We had PT in MD today at 11 am. It was strangely empty in the hall way when we arrived. We were used to wheel chairs and strollers and people lining the halls. There was no one today. It was our first session there in three weeks. They explained we are at the end of the season, school has started and everyone finished their procedures and are continuing care at home. I was actually disappointed not to see the crew we had gotten to know and see how they were progressing. Eden charmed our therapist Erin. Erin thought she was adorable and funny and most importantly, she was doing great. It was just me and Chris with Eden, the monsters decided to stay home with Sabba and Savta which was a good thing since our 1:30 appt with the Dr actually happened at 5:45!!
Eden was a trooper but it is amazing that doing nothing like sitting in a waiting room can be so exhausting! We did see a few people we knew while waiting, so it was nice to catch up and have friendly faces waiting with us. So here is the update. He originally said we were at 3.2 centimeters which was a bit disappointing, we thought we would be at 4 cm, more then half way to the goal of 7 cm. I could see in Chris' face he felt the same way. Right when we were about to ask, the Dr looked at a different x-ray and said wait, this is clearer, I think we have more, let me go measure. So Dr Standard went off, did his funky calculations and came back with 3.7 cm, so we are almost at 4 cm!! YEAH. Eden's mobility is fantastic and he said she is a best case scenario and wants all his colleagues that question whether a 3 yr old can tolerate this procedure to see her. I said she may tolerate it, but it sucks for the mom. He and the two assistants with him laughed, I wasn't kidding.
We asked about the pain meds that she is popping every 4 hours. They said not to worry, three year olds do not become addicted. But he said he is not surprised to hear there is more pain as we are pretty far along into the process. He told us to up the dosage to try and give her more comfort for longer periods. OK! Maybe she will sleep at night now...
And our next big question... what can we expect next? We will most likely keep turning through most of Sept. Then we will stop turning but the fixator will remain on through most of December while the bone hardens. Once that happens, they will surgically remove the fixator and implant a metal rod to help stabilize the bone. That is a one night hospital stay so they can dose her with antibiotics to ward off any possible infection. She will be in a cast for 4 weeks, full leg but she will be able to walk on it. So that takes us through Jan, right around Eden's 4th bday. I saw the disappointment creep into Chris' face again, he was looking forward to being done with this by New Years. It does not look like that will happen, but we started this thing and we will see it through to the end.
So, to sum it up, it was a long but good visit. Great to hear we are on track, but sobering thinking about the long road ahead. We go back in three weeks. If we stay on track by that time we should be at 5.8 cm, give or take. So close.... Again, one day at a time.
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