Popi the Great

Anyone who has a baby knows that diaper rashes, aside from colic, are probably one of the most challenging occurrences with those sweet little people.  One minute you have a perfectly normal, sweet, happy-go-lucky angel and a few dirty diapers later the angel is screaming as if a thousand hornets are jabbing at her skin.  Or is that just what happens to us?  Yeah, didn’t think so!  The thing with diaper rash’d babies is that you know there is an end in sight.  For Ava, it isn’t so simple.  Because she can’t stand or walk, and because she wears a diaper, rashes are habitual.  We’ll be dealing with them when she’s twenty.  Mix in hot sticky south Mississippi summer heat and a new food in the diet and that only makes matters worse.  Remember how your heart would break when your newborn screamed and you couldn’t comfort them?  That’s how I still feel about Ava, except for she is five and I don’t know why, but that makes my heart break more.  It just isn’t supposed to happen anymore, you know?  I know it’s just a diaper rash and they’re not a big deal, but it hurts when your baby hurts, and it hurts a little extra when your baby already has to hurt from so many other unfair things.

Today we had a diaper rash invasion.  Ava woke up with a red bottom and I covered her in baby petroleum jelly.  It worked for most of the day, and I felt pleased that we had somehow managed to make it almost an entire summer without any major “down there” crises’.  HALLELUJAH (but…oops…I was wrong!)  This evening Dylan, my eldest, and I went on a date to get a birthday gift for his friend-girl.  We needed that time together after butting heads for the last few days, and I think my husband really understood that.  Drew stayed home with Ava and Dylan and I went along on our way.  We had so much fun in town shopping for Abi that I didn’t even realize we hadn’t heard from our home base at all, which is totally unusual for our family.  When we got home, Drew came straight up to me and said “Ava’s rash has gotten really bad…” and before he could finish I ran straight to her, half expecting to find a screaming, needy baby waiting for Mommy to save the day.  What I found instead was a calm little girl with a fresh diaper, all thanks to her popi.  Her rash had indeed gotten worse, so much so that we needed a stronger cream to cover and medicate it.  Who left immediately for it during his time off (which is rare in itself!)?  Popi, of course!  Who went back to the store I had just left and came home so fast his little girl didn’t realize he was missing? Popi.  Who helped her booty and calmed her mommy’s nerves in a heartbeat?  Popi.  Ladies, never ever take for a granted having a good husband/daddy.  I certainly never will.  Drew has been so wonderful for Ava and I, and I know he has always been for Dylan and Connor. 

Afterwards, Dylan whispered to me, “Mom, it makes me upset when Ava is hurt.  I know that had to hurt a lot and I know she is happy dad got her that medicine.  Dad loves her a lot, doesn’t he?”  I told him of course he does, and I thanked God that our boys have a good example of a daddy who is there. I’m happy to report that Ava has not cried at all again since her popi returned home with her medicine, and Dylan had a good time afterwards hearing stories from Drew about when he was a baby in London and teething and Drew had to run out and buy “nappy cream” for his little rashes.  Who knew the English saying “nappy cream”  could sound so funny to a 9-year-old!    

Point of today’s post:  When you have a family who loves each other so much, it shouldn’t take a major, earth shattering crisis to reminded of how much you love and care for one another.  Sometimes all it takes is a little girl with a need and a popi with a big heart. He is Daddy the Great.  Keeper of our hearts.  The binder of our souls.  We are so incredibly blessed! =)

Here is a picture I took of my little princess and her popi soon after he solved the diaper rash disastor.  I love to see these two snuggling!

And for those of you wondering about Armor…well, I didn’t quite make it.  The morning after my “invitation” I tried to tell Connor how wonderful of a time I had with them but he didn’t buy it. “MOMMMMM! You didn’t go there because WE weren’t there! DUH.  Me and Abuh went to a new land.  It’s called Planet Baby.  It’s where she came from.”

