Okay so this weekend was unexpected. It was also full of so much fun!

Andrew wasn’t able to make it but mom and granny surprised us and came anyway! Shoutout to them for taking the bus 🚍 And then my auntie also surprised us the same day! Everyone was there to love on our little girl ❤️

Adrienne was showing off all of her cool toys. She played the drum with her auntie while I played the tambourine. We had a whole band at that point 😂 We finally got our hands on a little red wagon and Adrienne LOVED it. I rolled her around and around in circles in the Children’s Healing Garden. That wagon was one of the best things to happen to us this week.

Mom and granny stayed overnight so mama could have the night off. That did not go as well as we’d hoped lol. Adrienne was not having it without me, and on top of that the nutritionist had us adding walnut oil into her feeds and her tummy was NOT okay. She had been vomitting a lot that week due to the oil and that night she was clearly in pain. That was the last time we used walnut oil. It made her tummy hurt too bad and she ended up losing all the weight she had gained since being here by throwing up so much. We won’t be using that anymore because Adrienne’s comfort comes first before anything. Hopefully we find a new substitute for the oil.

Between the tummy issues and nurses in and out all night, she was in and out of sleep the whole time. So Sunday she was grumpy and exhausted. She slept for a good chunk of the day. 

But the moment she woke up, we had a whole dance party with our nurse and it was so fun. She even let us keep the strobe light so we can have dance parties whenever we want and Adrienne is going to be using that every single day I already know 😂✨
After that I talked to the doctors about getting Adrienne some melatonin to help her actually sleep through the night. I want yall to know my girl didn’t make a peep🌙 Which means I got some sleep too! Only 6 hours but hey, that’s better than 4 or 5 🙌🏽

Today we had to redraw labs for fatty acid testing because they don’t know what happened to the last sample. It either disappeared or there wasn’t enough. That was annoying, but she only had to get poked once and her blood had great flow again!! Fingers crossed this is her new normal because she deserves easy blood draws at the very least 🤞🏽

Other than that it was a great day. More wagon rides, more toys, happy girl doing her thing.
Tonight we’re doing melatonin again and hoping for another good night for both of us. Then we’ll see what tomorrow has in store! 💜