God I hope we are in the middle and not still the beginning!  So much, and yet not that much has happened since my last post.  We’ve pretty much still been in cocoon mode since March, but we’ve eased up a bit here and there over the course of the summer and created a small pod of “safe” people and places.  It’s been no easy feat, I’ll tell you that.  Depending on who you are and where you are reading this from, you may think that we are being overprotective and unnecessarily conservative about it all.  I’ll tell you that you are wrong and we can agree to disagree ;o)

But I digress…let’s get into what we HAVE been doing before we get into all of that mess!  We (Tommy) has taken the stay at home opportunity to improve things on and in our house that we have been wanting to do for 10 years since we bought it!  Small things that you may or may not have noticed, but we did, and we are so happy they are accomplished!  The big project was creating a clean, safe, and functional basement space for the kids!  Some would say it is a re-creation of Tommy’s childhood, as it includes a Ms. Pacman arcade game, stadium seating with a projector screen and theater sound, a bar/stove/fridge, poker (err school work) table, chalk board and white board, and my personal favorite…the cat door!!!  Most of the items were in our possession already (which tells you more about Tommy’s childhood…), and so a physical project at low cost.  Win, win!  We have all been working and sharing space upstairs over the last 6 months, and this will add “getaway” space that I am sure will be much needed as the weather changes.

We took three vacations away from home and life, which were awesome.  Even though we didn’t want to be around too many people, we absolutely needed to get out of town and have a change of environment, and we were able to safely do that this summer.  Our first trip was to Rochester to a house on Lake Ontario.  I would’ve been the last person to go to western NY to vacation in the summer, BUT, it was great!  The lake is like an ocean, the weather was in the 90’s, the house was big and fun!  A few weeks later we took off for northern Vermont, about 1/4 mile from the Canadian border.  A lot more rural, still a large lake in Lake Champlain, no wifi, and still just as awesome.  Cabin life at it’s best among a community of feral cats that kept us on our toes!  A few weeks after that we took our last vacation up to Hampton, New Hampshire.  We went camping with Celia and Todd in their new pop up camper, and our new camper…the TommyVan.  A lot more rustic, do it yourself, use the port-a-potty, layer yourself in bug spray, relax by the fire all night, type of life with an awesome beach day squeezed in.  Despite having to alter things a bit, we were also able to welcome a new family member to the Nicchi side with Vinny and Cindy’s wedding in August where the girls acted as flower girls.  All of our summer vacations and events were amazing, and at the end of them all we were happy to be home.  Which was good, because we’re gonna be here for a while!

Work, for me, has been nothing short of chaotic, hectic, and stressful since May. Though it is certainly not lost on me how lucky I am to be valued in my position, and still have a job at this point.  We have worked very hard to create policies and protocols that have changed daily to balance mandates, guidelines, and recommendations from the CDC, state level, and NCAA.  It’s a puzzle that doesn’t exactly fit, but we are trying our hardest and will enter a fall season like no other this year.  Fingers crossed we make it through the semester, but we are all (employees included) being tested weekly which at least gives me some sense of “back to reality” when every little ache and pain creates a week long “do I have it?” moment!  Truthfully, I won’t miss the travel or the 7 day work weeks this semester, but I hope we don’t get too comfortable here because it will make going back very difficult in the future!

Tommy’s work has also been shifted dramatically, but he continues to find ways to reinvent himself and the talent that he works with to stay relevant and profitable.  Case and point, we now own a heat press machine and a variety of t-shirts, mugs, and masks that get created (in my house, at all hours of day and night) for comedy fans around the world!

Now to what you really want to know.  We have been having virtual visits with Boston for Brooklyn since April, and then an in person visit in early August.  All in all things have been status quo.  Here are the details:

Cardiology – her heart is hanging strong.  Her echo done in August was all but the same from the one last September, and very slightly improved as far as Tricuspid Valve leakage goes.  Her PLE is being managed and bloodwork in this department shows appropriate Albumin levels.  She is having daily diarrhea since the spring, but they aren’t all that concerned as long as it is functional.  I’m not sure what level of diarrhea is “functional”, but she’s not all that bothered by it so we let it ride.  Her bloodwork did show that she was pretty dehydrated, so we removed her lasix and allowed her more fluids during the day which leveled things out much better.  The awesome news of course is that she weighed in at 47 lbs!  The last time we saw them at the end of January she was 40, and before that in December she was 37!  Puttin’ on the pounds and loving every minute of those triple cheeseburgers in the TommyVan!!

Immunology – a few highs and lows here.  Her IgG levels in late July were through the roof, 1550, which is the high level of a normal range for kids her age.  For reference, when she was having all of the infections and illness issues her IgG was 139, and they told us even with infusions it likely wouldn’t go above 1000.  Well, take that!!!  Or so we thought.  Based on the 1550, we asked if we could reduce her weekly infusions to every other week and her doctor said yes.  This was reason to partaaayyy!  We were all so happy to have 14 days in between sessions for so many reasons!  About a month later her levels, that we were hoping to stay where they were or lower a little bit but above 1100 still, dropped to 750.  While still in a clinically acceptable range, it had dropped a little to quickly for his liking.  He attributed the 1550 to her dehydrated status at the time, and that 750 might be more of a real number for her.  So we had a couple of rounds “off” but had to jump back to every week which she wasn’t all that happy about.  We will continue to monitor numbers to get a better sense of where her true levels are at in order to look at adjustments for the future.

We will have a virtual visit with the Genetics team this fall to discuss all things Kabuki, and of course we had the COVID conversation.  It was pretty clear that we were choosing the difficult, but right path as it relates to protecting Brooklyn at all costs.  Even with the general pediatric population doing well or being asymptomatic with the disease, she does not fall into the general pediatric category and never has.  She checks 3 boxes on the “conditions at increased risk” list.  One of those is probably enough, but 3 kinda confirms it.  The message was very clear from Boston…she should not get COVID.  Her risk for complications is higher, and the data on children is just not complete let alone on children with complex medical issues.

These decisions to eliminate ourselves from situations or deny gatherings or visits to certain groups of people are not easy, but when you think outside of the moment, they are the right decisions.  So, I ask you not to judge how we are picking and choosing to live our lives over the next 6 months. If we don’t see you now, whoever you are, we are doing it so that we CAN see you in the future.  And trust me, we desperately WANT to see you all now!!!  Please don’t stop checking in with us and asking us to do things.  We might say no, we might say yes, and we might try to get creative, but my fear is that we get forgotten from friend groups or play groups, etc.  The social-emotional impact of that for both kids and adults could be detrimental.  Kennedy NEEDS her friends and social interaction.  Brooklyn would be happy as a clam to stay the little introvert that she is, but she needs the socialization too, maybe even more.

Now that we are approaching the fall, we’ve finally made the difficult decision that Kennedy and Brooklyn will at least be starting the school year virtually.  This was an easy decision for my brain but not my heart (but at least we have the basement!).  It won’t be easy, and none of the decisions these poor educators are having to make are easy either, so again, we will just ride with it.  PSA: “Be kind to your teachers and administrators this year.  They are doing the best with what they’ve got.”  The worst that happens with virtual 1st and 4th grade this year to our kids is that they learn how to do their laundry, clean the house, and how to be the best Super Mario Bros. players in Niskayuna!  It can’t be all bad!

Enjoy some pictures from our summer, stay safe and stay connected!!