Day Five

Today was another great day! Ruby and I were blessed to have several visitors so the day went nice and quick. First grandma and grandpa Flynn came again. When Ruby saw them at the door she stood up and shook with excitement! Then Steve and Elliana, Aunt Becky, friends Jen and Emily Nowak and my co-worker/friend Jess. They are all so sweet and shower Ruby with gifts and me with chocolate!! She caught up on her sleep too and took two naps-one with her older sister, Elliana.

Rounds were similar to yesterday except for me politely suggesting a full GI workup. I really would like to get to the bottom of these episodes and why she is not gaining weight. They informed me that she will need to stay in the hospital until she starts gaining weight. She is currently 11 pounds (with the wrist splint on). That is the same weight as yesterday. They capped the IV late morning and want to see if she can keep the weight on without help from the fluids. A capped IV=happy girl and mom. We could take walks in the hallway without pushing the IV stand, she would constantly get twisted up in it, she would trip over it (because those of you that have met little Ruby you know she does not sit still), she would chew on it, yank on it and so on! She ate well but had a horrible day drinking fluids again. She only drank 1 ounce of water/rice milk total. And we are counting the sips she spit onto her shirt too! We are trying to incorporate foods with liquid just to get more in.

I reported that her urine has a very foul smell and the doctor smelled her and agreed. He called the geneticist to come up and smell Ruby. She did, and even through her bad allergies, she could smell her. Apparently foul smelling urine means a metabolic dysfunction so they are going to do a workup in that area as well.

The GI doctors came to see us today too. It was very informative! The plan is to start with an upper GI tomorrow but will have to put an NG tube in to do it (goes through the nose to stomach). They want to look at the nissen (name of the surgery she had on her esophagus) to see if it's functioning well. They will decide if they need to do additional tests based on the results tomorrow. They also want me to continue to give Ruby dairy products.  I am very hesitant after last night but I will continue with their plan. She had a string cheese today without reaction and no vomiting today. YEAH!!!!

Ruby continues to be a true joy! She has learned that if she laughs while I'm trying to put her down to sleep, that it melts my heart and I let her stay up a bit later. She plays hard and hoping she sleeps well tonight because the next few days aren't going to be fun.

Praying tonight that Ruby handles these procedures well and realizes that she is so very loved by so many people. Thank you all!!