So here we are with summer drawing to a close. I must say our summer has been amazing, jam packed with memories, exploring and connecting as a new family of three. Fishing (catch and release) became one of Milo's new favorite things. I love how much he loves it and sister loves cheering him on and being a part. If you've never had a child who's had a traumatic brain injury it's hard to explain exactly what it's like. While the brain is healing your child is hyper-sensitive to EVERYTHING. Your child can get over stimulated quickly. How you calm them is totally different then a child who hasn't had an injury.
When we first brought Ellis home from the hospital it was a challenge. Simple touch was over stimulating to her. She would wail when we touched her or changed her diaper. Bath times were horrendous. I'm thankful she has grown so much in this area! She no longer is sensitive to touch.
Noises were another story. At first the smallest noise would send her through the roof. I'm talking as small as shutting a refrigerator door would bring on a fit of wails and sobs. We walked around on egg shells with her for a long while, not so easy to do when you have a loud toddler running around. It's incredible to see how far she's come in this area. We can even take her out to eat with loud talking, dishes clanking and all kinds of noises and she will typically sleep through it all. I think I jump more at some of the loud noises than she does.
What has improved, but continues to be a work in progress, is her self-sooth skills. Ellis had a temper even before she got sick but she has an even bigger one now. Once she gets upset and all riled up, it takes work to get her calmed down. Typically wrapping her up in a secure blanket or taking her into a dark quiet room does the trick. We've learned what works and what doesn't but most of all it takes patience. Some days a crazy amount of it.
All that said, she really has come so far in all of these areas. This summer she was officially weaned from all her seizure medications and has been completely seizure free! This development has been such a blessing. Since she's been off of the medications, that have side affects a mile long, we have seen even more growth in her and some of her skill abilities.
The hard thing about the end of summer for us is that fall is right around the corner and so is cold and flu season. Just last week Milo was around some kids and came home sick. I'm still really cautious around Ellis with germs so most of the late fall and winter will be spent home bound, as much as we can unfortunately. There will be a time in the future where I'm not as concerned about sickness and germs, but for now as little as she is, I would rather be safe about it. We will operate out of an abundance of caution with her just as we did last winter.
Oddly I am kind of used to this life routine. When my husband Joel was going through chemo the smallest thing would ravage his already weak immune system. During cold and flu season we mostly stayed in our own bubble. It was hard at first but something that just became the norm during his two years of treatments. I learned a lot from that experience which I draw on in this journey with Ellis.
Knowing that's the case we have been soaking up every bit of time in the real world we can, before our world gets a bit smaller. I'm so proud of Ellis and all the growth I've seen in her this summer. I can't even imagine where she will be by next summer. It's exciting to think about.
This baby girl has come so far, moved many mountains, and has many more to move.
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