tag:blogger.com,1999:blog-66689291934204395222024-03-05T16:27:57.413-08:00Avery's LightAnn Devereuxhttp://www.blogger.com/profile/10086881781904871494noreply@blogger.comBlogger32125tag:blogger.com,1999:blog-6668929193420439522.post-2500623352185293922018-01-16T17:03:00.001-08:002018-01-16T17:06:32.896-08:00Scary January<div>
<span style="font-family: "times" , "times new roman" , serif;"><span style="font-family: inherit;"><span style="font-family: Arial, Helvetica, sans-serif;">January is a difficult month for me. Reviewing our "health track record," it's unfortunately our most unlucky month, and for the last few years, I can feel myself get tense the days leading up to the new year, lasting through Scary January. It's a reminder of all the scary times we have lived through in Januarys-past. And by scary, I mean the worst possible scenario that any parent can face. We have come too close to losing Avery more times than should be possible, and many of those times fell during this month. To anyone else, it may seem like time would heal these fears. But as her mother, and at times the only eye-witness to many of these past events, I think I'll be forever haunted during this time. (Not to mention all the times in between.) <span style="background-color: transparent; color: black; display: inline; float: none; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="background-color: transparent; color: black; display: inline; float: none; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">Three years ago today, on January 16, 2015, I was thanking God for letting me bring Avery home. I found her seizing and unresponsive in her bed, and after a scary ride to the ER, they found that her blood sugar was at a critical 17. You never forget a doctor telling you what would have been if you didn't find her when you did. That scary day also began our journey with epilepsy, which has by far been the most complicated and difficult of Avery's diagnosis. The very next January (2016), we were rushing Avery to the ER yet again for status epilepticus, which as you know would end up to be her longest and most complex hospital stay to date. The effects of that time are with her to this day, and although she has been fighting like a champ, the struggles are constant. And one of those struggles is my own. It involves getting through this time of year without totally losing my mind.</span></span></span></span></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">It obviously helps that we have been incredibly fortunate over the past year, as well as now, in the midst of one of the worst reported flu seasons. (I type this as I fervently knock on wood.) But when you live life like we do, you are always waiting for the other shoe to drop. You are peeking your head out from under the covers, waiting for the monster to jump out and grab you. And there are a few monsters. Even though Avery has been doing so well, and we haven't made a trip to the hospital in almost six months, that doesn't mean there is less fear. Because we know that it's inevitable. She is going to catch something again, she is going to have another medical issue. So the question isn't 'if,' it's 'when.' And that has been a heavy burden to bear at any time, but even more so when you are reminiscing this unlucky time in years past. Do not mistake this for negative thinking or hopelessness. This is realistic; albeit, enhanced by anxiety and a little PTSD in January, but realistic. While I am grateful for every single healthy day that Avery lives, and I love nothing more than witnessing her grow, learn and progress as much as she has each day since her last major issue, I know that there will be another monster, and it's impossible to ignore that.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">What I am continuing to work on each day is living with these fears, while not letting them take over. I know they do more often than I'd like, but I also know that in many instances, they are warranted. Like the aforementioned flu season. I am terrified to leave the house during seasons like this, because as most of you know, if Avery catches the flu, we are almost certain to be heading to the hospital. But I see how well she does when she spends time at school, and doing the things she loves outside of our bubble at home, so my intuition tells me to let her go. I rely on that intuition, and her support at school to keep her as safe as possible. Oh, and Clorox and Purell... I rely on them A LOT. I should buy stock in those. The flu is a unfortunate part of life that is made scarier by having complex medical issues. We know that it is impossible to completely avoid, but we do everything we can to reduce our risk. So never be offended if I decline an invitation during flu season, or if I'm constantly wiping the kids with anti-bacterial wipes. It's necessary, and ensures our germs stay contained as well. </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">Back to Avery doing so well... She really is. I often pinch myself because it's incredible to look back at where she was three years ago and two years ago to where she is now. Talk about proving everyone wrong. I am hopeful for her future, but vigilant and realistic. I always strive to take one day at a time, because we know that looking too far ahead is more overwhelming than beneficial. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">Everyone stay safe, stay healthy, and if you're sick, please try to stay home <3</span><br />
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<i><span style="font-family: Arial, Helvetica, sans-serif;">January 2016, on a rare alert moment between fighting constant seizures</span></i></div>
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Ann Devereuxhttp://www.blogger.com/profile/10086881781904871494noreply@blogger.com0tag:blogger.com,1999:blog-6668929193420439522.post-20102642155779183342017-03-23T20:11:00.001-07:002017-03-23T20:11:48.835-07:00PerspectiveAfter what has seemed like the busiest month ever (although I feel like I say that almost every month), our day today made all the chaos stop for a moment and things just went right. And that gives me the space to step back, evaluate the path we're on, and regain the perspective that I often lose along the way. When I compare this year with where we were at this point last year, it's a no-brainer that we're in a completely better place. I wish I could go back and tell myself back then where we would be today. I would have probably slept a little more. But knowing that you're in a better place compared to your last major struggle doesn't mean that you still aren't struggling. Avery not being in the hospital is our ideal scenario, but even if she's home, her day-to-day life poses a huge list of challenges that often make me feel like I'm drowning. She has been doing really well and we have mainly been managing the typical responsibilities that come with her medical issues, and some occasional hiccups. But over the last five weeks, our life has been kicked into high gear once again with back-to-back doctor appointments and new issues to manage. When you throw this into "regular" life stuff, like work and commitments already made, etc., it's not easy to say the least. It seems like if we get out of the habit of being on the hamster wheel for even a few months, it's that much harder to get back on it.<br />
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Avery is currently being evaluated for some behavioral and development issues that we and her teachers are noticing. It's nothing that comes as a surprise, but her CP and developmental delays, coupled with the damage that epilepsy - and the drugs she takes - are starting to pull her back farther from her chronological age. Again, nothing really new, but hearing that your child is severely delayed in several areas is no picnic. In addition, the physical repercussions of being in a hospital bed for six weeks, including a coma are still ever-present and she has been showing signs of weakness in her legs, and some other issues. That specialist would like her to get into intensive PT and OT as well as wear some braces on her feet, so she was fitted for those this week. They will not be the kind that go up her leg, so that's a little easier. Lastly, her routine bloodwork she gets while on the ketogenic diet came back with some numbers that weren't great. Expected for a kid on the diet, but still crappy to see on paper. We had to add a few supplements and adjust her foods a bit, and we are hoping that helps bring the numbers into a normal range again. The diet is the main reason her epilepsy has been controlled, so we need to stay on it while we attempt to wean at least one (hopefully more) of the medications she is on. The fact that we give our kid seven drugs and five supplements every day is overwhelming - in terms of principle, time, and money, to be honest. But at the moment, they are a necessity. So, while none of these issues comes close to being the worst we've been through, the fact that they all came at once (coupled with parenting a particularly strong-willed three-year-old and a special needs child who is also challenging us behaviorally) has rattled me.<br />
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Today, though, was a good day. Avery had her first session with outpatient PT after being on hiatus for six months. We were lucky enough that her former school PT now works at a facility that does pediatric PT/OT, and it's FIVE MINUTES from our house. Major score. She is amazing and Avery took to her, and her exercises very well today. Her typical reaction to PT is crying, so anything was progress, but how she did today far exceeded my hopes. So that boosted my mood ten-fold.<br />
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We also got the chance to meet up with a family who we know through one of my vision impairment support groups. It's an amazing mom who started an awesome resource/support page for parents of VI kiddos, and she's an advocate not only for her daughter, Cailee, who has a rare condition called FEVR, but an advocate for our community as a whole. She, her mom, and Cailee came to Michigan to meet with the same retinal specialist we see, because he's one of the top in the world. She arranged for us to take a tour of Leader Dogs for the Blind (also based near us in Rochester Hills), and meet a few other families with kids who are visually-impaired. The tour was so informative, but getting the chance to hug a fellow VI mom who has walked in my shoes is so rare, and so valuable to me. We have spoken for awhile via Facebook, but nothing compares to meeting face to face, talking about your kids, and knowing the other person totally gets it. She is seriously such a cool person, and Cailee is one of the coolest six-year-olds (besides my own!) I have ever met. A kid who lives with the burden of deteriorating vision, yet you'd never know it by being with her. One tough cookie she is. A group of us met up later with our kids, and Avery had hit her limit by that point, so I brought Lucy in her place (who had the time of her life and fell in love with Cailee) and it was so nice to bond with a group of moms who can understand where I'm coming from. Makes me even more motivated to make a meeting happen with the rest of my VI mom friends :)<br />
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So I regained some perspective today that I had lost over the last month. Life is hard, and there will be varying degrees of 'hard' with each passing day, but every so often, you get good times too. These break up the chaos and allow you to recharge your batteries. Because, boy did I need that.<br />
And one thing that sticks out in my head from the day was something the woman who led our tour at Leader Dogs said. Her teenage daughter volunteers with blind kids and works some camps that LD puts on. She was talking with one of the blind teenage girls about the things she wishes she could experience if she had sight. She explained that she can't just grab her car keys and go wherever, and she had to rely on someone to help her with a lot of simple tasks. The woman said this really struck a chord in her daughter; the thought of this blind girl desiring something that we take for granted. She decided to get the word "perspective" tattooed in Braille, on the arm that she leads with (helping along a blind person). The woman told us this story because she noticed my tattoo in Braille that says "persevere." I was so touched that kids like mine can affect people so deeply, and how many people exist in the world that have a passion for helping others. And being one of those people is my goal every day.<br />
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<br />Ann Devereuxhttp://www.blogger.com/profile/10086881781904871494noreply@blogger.com0tag:blogger.com,1999:blog-6668929193420439522.post-76768923088891590302016-10-30T12:53:00.002-07:002016-11-01T05:45:18.627-07:00Meet Seedlings!<span style="font-family: "georgia" , "times new roman" , serif;">When Avery was about five months old, and we were just dipping our feet into the world of VI parenting, our TVI (teacher of the visually-impaired) suggested we visit the Children's Low Vision Resource Center in our area. I will never forget that day, because it was one of the first doses of reality I received with regard to having a visually-impaired child and how different parenting would be for us. I was still getting used to the fact that Avery was "different," and this place was overwhelming, scary and the day was extremely emotional. However, it was the first time I realized continuing to be afraid of the life we were facing was just going to inhibit us from pushing Avery to her fullest. We had been slowly learning about VI services up until then, but there were so many more resources, services and tools available to her, even as an infant. All of these were things that would help her to be safe, functional and independent in this big, sighted world. My eyes were opened (pun intended) big time that day. While I was in tears for most of the visit, it definitely hit me that this is reality, and if I want to give Avery every opportunity that I can, this was the first step.</span><br>
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<span style="font-family: "georgia" , "times new roman" , serif;">On our way out, the director of the center gave us a care package--some DVDs, a lot of pamphlets, ways to connect with other families, and even a VI/Blind "goody bag," with the phrase, "Hooray for Braille!" on it, and knowing me, I'm sure I sarcastically was thinking, 'yay - welcome to the party!' The bag was from a place called </span><a href="http://seedlings.org/index.php" target="_blank"><span style="font-family: "georgia" , "times new roman" , serif;">Seedlings</span></a><span style="font-family: "georgia" , "times new roman" , serif;">. To be honest, I didn't pay too much attention to the source of the goodies at the time. I definitely appreciated it as I went through the items - a baby book in Braille, a Braille alphabet book mark, information about Seedlings. And my favorite: those alphabet magnets that every kid has on their fridge, only these had Braille on them. The idea of learning Braille seemed so far off, and one aspect that I could still realistically lock away and not have to think about for awhile. We were told that the alphabet magnets were hard to come by, so we did put those on our dishwasher, and tucked the rest away for "later." In the months and year following, I would randomly hear about Seedlings here and there. Early Intervention would bring new books for Avery and their label was on the back, I heard of their </span><a href="http://seedlings.org/special.php" target="_blank"><span style="font-family: "georgia" , "times new roman" , serif;">Book Angel Program</span></a><span style="font-family: "georgia" , "times new roman" , serif;">, and signed Avery up for her free Braille book. I was looking for Christmas gift ideas for her, and was directed to Seedlings for ideas. We were urged to start running her fingers across Braille in the few books we had. But I still kept the idea of Braille at a distance. </span><br>
