Summer

“How’s Bridget doing?” That’s the question we’re asked frequently. You have no idea how much we appreciate all of the prayers and well wishes for Bridget. However, it’s a tough question to answer. The last week of school was a tough one for many reasons. It started off with Bridget acting extremely irritable, followed by no sleep....and when I say no sleep...I mean ZERO. 

We did everything to try to figure out the issue, as well as her amazing team at school. In the end I had to take her to the ER. You know you’re a Sanfilippo mom when you and your child are recognized when heading into the ER, clearly we’ve been there a few times. After multiple tests, we found out that approximately 20 inches of her bowels were obstructed. 

It’s indescribable to know that your child’s internal organs are slowing down. We don’t know at what rate, we only know that we need to keep an even closer eye on her. Thank goodness for all of the doctors that we have helping us through this. 

Since working through that issue, plus a couple of allergic reactions, summer has actually been pretty nice (a HUGE difference from last summer). Honestly, she’s been in the best mood that we’ve seen her in for a long time. I’m incredibly happy about this, but there’s also this feeling in the pit of my stomach...wondering when the cards will fall again. Each day when I wake up I wonder what kind of day we will have with Bridget, it’s a complete roll of the dice. 

There are some appointments coming up that cause anxiety: a swallow study, another eye exam, and another round of allergy tests.

The swallow study has been recommended by her school OT. In communications with school regarding what we are observing at home in her eating as well as what they are seeing, it’s time to have her checked out. The reason for a swallow study is due to her constant choking when eating. The worry is aspiration while eating. Many Sanfilippo kids end up having a G-tube placed. I just honestly hope it isn’t time for that. 

The eye exam is to check on the growth of her cataracts in both eyes, and the additional allergy tests because we can’t find the root of her reactions...even when tracking her food intake. 

Thanks for keeping up with us. Will update again soon. #teambridget