So yesterday Ellie ate so good, she had a Chocolate croissant, Dunkin Donuts Chocolate long john two of her favorite, then mac and cheese, bread sticks, a little salad for lunch and actually drank enough to be taken off her IV. Ellie had a shower and I had to document Dave actually drying her hair. He had to take over for me so I could go talk with the nurse. Ellie’s vision is still a concern but she is trucking through it. She is just closing one eye and watching TV through the other eye. We also need to tape her eye shut at night because it wont shut on its own and is becoming very irritated. She is now on Eye Drops to help her one eye.
Grandpa Steve and Mary Kay came to visit and lifted all of our spirits. We sat in the family room for sometime and enjoyed the comical styles of Grandpa Steve. Dad had Ellie cracking up, shocker, unfortunately didn’t get it on video. I did get her refusing therapy I was hoping I would have gotten her to sing for us. She sang earlier for me and sounded great. We do know that Ellie’s eye rolling is in full affect. She has no problem at rolling her eyes at my Dad, Doctor Goldman, & Me. It was so excited to see Ellie up and for so much time. I told my dad he should be a comic that goes room to room in children’s hospital to cheer families up. Mary Kay said yes he should dress up like a clown.
Me “You would need new material every week.”
He said “no, there will be new families every week”
Then I explained to him that some families are there for much longer. So being my dad he said its ok I will workout my material in the adult hospital with the alzheimer's patients they will forget it by the next time I came. Oh Dad, thank you for bringing joy to our days here in the hospital.
During our visit in the family room Ellie informed us that she has lost all hearing in her right side. So that prompted a call into Neuro Surgery who came to see her. This prompted a MRV (a quick MRI to see if there where any changes to her tumor). Then they called in the ENT for more testing. They didn’t see anything in the room but are taking her for more testing today. I feel like we take two steps forward and then three steps back.
My Mom and Step-Dad came and spent the night with Ellie so we could get home to get a good night sleep and so I can spend some time with Jake. We drove home in the mist of the snow storm exhausted and I couldn’t wait to hit my bed. I was greeted when I walked in the door with a super happy Jake and two super happy puppies. If only I was always greeted that way. By the way thank you Schwarz for taking Jake for a fun day yesterday he was so excited to tell me all about it. Unfortunately, I only able to spend a little time with Jake before I had to hit the hay. Dave stayed up and spent time watching their favorite show The Office.
I slept so good last night but woke up exhausted, legs are week I think my body said its ok now its time to take care of you. Unfortunately, its not yet time we have a long road ahead of me and then I can poop out after this. Jake is really struggling with me not being home and not having his sister at home. He is actually coming to visit Ellie with us today, I hope Ellie’s condition doesn’t freak him out as its not what his sister normal looks or act like.
Last night my Step-Dad brought a card that him and my Niece Kailyn worked really hard on for Ellie. Ellie did not hold back as she has not lost her critic personality. She had us laughing. She did really enjoy It she even had us hang it below the TV so when she watches TV she can see her puppies. Thank you Kailyn Ellie did truly love it.
We are now on our way back to hospital a little later then we wanted to but we had things to take care of around the house and had to do laundry and pack. I figured if I show up at the hospital with everything we need for a week then they will let us go either today or tomorrow. It’s just the way things work. Thanks again everyone for all the love and support.
A mother with a battle ahead of her.