If I sound like a broken record with “doctors said this, doctors said that,” then good. I believe it’s important to stress that while doctors have been extremely beneficial to Namine (indeed, she wouldn’t be alive today without them), it’s also important to note that they don’t know everything.
When I said that doctors said she wouldn’t grow, that wasn’t hyperbole. There was a good chance, we were told, that her legs and feet would simply cease to grow. Well, I’m happy to say that’s not the case.
With growth comes strength, as well. As we entered this year, Namine was still having trouble getting herself into her wheelchair. She was able to get herself into other chairs, like her recliner and her chair at the dining room table, but for some reason her wheelchair still confounded her.
As it turned out, it was at least partially due to the shape of the wheelchair itself and the lack of good handholds. But as Namine’s arm and leg strength improved through using her walker — which, according to Wolff’s Law, improved her leg growth as well — her ability to hoist herself into her wheelchair improved as well.
Namine also started first grade this year. When we started her in kindergarten with the RVA — essentially homeschooling but backed by state funding — we were unsure of how things would go.
Suffice it to say, things went well. Namine is still a little behind in school at the moment because she’s been sick, but we’ve no reason to think she won’t get caught up. She enjoys learning of all sorts, especially reading, and that extends to school as well.
Speaking of reading, Namine has soared past reading her Level One Reader books, though she still reads some of them from time to time, simply because she enjoys them. And why shouldn’t she? Jessica and I also enjoy rereading books we’ve already read; I see no reason why Namine should not either, as long as she enjoys it.
My grandparents have given Namine a stack of books that used to be mine. And I’m not kidding, the pile is nearly as tall as she is sitting down. She’s been working her way through them, plowing through two or three a day.
Namine and I have been reading to each other in the evening, as well. Sometimes I read to her from a chapter book — we’ve gone through several Junie B. Jones books (which Namine calls Junabee Bajones), The Wizard of Oz, and more that I can’t recall right now. We’re currently a little more than halfway through Half Magic.
One of the highlights of our year, in my opinion, was participating in Briggs & Al’s Run & Walk. Jessica and I started our own team, Team Namine, to raise money for the Children’s Hospital of Wisconsin Special Needs team, because they have done so, so much for us.
Namine had been talking about taking violin lessons for some time, but we settled for giving her piano lessons for the time being. (It helped that my mom teaches piano.)
Namine sometimes puts off practicing, but she took to playing piano. She’s got a good sense of rhythm, and she played a couple duets with her grandma in her first piano recital. (It wasn’t her first ever recital; that honor fell to when she was in ballet.)
As Namine has gotten older, she has needed fewer and fewer surgeries and other procedures. (I can still hardly believe that it’s been over a year since her third and final heart repair!) But she did still need something this year — a partial frenectomy.
Namine was born tongue-tied, which means the webbing under her tongue (called the frenulum) extends to the tip and prevents movement. Her speech has improved consistently thanks to therapy, but unfortunately had reached the point where it could not improve much more without surgical intervention.
Clipping the frenulum, called a frenectomy, could lead to a blockage of Namine’s airway. She hasn’t needed a trach since she was decannulated at two and a half years old, and we didn’t want to do anything that would require one again.
So instead of doing a complete frenectomy, as the hospital’s speech pathologist suggested, Namine’s doctor suggested doing a partial, just clipping a fraction of it to loosen her tongue by the smallest degree.
She ended up clipping a centimeter, but even that was enough to allow Namine’s enunciation to improve.
In November, we went on vacation to Florida with my aunt. There were so many highlights of that trip, but I think the most moving for Namine was seeing Winter the dolphin. You may have seen the movie Dolphin Tale, the movie about a dolphin who lost her tail. We got to visit the aquarium where the real-life Winter lives, and Namine just fell in love. We also got to go swimming and visit a chocolatier and an amusement park and the Kennedy Space Center.
As we neared Christmas, we joined Jessica’s siblings to make over 12 dozen cookies to distribute amongst ourselves. Namine and her cousin Olivia got to help too, by decorating the sugar cookies once they were baked. They did better than last year at not just trying to eat the decorations.
With as busy as we have been — doctor and clinic visits abound, as usual — we consider ourselves extremely fortunate. Namine has only had one surgery this year, the frenectomy, and I cannot articulate how incredible it is that she’s come so far.
So here’s to a brand new year, an ever stronger love, and our amazing daughter.
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