Thursday, December 31, 2015

There's reason to believe...

As we come to the end of what's been another incredibly challenging year, one that's left us with several new diagnosis, several more wrinkles, and much thicker skin, I'm feeling a little relieved.  Although the transition from December 31st to January 1st isn't some magical shift, we often look at it as wiping the slate clean, and winding the timer back to start.  I have said so many times over the last month that I can't wait for this year to be over.  As a mom, it's terrible to wish time to pass, but I'm looking for some relief, and sometimes a new year brings that.  Although we're not very superstitious, we seem to find very bad luck in odd-numbered years.  2012 and 2014 were our easiest years since having Avery, and although it seems silly, I'm really looking forward to 2016 continuing that pattern.

The craziness that is 2015 ensued right away in January, with the first time I had to call an ambulance for Avery.  It was a combination of extremely low blood sugar and a seizure that threatened to take our baby away from us that day.  As a parent, you never shake the memory of that, and the fact that this wasn't the first time, nor the last, makes it even more traumatizing.  It will stay with me forever, and it adds to our daily vigilance.  From that hospital stay on, it's been a constant ride on a hamster wheel.  We added a neurologist, endocrinologist, retina surgeon and psychologist to her already long list of specialists.  And the appointments!  Oh the appointments... I feel like I have lived inside a doctor's office for most of 2015.  Many months, averaging two and three times a week, all to try to determine what is going on with her.  In late spring, we noticed her right cornea was starting to fail.  And the day it was confirmed she'd need her 8th re-transplant, we also took a fun trip to the dentist, and were shocked to learn she had a malformed molar that needed surgery.  So the chaos continued.

The summer was spent continuing to dive into her endocrine issues, as well as her developmental issues.  We walked away with a confirmation that she does not fall on the Autism spectrum, and a better understanding of how her noggin is functioning.  But the cold, hard reality that she has a diagnosis of diffuse neuronal dysfunction, aka, "slow brain activity," and a global developmental delay.  This is all stemming from the meningitis infection she had as a newborn, and all her subsequent brain surgeries and issues.  This didn't change anything, but to see it written on paper is extremely difficult.  It fuels our motivation to keep working with her on a daily basis, and immerse her in as much learning and therapies as she can take.  And honestly, she's doing better than anyone ever expected.

As I explained in a previous post, August greeted us with one of our worst eye-nightmares: a detached retina.  The first two weeks after learning this news were insane, spent on the phone, begging to get into the best doctor sooner than they had scheduled, and basically keep ourselves from completely losing our minds.  If I only knew that it was just the beginning of an excruciating fall and winter.  The day of the planned retina repair, the doctor found that Avery's cornea (only a few months old) was already failing, and because of which, he couldn't get a proper view of the retina to repair it.  Two days later, we were back, plus one cornea surgeon, for a five-hour surgery to re-transplant the cornea and repair the retina.  He explained that it was now a waiting game, and completely in God's hands.  We love that doctor - he is another really empathetic guy and took a lot of time to explain all scenarios to us.  If you can't feel a sense of comfort with these guys, you're in a bad spot, so I'm grateful for all of our good doctors.  And those who haven't been, have been replaced...

Since that day, the right eye has been on a downward spiral.  We faced a sudden cornea rejection in late October.  One day it was fine; the next day it was not.  And when that seemed to turn around, they found that her pressure was not responding.  You need a certain range of pressure in the eye for it to survive.  Too high is glaucoma, and too low is hypotony, which is what Avery has been experiencing since her retina surgery.  They believe that the membrane that produces fluid may be permanently damaged.  After 5 1/2 years of constant, relentless fighting for this eye; an eye that has seen the most surgeries of anything, we learned a few weeks ago that we reached the end of the road.  We sat across from Avery's Ophthalmologist, after he had just finished a procedure that he didn't feel would work, and he said the words we dreaded since we first sat across from him 5 1/2 years ago: "I'm sorry, but I don't see the eye recovering."  He put his hand on my hand and assured us that we have done all we can, and fought quite a fight.  We are now facing "putting the eye to rest."  It was a slow build-up to this point, with so many obstacles along the way, but we never imagined we'd be facing this this year.  It's been like grieving a loss.  And with her "good" eye being not-so-good, we are closer to the possibility that Avery could one day lose all remaining sight.  But for now, we take one day at a time, and make the most out of the days she does have sight.