(sigh) I guess that was his polite way of telling me they aren’t quite ready to be joined in Armor. That’s okay, though.  I kind of like hearing the stories on “this side” once they return. =)

Welcome to Armor

What a wonderful day this has been!!

To start, Dylan woke up first and made himself breakfast (allowing me to sleep in).  It’s so hard to watch your children grow up, but there are benefits to be had!  He even cleaned his own mess, which in Dylan World is something that happens as often Ava stands up and runs in circles all by herself.  Needless to say, I was so grateful!

Exactly one hour later, Connor and Ava woke up.  They usually wake up at the same time, but my explanation for it is much different from his. =)  My eyes tell me that Ava wakes up as soon as Connor jumps in her bed, every single morning.  His mouth tells me that they dream together, so of course they wake up at the same time when they are ready to leave their dream land.  I’m so happy they had another “experience” with their dream world last night because I’ve been waiting for an opportunity to post about it.  You will not believe it when you read about it, and I know this because I can hardly believe it myself.  What I do know is that Connor and Ava have a connection unlike any I have ever seen between too children, and because of that (and his imagination), myself and so many people have been exposed to a “real” personality for Ava.  His story telling has made our angel more human and more relatable.  It’s the best gift he could ever give to me.

Here we go!  Connor first began telling me about his dreamland with Ava many, many months ago. Two years ago, actually.  He began by telling me things he and Ava did together that are physically impossible for her, and I laughed it off to myself.  His imagination is beautiful.  He has a writer’s mind.  I can’t wait to see how it develops, and at the time, that’s what I thought was happening.  There was one morning thought when I accidentally let my “laugh” slip, and he heard me, became angry and stormed off.  I tried to console him and told him that I love to hear the stories about his adventures with his sister, but I don’t ever see her walking or talking like he does so it makes me smile to hear him tell me these things.  “Mom,” he explained to me, “She does these things in our dream world.  Well, she can talk to me in real life but it’s very, very quiet.  I’m the only one who can hear her.  She does the rest of those things in our Land.”

He had my attention.

The last few months have been spent very patiently letting Connor reveal to me (and now he is even sharing with many of our family members) the details of his dream world with Ava.  It’s the kind of stuff that gives me chills even now just to remember the first time he told me each thing. 

So far, we’ve learned from Connor that his and Ava’s dream world is named Armor for an obvious reason: Ava is safe there.  Grown-ups aren’t allowed there unless they’re invited (hmm..is my son the next C.S. Lewis?), and the only way to get there is through sleep (of course) and there is a door you have to open after you fall asleep.  The door opens at 8:30 when he and Ava go to bed, and closes in the morning when they are tired of Armor and ready to come back.  In the beginning, Ava didn’t have special powers there, but she was normal, and that’s extraordinary for herself.  She takes a wheelchair to the door, and once she crosses, she can walk, talk, make funny jokes, and pretend to be anything she wants to be, just like Connor.  He tells me things she says, and how she plays.  The entity of Ava he has created for Armor is as witty and wild as he is.  There are separate lands in Armor, one for boys and one for girls.  They run on a line in between and whoever wins the race has to allow the other to play on their side.  They are best friends in Armor.  As time has gone on and his imagination has been growing, super powers have been obtained.  In Armor, Ava knows how to zap things and turn them to dust, and Connor knows how to zap the dust and create something better than it was to begin with.  She doesn’t have to wear diapers in Armor and they get to eat anything they want.  Chocolate milk is everywhere.  I joked with Connor once and told him that Armor sounds like heaven and he respond by saying “It is kind of like heaven, but it’s the kind of heaven that’s after this world and before the REAL heaven. DUH.” =) There are so many more details about Armor that I’ve left out (it would take PAGES of typing!)