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<span style="font-family: "georgia" , "times new roman" , serif;">Fast-forward about five years, and my relationship with Seedlings has done a 180. Once Avery started pre-K, I was doing research on new ways to teach her, and I again stumbled upon Seedlings and learned more about the enormous impact they were making on children like mine. This small, grassroots organization has an incredible backstory. The concept was imagined by Debra Bonde in 1984, when she discovered how inaccessible and expensive Braille books were. She knew the value of literacy and reading and it should start at a young age, so the thought of blind and VI children being denied this was not acceptable to her. She started Seedlings in her basement, with a mission of making Braille books accessible and affordable for blind and VI children, as well as blind caregivers. Her first year, she produced 221 books basically by her own hands. Today, Seedlings (a 501(c)3 non-profit) has produced nearly 500,000 Braille books, and gives more than half of them away for free. Before Deb started, most Braille books cost upwards of $100, but Seedlings is able to sell their books for about $10 on average. Their mission of increasing the literacy rate among blind and visually impaired children so they can grow up to be independent adults has proved successful year after year. </span><br>
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<span style="font-family: "georgia" , "times new roman" , serif;">I've had the privilege and honor of serving on Seedling's Board for the last year and a half, and it has been one of the most rewarding experiences since having Avery. I've literally fell in love with this organization and how an idea to give every child the same access to literacy has turned into so much more. Because when you think about it, I can take my sighted child to the bookstore or library, and she can pick any book she wants, and that is definitely not the case for my VI child. While Avery still has some sight, that may not always be the case, and Seedlings allows her to have access to the same books her sister does. It's a little luxury that most people take for granted. So, looking back to that day when I first heard of Seedlings to now, I hope they know how much I value what they are doing. Since Avery could turn pages, reading is pretty much her favorite thing to do. She loves to flip through book after book, whether telling her own version of the story, or having us read to her. And now that she's learning Braille, everything is coming together for her. Seedlings has ensured normalcy in a piece of our lives, and for that, I am forever grateful. And for me, it has turned something scary into something positive.</span><br>
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<span style="font-family: "georgia" , "times new roman" , serif;">The purpose of me sharing this is because starting today, Seedlings is holding its first online auction fundraiser. They've been able to get some pretty awesome items up for bidding, such as four 1-day Hopper passes to Disney World, an Apple iPad with keyboard, Lions, Tigers and Wings game tickets, meet-and-greets, and many different types of gift cards of varying values. Every $10 raised makes another Braille book possible! If you have a moment, please browse the online auction, now through November 14th, and hopefully you'll find something you need (i.e. lots of Christmas gift ideas that will also serve a great cause). You can click here to get there: </span><a class="textlinks" href="http://www.biddingforgood.com/braillebooks"><u><span style="color: #09733c; font-family: "georgia" , "times new roman" , serif;">Online Auction</span></u></a><span style="font-family: "georgia" , "times new roman" , serif;"> (www.biddingforgood.com/braillebooks)</span></div><div style="line-height: normal;"><span style="font-family: "georgia" , "times new roman" , serif;"><br></span></div><div style="line-height: normal;"><span style="font-family: "georgia" , "times new roman" , serif;">Also, we have learned that the Children's Low Vision Resource Center in Royal Oak needs our help to keep its doors open. This was the place that first gave us our care package, information and resources about the VI world. These are offered to families at no cost, but the center is in need of help to keep this valuable program going for kids in our area. I'll be sharing more info on how to help! </span></div>
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<i></i><u></u><sub></sub><sup></sup><span style="font-family: "georgia" , "times new roman" , serif;">As always, thank you for reading, and following along on our story!</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">Ann</span></div>
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Ann Devereuxhttp://www.blogger.com/profile/10086881781904871494noreply@blogger.com0tag:blogger.com,1999:blog-6668929193420439522.post-10553234012345136292016-08-02T12:50:00.003-07:002016-08-02T21:11:14.804-07:00As of today...
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<span style="font-family: Calibri;">I haven’t posted in a while, so thought I’d give an update
on our little peanut and how life has been.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;">
</span></span><span style="font-family: Calibri;">Overall, Avery has been doing very well.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;">
</span></span><span style="font-family: Calibri;">She’s had regular “hiccups” that keep us on our toes, but all-in-all,
the keto diet and meds are doing their job in keeping seizures at a
minimum.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> Over the past month especially, she </span></span><span style="font-family: Calibri;">is progressing
behaviorally, her physical energy is improving, and still hasn’t really
regressed as far as baseline academics. </span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> Her PT told me today that she has met all the goals they set back in March! From where we started the year, she's moved some major mountains. </span></span><span style="font-family: Calibri;">(And I’m superstitiously knocking on
wood now.)</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span></div>
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<span style="font-family: Calibri;">Over the last six months, we have had some scattered ER
visits, surprise procedures and too many doctor appointments to count.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Besides the relentless eye issues, our most
frequent problem has been whenever she gets sick, and how that tends to open a giant
can of worms.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Whether it's a serious cause or a run-of-the-mill bug, it most likely means a trip to the hospital. </span><span style="font-family: Calibri;">Did she have a seizure, is it her shunt, is
it her cortisol levels, is it from the diet?</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> We base our level of panic </span></span><span style="font-family: Calibri;">on how bad she’s acting.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> But regardless, if </span></span><span style="font-family: Calibri;">she isn’t keeping her meds down, she can’t
miss a dose, so needs to get them via IV. </span><span style="font-family: Calibri;">Being sick affects her adrenal disorder, her
hypoglycemia, and lowers her seizure threshold.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;">
</span></span><span style="font-family: Calibri;">So basically, when she is sick, it’s chaotic.</span></div>
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<span style="font-family: Calibri;">She gave us a big scare in April, when she had a
tonic-clonic seizure (this is the type that most people think of when they
think of a seizure) the day after her 6</span><sup><span style="font-family: Calibri; font-size: x-small;">th</span></sup><span style="font-family: Calibri;"> birthday.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">We were definitely caught off guard, so it
was a humbling reminder of how unpredictable and relentless epilepsy is.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Thankfully, we caught it relatively quickly
and gave her emergency medicine.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">This
was a major learning experience, as it was our first encounter with a
“breakthrough” seizure since being home from her long hospital stay.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">When Avery was in the hospital January-February,
she had what is called intractable epilepsy, meaning, they couldn’t stop it
with any traditional methods.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">This can
cause irreversible brain damage and even a stroke.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">The induced coma plus the ketogenic diet were
able to break the continual subclinical seizures, but she is by no means
cured.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">So, we are to expect that “she
will likely have breakthrough seizures a handful of times per year*,” which is
what our Neurologist told us to prepare for.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;">
</span></span><span style="font-family: Calibri;">The asterisk being that this is just a minimum expectation – epilepsy
follows no straightforward rules.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">No two
people are alike, and there are caveats to every prognosis.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">She may have 3-4 a year, or she could fall
back into intractable epilepsy tomorrow.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;">
</span></span><span style="font-family: Calibri;">We have been told to expect anything.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;">
</span></span><span style="font-family: Calibri;">There is scar tissue webbed throughout Avery’s brain (left from the
meningitis infection), she has a foreign device implanted, effects from rising
and falling pressure on her brain - in general her brain is classified as “abnormal”
in terms of structure and activity.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;">
</span></span><span style="font-family: Calibri;">These are all factors that contribute to the misfiring that is
epilepsy.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Since most of her seizures
were “subclinical,” meaning only visible if connected to EEG, we have had to
learn about the other kinds.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Besides
that breakthrough seizure in April, we are only aware that she’s had at least
one Absence seizure, which are not convulsive, rather staring off and
unresponsive, followed by conking-out-sleeping (my technical terms).</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">These were likely triggered by stress or heat.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">At this point, there are not many options for
combating her epilepsy.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">She is not a
candidate for surgery at this time, which is bittersweet when you’re in a
refractory situation.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">We hope that the
medicines she is on continue to work, but the seizures often find ways to get
around those over time.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Sounds crazy,
and it is.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Same with the diet.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">We are often asked how it’s going and how
long she’ll be on it.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">It’s not a definite,
like everything else.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">It is working
right now, and she could be on it for 2-3 years, in the hopes that her brain
will reprogram.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">But our expectations are
realistic.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">We have researched enough and
talked to enough people to know that at any given point, it can stop
working.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">We hope that isn’t the case,
but are prepared to shift course.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">We
pray for the best scenario – she becomes seizure-free (or close to it) for at
least a year, and we can wean her off medicine, the diet and maybe on to CBD
(cannabis) oil.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">The side-effects of the
drugs are almost as damaging over time as the actual seizures, so the goal is
always to wean off them.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">And the diet is
not a long term solution either.</span></div>
<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3DuTVcEzhT9NuglE4Ywyzn9MBaIkoijvfYdbqp3A6o4hyphenhyphenQ6r6NcI1FKyiUWLHRPoxb1AkFGHc3fvvrCQvx4WixT2r_eKxTJZqWUjPDyDdxHYo68Bqj7fFzmBpRYCuWbsOziEDijYn7yk/s640/blogger-image-1026035160.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3DuTVcEzhT9NuglE4Ywyzn9MBaIkoijvfYdbqp3A6o4hyphenhyphenQ6r6NcI1FKyiUWLHRPoxb1AkFGHc3fvvrCQvx4WixT2r_eKxTJZqWUjPDyDdxHYo68Bqj7fFzmBpRYCuWbsOziEDijYn7yk/s640/blogger-image-1026035160.jpg"></a></div><br>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">She is a total champ with everything, though.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">She takes four medicines, multiple times a
day, in addition to her many eye drops.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;">
</span></span><span style="font-family: Calibri;">All in pill form, because liquids contain sugar.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">We cut them up and she just takes them –
still amazes me.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">The seizure pills make
her really tired, but that seems to be getting better.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">And she actually eats these crazy keto
meals!</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">I look back to where we started
and am very grateful things got better, because it was a nightmare in the
beginning.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">We are fortunate that she is
the way she is in regard to this diet, because she doesn’t completely
understand that everyone else is eating better foods – or maybe she does, and
is just quietly cooperating, which is just as likely!</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">I always say that if Lucy was the one needing
to do it, I don’t know how long it would last.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;">
</span></span><span style="font-family: Calibri;">Avery asked for other foods for the first few weeks, but has
adjusted.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">I did stop buying many of her
old favorite foods for “solidarity” purposes, and we try not to talk about
bread, cereal, ice cream, etc. in her ear shot.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;">
