Post-Surgery Update

We are ten days out from Elena’s Baclofen Pump surgery. I wanted to give a brief update on how she’s doing.

First, let me just give you all a big squeeze and say THANK YOU. As always, this community, this safety net of ours is reliably there to catch us, to hold us, to pray for us and to encourage us through our challenges. I’m always amazed at the outpouring of love that happens when we, and our little girl, need it most. Every text, message, call, prayer, good thought and well wish was such a comfort during the last week.

As usual, Elena was/is a champ. Without a doubt she is the toughest and bravest person I’ve known. Everything surgically went as hoped, and though the anesthesia wreaked havoc on her little body (as usual), we had no major hiccups thus far. Almost immediately we have begun to notice positive effects of the medication being administered by the pump.

Her body is noticeably less tense. She is having fewer spasms, startles and dystonia (which essentially is uncontrolled movement). Our main concern was that it would negatively affect her head control, which is already a struggle for her, but so far it seems to be the same, no worse. Perhaps our biggest win has been sleep. This has been a major issue for us over the years, with Elena waking multiple times at night and often for long periods of time. At times, it has felt like we’ve been in the newborn phase, waking every 2-3 hours, for years. I have always felt these were related to muscle spasms and the inability of her body to simply relax. We have our fingers crossed, but she has slept through the night without waking every night since we have been home. This is miraculous. She has not done a stretch like this in YEARS. We are so very hopeful for continued rest, for all of us!

We had her post-op check up yesterday and the doctors were pleased with her progress. She has a nasty (approx. 5in) incision across her belly and a hockey puck sized object imbedded under her skin, but for the most part, seems unbothered by it. Over the next several months and up to a year, we will be working closely with her doctor to identify the best dosing for Elena to optimize the benefits of the pump.

With just over a week under our belts with Elena’s new hardware, we are both happy and hopeful with her healing and the potential for her body.