Every morning when Connor tells me about their latest adventure, Ava closes her eyes and smiles as if she’s right there in Armor.  I think any good child psychologist would tell you this is how Connor copes with having a severely disabled sister, and that I entertain the idea by letting him tell me stories because that’s how I cope with having a disabled daughter, but I’m telling you…those kids are on to something.  One night a few months ago, Ava was having a really difficult time with seizures so Drew and I stayed up with her for the entire night.  We kept her downstairs in the study next to our room so that she wouldn’t keep the boys awake, and because of that they had no idea she was having a “bad night”.  The next morning, Connor woke up earlier than usual and very ill.  He walked up to Ava, with his eyebrows furrowed, and said “What HAPPENED?” then turned to me and said, “Mom, Abuh didn’t go to our dream land ALL NIGHT!”  My jaw dropped.  Of course she didn’t go, she was awake.  I told him that and he calmed down.  I can’t explain things like that, and I never will be able to, but I am so grateful that God has allowed him to see her in a different light.  Even if it’s his imagination, God’s the one who gave it to him.  Who’s to say he’s not telling the truth? =)

What worries me sometimes is that one day he’ll grow up and the stories will end.  I wonder if he’ll remember any of this?  I record him telling me stories every chance I get.  I hope he never, ever loses this memory.

This morning we had a break through.  “Well, now we have things in our land that change their shape.  They’re not bad guys but they know how to look like bad guys to be funny.  They know how to make themselves into a bridge if we need a bridge.  Abuh always needs bridges because she hates water! And last night Abuh pretended to be a slobber monster.  Well, she’s just trying to be funny like the guys that change shape.  She’s not really a slobber monster. Can you come tonight and bring Cleo cat? I will show you how to get there.”

So there you go – my first official invitation into Armor! See you there, kiddos! Hope Momma  can keep up with the long-legged Aicardi girl who can do anything there. =)

This has been an EXCEPTIONALLY great week!  Not that I was shocked to find this out, but my whole community (and then some…) are as in love with my little Ava as I am.  A few days ago, I posted on Facebook about the stress of budgeting for a wheelchair van for Ava, and within minutes, dozens of people were working and plotting ways to fundraise for our princess.  By the next day, a Facebook page “Wheels 4 Ava” had been created, and it is now up to nearly 300 members…ALL being super supportive.  Restaurants are working on donations, as well as private donations.  Rummage sales and other benefits are being scheduled.  Two of my sweet friends are selling “Wheels 4 Ava” t-shirts….I’m just blown away. BLOWN away!! I want to thank all of you, over and over again, for all of the help you are providing, especially all of the time you’re each making for her.  Drew and I both feel the blessing.  We owe you, friends, and we will return the favor. =) I can’t wait for Ava to meet all of you that are still strangers to us!  And to my blog readers,  I can’t wait to keep you posted from time to time on the fundraising process.  I hope it inspires all of us to pay it forward.

I’m quite happy to have the WONDERFUL distraction of fundraising for Ava this week, because my heart has been a little achy (for totally selfish reasons!)  Wednesday started Ava’s week long summer stint with her dad and step-mom.  It’s the longest she’s ever been away from me with the exception of two vacations Drew and I have taken together.  I feel so useless here at home with no Princess to care for!  My boys are old enough to do most everything for themselves and let’s be honest, it’s no where near as fun to pick out their clothes and you KNOW they won’t let me do their hair.  I just haven’t realized until recently how co-dependent I am on Ava.  It’s definitely true that when you have a special baby (or any baby!), you grow to need them just as much, if not more, as they need you.  I know Ava enjoys her breaks from Frantic Mommy, and I feel completely secure in knowing that her step-mom, Sara-Claire, loves her and cares for her like her own.  I feel so fortunate that she has someone like that, and that I have someone like that to trust her with.  It also helps that they bought a house only a couple of blocks from ours, so even when she’s away, she’s not far away.  Hey, I wonder if anyone would notice if Ava and I made a paper cup telephone line to string from window to window? =)

Here is a picture of Ava getting ready to be picked up by Sara-Claire for her “vacation”.  Her bag is as big as she is!

I’m much shorter with words today than usual, but I have so much gratefulness on the tip of my tongue.  When I think about where our life was even just three years earlier and compare it to life now…wow.  Thank you, God, for turning things around.  Drew, Dylan, Connor, Ava and I are living life post the happy ending of a fairy tale. Amen!

