Time for news!
First of all, I have to once again say, if you have no idea what’s going on with my younger daughter, Riley (2), then you can get caught up here. It’s a short read and it goes quick if you made it this far. Plus… PICTURES! 🙂
Second, we just want to thank everyone that’s been thinking about, praying for our family, and checking in on Riley. It means a lot! Thank you all!
Now on to the news. During the last quick update, I mentioned a couple of tests she had to have.
The first test was a swallow study and the doc wanted that done ASAP. The results of which, we were told, would basically indicate who gets to decide when surgery is scheduled.
During the test they’re basically checking to see how food and drinks go down. Unfortunately, Riley has Oropharyngeal Dysphasia which means she has trouble swallowing liquids. Apparently this is directly tied to the Chiari malformation. Thankfully, there haven’t been any other complications that we’ve encountered thus far.
For the next ten months we’ll have to mix her drinks with a thickener so she can swallow the liquid without choking. After which time she will be re-evaluated to see if she has improved.
That means the scheduling was out of our hands. The doctor has more power in that arena.
Spine MRI: Riley also had to undergo another MRI, which she again had to be put under for, naturally. This time they were looking at the entire spine checking for tethering, and other bad news stuff. The good news here is that, they were able to again confirm the chiari was present, however the rest of the spine was perfect and normal with no damage or change in the fluid flow or anything like that.
Well, we’re scheduled for a pre-op checkup on July 11th and her actual surgery–unless something changes or gets moved somehow–is July 15th.
She’ll be in the hospital at least that whole week maybe more it depends on Riley and how well she meets certain milestones before she can go home.
How are we doing?
In a way we’re a little excited. Riley’s headaches have been getting worse and worse. They interrupt her at play just doing normal things, not only when she is doing strenuous things like laughing or crying really hard.
I think we’re still in shock a bit that this is even happening. I know I am at least, not sure about April. Cadence is devastated and really worried about her little sister (her words) we pray for her every night and I’m constantly trying to find ways to compare it to her real life struggles so she won’t be as scared or afraid for Riley. They love each other so much and it just breaks my heart every time I see Cadence upset about this because I don’t want to rob her of her childhood by explaining a little bit of what’s going on, but at the same time, she needs to know so she doesnt rough house as much with her little shadow (sister) post surgery.
I think mostly, we’re just anxious and relieved. “We have a plan, let’s hurry up and get this over with,” type deal.
We’d be lying if we didn’t say that we weren’t a little terrified that our “Smiley Riley” doesn’t come out so smiley but rather hurt and jaded or reserved because she doesn’t understand “why we let people hurt her.” It may seem irrational but still, I’ve personally seen it happen before.
Throughout this whole process we’ve been told “kids are resilient” and “kids bounce back quick” which are just a few mantras/kind words of encouragement everyone has extended to us. All of which may be true but it doesn’t put aside the fact that our two-year-old has to have major surgery, part of her skull and vertebrae removed, a skin pouch of her own neck muscles placed over to create this pouch/pocket thing–it’s scary.
Then there are all the percentages of all these terrible things happening post surgery. All of which are very low which should be very comforting but so were the chances/percentages of our child having Chiari I Malformation. So were the odds of both of our daughters breaking their arm back to back. I don’t like the odds game right now.
Tomorrow April and I will have been married for eleven years. I think about the vows that I recited in ceremony every day. For better, for worse, for richer, for poorer, in sickness, and in health: these especially come to mind day in and day out. By and large we’ve mostly been better, mostly poorer, and I can’t even begin to count all the nights in the ER, the days and days of Cleveland clinic battery of tests, and that’s just the tip of the iceberg. Somehow, we’ve always managed to come out on top. I didn’t think it was possible but just last week, I felt like our relationship had grown closer, had matured and aged somehow–in a good way. I hope we always continue to do that. It was together that we overcame and got through all the tough times, that’s how we’ll get through Riley’s surgery and recovery–together. Love you April. Thanks for putting up with me!
Thanks again to everyone for their continued prayers and support. Your thoughts and positive energy are definitely a welcome presence in our hearts and home!