I’m thinking it might be a good idea to occasionally post updates on the kids here, particularly updates on Katherine. Facebook really isn’t a good venue for that sort of thing given that her medical information is a bit extensive.
We met with Katherine’s team at the Thompson Center as a part of a routine 6 month checkup. The Thompson Center hosts a CP clinic there, which means that she can see 2 Developmental Pediatricians, a PT, an OT, a Nutritionist, a Speech-Language Pathologist and a mobility expert all in the same building on the same day, rather than seeing them all separately. It’s a really long day for Rin, but it’s certainly better than the alternative. Additionally, it gives her medical team a chance to talk to one another immediately about her health and work together for her interests. If other parents of special needs kiddos get the opportunity to participate in multi-MD clinic settings, I highly suggest it. Pack lots of snacks and toys though, because it is a long day.
The good news is, her doctors are all very realistic and understand her well. Her developmental ped immediately noticed that Rin’s hamstrings were actually tighter than they were the previous visit almost six months ago. I was really frustrated to hear that, the girl gets PT three times a week plus range of motion exercises at home. I wasn’t really sure how that could be possible. But because her doctors are really excellent, they already had a few ideas for things we could try differently. First on the list is Botox injections into her legs. We had actually been given this suggestion before, but turned it down at the time. This time, we agreed to it. She starts school in 50 days, I would rather do it now than wait until she’s mid-semester.
The doctor has also begun prescribing Klonopin for Rin’s muscles and to help her better manage her anxiety and aggression. We’ve already seen promising results.
Then the ped had another great idea. Rin is in need of another MRI very soon. Since this requires 30 minutes totally still, she will have to be put under for it. So the plan is to put her under, do the MRI and while she’s still out give her the Botox injections. That way we won’t distress her any more than we have to. Which is brilliant, by the way. This will also be the first MRI she has had since she was born. The very first one she experienced at about 48 hours old, and it was prior to her shunt surgery, so there was still fluid on her brain. Now that the CSF has been draining properly, they will be able to see more fully what kind of brain damage she has sustained from the pressure of the fluid, and from the stroke that she suffered in-utero that set this entire chain of events off in the first place.
We should be getting a call next week with the date for this whole endeavor. In some ways, I am really excited to see the results of the MRI. That information may prove really useful to us in the future. On the other hand, it’s totally terrifying. Up until now, it has been very easy to assume that the brain damage she sustained was mild because we had no proof to the contrary. Once that MRI is complete, we may find out that it’s much worse than we’ve assumed. As she’s gotten older, I’ve come to realize that this is the most likely outcome. Of course, the opposite could be true as well. We could meet up with the doctor post-scan and get the news that her brain injury is in fact mild. That she still has a good chance of catching up developmentally and that she’s not going to remain an infant cognitively while her body morphs into adulthood.
The lack of information about her brain thus far has left me in a very comfortable state of mind where I can pretend that things will probably be “just fine” and that my family will eventually look like every other family on the block. I constantly have to remind myself that nobody ever benefits from denial and ignorance in the long-term. We really need this MRI and the information that it could provide, even if the information is devastating. Even if the information shatters the bubble called “everything will be just fine”.
It might not ever be “fine”. But God is still good. He gave me a beautiful daughter that hundreds of people are absolutely crazy about. He’s placed skilled and empathetic medical professionals in our way. He’s led us to a church where we’ve developed the closest relationships I’ve ever had so that we don’t have to be alone when the bubble possibly bursts. And so we can celebrate in good company if it doesn’t.
The author of all things good. Sovereign master over all things bad. No matter what the MRI tells us, God already knew about it and wove it into His redemption story. So while the outcome may not be “fine” it will most certainly be good. Because He’s using it for His glory.
The biggest thing we want from friends right now are prayers for peace and prayers that we remember God’s perfect justice and sovereignty in all things. It’s really easy to remember that now, and really easy to forget when you get a bomb dropped on you. I don’t want to forget who is in charge of all this. So please pray that I don’t.