The Facebook memories evoke real life memories, and because of the things we've been through with Annelise these past almost threeeeeee years, and the way my own words remind me, we know how safe we can be in the arms of the father when the world does not seem safe at all.
Seizures don't make me feel safe. The Lord put people in our lives who also deal with seizures and live full and wonderful lives, so that really helps us to not feel defeated. Having a responsive neurologist who returns my call the same day makes me feel that we will be on the right track with more info soon. It isn't uncommon for our friends with Trisomy 18 and 13 to need more help controlling seizures as they get older. It's also very common for more seizures to pop up with illness. These seizures don't look anything like the ones she originally had in the NICU. We haven't seen one of those scary ones where her arms go stiff and she stops breathing since
Sept. 14, 2019, still in Omaha! That's a great big win to be seizure free for so long! I'm grateful and trust that God will provide what we need for the next steps. Im also bummed we have to start the seizure-free count all over. We're praying for them to go away completely as the antibiotics keep doing their thing. I've been both overwhelmed with what else could be wrong that I just don't know about yet, and also overwhelmed at God's gracious gift of parenting this little girl who is just perfect. I mean, I could list off the things that are wonky thanks to that extra chromosome. There's a list in her medical record... but still look at her, God made her absolutely perfectly.
She is more tired and sleepy during the day, but her attitude is amazing and smiles are the best!🥰🤩😁
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