December: Thanks for waiting for this update

Hello, all!  Sorry it has been a while.  Much has happened this fall, and there is much news to share (how could there not be, with two fast-growing kiddos in the house!?) I have taken up a new role at work, and thus have found that shifting sands and new projects of a kind that I have little prior experience with have taken up most of my waking hours and focus over the last few months.  That landscape only promises to intensify, but I am committed to maintaining my writing here- please be patient as updates may be sporadic over the next few months!

Jack had an MRI of the brain in early November, and I am pleased to report that it was clear.  There is no longer a great, gaping ‘cyst’ where the tumor had been, the ventricles are of a moderate (no longer swollen) size, and most crucially, there is no sign of a re-emergent tumor.  I was surprised, thrilled, and a little terrified when Dr. Walter informed us that there is no further need for regular MRIs.  He feels that given Jack’s tumor type, the greatest danger for reemergence is likely behind us.  It will be a strange thing not to get those nerve-wracking tests on a regular basis… and it will be hard to feel secure without being able to tell myself that a recent scan showed nothing.

Further shunt failures are likely for Jack, so there will certainly be MRIs in the future– just not regular ones.  I think this ushers in a whole new phase, and is really great news.

FullSizeRender (51)We had a more sobering visit just a week later with the neurologist who is now following Jack as a result of the April seizure.  Back when the seizure had taken place, an EEG (a test used to detect abnormalities related to electrical activity of the brain) was done.  At that time, we were told that there were some abnormalities with the scan- nothing serious.  I assumed then that this was likely because of the electrical storm that had been happening in his brain just hours before.  In November, we took Jack for his follow up EEG, and found that- while there was no sign of epilepsy (great news)- the scan did not show a perfect, untouched brain that is functioning exactly as any toddler’s might.  There are some impacts that are consistent with the kind of damage that his brain suffered.  I’m being vague here- largely because this is the first time that I have hit upon a part of Jack’s story that I feel I need to treat with some sensitivity… because I don’t know what Jack’s own feeling will be about sharing this information some day.  Our brains- their limits and their capacities- make us who we are.  This is a fact that I’ve struggled with my whole life; I know how important it is for one to make up her own defining narrative on the subject — so really, it’s up to Jack to decide when and how to tell this part of the tale.

IMG_2175We know that there will be some differences in the way that Jack’s brain works.  But we don’t really know what that will look like.  What I can say is that what I see at home is amazing progress- jumping, running, a sense of humor and curiosity, a temper, empathy, burgeoning communication abilities, sociability, and interests that are all his own.  I don’t see him really having trouble making his own way in the world- though a parent never stops grieving when their child’s way is harder than they wanted it to be.  Our neurology visit gave us a reminder of this hard truth, but it is just one small point of data in a sea of progress, and there’s not much that we can do with that data right now.

Jack has also let us know that he prefers to use his voice over his signs.  He’s figured out how to speak over his trach, so he is pretty vocal even without the valve.  One day recently, he got off of the ambulance at the end of the day and we noticed he wasn’t using his voice- he was signing just as if he’d never stopped.  It turned out that his cuff had been slightly over-inflated, cutting off the airflow to his voicebox.  He was nonplussed.  Just switched right back to his signs until we figured out what was up.  He and I also picked our signs back up at a recent, rather noisy event, when we couldn’t hear one another well.  It was gratifying to see him using all the tools at his disposal.   I’m really grateful that we invested the time and energy in sign language for Jack.  When he vocalizes, it is often very hard to understand him– particularly when he tries to tell you a lot all at once– but he can often get his point across fairly well.

Here’s a recent sample of Jack talking (with his valve on) so you can get a sense of how far he has come this semester!  For those that may not be able to understand him or to access the audio, here‘s a quick transcript.  (Sorry I didn’t have time to caption).  He was pretty hysterical over the word “cheat”, and loved saying it over and over.

Sam is ever more chatty.  Each day I am amazed at how quickly the gaps in his knowledge about the world are filling in.  (We had a half hour long, rather loop-like discussion of the weather recently.)  Here’s a recent Sam-rendition of “Santa Claus is Coming To Town”, with transcript here.  I think you can see just how hilarious it is to live with this inquisitive, unafraid spirit who is going to pitch in, have fun, and say his bit… whether or not the details are fully fleshed out.  Wish I had a touch of his confidence!  More to come soon on Sam and the holiday break.  I also hope to share some of my thoughts on the connections that I’m coming to appreciate between patient advocacy and my own line of work in information literacy in coming posts.  I’m also hoping to write more about work-life balance in the coming year.

Thanks for reading, and for bearing with me through the last long lag!

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4 thoughts on “December: Thanks for waiting for this update

  1. jrbi13

    Hang in there, Mama!! I so love hearing about the boys, and also love the way you write. Keep up the brilliant work! The boys are getting so big, and are adorable as always (alliteration!) Take care : )

  2. Anne

    You do not know me but I always feel compelled to comment. Your boys are beautiful and I so enjoy your updates. I just love the way you write. I only wish I had half your talent. Blessings to you and your family!

  3. George

    Thanks for the update – those are two beautiful children! That is wonderful news about no more “routine” MRIs for Jack.

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