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
1987?).



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.

Where We're At

*****UPDATE*****
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.

Happy Day

Yesterday was a good day. No worries about eye drops, eye pressure, or the contact lens that my four month old will start wearing next week. No stressing out about eye patches or glasses, no freaking out about swelling and redness in Amelia's eye, no tears (from me or Amelia) when she got her four eye medications.

Instead, it was a day filled with sunshine, spent playing outside from lunchtime until bedtime. Bikes, scooters, Barbie Jeeps. Bubbles, chalk, cartwheels. Honeysuckle and wild flowers, picked by my biggest girl and placed carefully in the vase she made me for Mother's Day. And lots and lots of giggles.

It was one of those days when everything feels right with the world. Where you find yourself taking mental pictures instead of digital ones. Where you breathe in the life of your children and feel, in that moment, more blessed than you've ever felt before.

Life is good. Not always easy, but so, so good.

Surgery.

Amelia's surgery is tomorrow morning. Please pray for our sweet girl. We'll keep you posted.

A Reprimand

Last night we had dinner with my parents and siblings. We spent half the time trying to get my brother to tell us who would be headlining the walmart shareholders' meeting--to no avail. We spent the other half talking about what we've been reading lately.
When my sister asked me which book in the Twilight series I was on (I know. I KNOW.), I told her the third one. My mom, in all seriousness, looked at me and said, "If you have time to read, you have time to blog."

Disney World

It really is the happiest place on Earth.






And Magic Kingdom is...well, it's pretty magical.






And those princesses are everywhere. And by "everywhere" I mean "at the end of a very long line in which you will wait at least thirty minutes in the blazing sun in order to get them to sign your child's autograph book and take a blurry snapshot".







The girls loved the rides...






Well, except for It's a Small World. Arden had mixed feelings about that one.



Amelia even got in on the fun.






That last picture is just because there's nothing cuter than chunky baby legs.

We had a wonderful trip and the girls were so good. Of course, Grandma Becky was a huge help with that! We can't wait to go back--Claire is already plotting our return.

Untitled

Time stood still on Friday.

That was the day that we were told Amelia has PHPV, a congenital eye disease that has left her with little, if any, vision in her right eye.

Time stood still.

Surgery will be performed in the few next weeks. Surgery on the beautiful brown eye of my precious baby. Surgery that may or may not improve her chances of ever having useful vision in that eye. Yet, surgery that we have to try because if we don't, we'll never know.

Time stood still.

After surgery, Amelia will begin an aggressive regimen of eye patching and glasses. She will most likely have to wear a patch on her "good" eye for 6-8 hours each day in the hopes that her "bad" eye will regain some vision. She will also wear glasses from now on. This therapy may or may not improve her chances of ever having useful vision in her right eye.

Time stood still.

Children with PHPV are predisposed to glaucoma and cataracts, things we will have to watch for over the years. She will also be at risk for retina detachment.

Time stood still.

We don't know what to expect. We don't know whether Amelia will ever see more than light and shadows in her right eye. We don't know if she'll have glaucoma, develop a cataract, or experience any other complication. We don't know so many things.

But we do know this: we will do whatever it takes to ensure that Amelia has the best treatment and the best chance for usable vision. We know that Amelia is loved by and being prayed for by so many people. We know that she is exactly the way God intended her to be, that she is fearfully and wonderfully made, and that God has a plan for her that is much bigger than this eye disease.

As we await our consult at Arkansas Children's Hospital, please pray for the following specific things:
--That her lens will not have to removed during surgery
--That we will make the best choices for her treatment
--That we will have peace through this process


I praise you because I am fearfully and wonderfully made; your works are wonderful. I know that full well.
Psalm 130:14