During all of this eye drama, Avery was being tested for growth hormone deficiency earlier this fall.  Anyone who knows her, knows she's tiny.  At the time of the testing (at 5), she was standing just under 3 feet tall and only 25 pounds.  That's like a small 3-year-old.  So they were trying to determine if it was an endocrine issue.  The results were not what we expected (shocker).  Avery did have sufficient growth hormone, which meant we didn't need to inject her with it on a daily basis (good news).  However, her blood work showed that she had virtually no cortisol (bad news).  This is the fight-or-flight hormone, and is necessary to deal with physical stress and illness.  Her body wasn't producing it.  At the time, she was not symptomatic, but if she encountered any surgery, illness, car accident, shunt issue, etc., she'd require medication to survive it.  Once again, I felt like the floor was dropping out from under me.  I know many of those scenarios are inevitable for us, so facing another life-threatening, medicine-dependent diagnosis was so overwhelming.  We are so thankful we did that original test, though, because we were able to prepare ourselves over the craziness of this fall and winter for adrenal failure issues.  The likely culprit is her life-long dependency on topical steroids for the cornea transplants.  Steroids can impact the body's creation of cortisol, and not only does Avery take them in her eyes, she had just started on a new one for alopecia (yeah, another new issue).  I always had this nagging suspicion in the back of my mind about her steroids, but was assured that there was not literature to support topical steroids causing any major issues.  But it all started to make sense with the diagnosis of adrenal insufficiency; her small size, her eating problems, etc.  Then a few of my Peter's mom friends were talking about the same issues in their children.  We hope to have her added to a case study so there is literature for future kids with similar symptoms.

When the cornea started to reject in October, the only way to stop it is to do continual steroids.  Before the words were coming out of the cornea doctor's mouth, my brain was going 100 miles an hour trying to figure out how we were going to do this.  With the consultation of many of her doctors, we found a regimen to be able to increase steroids to try and save the cornea, but keep her healthy.  She started taking a pill three times a day to make up for her body's lack of cortisol.  But if she gets sick, seriously hurt, or requires anesthesia, she needs a "stress dose" of the medicine.  And in very serious cases, we now have a shot (kind of like an Epi-pen) that goes in her leg.  We spent several hours at the endo office that week, learning how to see signs of adrenal failure, how to give the shot, and different scenarios that we could face.  "This is all manageable, but when adrenal crisis starts, the child will deteriorate very quickly."  That line sticks with me every day.  And we've already seen it in action. This adrenal issue has caused quite the drama over the past 3 months.  We've made about 50 calls to the endocrinologist, two emergency trips to the ER (one while in Chicago), and we've already had to administer that shot.  Which was another traumatizing day.

The toll that this year has taken on us has been significant, but we have managed it.  With each incident, we learn a little more, and get a little stronger.  John and I were sitting up one night recently, recovering after about 5 days of the girl's having the flu, and "how are we going to finish our to-do list before Christmas?" And as we reminisced the monstrous year we've had, we realized that we've really only become stronger in the process.  Yes, there are days when I feel so tired, emotionally drained and beaten down that I feel like the weakest person ever, but overall, I do think this has thickened my skin.  All I have to do is look back 5 years and how I handled things then.  Very little shocks us these days, and unfortunately, we have been living like something else is lurking just around the corner.  But despite being tougher as parents, it's no easier.  With the new adrenal issue, and the added pressure to keep her only functioning eye healthy, it's hard to see a break.  I think that's one of the hardest things right now - not seeing reprieve.  Our parent's have been amazing at giving us breaks; to go to dinner, go to coffee, have a night with friends - or to work (somehow we both still have jobs after taking so much time off!).  Many others offer to help us all the time, which we really appreciate.  And that is sufficient for now.  Someday we will get a longer break, have fun and relax; but it is hard to see that right now.

The light through all of this continues to be Avery's incredible, sometimes unbelievable resilience.  She's doing so well in school, loves her teachers and friends, and comes home smiling every day.  She's doing more and more "typical" things each day, is learning Braille, and becoming much more independent.  We light up with joy each time she does something new, or shows excitement over something.  Lucy is being a good little sister, and although she wishes she got more attention (ahem, terrible twos...), she's starting to "get" that her sissy isn't like all the other kids, and needs a little more attention sometimes.  I'm sure it's a balance we'll be working on all our lives.