</span></span><span style="font-family: Calibri;">Prepping meals, weighing everything and following the schedule has just
become part of our routine, and we are always figuring out new recipes and ways
to make it more palatable.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">And, we are
learning how to make the most of being on this type of diet.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">She is not an ideal age or on the ideal
version of keto - especially for a kid with growth issues to begin with - but
choosing the cleanest and most healthy fats that we can will hopefully reduce
all the downfalls of putting a small child on a restricted diet such as
this.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Because we don’t have a choice
right now.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span></div>
<br>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Epilepsy has come with a lot of new baggage that really
sucks.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">She has additional restrictions
on top of an already long list of restrictions.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;">
</span></span><span style="font-family: Calibri;">While it was never recommended she be in high heat for a long period of
time due to hydrocephalus, it is much stricter with the risk of seizures.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Her body doesn’t seem to regulate temperature
like it should.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">And in general, heat and
high humidity, for whatever reason, are triggers for seizures, so we are
limited on hot days. </span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Instead, we take
her to her favorite indoor places, or go out for short periods of time.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">The times we have kept her out longer than
usual, we see an obvious difference in her behavior, so it’s a precaution we
take very seriously.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Anything we can do
to prevent a visit to the ER, we will do.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;">
</span></span><span style="font-family: Calibri;">In addition to heat, she can’t participate in pretty much anything
involving food, which breaks our hearts.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;">
</span></span><span style="font-family: Calibri;">Birthday cake, going out for ice cream this summer, eating at a
restaurant, etc., are just not options.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;">
</span></span><span style="font-family: Calibri;">And we don’t feel right doing them in front of her, despite the fact
that she’d probably not see or notice anyway.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;">
</span></span><span style="font-family: Calibri;">It’s something we are working on making as “fair” as possible.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">She isn’t interested in other rewards, such
as stickers or getting to pick out new toys.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;">
</span></span><span style="font-family: Calibri;">We have to be creative with her, and follow very unconventional methods
of rewarding, entertaining and passing time.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;">
</span></span><span style="font-family: Calibri;">The diet also limits her energy and contributes to her hypoglycemia, so
it’s not like she can run around for hours.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;">
</span></span><span style="font-family: Calibri;">Then there’s all the “extras” – the side-effects of her issues as a
whole: behavior and sensory issues, and being developmentally delayed.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">While they’re secondary to our immediate
concerns, they affect daily life for all four of us.</span></div>
<br>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I’m sure it’s noticeable when we come to a barbeque or
gathering that things are different or we seem distracted.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Or we just don’t come.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Or half of us come.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">And I can see how it can be misunderstood for
being antisocial or stand-off-ish, but it's really not. </span><span style="font-family: Calibri;">I am an admitted helicopter
mom with Avery, and being that I’m completely not with Lucy, shows that it’s
because of the very different experiences I’ve had with my two children.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">We have to be mindful of so many things when
we’re out of our house and it often contributes to how we’re acting.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">With her limited vision, and still learning
to properly use her cane, we have to make sure she doesn’t wander off, bump
into something, fall down stairs, etc.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;">
</span></span><span style="font-family: Calibri;">With her other health issues, we have to make sure she isn’t grabbing
food somewhere, or that another child isn’t giving her food because they don’t
know she can’t have it.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">If it’s hot, we
have to make sure she is staying cool and taking breaks.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">And since her diet provides limited energy
from food, she can’t burn her “reserves” by over-exerting herself.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> It's a lot to keep up with, while still letting her be a kid. </span></span><span style="font-family: Calibri;">We
struggle every single day with finding balance between living life and being
safe.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Some days we go overboard.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Some days it’s hard to come to events.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">It’s been six months since we took a child
home from the hospital that we were told may not ever leave her bed.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">It’s scarring and takes time to adjust
to.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">And each time a hiccup happens, we
are a bit more guarded.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">We aren’t even
at a point now where leaving a 20-mile radius of Children’s Hospital is a smart
option.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">What seems to be the hardest
point to convey is that this lifestyle isn’t changing for us; Avery doesn’t
have the types of disorders that go away.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;">
</span></span><span style="font-family: Calibri;">But how we handle it hopefully will get better.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">We just need practice and time to loosen
up.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">She has evolved over the last six months –
sometimes taking two steps forward, then one step back.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">I know her body language when it’s becoming
too overwhelming or too exhausting.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">And
I know her body language when something is just not right.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">So it’s important to me to explain because I
want those close to us to understand a little better.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span></div>
<br>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Our newest concern (as if the kid needed another thing) is
her left eye – which is her only working eye – and it is having glaucoma issues
again.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">To put off surgery, we tried
another med, but she had a horrible reaction to it, so that's not an option.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">We try to avoid surgery at all cost, but </span><span style="font-family: Calibri;">sometimes it’s the only option to save her remaining sight.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">She had a procedure last week to determine if
the tube in her eye is filtering fluid properly, or if there is a need for a
second tube.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">It was a good and bad
outcome in that they were able to fix the present tube, but the pressure shot
way down, which can potentially cause other issues.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">We have been in the office many times since
to ensure her eye is recovering properly, and during one visit, we learned of
an additional issue on the surface of her cornea.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">This cornea has been stable for three years,
so that’s another devastating kick to the gut.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;">
</span></span><span style="font-family: Calibri;">Keeping this eye functional is Avery’s only shot at sight.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">No, it’s not life-threatening, but to take
away the limited vision she has would seriously impact her life.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">It took her months to slowly regain the lost vision effects of the seizures, so she just doesn’t need another road
block.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">And, any anesthesia is a bigger
pain in the neck these days, so it’s all more complicated.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Your prayers and positive thoughts are much
appreciated, as always.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span></div>
<br>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Despite all the challenges, as of today, we really are doing
well.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Or better than expected, not sure
what’s more accurate :)</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">We’ve been able to
get into a (new) new normal with daily routines and juggling everything that is
our life.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Spending quality time with the
girls is a priority, any way we can make that happen.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Lucy is a wonderful little sister, and as of
last week, is officially potty-trained!</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;">
</span></span><span style="font-family: Calibri;">Such a relief to check that off our list.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">She’s also starting to understand more why
Avery sometimes gets more attention, or why she has to stay at (</span><i style="mso-bidi-font-style: normal;"><span style="font-family: Calibri;">insert one of our generous helper’s name</span></i><span style="font-family: Calibri;">)’s
house while we go to the doctor with her sister.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">She already is and is going to be a great
protector.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">She and I were able to get
away for a few days up to Charlevoix, so that was a nice break for both of
us.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">John’s turn next </span><span style="font-family: Wingdings; mso-ascii-font-family: Calibri; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Calibri; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;">J</span></span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span></div>
<br>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">If you are one of the people we’ve had to cancel on,
reschedule with, or just say “no” to plans with in the last 6 years, know we
are sorry and hope you understand.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">We
make every decision around Avery and her needs, from whether we can go
somewhere, how we can both keep up our work schedules, and in making plans for
the future.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">We appreciate everyone’s
patience, understanding and support as we navigate this.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">We aren’t as available, reliable or fun as we
want to be – but please know that we really do want to be more of those
things.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">As the kids are saying these
days, the struggle is real…with good days and bad days.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">We are very thankful for a stretch of good
days.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">As with most things in life, it could always, </span><i style="mso-bidi-font-style: normal;"><span style="font-family: Calibri;">always</span></i><span style="font-family: Calibri;"> be worse.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> Try not to sweat the small stuff or take your health for granted...it is the most important thing. </span></span><span style="font-family: Calibri;">Thank you for following her story and your
support for our family!</span></div>
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<span style="font-family: Calibri;">-Ann</span></div><div style="margin: 0in 0in 8pt;"><span style="font-family: Calibri;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjN8j3zwfLNcHnYXklqwENibAHZQoF1pO3f6WuEnOzRS8e_fHGtkwTrEVtAiG0_FMV9ThnyT27Dkd6m1Vj5jGGGt9tT8iSdqu1CRw1i5nokUe_4LhoxKj9w5WZKRxdNUFsyZn2872Gmmks/s640/blogger-image-1517087806.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjN8j3zwfLNcHnYXklqwENibAHZQoF1pO3f6WuEnOzRS8e_fHGtkwTrEVtAiG0_FMV9ThnyT27Dkd6m1Vj5jGGGt9tT8iSdqu1CRw1i5nokUe_4LhoxKj9w5WZKRxdNUFsyZn2872Gmmks/s640/blogger-image-1517087806.jpg"></a></div>Keywords: epilepsy, intractable epilepsy, ketogenic diet, Peter's Anomaly, glaucoma, cornea transplant, pediatric seizures, hydrocephalus</span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>Ann Devereuxhttp://www.blogger.com/profile/10086881781904871494noreply@blogger.com0tag:blogger.com,1999:blog-6668929193420439522.post-58476273103610940232016-03-23T16:09:00.001-07:002016-03-23T16:37:16.437-07:00Our new normalIt's hard to believe that we've been out of the hospital for over a month. Readjusting to life at home has been challenging, to say the least. It probably seems like we would just be elated to be home, and all under one roof - and we are. However, it's not like flipping a switch and everything is back to normal. Our life was put on hold for over six weeks - which means we basically abandoned our jobs, house, plans, and even our other child. Coming back to reality was daunting, and we are just now starting to feel somewhat comfortable with our new routine. In addition, we truly took home a different child than we brought in, and that has introduced a whole new list of challenges, responsibilities and limitations. We are trying to "come down" from a constant state of high-alert, and looking at Avery like a ticking time-bomb who will either vomit, fall unconscious, or erupt into seizures at any point. We were shell-shocked by this experience. For almost two straight months, we witnessed so many alarming issues on a daily basis, and that's going to traumatize even the toughest person. <br>
