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.
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 (http://nyti.ms/1BVNe9G). 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.
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.
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.
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.
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