Heading into 2016, I'm focusing on being more mindful.  As cliche as it is, it's imperative we live in the moment of the good times, hug our kids tighter and cherish the healthy days.  Because we know what constitutes a "bad day."  We've experienced our own, as well as others who have it so much worse.  As hard as it can be to focus on the positive some days, I know that it can always be worse.  Avery has also made so.much.progress.  Unbelievable progress since she came into the world.  I remind myself of the mountains she's climbed, and the roadblocks she's overcome to get me through the bad thoughts.  And to try not to dwell on the "what-ifs."

There is reason to believe that this coming year will be a good one, and that's all we need.  Happy, healthy 2016 to you all!  Thank you for your support...xo





Tuesday, October 27, 2015

Fall update

Since the drama in August, Avery has had quite the eventful two months.  The roller coaster analogy that her doctors gave us at her birth was the most accurate description of our life that anyone could've given us.  I've said it before, but "resilient" just begins to describe our little girl and how she handles this roller coaster.  And while I've recently hesitated to call her my "inspiration" (after learning from some older kids and adults that not every differently-abled person appreciates that compliment), I still say that she reminds me daily to look at each situation differently, and to be present.

I haven't been posting my usual frequency of updates, and I appreciate the concern and notes from those who follow her regularly.  Basically, I am not sure what to say, or I don't feel particularly positive, so I don't say a whole lot.  The bumps in the road have come one after another and it's too difficult to keep up with in my own head, let alone describe it to friends and family.  If the shoe were on the other foot, and someone was trying to describe to me what goes on inside Avery's body, I would probably glaze over after the first few sentences.  It's not an easy set of circumstances to explain.  She's been described in the past as "medically complex," and I suppose that's the simplest way to sum it up.  People wonder why her eye issues continue, don't "get better," and why other things pop up every other week.  And though I shouldn't care, I do start to worry that people question our judgement - with regard to our choice in doctors and/or her care overall.  I wouldn't be surprised if some people thought we made some of this stuff up!  Trust me, I agree that much of it sounds made up.  I wish I was.  Not many people deal with continual health issues, surgery after surgery, with really no improvement and no end in sight, so I can see how it seems strange and often, unbelievable.  There are few people in our inner circle who hear every last detail, and therefore "get it."  Every single thing about Avery's case is rare and complicated.  At this point, there is no benefit from second opinions or new doctors.  Each time something comes up, we exhaust every possible option and explore every possible solution.  We know this girl and her symptoms like the back of our hands.  She has a wonderful disposition and a big smile, but inside, she's complicated and things are going wrong on a regular basis.  This is why I may seem like a helicopter mom; it's because most of the time, I have to be.  If anyone else walked in my shoes, they would be too.

I've talked before about my close group of friends who are mothers of children who share Avery's diagnoses.  They do walk in my shoes every day, and lately, we are all dealing with a lot with our kids.  We are all asking one simple question that no one can answer: "Why?"  And even though none of us can find the answer, we can be a shoulder to lean on, and send a virtual hug.  Often, we are helping each other brainstorm problems, and backing up each other's gut instincts.  I can't stress enough how vital it is to have this type of support system if you're a parent of a special needs child.  Whether it be autism, cancer, chronic illness, different abilities...anything...I can't say enough about having a friend or group of friends in your shoes.  To go at it alone is not recommended.  I've leaned on these moms on every difficult day, as well as on the good days.  So, a quick "thank you" to them - I love each of you so much.

That "why" word has been in my daily vocabulary for five years, but it's made a more regular appearance again lately.  Avery's right eye just doesn't seem to want to cooperate.  We've just learned some devastating news about the right eye.  It's a long story, but basically, we are reaching the end of the road in terms of options, and at this point, our priority is trying to preserve the health of the eye, rather than wondering if it will ever regain vision.  That's a scary statement.  On top of that, she's acquired some additional health issues, related to her immune and adrenal system.  This makes everything that much more complicated.  The poor kid has been poked and prodded more than usual lately, on top of starting Kindergarten in a brand-new school.  But as everyone knows, she handles it.  She isn't down for long and bounces back with that Avery smile.  I hate that she has to, and doesn't even realize that what she goes through isn't typical.  That her life is interrupted on a daily basis for medication, doctor appointments and obstacles.  I still look at Lucy and am in awe of how easy it is for her.  It's heartbreaking, and even though I have to stay positive and strong for both of them, I feel it whittling away at me every day.  Especially today.  It's been a tough few months and we are exhausted.  We just got the weekend "off" (thanks, mom and dad!) and it was literally the most wonderfully-relaxing 36 hours we've had in a loooooong time.  But the next day, we hit the ground running with this
eye problem.   And that will be our story from now until the end - as John reminds me daily, we just have to keep moving forward.  To end on a totally positive note - Avery is rocking Kindergarten.  We were off to a very rocky start with school, but it's done a 180 and because of that, she's doing so well and has another great team to support her there.  She's already mastered the beginning of the Braille alphabet - much faster than her mom and dad, I might add!
As always, we are grateful for the support of our parents, family and friends - we welcome your continued prayers and good vibes!!

