Last night went so much better! She slept through the night!! Really!! She did talk in her sleep some and woke up twice asking for a bottle but otherwise actually slept through the night, she didn’t stay up for any period of time crying for milk. Such a praise! She did have a little bit of a struggle in her 1st feeding therapy and was gagging but by her next therapy she was good.

She got to go into the playroom with a Child Life Specialist for 30minutes of scheduled time w/them today and she enjoyed it I think. She did great in both sessions of occupational therapy. They did have a physical therapist come in and assess her, mostly to check out her feet, but don’t believe she needs anything corrective, just shoes with good arch support for now and for us to keep an eye on it.

She’s so excited! She did so great during her speech therapy today and afterwards that her SLP gave her a container of crunchy Cheetohs to take back up to our room to eat after dinner tonight as a snack. She was grinning from ear to ear. This is a big deal! She’s not been allowed to take one bite of food outside of feeding therapy till now and it’s hard on her to see food all day on our floor. There are 3 wards (feeding, rehab, and pulmonary) but people are carrying food around all day and mostly on our floor. Even some of the kids with the NgTubes and G-tubes are eating food or other kids on the feeding ward for other reasons, they’re eating food in front of her. Family members are going and bringing snacks, pizzas, burgers, and other take out back to the rooms constantly and it smells (and sometimes they eat with the door open). She’s interested in even trying it at this point or at least being offered the food and isn’t. She’s hungry, her tummy is growling & grumbling all the time, but she just has to stay hungry. I just have to tell her “no” all day long. Same with the nutrition station when I get my icewater, everyone is in and out getting icecream, crackers, milk, and whatever else . . . she wants to know if she can have milk or crackers or icecream and I have to tell her “no”. Even when I can hear her tummy grumbling so loud and she’s crying b/c she’s so hungry. I have to tell her the same answer over and over. I can’t even tell you how I excited I have been about her snack tonight. Yay, yay, yay!

Posie was so excited to receive a lot of mail today. She got a card from her grandparents, aunts, uncle and another special lady. She just lit up the room w/her smiles as I read her each word of each card. It’s so sweet to watch how grateful she is and delighted in hearing special words.

Posie has worked hard today, she’s meeting milestones I’ve longed to see for years. She’s getting comfortable eating a lot of things and she’s mastering using the utensils they give her to eat with. She’s always done pretty well with utensils but she’s doing better. She seems to be embracing what she’s learning, but there have been some minor things here and there that indicate there will be some struggles. I think going back home will be a pretty hard transition but I’m praying for the grace to see us through it.

Tonight we showered and I got her ready for bed but her little self couldn’t wind down and she insisted her milk was sour. We went back and forth for a long time and she kept gagging. I tried it (it didn’t taste good but she needed the meds in it). Eventually I started shaking it up and singing, “Shake, Shake, Shake, Senora!” to her and she looked at me and smiled. I told her that it was a song and she looked surprised. I asked if Miss Jo had ever danced to it for her and she shook her head. So I told her Miss Jo loved this song and played it and she was so excited that she drank 5oz for me.

Her OT brought us a “work” calendar for things we need to do over the weekend and record and brought a calendar for Posie to have so that she can fill it up with stickers to know when we’re coming home to make it easier on her (she keeps saying “I will stay for 10 days then I’m going home!”).

I just can’t wait till she falls asleep. I love her so much, I’m just one tired mama. We’ve had a lot of hard moments today ( a lot of great ones, too) and it’s coupled with the searing pain I am dealing w/on a day to day basis. I absolutely can not wait to have surgery, I’m so ready to not hurt like this.

Tomorrow begins the weekend . . . no speech therapy, no occupational therapy and no child life therapy. Plus she has lunch half an hour later. This is hard b/c she won’t be as distracted from the hunger pains in her tummy. Please pray for Posie!