Death to Blogger

Blogspot,

We have had our issues in the past. But as of today you are dead to me.

I was using my phone to edit the post I just wrote when you deleted the whole dang thing. Poof! As if it never existed.  It wasn't a particularly good post but I'd rather not have to rewrite it. Oh, and about that app update I installed yesterday--I think it's got a bug.

If you decide to repent and make that post reappear tomorrow, I might be able to forgive this grievous offense.  Otherwise we are going to have to figure out how to slide this thing on over to wordpress.

Consider yourself warned Blogger.

Do Not Be Anxious

It's looking like we are a go for surgery tomorrow. We did chest X-Rays and an RSV test to make sure your mild congestion is just that, and everything came out clear.  So we will report for duty at 5:30am and if all goes as planned we should be home in time for your afternoon nap.

Your first year of life brought at least 12 surgeries--at some point I lost count. During that time I assumed we would always be regulars at the TCH OR. A month before Liam was born we placed your shunt, and an incision hasn't been made since.  That in itself is miraculous--50% of shunts have to be replaced within the first two years. But here we are sitting pretty at 3 years and 1 month.

Clearly I am no newbie to sending my children into surgery and this one is minor compared to others. Then why so anxious? Because losing a child changes everything.  And when I let my brain swim in the dangerous waters of "what if"....what if there are complications? what if something goes very wrong? what if I have to leave the hospital without a baby again?...I feel the despair engulfing me, pulling me down into the abyss. It is all I can do to twist out of it's clutches, push for the light and gasp for air the instant it hits my skin. But as I stand dripping on the shore, remembering those seconds trapped below, I am certain another loss could be my undoing. Please Jesus let it not be so.

Yet this evening, a peace settled over my heart.  My tension melted away. God has always held you firmly in his hand, ordained your days. I know his plan for you is good.  I know his plan for ME is good. So I will not be anxious. I will let the peace of God which transcends all understanding guard my heart and my mind in Christ Jesus.  Over this surgery and the rest of your days.

(Update 11/16: I listened to this sermon by Steven Furtick this afternoon.  Would have been ideal for yesterday, but I still think it is worth posting here as a reminder for the next time I feel anxious.


Anxiety: Worry Don't Work
www.elevationchurch.org/sermons/treatment/part1 )

Whooo-whoooo's the cutest owl?

This little owl fit in perfectly with our camp theme for Trunk or Treat this year.  You are so stinking cute.

Lost and Found

Last Friday I was so amazed at how God told me where your contact was hiding.  For the rest of the day I was on a mountain top.  Until we when went to church that evening and lost it again.  Good gracious.  We did everything right this time.  Checked before we got there, checked when we picked you up, searched high and low in that nursery. Gone.

When we got home I (half) jokingly walked over to your wheelchair and checked under your cushion, telling Daddy maybe I overlooked the other four from my dream.

So today when your classroom nurse--who we think is absolutely amazing for more reasons than just this one--emailed me that she hadn't seen you wearing a contact for a few days, I explained what happened. A couple hours later I got this response:

"Lost and found!!! I went to set up Audrey’s pump with water and low and behold a contact was in the net basket at the back of her stroller...Nothing like finding $250 bucks on a Friday morning to put a smile on a face!! :-)"

So incredible! Audrey, it's obvious to me that God thinks your vision is important.  He wants you to see!

(Side note: There is no way this contact is the same one you lost at church, because you didn't even have your wheelchair at church. But the location in the basket and angle of the chair makes it very likely that it fell out when I  checked underneath the cushion.  That would make two out of five from my dream!)

I Had A Dream

After searching off and on for that blasted contact much of yesterday, I went to bed bummed.  But then….I had a dream.

I dreamt that I pulled out the bottom cushion of your wheelchair and found not one, not two, but FIVE contacts hiding under there. My dreams so often come true that I woke up and knew exactly what to do.

Poised to catch the contacts that were about to come cascading down, I pulled out the bottom cushion of your wheelchair and found not one, not two, but—

Ok, just ONE of your contacts.  But one is all we really need. They are super thick and don’t get dried out like normal contacts, so I cleaned that sucker off and stuck it in your good eye.

I love it when God speaks to me in my dreams! That is seriously cool, right?

Loss of Contact

As a medical mama, I get most aggravated over eyes and meds.  These are the two things that seem to never go right around here and are the source of my greatest frustrations.  Today it’s the eyes.

Insurance will pay for one pair of your contacts every three months.  Losing them before that time is up means we are out of pocket $250. Per eye. I would have no reservations paying that IF there was a guarantee that those contacts would stick around.  But there’s not.

Take this month for example.  Thanks to backorders and shipping delays you were without contacts for three weeks. Once they arrived the first one was lost after two days.  Your right eye we are told is completely blind so technically it doesn't need a contact, although I like to keep one in there just in case.  I figure it is best to treat that eye like it can see, rather than damage it further by assuming it is blind. But when we are down to only one contact it has to go in the left. That one was lost this morning only 10 minutes after I put it in. How does that happen??