Monday, September 7, 2015

First Day of Kindergarten!

Your new backpack is hanging by the door, the Peppa Pig lunch bag is packed, your outfit is laid out, and I just finished writing out the chalkboard sign for pictures.  Not quite as creative as I'd have hoped, and not nearly as prepared as I want to feel, but we are technically ready for your first day of Kindergarten.  Mentally ready?  Well... we're getting there. 


When you were born, and the we were hit with one issue after another, we had to question constantly whether you would see your first day of Kindergarten.  In those early days of so many question marks, they weren't sure how you would develop... after the meningitis and multiple brain surgeries, the state of your little eyes at birth and the long road of surgeries ahead.  We worried every day if you would walk, talk or see.  Eventually, you started to show us all how miraculous you really are, because one by one, you checked each of those boxes, and erased some of the question marks.  We started to hear at check-ups how amazed they were at how well you were doing.  That they're surprised you're even walking, talking, seeing.  It's a bittersweet thing for a mom and dad to hear that, because we were jumping for joy while still feeling sad that you even had to struggle, or that you looked worse "on paper."  Of course we continue to live with question marks, worries for the future, and that long road ahead.  That will never go away.  Leading up to this day, you've been through more than we could've ever imagined.  But despite all of the surgeries, doctor visits, illnesses, tests, therapies and struggles, you have grown into the happiest, strongest and most beautiful kindergartener that I've ever known.  You remind us daily that whatever we may face, you will be okay.  You have spent the last 2.5 years growing and developing by leaps and bounds in Pre-K.  We are fortunate to live in an area where opportunities and services for differently-abled kids are pretty darn amazing.  From day one, we've had a team guiding our way and making sure that you have access to anything you need.  It truly takes a village, and our village is exceptional.  With their continued support, I have no doubt that you'll keep amazing us all. 


Speaking of that village, you have quite the entourage to help you along the way.  In June, you left behind one of the best group of educators I know, and I worried we'd never be able to match their effort, passion and love for you.  They set the bar high, and letting go of them was like throwing away a security blanket.  But in meeting your new team, I'm confident that they will carry on the same amazing work.  Besides Ms. Barrett, your wonderful new teacher, you have Ms. Laura to continue to teach you how to utilize your cane in getting around this big world; Mr. Joel, your new vision teacher consultant, who will be making sure you have all the equipment you need to see what everyone else is seeing, or experience it in your own way, and to teach you Braille.  Then there's Ms. Karen, your speech therapist (a familiar face from Addams) who will endure your stubborn side as she helps improve your communication; Ms. Amy, your physical therapist, and I know I'm missing someone else.  There are also several parapros who will be making sure you don't rub your eyes, reminding you to keep taking bites at lunch, and helping you navigate this new school.  Over the last few months, we have had several meetings with this incredible team, and everyone is dedicated to making sure you get the most out of your time in school.  We don't even have to worry much, because we believe they will take care of you just like you're their own.  You've already won the hearts of many of them with your adorable smile and personality, walking the halls of Helen Keller like you own the place.  A few people have already commented that you'll have everyone falling in love with you day one.  While we make plans for your year ahead, I can't help but wonder how you will be doing a few months from now, or how I will do, since this will be the longest I've ever let you out of my care.  You'll be gone all day, every week day!  But that's a good thing, because if you really are, it means you're healthy enough to do so.


