Alex and Maddy

Alex and Maddy

Sunday, September 9, 2018

Update on Surgery

This week was mainly a week of survival. Alex's temporary PICC line wasn't functioning correctly and we were just trying to make it until surgery day. Our nurse (who is 7.5 months pregnant) got really sick and wasn't able to work all week. So I had a little extra do, but I also got some treasured one on one time with my sweet boy.

Alex's surgery was on Friday. Usually leading up to surgery his anxiety is terrible and he struggles to sleep and focus on anything else. This week he was so calm and did great. This is just one more sign of how very far we have come this last year. Alex's surgery went exactly as planned. We have had the same few anesthesiologists multiple times over the past year and a half. They have worked tirelessly to tweak Alex's safe anesthetics (which are VERY limited) to help him do as well as possible. He woke up feeling pretty good on Friday and has had some pain, but overall has felt really good. He even went to church today.

This weekend we have undertaken a project for him as well. Years ago, Alex asked for his room to be painted and he chose a BRIGHT blue. His room was also decorated with zebra decor because he loves zebras. At 14, it was time for a change. He chose a light gray color. Bruce painted all weekend and we hope to get all the furniture put back tomorrow. He has framed a bunch of his treasured video game posters that he has been gifted from his Extra Life buddies. Some are rare editions, some are signed, all are special. He cannot wait to enjoy his "new" room.
Sleepover in the playroom

The old room

In Progress

A lot less blue!

Mad and Zoey hanging out


All Contained!
Maddy's Zoo to tame her stuffed animals
Maddy had a good week. She was absolutely beaming each afternoon when I picked her up from school. She had an appointment this week to get new "pretty feets" (braces she wears for her feet). She chose a really cute Puppy pattern. She was so lucky on Friday to spend a whole day with one of her very favorite people in the whole world! When she found out she would get to hang out with Mrs. Mitchell while Bug had surgery she kept asking him if it was time for him to go to surgery yet! We are so lucky to have so many people who love us so well.

Mad loves stuffed animals. They were overtaking our house so we ordered a zoo. She was really happy when it came yesterday and Daddy found a few minutes to put it together when he took a break from Alex's room. 

Hopefully this week we are back to our crazy normal!

Ali

PS- If you would like to support Alex in his fundraising for Cook Children's Medical Center and Children's Miracle Network Hospitals click here. Alex has set a huge goal of $5000. He is well on his way thanks to some incredible donations! If you are unable to give, but would like to help, please share his link.

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