Fall & Florida

It's been since June since I've done an update!  Do you know what that means?  It means that we are living life and having fun!

The school year has started.  Both girls are doing great!  McKenna has another AMAZING teacher this year, and loves school so much! Following softball rec league, she made All Stars, and totally loved it.  She is now currently playing on a travel soccer team, and is having a blast!  Basketball is starting in the next couple of weeks, and Jeremy will be coaching again this year.  They are both excited to get started!

Macy loves middle school!  I was so worried about the change, but she's rockin' it!  Honestly, one of my big worries was having her in a different school building than me.  I loved the easiness of checking on her when needed, and having the school nurse call my classroom if they needed anything or had any questions.  She had some Celiac related stomach issues this year, and I had to end up leaving school to go get her and take her home.  It ended up being short-lived, so we were thankful for that.  She made the robotics team, and has her first competition next weekend.  She is also busy with Girl Scouts, Student Council, and horseback riding.

We just finished a two week fall break, and just returned from a very relaxing week in Florida.  It was so nice spending time with my parents, grandpa, and all of the family friends that live there.  Some of our highlights include; a couple of visits to the beach, touring an orange grove, taking the boat to an island named "Egmont Key", taking the girls to the greyhound dog races, Jeremy and I getting a "date night", and going to "coffee and donuts" in my grandpa's neighborhood.  It was a great trip!  We are so thankful for everything my parents did for us while we were there!

SO....I had this post typed for a Macy Medical Update.  I didn't post it because I was waiting on some lab work to come back.  I will first let you read the original post.....here it is:

So the most asked question is....."how is Macy medically?" She is doing great!  Actually, something really funny happened.  Macy had a dentist appointment a couple of months ago.  We left right after school, headed over to the dentist office, checked in, waited, and then they called her name.  She stood up to go back, and then the hygienist asked, "was Macy pre-treated?"  Ummmmm....NO!  Ahhhhh!  I totally forgot to call the cardio or pediatrician for her antibiotic. I have NEVER done that before.  I could not believed I dropped the ball on that!  They did x-rays and a check, but no cleaning, and we had to return the next week, "pre-treated" for her cleaning.  I was so mad at myself, and complained about my failure to Jeremy and my mom.  I was on the phone conversation with my mom, that she said something that turned my thoughts about the situation around. She said, "you realize what that means, right?"  I thought about it, and I responded with, "no".  She said, "you actually thought of Macy as "normal".  I DID!  I DID!  I thought I was just taking my "normal" kid to a dentist appointment.  That was a great feeling to know that we are in such a good place right now, that I wasn't consumed by her medical life.  These breaks are appreciated!

We just had labs done this week.  The lab screwed up and didn't take all the labs, so we had to go back to get them finished.  Grrr!  But thankfully she is a champ at lab draws.  They are running CBC and Ammonia levels.  This will give us a glimpse of her liver health. We will head back to Chicago in December for an MRI.  I am always nervous during test times, but I never try to predict.  What I do know is that Macy seems really good right now.  She seems healthy, happy, and growing! 

So now for our update....just a few days later.

I thought Macy was doing great!  Don't get me wrong....she seems good.  Inside however, things don't seem to be going so well.  Many of Macy's labs came back abnormal.  I just found out on Sunday.  I touched base with Chicago today about a plan.  The main concerning labs were her low platelet count, low white blood cell count, and high ammonia levels.  She had a few other too low, and too high labs as well, but not too much that points in the directions of liver and spleen health.  However, the platelet count, white blood cell count, and ammonia levels might very well be telling a story.  It is definitely concerning.  Among the unique Abernethy patients like Macy, the team in Chicago has seen worse labs.  However, her labs are worse than in January.  Strange that things seemed to improve in June and worsen again.  This definitely caught us off guard.  I was expecting great labs...as you can see from my original written post.  This just sucks!  Can't this kid catch a break?

So the plan is to watch her closely.  If anything changes with her energy level, mental state, etc. we will need to do something sooner.  Otherwise, more labs in November and MRI in December.  So fortunately we haven't moved too far from the original plan, but we are living the next couple of months with a little more caution that we planned.

Jeremy and I have chosen not to worry Macy with the change in blood work.  If more changes occur in November, we will let her know then so we can prepare her for possible intervention if we need to.  Until then, we are going to think positive thoughts!!!

Pray, pray, pray for improved labs and good news during from the MRI in December!

As always, thanks for checking in on us!