The weeks leading up to your first day have been hectic - which seems to be the case with many big events in our life.  You had your first retina issue come up at the end of the summer, as well as your brand new cornea (#8) failing shortly after you got it (on what was supposed to be your last day of Pre-school).  The big surgery to fix these issues ended up being just four days ago, and was a pretty big deal, so the doctors want me to stay with you tomorrow, and then wait until next week to go on your own.  Nothing about your life has been typical - so we are continuing the theme and doing Kindergarten on Avery time.  We are no strangers to missing out on things; whether it's plans we had to break, or activities that you just aren't allowed to do.  It sucks and makes us angry and sad, but there's rarely an alternative.  And that's okay.  I was starting to get sad about all of this; how plans rarely go ... as we planned.  But rather than continue to be disappointed every time stuff like this happens, I'm trying to look at it as: this is our life, and it's probably never going to slow down or be easy, so you can either be miserable, or embrace what it is and carry on.  Because in our little world, we have so much to feel grateful for.  For proving early fears wrong that you may never be healthy enough to walk, or talk, or see.  That you may never walk right into your Kindergarten class, shouting, "Ms. Barrett is here!"  Things could be so, so much worse, and that is the perspective we need to keep.  I'm so proud of you - it can't be said enough.  Kindergarten has never seen a cooler chick.


Some of your current favorites:
  • the ipad!  You can navigate YouTube, Amazon Instant Video and the Nick Jr. app like a pro.
  • Reading - especially books about Peppa Pig, Bubble Guppies, Paw Patrol or Dora.  You just got a special Leap pen reader and you're doing a great job of holding it.  You also make up your own stories by looking at the pictures.  It's adorable.
  • Exploring new places, especially stores like Barnes & Noble
Some of your Avery-isms:
  • Hearing a familiar voice, and announcing as loud as you can that they're "here!!"
  • Cracking up when we tell you your feet are stinky, or your hair is messy or anything is yucky or gross.
  • Turning the lights in the basement off, and giggling as you wait for a reaction.
  • Never wanting to finish a meal - announcing "all done" after two bites.  Except for cookies or anything with sugar!
  • Telling us who you're going to see that day.  "We're going to see... Dr. Dunn/Mrs. Kay (your former parapro who you love)/Grammy's house/Auntie Kaffy, etc... fill in the blank." and you'll repeat it over and over.
  • Asking us to roll the car window down.

Tuesday, September 1, 2015

The Wait

Since Avery was a tiny newborn, and we had our very first exam under anesthesia - the one with two eye surgeons, who we'd come to know as two of the most important people in our lives - we have feared being in this situation.  That day they explained to us the ins and outs of Peter's Anomaly.  As fundamental as what a cornea, retina and iris even are.  How we'd be living on a roller coaster with this disorder all of our lives, and no matter how good things were going, they could change in an instant.  The different scenarios of how things could go.  What constitutes an "eye emergency."  Since that day, Avery has been through the gamut of surgeries - 8 cornea transplants, countless glaucoma and "maintenance" surgeries, and as of two weeks ago, approximately 112 times under anesthesia.  We've seen moments of pure despair and defeat, wondering if she would ever have functional vision.  We watched our community of other families with Peter's Anomaly kids go through the same things - and often, worse things.  We felt their pain, and prayed it would never be us.

In the back of the mind of any parent in our shoes is the possibility of retinal detachment.  It is particularly serious for kids with certain eye abnormalities and disorders, like Peter's Anomaly, because the structure of the eye isn't typical or healthy.  No working retina or optic nerve means no vision.  For the average person, retinal detachment is still a big deal, and should be treated immediately, but for Avery, it is one very small step away from permanent vision loss in that eye.  In our world, it's the most serious thing to happen as far as her eyes go.  Even though it was explained to us from Day One, and even though it's always in the back of our minds - the reason we teach her Braille, and we learn Braille, and we mentally prepare for transitioning to total blindness - it still hits you like a ton of bricks when it happens.  I never thought we'd deal with it so soon.

Three weeks ago, during one of our normal, daily patching sessions (which entails putting a blackout patch over Avery's good eye to make her use and strengthen her weaker (right) eye), I noticed she wasn't using that eye at all.  Since complications from her last cornea failure, and newest cornea defect in that eye, it's gotten extremely lazy, and therefore hard for her to use.  But that is why you patch - to remind the brain that it's there, and hopefully avoid a nasty muscle surgery.  She complains constantly when we patch, but she at least uses the eye.  But this day was worse than normal, so I started doing some of my "tests" to see what was going on.  I bring up pictures on her iPad of things she definitely knows: colors, cartoon characters, etc., to see if she's registering it in that eye.  She didn't get one right.  I tried again, silently panicking inside.  Nothing.  I frantically called John, who was ironically on his way to the Ophthalmologist's office anyway to pick up more patches for Avery.  He spoke to her doctor about what was going on, and they decided she needed to be seen under anesthesia that very week.  Now, I'll admit, I second-guessed myself...selfishly because we had a trip up north with our friends the next day that we'd been looking forward to for months.  But deep down, I knew something was definitely wrong.

