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

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

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.

Sometimes reality bites

There have been so many unpleasant realities hitting us lately, and it's just a constant reminder that although Avery has been physically healthy for over a year now, the day-to-day continues to challenge us.  Very sweet people often tell me, "I don't know how you do this, I'd be a wreck."  But it's just something that we do, without thinking, because we love our daughter and this is the set of circumstances we have.  It's when I do think about it, on sleepless nights, or during moments in the doctor's office, that it gets hard to bear.  Being hit with many realities in a short time, and having time to "think" is trouble, so I often try to focus on the current day, keep moving forward and not get sucked into the trap of thinking of the "what-if's" and the "what-that-other-kid-is-doing."  Comparison is my mind's worst enemy, and truly one of the biggest no-no's of being a parent.  But we all do it.

We had Avery's annual IEP (individualized education plan) meeting at school a few weeks ago, and if you haven't had the pleasure of participating in one of these, let me tell you, they are quite overwhelming.  A team of your child's teachers and therapists, which in Avery's case, consists of around 8 people, get together to discuss their progress, shortcomings and goals.  We are so lucky to have an exceptional team helping Avery.  So exceptional, that I'm already in tears thinking of the day we have to leave Addams ECSE.  But it doesn't matter how wonderful the team is, it is never easy to hear some of the things they have to say.  Avery has come so far since last year at this time, but her struggles are ongoing and these meetings remind me that every single day counts in helping her progress.  I'm going to break the parenting rules for a minute and "compare" my child to another child.  I've been around many four-year-olds, and Avery is nowhere near their level in terms of comprehension, social skills and communication.  I'm not saying this because I'm disappointed in her, I'm saying it because it's a reality, and one that many people often do not see outright because Avery isn't always obviously "different-looking."  But in most ways, she operates at the same level as a two-year-old.  And while we can remind ourselves daily that this is a blessing, and Avery could be in a much worse place, it's still difficult to see a typical 4-year-old girl, speaking to her mom in complex sentences, understanding concepts with no problem, playing house with her friends, and knowing that my 4-year-old cannot do these things yet.  Once your child is in a group of their peers at school, it's almost impossible not to measure their progress against the next kid.  For example, in addition to the IEP meeting, we were asked several questions and given forms to fill out about Avery.  Here are some of the questions:

"Can your child jump over a number of objects in their path without stopping?"  No.

"Does your child take off their shirt/shoes/pants without help?"  No.

"Does your child look for a toy that is covered at least 2 feet away?"  No.

"Does your child show awareness of how others feel by saying things like "he is mad," "you are cranky"?  No.

"Does your child like to play alongside other children instead of playing alone?"  No.

"When an adult points to something, does your child look where the adult pointed?"  No.

And on and on... We answered, "no" more than "yes."  It broke my heart.  I realize this is a rigid set of questions to evaluate the typical development of a child, but I also see that Lucy is on track for all the questions in her range and even a little beyond.  The things that Avery deals with physically have incurred serious delays in comprehension, motor skills and social-emotional progress.  And it's so much more apparent and in-our-faces now that Lucy is growing and doing things with no effort.  It is definitely okay that Avery is taking longer to learn and do things, and okay that we have to put forth more effort to help her, but every so often, we stop and think about this reality and get a little sad.  And that's okay too.  So often we hear, "she's doing so well," and that makes us feel great, but many people don't see how difficult and different it really is.  There are constant therapies, doctor visits and work at home going into her progress.  Avery still needs assistance on basically every task that she completes throughout the day: dressing, going to the potty, walking down the stairs, using a spoon and fork, putting on her shoes, finding toys that she wants, and communicating her needs.  And I know a lot of 4-year-olds who do all of those things on their own.  It doesn't bother me until I hear about it, or am forced to evaluate her current level.  And I'm working on not letting that bother me, but it's easier said than done.

