We are Back and Ready for Adventure!!

Hey everyone we are back!! I have a goal of posting a lot more and just in time for summer adventures!! But first a quick catch up. Some good, some bad and some amazing!!

First, my last post included issues with Tubie’s gtube site. I am happy to say that the new button and a compounded ulcer medication has made all the difference. No issues in months!!

Let’s start with Christmas. I have no pictures from Christmas morning because Tubie was admitted on December 20th and didn’t come home until the 26th. She had norovirus that she shared with the family. While in the hospital she picked up RSV.

Tutu ready for a Christmas party.
Tubie making the best of being stuck in the hospital for Christmas.

Moving on to 2019 we had some big moments. Tutu had her first sleep over!! She had a blast and wants to have more. She stayed with a sweet friend while Tubie had a follow up MRI. Her tumor is staying stable and we only need them every 6 months now!

Tutu and her friend playing at her sleepover.

Tubie received her TinySuperheros cape. This is an amazing group that is providing capes to the smallest superheroes in the world. They work off donations to make sure every child who deserves a cape gets one.

Next one the list is my mistake. In a moment of exhaustion and getting the girls ready for bed, Tubie received one of her meds twice. This got us a night in the hospital for observation. She was fine but they needed to watch her heart rate.

She gave me big attitude over this mix up.

Tubie was in a local campaign for the Board of Developmental Disabilities. She did awesome especially since we went to the pediatrician after and she had a double ear infection.

Shooting the commercial with the superintendent of the Board of DD.

She is also on a few billboards in town.

Next are a bunch of pictures of the last few months. I thought they were cute so sharing.

A friend captured these great pictures at a birthday party. I love them so much.

She didn’t want to smile.
Tutu’s school field trip to an art center.
These shirts came all the way from Australia. They are perfect.

Tutu got to go visit Grammy with Daddy.

Tubies first ride in the Minnie Mouse car.

While Tutu and Daddy went to visit Grammy in Florida, Tubie was back in the hospital with another stomach bug. Her blood sugar just can’t handle them. But this time we had to get creative because TUBIE IS MOBILE. She moves in her own way that is not quite a crawl but she is all over the place.

Because she can move she was not happy in the crib.
She also managed to untwist her IV this stay. She is rotten.

Some fun stuff going on with Tutu! She is prepping for her first dance recital. She has two dances. Ballet and Acro. I can’t wait to see how cute she looks on stage. She also is done with school for the summer. The school year flew on by. She will be going to preschool again next year for a few reasons but mostly it will be the best fit for her.

Ballet Costume
Acro Costume
Visiting her school for Mother’s Day.
Last day of school. Always goofy.

And the big things going on with Tubie. We found a formula she will take orally. She is taking half her calories by mouth!

Also she has finally decided to give standing a try. The last few weeks she has started pulling up and standing with help. She still hasn’t mastered the couch but she stares at it trying to figure out her best course of action.

Practicing standing at PT.
Working on pulling herself up to knees.
My first picture of my girls standing together.
I am going to be honest. I have no idea what she is doing.

And that catches everyone up to this point. We have a great summer planned and I am hoping to get on here often to post.

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