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The seizure disorder has caused Avery to regress in many aspects of her life - walking, vision, eating, potty training, behavior, endurance...to name a few. We added weekly PT and OT to regain her strength, and we are starting to push her more in daily routines and being more independent, so she gets back into doing more things that we've been forced to do for her over the last three months. Although Avery has always been developmentally delayed, she was able to feed herself, tell us when she had to go potty, etc., and now, we are starting 10 steps back. To sum it up with a clear reference, Lucy (who is 2 years old), surpassed her almost-6-year-old sister in every developmental milestone long ago. In addition, she takes three new seizure medications that make her more moody, tired, and impact her cognition. Avery went into the hospital on January 1st with an already atypical brain, and adding the intractable epilepsy has unfortunately worsened her cognitive impairment. At this point, between her neurological disorders and vision impairment, the doctors are expecting Avery to be dependent on us for the rest of her life. <br>
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Needless to say, it's been overwhelming, but John and I are tackling everything 50/50. This is thanks to the flexibility and understanding of our wonderful employers, and help from family and friends. We had a lot to arrange right away - the new ketogenic diet, homebound schooling, insurance changes, new doctor appointments, therapies and follow-up tests... oh, and catching up on the responsibilities we ignored for two months. We've made a point to try to keep to a daily schedule, and stay as organized as possible, because it's the only way to keep sane. The main new fun addition to our lives is Avery's ketogenic diet. We have had a lot of questions about this and if you have time for some additional reading, it's best explained in this wonderful article (<a href="http://nyti.ms/1BVNe9G">http://nyti.ms/1BVNe9G</a>). It's not the ketogenic diet that some people go on for weight loss. It is specifically for seizure control. Her body needs to be in a state of ketosis (burning fat for energy, rather than glucose) and that suppresses seizures. In order to do that, she eats a strict ratio of 4:1 fat to carbs/protein. A typical meal for Avery consists of 90% fat (like butter, heavy cream, mayo, macadamia nuts, or coconut oil) and a teeny bit of protein and carb. The recipes are quite alarming at first, and everything is carefully weighed on a gram scale, and calorie-restricted so that she doesn't gain or lose too much weight. She takes vitamins and a supplement to fill in the holes, but goes in for regular blood tests to ensure she isn't deficient in anything. I can still buy organic, even if it's organic butter and organic heavy whipping cream :) We prep meals for the week every Sunday, and it takes up most of the day. Convenience with regard to food is out the window. We can no longer grab a quick granola bar for the road, or make a simple sandwich for her. Leaving the house requires a lot of time and planning, and usually a cooler. Eating at a restaurant (which we won't be attempting for a looong time) means bringing our own food for Avery. She cannot eat any of her old favorite foods. (Except peanut butter, which is always mixed with a ton of butter.) The first month or so on this diet was brutal. She was constantly asking for Cheerios, oatmeal, "squeezers" (those fruit smoothie pouches) and macaroni and cheese. We couldn't seem to make anything that was remotely appetizing to her, and so she is typically left unsatisfied and wanting something else immediately after a meal. To hear your child cry for food all day long is torture. It brought me back to the time when she was a newborn and I couldn't get her to take a bottle. To know that your child is hungry is unnerving. But, as every experienced keto parent assured me, things are getting better. We are getting the hang of meal prep, what Avery likes (well, tolerates), and how to better manage. And she isn't constantly begging for food all day anymore. Although she still would love a big bowl of Cheerios, rather than what she is forced to eat, she's toughing it out, as she does with everything else. And we have to think of it just as a parent of a child with diabetes, allergies, celiac disease, etc. has to. It is so hard, but necessary to keep our child healthy. This diet is keeping Avery's seizures away, and that's what we focus on.<br>
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The other big chunk of Avery's issues - her eyes - which had taken up the majority of 2015, were suddenly put on the back burner during the hospital stay. We knew that the seizures were affecting her vision, but we couldn't do anything about it, so tried not to dwell on it. It was the least of our problems at that point. The strong medicine, especially the one that put her in the "coma" affect your senses, so the combination of continual seizures and medicines, on already poor vision, left her with light perception only for several weeks. When she showed no interest in her iPad, which is normally her best friend, we knew it was bad. Slowly, her vision started to return, although it's still worse than before. The seizures were primarily in her right occipital lobe, which affects the left field of both eyes. Since Avery doesn't have sight in her right eye, she was basically left with limited vision out of the right field of her left eye (how's that for confusing?). So long as her seizures remain at bay, this should improve over time. But anytime they flare up, we'll notice a significant change in her vision. <br>
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Before all of this craziness, we had planned to do an eye procedure on her right eye that would hopefully preserve it, in the hopes that future technology would allow us to bring back any sight down the road. This procedure was obviously put off, and we had a feeling that the window for it being an option was closing. We were right. This morning, Avery's retina specialist saw her under anesthesia, and confirmed that it would no longer be of benefit to her. We now have to meet with an Ocularist, which is someone I hoped to never have to meet. They make prosthetic shells, which she will wear over her "rested" eye. Thankfully, we shouldn't need to remove the eye, which was a huge fear of mine. I'm still processing this, so I will just leave it at that.<br>
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The more time that Avery stays healthy, the easier we can breathe and start to relax. But every day, there is a time when the weight of our reality hits me like a ton of bricks. We have a medically complex child who has been faced with challenge after challenge in her short 6 years of life. She is living with very limited sight, which could potentially disappear completely at any moment. She has a severe form of epilepsy, and depends on a device in her brain, a difficult diet, and many medications to keep her alive. When we have a good day, I sometimes forget all of this for a second, and suddenly, it jumps back into my memory and scares the crap out of me. But, we have to do our best to push past these feelings. After all, there were several times this year that we didn't know if we'd even bring Avery home. Or if we'd bring her home to be bed-bound. What we have today is so much better than that prognosis we were given two months ago. This is amazing, and I'm eternally grateful for it. There is no choice but to push through each day, allowing ourselves the occasional pity party. If we can come out of that experience in one piece (pretty much), I think we can handle anything. We've come out of it a little stronger, a lot more tired, and with more items to add to our honorary medical resume (ha). This morning, just before her doctor delivered the news about her eye, he said, "She's just the happiest kid, despite all she's been through." This means so much to me, because all I want for Avery is for her to be happy. We may not have many other things, but we do have that.<br>
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Thank you all for your incredible support through all of this. We honestly couldn't have made it through without it. We'd love your continued prayers and positive thoughts for Avery, as she continues to recover. In addition, John's side of the family could all use prayers now too. This year is being hard on all of the Devereuxs in different ways. Thank you, xo<div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7p4xczncVbopuvtdzCtP4ajUPMn7D5mO2w7rTrhwhRV7xaB208t2WsSlE9s7nESj9YqWVWGV2L9bUUzq2EPcvwRk6LUbFL8CKLVg055EzxBDw_SuA3ZCdx_vOD8Bt9fm06MWurWjRir4/s640/blogger-image--126281098.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7p4xczncVbopuvtdzCtP4ajUPMn7D5mO2w7rTrhwhRV7xaB208t2WsSlE9s7nESj9YqWVWGV2L9bUUzq2EPcvwRk6LUbFL8CKLVg055EzxBDw_SuA3ZCdx_vOD8Bt9fm06MWurWjRir4/s640/blogger-image--126281098.jpg"></a></div><br></div>Ann Devereuxhttp://www.blogger.com/profile/10086881781904871494noreply@blogger.com1tag:blogger.com,1999:blog-6668929193420439522.post-41421300074338559282016-01-24T11:29:00.001-08:002016-01-24T11:29:12.054-08:00The new year<p class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><i>“The smell of hospitals in winter, and the feeling that it’s all a lot of oysters, but no pearls.”</i> – Adam Duritz, <i>A Long December</i></span></p><p class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></p><p class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Silly me. I thought I would wish away my unlucky, odd-numbered year and 2016 would be magically better. I said that I couldn’t be shocked by much anymore, but I was wrong. I haven’t seen the “old” Avery in 24 days. The smiling, laughing, chatty, jumping-around Avery has been replaced by a different Avery, but I love her just the same and have been sitting at her bedside in the ICU at Children’s Hospital for those 24 days. To describe this month to anyone who hasn’t lived it would be impossible. Though we have seen and been through so much with Avery since her birth, these last 24 days have probably been our most challenging to date. The fear of the unknown and what the next days, hours, minutes will bring have not left us this entire time. Wondering when and if we will get to bring our girl home, and if she will ever be the same. If she’ll continue to live the life she was living, or have even more limitations than she already faced. Wondering how our day-to-day will change, and if I will live in this constant fear for the rest of my life. I didn’t think I would ever sit down and blog during this hospital stay, but writing things down has always made me feel better, so while this entry may be TMI to some people, it’s helping me get through this day.</span></p><p class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></p><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqGbM_xEgLhKTzxmyHRYJd35_dT3_JAo42MnPBvhszugnNMrnvL0aIg6pwKNeHAB71_Xk7gNaXZCOEOTApLQirNpdcvn1bWUm6TKrmQazdcOGmADim7swROa0GOka3cJQcfm8mmWH4sH4/s640/blogger-image--240462188.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqGbM_xEgLhKTzxmyHRYJd35_dT3_JAo42MnPBvhszugnNMrnvL0aIg6pwKNeHAB71_Xk7gNaXZCOEOTApLQirNpdcvn1bWUm6TKrmQazdcOGmADim7swROa0GOka3cJQcfm8mmWH4sH4/s640/blogger-image--240462188.jpg"></a></div><p></p><p class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Avery has been predisposed to seizures her whole life. We were warned of them along the way, but like everything we’ve been warned about, we just wish they never happen. She had one seizure last January, but being that it was coupled with extremely low blood sugar, we resolved it quickly and her follow up tests didn’t show a continued need to worry. But on January 1<sup>st</sup>, just as John and I had left to go on a date, we were quickly called back by my dad because Avery had vomited and was seizing. I was shocked. We arrived back as she was being put into an ambulance in the driveway at my grandmother’s house in Milford. She had three more convulsive seizures that evening, and required several doses of strong medications to stop them. She also needed to be intubated, after her breathing began to suffer. I kept thinking it was a terrible nightmare that couldn’t possibly be real; and I’ve continued to think that every day since. The events between January 1<sup>st</sup> and now have led us to the realization that Avery now suffers from Refractory Status Epilepticus, and so far, non-convulsive (meaning only detectible on EEG) seizures have been her main enemy. This is a serious, incurable condition, and so very far from the image we had in our minds of what her seizures could ever amount to. Although the 4 different seizure meds we’ve tried have kept them from becoming convulsive, she was still having 20-30 non-convulsive ones per day, ranging in length of time from seconds to over an hour. Between the constant seizing and the strong anti-convulsants required to stop them, she has not been herself. If she’s awake, she’s in a medicine fog, which limits her motor skills, her sight and her ability to speak and hear. A good day is constituted by her eating, saying a few words, and answering a question. The doctors went through every imaginable test and possibility for what set off these seizures – why now? And unfortunately, no clear cause has been determined. Her atypical brain structure, and her having meningitis (with permanent damage) as a newborn just left her predisposed to them. They have also tried every possible treatment that Avery qualifies for. We’ve even discussed surgically removing part of the brain that causes the seizures – a surgery I had only heard about previously, and was terrified of. But when you’re desperate to bring your child “back,” you’ll be open to anything. Unfortunately, the surgeons cannot determine a definitive focal point in her brain to remove. Which brought us to last Monday: the conference. Fifteen neurologists from the area, plus her team of neurosurgeons, and image specialists met and reviewed Avery’s case. They reviewed each test result, piece of her history, MRI, PET scan, CT scan and tried to figure out a treatment that could help her. They came away with one good answer, which was the pentobarbital coma. Sometimes the brain is like a computer – if it’s acting up or stuck or going haywire, you reboot it. The coma basically puts her brain on pause, and you slowly reboot it and hope that it breaks the pattern of seizures. The success rate is not great, but at this point was our best option. However, there are risks. She would need to be intubated again, since the medicine inhibits the body from carrying out its jobs – most importantly, breathing. She would need constant, close monitoring. We had to sign a form that basically stated this was an “elective,” procedure. I found this pretty funny – they’re telling us this is the only current treatment possibility for her, but that it’s still considered “elective”…did they mean like a face lift? </span></p><p class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></p><p class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">We trusted the team, and agreed to try it. The process has been brutal. Watching a crowd of doctors put your child in a medicine-induced coma is beyond anything I’ve witnessed before. Her room has been quite busy ever since that morning last Tuesday, and watching our child lay asleep in a bed, with a machine breathing for her, a tube feeding her, and nurses constantly caring for her, gets harder each day. And now we are in the “wait and see” phase. She’s been in the process of weaning off the pentobarb since <a dir="ltr" href="x-apple-data-detectors://5" x-apple-data-detectors="true" x-apple-data-detectors-type="calendar-event" x-apple-data-detectors-result="5">Friday morning</a>, but it’s not as fast as we thought. She’s taken a few breaths on her own today, and tried to cough. Her EEG has been clear of seizures so far, but we aren’t anywhere near in the clear. We’ve become obsessed with watching that EEG, and I think we could say that we have minored in Neurology at this point. Being that no treatment up to this point has been successful, it’s very hard to be hopeful. I’m just waiting for them to come read a seizure on the EEG history, and break the news to us. But, we kind of expect at this point that she will never be “seizure-free” again. Best-case scenario, she is, but next-best-case (and more realistic) is she has less-frequent seizures, and we can take her home on two medicines, and possibly on a ketogenic diet. Worst case is they come back in full-force, and then I don’t know what will happen. I really don’t know if our time here is days away, or weeks away, and the pressure is killing me. </span></p><p class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></p><p class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I miss Avery so much. While she is here physically, she has not been “here.” I miss her constant stream of questions from the back seat of the car, her whining to get more time on the ipad, her turning on and off every light switch she can reach, or hiding in our shower when we aren’t looking. I miss hugging her without 20,000 wires getting in my way. I miss the life I thought was so difficult, but seems like a breeze right now. I also miss Lucy so much. She’s been traveling around from person to person these last three weeks, and we get to “visit” with her in between. She’s starting to get used to it, which I find comforting and sad all at once. I feel like I’ve been robbed of at least three weeks that I’ll never get back with my girls.