The other big reality bothering me lately is one that's difficult to explain.  When people comment on Lucy's gorgeous, big eyes, I am proud and grateful, but I'm also very, very sad.  Avery will never have typically "beautiful" eyes.  She has eyes that we treasure, love and think are beautiful because they are hers (and we know what they've been through), but to the stranger on the street, or to a boy that she has a crush on someday, they may not be considered "beautiful."  And someday, she's going to hear her sister get compliments and feel that sadness that we feel for her now.  (Side note:  please never feel bad to compliment Lucy's eyes - that is not my intention!)
Similarly, when we're out running errands, and a stranger asks how old she is, and then asks her questions like, "what are you being for Halloween?" and she just stares off into space, it's hard to have to explain why.  The expectation is that she would answer a simple question like that.  I'm just happy she can answer, "how are you?"  And the newest button for me, is the constant comments about her small size.  When she was younger, it wasn't so hard, but at 4.5, it seems much more apparent.  The people in our close circle - family, friends, Avery's doctors and teachers, all know why Avery is small, and their talking about it is never malicious.  But from everyone else, this is a sensitive subject.  I think I can speak for every parent, special needs or not, when I say that no one wants to hear the comment; "she's so small!!"  You wouldn't tell someone that their child is "so fat," so why would you tell them the opposite?  I'm not the type of mom to stop and explain to a total stranger why Avery is so small, so I just have to grit my teeth, say, "yep, she is!" and walk away.  All.the.time.  Then there's the super fun comments (which usually come from older men in Meijer); "you should start feeding that kid more!"  How many times have I wanted to go off on someone in the check-out lane?  Too many to count.  
We're not totally sure of the cause of Avery's small size, but are confident it's related to her medical issues.  People born with Peter's Anomaly are often short statured, so that's a possibility.  She also didn't eat properly for the first four months of her life, which is a critical time for gaining weight, so that could carry on for the rest of her life.  Regardless, we're on it.  We're having her tested for all kinds of things, which included having her poked and 6 tubes of blood drawn, and exposed to yet another x-ray to find out her bone age.  We put these off as long as possible, but don't see the issue getting better, and need to rule out something serious.  She eats very well, and (knock on wood), hasn't been sick this year, so we know she's healthy overall.  So to that stranger on the street who wants to point out the obvious and tell me my daughter is "so tiny," please replace that with "so cute."  I know you don't mean harm, but that comment hurts.

Regardless of what others say, and what other kids are doing, our day-to-day work will continue, and I will continue to work on my strength as her mom.  Because she needs me to be her rock, and to teach her to take everyone's comments in stride.  We are working hard on Avery's tolerance of tasks that she doesn't like to do, like dressing herself, using her fork, coloring with crayons, etc. because we know she can do anything with a lot of practice.  The potty training is progressing, slowly, but surely.  There are good and bad days, but we're leaps and bounds from the summer in that department.  We are teaching her so much that I often want to give her breaks, and do things for her, which is okay once and awhile, but not as often as I have been.  It's hard to see your child struggle with anything, even something as simple as using a fork, but I am learning that some struggling is good.  I'm also learning patience.  A quality that I've never been good at, but a critical one to have.  We recently relived Avery's journey for our interview with Children's Hospital (that special is airing on WDIV-4 in Detroit immediately following the Thanksgiving Day parade, and I will share online after as well).  It is hard to resurface the pain of events we have endured, but it's a reminder of what we've learned and how far we've come.  I was a fragile, sensitive, thin-skinned mom four years ago, but now, I'm much tougher and more experienced, but I'll never be immune to all of the pain.
As always, we appreciate everyone's thoughts, prayers and support.  Especially the support of the other special needs parents who walk in our shoes and cry the same tears.  We cannot do this without you!

Auntie Kathy

One thing that we've been sure of throughout our journey with Avery is that we have an amazing support system of family and friends helping us through it.  We are so grateful for this and never take it for granted.

About two weeks ago, we got a phone call from one of our biggest supporters, John's sister, Kathy, that completely took us by surprise.  She was calling to tell us that she has breast cancer.  I still can't believe it, and every time we've talked since then, I'm thinking the whole time, "are we really having this conversation?!"  Hearing Kathy say things like "chemo," and "mastectomy" are too bizarre a concept, and after all I've been through in my own life, I didn't think anything could shock me, but was wrong.  You truly never think cancer will strike in your own family, but then it does, and it turns everything upside down.  The real shock was the timing of this awful news.  Exactly one month before her wedding day.  I can't help but think (as I know she is), "it's just not fair."  I know these words ran through my head many a time, so I expect she's thinking them too, as she's entitled to.  There is never a good time to find out you have cancer, but Kathy has waited a long time to meet her Prince Charming, and has spent this whole year planning a beautiful event to celebrate it, so being blindsided with this news RIGHT NOW really sucks.  Thoughts of seating charts, wedding hair and make-up have shifted to thoughts of surgery and scars and cancer treatment.  These should be the happiest days of her life, and I'm sorry that some of that joy has been taken from her, as she inevitably is scared for what's ahead of her.  She's walked the Komen 3-Day for six years, raising money and awareness for a cancer she never imagined she'd one day get.  It really isn't fair.  But in giving it more thought, I realize she now has a support system from all those walks, and she has the love and support of her fiancé to get her through this, and no matter when she found it out, it would still really suck.  While my heart breaks for her and what I can only imagine she's feeling, I know she will face this bravely and beat cancer's butt!
 
