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.
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!
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.
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.
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.
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.
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.
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.
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.