A number of years ago, I wrote a book detailing the choices my wife and I made to use Donor Insemination to have a child, through her birth, and finding out she had a terminal metabolic disorder called Zellweger Syndrome.
At the time of that book, Ciera was 5 years old, an achievement we never thought would happen. As she closes in on 10, I was trying to start writing a follow-up. I had gotten as far as this sentence in the forward: Happily for us, Ciera is now approaching 10 years old! “Though she still has daily struggles to deal with, she has been fairly stable and continues to grow, learn, and experience life.”.
Now, as I sit in a hospital room with Ciera, hoping to get home tomorrow, I can’t believe how much has changed from a couple months earlier when I wrote that. The new sentence should be “Though we have gone through so much, and thought we had become accustomed to our life, sometimes life just stands up and kicks you in the balls with steel-toed shoes.”
For those who don't know, Ciera recently had an aneurysm burst which caused a stroke. It turns out that besides the Zellweger Spectrum PBD she has been dealing with her entire life, she also has something called "moyamoya" disease http://www.childrenshospital.org/conditions-and-treatments/conditions/moyamoya-disease
About 10 days ago, we were enjoying a nice Sunday morning. Ciera was crawling around, and I noticed she was having trouble, not able to support herself on her right side. She fell a couple of times, and looked really tired crawling up on to her mattress on her room. When she tried to crawl off, she fell on her left side, pretty hard. I picked her up, and she was acting as though she had a seizure. She was really tired, and not holding her head up well.
We were keeping an eye on her, and she started to feel better. After I while, I started to put on her DMO - a special "west suit" that was designed to help her stability. I had it on backwards, so took it off and gave her to Papi (her Grandfather) while I turned it around and got it ready. Ciera started acting all sleepy and limp again, then, and we decided to take her to the E.R.
Damn good thing we did, because what we found out was that she had an aneurysm, and was bleeding in her brain. Thankfully, the Neurosurgeon was able to go in and stop the bleeding. She spent about 5 days in the PICU, and has been in the Children's Hospital here since then. But what we found out floored us just as much as when we were told about her Zellweger diagnosis. They told us she had MoyaMoya - the main carotid arteries and blood vessels in her brain were malformed and shutting down, and to compensate, her brain had developed all of these tiny blood vessels to do the work. The problem is that these tiny ones are not strong enough to do the job reliably, and things like this stroke will continue to happen.
She is doing ok now, but today was a bit of a downer after the last two days of amazing progress. She was tired pretty much all day, and had a small fever during the evening. We even had another CT scan done, but luckily there was no new bleeding. These up and down days are just to be expected when recovering some something like a stroke, from what we understand.
So right now I am sitting here, having no idea what the next several months will hold. We have to figure out if she will be a candidate for corrective surgery, but she is the truly unique position of having these two conditions - possibly the only one in the world. Doctors from Vermont, Boston, Salt Lake, and even London are looking at her records and getting together to try a figure out the best course of action.
Thankfully we have a wonderful group of family and friends who have been really helpful - taking care of Bailey, cleaning our house, getting ready for Ciera's new equipment, and just helping us emotionally and helping keep an eye on Ciera so we can breathe for a moment. But still, it's going to be a while before we know what the NEW, new "normal" is going to be.
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