Kathy is no stranger to devastating health news being in our family - her dad has been through several surgeries and health scares, and of course she's been by our side with Avery's issues.  But this is her first personal battle, and she knows it's not going to be easy.  We, her family, will be behind her all the way, just as she's been for us.  I've been lucky enough to get very close with Kathy over the years; she's someone I confide in, and visa versa, she was in my wedding, as I will be in hers.  We have been with each other through many big events, both happy and sad, and like every good family, we support each other.  

This news has me reflecting back to our early days with Avery, and how Kathy was there for so many of the big, awful, scary moments.  She was there for Avery's first surgery to remove her brain cyst at 5 weeks old.  Kathy came up with my in-laws and she sat with us in that waiting room and distracted me with any and every subject that wasn't brain surgery.  She was there the day our pediatrician told me to take Avery into the ER for a spinal tap for meningitis.  She had literally just arrived at our door step to help us out for a few days, and we left her with our dog while we took Avery to the hospital.  And I will never forget that she was the only person in the room with me, giving me a hug when I asked the doctor if Avery would pull through that infection, and he said, "I don't know."  Since those early days, she's been one of our biggest supporters, spreading awareness about Avery's disorders and helping us with fundraising for Hydrocephalus Association.  If she can't be here in person, she sends encouraging notes and texts, and always checks in on updates.  If you are ever in a bad situation, no matter how little or well Kathy knows you, she will be there for you.  She's just that kind of person.  She's always been one of the most thoughtful, generous and caring people I have known, and I know that she will see that all come back to her now that she is the one who needs it.
So this entry is to let her know how much she is loved, appreciated and thought of.  Her support over the years has not gone unnoticed, and although it's sad that it takes news like this to really bring to light how much we appreciate someone, it's a good reminder to cherish our loved ones.  We are so sorry that you have to battle breast cancer, and although we're not sure what your journey will be like, we are sure of the fact that we are here to support you through it.  We will be sending out prayers and happy thoughts as you begin your battle tomorrow, and we will be celebrating huge with you in 18 days when you get married!  We love you, Kathy/Auntie Kathy!!
If you would like to follow Kathy's battle with breast cancer, please visit her page at: www.caringbridge.org/visit/kathysfight3

One Year Shunt Anniversary!

We have been lucky enough to celebrate a lot of milestones in 2014 - both of Avery's corneas turned 1 year and she finally started talking.  But today marks the most important milestone to date - her shunt was last revised one year ago today.  In our little world of Hydrocephalus, that's a really big deal.  Avery's shunt malfunctioned twice last year, the first one with many months of sickness leading up to it, and the second time was just shy of 3 months from the first revision.  Each time her shunt malfunctions (which means it either plugs up with scar tissue or brain matter, or the valve stops working for some other reason), she gets extremely lethargic, vomits and has a massive headache.  This last happened on August 13, 2013, and I got a call from John while I was at work.  That was also my last day of work, because I had decided on top of everything else going on at the time, I wasn't about to be absent for another shunt malfunction.  It's treated as an emergency when kids with shunts show these symptoms, as pressure from accumulating fluid can cause major damage to the brain, and if left too long, can be permanent or even worse.  Avery was so bad last year, that in pre-op, she was basically unresponsive to any physical test.  It was terrifying to watch and we were on the edge of our seats waiting for surgery to finally happen the next morning to provide some relief.  The other issue with shunt revision surgery is that it's brain surgery.  There's no short-cut or way around that.  The chance for infection is pretty high, especially in warm summer months, and even if the surgery is successful and you are discharged after a few days, the worry of an infection will haunt you for months (or a year, if you're me).  There's an initial hurdle to overcome, which is the shunt making it for three months after it's revised.  Statistically, the shunt is most likely to fail again in the first three months, but a failure can happen at any time.  So basically, not one single day goes by when we don't worry that this could happen.  Believe me, I'm ecstatic that we've reached such a long milestone, especially based on how last year was going, but the worry is constant and never-ending.  We still keep a video monitor on Avery's bed and any sign of a cough or weird noise, I'm stiff as a board, holding my breath, hoping it's just nothing.  That terrifying sound of your child with hydro vomiting in the middle of the night or first thing in the morning will never leave your memory, and every one of us knows things can turn on a dime.

