Tuesday, August 27, 2013

Keep 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.

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.
Before surgery
Day after surgery

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 old, especially when it comes to communicating her needs.  But, we're working on that.  One day at a time.  And she will get there.

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.

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!



Saturday, August 3, 2013

Great Glasses Play Day!



August 4th is Great Glasses Play Day... We were asked to post a video interviewing Avery about wearing glasses, but this is our alternative since she can't talk :)

Avery started wearing glasses at 4 months of age. 

Her glasses improve her vision from approx. 20:1000 to 20:400, so they are a BIG help!

She has had four different pairs (but we love pearl pink Mira-flex the best!), and two pair of prescription sunglasses.

She's very good about wearing them - and we are very grateful for that!!