We had another marathon day over at Children’s outpatient facilities yesterday, their Clark street location. Thank goodness there are a ton of great places to eat over there. Just thinking about eating corned beef at Frances’ got me through the first half of the day, and then eating one of their amazing Rubens got me through the rest, though barely. Having to breastfeed in public kind of sucks, having to do it 5 times in one day is exhausting. I probably did it too much but I felt if he needed it, it was all his, after all he was having to go through during the day it was the least I could do.
The morning began with a new round of casting. His first cast was removed and the doctor remarked on how great his foot looked already. You could see the difference. They checked his range of motion on his knees, feet and hips and said all sorts of impressive things about his movement and range of motion. In between casts we had the technician weigh Aleck to make sure he’s gaining weight, and our little man was up by 4 oz in one week. Woo hoo!! He peed on the tech and all over the scale when they weighed him and we enjoyed replaying that scene for the rest of the day.
After the new cast was set we headed back to ultrasound to see how his placement is while he’s in his splint. Unfortunately, because of the position of the splint that proved impossible, so they ended up just doing an ultrasound of his hips out of the cast. Not sure what the outcome of that is since it wasn’t what the doctors had wanted, so we’ll just have to wait out with this hip splint on and have the orthos check it every week. I can’t believe we made it through the first week with that on already. Only 5 more weeks of the splint, and 5 or 6 weeks of casting. Right now it feels like a lot but its going to be over so quickly and its amazing how we all acclimated. Aleck is literally twice his normal weight and he kind of reminds me of the bionic man. Maybe when this is over he’ll have some kind of crazy super left hip that allows him to be an amazing breakdancer who saves the world in his spare time.
The ultrasound was followed by another visit to orthotics. They did some adjusting to the hip splint and fitted him with a splint for his right hand. Now he has splints for both hands. We put them on him today and he was upset at first and then he fell asleep with them on for 2 hours! Our general instructions were that we were supposed to build up in increments, but they also said if he fell asleep with them on, leave them on until he got upset. I don’t think I put the left one on perfectly, I got a little squeamish when Heidi was helping me fasten them. The idea that I was actively doing something to make him scream out in pain, even if it was only temporary was really difficult. Not sure who’s going to need more practice with the splints, him or me.
We finished round one at noon and headed for lunch. Round two was a 3pm neurology appointment so we took a very leisurely lunch and then I ran a few errands before the appointment. I think the neurology appointment went well, but it was kind of hard to tell. Basically the doctor explained what her role could be in Aleck’s care, and that she’ll be brought in to test his neurons, muscles and reflexes if we notice something is wrong or if we want some answers that no one else can give us. It seemed like she didn’t think anything was obviously wrong with Aleck at this moment, but he’s a baby and Arthrogryposis can manifest itself in many ways, so for now we are just supposed to make sure he’s doing the things he should be doing; eating, breathing, pooping, crying, moving. So far so good.
What’s funny is what I didn’t think about when planning this day. The hospital had scheduled our neurology appointment and in all honesty, I should have changed it to another day. My instinct was to think that while we were there we should just get as much done as possible, and I knew I’d be tired, but I didn’t even consider how tired Aleck would be. He’s been totally out of sorts today, having trouble staying awake during feeds, his eyes looked red and puffy, poor little guy. I don’t think I can put him through that kind of a day again. It’s like I didn’t realize that he’s just this little baby who only has so much energy, I was so focused on the task again. Lesson learned. I need to take care of my baby in all aspects, not just his medical itinerary.
And to top it all off, it was our 8th wedding anniversary yesterday. A very romantic evening we enjoyed together. Craig got me red roses, we exchanged cards, then I crawled into bed at 7:45 while Craig ate leftover cold pizza. Aaaaah…isn’t it romantic 😉
Happy Anniversary baby, celebrating our day with our little boy makes amazing progress is just perfect if you ask me.