I was so skeptical that this shunt would last past the three month mark, let alone a whole year.  And that's not me being negative, it's because my kid scares me so many times.  If you know us (or read this blog), you may recall the persistent stomach-bug masquerading as a shunt malfunction she had from September to October of last fall.  It got me each and every time she woke up puking in her bed.  "This is it, this time it's her shunt, I just know it..." and then it wasn't, thank God.  I kept praying for her to stay healthy just until we brought Lucy home from the hospital, and then I upped it to when Lucy's sleeping through the night... and then it just kept going.  Then there's the changes in weather affecting her shunt.  If there's an extreme change in barometric pressure, she sometimes gets bad headaches, which make her feel awful.  We have watched her go through this for so long, we're pretty in tune to her mannerisms and signs that something's going on.  She still doesn't understand how to tell us that she has a headache, so we're really looking forward to when she's able to communicate better.

Avery missed so many days of school in the Winter and Spring of 2013, and this past school year, she hardly missed any.  It's absolutely amazing what she was able to achieve without the effects of pressure on her brain or surgeries.  She came so far this past year, and even if everything changes tomorrow, I am grateful for the progress she's been able to fit into this year.  We've met a lot of other Hydro families via social media or local support groups, and we know that not everyone is fortunate enough to make this milestone.  It's a scary, awful disorder and the very reason we fund raise for Hydrocephalus Association is to push for research towards better treatment.  I pray that in Avery's lifetime, she won't have to forever rely solely on her delicate shunt to keep her healthy.

So today is like another birthday for my girl - Happy Shunt Anniversary... ice cream for everyone!

Paying it forward

The way we see some silver lining in an otherwise crappy situation is to look for opportunities to help others.  Whether they are going through what we have with Avery, or have a child with other special needs, we hope that by sharing our story, being someone to lean on, and getting information out there, we can help others get through terrible times.  Hearing from another mom that I've made her feel better, or that we brought something to their attention that they wouldn't have otherwise known, gets me through and makes me feel like we're giving back after receiving so much help from others.

Recently, Children's Hospital of Michigan, where Avery receives the majority of her care, contacted us after reading a "thank you" post I had put on their facebook page.  They wanted to share Avery's story on their website so other families searching online may stumble on it and take something away from it.  Of course, I jump at any chance to show off Avery's smiling face, but am so happy to do anything we can that may help other families.  The article also serves as a public thank you to our amazing doctors; Dr. John Roarty, Dr. Steven Dunn, and Dr. Sandeep Sood, as well as the nursing staff at CHM.  They've become part of our family, and have brought Avery to where she is today.

http://www.childrensdmc.org/AveryDevereux

Honestly, it is only recently that I feel confident enough to serve as a dedicated resource to other families regarding these medical conditions, and being a parent of a special needs child.  The first 6 months of Avery's life, I was pretty much a recluse - afraid to go online and read something that would scare me, afraid to spend time with others, whose children I compared to Avery, and afraid to answer to the stares and questions of others.  Then I progressed into the "anger phase," when I wanted someone, anyone to blame for what was happening to my baby.  I turned my back on God, and felt some resentment toward everyone who had a healthy child.  Each time one of Avery's conditions landed us all in the hospital, I would become this numb person, so helpless and confused.  When things are good for awhile, it's easier to reflect on what you've truly accomplished, and focus on how you can make your mess your message.  This past year, Avery's conditions have been stable for the most part, but there is still a daily worry as I watch her struggle to learn things, to communicate, use her limited sight, and keep up with her peers.  Despite this, I've really improved my ability to take one day at a time, and not to think too far into the future about the "what-if's."  That has allowed me to reach out to many families just starting the journey, and try to do what I can to help.  Because not long ago I was in their shoes, and someday, we will be back in a not-so-great place.  It's just a fact of this life, and acceptance is the key to getting through it.  It won't be easy, and I'm sure I will still be upset and angry, but I will take it as it comes and make sure Avery knows that first and foremost, she is loved.

Although Avery's conditions are a daily battle, we are in a good place today, and if we are not tomorrow, we have an amazing team at CHM to rely on.  I call ours a success story in that we weathered many, many storms as a family, remain strong, and have a very happy little girl to show for it.  Avery will never let her medical issues hold her back, and we will encourage her to do whatever she wants to do, and to push her limits.