Tuesday, November 16, 2010

Rolling with the Punches

Chloe continues to keep me busy with the "little things" going on in her life! First things first - her g-tube site closed up nicely after a brief, minor infection after the closure surgery. A little oral antibiotics (and lots of positive thoughts and prayers) and she was good to go! At her post-op appointment the other day the doc was talking to me about what it would look like once the scab fell off and Chloe must have heard her because she popped that little sucker right off! (Sorry, I know, GROSS!) But that gave the doc a chance to look at it and explain to me what we were looking at (a little pink skin with one tiny little opening remaining - which I believe has even closed already after only a day). Chloe is also continuing to eat like a CHAMP. I can't hardly believe how much she's improved. Oh, and we ran into one of her old cardiac docs (he was a Fellow) from when she was mega sick girl and he was SOOOOO impressed. He couldn't get over how great she looks even with a terrible cold (yes, she has a terrible cold!). He said it was such a moral boost for him to see her looking so good. :) You go on about yourself big girl!!!!

Okay, onto the latest drama. First, her foot and now feet are turning in fairly significantly. We stopped using her braces because she was looking so good, but now her feet are turning in so much that her therapist is concerned it's going to affect her bone growth. So back to braces. Booo. I have to be honest, I hate them. I mean, I don't really HATE them, but the pressure to remember to put them on and take them off for varying times each day is a lot to keep up with. I know, that sounds totally LAME. But somethings it's just hard to be consistent and that's what she needs! And while I'm complaining, she needs new ones, so that's MORE MONEY we have to spend (we had a huge deductible for her surgery so we're also dealing with that - argh). Okay, that's it for complaining because putting it all in perspective things could be much worse and the honest truth is she truly "has her health". So what are some stupid braces. They're a great excuse to wear those adorable leg warmers Baby Legs! LOL

Finally, we had Chloe's eye appointment today. Her eye turn has indeed gotten worse and she will most likely require surgery within 4 months from when it started. Soooo, we'll see the doc again in 4 weeks, but in the meantime he wants us to try #1) patching her eyes alternating days for 1 hour a day and #2) getting her to wear prism glasses. (more money, more money, more money - hee hee, just kidding). So she's getting these adorable little glasses, just like Sweet Pea has and will likely rip them off her face every chance she can, but we're going to give it our best effort. It's one month and hopefully by then we'll see some improvement. If not we can expect surgery in early January.

So I think that about does it. She's got this nasty cold which I can't believe she's fought like she has. No fever. No rashes. No drama. Just a REALLY nasty nose and a little bit of a cough. Hey we can handle that and everything else. I was thinking to myself how different things are with Ms. Chloe. Everything we've already been through with her. When these "little things" come up it's like no big deal, but I know if ANY of these things had happened with my older two kids it would have been high drama! I would have been so scared and freaked out. We've certainly learned to roll with the punches!


  1. I hope that the glasses go smoother than you expect! Sweet Pea loves to show that she can now take them completely off her head, not just pull them down around her neck. I hope you found a place within your insurance network to get the glasses because that has been our issue.

    I know Chloe is going to rock them so well though!

    I hope she feels better soon!!!!

  2. Not lame..that would totally stress me out..I have such a horrible memory I'd have to set alarms to tell me when to do what...good luck!
    And good luck with the patch and glasses...
    So much...and it's so funny how it's not really a big deal...haha..after heart surgery it's like, fine-leg braces-bring it-eye surgery-whatev!

  3. So glad the g-tube problems are in the past! Whats with this girl and everything turning in! He he! Hopefully she'll leave those glasses on.

  4. Amy...it was so good to talk to you today. Thanks so much for calling...sorry it was so hectic on my end. Of course for the last hour I have able to quietly sit here and enjoy everyone's blogs while Ella is watching her movies. But of course not when you called :( I think Chloe looks adorable in those glasses. Funny because before you even mentioned that the glasses were like Sweet Pea's, I immediately thought that she looked like her when I saw the picture. Chloe is doing awesome and you have alot to be proud of with her. It looks like the G-tube is a go for tomorrow morning so look for the update!! Thanks again for calling me to calm my G-tube fears!!