I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Thursday, November 30, 2017

Summer post

So here it is the last day of November and I'm just now updating from the summer!   I have SO many things to blog about but I want to try and keep things chronological.  Zach and I were looking at old Christmas posts and videos a few days ago and I realized how much I love being able to look back at pictures and relive lots of memories as they happened...no so much the bad ones, but hey, gotta take the good with the bad!! 

Probably the best part of the summer was going home to Aaron's hometown, Rochester, NY, and spending time with all of our family.  I had not met my niece, Emma, who was born the November before and it had been quite some time since we saw our nephew Jack and our Godson, Matthew.  My father-in-law had come a week before to pick Zach up so he could spend extra time with the family and his cousins, who he loves to spend time with.  Unfortunately right after Zach left, Aaron and I came down with some terrible virus and felt completely horrible.  We both made several trips to the doctor and just prayed that Alex stayed healthy.  Two days before we were supposed to leave my father-in-law called to say that Zach had hit his head while they were at an amusement park and some of his behavior may have indicated a slight concussion so we got in the car the next day and headed to NY a few days early.  We were thrilled that my niece, Abigail was making the trip with us and that she could help out with Alex, especially since we still weren't feeling great.

There was one day where the whole entire family got to be together - and I think it was a first!

Family!!!   Unfortunately we took these pictures after Aunt Helen left (Alex was clearly not in a picture taking mood!!)


Zach and his cousin Emma
Our silly and lovable Godson, Matthew

While we were there this kid turned 13!  
No make-up on mom thanks to double pink eye!

We had multiple birthday celebrations for him while we were there!

We got to spend a fun night out with my brother-in-law, Ryan and my sister-in-law, Liz

And we had lots of fun family time in the pool!

Uncle and Nephew Monkey See, Monkey Do!

We had fun one afternoon watching the horse races...

Me and Zach with my handsome nephew, Jack!

And I got to spend time with one of my favorite Aunt doing one of my favorite things....playing slots!  

Aaron, Abby and I took the kids to Lake Ontario one afternoon.

I love this picture of Alex and her cousin Abby so much

We were having such great family time but half way through our visit Alex started coughing and it was obvious she was getting sick.  Because Alex tends to go down hill quick and we had none of her "sick" supplies with us we knew we had to cut the trip a few days short and head home.  While we were really disappointed, we were really grateful for all the family time we had.

And once we got home, things did not get any better.  After a week of three different doctor appointments, an urgent care visit and an ER visit, we wound up in the Pediatric Intensive Care Unit (PICU).

Alex's breathing and coughing were disturbing and then she started vomiting....a lot...and technically she is not supposed to be able to vomit because she has a nissin fundoplication.  Alex was choking and vomiting every 10 minutes and she was constantly having to be suctioned.  Before the PICU admission Aaron and I were spending the nights on her floor so she could be suctioned every few minutes.  I have to say it was one of her scarier illnesses.  

It was a really tough few weeks and once we were finally admitted into the PICU Alex was worn out.

Alex wasn't trusting anyone while we were there
Obviously not a great picture, but you can just see how horrible she feels.

We were in the PICU for an entire week and it wasn't until day 6 that we were able to get her out of bed.
And this kid gets the best brother award.  It's hard on everyone when Alex is in the hospital but I think it's hardest for him yet he handles it like the seasoned pro that he is. 

He goes with the flow though and helps us make the best of it.  He's an amazing brother and he was the only one she tolerated being that close to her. 

So much love
And on day 8, she was finally home, resting comfortably in her own bed.  The sign in the background says it all....loved beyond measure.  

On August 21st there was the full solar eclipse.  It was a really cool thing to witness!!

We hung out up at the pool to watch it for a bit and although it wasn't a complete total eclipse for us, it was really neat to see how dark it got and to watch!

At the end of August our good friends invited us down to their vacation house for a week to say good-bye to what was a really crappy month!

Alex LOVES the beach and she was so happy to be there!!

It was really nice for Aaron and I to have some time to relax.

And Zach had a blast hanging with his buddy Alex and boogie boarding and body surfing.

Zach, his buddy Alex and my sweet little friend Jane

The boys had a lot of fun fishing off the dock connected to the house.

They also had fun with the kayak's Aaron and Barry rented for them to go up and down the channel we were on. 

It was so nice to see Alex happy and relaxed and not have to run from appointment to appointment for a few days!

Thank you Barry and Sara for some R&R time and fun memories.  We are so very grateful to all of our friends who support us and invite us to do things despite being a train wreck half the time!!

And the trip ended on a pretty high note despite Alex's bad mood that day (pretty sure she was mad we were heading home!) and I got to visit with one of my dear friends who happened to be visiting family.  While the visit was short, I was so happy to see her!

Paul, Nolan, Madelyn, Aidan and Carolyn
Because Alex was so sick and lost a lot of weight (she was down to 63 pounds), the surgeon said there was no way her weight and lung issues (don't think I added that she tested positive for 5 significant respiratory viruses while in the hospital) could support a surgery of the magnitude she was supposed to have on September 12th and so the spinal fusion was rescheduled.  Very bittersweet for me, honestly.  I am completely dreading every single thing about this surgery so part of me was relieved it was cancelled.  On the other hand, it's becoming increasingly clearer that Alex is starting to be in pain all the time and it just needs to be done.  I'm looking at a few options but right now we are on the surgeon's book for March.

Not having the surgery meant this happy and sassy girl was able to start school on the first day of school!  We held Alex back again so this is her final year in middle school.  Boy was someone happy to see her favorite yellow bus coming down the street. 

I love this face so much!

And Zach also started his last year of middle school.  I can't believe they are both in the 8th grade together. 

Zach is now officially taller than me....what's that Kenny Chesney song?  Don't Blink?!?

Here's hoping a few more posts make it to the blog before 2018!