Good heavens! Evie has been making HUGE strides in some different areas and every time I’m about to post about it, she does something new! A good problem to have!
About a week ago, Evie seemed to finally be getting back to where she was before the jaw distraction. She’s “talking” again by blowing raspberries which makes my heart so so happy. I was seriously devastated to not hear her talk for so long. I was scared we had lost it completely. Of course, just so you know how much of a two year old she is, I have to share that what motivated her to start talking again was joining in when her sister was being reprimanded. Two weekends ago, she actually followed me down the hallway to her sister’s room, stood up next to me (I was sitting on the bed talking rather sternly to Aleyna who has become extra sassy lately), and started blowing raspberries and pointing her finger. It was verrrry hard to keep a straight face while disciplining both of them! She has to be told rather frequently now that we do not in fact need her help in disciplining her sister. Of course, I usually have to cover my face or leave the room long enough to stop laughing first.
Then she started making HUGE strides with her sensory issues. Many medically complex kids have struggles with different textures or thing being on their hands, especially if they are tube fed as well. And unfortunately, we contributed to the problem, by working so hard to keep her ‘clean’ so nothing got in her trach. We’ve been pushing messy play and water play in therapy for a while now and Evie usually has a complete meltdown when we make her touch things she doesn’t like or gets stuff on her hands. Because she doesn’t want those textures on her hands, she is even more adamant that they not be in her mouth either, but one day when I was eating some hummus with chips (I’m completely addicted to garlic hummus right now), she came over and (through some sneakiness on my part) started putting her fingers in the dip and then in her mouth! It was such a HUGE HUGE step. Then later, I encouraged her to play with some ketchup which got all over her hands. She didn’t melt down at all! Then I asked if she wanted to wash her hands and suddenly we’re playing in a little bowl of water. The success just kept going from there and every day she was putting new foods on her hands and in her mouth! And she’s been playing with water so so well. And today (drumroll please) she took a BATH! A real bath! With her sister! I am just over the moon watching her start to interact with her world more and more. She’s still not actually swallowing the foods, but that’s okay. I think we’ll get there someday.
And finally, the big HUGE GIGANTIC news: Evie has been walking more and more! She’s taking 4-5 steps at a time, standing up on her own, and even catching herself when she starts to tip too far in one direction. It’s like, all of a sudden, she just decided she’d like to be upright more. I’m still working on getting video of it. Girl does NOT like to perform for the camera. It’s actually really odd to see her walking. We’re just so used to her crawling or using her walker that I can’t even really imagine life with her walking. We’re so excited, though. So excited.
I also had two big milestones this past weekend. On Saturday, after watching this video where the mom mentioned that their son gets very worked up if two people try to do a trach change on him, I did my first solo trach change (that wasn’t an emergency and Ty was close by in case it didn’t go well). It went pretty well and we may try changing trachs like that in the future. I also drove with Evie ALONE for the first time. We moved her car seat to the front passenger seat (yes, with the airbag turned off and yes, rear facing) so that I could see her and she and I had a nice little trip to the store. I would never do this for a long distance or on the freeway (since I need to be able to pull over quickly if she needs suctioning), but I feel much less trapped than before.
Evie has her next surgery in Cincinnati in just two weeks. They’ll take all the hardware out from the jaw distraction and also remove her tonsils. This should be a quick trip with just an overnight stay and, since they’re scoping her airway, we hopefully will have a plan for the next step.