Mommy = Superhero, in every circumstance.

“If you’re gonna get sick, might as well get sick at a McDonald’s inside a hospital with five sleep deprived doctors staring at you.” – Dylan

Three days ago, Ava had her first of two post-op check-ups with her Ortho in Jackson.  It was one of those days destined to be perfect (or so I thought).  I loaded up Ava, the boys, the wheelchair, and a pink polka-dot backpack filled with diapers and wipes and snacks into the van and we headed out on our trip.  All of the kids were being quiet (shocker!) and we managed to leave early (and ASTRONOMICAL shocker!)  As far as I could tell, Ava’s newest incision had been healing exceptionally well.  There was no dark scarring, and it seemed “sealed” and without any topical infection.  I felt such a relief.  We’d been cooped up for quiet some time until that point.  Being at home didn’t exactly bring freedom because she still remained quarantine and bed bound until Dr. Haber could clear her to do more.  On the way there, my boys, Dylan and Connor, did very well.  Connor and Ava took naps and Dylan read the entire drive to Jackson – that’s every mother’s dream kids, right?  Too bad I had a wake-up call!

Ava’s appointment was scheduled for 8:40 AM.  We pulled into the parking lot at exactly 8:30, however, it took me 16 minutes to wake Connor up, unload the wheelchair, load Ava’s “stuff” into the carriage part of it , seat her in it and buckle her, wake Connor up again, tell Dylan to take is ear buds out and leave his iPod in the car, change Ava into a fresh, drool-free shirt, demand Connor come inside with us, and then cross the parking lot and get inside the building.  I’m always running late, I’m just never actually late.  I get where I’m going quickly…so the fact that we’d left early that particular morning and still managed to walk in 6 minutes late totally made me have heart palpitations.  Dylan rolled Ava to a seat in the waiting area and I pulled all three of our insurance cards out.  I handed them to the receptionist and he asked me what doctor we were seeing.  It was then that I realized we had arrived at the wrong clinic – OOPS!  You see, Ava sees one primary pediatrician and three specialists.  This is the smallest list of doctors she’s ever had at one given time during her life, yet I still managed to make a hassle of it.  I finally answered the man, “Well, not a doctor that’s here!”, and then quickly shuffled my children back outside before I could hear them all laughing at me (oh, yeah…you know they did!!)  Fifteen minutes later, we arrived at the CORRECT clinic, and my children exploded.  Connor decided he would rather be “anywhere in the world than at a baby hospital with annoying babies everywhere.”  Dylan decided he’d rather be anywhere than near Connor and Ava, and Ava decided she would rather be anywhere than sitting in her wheel chair.  That’s when I snapped this shot:

You all know how long it takes to see a doctor and that you never actually see them at the time scheduled.  Well, at a hospital as large as the one Ava goes to, you’re lucky to even get to see the doctor is you’re as late as we are.  With that being said, we waited and waited…and waited some more.  All the while, I noticed Connor sleeping A LOT. 

