This is the latest post in the series of William, Grace and Juliet's journey with hypophosphatasia.
In July, Sarah called to let me know that she was willing to take a few days off if I wanted to go to the beach. Since we had a hospital day planned, and hour in the same direction, we decided to just piggy back it for the same day.
Avia decided that she wanted to come too, so last Thursday, William and the twins were slated to see the ophthalmologist, the twins had a visit with the nephrologist, with an ultrasound and William had to go in for a weight check for the endocrinologist.
We loaded up in a timely manner and hit the road just an hour before their appointment.
That's when the trouble began. My check engine light came on before we even hit the interstate. We devised a plan to go trade out cars with Billy, but saw him leave for work just before we could catch him (he wasn't answering his silenced phone...)
So, to be the most efficient, we dropped Sarah off at our house, so that she could trade my mom's car with Billy's and then follow behind us, in case we broke down en route. With so many appointments, calling the day off was a last resort.
The car performed well enough to get us there a mere 10 minutes late, which was not too bad all things considered.
It was chilly, but since we jumped out of the car and ran to the appointment, the twins were stuck sharing my jacket until they warmed up.
My mom took the big girls to a nearby auto shop to get a reading on my engine. Sarah joined us not too long after the first appointment (just in time for the ultrasounds!)
We had time for a leisurely lunch out on the rooftop patio. This was the first temperate day we'd been at this facility, to it was everyone's first time to play with the equipment!
Our biggest appointment of the day was with the ophthalmologist. She said that William and Juliet each had one eye that was not working as much as it needed to, so gave the order to 'patch' them for 2 hours a day.
This means that for 2 hours every day, they have to cover their good eye with an eye patch. William was terribly resistant to it. Juliet has been enjoying it I think, as she will wear hers without complaint for even longer. We return in 3 months to see if this is doing the trick. The next level is an eyedrop that causes the good eye to lose focus. = /
After a long day at the hospital*, equipped with the knowledge that my car just had a burned out coil causing it to misfire, we made a slower drive home, in two vehicles. It was sad to miss the beach, but taking the car another hour from home seemed ill advised.
Sarah met us at the auto shop with Billy's car, but since it only seats 7, she had to wait for Billy to get off work and pick her up.
***************
My mom and I took the kids to a local park in Lansing. It has a splash pad, and best of all a little beach. On a Thursday evening, it was uncrowded and the kids were able to enjoy their toes in the sand and paddle around in the water.
Maybe next time we will actually make it to Lake Michigan for our beach day. I'm calling it a win, since no one asked why we didn't go to the beach.
It was not how I expected my day to go, but I was very thankful for my mom and sister who picked up all the pieces that were dropping out of my day. It could have been so much worse.
later days
*all of their results are in, and everything is looking great!
<what happened previously
what happened next>
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