Sunday, November 21, 2010

Eye Patch and Glasses

Chloe is doing pretty well with her eye patching. She has to wear them on alternating eyes for 1 hour each day. First day she ripped it off several times and I had to stay right on top of her. Second day I missed (oops). Third day was much better and the fourth day was great!!!! So she seems to be getting used to it. Hopefully by wearing the patches her eyes will strengthen possibly eliminating the need for surgery in January. Then there's the glasses. That's a completely different story. She will put them on, but won't leave them on. We work with her a little each day to get her to wear them. We're taking baby steps, although she only needs them for a month, so we don't have too much time to get her to wear them!!!! They have prisms on them to help her see better since her eyes don't align, but it could also potentially make her turn worse, which if she needs surgery is a GOOD thing because they want the turn to be the worst it can be so that they correct the whole thing and decrease the chance of repeat surgery.
Finally, I've put Chloe back in her leg braces. We'll wait to see if she needs new ones, but for now I'm going to continue to use the ones she has. Why not, right? Better then using nothing. She is walking ALL OVER the house now with her push toys. She uses that mode of transportation more then crawling now. Yay Chloe! Hopefully soon she'll drop the "walker" and do some independant walking.

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!

Saturday, November 13, 2010

Yes, We Actually DO Play in the Leaves in the NorthEast

My friend Holly recently asked me if we actually pile up the leaves in the fall and jump and play in them. We sure do!!! It was in the 60's today and GORGEOUS! The kids, parents and dog all had a blast! Hope you enjoy the pics! (Chloe's got a bad cold, but still thoroughly enjoyed herself!)

Friday, November 5, 2010

Like Old Friends

Ya know when you meet someone and it's like you've been friends forever? It's just natural and you just connect? Well, I met the coolest chick today! Her name is Holly and she resides over at Holly's House. If you haven't checked out her blog yet, I highly recommend you do! She leaves me in stitches every time! She's real life. Anyway, we met via our blogs and have become virtual friends and today we finally got to meet in person for the first time. She had her 2 beautiful girls with her and I had such a wonderful time getting to know all 3 of them. Unfortunately I didn't get any pictures of her older daughter (that were in focus anyway).

Monday, November 1, 2010

G-tube Site Update

Chloe visited her pediatrician today and he removed the stitch from her closed g-tube site. It was buried under scab so it wasn't very pleasant for her, but now it's done and if the stitch was causing some of the irritation, hopefully that'll resolve now. She's also started an antibiotic because her doc thinks she has a superficial infection. We expect the redness to clear up in a few days with the antibiotic, but we marked where the redness is so we can tell if it spreads. I'll obviously be watching her closely. Thanks to everyone for the thoughts and prayers. I think she's going to be just fine. :)