It wasn’t “normal” sleeping, either.  He wouldn’t budge and he wanted me to carry him.   He totally relapsed into toddler mode and I didn’t know what to do.  I thought it had everything to do with the fact that all three children were bored and irritable and freezing their tushies off (silly hospitals have to keep it SO cold!)  I felt like a terrible mom, and thought feverishly about how to make it up to them.  After her appointment, (everything looked great!) the solution came to me.  UMMC has a McDonald’s inside of the hospital, and a multi-level parking garage with the top level fully exposing the sky, tree tops around it, and a full access view of the rooftop emergency chopper landing pad.  I just knew my boys would love it, and at hearing the idea of it, they did!  We loaded everything again and left the free parking lot for the parking garage and drove to the top.  Dylan picked the perfect spot, and while I unloaded Ava and her things again, the boys looked around in awe at being on top of a roof with a view.  Funny how easy it is to impress children isn’t it?  We walked across the street in a glass walled bridge and made our way back into the hospital.  The McDonald’s is on the first floor, but the boys wanted to ride the elevator, so we made an excuse to visit a nurse friend and headed up and down the bottom five floors of the children’s hospital wing and then finally headed towards McDonald’s.  On the elevator, Connor told me he was freezing.  By the time we got to McDonald’s he was trying to take his shirt and pants off because he was so hot.  That’s when I realized he was feverish. =(  I picked him up, asked Dylan to push Ava, and we rushed to two in-hospital pharmacies until we found one that sold children’s ibuprofen.  His fever went away in minutes, and I thought we could make it through our meal.  After all, the day had been a long one and I just wanted my babies to be able to do something fun. I ordered the food at McDonald’s and sat all three children at a bar near a table of doctors (I don’t know why...but doesn’t that just seem safer?) as I waited on our order.  Again, Connor fell asleep.  I brought our hotcakes over and sat down with the kids, and just as soon as I could ask how he felt, Connor puked ALL OVER ME.  I tried to turn the plastic lid of the hotcake plate into a makeshift puke pot but there just wasn’t enough time.  Seeing Connor sick, me being stressed to the max, and both of us covered in puke didn’t stop Ava from laughing.  I looked up at Dylan for help, with his latte and skinny jeans and face to serious to belong to a kid his age.  He looked right past Connor and said, “Well, if you’re gonna get sick, might as well get sick at a McDonald’s inside a hospital with five sleep-deprived doctors staring at you,” then went right back to his breakfast.

Now of course, after the fact, this is a funny story for me to share.  Connor got better and I got cleaned up.  But I tell this as a reminder to all of you who mother’s who feel as if I have been given a greater responsibility than you because I have a special needs baby.  I haven’t.  Yes, Ava is a different kind of responsibility, and that can sometimes be challenging and often times scary.  But the truth is, given the choice, most days I’d rather be anywhere than in McDonald’s covered in puke, even with sleep-deprived doctors at our rescue.  Kudos to you, Mommies.  We are all super heroes. =)

Sitting up!

It didn't occur to me until now that you might want to see the princess "doing her very best". =)

Home Sweet Home

Dylan: How long did her surgery take? Did she have to get a lot of morphine afterwards? What kind of stitching did they use this time?

Connor: I just need to know if they have chocolate milk at that hospital.  Did they even let her have chocolate milk??

We made it home!  On Wednesday around lunch, Ava had surgery to cleanse the exposed titanium rod and then re-close the area.   Dr. Haber and his team were able to cut away some of her scar tissue, make the incision longer, and then completely reseal the entire thing without having to get Plastics involved.  Honestly, the whole area looks better than it did before, so I’m trusting that this time around she will heal faster, and correctly (assuming she gets those “wiggles” under control!)  Because of infection, we stayed at the hospital for another 48 hours.  Here is an overview at our post-surgical stay at our Vacation Home:

Eat, sleep, bathe (me, not her -bless it), eat sleep, bathe, eat, sleep…no really, that’s it.

Except for one more thing…AVA SAT UP!  She SAT up!  On Thursday evening at approximately 9:30 P.M.,  in an attempt to get a better view of Phianus and Ferb, my little girl rocked herself up and off of her surgical wedge with her noggin, braced her hands and elbows in front of her just right, and sat up on her own. 

I cried, and I cried, and then I took pictures, and then I cried,  and then I sent a GI-NORMOUS group text to brag, and then I Facebook’d it, and then I cried, and then I made the nurse come and see….all because years ago my little princess couldn’t even hold a rattle.  Not only did she have severely underdeveloped muscle tone, but also there was a severe lack of motivation in her.  Those days were awkward for us both.  I longed for the opportunity to be a “let me tell you what she’s done now” kind of mom, but at the same time, I felt like other mom’s should be jealous because I have a forever-baby.  Ava will never lie to me.  She’ll never forget her homework at school.  When she’s sixteen, she’ll be having date nights at home with her Popi and not some boy who is clearly no good for her.  It should be understood that we LOVE having our forever-baby for so many reasons, but it still hurts to see so many empty spaces in the milestones section of her baby book.  My heart is so conflicted.

