Covid update

I’m sure that my emotions during this time are similar to everyone else’s: some days I have energy and drive to get things accomplished, and other days I squirrel myself away as much as possible and hide in the safety of my covers and Netflix. I have not done an update in awhile due to my anxiety about opening up and sharing our reality.

We are all unsure of our next steps. Days are challenging whether you are trying to work from home as a single individual, or going to work outside of the home with a family to keep safe at the end of the day. Being teachers, Michael and I are fortunate to both be at home doing our best to make it all work out smoothly.

Sure I have had days where I just needed to get OUT, even if it was just for a drive or breath of fresh air...but this time has truly been a blessing for our little family. We worry about our time with Bridget, it’s as simple as that. We have been doing our best to stay home (away from others at all cost) because of Bridget’s syndrome. Sanfilippo (MPS) children do not fare well when it comes to anything respiratory.

Throughout this time, I’ve been able to slow down and observe Bridget more than I normally could when the work day quickly moves into bedtime routines. Her mobility and muscle tone are definitely decreasing. She rarely attempts to go up and down stairs anymore because of the risk of falling. Even when going up stairs, Bridget tries her best to crawl, but even that now isn’t working. I can’t even put into words what it is like watching your child grow in reverse.

Her final appointment for her ankle braces is next week so we are hoping that will help with the falling, and possibly maintain some of the strength in her weakening joints. Along with the braces we now have Bridget’s stroller chair which has been vital when attempting family walks. We let Bridget walk alongside us (she prefers to hold one of our hands), and as soon as we notice her strength level going downhill she gets to ride the rest of the way.

A developmental doctor check in is on the calendar as well as a meeting with her neurologist to assess some possible drop seizure activity that has been occurring lately too.

I always fear letting others in on the raw reality of life with Bridget. I never want to make anyone uncomfortable knowing the truth of what is going on. On the flip side, I also don’t want to sugar coat things and make life appear to be picture perfect as it can sometimes look on social media.

Tomorrow is MPS awareness day, and although we will be at home, if you would like to show support for Bridget and many other beautiful children walking the same path, you can do so by wearing purple. I know it would bring some joy to this household.

Thanks for sticking with us on this journey.