Another good clinic visit yesterday for Nicholas. His bone is almost healed! But almost is not enough to take off the fixator. Consolidation is really a waiting game and it seems to go on it’s own schedule and not mine. Although Dr. Standard had said 7 months and if we stay on course it will be one day less than that, so I suppose consolidation is working on Dr.S’s schedule. Right now we have a tentative removal date for 10/23. We will not really know for sure till 10/19 when he gets one last xray. Nicholas was hoping to keep his fixator parts when it comes off but I told him that that is not likely. He wanted to use it to build something and of course for general play.
I was really worried yesterday that Nicholas had another infection but Dr. Standard said I could wait and see a bit before starting the antibiotics. When he touched around the pin site there was no pain and no drainage and it was not as red as it looked last night at 9:30 when I started to worry about it. During pin care a tiny bit of goo was on one pin site and Nicholas and I thought it looked mostly yellow but a little green. I think we need better lighting for pin care. It is sometimes really hard to tell and we even use a flashlight.
Yesterday we waited longer than usual at the RIAO and I had all 3 kids with me so it was challenging. I brought lots of snacks and some play dough to keep them busy. I feel bad for whoever has to clean the RIAO because we left a trail of Oreo cookie crumbs all through the place. I did the best I could to clean it up. Christopher was a crazy cookie face mess, I had cookie ground into the bottom of my shoes, and Charlotte and Nick may have been on a sugar high all day. Really next time I will bring less sugary snacks. How can I wonder why they are bouncing off the walls with all that junk food. In Baltimore they get to eat all the stuff we really avoid at home.
Most patients, like us don’t mind the wait because you know when it is your turn that Dr.S will stay and answer all your questions and not rush you through. I had thought that Nicholas’ ankle was going to need to be fused because it seemed to me to have moved over and I thought he had said something about it but when I asked him about it he said that his ankle is doing fine. I think the front of Nicholas’ foot leans a little to side and that distorts the view. He is also really walking with his foot turned out because he is trying not to bump the fixator into his left leg. That poor leg is usually covered in bruises but he never complains.
I met a mom who also has 3 kids but it is her youngest who has a limb issue. His name happened to be Christopher too. We talked a bit about what it was like from our different perspectives regarding limb issues and birth order. We also discussed how each parent takes on certain tasks with a child in a fixator, based on your strengths. I am the leg wash/pin care person and appointment maker and taker usually and Steven is in charge of struts, doing exercises and of course takes care of Charlotte and Chris when Nick and I go to Baltimore. It all gets done one way or anther and working as a team makes it go smoothly.
The day ended with another lively kids with limb length differences web chat. I think it was the 4th or 5th one. It is hard to keep them straight since I help with organizing the perthes group chat. They (the perthes group) are a really lovely and lively group of women and were the masterminds behind our awesome t-shirts that said “RIAO Where great limbs and hips are STANDARD” (in case you missed my save a limb post). Some people come back to the chat each month with more questions, some come without questions and end up with one after reading other’s questions. And then there is me mostly without questions but hoping to answer parent related stuff and logistical stuff . The chats have gotten pretty humorous at times. Like when Dr.Standard was describing the difference between a typical fh foot and a club foot. He described a fh foot as sometimes being called reverse club foot (equinovalgus is the technical term but the reverse club foot thing was news to me) because the fh foot is usually pointing “down and out” and I had to giggle a bit thinking of Nick’s foot as ‘down and out’. Of course it no longer is! He also mentioned how the knee of a child with fh sometimes “pops and clicks”, which reminded me of how he once called Nicholas’ knee “loosey goosey”. So we laughed a bit about the lingo which can sound silly but is accurate. Maybe some new parents reading this are thinking “how can you laugh about such this stuff”. Maybe because at close to midnight after a long day I giggle at everything, maybe because the words really are stilly sounding and maybe it’s because laughter really is the best medicine (at least for the very tired and sometimes stressed mom of a famous fixator kid). How about all of the above.