I often mention my "Peter's mom group;" a group of moms I've met online or through other means, and all our kids have Peter's Anomaly. We've all dealt with the whole gamut - any surgery, complication, infection, or weird side effect that could happen, one of us has gone through. We keep each other sane and I don't know what I'd do without them. But knowing them and their kid's stories reminds me that Avery's condition is so fragile, and in the blink of an eye (literally), she could lose her sight. It's very easy for Avery's retina to detach during surgery, for her glaucoma to spike and cause a load of issues, or for her to get a serious eye infection that could be her eye's demise. Many of the children I know with Peter's only have one working eye, and that good eye may have very poor sight. This is a reality I try not to dwell on, but know is something we may face one day. It's so scary to enjoy the moment when you know that you may be dealing with your child being completely blind one day. I'm sad that I can never truly calm down and enjoy things, because I'm constantly worried about losing everything we've worked so hard for in Avery's vision. I have found myself getting very controlling of how she's taken care of, because the responsibility falls on me if something happened to her eyes. I don't enjoy this, and 'living in the moment' is something I have to work on every single day.
As far as her noggin', things have been great since her shunt revision in May. She was able to move right to her big girl bed, and in her own room. She had been sleeping in her elevated bed in our room since January, so this was a huge relief. (Although waking up with her throughout the night was practice for what's to come in a short time with baby!) She had a couple issues right after surgery, as her body adjusted to the new fluid regulation, but nothing of note for a long time. This is great, but again, we have to keep in mind that another malfunction could be around any corner. The chances of it are too high to ignore, but we try to live our lives as normal as we can. She recently had a cold/flu bug and I was so worried that her immune system would fire up and attack her shunt and her cornea grafts in the process. Which is probably why I've been hovering over this kid more than usual.
So, I've been trying to tackle other pressing issues while we're out of surgery mode. Like her speech, or lack thereof. I'd say that besides her eye and brain health, her speech delay is the next stressor on my list of things to stress about. It's so frustrating for her and for us. We had issues getting her speech therapy this summer, which only adds to the headache. To supplement her speech therapy through the school, we tried to get her into another program through the hospital. They did an evaluation two weeks ago, which was super fun like the rest of her evaluations. They ask me 1,000 questions about what she can and can't do, and ask her to do a bunch of things. She typically needs to warm up to new people, so her stubbornness comes out and she may not perform as well as I know she can. As a mom, I want to defend her and say, "she started saying, 'blue' last week!!" hoping this will bring up her score. Two days later, I got a summary of the evaluation in the mail. The word, "severe" was all over it, and they "strongly advised" therapy twice a week. Which I expect, but it's not easy to see negative things written about your child. Compared to an average three-year-old, Avery is extremely behind in speech. Like 1,194 words to be exact. We do a lot of work to help her speech - from workshops offered through the schools, to books and special flashcards and sign language - everyone close to Avery works hard to get her to talk. Our lives are very over-articulated so she hopefully picks up on language. I know that she's been through an incredible amount of obstacles that attribute to her delay, but that doesn't mean I shouldn't push her. I know she can do it, it's just requiring more time and effort than anyone expected. However, even given the fact that she has mild cerebral palsy following meningitis, is extremely vision impaired, and has been under anesthesia nearly 100 times, our awesome insurance company doesn't believe these are enough to warrant coverage for speech. I just got a call that our insurance denied the request for speech therapy. I know it can be fought, but why should I have to? Don't they realize that moms like me deal with enough crap, and fighting for coverage of something my child obviously needs, is the last thing I want to do? I'm not even getting into the fact that she has issues warranting physical and occupational therapy to be paid for as well. And time lost in getting her therapy is just not good.
On a positive note, we have noticed over the last few weeks Avery being much more interactive with other kids. She normally doesn't notice them, or feels threatened by them, but lately, she's been engaging and very interested in what they're doing. This says great things not only about her vision, but her development. John and I look at each other and smile when this happens, and it's the encouragement we need when other things aren't perfect. She is also attempting to make a sound when you ask her to repeat a word. As I said, "blue," is on this list, so I love to point out anything blue to hear her say it!
Last night, we visited Grammy at her work to check out baby 2 and she looks healthy, (kind of big), and as cute as a fetus can look on ultrasound. :) We're anxious and excited to meet her and know for sure that she's 100% healthy. In the meantime, we're trying to finish our basement to make room for more baby crap, and reminding ourselves what it's like to have a newborn in our home. I have a feeling it will all come back to us very quickly. The fact that we could potentially have a healthy child, is so bizarre to us. We just had a long conversation about how surreal it will be to have the baby handed to us and look into crystal clear, healthy eyes. For our only worries to be normal worries. We know that we can't be totally sure at this point what we will be given, but we can't help but imagine how strange life will be with an "average" baby. That's a whole other conversation, though!
I can only prepare so much, I know, and after that, I just have to pray that things stay stable with Avery's health (at least until November, PLEASE!), and she loves her little sister. I always find myself wishing we had a crystal ball to see what's around the corner for us, but turns out, those don't exist.... But writing down all my thoughts and worries always helps, so thank you for reading!
As always, we appreciate your thoughts and prayers for our little (soon to be big) girl and her health.