</span></p><p class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></p><p class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I know once we do leave here, that my perspective on life will be so different. Besides the horrors of our own situation in our own little ICU room, we have witnessed the saddest things I’ve ever witnessed in life, in this unit. It’s one of the most depressing places to spend time, and lately, just driving into the parking garage here makes me nauseous. I think we’ll be changed by this forever. John has, as always, been my steady rock through it all. I know he’s hurting too, but he always handles the stress so much better than I can. He keeps me sane by reminding me that we are in it together, and we will come through it together. While our future might be more difficult, and our new “normal” will be different, we will do it together, as a family. That is the one thing I can hang onto right now.</span></p><p class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></p><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8SoqvMOaFv79Cfkm2zgXTfkUkpohcyR9z_qXqCZpr8UrF_a0T7aAxJBuyhv4mYhTKiKU_kQ_Wz8levRNg8EGceFi9Sf4oYPvw8a5NktrlYaMqWlbZm4fCledTnwS8yWzTCvXmCuvKcAg/s640/blogger-image--831514810.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8SoqvMOaFv79Cfkm2zgXTfkUkpohcyR9z_qXqCZpr8UrF_a0T7aAxJBuyhv4mYhTKiKU_kQ_Wz8levRNg8EGceFi9Sf4oYPvw8a5NktrlYaMqWlbZm4fCledTnwS8yWzTCvXmCuvKcAg/s640/blogger-image--831514810.jpg"></a></div><p></p><p class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">They say that situations like these will show you who your “real” friends and family are. Again, I say that we must be incredibly lucky, because everyone has been beyond supportive from day one. I never go a day without feeling the love and support of people in our life. Both sets of parents have taken the majority of the workload, and we are forever grateful for them, as I know they are suffering each day with worry. Thank you to everyone for supporting us in so many ways. All we care about is knowing that you’re behind us, and praying for Avery to get better, and you’ve done so much more than that. In the past, situations like this have chiseled away at my faith – in God, and in life in general. I feel like this time, I can get through those dark times more quickly, and my heart hasn’t hardened as it has in the past. There is always a homeless person standing with a sign at the corner of Mack and Beaubien, just outside the hospital. In the past, I felt warranted in being cold and ungenerous to that person – after all, they probably put themselves in their bad situation, and my daughter sat in a hospital bed, and was worse off, to no fault of her own. But this time, I find myself reaching into my wallet, if I have time before the light turns green, and giving them some money. Because you can let the dark thoughts overtake you and completely harden your heart, or you can give yourself some time to be angry, then decide to move forward. That is my only option in this, because being constantly angry and depressed does not one thing for Avery. She deserves better than that, and I am grateful to have learned that this time around. So while I definitely have my moments, and my bad days, I make the conscious effort to move forward, and only speak positively to her; whether she can hear me or not.</span></p><p class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></p><p class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Please continue to pray for her – we are far from out of the woods, and we’ll need every positive thought we can get! Thank you for everything….</span></p><p class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"></span></p><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQnb-Pjjv1fG0FNV0XPdEppsI3t0dXYBmRs3ycb_i4_sXshEGXs5Yb7TnnVP1gZE17QLQ0eZdMM8n_6PbDDNPxKbW_muy3ox-pBU4JF04mMwoapRaZPP_SJKhz1Fx-JfQWxRfrlNxS3zU/s640/blogger-image-1352646900.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQnb-Pjjv1fG0FNV0XPdEppsI3t0dXYBmRs3ycb_i4_sXshEGXs5Yb7TnnVP1gZE17QLQ0eZdMM8n_6PbDDNPxKbW_muy3ox-pBU4JF04mMwoapRaZPP_SJKhz1Fx-JfQWxRfrlNxS3zU/s640/blogger-image-1352646900.jpg"></a></div><br><p></p>Ann Devereuxhttp://www.blogger.com/profile/10086881781904871494noreply@blogger.com3tag:blogger.com,1999:blog-6668929193420439522.post-6396281469368580612015-12-31T10:25:00.000-08:002015-12-31T10:25:25.572-08:00There'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.<br />
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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.<br />
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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.<br />
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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...<br />
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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.<br />
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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.<br />
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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. "<i>This is all manageable, but when adrenal crisis starts, the child will deteriorate very quickly."</i> 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.<br />
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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.<br />
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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.<br />
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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."</div>
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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</div>
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Ann Devereuxhttp://www.blogger.com/profile/10086881781904871494noreply@blogger.com0tag:blogger.com,1999:blog-6668929193420439522.post-83566720830928856452015-10-27T09:00:00.000-07:002015-10-27T17:19:46.965-07:00Fall update<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrziFnk7gjiKaualGll1xJMHx7OikWN0uhsyjZzBbaN8l8JecqOEbV7nuWqCdt2EiRMb6mamImi5jTdRdvgiIJOm33iA0BnHhswyPM3xbL2-QCP5gx-nwJ450XIuMz0UmMW0ZEeWOPCpc/s640/blogger-image--895004181.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrziFnk7gjiKaualGll1xJMHx7OikWN0uhsyjZzBbaN8l8JecqOEbV7nuWqCdt2EiRMb6mamImi5jTdRdvgiIJOm33iA0BnHhswyPM3xbL2-QCP5gx-nwJ450XIuMz0UmMW0ZEeWOPCpc/s640/blogger-image--895004181.jpg"></a></div>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 <i>reminds</i> me daily to look at each situation differently, and to be present. <br>
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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.</div>
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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.</div>
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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<br>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! <br>
As always, we are grateful for the support of our parents, family and friends - we welcome your continued prayers and good vibes!!</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHGKua88Thu8QJ66LWznXYsFu0UrFgX6IMKq_Akka3RETf1aFq9-tMCR2-N6pkOTlmqI9EMECxwZIiWirV2xlBCFn7xQ4aLyFX8ivBHjAYy7d83Tvaj0Lj3cPUFnpqJbssuS0WnkbX_z8/s640/blogger-image-1022382245.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHGKua88Thu8QJ66LWznXYsFu0UrFgX6IMKq_Akka3RETf1aFq9-tMCR2-N6pkOTlmqI9EMECxwZIiWirV2xlBCFn7xQ4aLyFX8ivBHjAYy7d83Tvaj0Lj3cPUFnpqJbssuS0WnkbX_z8/s640/blogger-image-1022382245.jpg"></a></div><br></div>
Ann Devereuxhttp://www.blogger.com/profile/10086881781904871494noreply@blogger.com0tag:blogger.com,1999:blog-6668929193420439522.post-26999585656388381062015-09-07T19:38:00.000-07:002015-09-07T19:46:10.014-07:00First 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. <br />
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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. <br />
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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.<br />
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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.<br />
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Some of your current favorites:<br />
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<li>the ipad! You can navigate YouTube, Amazon Instant Video and the Nick Jr. app like a pro.</li>
<li>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.</li>
<li>Exploring new places, especially stores like Barnes & Noble</li>
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Some of your Avery-isms:<br />
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<li>Hearing a familiar voice, and announcing as loud as you can that they're "here!!"</li>
<li>Cracking up when we tell you your feet are stinky, or your hair is messy or anything is yucky or gross.</li>
<li>Turning the lights in the basement off, and giggling as you wait for a reaction.</li>
<li>Never wanting to finish a meal - announcing "all done" after two bites. Except for cookies or anything with sugar!</li>
<li>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.</li>
<li>Asking us to roll the car window down.</li>
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Ann Devereuxhttp://www.blogger.com/profile/10086881781904871494noreply@blogger.com0tag:blogger.com,1999:blog-6668929193420439522.post-173824536037679222015-09-01T15:00:00.002-07:002015-09-01T15:30:21.239-07:00The WaitSince 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. <br>
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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. <br>
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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. <br>
<br>
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. <br>
<br>
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.<br>
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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. <br>
<br>
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.<br>
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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,<br>
Ann<br>
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<br><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAEIATc52kqbZ2DBOuPCq0OYLDTixsaa4_6eTaf3rmA7Q65a3XHaESDikr3thsj3B52PCE0gzkmuKkP3w5iS2O16eVMqS8VCBrG1hr9PHViM2pFSC2AI3uIEbwCW1RvZuBBhTBtzmkfMw/s640/blogger-image-1241807583.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAEIATc52kqbZ2DBOuPCq0OYLDTixsaa4_6eTaf3rmA7Q65a3XHaESDikr3thsj3B52PCE0gzkmuKkP3w5iS2O16eVMqS8VCBrG1hr9PHViM2pFSC2AI3uIEbwCW1RvZuBBhTBtzmkfMw/s640/blogger-image-1241807583.jpg"></a></div>Ann Devereuxhttp://www.blogger.com/profile/10086881781904871494noreply@blogger.com3tag:blogger.com,1999:blog-6668929193420439522.post-38952448845705424932015-04-12T18:27:00.000-07:002015-04-12T18:32:09.534-07:00Five<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguq4JXHBLX2PNFeA1MH9KfCuV5kYTkU9rhKrzwWqWK5aYSZuF4JzoPw_6H1vEbj8EKtaiVRWH4123qXKjpdgkixgaMSsYvZxJ-b96ubThz3B29ISWyc_uA7d3BKPu_OvK-6ZBz0hsdFMI/s640/blogger-image--1970338480.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguq4JXHBLX2PNFeA1MH9KfCuV5kYTkU9rhKrzwWqWK5aYSZuF4JzoPw_6H1vEbj8EKtaiVRWH4123qXKjpdgkixgaMSsYvZxJ-b96ubThz3B29ISWyc_uA7d3BKPu_OvK-6ZBz0hsdFMI/s640/blogger-image--1970338480.jpg"></a></div>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 <i>saying</i> 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.<br>
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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.<br>
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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.<br>
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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. <br>
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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. <br>
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Happy Birthday to my favorite 5 year old - you will always be my baby... xoxoAnn Devereuxhttp://www.blogger.com/profile/10086881781904871494noreply@blogger.com1tag:blogger.com,1999:blog-6668929193420439522.post-59815073027830859082015-02-11T15:50:00.000-08:002015-02-11T15:54:51.485-08:00A bad weekI'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....)<br />
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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 <i>full-time job</i>. 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.<br />
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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 <i>talked</i> 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.<br />
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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. <br />
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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. Ann Devereuxhttp://www.blogger.com/profile/10086881781904871494noreply@blogger.com0tag:blogger.com,1999:blog-6668929193420439522.post-30977629550175892672014-10-30T13:18:00.000-07:002014-10-30T13:18:49.573-07:00Sometimes reality bitesThere 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.<br />
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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:<br />
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"Can your child jump over a number of objects in their path without stopping?" No.<br />
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"Does your child take off their shirt/shoes/pants without help?" No.<br />
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"Does your child look for a toy that is covered at least 2 feet away?" No.<br />
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"Does your child show awareness of how others feel by saying things like "he is mad," "you are cranky"? No.<br />