Ava has spent many days in therapy (I’d guess around 450, plus).  She has had the most amazing teachers a mother could ever dream up for her child. During her 5 year stint with The Children’s Center of the University of Southern Miss, she learned to express emotion, she learned to have empathy for others, she learned how to say “No”, “Mah”, and “Uh huh”.  Ava learned to overcome sensory issues that kept her feet off of the ground for two years.  She learned to stretch on her own and give a “thumbs up” and to use a talk box for communication.  She even learned to hold that rattle.  That school (and Ava’s titanium rods!) did wonders for her development, but nothing will ever compare to what her step-brothers Dylan and Connor have done.

Something switched on in her when she was introduced to the boys right before her 3^rd birthday.  Dylan, the boy genius, instantly needed to know more.   He wanted to be told an answer for every issue concerning her, and when I couldn’t give one he vowed to figure it out for his self and let me know.  He hasn’t slowed down since.  Connor, who is less that a year older than her, quickly developed a less matter-of-fact and more extraordinary, imaginary type of relationship with her.  For years now he has told me what Ava is thinking and what she wants.  She fawns over him like he is THE coolest kid on the block.  For Connor, she does more.  For Connor, she learned to say her own name…incorrectly, but exactly as he pronounces it (Abuh). Connor is her best friend, and her best teacher, and I don’t think he even realizes the power he has over her! I love seeing her blossom under the care of Dylan and the instruction of Connor. 

The day after we got home from the hospital (on Connor’s 6^th birthday!), I saw him looking at the pictures I’d taken of Ava sitting up.  He looked at them, looked at her, looked at the pictures again then ran up to her. With the sweetest voice and hands petting the top of her head he said, “That’s a good girl, Abuh! You did your very best! Do you want a treat?” So I guess Ava is his pet, now. J Those kids always make me laugh! I know the boys’ perceptions of Ava will change as they grow older and able to understand more, but what I hope will never change is the love they have for their little sister.

Thank you all for the prayers while we waited and wondered.  It warms me to see people following Ava’s story! Isn’t she something else? J

A Midsummer Night's Nightmare? Definitely.

Yesterday evening around 6 o'clock, I flipped Ava over to check her nearly healed surgery incisions and caught a climpse of something shiny on her back. Panic set in. She had been sitting on the couch next to my husband, Drew, so I asked him to take a look because I was sure that a titanium rod was breaking through the skin. "WHAT?" he asked. Ava wasn't crying, she wasn't nervous. In fact, she was so relaxed that she let her kitten keep playing in her hair. Drew and I flipped her over once more and looked together. That time I was able to see the serial number on the rods. I knew without a doubt we had a serious problem. My heart sank and my stomach knotted, and I called the hospital.

The funny thing about being the parent of a medically fragile child, is that you are always prepared for the worst but never really ready for the worst. I felt so heavy with worry, yet while I waited for the on-call ortho to call back with instructions, Drew and I managed to get everyone cleaned and dressed, 3 overnight bags packed, money packed, chargers packed, family notified, sitter arranged for the boys. We didn't even have to ask each other who needed to do what, we just did it. It's amazing how good we have become at planning for the unplanned! I can't say it has always been that way, though. The first two years of Ava's life were total chaos. It took many emergency trips to our "vacation home" before I remembered to pack enough quarters for snacks, or to bring winter clothes to make the cold environment comfortable, even if it were boiling outside. I can think of many times where I'd have to call my parents and ask them to bring to Jackson whatever I'd forgotten. This time around, I knew where everything was and had it bagged immediately (prepared for the worst). But I was so terrified to even touch her back long enough to pick her up and put her in the car (no where near ready for it).