It was on my mind all week, and even though we were able to escape for one day to be with our friends, I couldn't stop thinking about her and what could be going on.  The day of the exam, they had to do some other procedures on her defective cornea, but it still felt like it took forever.  In the waiting room there were, as always, plenty of distractions.  Especially the parents who I overheard discussing a port implant surgery for their daughter with cancer.  I tried to focus on that.  No matter what happens, it's not cancer.  But I was still scared as hell, praying that it was nothing and we wouldn't be taken into that "little room" where they take all the parents when something is not appropriate to be discussed in the waiting room.  Sure enough, our doctor came out, looked around, and suggested we go into the "little room."  I've been through six brain surgeries and 18 eye surgeries, and managed to stay out of that damn little room.  This was our more positive-outlook, optimistic, laid-back doctor, so when he told us that Avery's retina had partially detached - the news that we have dreaded like our worst-eye-nightmare for 5 years - it sounded less of a blow than it really was.  But our more negative-outlook, realistic doctor had his own spin on it, that more appropriately matched the panic that was going on in my mind.  Regardless of their outlooks, they both agreed it needed to be taken care of by a retina surgeon (who we have seen before for other posterior eye issues, thank God) IN ONE WEEK OR LESS.

Our sweet doctors were very sympathetic, as they saw me get emotional in public for the first time in almost five years.  They must have given the wake-up nurse a heads up, because she came in ready to comfort me.  This is one of the many nurses that we've known for five years, and the kind that put themselves in your shoes.  She told me how she always keeps her patient's stories in mind when things come up in her own life that seem bad or unfair.  She even cried with me.  Despite everything that went on that day, I knew we were in the best place.

Fast-forward to today, which is 12 days later.  We have not had the surgery yet.  It's tomorrow.  To say that I'm a ball of stress is an understatement.  Since we left the hospital that day, John and I started daily phone calls with all three doctor's offices, pleading to get in immediately for surgery.  But with our great luck, this emergency happened to fall during the most inconvenient week of the year for retina surgeons.  Of course.  The star doctor is one of the best in the country for Pediatric Retinal surgery, but that means not easy to get into.  He couldn't get Avery in until the 2nd, which would be 13 days from the original date we found it.  Unacceptable. Nope, not going to happen.  So, we went to his colleagues next - out of town.  "What about another hospital?" we asked next.  The only other option in Michigan isn't considered the best option for Avery's case, but even so, they too - OUT OF TOWN.  We'll go anywhere - Philadelphia, Duke.... I had my trusty band of Peter's moms online giving me recommendations for surgeons all over the country.  Our doctor understood our concerns, but felt it was the best decision to hang tight and wait for the 2nd.  We were put on a wait list for sooner, but we all know how that goes.  I still held out hope, every single minute that passed, hoping they would call and get her in sooner.  But here I sit, on September 1st, in no better a spot than I was last week.

Fortunately, Avery doesn't show any signs of pain or discomfort.  This helps immensely with our sanity.  If this were a brain issue, we'd be far worse off.  But we know the possibilities and outcomes of this impacting her future.  We know that if it's gotten worse over the last few weeks or they cannot somehow fix it, that Avery's right eye is as good as done.  There's really no coming back from a retinal detachment that isn't fully repaired.  Even if they do repair it, our future is now even more difficult than it already was.  We don't have a "good" eye to rely on as a back-up.  Her left eye is a tad stronger, but it too can go at any minute.  Her vision in that eye is poor - functional, but poor.  Believe me, I've seen it all, and heard all the stories and I know that we should consider ourselves lucky to have any vision at all, but that doesn't change the pain of thinking that your child's vision, which you've worked so, so hard for, is slipping through your fingers.  Even though she hasn't missed a beat these last few weeks, I know that she could suffer for the rest of her life because of this whole nasty complication.

