This is the latest post in the series of William, Grace, and Juliet's journey with hypophosphatasia.
On Monday, the kids went to meet the plastic surgeon. He collaborates closely with the neurosurgeon. So, when we met the neurosurgeon (back in October) he wanted us to meet with the plastic surgeon. Luckily, the plastic surgeon travels to Lansing once a month, and so we were able to get in for his February trip. A few weeks before the appointment, they called to reschedule it to March, then a few weeks before that they moved it to April, a few weeks before the April appointment, they moved it to a different day of the same week. Somehow, finally, we were able to meet with him.
Despite the office being earmarked for pediatric patients, they did not have any toys or play area set up, so I took my freshly rested, energetic children into the hallway to play.
He said he thinks they look good, and has them on a yearly follow up (the best kind.)
And, my counter is paperwork free for the first time since we moved in*!!!
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On Tuesday, we had an all day trip up to Grand Rapids. The first appointment wasn't until 9:50, but Avia came over to take the big girls to school so that we could get on the road a few minutes earlier.
William was meeting with a neurologist, since he'd had headaches this winter. I was very concerned when I made the appointment, not as concerned when the appointment actually arrived, since he hasn't had any headaches to speak of lately. The neurosurgeon had also scheduled an appointment for that day, but was out in surgery (or sick, maybe) so we met with one of his associates. It was a non-event, which is the best way to be. We'll meet back with them in 6 months, just in case.
Our next appointment wasn't until 1:30, so we went to play with the interactive projectors, then had a leisurely sack lunch. We still had plenty of time after lunch, so they played some more.
We headed over to the ophthalmologist's office, but were still an hour early. We had gotten called back into the neurologists office just as the action began in the Incredibles movie, so when the lion king ended, I requested it for William.
We had just gotten to the same scene when we were called back to the ophthalmologist (of course.) The night before, I tried to locate everyone's glasses, but could not find Juliet's. I didn't realize that we were meeting with the ophthalmologist, or I would have done a more thorough search. They were able to fashion a 'mock glasses' for Grace and Juliet (we were able to find William's.)
Apparently they are all at risk for a condition called amblyopia, and need to be wearing their glasses all day every day, but Juliet is the most at risk. Naturally I'm given this information when her glasses are misplaced. We will return to their office in 3 months, to see if consistent glasses wearing helps their weaker eyes.
The final appointment was the 6 month with the endocrinologist. We were also early for that appointment, and all of us were tired of being there. They were each given a toy at the ophthalmologist's clinic, the twins picked sticky hands, and William a bouncy ball. The bouncy ball was promptly confiscated, and the sticky hands had lost their stick, and desirability by the time we were called back.
The endocrinologist is pleased with their treatment still, and we will discuss options** if their weight has not improved by the next visit, since it has only gone up marginally since our previous visit. = ( She did increase William's dosage by .05mL and that will start with the next shipment.
Despite being scheduled for an hour an a half, we were able to leave almost an hour earlier than planned.
We headed to McDonald's for dinner, but by the time we arrived, everyone else was asleep. The drive back was uneventful, and we actually beat Avia and the big girls home from their movie. = )
So, I'm hoping that my children will eat more, and that by wearing their glasses, their eyes will improve.
later days
*the area that I keep all the 'works in progress'
**the easiest fix is to have them all drinking pediasure again. The drawback to pediasure is that they tend to give up eating all other foods if they have the option of the sweet drink. Also, having it right before bed has been extra hazardous to their, already fragile, teeth.
<what happened previously
what happened next>









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