** Warning: This post is winded and probably only of interest to our family so either grab a coffee or close out now.
I've tried to sit down at this computer several times in the last 24hrs to recap on a few things but my head won't stop spinning, so therefor the words just aren't coming out right. To say I'm walking around in a numb state of mind may be an accurate statement. The reality of having two kids, both with needs, is beginning to sink in and the juggling act has already begun even though the littlest Teaster isn't even here yet. I'm doing my best to stay strong, stay focused, but I cave and admit, it's overwhelming right now.
Between my frequent and rather lengthy high risk appointments and fetal echos, and Oia's therapies and appointments, the emotional load is heavy and my calendar is full. I'm still learning new medical lingo each day, all pertaining to my kiddos, but all I want to be is mom. Plain and simple. Just a pregnant mom. Not nurse, not doctor, not PT, OT or ST. Just a plain ol' mom.
I took Oia to PT yesterday for her regular Tuesday session. We were planned to begin the taping method on Oia's upper leg in hopes of relieving some tightness. Her tightness has always been a priority of ours but it's been at the very top of the list now for the last 8 months or so. It seems she is sprouting like a weed which is what any mom hopes for but growth doesn't play nicely with a kid who has CP or spastic muscles. Oia can not straighten her right leg without the force of an adult to do so and as one can imagine, this stretching is very uncomfortable for Oia and actually it is quite difficult for the adult to manipulate. We have been in a holding pattern consisting of noninvasive techniques (including Botox, serial casting, new bracing, and now a knee immobilizer for night time use), all until our ortho doctor feels like Oia is old enough and ready for lengthening surgery.
With that said, we did not tape Oia's leg yesterday. Since Oia had an appointment with her ortho doctor following the PT session, we felt like it would be best to hold off on taping since the tape may alter her "normal" walking pattern and then doctor wouldn't be able to see Oia's current level of range/movement/mobility with tape.
We drilled our doctor with questions and future possibilities. Should we try Botox in her hamstrings this time since we didn't inject them with the last round of Botox? Both legs or just the right? Should we consider a gait study from the gait lab for a specific reading of Oia's leg issues? Thoughts on a knee immobilizer for night time? When can we begin discussing lengthening surgery?
He shot the Botox idea down fairly quickly, stating that in his experience, Botox doesn't take well in the hamstrings. I'm sure some people will beg to differ but we follow his word. He shot down the gait study fairly quickly too, stating that Oia is still small and that there would be a lot of "noise" on her data - whatever that means. And then there was talk of surgery...
Rob and I are ready for this. We have mentally prepared ourselves for this long ago. We are very practical people who want results, results that will be of great benefit to Oia. This dappling with Botox, casting, and anything else we've tried, is essentially a crapshoot. It may help, it may not. They are methods just toying with time, methods that Oia has to endure. But, yesterday doctor was on board with surgery and ready to talk more about it with us. In fact, he was so on board with the whole idea that he even tossed out the possibility of doing this as early as NEXT WEEK. I was little shocked since he previously mentioned that he typically likes to do lengthening on kids near the age of 5 or older. Oia is barely 4. He says she's ready. He even bravely stated that if we do this surgery, this could very likely be the only surgery she'd ever need.
Here is where it gets overwhelming. I now have two kids to consider. One who needs surgery now to better her quality of life and one who will "more than likely" need surgery once she is born. That's two kids, two surgeries, all in a span of less than 2 months. In addition, I'm uncomfortably pregnant and Oia will be immobile for a short time during the recovery process. Do you see the picture? How do we juggle this now?
Our initial thought was to schedule Oia for surgery after we knew what the cards held for the littlest Teaster, meaning after she was born. But, I've said all along that I want NOTHING to stand in the way of what Oia needs and when she needs it and waiting on the arrival of baby would be doing just that - prolonging what Oia needs. At the same time, we know nothing regarding baby's medical needs and in worse case scenario, with surgery and recovery of a newborn who has congenital heart defects, the process of a complete recovery can take months. That pushes us to winter before Oia gets the surgery she needs.
Long, long story short, here is the plan. Get Oia's surgery (and recovery) over with before baby arrives, pregnant and all, I have to make this work. So, June 2nd it is. I'm recruiting help (and digging within for super-human powers) to care for Oia during this time because I can't possibly do it all by myself while being 8 months pregnant. Little Miss will get the surgery she needs, be casted for a subsequent 3 weeks and then learn to walk with new, hopefully less restricted legs. And if all goes well after it's all said and done, come late July she'll walk her tiny, proud, little self into the hospital and up to whatever room her little sister is in to hug on her momma and meet "her baby" for the very first time.
I just pray we're making the right decision - for all of us. For now though, we're off to a neurology appointment... this ride never stops.