One hour into our drive to Jackson, Ava started sobbing and I lost it. We cried together for a good ten minutes and then she looked at me, said "Mah" (mom), and stopped. She stared at me with such a peaceful face until I stopped crying and then she turned and looked out of her window for the rest of the ride. She has always been tougher than she should have to be, but the older she gets, the tougher she becomes for me. I knew exactly why she looked at me and said that. She needed for me to be mommy, her transporter, and totally focused. How could I have made that drive if she weren't strong for me?

We arrived at UMMC ER shortly before 9 PM. It was one of those nights where the hospital ER was so swamped that worried visitors poured over until the porch outside by the ambulance drop-off. I took her in with her wheelchair and whispered to the receptionist what happened and what doctors were expecting her. It's not something I wanted anyone around us to hear. For some reason, I'm still not comfortable with how other parents in the ER react to Ava. I used to feel horrible when we'd walk in and see a very worried, very tired mother holding a screaming infant, having waited hours to be seen, and then have the staff whisk away a seemingly perfectly calm Ava immediately. I do realize how unfair it can look. She has such a high tolerance for pain, but she also has a great awareness of how not to stress people. The only problem is sometimes it means her emergencies go unnoticed or seriously downplayed until a much worse problem occurs, which is exactly what happened last night.

Fast forward to 11 PM, 4 XRays revealed there was no break in the rod (Praise Jesus!). It was determined that the tissue on the outermost side of the rod is very thin and weak, and it's believed the rod simply pushed it's way out. At around 1 AM this morning, she was moved to a room and all of the pre-op paper work and visits were completed. Almost as soon as corrective surgery was to begin, we were told that the tissue around the original incision is not healthy enough to sew together, so surgery has been postponed until a decision can be made about how to cover the rod safely and permanently. The risk and worry won't end with that, though. There is a concern that external infection will find it's way inside her, and if any of the infection gets on the exposed titanium, all pieces will have to be taken out and replaced. The last time she had these rods installed, she spent two weeks recovering in PICU and got a trache to help breathing during the recovery process (a trache she ended up keeping for a year and a half). It is not by any means an easy or simple surgery. The second concern is for future lengthening surgeries (which is where the original incision came from this time). Because her organs were so cramped for two years, it's important she have the rods lengthened a half-inch to an inch every 5 to 6 months. Unfortunately, on a child so young there are only so many places to cut and if the tissue is too weak to heal than it is too weak to cut. Ava needs to be at least 10 before the rods are removed permanently, so that her organs will have had a chance to reach full growth potential.

The titanium rod has now been exposed for 17 hours. She's laying in her hospital bed watching cartoons and entertaining anyone who walks into the room. I'm sure she has shown every nurse on the floor her super cool Dora pajamas at least once! She colored a little and looked at book. She babbled to me (I'm sure it was a very interesting story). We've held hands. We took a nap. She's living out this day as if there is absolutely nothing out of sorts with her body. That sweet little girl isn't even upset that she's having to spend every moment on her side (a normally upsetting position for her thanks to sensory issues). Please pray that an answer will be given to the surgeons so that her back can be closed soon. Be sure to thank Him for making such a beautiful, strong little girl and I will thank Him for trusting me to be at her side.

So nice to meet you!

So nice to meet you!

In fact, most of you logging on to this page already know my daughter, Ava.   Somewhere between the delivery room and the parking garage of the hospital as we left, I became known as “Ava’s mom”.  I had no idea what I was in for back then.  I was a mother and not even old enough to rent a car.  I was a mother who was no where near completing college.  I was a mother with just enough money for bills and diapers.  I was a mother of a special needs baby.  Regardless, I was ECSTATIC when I traded in “Paige” for “Ava’s mom”.

