Lil’ miss was not pleased with me last night and I was so thankful that she fell to sleep in a reasonable amount of time. She woke up often during the night telling me she had bad dreams but not sure what they were about. At one point I climbed into her bed with her till she fell back to sleep, then slipped back over to my bed. Is it time to come home yet?

She did really great in all of her therapies today. We were going to go to Sonic this morning but there was a schedule change with another patient and so we weren’t going to be able to be off campus b/c of time restraints so we stayed in and are planning on it for another day. But they had me feed her myself while the SLP went into the staff room and observed us on security cameras. She did pretty well for me, but we had some major meltdowns today and I was just done with it all. In fact, things were so bad that nothing flowed as it should today. I was late for every therapy. I missed the Prep Class and the nurse had to come to find me and tell me they were looking for me.

Then the SLP had to come down there and get Posie for speech therapy (15minutes late). I just couldn’t get it together today. I couldn’t work, couldn’t think, and didn’t want to be bothered with anyone. Right before Posie finished up with speech therapy I came back to the room (after Prep Class) and called my husband and said, “I’m done, just come get me!” He knew that he wasn’t supposed to come get me, he knew I was upset, but I needed to tell him how impossible his child was and how I wasn’t going to be able to make it another day in this place. Right then I got a knock at the door. My best friend & her family were on the other side of that door. I had no idea they were coming, they live in Georgia and I’d never have thought they would be here. My heart leaped out of my chest and I told him, “BYE!” and hung up on him.

My heart needed to see them so bad. To have the hugs and kisses, to have laughs and talks, to have the reassurance and encouragement. They’re my family and I love them so dearly. I thought so much about her this week that I wrote her a letter a couple days ago and it should be in her mailbox when she gets home. How precious to me . . . it’s no coincidence at all. I’m so grateful for the Lord blessing me with them and with this precious gift today!

Everything got better after they were here. They left when we went to our next therapy session, then I worked till she went to work with Child Life and she had feeding therapy and then we went outside to play with the new bubbles that she got from LaShawna. She’s wanted bubbles the whole time we’ve been here. For a month now she’s watched other kids playing with bubbles outside and I knew she wanted to play with them too. She was so happy, she played with them for such a long time, till she was so red and I determined it was time to come inside. She got some mail today, some packages and several cards. She was over the moon. This couldn’t have happened on a better day b/c today was impossibly difficult. They said she’s likely feeling like she’s loosing control, because she’s always been able to control food/etc, and is now getting conditioned to eat and she doesn’t have that control anymore and she’s feeling some repercussions from it. So we’re just trying to work with her through it.

The Prep Class was awesome! They showed me everything I need to have to be able to keep the most successful food log. I’ll have the recipes to take home (and brands) for Posie’s meals, and know how to divide stuff up most specifically for calculating different portions of the meals. Stuff gets measured differently depending on how it’s prepared. And they had Family Dinner Night again tonight and guess what? I got to eat!!! A Child Life Specialist went down and got me a meal and brought it up to my room!! She brought it around 5:55 and I ate it around 7:20 – so that’s not bad at all (Posie fell asleep early, WooHoo!). It was cold and hard and DELICIOUS!

I believe that I will be leading all of our meals during feeding therapy from now on. It’s kind of intimidating. It’s kind of awesome, too. I can’t believe we’re down to about a week till we come home! I’m going to miss some of the faces here. And in a strange way, I’ll miss our “home”. That’s what the staff here calls it. Well, some of the staff will call it a room, but a lot of the nurses/techs call it “home”. “If you’re going to be home later I’ll stop by and bring those papers.” “Are you going home or to the park?” We hear things like that a lot. I assume it is to help the children/families to feel more at home and actually it has. I know the days are going to get longer and tougher. We need to address a lot of behavior stuff while we’re here. We’ve made so much progress in occupational therapy and speech therapy. She’s eating so many foods and doing so good. She’s even socializing a little bit more. She’s on a higher dose of melatonin and actually sleeping, too. She’s not having headaches and issues so healthwise, things are doing so great. And we can focus on the behavioral stuff, which needs to be addressed b/c SPD and her other neurodevelopmental disorders cause behavior stuff we need to be able to help with. Pray for me. Oh, and Pray for Posie!