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.

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!

Plum Tuckered Out

This is Chloe after her appointment with surgery today. So we have a plan. . . sort of. It involves some waiting and some what ifs and some more waiting, but still, there's a plan.

Since the g-tube site is not really leaking too much we have the choice of waiting awhile longer to see if it will close on its own, or going ahead. I'd just assume get this taken care of so we can get on with life as usual. But she's just had a cold, so we have to wait at least 2 weeks since her cold to make sure she's good to go. She had labs done today (hence the adorable doll in Chloe's sleeping arms given to her by the phlebotomist) so we also have to wait for those to come back since she's been having fatigue. The surgeon also wants to talk to Chloe's cardiologist to make sure she doesn't have any objections (which we doubt). Then the last piece to this ever so complicated puzzle, is ENT. As I said yesterday the doc wants to get in while she's under and clean things out and investigate further whether or not she'll need tubes. He's also getting back to me on whether or not we need a sedated hearing test, which would complicate matters (scheduling anyway) even further. But I have no worries. I expect it to all fall into place.

The procedure takes about 30 minutes, followed by about 10 minutes for the ENT and then another 45 minutes for the sedated hearing test, if that's necessary. So about and hour and a half total if they do everything. I'm not even going to worry about her eyes right now. We'll deal with that in November. I'm not sure it's the type of thing they'd do surgery on soon or it's really something more down the line. And I think they do it right in the docs office. Should be no big deal.

That about does it for the update. Hopefully I won't have much more to report over the next week or so except that her blood work came back great and that we all got coordinated and have a surgery date! Otherwise I expect things to be quiet!

Labor Day Weekend and Eye Doc

Well, before I give the weekend review in pictures I just thought I'd update Chloe's eye appointment. There was good news and bad news. Okay, not even "bad news", but something we have to watch. The good news is she doesn't need glasses! YAY! Her eye sight is great. Right on. The problem is one of her eyes turns in. It doesn't do it on it's own, just when the doc tests her. We have to watch it and return in 4 months. Because it's present at 2 years of age and because she does NOT have nearsightedness, it is not something that would be treated with glasses, but rather surgery. It's supposedly an easy procedure that the kids quite well with (notice he said "the kids" - LOL - said nothing about the parents!) So my guess is she'll need surgery for it eventually, it's just when. But she's amazed us before so I'll worry about it when the time comes.


Chloe managed to get herself wedged in between the couch and table while the rest of us were watching Camp Rock 2. Earlier that evening Sadie called out to me "MOM! Chloe's sitting in the dryer!" Sadie had opened the laundry room door and Chloe had crawled in the front loader, turned herself around and was sitting in there druming away with chopsticks. It would have made quite a picture if I hadn't been so horrified that she was sitting in the dryer!!!!!!!!!!!!


Sadie sharing some Italian Ice with Chloe at the Taste of the Shoreline in Guilford.


Sadie and Xander all alone in the bounce house.

Chloe watches the action with Nana.

Bouncing together.

Chloe at the beach.

Mommy and Chloe enjoying a beautiful afternoon at the beach.

It was a wonderful weekend.