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"Does your child like to play alongside other children instead of playing alone?" No.<br />
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"When an adult points to something, does your child look where the adult pointed?" No.<br />
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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. <br />
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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!) <br />
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 <i>why</i> 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 <i>super </i>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. <br />
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.<br />
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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 <i>can</i> 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. <br />
As always, we appreciate <u>everyone's</u> 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!Ann Devereuxhttp://www.blogger.com/profile/10086881781904871494noreply@blogger.com0tag:blogger.com,1999:blog-6668929193420439522.post-56937516611181144722014-10-01T10:09:00.001-07:002014-10-01T10:09:45.877-07:00Auntie KathyOne 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. <br />
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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 <i>still really suck</i>. 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!<br />
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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. </div>
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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. <br />
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!!<br />
If you would like to follow Kathy's battle with breast cancer, please visit her page at: <span class="Apple-style-span" style="color: #141823; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 19px;"><a href="http://www.caringbridge.org/visit/kathysfight3" rel="nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">www.caringbridge.org/visit/kathysfight3</a></span><br />
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Ann Devereuxhttp://www.blogger.com/profile/10086881781904871494noreply@blogger.com1tag:blogger.com,1999:blog-6668929193420439522.post-39825849646792564692014-08-14T06:26:00.000-07:002014-08-14T06:57:35.280-07:00One 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. <br>
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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.<div>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.<br>
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So today is like another birthday for my girl - Happy Shunt Anniversary... ice cream for everyone!<br>
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<br></div>Ann Devereuxhttp://www.blogger.com/profile/10086881781904871494noreply@blogger.com0tag:blogger.com,1999:blog-6668929193420439522.post-61947920583129916242014-07-28T11:36:00.001-07:002014-07-28T11:36:51.633-07:00Paying it forwardThe 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.<br />
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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.<br />
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<a href="http://www.childrensdmc.org/AveryDevereux">http://www.childrensdmc.org/AveryDevereux</a><br />
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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.<br />
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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. <br />
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<br />Ann Devereuxhttp://www.blogger.com/profile/10086881781904871494noreply@blogger.com0tag:blogger.com,1999:blog-6668929193420439522.post-16330007651984359652014-06-04T10:03:00.000-07:002014-06-04T10:03:33.675-07:00Mommy's TurnIt's been six days since I had surgery and I've had a lot of time on my hands to think, so I wanted to document this event, and how it relates to Miss Avery. A little background first. My surgery was to correct severe diastasis (separation of the abdominal walls from pregnancy), as well as a large hernia sac above my belly button, and another umbilical hernia. And I decided to throw on a tubal ligation just in case the other stuff wasn't painful enough. Since I had Avery, I've felt like my organs were being pushed forward, through my abs, and I was precisely right. After learning it was a hernia and diastasis, I tried to do exercises to "flatten" it out, but quickly found out that was not only pointless, but making it worse. The only answer would be surgery, unless I wanted to live with it inevitably getting worse. In many cases, it doesn't require treatment, but mine was pretty bad, and left untreated, could eventually strangulate, and also leave me looking 5 months pregnant for the rest of my life. And my surgeon (who I love, despite his blunt and dry humor while referring to your body) pretty much summed it up when I asked him what stage of diastasis I had and he replied, "you're beyond stages." and "I've seen women with twins who don't look this bad." It was a big decision to make, being that I'm kept very busy by two little girls, John doesn't have a lot of time off, and the recovery is pretty annoying (no lifting for 6 weeks, no driving for 3, etc.). But, thanks to my incredible family, who are taking time out of their lives to help, I could get it out of the way. My biggest worry was Avery having a shunt malfunction or eye issue in the midst of all of this. I hold my breath each morning as I listen to her on the monitor, willing her to be okay. Sounds crazy, but all the hydro moms will relate.<br />
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Before this surgery, I had gone through two c-sections, which in my opinion, were a breeze. I thought my tolerance for pain was super high, so I got cocky, didn't really take the warnings about this one seriously, and I assumed everyone telling me that it would be far worse than a c-section was just a wuss. Well, it turns out, I'm not so tough after all. That hurt like <i>hell</i>, and I humbly admit that I am the wuss. I have handed my daughter over to surgeons time and time again, and when I hold her afterward, I can only imagine how much pain she's in. My respect and awe for Avery is at an all-time high, knowing now, firsthand, what the body goes through after anesthesia and major surgery. And my surgery wasn't even earth-shattering - it wasn't nearly as serious as Avery's brain surgeries, or as delicate as her eye surgeries. It wasn't like many other people's, which are accompanied by a horrible diagnosis, or necessary to save their life. But I've experienced something vaguely similar to what my child has gone through, and I have so much more admiration for her resilience and strength. I also have so much more respect for everyone who goes through worse. I saw a woman in the pre-op waiting room who had cancer, and I assume was there for surgery related to that. She looked so nervous, and her husband had his arms around her while they waited to be called back. That will surely remind you to keep your perspective and be grateful for why you are sitting in that waiting room. I also saw another patient, about 2 years old, and was reminded to be thankful that we weren't there for Avery this time. She was home with Papa, doing great and healthy. You get pretty sappy when you're about to go through something like this.<br />
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One of the biggest cautions I got about this procedure (after the pain!) was about the large scar I would have afterward. Sure, I can see how this would be disheartening to some women, who wear bikinis on a regular basis and who have never gone through anything traumatic before. The scar to me is not a bad thing. It's another souvenir from having two wonderful, amazing little girls, and a reminder that while pregnancy does a number on your body, I was lucky it could be fixed. When I brush Avery's hair or give her a bath, I see many scars on her little body. What kind of mom would I be if I treated scars as something ugly or bad? They are part of her journey, as this one is now part of mine. So while I appreciate their warning, it's the least of my worries. I was much more worried about not being able to hold my babies for six weeks, not pull my weight around the house, and having to give into the help of others while I get back to normal. But as I've been reminded by many this last week, in the grand scheme of things, six weeks isn't a big deal.<br />
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This week has been difficult physically, but it's also been the most productive week I've had in awhile. It's amazing how much you can accomplish with an ipad, a cell phone, and no kids hanging from your legs! I've gotten a ton of prepping and planning done for my sister-in-law's upcoming wedding, and I answered emails and calls that had been put on the back burner. And, although late to the game, I finally learned what all the fuss is about Pinterest! That force will pull you in for <i>hours </i>if you don't have anything else to do but lay in bed. To wrap up, here are some other things I've learned this past week:<br />
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1. You (unfortunately) use your core for everything... <br />
2. Including laughing, so don't watch an Office marathon while recovering from ab surgery.<br />
3. A shower is an amazing treat that shouldn't be taken for granted!<br />
4. Percocet is not all it's cracked up to be. I'd make a horrible drug addict.<br />
5. If someone told us how real our marriage vows would be; "In sickness and in health," John may have fled the scene.<br />
6. As I've noted above, Pinterest is highly addictive. Much more addictive than Percocet.<br />
7. I don't need to leave the house to incur damage to my bank account. It's worse, even.<br />
8. Ten minutes of sunshine can turn your mood completely around.<br />
9. I cannot comfortably sleep propped up against 3 pillows, on my back, for longer than one hour.<br />
10. I married the most incredibly generous, caring, loving, selfless man on the planet. He's been the best nurse anyone could ask for, and I couldn't have done this without him.<br />
11. Avery is the toughest girl I know, so much tougher than I, and I'll never forget that!<br />
12. Being superstitious isn't crazy. This one is for us to remember when we're reading this years from now and recall the freaky things that happened during our journey with Avery ... We learned in the week before Lucy was born, that Avery's medical issues can pop up and scare us during the worst possible times. So my worry before this surgery was very much warranted. I got so paranoid after that time, that I insist on two, superstitious things - always keeping Avery's "barf bucket" in her room, because the day we take it out, she'll get sick. It's been behind her bed (clean) for eight months. The other thing is I have to have Avery's video monitor next to me while I sleep. The only two times I didn't have it in the last 6 months, she barfed in the middle of the night. While it didn't turn out to be shunt-related, it is still a scare. Whether you call it Murphy's Law or superstition, I'm sticking to these two things. Because... the night after my surgery, when I was a complete invalid, John was so busy he forgot to turn the monitor on. And what happened? Avery puked in the middle of the night and we spent a few hours that morning wondering if it was her shunt. So I'm not superstitious, but I'm a little stitious :) (Michael Scott, The Office... I've been watching a marathon, ya know.)<br />
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<br />Ann Devereuxhttp://www.blogger.com/profile/10086881781904871494noreply@blogger.com0tag:blogger.com,1999:blog-6668929193420439522.post-35739917988816026842014-04-13T18:06:00.001-07:002014-04-13T18:06:46.908-07:00Avery is 4!I know I am repeating myself, but Avery has come so very far in one year. She is in a much better place today in all aspects of her life - she's healthy, her corneas have survived (for the most part) for over a year, her shunt has held up for 7 months and she's moving along developmentally too. She's learned how to walk with a cane, and is (finally!!) talking more and more each day. <br /><br />
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When Avery was born, we were told she would see only shapes and shadows, and after her first brain surgery led to meningitis, we were told she may or may not meet milestones, and there was no telling how she would develop. Thankfully, she has done far better than those original prognosis, and although her future is always unknown, her life so far has been better than we ever anticipated four years ago.<br /><br />
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We are so proud of her progress, and made this video to recap the last crazy, amazing, fun, challenging, roller coaster four years. Happy Birthday, Avery - we love you more than you'll ever know.<br /><br />
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<br />Ann Devereuxhttp://www.blogger.com/profile/10086881781904871494noreply@blogger.com2tag:blogger.com,1999:blog-6668929193420439522.post-14910808266728397562014-03-30T17:53:00.000-07:002014-03-30T17:53:01.243-07:00Goodnight SunnyI don't keep a baby book for Avery, so when she does something cute it's going on her blog!<br />
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Tonight, I was about to take Avery upstairs for bed, so I told her to say, "goodnight, daddy." She has transitioned over the last year from just kissing daddy goodnight to now actually saying, "guh-nah, daddy." But tonight, she took the initiative to say goodnight to everyone and everything. We cracked up as she kissed her toy house, then crawled onto the couch and kissed the window, "goodnight, sunny!" Then onto the lamp, sissy's swing, sissy's bouncy chair, Diego and then finally her potty chair. It was not only one of the sweetest things I've seen her do, it proves how well she's doing verbally and cognitively. So love that little girl.Ann Devereuxhttp://www.blogger.com/profile/10086881781904871494noreply@blogger.com0tag:blogger.com,1999:blog-6668929193420439522.post-27907910937421915902014-02-08T18:47:00.001-08:002014-02-08T18:47:29.397-08:00One yearToday we are celebrating a HUGE milestone. Avery's left cornea transplant is one year old, and still clear. This is like another birthday to a transplant recipient, so we are treating it like one! Cake, candles, and pictures, of course :) While the one year mark doesn't give us immunity from future issues, it does get us over a typical hurdle in terms of her body continuing to accept the transplant. If we continue to have failed grafts, we have little options as far as saving her sight, so this is a really big milestone, and honestly, one that I didn't see coming. As I have said before, it's very hard to remain optimistic when you see failure and disappointment time and time again, but this one proved me wrong, thankfully.<br />
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<span class="Apple-style-span" style="color: #181818; font-family: georgia, serif; font-size: 14px; line-height: 18px;"><i>“Those who don't know how to suffer are the worst off. There are times when the only correct thing we can do is to bear out troubles until a better day.”</i></span><br />
