Alex and Maddy

Alex and Maddy

Saturday, December 6, 2014

Incredible Month

What a busy crazy, fun month it has been!

We started off November celebrating Maddy's first birthday with her little friends and some of the important people in our life. We enjoyed showering our little girl with love and she had so much fun at her Kindermusik party!  Aunt Jenn-Jenn got to come and spend some time with the kids too which was fun. We also got some girl time shopping, getting pedicures and going out to dinner! As soon as Maddy's party was done my focus changed gears and we prepared for our first family vacation in a long time. Earlier this year I realized it was incredibly important to me that we have memories with the kids from vacations. We have not had a family vacation (that was not visiting extended family) since Alex's Make-a Wish trip. I set about planning a trip to Disney and Universal. Bruce can tell you, Alex and I were just a tab bit excited as it is all we talked about! On November 15th, we took off for a week in Orlando! I cannot begin to tell you how incredible this week was. Both kids had such an amazing time and Bruce and I did too! I had so many pictures (shocking, I know!) I couldn't decide which ones to post. I could go on for days about all the fun we had, but I'll just share pics instead!
Hogsmeade
 

Hogwarts Express
 

The Castle was GORGEOUS!
 

Hogwarts

The dragon on Gringott's Bank

Alex with the Wandkeeper at Ollivanders

Animal Kingdom

Animal Kingdom


Epcot


Magic Kingdom

Hollywood Studios

 
 
We cannot wait to go back! As you can imagine, we came home exhausted! I was glad to have a quiet Thanksgiving and a slow week to recoup!
 
 
I have had a few people ask where we are medically...
 
Alex- Overall, Alex continues to experience the most stable time of his life. We are still learning to manage his Adrenal Insufficiency. It can be dangerous (life threatening) and make him feel awful so we are learning how to adjust his medication in different situations to help him. Otherwise, we are keeping things pretty much status quo. There just is not much we can change at this point without major interventions that we are not willing to consider at this time. He amazes me daily with his strength and bravery. His life is so hard in so many ways, but he chooses to be joyful. He blesses everyone he meets with his huge personality and fun-loving spirit.
 
Maddy- Oh, my Maddy Moo. She is such a character. Anyone who has spent time with us will tell you she is not lacking in personality either. If it is possible to be a drama queen at 13 months, that would be my girl.  She is sweet and loves to cuddle, but she has a fiery temper and lets you know when she is not happy. She has started putting her hands on her head and throwing her head down on the ground when she is really upset! She packs a punch for such a tiny little thing. She is itty bitty at only 16 lbs, but she has enough personality for someone much bigger! We are still trying to figure her out medically. Her hematology counts are HORRIBLE. (Last check her neutrophils were 20 when they should be over 1500), but she is holding her own. Our biggest struggle right now is developmentally. She is severely delayed. She is still not able to roll belly to back, she can't crawl or even get on her hands and knees, she doesn't bear weight on her legs without assistance. For the last several months we have been doing physical therapy twice a week. I am trying not to look at the big picture, but instead focus on the progress she has made. We will be traveling to Houston in January to have an MRI of her brain to see if that gives any answers. In every other way she is developing right on track. She is so smart! She is starting to talk. She actually talks non-stop. But we understand about 10 words. ;) She is loving Christmas and especially the "pretty trees".
 
Alex and Maddy continue to be as close as possible. They would choose to be together every minute if they could. Alex is the MOST patient older brother. Maddy adores him and lights up when she sees him.
 
Thanks for reading, if you made it this far!
I wish everyone the happiest of Holiday Seasons!
Ali


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