The craziness that is 2015 ensued right away in January, with the first time I had to call an ambulance for Avery. It was a combination of extremely low blood sugar and a seizure that threatened to take our baby away from us that day. As a parent, you never shake the memory of that, and the fact that this wasn't the first time, nor the last, makes it even more traumatizing. It will stay with me forever, and it adds to our daily vigilance. From that hospital stay on, it's been a constant ride on a hamster wheel. We added a neurologist, endocrinologist, retina surgeon and psychologist to her already long list of specialists. And the appointments! Oh the appointments... I feel like I have lived inside a doctor's office for most of 2015. Many months, averaging two and three times a week, all to try to determine what is going on with her. In late spring, we noticed her right cornea was starting to fail. And the day it was confirmed she'd need her 8th re-transplant, we also took a fun trip to the dentist, and were shocked to learn she had a malformed molar that needed surgery. So the chaos continued.
The summer was spent continuing to dive into her endocrine issues, as well as her developmental issues. We walked away with a confirmation that she does not fall on the Autism spectrum, and a better understanding of how her noggin is functioning. But the cold, hard reality that she has a diagnosis of diffuse neuronal dysfunction, aka, "slow brain activity," and a global developmental delay. This is all stemming from the meningitis infection she had as a newborn, and all her subsequent brain surgeries and issues. This didn't change anything, but to see it written on paper is extremely difficult. It fuels our motivation to keep working with her on a daily basis, and immerse her in as much learning and therapies as she can take. And honestly, she's doing better than anyone ever expected.
As I explained in a previous post, August greeted us with one of our worst eye-nightmares: a detached retina. The first two weeks after learning this news were insane, spent on the phone, begging to get into the best doctor sooner than they had scheduled, and basically keep ourselves from completely losing our minds. If I only knew that it was just the beginning of an excruciating fall and winter. The day of the planned retina repair, the doctor found that Avery's cornea (only a few months old) was already failing, and because of which, he couldn't get a proper view of the retina to repair it. Two days later, we were back, plus one cornea surgeon, for a five-hour surgery to re-transplant the cornea and repair the retina. He explained that it was now a waiting game, and completely in God's hands. We love that doctor - he is another really empathetic guy and took a lot of time to explain all scenarios to us. If you can't feel a sense of comfort with these guys, you're in a bad spot, so I'm grateful for all of our good doctors. And those who haven't been, have been replaced...
Since that day, the right eye has been on a downward spiral. We faced a sudden cornea rejection in late October. One day it was fine; the next day it was not. And when that seemed to turn around, they found that her pressure was not responding. You need a certain range of pressure in the eye for it to survive. Too high is glaucoma, and too low is hypotony, which is what Avery has been experiencing since her retina surgery. They believe that the membrane that produces fluid may be permanently damaged. After 5 1/2 years of constant, relentless fighting for this eye; an eye that has seen the most surgeries of anything, we learned a few weeks ago that we reached the end of the road. We sat across from Avery's Ophthalmologist, after he had just finished a procedure that he didn't feel would work, and he said the words we dreaded since we first sat across from him 5 1/2 years ago: "I'm sorry, but I don't see the eye recovering." He put his hand on my hand and assured us that we have done all we can, and fought quite a fight. We are now facing "putting the eye to rest." It was a slow build-up to this point, with so many obstacles along the way, but we never imagined we'd be facing this this year. It's been like grieving a loss. And with her "good" eye being not-so-good, we are closer to the possibility that Avery could one day lose all remaining sight. But for now, we take one day at a time, and make the most out of the days she does have sight.
