her small fingerfoods like oat cereal Os, tiny cheesy crackers, and these things called teddy puffs. This may not seem like a big deal, as most children eat these things. But back in early summer, we were not sure she would eat orally at all. I am so proud of my little girl. We still haven't tackled liquids but that will be the next challenge. In the meantime she gets all the liquids she needs through her g-tube.
Lastly as this post has become quite long. Sophia had a cardiologist appointment on Wednesday of this week. She was not real cooperative with the exam. As a result the doctor didn't get a perfect picture of Sophia's cardiac health. But the gist was, her oxygen saturations are still pretty low (although this could be because of the bronchitis), and her heart is a little on the large side (although this could have been an aberration on the echo, or residual swelling from her recent surgery). We will go back in a month and see. He mentioned the possibility of another heart catheterization to check the size of her pulmonary arteries (and possibly open them up a little in the cath. lab) and also starting a medication called Digoxin. I will keep you posted. For now, we will have to wait.
As a final note, I would like to say Patty and I are really happy with the progress Sophia has made. It is our opinion that Sophia looks and feels much better than she did prior to surgery. Hopefully, her next appointment will confirm this.
Until next time-Michael

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