Pumped Up

Tuesday marked one year since Elena had her Baclofen pump placed and it just felt like a good time to update whomever is left out there still reading my VERY intermittent blog posts.  Going into this incredibly difficult decision, we knew it would not be a magic solution to Elena’s deteriorating body issues but we also held hope in its ability to give us greater control over her ongoing struggles.  As with all things on this journey with Elena, not everything goes right, an extreme amount of patience is required and it’s a constant give and take.  It’s been far from a perfect solution to things, but it has offered Elena (and us!) comfort, relief, and some semblance of control. 

The first, and by far the biggest, win is sleep.  Remember being up with an infant multiple times every night for months and months and then when they finally begin sleeping through the night, and for the life of you, you can’t remember how and the heck you were able to endure so many sleepless nights?  That was us this past year.  For the first time ever, we have had more peaceful nights than not.  For this alone, the pump has been worth it. Night has always been time when her body seemed to be in overdrive, leading to her discomfort and us up all night trying to alleviate it.  Being able to increase medications at times of the day (and night) where her body tends to cause the most issues, has given us back some control, and allows all of us to finally rest.

On the flip side, a year later we are still working our way up to find an ideal dosing.  We learned early on that Elena was incredibly sensitive to this medication and so we have had to very slowly make increases, and have yet to find that sweet spot. Too much of an increase she gets all “noodly” (aka limp and too relaxed) and lethargic, so we have to be careful. Even with this medication, we are constantly battling the unrelenting signals her brain sends to her muscles to fire at all the wrong times, in all the wrong places, without a moment of reprieve. Despite our best efforts, her body still curls and tightens and shakes and spasms and twists and bends in the most debilitating of ways.  Medication, massage, therapy, propping, positioning and stretching are no match for Elena’s little body.  Its failures have been and always will be Elena’s biggest struggle.  Everything we do, including choosing this pump, is to try and preserve it, relieve it, and prevent her from losing any ground.

Despite our daily battles with Elena’s body, it’s always a joy to watch her grow, make progress and watch her spirit shine.  A bit ago I posted about the progress she is making with her communication, and she continues to do so!  The partnership I had written about has ended, but it was truly life changing, not just for Elena but for her educators and therapists.  These world-renown specialists who have spent their lives dedicated to kiddos like Elena, were able to give her school team the tools to help them step inside Elena’s world and understand her.  As a result, she continues to prove to us all that she is smart, clever and so very much inside there.  Watching her respond and show us what she is capable of is the greatest treasure I could ever imagine. 

Elena will be transitioning over to the Middle School at some point this semester.  It’s been a slow go, as we have been in the middle of this giant initiative with her school team.  We didn’t want to pull her right as we had made all this progress and throw her into a new environment with a completely new team.  However, all the pieces are just about in place and our darling girl has come down with, what appears to be, a case of Senioritis.  She’s ready to make the move and roll and rule those Middle School halls.  I have begun preparing for this big transition by phasing out her JoJo Bows to the more age acceptable and on-trend Scrunchies.  Obviously I’m under a lot a pressure as her stylist.

Whether it’s changing schools or hair accessories or medications, change has been a constant. I once heard life described into three categories, anticipating change, in the midst of change or coping with change, and I couldn’t agree more. That sums up every single day of my life. Some change is good, some change is hard. I have found that the anticipation of it is by far the worst part. Much like the agonizing decision to implant this pump in Elena. The anticipation of it was 1000 times over the hardest part. Some of it has been good, some of it has been hard, but once we arrived, like everything else, it’s just rolling with the punches. So, we’re rolling. Rolling into year 2 with this crazy modern-medicine-marvel implanted into our 11-year-old, rolling into the halls of the middle school, and rolling into new opportunities for Elena to grow and learn and shine.

I’ll leave you with something that I hope brings a smile or a laugh to your day. This was Elena in therapy the other day. I have watched this video over and over, every time making me laugh. I can’t even remember what set her off in the first place, but I love, LOVE hearing her laugh and talk and show herself.