I happy to report that I think we have finally found the right dose of medicine for Ella. She seems to be happier most days and hasn’t had a breakthrough seizure in about a week. Her biggest obstacle now is her inability to poop on a regular basis (I know you all wanted to know that). I am at a loss. I am doing everything I have been told to do, and nothing seems to be helping. This is definitely something I will make sure is addressed when we head to Boston. Fingers crossed we stay on this positive path.

As for Boston, I spoke with Nurse Jane this week and she has assured me things are moving along in a positive direction. She said Boston Children’s Hospital had not opened up scheduling yet, but we would be called as soon as they do. We are still waiting on some records to come in as well. I am not the most patient person in the world, but have waited five years for this, so what’s a couple of more weeks?

CJ’s last day of first grade is tomorrow. They are having a virtual ice cream party at 11 am. CJ is super excited about that. I still can’t believe the year is ending like this. CJ adored his teacher this year and was really opening up and loving school. I am sad he didn’t get a proper good-bye. I know she will make sure she stops by and sees him in September, if she can. At this point who even knows when they will go back or what that will look like.

Jack is every bit of the energetic boy we hoped he would be. He keeps me on my toes, for sure. He’s almost nailed walking. Each day he gets more and more steps in a row, and soon I am sure he will be running around causing a whole new level of chaos. I often say how exhausted he makes me but I am thrilled at all he is doing, and am one proud mama.

The next two weeks brings some follow up doctor visits for me that I have been unable to have due to covid. I know that my wellness is equally as important as the children’s so I am making an effort to get all those in. (See, I have been listening to what you have been saying). At some point I might need a small procedure done, which will take me out of the game for a few days. Time to get my ducks in a row.

I have been working on trying to get Ella’s story on an Instagram page, to increase exposure and maybe get some new contacts and insight into what has been going on. It’s my understanding that the more Instagram followers I have, the more likely I am to be seen. If you aren’t already following my IG page and have an account, I would appreciate a follow. I am @zurlnick_five. Thanks in advance.

You guys are great and continue to reach out and check on me. It means so much. Sharing our journey with Ella was always something I was hesitant to do, but had I known the response would be this great, I would have done it a long time ago. It’s given me the opportunity to reconnect with so many people. That is a blessing all on its own.

Stay well my friends.

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