Today gave me renewed hope! For the first time since we have been home from the hospital Ella had no seizure like episodes, or episodes of frustration. A huge win on both in Ella’s complex world.

We gave her a third dose of medicine this morning while she was sleeping and around 9:00 am she woke up on her own. (I wish I could say the same for her little brother. I was blessed to see his smiling face around 6 am.) Ella is always so thirsty in the morning so when I brought her down I gave her some water before she ate breakfast. She happily drank it all and inhaled her waffle. After breakfast I sat with her for awhile. She was laughing happily on the couch, moving around like crazy, and making so many noises. All three of these things we have not seen together in a very long time. She honestly hasn’t been that vocal in months.

I brought Ella upstairs to get her dressed before Dani came and wanted to see if she would stand for me. The last few weeks she has been fighting hard. She hasn’t been bringing her feet down on her own and once I would get her in the standing position, she would get an extreme look of fright on her face and one of her arms would shake. It was heartbreaking to watch. Even though she seemed tired today, she also seemed more relaxed. I thought I would give it a shot.

I held her up and she immediately put her feet down, like she has been doing it with ease all her life. I was shocked. Not only did she put her feet down though, she was laughing and happy while doing it. It was amazing. I had read that where she was having her spikes was the part of the brain that controlled balance, and wondered if the Keppra had helped better control that. I can’t imagine anything else that would cause such a change in her behavior. The icing on the cake was when I went to sit her down she actually used her hand to brace herself. She has never shown that reflex either. That movement did scare her a little bit but she bounced right back.

We got changed after that and I put her in bed because she looked exhausted. Dani arrived shortly after and sat with her for awhile. She was rolling from side to side and at one point rolled on her belly. These may seem like insignificant things for any other five year old child but for Ella, they are huge. She NEVER rolls on her belly. She was also sitting up in bed. That is not something she does frequently, and really never unless we really prop her up to give her a head start.

Dani fed her lunch, she took a little snooze, and then they went for a walk. She did great. Instead of sitting back in the stroller she was sitting up taking everything in. She was friendly with the neighbors and truly enjoying her time outside. She even got to see her buddy Sophia, which totally made her day. Dani did say she was getting a little cranky so she did cut her outside time short.

When they came back in she devoured her dinner and we all got to spend some time hanging out. Ella was in such a great mood. We did some more standing, with the same ease as before, and tried a few other things that Ella normally doesn’t tolerate well. She still wasn’t feeling the quadruped position but didn’t resist anything else we threw at her. She was such a trooper.

We could tell she was still pretty tired, and because Ella can break at any moment when fatigue sets in, Dani got her ready for bed and settled in before she left. CJ was hanging out in his fort, Jack was sleeping, so I went and spent some time with my girl. She had a different kind of day today, but I would without a doubt say it was one of her best in a long time.

The Keppra has some side effects that we are already seeing, and we know it’s not going to be an overnight game changer. Today we saw some positive things from Ella and I am holding out hope that this is the beginning of many amazing things. These episodes have opened the door for more testing and probing into seeing what might be causing them. Perhaps me losing ten years of my life that morning I found Ella will be our greatest blessing yet?

The unknown is scary but we will continue to take things one day at a time, and accept and welcome wholeheartedly all the love and prayers you are sending to the family. Despite this setback with Ella, we still have so much to be thankful for.

A HUGEEEEEE thank you goes out to my dear friend Anna. She hooked me up with some goodies that will sustain me for days to come. She is one of the most amazing people I know. Her ability to always remain optimistic inspires me every day to fight for answers and dig deep for strength, when I think there is none left. I love you girl! I cherish our friendship more than you know.

Continue to follow our journey on IG @zurlnick_five

Or

Sign up with an email at the bottom the homepage

Or

https://www.facebook.com/groups/545639302765561/?ref=share