Its been a long and exhausting weekend and its only Saturday night. Friday was my birthday, I was able to get breakfast with some friends then spent most of my day cleaning up vomit from Ellie. I was able to get her to one activity, rehearsals for the Gelsosomo's fundraiser coming up on Tuesday night. Ellie will have a solo, please consider coming out and showing your support. It’s $20 for all you can eat pizza and improve from the Allegro Dance and Music studio, two shows 5:30 & 7pm including Ellie. After her rehearsal she then threw up again so we left her at home while we went to the rehabilitation home to have dinner and celebrate with my Grandma, and some family. When we arrived back home about 8pm Ellie was still just laying around and then began to throw up again. We contacted the Neuro Surgery Team at children’s and they told us to come down.
My friend came and got Jake for the night, we packed a bag, just put our coats on and received another call from Children’s. During all this Dave, Ellie, My Mom, & Dave sang happy birtheday to me and put candles in for me to make my wish. Bet you can guess what wish I was making. They got ahold of Ellie’s surgeon and he wanted Ellie to stay home restart the medication that makes her tired ALL the time, but empties the access water and see how she would feel by Mid Saturday. A dear friend of mine came by to give Ellie a massage this morning and after that Ellie basically has been sleeping and laying on the couch since. Luckily she has only vomited once so we are waiting it out another night.
I’m just so tired, I can’t describe the feeling but the emotional roller coaster has my MS acting up today. I feel like I am constantly nagging Ellie to drink more, eat, or wake up for a bit. She has started snapping on me and I don’t blame her. Who wants to be nagged when you don’t feel well, but on the other hand everyone is telling me I need to ensure she doesn’t get dehydrated and I get that. I am just so tired of being the bad guy. The one that has to keep on her. I just need a vacation from the reality we call our life. As I write this my eyes fill up with tears because I just don’t think its fair. Ellie has been through so much already and has so much more to go through and now this.
Every time I get in a funk, like today, I go on Facebook and go to the Elliestrong page and it reminds me to keep strong. Thank you, It is incredible seeing all the people, animals, Brett Favre, Theater Groups, Las Vegas National Friends, Sister Jean, Kids in other areas supporting the mission, Andrew McMahon, Fire Departments, Police Departments, Businesses, Phil Vassar
NBC News Cast, Ashley McBryde& Colton the Bachelor wearing an Ellie Strong Band, the list can go on forever and its so exciting everyday to see how many amazing people #EllieStrong has reached. Driving around town and seeing Green Ribbons and Green Lights are another pick me up when I need it. Green Light bulbs are at Lemont Ace Hardware here in Lemont and they will donate $2 to Ellie for everyone sold.
We have a huge week ahead of us so I need prayers once again that Ellie feels better and can get moving and grooving this week. Tuesday is the Allegro Studio Fundraiser at Gelsosomo’s Pizza, Wednesday we have an important Eye Doctor Appointment and then we get to go see Hamilton, Friday is a very important appointment with the Proton Beam facility & Ellie has a school dance depending on how she feels, & Saturday is the Lemont St. Patrick’s Day Parade Ellie will be the Princess in the Parade. On top of these busy appointments and adventures Ellie will have some school, tutoring, & Therapy.
I don’t know how to thank the thousands of people who have loved, prayed, and supported us through this journey. I always feel like I need to do more to thank people and hopefully at some point Ellie will get a little better and our schedule will open to give me more time to thanking people. For now, I hope and pray we can keep Ellie out of the Hospital because some of her friends planned a fun night tomorrow for her that she is excited about.
I included a few photos below of the upcoming fundraisers including Gelsosomo’s, St Baldricks, then also the Allegro group when Ellie went for rehearsals this week, And Ellie currently how she is feeling, and a collage of some of the facebook EllieStrong page supporters. Also updated lists of places you can purchase your #EllieStrong Bracelets. You can also get them online if you do not live close at www.elliestrongnationwide.com
Thank You Again
A mother with a battle ahead of her.