I’ll tell you how it happens. If I don’t put the contacts in right, make sure they are perfectly aligned or check often enough to make sure they are still in place, you rub your eyes.  Well of course you do! Knowing we lost a contact and it was probably my fault is one of the quickest ways to make me grouchy.

So now we are faced with the decision.  Go nearly three months without any contacts (which for you equates to complete blindness) or order the contacts taking the risk that in a few days we might find ourselves in the same situation—blind and but now out $500?

Think, think, think…

Bugged Out

It took you longer to bounce back from your "Audrey episode" this time than it usually does. When Liam woke up yesterday morning vomiting, it made me wonder if you had the same bug. Last night it hit Daddy and took me down a few hours later.  Since you still hadn't fully recovered by this afternoon, it seems most likely that you were sick-sick rather than Audrey-sick.

That left us no choice but to cancel the brow surgery that was scheduled for tomorrow morning. I am so ready to get this taken care of for you and protect your "good" eye. But after losing Luke, I am not willing to take any chances.  This is a minor procedure with our greatest risks being infection and anesthesia. Still, I am as concerned I ever have been for a major surgery before.  I don't think my heart could take--well I don't even want to type it out.  I just want everything to go smoothly, get in, get out, and not take any unnecessary risks.

We don't have a new date yet, but it will most likely be a few weeks off.  I'll work on getting that scheduled, you work on getting healthy.

Gecko Grief

Yesterday a gecko made his way into the house. In six years of living here, that has happened two other times.  Liam helped take care of the most recent of these. The other I was pregnant with you, and since I didn't keep a blog during that time, I thought I'd share this memory with you.

I woke up during the night--probably to go to the bathroom--and went to the kitchen for a drink of water.  On my way back to bed something caught my eye on the living room floor, slightly illuminated by the moonlight.  Everything is a bit more ominous in the dark, so rather than just scooping it up, I bent down and poked it, looking for clues.  My first thought was a gummy worm, but knew that wasn't right, so I poked it again.  Slowly, as my eyes somewhat adjusted, a thought registered in my mind and I caused me to take a couple steps back.  I flipped the light switch on the wall, and walked back to the unidentified object with dread.  I looked down, and as my fears were confirmed, let out a terrified scream...or two...or more.  Daddy had been sleeping but ran into the living room faster than I would have thought possible, certain I had cut off my hand or was being held at gunpoint.  When all he found was a gecko on the floor, he was pretty stunned.

But to me it wasn't just a gecko. It was a gecko that had been torn apart by our cats and I had touched it.  TWICE. Plus, this one was transparent and I could see all of it's gross insides through its thin skin. And the eyes...ewww, the eyes. I tried to explain all this through my sobs while holding my right hand out to the side as if it was leprous. Though he didn't understand, Daddy pretended he did and walked me to the kitchen sink so I could wash my hands. Once there I refused to touch my right hand with my left.  So he washed it for me.

In hindsight I'm thinking hormones might have played a small role in this situation.

Sick Shnook

Last night you were up all night long sick.  It's the usual Audrey episode--vomiting, diarrhea, fever. I'm hoping you get back to your normal self quickly so that you can still have your ptosis surgery on Friday.  This surgery is way overdue--an infection this close to your "good" eye makes me nervous.  A couple times your lid has swollen and your eye has gotten a little gunky.  We've got to protect whatever vision you have!

Revival

I am so behind on your blog.  Really I am behind on everybody's, but yours more than the rest. Catching up on the last several months seems like a huge task so I put it off, putting me further behind, which overwhelms me all the more. See this cycle I am stuck in?

Even though it doesn't show, your blog is special to me. Now that Luke is gone I am so grateful for his blog and regret that I didn't write at all for his last month. My only consolation is that the time I didn't spend recording memories was time spent making them. I know the day will most likely come (hopefully very far from now) when your blog will have just as much importance as Luke's does now. So my plan is to just jump in and start writing again and then go back and fill in the last nine months with whatever I can, whenever I can.

So here we go...the revival of your blog starts......NOW!

Suture Situation

There is one suture from your ptosis surgery nearly four years ago that occasionally gets infected.  It swells up and a hard lump forms in the middle of your brow. A couple weeks of antibiotics usually takes care of it.  But this last time the meds didn't help. The pressure from the pus got so great that it formed a pimple on your brow.  This pimple popped and scabbed. The pus from the still present infection kept the scab moist from underneath, making it easy to accidentally scrape off when changing your clothes or in the bath. After a couple months and several rounds of new scabs, I can now plainly see the suture whenever a scab doesn't cover it.

With Luke's medical issues and then death, many things that would otherwise have been considered priority were neglected. This is one of those things.  I should have had it taken care of much sooner, but it is finally at the top of my to-do list.

So today we saw Dr. U and he agreed, it needs to be removed.  The plan is to have a surgery to remove the suture, let it heal completely and then go back in to sling the lid up if necessary.  He says occasionally there is enough scar tissue that there is no need to repeat the surgery.  Definitely hoping that is the case for you!

Birthday Princess

You came home from school today with a birthday crown.  Four looks good on you.