During all of this eye drama, Avery was being tested for growth hormone deficiency earlier this fall. Anyone who knows her, knows she's tiny. At the time of the testing (at 5), she was standing just under 3 feet tall and only 25 pounds. That's like a small 3-year-old. So they were trying to determine if it was an endocrine issue. The results were not what we expected (shocker). Avery did have sufficient growth hormone, which meant we didn't need to inject her with it on a daily basis (good news). However, her blood work showed that she had virtually no cortisol (bad news). This is the fight-or-flight hormone, and is necessary to deal with physical stress and illness. Her body wasn't producing it. At the time, she was not symptomatic, but if she encountered any surgery, illness, car accident, shunt issue, etc., she'd require medication to survive it. Once again, I felt like the floor was dropping out from under me. I know many of those scenarios are inevitable for us, so facing another life-threatening, medicine-dependent diagnosis was so overwhelming. We are so thankful we did that original test, though, because we were able to prepare ourselves over the craziness of this fall and winter for adrenal failure issues. The likely culprit is her life-long dependency on topical steroids for the cornea transplants. Steroids can impact the body's creation of cortisol, and not only does Avery take them in her eyes, she had just started on a new one for alopecia (yeah, another new issue). I always had this nagging suspicion in the back of my mind about her steroids, but was assured that there was not literature to support topical steroids causing any major issues. But it all started to make sense with the diagnosis of adrenal insufficiency; her small size, her eating problems, etc. Then a few of my Peter's mom friends were talking about the same issues in their children. We hope to have her added to a case study so there is literature for future kids with similar symptoms.
When the cornea started to reject in October, the only way to stop it is to do continual steroids. Before the words were coming out of the cornea doctor's mouth, my brain was going 100 miles an hour trying to figure out how we were going to do this. With the consultation of many of her doctors, we found a regimen to be able to increase steroids to try and save the cornea, but keep her healthy. She started taking a pill three times a day to make up for her body's lack of cortisol. But if she gets sick, seriously hurt, or requires anesthesia, she needs a "stress dose" of the medicine. And in very serious cases, we now have a shot (kind of like an Epi-pen) that goes in her leg. We spent several hours at the endo office that week, learning how to see signs of adrenal failure, how to give the shot, and different scenarios that we could face. "This is all manageable, but when adrenal crisis starts, the child will deteriorate very quickly." That line sticks with me every day. And we've already seen it in action. This adrenal issue has caused quite the drama over the past 3 months. We've made about 50 calls to the endocrinologist, two emergency trips to the ER (one while in Chicago), and we've already had to administer that shot. Which was another traumatizing day.
The toll that this year has taken on us has been significant, but we have managed it. With each incident, we learn a little more, and get a little stronger. John and I were sitting up one night recently, recovering after about 5 days of the girl's having the flu, and "how are we going to finish our to-do list before Christmas?" And as we reminisced the monstrous year we've had, we realized that we've really only become stronger in the process. Yes, there are days when I feel so tired, emotionally drained and beaten down that I feel like the weakest person ever, but overall, I do think this has thickened my skin. All I have to do is look back 5 years and how I handled things then. Very little shocks us these days, and unfortunately, we have been living like something else is lurking just around the corner. But despite being tougher as parents, it's no easier. With the new adrenal issue, and the added pressure to keep her only functioning eye healthy, it's hard to see a break. I think that's one of the hardest things right now - not seeing reprieve. Our parent's have been amazing at giving us breaks; to go to dinner, go to coffee, have a night with friends - or to work (somehow we both still have jobs after taking so much time off!). Many others offer to help us all the time, which we really appreciate. And that is sufficient for now. Someday we will get a longer break, have fun and relax; but it is hard to see that right now.
The light through all of this continues to be Avery's incredible, sometimes unbelievable resilience. She's doing so well in school, loves her teachers and friends, and comes home smiling every day. She's doing more and more "typical" things each day, is learning Braille, and becoming much more independent. We light up with joy each time she does something new, or shows excitement over something. Lucy is being a good little sister, and although she wishes she got more attention (ahem, terrible twos...), she's starting to "get" that her sissy isn't like all the other kids, and needs a little more attention sometimes. I'm sure it's a balance we'll be working on all our lives.
Heading into 2016, I'm focusing on being more mindful. As cliche as it is, it's imperative we live in the moment of the good times, hug our kids tighter and cherish the healthy days. Because we know what constitutes a "bad day." We've experienced our own, as well as others who have it so much worse. As hard as it can be to focus on the positive some days, I know that it can always be worse. Avery has also made so.much.progress. Unbelievable progress since she came into the world. I remind myself of the mountains she's climbed, and the roadblocks she's overcome to get me through the bad thoughts. And to try not to dwell on the "what-ifs."
There is reason to believe that this coming year will be a good one, and that's all we need. Happy, healthy 2016 to you all! Thank you for your support...xo
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