Roller Coaster Week...
Yesterday Ellie had a busy day. Ellie ate a huge lunch; it was really excited to see her appetite back. Because I was so excited I didn’t slow he down or stop her. We then got up for a body shower. Still can’t wash hair but she is doing a great job sporting an eighties high pony tail. During our shower the ophthalmologist popped in and so I had to quickly get her out and dress her, got her back in bed. While the Ophthalmologist was doing his exam Ellie began to vomit. She vomited her entire lunch. Then I realized I should have slowed her down so I felt bad for not slowing her down. I was actually surprised by the Ophthalmologists reaction. This obviously is the first time he saw vomit from a kid up front. He couldn’t get out of the room fast enough. He was like ok we are good no tape during the day anymore, bye. So out of all that the most exciting news that Ellie doesn’t have to keep her eye taped all day, only when she is sleeping.
Then she rested a bit and we ate a much smaller dinner. Ellie even got up and did her walk. As we walked past the nurses station I told Ellie
“slow down I can’t keep up with you”
She told “Don’t worry mom I got this”
Then I said “I know you got this, but I don’t. I can’t keep up”
All the nurses where laughing at us.
Ellie sat in a chair for a long period of time.
Ellie had the nurses cracking up with her smart remarks all night.
We also had a visit from a magic group that showed Ellie some magic tricks and it was awesome seeing her facial reactions as she was shocked and didn’t know how they did the tricks. Before they left they showed her a card trick to do for her cousins and brother and left her with a deck of cards. It was so nice to see her in great spirits.
We also got to watch the live feed of the Allegro Ellie Benefit. Chanel 9 news was there so if you see the EllieStrong Benefit on the news let me know. I cannot thank the Kids from Allegro and Lori Gardner for putting together the show. My family went to support the show while we Sat in the hospital. My nephew filled in for Ellie and I must say he had me in tears during his performance, especially the second. The kids created the show and I felt did an amazing job. You can see the feed of the first show on Elliestrong facebook page.
At the same time Ellie was being honored and awarded a check at a Action Sertoma foundation on Southside. So luckily my dad was able to attend that for me. I am so blessed to have so much love and support. I cannot thank them enough along with all the people out there that have stood by us through this and have shown us that we are not alone in this fight.
Ellie slept ok she said it was hard to get comfortable. This morning the Neuro Team came in and told us if she gets up eats and walks they didn’t see why we could be out of here by 12noon. Then they left Ellie woke up and complained about head pain the most she has had yet. Dr. Dapatri came in and we now are going to get a scan and see what is happening. So for now I am waiting for my Mom to get down here, I am going to hop in the car while she sits with Ellie I will go home and get ready just in case we are stuck here until just before the show. I need lots of prayers that everything is good and we break out of here early enough. I figured if I get in my car and go home to get ready then she will be released. That’s how life works right. This has been a roller coaster of emotions. Just waiting for the adrenaline to stop and my MS to kick in again. For now, we are grateful that a glimmer of my Ellie is back she has energy and is a crazy speed walker. It warms my heart because it reminds me of both of my grandmas when I see her walk so fast. My Grandmas therapist in rehab said my grandma is walking too fast and loosing her balance. So for now we wait. We wait for Ellie to wake up, get a scan, Eat, & Walk.
BTW I did get to visit my favorite place in the hospital and the busiest morning place. I got me some of my favorite Ice coffee to get me through the day. I took a photo but I don’t think you can get the idea from this photo how incredibly busy this DD is.
I am praying so hard because we have Hamilton Tonight.