Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Charlotte is 6 Months Old Today

Charlotte is 6 months old today. How time flies, even when it seems to drag on and on.

Her circumstances have made the last 6 months more trying than I ever imagined motherhood would be. I feel that I’ve let her down in so many ways; that I’ve not been the partner Philippe deserves; and that I’ve offended many of you when I’ve asked you to step back for a day or two.

On the other hand, Charlotte has developed into the easiest (personality-wise), happiest kid I know. She giggles constantly, loves to dance (especially to Sinatra and meringue, go figure), and makes goofy, cartoon-like faces. She can even raise one eyebrow—I suppose she needs that skill to react properly to her wacky parents.

I hope we get past this medical crap soon so that we can enjoy being a family.

Check this entry over the next few days—as I get time, I hope to post some then/now photos of our little silly girl.


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Cardiology Update

Charlotte had her monthly visit with Dr. Young yesterday. It was also the one month follow up to September’s angioplasty. After a very long wait, Charlotte had a 40 minute echocardiogram and then a consult with Dr. Young.

Bottom line: everything looked good. The TR velocity–the pressure measurement which led to the angioplasty–was lower than when measured by in August. No adjustments to medications at this time.

Next check up is in 3 months.

That’s all the news for now.


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Charlotte Helped Me Write This




It’s astounding—feeding Charlotte the appropriate amount of calories for her weight (as recalculated on Friday) has made an enormous difference already. Charlotte weighed in today at a whopping 12 lbs. 4 oz. That’s 7 oz. up from Friday. Shocking. She’s now averaging .75 ounces a day over 2 weeks. Just one growth spurt changes the trendline enormously. If we’re lucky, Philippe will generate 2 graphs to show us how new data changes the picture.

We’re still using the tube (although it came out this morning and since she’s eating like a champ, we’re going to wait a few more hours to re-insert it). The GI doctor suggested (by phone) that we add something called Duocal to her formula to fortify it even more. This will help us get more calories in with less volume and hopefully less effort from Charlotte. We’re hoping that we’ll be able to do another trial removal sooner rather than later. Charlotte has her 6 month shots on Tuesday, so more news on the tube front then.

Big food news: Charlotte has been having some rice cereal several times a day for a while now. She opens her mouth for it like a little bird. Today we started with bananas. Despite the face she’s making in this picture, she actually liked bananas a lot.

As I write, she’s practicing rolling onto her tummy. The road to “regular kid” has some bumps in it, for sure, but we are so blessed to have such a happy, easy child.