This post has been negative, and although I try to keep a positive perspective, it's not realistic to keep that 24/7.  I thought my next blog post would be about Avery starting Kindergarten next week, because, oh yeah - that is supposed to happen.  I was just starting to wrap my head around that craziness when this retina monster came in and bulldozed over everything.  The best case scenario is that it didn't get worse, and this surgeon can repair it.  We'll still have to add it to our list of things to watch, but hopefully her vision can be restored.  And we can enjoy our fun plans for Labor Day weekend, and send her off on her first day of Kindergarten next week.  Yikes.  As always, we rely on your positive thoughts and prayers, so thank you for those.  We have definitely been through worse, but not with her eyes, so we are sad and scared going into tomorrow.  I don't think we've ever had to wait this long for a surgery that we had so much riding on it.  Please think of Avery tomorrow, and please hope and pray for the best.  Thank you,
Ann



Sunday, April 12, 2015

Five

Every year around Avery's birthday, like most parents, I get extremely sappy and emotional.  This one has been especially hard for me, and I'm not sure why.  In so many ways, Avery is doing so well.  We are facing a new cornea transplant soon, but her general health is stable and she's such a wonderful, happy kid.  She's even saying she's five when you ask her - which is a big deal in itself.  Five just seems to be the age when you can no longer call them a baby.  3...definite baby.  4...still a wee-one.  5...kid.  I can't live in denial any more - the sun is going to rise tomorrow and it's going to be April 13th, no matter how hard I fight it.  It's only appropriate to keep my tradition of birthday entries going, and reflect on and celebrate my baby (waahhh!!) turning five.

Five years ago tonight, I was getting ready for my last child-less night's sleep.  My last night before my world completely changed.  I knew it was about to change, but I had no idea how.  On that night, I had known for two long, excruciatingly scary weeks that my worst fears had come true.  Our unborn daughter had something foreign in her brain, and no doctor could be totally sure of what it was.  For those two weeks between "finding out" and going in for the c-section, I struggled to finish the last-minute things I had planned on doing before our daughter arrived.  I had baby clothes needing to be put in her drawers, and decorations that needed to be hung on her walls.  But I couldn't bring myself to step foot into her room for fear that I'd never get to bring her home to live in it.  I could only think of the worst case scenario at that point, and I vacillated between anxiousness and dread for her birth day.

Until that point, my life experiences were pretty regular.  I hadn't lived through anything extremely traumatic, and my mental and physical limits hadn't truly been tested.  I may have thought they were - the first broken heart, the last broken heart, the struggle with career decisions, or buying and renovating our first home.  But nothing serious or earth-shattering.  I wouldn't have considered myself to be a strong person, a courageous person, or a jaded person.  Before her arrival, I complained about trivial things, and didn't know what was really important in life.  I'm sure I neglected to pay enough attention to those who were less fortunate than I, and although I felt sorry for parents who had complicated pregnancies or babies with medical issues, I probably thought, "that won't be us."  And I am glad for my naivety.  We don't have crystal balls for a reason.  Had I known that in 5 years time, we'd be going into our 22nd surgery, our 105th anesthesia, our fifth year of physical, occupational, speech, and vision therapy, and our daughter would be about to start a special needs kindergarden, I'd probably have jumped out the hospital window.  That would've been too much to take.  And looking back, it was still too much to take, but we did it, one day at a time.  We have our love for her in the forefront of our minds as we go through each painful motion and decision.  We are doing what any good parent would do.

Avery coming into the world changed everything - and I can confidently say, for the better.  She not only makes the world better by being in it, she made me a mom, and a better person.  I am no longer weak (well, sometimes I am), or naive, and that's a good thing.  We've seen scarier, more painful things in our lives than we ever imagined we'd see, but despite it all, we have an extremely happy, bright, loving little girl, and I'm so proud of her. She has taught me so much, and definitely leaves a lasting impression on so many who meet her.  I'm forever grateful to her for opening my eyes to what is truly important in life.

Five years ago, I wasn't sure that she would even get to come home from the hospital with us, and I look at her now and am amazed every single day.  She has surpassed so many expectations that both we and the doctors had five years ago, and I know that will continue.  I still worry every day.  It's impossible not to.  There are days when I can't catch my breath because I'm so scared of what's to come, but I have learned that we can take whatever it is.  Every night, Avery ends her prayers with, "thank you for all that you've given us and for how far we've come," because despite how difficult life has been, we really have overcome so much in these 5 years.  If someone could've told me on this night five years ago that on the weekend before her fifth birthday, Avery would be bowling for the first time, singing Disney songs for her family, and cracking us all up, I would've slept soundly that night.  But I had to go through it all to find out, and I am just as happy with that.

