I knew yesterday was going to be a marathon, I knew it wasn’t going to be easy, but I don’t know if I could have been prepared for just how exhausting it all was.
So, the good news. He’s got a great range of motion in his foot not normal for Arhtrogryposis club feet, and they are optimistic about getting it all corrected. His ultrasound showed that the right hip is definitely out and the left hip pops back in and out as he moves his leg. We met with Dr. Dias who had a great bedside manner and recommended we put Aleck in a splint to guide the left hip into place. If it works, then he would only need surgery, potentially, on his right hip. If it doesn’t work, it sounds like Dias would recommend we go ahead with the surgery on both hips. For me this was some relief. The idea that we wouldn’t do all we can to fix him worried me but now that the recommendation in on the table, I can fixate on other things.
He took his casting like a champ. To correct the foot they have to cast the entire leg. Dr. Swaroop anticipates 6 weeks of castings, so 6 different casts to move it into position and then one cast for another week to keep it where it needs to be. In the room where they do the casting the stuffed animals all have casts and splits, which we appreciated even if Aleck couldn’t, and they have this pain chart which is supposed to help the techs read the baby’s face to see what their pain scale was. We explained to the tech that Aleck’s face hits a 10 whenever you wipe his tush with luke warm water, so good luck with this. He was a real trooper. Once they started wrapping the plaster and it started to set he quieted down and seemed not to mind the cast. Then we asked the really important questions like, how long do we have to wait before we can sign it, and can we put stickers on it. The deep stuff.
After the ultrasound, the cast, and the meeting with Dias we headed into orthopedics to get him fitted for this hip split and for his hand splints. It was a grueling process, with breaks to breast feed, and they decided to just fit him with one hand splint since he’d been there for over 2 hours already and they didn’t want to put him, or me, through anymore torture. When we realized that we’d be there well past 11:30AM I told my mom to leave b/c I was lucky enough that my friend Julie Adler, was close by and had already sent me messages offering to come over. She proved to be the perfect replacement, keeping me calm, feeding me granola bars, and her phone’s ring tone of an instrumental version of “Blackbird” quieted Aleck down during one of his more fretful moment. I think I need to try that tonight. All in all we arrived at Children’s at 7:45AM, we finally left at 1:30PM, and headed over to Five Guys for burgers and fries. After all, I had been staring at their sign for over 2 hours so besides Aleck, it was all I could think about.
They told me he’d be in some discomfort with the first casting but that he’d get used to it. Now, I don’t know if the hip splint has made that discomfort worse, but here is what I do know. We no longer love our car seat, we no longer love our vibrating bouncy seat, and last night we woke up about every 30 minutes while lying in our bassinet. Normally he doesn’t like to lie down because of the acid reflux and sleeps his nights in his car seat, but last night it was the lesser of the evils. It seems that just as he starts to try and settle into a deep sleep is when he realizes just how uncomfortable he really is and begins to fuss. I brought the bassinet and my pillows into the living room and slept (hahaha) on the couch next to him. I woke everytime he started to fuss, and found that the sound of my voice very often soothed him back to sleep. This went on until 7am when he woke up for good and patiently awaited back-up, aka, my mom.
When they mentioned “splint” I thought of some splint I had on my finger in high school. It was mostly bendable padding with two thin metal strips to keep the shape. This was an entirely different animal. They heated this big piece of heavy plastic and then molded it onto his waist, behind, and between his legs. He had to lay face down on my legs with his hips hanging off the end so they could get the right angle. For this part he won a gold star, no crying, no fussing. But now, with the cast and the splint he weighs twice as much as he used to. And between the two there isn’t much in the way of clothing we can comfortably put on his body. He’s been in a larger sleep slack since last night, but we’re wondering if the constriction isn’t bothering him and my mom and I are about to experiment with big pants, and maybe a long sleeved onesie. Anything to get a few hours of sleep tonight. This morning I felt like I was in some crazy thriller movie where you walk into a house, the doors lock behind you, someone hands you a baby strapped to a bomb and tells you if you put it down for more than 30 minutes the bomb and the entire place will blow to pieces. Needless to say, my mom and I are now beyond exhausted.
Hoping that tonight’s a little better. Cross your fingers for us.