Mother's Day 2012

You are the shnook who made me a mother almost FOUR years ago! My does time fly. It has been the most challenging and rewarding four years I could imagine.  Thanks for being pure sweetness all along the way.  And thanks for being the one child willing to smile in my attempt to take a photo with the three of you.  I can always count on you to be cheery. You are my superstar.

Let it rain!

Over the course of this entire school year, it has only rained three times as we loaded you up on the school bus.  This was one of those mornings.  Fortunately, we have this nifty wheelchair rain jacket.  It keeps you cozy dry...assuming you don't stick your hand out of the hole to feel the raindrops.You sure are a cute one Audrey Lee.

My Little Pony

I am certain you have the most adorable pony tail ever.  Too bad it only stays put for about 30 seconds. Daddy calls you "Herbal Essence" because your hands are constantly in your hair, mussing, pulling and twisting.  I'm hoping now that you have seen how cute it is you will decide to leave it alone.

Brothers and Sister

You are going to love your new little brother when he comes home.  He makes all kinds of squeaky, silly sounds that are perfect for your sense of humor. I remember how much you immediately loved Liam.  And I can't wait to see how you react to Luke.

Here's a walk down memory lane from the day we brought Liam home.


Here you reached so purposefully for him...and gave him his first lesson on learning your "sick" signs.

Wheelchair Revelation

Today I got the call from school that you were extra quiet, and had a temp of 99.9—definitely a fever for my little girl who like to hang out around 97.  Since I was on the way to the hospital to see Luke, MiMi went by our house to get your carseat, and then to school to pick you up. When you got home, MiMi says you still felt warm, but seemed to be feeling ok.  I think it was just a short lived Audrey episode; last night you threw up quite a bit and must have gotten it all out of your system by naptime.

I’m sorry you felt bad.  BUT.  Something great did happen.  Your teachers/nurse showed MiMi how to collapse your wheelchair without removing the seat! For years we have been taking that heavy, cumbersome seat off to load it into the car (where it did not fit nicely) and then fought with it to reattach it when unloading.  When we first got the chair, we were told that was how it must be done.  This makes our lives so much easier!

I excitedly showed Daddy and his response was, “Huh.” I asked, “Bittersweet, isn’t it?”   He said, “Yeah, just remembering all those smashed fingers, scraped knuckles and man hours taking this thing apart.”  But the man loves efficiency almost as much as I do, so he agrees that this is a great day.

Missing You

My sweet girl.  You can't act out like Liam, but I can tell you know something is different around here, and you don't necessarily like it.  You are more sensitive than usual, and cry out for attention more often. Whenever I get a chance to sit and love on you, you "hold" me tighter around my arm.

I don't blame you Shnook.  I miss you too.

New Goals for 2012

Because you are a superstar, Mrs. C sent home new goals for you to master this semester. And they are...drumroll please...

*Explore a variety of objects by grasping and holding in each hand 3-5 seconds in 2/5 trials.

*On contrasting backgrounds Audrey will fixate and track objects horizontally to broaden her visual field in 2/5 trials.

*Audrey will develop more purposeful switch use patterns to answer questions, make a statement or make request within 15 seconds using up to 3 verbal and 3 physical prompts in 3/5 trials.

*In a variety of positions and in a variety of activities, Audrey will bring hands together midline to clap or manipulate objects with up to 3 verbal prompts and 3 physical prompts in 2/5 trials.

It's exciting for Daddy and I to imagine you doing these things, especially number three. Work hard so we can visit and watch you show off your new skills!

To my precious Audrey:

Sweet, sweet Audrey. You are already a big sister, so you know what to expect. This time will be a bit different than with brother, although you have been on the other side of this as the new baby who needs to spend some time at the hospital getting healthy.

Throughout this entire pregnancy, you have given me so much hope and strength. When I've mourned for the baby that could have been, I think of the enormous blessing you are to our family. When I get overwhelmed thinking of the journey ahead of us, I look back on how far you've come, and how much fun we've had along the way.

You are so special. I'm sure even I don't realize the full impact you have made on more than just your little world. Anybody who meets you or hears your story loves you. Everything about your life is miraculous. Just the other day I was reminded yet again how amazing it is that you are so happy and healthy at 3.5 years old. A mom wrote into the SLOS group to tell us about her son who died a year ago. He was three months old, on the severe end of the spectrum. She listed the complications he had--the list was long. But there wasn't any item on it you haven't dealt with, and you could have added several more. I cried as I read that email; for that mom who lost her firstborn and for myself because it could have been me.

My prayer, even hours before her birth, is for Abbey to be healthy. But if God has different plans, part of me is excited to bring home a sister so similar to you. The two of you will no doubt have a very special relationship.

Thanks for making me a mom. You were so unexpected, but also so welcomed. I couldn't imagine our family any different than what it is. Sit tight and I'll bring you that new sister as quick as I can.

I love you my shnookity!

School Girl

You must know school is starting up again tomorrow, because today you woke up back to your normal self. Your feeling good, tolerating full feeds, happy little self. I'm so relieved.

I'm hoping you have a good first day back. Because you haven't felt well, we have taken it very easy around here. You've been in your chair rarely, and in your stander rarer still. I've got a feeling you are going to come home exhausted tomorrow!