Wednesday the girls and I drove to Indy for Bailynn’s post op appointment at St. Vincent’s and for Lila to get her new mouth spacer put in at Riley. Bai was not happy with the car ride, either direction (I will share more about that below). She was however elated to get to leave the hospital with no procedures! She blew raspberries and squealed with delight as we left.
While there, we got fresh x-rays of her back and her hip. Her back looks exactly the same as it did with the rods in it! Huge win for us! That doesn’t mean that her muscles won’t cause issues and future curvature, but for now we are straight. Now we get her healed up enough and start working on muscle strength. Summer can’t get her soon enough, the pool is by far the most tolerable workout for her. Her hip is still displaced, but it has not budged one way or the other. Talk of more muscle and tendon release procedures was addressed, but really what is that going to do?! We have tried these things on multiple occasions. We have done botox, in an attempt to loosen her tightness. We have done serial casting in an attempt to get her hold her legs, feet, and hand in different positions. It has all fell flat, and made her incredibly mad in the process!
Still waiting on the brace for her back and her hand, I’m sure we will hear soon.
I addressed my frustration with the bad (in my opinion) stitch job of the dural tear procedure (images embedded below). The surgeon who preformed this just doesn’t stitch as pretty as her surgeon. I realize she has had numerous surgeries on her back. I realize her back is riddled with scars, but is it necessary to not try and make it look decent?! Scars are the worst. It breaks my heart, but in this instance again, there is nothing that can be done.
We don’t have to go back to her orthopedic surgeon for 6 months (as long as Bailynn agrees to that!).
Next, we have an appointment to go and see the Tuberous Sclerosis specialists in Cincinnati at the end of April. We will get a CT scan of her kidneys (please pray like crazy! I am terrified of this scan). We will see the neurologist and nephrologist there and talk about finally getting to re-start the Rapamune for her TS and tumor growth. Just a few short weeks till this next adventure.
She is having better days. We still have days were she screams and throws up all day. She still isn’t pleased with too much movement. She is tender. She is strong. We at least don’t have the worry of metal protruding from her back anymore.
Our trip to Indy:
Most of you that live around here know how windy it has been the last few days. Wednesday, on our journey home, I drove through some of the worst weather conditions I have ever drove through in my whole life. The wind was so strong it lifted furniture, huge bookcases, out of a vehicle a few up from us and threw it upon the highway. Cars scattered and dodged, the dumb truck kept driving! It was a real life game of frogger and somehow we all came out unscathed. The wind kept us at a constant state of correction and alteration. Cars struggled to stay in their lanes and on the road. Some pulled over, most trudged on. The most disturbing scene was a Semi lifted by the wind and thrown off the highway into trees! The driver was ok, we saw him open his cab door to climb out, but still, what a sight! These driving conditions followed us all the way to Princeton. Then we heard a huge storm was heading our way, skies clear, wind dying, I thought there was no way. It did rain, but from our earlier driving conditions, the weather was finally safe to drive through. We made it home. I happily shuffled my children into our sanctuary and thanked God that we had got there safely, cause there were moments of great fear as we zoomed towards our destination. A very eventful adventure indeed. All for great medical care.
If you would like to see the progression of Bai’s back since surgery. I am linking a pdf here. Click if you wish, as always, the images are not for everyone. Bai’s back post surgery 2016