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One year ago today, we were staring down the barrel of one of the hardest years of our lives. This was attempt #6 for a cornea transplant, which in our world, isn't super promising. If that wasn't enough, her brain shunt was malfunctioning, and John and I were up every hour at night readjusting her as she slept to keep her head elevated. I was also in the midst of first-trimester sickness. I was scared, angry, frustrated, and exhausted in every sense of the word. And it didn't get any easier. New transplants bring a ton of baggage with them, and keeping up with all of it with a small child is no easy task. They are extremely vulnerable, especially for the first few months, but continue to be for a long time. They require constant care, protection, and 'round-the-clock medication. Conveniently for us, we were already up around the clock due to her shunt issues, so peeling the tape for her eye shields off every couple hours to do drops was just added to the list. Plus, at that point, we were seasoned veterans. The very first Peter's Anomaly mom that I ever met told me, "it will eventually get easier, not because they are cured or get better, but you get used to it and that makes it easier." This is so true. When I look at things I handled last year versus when Avery was a newborn, it's like night and day. Even the simplest thing like eye shields at bedtime. I used to cry over the fact that we had to tape metal shields to our baby's face - it chapped her skin, made her poor little cheeks red and pulling it off was torture - for her and us! But now, nearly four years later, Avery just lays there and says "on" and "off" when we do them, and we don't even think about it anymore. (Although learning about gentler kinds of tape definitely helped!) Practice makes perfect, and sometimes you're unfortunately practicing things that really suck, but you get better at handling them. THANK GOD. Don't get me wrong, I had many a breakdown last year, and if you were a fly on the wall at my house, you probably wouldn't think I was handling it very well, but in the grand scheme of things, I'm pretty impressed with the three of us. That surgery one year ago was the first of four major surgeries for the year. In between, there were countless other struggles. One year ago, I thought our lives were unraveling at the seams.<br />
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But today, in this moment, I feel like all the stars are aligned. Funny how life is. It will knock you down over and over, but while you're down, you remember the times like these to keep you getting back up. Avery is doing better right now than she ever has. Her health has been great since September. This one year milestone is one she has not previously achieved. If we're really lucky, we'll celebrate another (her right cornea) on March 21st, and if we're lottery-winning-lightning-striking-twice-lucky, we'll celebrate another (one year since her last shunt revision) on August 14th. Developmentally, we're ecstatic with her progress. If you keep this kid out of the hospital for longer than a few weeks, she'll impress the heck out of you! Between the span of time since her last surgery, her awesome team at school, and having a sister to make her more independent, Avery is growing by leaps and bounds. She's saying a ton of words, using her cane like a pro, and mastering all the letters, shapes and colors. I'm beyond amazed by this girl every day, and she's my number one inspiration. She's defied so many odds, and does things that we never expected her to do. And thankfully, we never take one of those things for granted. We sit back in amazement, smiling ear-to-ear, each time she says a new word, or recognizes a color, or gives her sissy a toy to keep her from crying. If you would have told me one year ago today where we'd be now, I would have been so incredibly relieved. But that is what keeps you going - the knowledge that anything is possible and whatever hellish situation you may be going through at any given time is probably temporary. <br />
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We are so proud of Avery, we need a new word for "proud." She continues to be an overcomer, and her positive light is seen by everyone around her. Happy One Year, and here's to many, many more! <br />
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<i>(Last year, her failed grafts were very cloudy and she had a lot of trouble getting around. She put objects right up against her eyes to try to see them and she ran into a lot of walls :( And the most tell-tale sign: no red reflexes from the camera flash. Now today, her new corneas are clear, and as you can see, the reflexes are visible!)</i></div>
<br />Ann Devereuxhttp://www.blogger.com/profile/10086881781904871494noreply@blogger.com0tag:blogger.com,1999:blog-6668929193420439522.post-58384668095137380162014-01-10T07:40:00.003-08:002014-01-10T07:40:49.380-08:00Special MomentI had one of those moments this morning with Avery when I just wanted to press the pause button on my life and keep things this way forever. It was a simple thing, but one of those life moments that are so special and precious that you, the parent, know how valuable it is. She's been doing really well lately on mimicking sounds and she makes an attempt at pretty much any word you ask her to say. This is huge progress from even the summer and we are so excited. <br />
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She has recently found it funny to repeat sounds or exclamations such as "oh yeah!' or a silly laugh, snort or noise. I did one of these laughs this morning and she kept repeating it, followed by giving me an eskimo kiss, which she also just learned to do. She let out big belly laughs and gave me those huge, Avery smiles each time I made the noise, and she tried her hardest to match it. Then she would play with my hair and rub my face, because she loves when I say, "mama's hair, mama's face." I'm sure many parents understand this feeling - when your child learns something new, and is so proud of it that they want to do it over and over. Plus, I got the feeling that she was so happy to play a game and get full attention from her mommy, since that isn't always the case with a new sister around. This back-and-forth exchange was so simple when you compare it to most kids, but to me, it's a big deal. It shows she sees, she is learning to mimic sounds, and she's cognitively more developed. This reaction to my funny laugh will probably come from Lucy when she's 12 months old, and Avery is approaching 4 years in April. This is why these moments are so very precious and I have a celebration inside each time they happen. Because we worked so very hard and waited so very long to get here. <br />
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I just had to include this entry so I could look back some day when things are bad, and remind myself of this special moment.Ann Devereuxhttp://www.blogger.com/profile/10086881781904871494noreply@blogger.com0tag:blogger.com,1999:blog-6668929193420439522.post-83785264803839032282014-01-03T09:13:00.000-08:002014-01-03T10:57:45.627-08:00Secret SantasAs this blog serves as documentation of Avery's journey, we have to include a HUGE surprise our family got this Christmas. Our dear friend, Jen Satchell is one of the sweetest people you'll ever meet. She's always thinking of us and Avery; for every single surgery or major appointment that she had this year, I received an encouraging text message from Jen, which is truly the best thing anyone could do for us. She did not stop there, though! She let us know a few weeks ago that her team at work "adopts" families each year for Christmas, and she had not only nominated us, but we were chosen. We didn't really know what to say - we were so touched and speechless, actually. Our family and friends have done so many generous things for us since Avery was born. We always say that we don't need anything but their good thoughts, prayers, and the occasional call to let us know they are there. Regardless, we've been gifted with meals, had our lawn and snow taken care of, our dog cared for, toys and books for Avery, flowers, money toward college, medical expenses and even for our cord blood banking (just to name a few!) We are so appreciative of everyone's kindness and generosity, even though we think it's <u>too much</u>! Our way to return the favor is to continually look for ways to help others, including all of the dear people in our lives, if they ever are in need. We never thought we'd be in the position of caring for a child with chronic medical conditions, and even though we could handle everything without a single act of kindness, it definitely makes the hard times easier when you know you have such an amazing support system.<br>
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This Christmas, the support system included a team of wonderful people from Flagstar, who have never met us, but wanted to help us anyway. For that, we cannot be more grateful. On the evening of December 18th, we were surprised with several boxes of gifts for our family. I told Jen that I felt like we were on Ellen or something. We are still blown away and it only reminds us to stay positive, and to continue to help others in every way we can. Because everyone is going through something and everyone needs to know that they have people out there who care about them.<br>
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Thank you again to the team at Flagstar, and especially to Jen. I've included a video of our girls saying thank you as well! We wish you a happy, healthy new year!<br>
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Love,<br>
The Devereuxs<div><a href="http://youtu.be/Osx-Glle_vQ">http://youtu.be/Osx-Glle_vQ</a></div><div><br></div>Ann Devereuxhttp://www.blogger.com/profile/10086881781904871494noreply@blogger.com0tag:blogger.com,1999:blog-6668929193420439522.post-33782317132740711752013-12-06T08:36:00.003-08:002013-12-06T08:38:38.555-08:00Appreciating the little, big thingsLucy is just over two months old. We had her two month check-up this week and the pediatrician told me she's "perfect" - doing everything she should be doing, if not more. As she checked Lucy's eyes with the light, I smiled and knew how precious it is that she can even do that part of the exam. Lucy's pupils shrank, and the doctor saw two bright, red reflexes, no problem. <br />
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At this point in Avery's life, she was barely getting over her bacterial meningitis infection, and we were being told that her new cornea transplant was failing before it even had a chance to work. We were just starting therapy to get her to learn to turn her head toward a light, or to bring her legs to an noisy object so she would be aware she could kick her legs. Avery was completely blind and as cruel as it sounds, was basically behaving like a slug. I am aware that two- month-old babies don't have a completely developed vision system, and they are not seeing very clearly. The pediatrician and eye doctors assured me of this over and over when they examined Avery. However, I'm now aware that they were just trying to make me feel better. The difference between Lucy's vision at two months and Avery's is incomparable. It is glaringly obvious that Lucy sees - she smiles at the sight of our faces, she tries to bat at the toys hanging from her gym, and she turns toward me as I walk by her. I can move a toy over her head and she tracks it. It's an amazing experience that takes my breath away <u>every single day</u>. John and I still think "so this is what it's supposed to be like!" It's a feeling you could only know if you only ever had a baby who did not do what they "should be doing." And I'm grateful to know this feeling because I wonder if I would just take all these milestones for granted if I never had Avery. If I never knew how it feels to have these things absent, would I appreciate so much that they are happening, so easily, every day with Lucy? I feel like I get a gift that many moms don't. It also makes me appreciate and respect people like my dear friend, Joanna, who like many other special needs moms, had her "typical" child first. She knew what her baby "should be doing" and every day had to look at her second born daughter, with Peter's Anomaly, who was clearly not doing those things. I can imagine that instead of feeling relief and joy every day, like I am, she felt scared and so sad. I can also now appreciate even more all my friends who had their special needs baby first. We were hit with moments every day of our second pregnancy when the fear of "it happening again" paralyzed us. And when the baby is born healthy, we were overcome with so much relief and happiness, words will never describe. It's just an incredible feeling that you have every time you look at your healthy child, or experience them meeting a milestone that your first child did not. <br />
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Many times I also feel guilty for being so happy about how easy and typical Lucy is. Neither we nor Lucy have to work as hard as we did with with Avery. She eats, sleeps, poops, plays. That's it. Besides her little stint in the hospital, she only has to go to the doctor for routine visits and shots. And not to minimize the experience of watching your baby get a shot, but .... it's not a big deal. If you never had to see your baby go through anything worse, then I can see how it may be traumatizing. But let me assure you, it's not. They don't even remember it 2 minutes after it happened. As Lucy was getting her three pokes this week, my exact thoughts were, "aww, she looks so cute hysterically crying!" Again, that may sound harsh, but only a mom who has seen what I've seen would understand that shots are no sweat. This second experience is a completely different one than my first, and has made me a different kind of mom. I have to learn how to juggle my two completely different children, and as they get older, learn to take both of their feelings into consideration. Lucy will feel like we favor Avery since she'll require more time and attention. And Avery may feel jealous of Lucy, who doesn't have to struggle with the same things or feel different from everyone else. Our lives will continue to be challenging, and I'm sure there are things that lie ahead that may suck more than what we've already gone through.<br />
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But in keeping with my "take it one day at a time" mantra, today I'm grateful for the gift of appreciating that in their own different ways, both my girls are looking at me, smiling, and doing what they should be doing.<br />
<br />Ann Devereuxhttp://www.blogger.com/profile/10086881781904871494noreply@blogger.com0tag:blogger.com,1999:blog-6668929193420439522.post-52589400048902191682013-10-23T08:21:00.000-07:002013-10-23T08:21:17.436-07:00What else?/Welcome LucyI know this blog is mainly about Miss Avery, but I have to welcome her new sissy, Lucy Vivian to the world. She was born on September 27th, and has brought us so much joy during a very challenging year. While we've had plenty to worry about besides Lucy's health, the fear of her being born with Peter's Anomaly or some other issue was always in the back of our minds. We held our breath as we waited to see her for the first time - since I had a c-section, we had to wait what felt like hours before they brought her over to me. We joke that she knew we were worried about her eyes, because she opened them for the first time when we got her, and kept them wide open for a really long time. What we saw I will never forget - crystal-clear corneas over her brownish-gray eyes. I am still amazed every time I look at her. Bright, red reflexes, no glaucoma and healthy retinas. We are so grateful for this, and the fact that everything else about her from her head to her toes, checked out totally healthy. We got the experience we never had with Avery; to have our newborn stay in the room with us, not hooked up to monitors or tubes. No bad news, no specialists, no sad tears. It was a totally typical experience, and we treasured every moment of it. <br />