Happy Birthday to my favorite 5 year old - you will always be my baby... xoxo

Wednesday, February 11, 2015

A bad week

I'm usually pretty okay when it comes to our life and situation with Avery's health issues.  I've reached a point of acceptance, and my skin has thickened to the world around me.  It usually takes a series of blows to that ego - a few days of bad news, coupled by a half-dozen doctors appointments, or being on the tails of a hospital stay - to bring me down a few notches.  One day, I feel like I've got it all together as a special needs parent.  I'm giving advice, left and right to new moms of special needs kids, I'm signing up to volunteer for various events related to Avery's disorders, and I'm on top of every item on our "Avery Checklist" (IEP goals, doctors appointments, google-searching new ways to help her).  The next day, my seemingly tough foundation begins to crack as I start to hear more and more bad news, and before I realize it, I'm thinking, "if one more person stares at my kid walking with her cane, I'll start crying right here, in the parking lot of the doctor's office."  (Not that this has ever happened....)

The start of 2015 has been pretty rocky, and it's been especially difficult to deal with being that we came off of such a happy, healthy 2014.  Avery's first seizure one month ago, and the fact that we could have lost her from the effects to her body, was enough to shake us up for awhile, and it left us with an opened can of worms.  There's a whole new set of specialists to see, tests to do and so many more questions to ask.  If dragging your child through those things isn't enough, there's also the issue of making sure your insurance will cover it, and kicking yourself for not increasing the amount in our Flex Spending account.  I say it every time we're in a busy spike - this is a full-time job.  Recently, I decided to go back to work, mostly since things with Avery had been so stable.  I took on a part-time job recently, and for the most part, it has been a really positive thing, but is now also an added stress amidst all of the extra stuff going on.  Not to mention John and I are trying to learn Braille - one of the hardest things we've ever tried to learn.  This is going to be how our life goes; never knowing when Avery's issues will pop up, so living our lives can't be put on hold forever, even though it's difficult to juggle everything.

This week has just sucked - no other way to put it.  We continued our tour of new specialists - the Neurologist and Endocrinologist were scheduled, as well as her normal weekly speech appointment.  I also started working 2 days (rather than every night), so my parents started helping out two days a week.  Yesterday, the Neurologist reviewed the EEG results with us, further explaining that Avery has seizure activity, which is why she's now on seizure meds, as well as a general slow-moving brain activity.  We know she is developmentally delayed, and this is the cause of it, but it's hard to hear.  She rattled off a bunch of "next steps," and I guess I wasn't prepared for them.  She suggests Avery do a longer EEG test to gauge the frequency of her seizure activity, as well as see a Doctor of Behavioral Medicine/Psychotherapist, who can evaluate any social/emotional issues going on, and help us with Avery's development.  In this discussion, the Neurologist asked us if Avery's been tested for Autism.  The thought has run through my mind many times, and I've brought it up to every other specialist she sees, and even though none of them think she is Autistic, the worry still lingers.  So to have a new doctor bring it up was a kick to my stomach.  It put it right back on my radar, and I was hoping it was one of my crazy fears that stays in the back of my mind.  She wasn't saying Avery is Autistic, but the very mention of testing for another diagnosis makes me sick.  I left that appointment feeling very defeated, which I haven't felt in a long time.  We've dealt with the devastation of not only life-threatening issues, but the fact that our child struggles on a daily basis to do very basic life functions.  Every possible effect of her health that has once been just a topic of discussion, has seemed to come true eventually.  Once upon a time, things like shunts, revisions, and seizures were just talked about as possibilities.  Then, one by one, all of those things have invaded our world.  So, forgive me if it's hard to believe that yet another diagnosis won't rear its ugly head.

If that wasn't enough for yesterday, John also found something in Avery's eye while putting her drops in.  It appeared to be blood near the valve that controls the fluid in her eye.  I took her in first thing to have it checked, and her ophthalmologist decided he needs to do an EUA tomorrow morning to get a better look.  When it rains, it pours.  It can never just be one issue at a time, unfortunately.  We always hope it's nothing serious, but the very stress of handling it is hard in itself.

This blog is here so I can vent my worries and frustrations and remain a strong, steady rock for my daughter.  I can let myself break down when John is here to take over for me, but at Avery's age, there's no crumbling in front of her allowed.  I did start to tear up yesterday after the fifth person that day stared at Avery walking along with her cane.  Even if it's a look of sympathy, I don't want her to be on the receiving end of that kind of attention.  But, like always, we will keep moving forward, take it a day at a time, and deal with what we are given.  No part of this life is easy, but we have the most beautiful, wonderful daughter in the world relying on us to help her through it, and I will continue to make that my number one priority.