Monday, June 29, 2009

The Patch

We started patching Amelia's good eye last week. I have been dreading this particular part of her treatment since the day she got diagnosed. I know it's for the best. I know it's her only shot to gain some vision in that eye. I know she'll be fine. I know that, eventually, this will be just a small blip on the radar for her. I know.

But for now, it's agonizing. When she wakes up all smiley and bright-eyed, it feels wrong to patch her one good eye, knowing that I'm essentially making her blind by doing it. It's frustrating for her, not being able to see. She lasts about an hour with the patch on, then goes to sleep. I understand this fight or flight response. Sometimes I wish I could just go to sleep too.

There have been some glimmers of hope though. When her good eye is patched, she reaches for toys held up in front of her. She smiles at me and laughs at her sisters. She seems to see something, although her doctor doesn't seem quite as impressed by this as Jason and I are.

Claire and Arden don't like it when Amelia's eye is patched. They want to be able to see all of her sweet face, as do I. I think it bothers them to see her having to do something that is difficult for her. Claire told me not to take Amelia's picture when she's wearing the patch. She said people would laugh at her. I told her they wouldn't. She asked what if they did. I said I would punch them in the face.

And I wonder where Arden gets her aggressive streak from.

I've had several kids ask about the patch. The first, a precious preschooler with pigtails that looked like pom poms, was fascinated with Amelia's pink and green camo patch. She wanted to know what was wrong with Amelia's ear. Claire, with the authority that only comes with being five years old, rolled her eyes and said, "it's not her EAR. It's her EYE. And there's nothing WRONG with it. It's learning how to SEE."

Not quite right, but I appreciated her enthusiasm. At least I won't have to worry about Amelia's sisters taking up for her.

Monday, June 22, 2009


My second baby is three, or in her words, "free". I know it's cliche to ask this, but seriously, how have three years gone by already? Someone please tell me why my babies keep growing up on me.

Arden has been anxiously awaiting this birfday (her words) for weeks. It's as if she knows that "three" graduates her from the toddler category and places her firmly in the preschooler category. She is eager to get older, desperately trying to catch up to Claire, not understanding that she'll always be on a two and a half year delay.

She choose her potty (party) location herself. Chuck E Cheese--a location I agreed to only because Claire also celebrated her third birthday there. She was clear about wanting Tinker Bay-yell (Tinker Bell) on her cake and a new bike as her present. She decided on these details weeks ago and never once waivered from them.

That's one thing about my Arden--once she's made up her mind, she's made up her mind. This isn't always a good thing, as it makes for one very stubborn kid, but it does mean that she's not going to waste 30 minutes in the toy aisle at Target trying to decide what to buy with the $5 she got last week and then change her mind in the checkout line (claire).

She enjoyed every minute of her party--playing with her friends, meeting Chuck E Cheese, blowing out her candles three times, opening her presents (especially opening her presents) and having a day that was all about her.

Free years old. Can you believe it? I guess this means it's time to give up the paci. Also the biting. And, probably the hitting and pinching. Hmmm...Looks like we have a big year ahead of us.

Wednesday, June 3, 2009

Big Girl Stuff

So. It seems I have a couple of other kids who, over the past few weeks, have been sidelined (at least in terms of this blog) due to that four letter word called PHPV. They have remained blissfully unaware of what's going on with Amelia, other than to mention her in their nightly prayers, and I'm grateful for that. But, because time marches on, my big girls continued their normal activities and had a lot of fun in May.

The Dance Recital That Almost Never Was...Arden decided at the rehearsal that she "hated that stage," "hated that tutu," "hated that song," "hated those shoes"... You get the point. It took major coercion to get her there, and then there was a brief heart stopping moment when her class took the stage and we heard a familiar "HEEEYYYYYYYY...." coming from the dark stage. But once the lights came up, Arden seized the moment and took command of the stage.

Claire, of course, was excited to be on stage and looked beautiful in her big pink tutu. Because she doesn't like to do anything incorrectly, she had her head turned to the side almost the whole time, watching her teacher performing the moves in the wings.

Summer gymnastics started and my little Mary Lous were so excited they could hardly stand it (could someone please tell Claire that the hang loose sign is

Mother's Day Tea at Claire's preschool. Claire's class put on a performance for all the moms and then presented us with gifts and tea and cookies that they had made. It was soooo cute!

Arden's End of the Year Program. She had the same feelings about this stage as the one at the recital, but again, once on stage, she totally hammed it up. And she kept her hat on the whole time--a big surprise.

Last Day of School. And Claire's last day of preschool. Ever. I don't have to tell you how sad that made me, although I know she's so ready of kindergarten.

May was a complete blur, for so many reasons. This year, we're particularly thankful for lazy summer days.

Monday, June 1, 2009

Where We're At

Yesterday, we took Amelia to Little Rock for a follow-up appointment. The news was good! Amelia's retina has improved beyond what her surgeon had expected could be possible based on what he saw during her surgery. Don't misunderstand--her condition is still far from good, but this small victory feels huge to us. Dr. B was hesitant to tell us what this means in terms of her prognosis, but said "Let's just see what the Good Lord does with her."

Sounds like a good plan to us.

Over the last several weeks, I've started at least five posts on Amelia's eye condition. They all remain unfinished, and all signs point to them staying that way. For some reason, I've found it much harder to write about this experience than to actually live it.

The short story is that, while Amelia handled the surgery very well (probably better than her parents), her eye was in much worse shape than her doctors had originally thought. Some day, I'll recount the horror I felt when her surgeon emerged from the OR not 15 minutes after taking her back and asked me where Jason was (um.... Starbucks?) because he needed to talk to us. I think I'm still suffering from post traumatic stress disorder from that one, so I'll save it for another post.

For now, Amelia's prognosis remains uncertain. Her lens had to be removed and her retina was partially detached. These two unexpected events open up a new set of possible complications for her and make it difficult to know what her long term vision will be. We will hopefully find out more when we go back to Little Rock later this week.

The good news is that our sweet girl is as sweet as ever. And, other than a red, irritated eye, she's pretty much back to normal. Now we wait, which is proving to be the hardest part of all.