Sorry I have not blogged in a while. Its has been a crazy busy week with Doctors and caring for Ellie as its been a rough recovery again. I am so grateful that Jake has been doing amazing in school all on his own. Also grateful for my Friend Tracy that has been quizzing him while driving him to Lacrosse Practice for the constitution test. Ellie this week has been tired and still vomiting but only once a day at the most. Which is improvement but still hard to see. Since her shunt was put in she has not been able to walk strait and her balance has been a little off. Friday night she had Lemont’s Got Talent at the High School. For those that did not get to attend make sure you get tickets next year because it was such an entertaining fun night. Ellie walked on stage and as she started to sing I saw her arms shake and I think I might have held my breathe the entire time she was on stage. At one point I looked over and my grandma and my sister where in tears hugging. I didn’t have the chance to loose it during her performance because I was so incredibly nervous that she was shaking and I just wanted her to be able to get through the song. It almost looked like she was using the microphone stand to hold herself up.. Ellie won the Lemont’s Got Talent competition. Ellie originally said she didn’t want to do it because she didn’t want sympathy votes and wanted to be judged fairly. Ellie was amazing but so where many other acts so I cannot tell you if Ellie won because Ellie is a super star in Lemont or based off her pure talent. What I do know is that on all the Talent shows there is always a popularity factor and people vote for the ones they love along with there talent. Ellie was so excited to win and in my heart she deserved to win. She killed it considering a week earlier she had Brain Surgery and is not back to herself and has parolization in the one side of her face still and a severe hearing loss since surgery. I wanted to thank Nancy Urban her Vocal Coach for coming out and playing piano and for being so amazing with Ellie. I feel very blessed to have her in our lives.
Once the show was over we met with Ellie and Nancy said she was feeling dizzy. Ellie said the lights made her dizzy. I guess we probably should have held out before pushing Ellie to do anything but honestly the trophy and being crowned Lemont’s Got Talent was the most amazing feeling for her and she truly needed that. I was so proud of her, she was so brave. It was a great night for sure. Thank you for everyone that came out and supported Ellie.
My favorite part of the night was these three girls sitting in front of me about 6 or 7 years old and they where decked out in Green. After Ellie was done the one girl turned and said something like “How did that make you feel” it was so sweet. Then the girls asked if they could move in with Ellie and I. I thought for a minute and said “no, but Ellie can move in with you” These girls where amazing they look up to Ellie like she is a super star. I think they might be Ellie’s biggest fans. They even took photos with Ellie after. They where such sweet girls.
Since Friday Ellie has been laying around allot not feeling well. We did get her to my Step-Sisters house for a night of fun and that was great. I feel like Ellie is probably bored with me since I have been with her almost 24/7 for two months now. I feel like I’m old news and anyone new that does something with her she seems to have more energy for. Glad she was able to get out a little bit but it did wear her out and she slept most of Sunday.
Today we went down town to Lurie’s for a MRV test. Ellie started a new medication today and it seemed to wake her up a little more. I have prayers that we just keep moving in the right direction. Tomorrow we meet with Ellie’s Neuro Surgery and Neuro Oncologist for results of the MRV and a checkup. I’m sorry I have not blogged like I said its been so busy around here. Hoping for things to slow down a little. Thank you for everyone’s love and support. Today I went and got a coffee in Homer Glen and the guy working there was wearing a green bracelet. Its so cool to see the green everywhere. I hope we can keep spreading the word #EllieStrong as we start Radiation on April 1stwe will need all the love and support we can get.
A mother with a battle ahead of her.