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Like most new parents of two, we haven't been out much or spoken to a lot of people since bringing Lucy home, but it hasn't been a very easy month. When we do talk to anyone, we get the same reaction; "wow, you guys really can't catch a break!" And that's really what it seems. Practically since we rang in this year of 2013, we've had our bumpiest year since the year Avery was born. Most recently, Avery's had several weeks of illness that left us guessing each day if her shunt was to blame. Once you see your child wake up vomiting and lethargic and it leads to brain surgery, you will always associate those symptoms with brain surgery. No matter how many times the doctor tells you it's just a virus or it's common for kids in school - it doesn't matter. The memories of those symptoms leading to something serious are impossible to shake. So, with how often Avery has been sick over the last few months, we are constantly guessing what the reason is, and hold our breath each day to see what shape she'll be in. I started marking sick days on the calendar, and we are currently in our longest streak - one full week - (knock on wood) since July. There was so much going on in our lives in the week leading up to Lucy's arrival, but Avery being sick was the worst. Leaving her to go to the hospital was so hard, and thankfully nothing serious ever happened. <br />
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In addition to Avery's touch-and-go health, we have dealt with several other things. While I don't want to go into all of them, each one has challenged us in every way possible and taught me (if I didn't know it already), that we really can handle anything. I keep thinking that if one more thing happens to us, I'm going to fall apart, but I know deep down that I will not. Life keeps handing us challenges, and we keep dealing with them as they come. And we know it can be worse, so that's always in the back of our minds.<br />
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One of those things was Lucy's illness last week. When we brought her home, all perfect and healthy, we never imagined we'd be back in the hospital with her just two weeks later. But that's where we ended up last Tuesday night, after a long day of her acting sick, and eventually her fever went up to 103. We assumed she had caught it from her sister, who had become a walking germinator. We were warned that because of Lucy's age, she'd have to be tested for everything and be admitted. While we aren't strangers to watching our baby go through spinal taps and have blood drawn, it's still very painful to watch. We were told that the protocol for a newborn with a fever is all these nasty tests, plus putting them on proactive antibiotics. Which - sidenote - was NOT the case three and a half years ago when we brought Avery into the ER with a fever at 7 weeks of age. And she had had brain surgery with a leaking incision! We are very angry about learning this "protocol," because if Avery had received proactive antibiotics, she may have never developed meningitis, which is why she's going through all of her neurological issues today. (We have definitely stored that information for use later.)<br />
Anyway, we found ourselves bunking at the hospital once again, only for poor Lucy this time. We had made plans for what we'd do with Lucy whenever Avery is in the hospital, but didn't really plan for the other way around. We haven't really told many people until now, but the final diagnosis was rhino-enterovirus that spread to Lucy's spinal fluid, which made it a viral meningitis. When I heard the doctor say this, I turned white. The word, 'meningitis,' is a four-letter word in our house. John wasn't at the hospital at the time, so I had to process this alone, and I proceeded to ask the doctor one. million. questions. She assured me that this was a totally different kind of meningitis than Avery's. It's actually the least serious, and they have to call it meningitis simply because where the virus spread to. Newborn's immune systems are underdeveloped, so they can't contain a virus like ours can. They assured us it's not uncommon, and very easy for her to get. But still, we were shocked and felt extremely guilty. How the hell can we end up with both our kids having a form of meningitis? We may have a cluttered house, but we sanitize, we wash our hands - we aren't dirty! After the doctors assured us over and over that we can't blame ourselves, we still do, but that's part of being a parent. Luckily, Lucy made it through her stay with minimal issues, and we were discharged two days later. I hope that was her last hospital stay. And Avery was happy to see her sissy home again, even though it meant that I follow her around 24/7 with sanitizing wipes.<br />
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We had also found out on the day that Lucy was born that my Grandpa Johnson was diagnosed with colon cancer. It had spread to other organs, and he was put on chemo pretty quickly. The day we came home from Lucy's hospital stay last week, we sadly learned that he had taken a turn for the worse. I was able to be with my family over the weekend and see him one last time, but he peacefully passed away yesterday. Our family won't be the same without him. He was a great guy, and I'm lucky to have been able to call him my grandpa. Your "Annabelle" will miss you, Grandpa.<br />
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John and I look at each other a lot lately and know what each other is thinking; "what the hell?" - but like I said, we just keep on going. While these events are the main issues, we have had many other things working against us lately, and testing our strength. I'm proud of us, but also hope that we are done being tested for a long time. I used to wish for a crystal ball, but lately, I don't really want to know what's around the corner. I will just know that we will deal with it and take one day at a time. I never thought I'd accept that cliche, but I don't really have a choice! For today, I'm grateful that we reached one week of Avery being healthy and she's even eating like a horse. Lucy is growing and back to healthy too. The sun is out. Not thinking beyond those things.<br />
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Ann Devereuxhttp://www.blogger.com/profile/10086881781904871494noreply@blogger.com0tag:blogger.com,1999:blog-6668929193420439522.post-23977191222893864442013-08-27T14:10:00.000-07:002013-08-27T14:18:14.267-07:00Keep Calm and Be Brave"Keep Calm and Be Brave" was the line I thought appropriate for our team, "Avery's Bravery" at the Hydrocephalus Association's Detroit Walk this past weekend. I came across the event about a month ago, and couldn't pass it up, even though our free time is running on empty these days. We've always tried to stay involved in the organizations related to Avery's disorders, whether it be her eyes or brain, and doing so puts some positivity on a negative situation. Plus, feeling part of a community of other families dealing with these issues is so important. For it being a last-minute decision, the walk turned out great. We raised $365 in four weeks (with minimal "soliciting" of friends and family), so I'm sure next year we can do so much more...plus make those fun team t-shirts I wanted to have so bad :) I really appreciate all the donations we received, and for our other team members who joined us to walk. Hydrocephalus Association is the largest Hydro NPO in the world and raises money for research toward the advancement and improvement of shunts, and coming up with better solutions for this disorder. For how common and serious a disorder it is, there haven't been major strides in how it is treated, which is why patients like our brave one end up in the hospital so often with malfunctions.<br />
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It also came in perfect timing, as Avery's wound is still new from her latest surgery two weeks ago, and our emotional wounds gave us even more motivation to help this cause. That day was another scary one turned into a surgery - number 21. It's hard to believe that my poor baby has gone through that many surgeries, not to mention countless times under anesthesia, and radiation from CT scans and x-rays. I wish I could say it gets easier, but it just doesn't. The hardest part for us now is Avery still cannot communicate well when "it hurts," and we can't make her understand that everything is going to be okay. I always wonder what she's thinking when she gets sick like that. She has to be scared as she's in quite a bit of pain, and looks to us to make it go away, when we just can't. I'm comforted by her resilience, but so sad that she has to go through this so often. This year has been so hard on her, and she so deserves a very long stretch of time without surgery. And I'll say it, John and I deserve a break too. Our lives are so unpredictable and full of worry, and I'm ready for the rest of this year (at least!) to be healthy and surgery-free. For one last time I'm going to get my infection worries off my chest. I figure if I talk about it enough out loud, it won't happen. I am sure if I've talked to you in the last two weeks, you've heard me talk about it! The surgeon and his staff told us the infection rate has been high this summer, and each time Avery's opened up for a surgery like this, she's thrown into that mix, and the risk exists for up to 6 months after surgery. The only thing we were told to do was keep the incision area clean and keep her hands clean. Everything else is out of our control. So I took that advice very seriously - probably too seriously - and wash her, plus everything else that could potentially infect her head, often. I know that I shouldn't stress so much about it, as most of it is out of my control, but the reality of a shunt infection scares me so badly. If it happens, the doctors have to remove the whole shunt (which runs from her brain down to her abdomen), then temporarily drain the fluid externally into a bag at the hospital bed. Then it's two weeks or so of IV antibiotics, followed by installing a brand new shunt. And that's just if everything goes as planned. Pretty much one of my worst nightmares.<br />
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<tr><td class="tr-caption" style="text-align: center;">Day after surgery</td></tr>
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However, my goal is to stop dwelling on what I cannot control, because that's the only way to get through all of this: minimize worrying, brave up, and literally live one day at a time. We never know what the next day will bring us, so best not to run the list of what could happen. Avery is brave, so there is no excuse for me not to be. We are learning more and more each time what signs to look for, and how to "read" our daughter. At times, I probably over-read her, like yesterday, when she spent the whole morning crying for no particular reason, and nothing could console her. However, she was eating and not throwing up, so my experience told me it probably wasn't her shunt. Regardless, I needed to rule out the benign stuff, and just in case, had her checked out for something like a UTI or virus. She doesn't appear to have either, so that behavior is a mystery still. The constant guessing game does get tiring, but we can't take any sign of illness for granted. Our first reaction is never "she's just being a three-year-old," or "she's probably just coming down with a cold," but we hope each time that this is the case. 99% of the time, it's been her shunt, so we go off our previous experience. I am looking forward to the day when she can communicate better with us so it's less guessing. One of her therapists pointed out recently that with Avery's delays, it often feels like having a one-year-old for three years. Which is so true. There are days I love this because her "baby" years are being extended, along with all the good things that go with them. But that also gets hard, worrisome, and frankly, very <i>old</i>, especially when it comes to communicating her needs. But, we're working on that. One day at a time. And she will get there.<br />
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Although the worry of our situation can often be debilitating, I need to focus on the positive as well as get geared up for Baby #2, who is coming in (no sooner than, we hope!) ONE MONTH. Yikes! Nesting has fully set in, and my poor husband is working tirelessly on our never-ending Project: Finish Basement/De-Clutter House of Toys. It has been hard to focus on (and be genuinely excited for) the impending arrival with everything else going on, but we've managed to sneak in some baby shopping trips and finishing up the nursery. And my heart melts when every time I ask Avery whose room that is, she says, "sissy." We are very excited to add another little girl to our family, and we pray every day that she is healthy, healthy, and....healthy. But, if there is an issue, we will get through it, because we always have. We knew we were taking on somewhat of a risk in having more children, but we knew we wanted to give Avery a sibling, and are relying on faith and hope that everything will be okay, no matter what. As the date gets closer, I am getting more emotional about sharing my time across two children, which I hear is normal for second-time moms. I probably won't understand until that baby gets here how it will all work out, but I'm pretty sure all the moms I know figured it out. I will admit, I'm scared to death about having a second child at home when Avery's in the hospital, but again, I know it will work out. There are days when I feel like just having Avery is like having triplets, between all the appointments, at-home care, therapy, insurance and other paperwork, and the setbacks that make our lives stand still for days at a time. So, hopefully having her first will make having a "typical" child now seem like a breeze. Hopefully. And for those of you who don't know, I have stopped working (as of Avery's last surgery) for an indefinite amount of time. The decision is the result of many, many factors, but the bottom line is, this is what's best for our family and I'm thankful that we can make it work.<br />
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In addition to trying to be positive and present, I'm also trying to be more faithful. I admittedly lost a lot of my faith in God after Avery was born, but I'm trying to get that back. I ask, as I always do, for you to please say a little prayer (or positive thought if you don't pray) for Avery to stay healthy, and for her sister now too. We cannot say how much we are grateful for this from all of our family and friends (and a lot of strangers too). We'll keep you posted on baby 2! <br />
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<br />Ann Devereuxhttp://www.blogger.com/profile/10086881781904871494noreply@blogger.com0