Moms really do have a special intuition about their children, and the one I’ve developed with Ava is down right frightening sometimes.  The first experience I had with it was about five months into my pregnancy.  I started having nightmares that my stomach was trying to escape from my body and take the baby with it.  The worst nightmare was so real that I woke up sweating and in pain, and I THOUGHT I saw my abdomen shaking.  She needed me and I couldn’t help her.  Shortly after that, my 19 week ultrasound showed some concern, so I was sent for a “better one” nearly two hours away in Jackson, MS.  The better one revealed that my baby had severe congenital scoliosis.  Ava had positioned herself in such a way that it was impossible to see most of her brain, yet I was assured that the scoliosis was my only concern.   I was told the shaking abdomen could have been infantile spasms – very common in fetuses so young and even newborns.  “She’s otherwise healthy,” I was told.  “We can rule out 87 percent of abnormalities.  She’ll possible have back surgery, but nothing life threatening.”  It didn’t matter, though.   I was devastated.  I waited until I got home and made all of the expected phone calls to reassure everyone that she would be okay.   I lied to everyone.  I told them exactly what was told to me, but Moms know better  and I could feel  it.  I waited until late that night before I cried, but all I could think about was how she wouldn’t play sports.  She wouldn’t be a cheerleader…she would probably have scars on her back from surgeries.  I am so ashamed at myself for hurting so much over her imperfections, and for not realizing it can always be worse (and in our case, is).  We ALL want a perfect baby, but God never allows it, thank goodness, because as I know now that wouldn’t be much fun! 

Ava Brooke was born on May 31, 2006.  She was a healthy weight despite an early arrival, and there were no visible indicators of something wrong other than a strange mark on her head.  The pediatrician at the hospital (not our regular) assured me that the mark was a temporary injury from the delivery (she didn’t want to come but we forced her out…bless her heart).  We went on our marry little way, mom and baby, happy and perfect…but not really.

On August 8, 2006, Ava began to seize.  She was rushed to the hospital nearest to us (in Hattiesburg, MS) and by the time she reached her 50^th seizure of the day she began having trouble breathing and the staff had trouble controlling them.  She was sent to UMMC in Jackson, where she was probed and prodded and observed ….and eventually diagnosed with Aicardi Syndrome.  I was told that she is missing her corpus collosum (the middle part of her brain), is legally blind, would never walk or talk, would have a battle with seizures her entire life, would live like an infanct, would have lung trouble,  she would have stomach trouble…and if we were fortunate, she’d live to be 8.  I wouldn’t let the doctor’s tell me very much in front of my family.  I asked one of the neurologists to finish telling me in the hallway.  Even if for a few minutes longer, I didn’t want the whole world to know that my baby was sick.  I thought, she deserves to be loved.  She deserves to be special for something else. I was so wrong! In fact she is loved very much.  She is incredibly special and gifted THANKS to Aicardi Syndrome.  She has proved me wrong…that stinker. J

In her 5 year life, Ava has fought a variety of spinal, vision, gastrointestinal, breathing and organ growth problems, and tangled ribs (a problem that had to be solved by removing one).  She’s had a trache and currently has three titanium rods supporting her spine and ribs.  She receives all nutrition through a feeding tube due to aspiration.  She seizes every single day, an average of 3 times daily.  She takes 2-4 medications daily.  She’s spent every holiday at least once in a hospital (we like to call them our vacation homes).  Two weeks ago, Ava completed her 8^th surgery – each having total success (she’s pretty amazing, I tell ya…). She’s received speech therapy, occupational therapy, physical therapy, and special instruction several days a week since September 2006.  She breaks my heart and builds me up all at the same time.  She rarely reacts to pain.  Her brave spirit is INCREDIBLE.  I don’t think Ava realizes her ailments aren’t the norm (so nobody tell her!), and she tries so hard to be the same as all of us.  Because of that, she has inspired so many other people. 

Ava doesn’t know how to speak, but she still speaks to all of us.  Her brothers Dylan and Connor have a bond with her that seems other worldly.  Her Popi makes her smile, and treats her as an equal (what every human deserves), and me? Well, I know now that she’s going to be alright…we are ALL going to be alright.  I can’t wait to open up our life to you, and I pray that she encourages you as much as she does us.  No gift deserves to be wasted, especially one like hers. See you again soon ;)