Unexpected news

 A friend asked me the other day how close I was to “losing it”. I had to think long and hard before coming up with a visual that accurately described where I’m at. But here it is. Have you ever seen a kid with an extremely loose tooth...to the point that it’s dangling by a minuscule little strand from their gums? That’s how close. No anxiety meds, iced lattes, or meditation music would be able to soothe my raw and vulnerable emotions at this point. 

Decembers are always difficult….for everyone. The impending winter break leaves children at school wound up with excitement, teachers are overwhelmed and often feel incredibly under appreciated, and holidays bring financial and travel stresses. This holiday, however,  I haven’t done much thinking about anything beyond Bridget’s needs. It seems like no matter where I turn, another issue is on the horizon. I sometimes worry that I don’t put enough attention on my other two children, my husband, or even myself.

Over Thanksgiving break, we set up an appointment with Bridget’s gastroenterologist to discuss moving forward with a gtube. Michael ended up taking Bridget to an assessment where they have her drink a beverage with Barium in it (similar to the swallow study she had done before). This test was to make sure her stomach is in the correct location for the gtube to be inserted. Following the test, Michael spent time with the surgeon that would be doing her surgery going over fine details.

We took time to process all of the information, the pros and the cons, and ended up setting up the procedure for the middle of February (as December and January are incredibly busy months for us). The surgery will require us to stay overnight with Bridget in the hospital to learn the proper techniques to keep infections at bay and learn about how to feed her correctly with her new ‘gear’. I can say that I honestly already have a massive knot in my stomach…and the procedure is 2 months away.

With that all of that said and done…I thought it would be smooth sailing until then. Hard no. I got a call straight from Bridget’s G.I. doctor at Blank. Now I don’t know about you, but it is a rare occasion for us to actually speak to a doctor on the phone with their crazy demanding schedules. So naturally I was immediately on high alert. It turns out that the scan they did to observe Bridget’s stomach yielded some other information. 

Bridget is like a human puzzle. It seems like once we have one thing figured out, another situation pops up. Well, one of her problems lately has been her mobility. She has spent more and more time in her stroller chair due to increasing falls. It’s hard to tell what causes the falls at times. Could they be her small absence seizures, did her brain forget to remind her foot to move, did she legitimately trip on something? Well the scan showed that her hips are not displaying the way that they should.

The top of her femur is curved and should fit correctly into the curved part of her pelvis…however the curved part, has degenerated (as is expected with Sanfilippo…her body is literally falling apart from the inside out) unable to properly support her leg bones. I quickly reached out to a Sanfilippo mom friend who explained that this is part of Sanfilippo degeneration known as hip dysplasia. Essentially she is ‘bone on bone in her hip sockets’. I cannot even imagine the pain that she endures day in and day out…yet she remains a trooper. I got her in to get an x-ray today and they confirmed the diagnosis and they will be expediting an appointment to meet with the bone doctor.  At this point I truly thought Bridget wouldn’t have to encounter yet another specialist to add to her ever growing resume…but here we are. 

The difficulty with hip dysplasia is that her bones will continue to weaken, and in all reality, most children with this syndrome would not move forward with such an invasive surgery that requires such a long recovery time. I’m just stunned.

I am so thankful for the team that we have that pays such close attention to their work with Bridget. I know that they go above and beyond to take care of her each day. Sometimes I feel like I ask for their assistance much more than I should. They have been ears to listen to us, shoulders to cry on, and hands to hold. We had her annual IEP meeting this afternoon,  and it is humbling to cry amongst a table of 10+ people while updating them on our most recent findings. Yet so uplifting to have them also shed a tear alongside you because they care about your child just as much as you do. 

I feel like my mind regularly consists of spiderwebs of concerns, questions, and what if’s. This Christmas, my goal and only wish, is for our little family to enjoy time together, and for Bridget to feel loved and in as little pain as possible. 

Thank you to everyone for checking up on us, and keeping us in your thoughts and prayers. It’s been a difficult season in the Barta household.