Hard Work and Much Progress

Since FangFang arrived home, we’ve been working hard to get her in to see all of the doctors and specialists she needs to see, run all the tests we’ve needed to run, and connect her with all the services for which she qualifies. Make no mistake about it – this has been work. She’s been home just over 2 months, and so far we’ve tackled 3 assessments, seen 4 doctors who are going to be integral to her care, done our first adoption post-placement visit, started weekly physical therapy, and started the process to obtain a wheelchair. I’ve also had approximately 587 phone calls and occasionally some e-mails with various nurses, schedulers, and insurance company representatives. In the next couple weeks, we also have appointments with another 3 doctors and a dentist, plus an IEP meeting, and we’ll start physical therapy through the school system. Every once in a while we have a week with only one meeting or appointment (our regular physical therapy), and that feels so amazing and free, because most weeks register at least two appointments, sometimes more – this week has five. And it’s real work, coordinating all of those. There are a lot of balls to juggle in being a mama to a kiddo with special needs. Add to that the fact that it has been about 2 weeks since I’ve gotten both littles to nap at the same time on the same afternoon, and this mama is spending quite a bit of time emotionally and physically exhausted.

But you know who is working harder than I am? This girl.

For all of the time we’ve known her, she’s been quite adept at scooting herself around on her bottom, but she’d never independently shown us any ability to crawl. In fact, she acted like she’d never done any sort of “tummy time” before, but even so, it took her exactly one week of physical therapy and working on skills at home to start army crawling. The next week she was rolling over multiple times in a row and also pushing her stomach up off the floor to get into a crawling position. She’s also been telling me, “Stand up!” She loves being held in a vertical position, though I’m careful not to place any real weight on her legs.

Seeing her hit these milestones is amazing. She’s my fourth kiddo, and I’ve never celebrated a first army crawl with this level of excitement. She is clearly pushing herself – in fact, she’ll regularly look at our physical therapist or at me and say, “so hard, so hard.” But she’s also so excited to be able to master these skills that she sees others using. The joy on her face as she experiences the fruit of her labors is beautiful.

And now? FangFang is trying to pull to a stand. This is actually a rather dangerous situation, so we’ve strongly discouraged it for now. With her current bone density and the degree of bowing her right femur is showing, attempts to support her weight on her legs are highly likely to result in the snapping of that femur – an experience we’d all like to avoid. We’ve scheduled bilateral femur rodding surgery for the end of this month, and we’re hoping we can make it to that date without any issues. I cannot wait to see her progress after that surgery! I imagine it’s going to blow us away. Whether she walks or not is not important to us, per se – we love her because she’s our daughter, not because of her capabilities – but we want to facilitate her growth to whatever her full potential is in every area of her life, and it’s exciting to see her moving forward day after day. She’s an amazing kiddo with a huge sense of determination, and we’re fortunate to be traveling together with her on this adventure of life.

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