We're Still Here!

Well, it's only been about 4.5 years since I've updated my blog.  👀  Someone recently asked if I was still providing updates via my blog and when the answer was no, I got a pang of nostalgia. Or was it guilt?!?  When I posted my last update in 2019, not realizing it was my last post for a few years, I was feeling a little overwhelmed with life.  Juggling working, the kids, extra cirricular activities, therapies, doctor appointments, all of it.  Every time I thought about blogging I got stresssed out about it.  Writing had always been my therapy but then it turned into a something I felt like I had to do and the more I stressed out about it I kept saying tomorrow, I'll do it tomorrow.  And then tomorrow turned into a week, which turned into a month, which turned into years. I've thought about writing several posts over the years but never did. I have definitely missed writing, especially when it comes to historic data I need for Alex. Over the course of the years I've relied on my blog to keep my memory straight on all she's endured and that's definitely been a missing link. I've also always loved looking back on Zach's childhood and family memories.  So....here we go.  Again.

A LOT has obviously transpired over the years.  Covid, surgeries, therapies, illnesses, milestones, set backs, etc.  There's no way to go back and recreate all of that for a post so I'll just start with what's happened most recently.  Alex is 22.  Gosh it seems unreal to see that in writing.  For the most part, she's doing well!

Zach is now a Sophmore in college, again...gulp, where has the time gone?!?  He is majoring in business management and is very involved with his fraternity, Theta Chi. He's doing well, thriving, and we are beyond proud of him.  We also really miss the energy and fun he brings to the house.

Aaron and I are also doing well.  Enjoying the last few months we have while Alex is still in school and we can have our "day dates".  As of May 30th she will age out of our public school system.  I can't even begin to tell you how much anxiety I have around that.  I left the corporate world and volunteer for several non-profits that are near and dear to me.  Aaron says I work harder now then when I earned a paycheck, but I love giving back to the special needs community and it's very rewarding for me.  Aaron is still working hard and is missing having his hunting buddy here at home.  

And, can't update on the family without adding that Rudy was excited to not be an only fur-baby.  His brother, Drake, joined the family in 2019 and turned 4 in October.  While he's a wild and crazy man on the outside, he's the most loving, snuggle buddy that loves belly rubs and playing frisbee.  He started out being Zach's dog, but he's totally become mine (sorry, Zach!) and he brings me immense happiness.  Rudy is still a fan favorite!

I guess the most up-to-date update on Alex is that on January 8th she had surgery to have a Vagus Nerve Stimulator (VNS) implanted.  Alex's seizures have increased over the years and despite being on four different seizure meds twice a day she's still having grand mal seizures.  We've had several admits to the Epilepsy Monitoring Unit and tried adjusting meds several times but we learned over the last few years that Alex is allergic to benzodiazepines drugs.  Unfortunately, most seizure meds are benzodiazepines drugs and so this was the best option.  Basically there were 2 incisions, one in her chest where the device was implanted, and one in her neck where the wire for the VNS was attached to her vagus nerve.  

We decided to cut her hair the day before surgery knowing where one of her incisions would be so it would be easier caring for the surgical site.  Alex had her g-tube surgery when she was 11 months old.  It wasn't a planned surgery.  I wasn't prepared for how it would "alter" how her stomach looked.  I didn't have very many pictures of her tummy without the g-tube and so now before every surgery it becomes an important thing for me to take pictures of her pre-surgery self.  PTSD?!?

Kissing me on my head has become a new thing she does daily.  

Alex had this gland surgery in 2015 and another in 2017.  I asked the neurosurgeon if he thought those surgeries would play into this one with scar tissue since the new incision was relatively close to her current scar and he dind't think it would.  The day of surgery it took a lot longer than they told us to anticipate.  Sure enough when the neurosurgeon came out to talk to us it did play a part and the surgery was more difficult than usual due to the built up scar tissue.

Once we got to see her in recovery Aaron and I were a little suprised at how big her incisions were. 

We had to spend the day in recovery to make sure there were no issues with the implant and by the time we took her home that evening she was her happy, smiling self.  She never ceases to amazes me.  

The VNS is similiar to a pacemaker.  The pulse generator creates low-energy electrical signals and the leads carry those signals to the vagus nerve. The device also comes with a handheld magnet.  When you bring it near the stimulator, it creates a current of electricity to stop a seizure or make it less severe.  The pulse generator is programmable through her skin to adjust the strength, duration and frequencey of the pulses needed.  The device was impanted at the absolute lowest setting to allow for her body to adjust to it.  A few weeks after surgery we met with her neurologist who adjusted the settings using a magnetic paddle.

As usual she handled it all like a champ. After implant, she had 14 seizures.  This month she has had 5.  We have another adjustment next week and are hoping March has 0 seizures.

Today is rare disease day.   I've stated it multiple times but it took 14 years to receive Alex's diagnosis and when she was diagnosed we were told she was 1 out of less than 100 people that had her Grin2B mutation.  That number is higher today, but still considered rare.  So today, we celebrate our bee and her rareness.  If you would like to learn more about Grin2B, click here.

Thanks for reading and re-engaging!