This is the latest post in the series of William, Grace, and Juliet's journey with hypophosphatasia.
At the end of January, the 3 little ones had back-to-back-to-back appointments. I packed up lunches:
Records, clothes and entertainment/bribes before bed.
We were so lucky that no weather had come through, but with frozen roads, we left at 5:30. The kids made the trip in their pjs, so that we could save some time. They did not go back to sleep the entire drive.
The first appointment was at 7:30 with the audiologist. This office is not at the main campus, so between the interstate exit forcing me to turn right and darkness, I was thankful for the time buffer to get there.
I helped the kids dress in the car, in the parking lot. They were wound up by the time we entered the mostly empty building.
They did well for the audiologist, in turns, but I felt like I had to fight the two that were not in the booth the entire time.
We had a short wait back in the waiting room for the ENT.
They were still wound up during the time I was going over their history with the nurse, that I had to break out my first entertainment at 8am! (never a good sign.)
The ENT thought the twins looked good, even though their tubes have come out. He was a bit concerned about William's T-tubes, so we will see him when we go up for their 6 month appointment with the Endocrinologist.
Everyone was hungry, even though it was only 10am, so we ate our bananas en route to the other hospital.
We had quite a bit of time before their ophthalmology appointment, but I'd gotten a call about some missing labs from our previous visit. So our next stop was the lab. Luckily it was just a urine sample, and not bloodwork! I didn't know how long it would take, so we went straight to the main campus.
A quick lab trip meant lots of time to kill before their next appointment, but we hadn't had any down time the last trip, so we spent as much time as they wanted in the video game zone.
We then ate lunch, played a bit more, and then took the long way across the bridge.
Even with all that wasted time and spent energy, we still had over an hour in the waiting room at the ophthalmologist. We finished the second half of Inside Out, then started the first (half?) of Lego Batman. We made a couple of trips to the restroom, hung out in the hall to eat our chocolate, and took turns at the water fountain.
When it was finally time, the nurse apologized. She said normally they have at least one cancellation a day and could bring us back early, but not this particular day. They were on time for the appointment, so I couldn't complain.
Each of the three had several tests to complete, and so once they hopped out of the chair, they got their next bribe. = )
They also got to take a trip to the toy dispenser. Then came the dilation. The nurse brought in two 'friends' so that they could put in the drops simultaneously. No one cared much for that.
We spent 30 minutes in a different waiting room, while the drops worked their magic. Then it was back to the room and each one took a turn in the chair with the ophthalmologist.
They all walked out of the door with glasses prescriptions. Even William, as the doctor was not content with his prescription.
She saw no pressure on the optical nerve, which is such wonderful news, but didn't help explain William's headaches. Since they are a 'team' of doctors (which is the whole point of driving up to Grand Rapids) she sent a message to the neurosurgeon to see if he had any openings.
From there we had to rush to their DEXA scan appointments. Grace went first, and we hung out in the best waiting area, the radiology clinic.
It is completely contained, has sections with toys for every age group, lots of books, a Movie, and big toys too.
William was the last one to go, and we were excited to leave! We headed out to the car, got everyone buckled in, and I checked my messages. I had one from the ophthalmology clinic. They'd managed to get William a 5pm appointment for that afternoon with the neurosurgeon!
Sadly, I don't get any reception in the parking garage, so we had to head inside to confirm the appointment, and hang out in their lobby for the next hour.
Finally it was time to go back, and see what the neurosurgeon could tell us.
He asked for some details, and gave us some good news: William will not ever have craniosynostosis again. But, that does not mean that his skull will grow properly, so surgery is still a possibility if problems arise.
He didn't see anything in his scans from his mishap in October, but wanted to do an quick MRI in a few weeks, and see what the scans looked like. That appointment is actually coming up next Monday, when all the kids are out of school.
Hopefully the new glasses will help with the headaches. He hasn't complained much lately, so there is a chance it was just allergies. While I'm not looking forward to the trip next week, negative results would be most welcomed.
Spending the extra 2 hours in Grand Rapids meant getting something for dinner on that end, but by the time we hit the McDonald's drive thru, all 3 of them were asleep. Since there was not a 'rush' to get home, I stopped by the Panera drive-thru for my dinner. = )
We didn't get home until after dark, but the kids were worn out enough from the day that bedtime was better than expected.
The next round of appointments for all 3 is in April. Hopefully I won't have to fret about the weather/road conditions by then.
