Ophthalmologist and Holland State Park

This is the latest post in the series of William, grace and Juliet's journey with hypophosphatasia.

Early in the summer, we had to make a 'dilation' trip to the ophthalmologist.  While not a fun trip, we made the most of it by going to a state park afterward.  It must have been on a Monday or Tuesday, because Alice didn't go, and must have stayed with Billy.

Everyone got a new prescription, no major changes, just tweaks.

They got rubber ducks from the phlebotomist!

The cloud cover was nice, and we knew a storm was due to roll in that evening.

We appreciated the cloud cover, but did not expect the storm to start thundering hours before it hit. Once the thunder started up, it was time to get out, but Avia treated everyone to ice cream!

On the way to the ice cream stand, they found some "summer snow*."  

Since we were forced away from the beach, we went in search of adventure.  We found a giant castle, full of private residences in Grandville.

After checking out the exterior (there was nothing fun to do yet, as they are just finishing up construction) we went to a nearby playground and walked a trail.

We outran the storm for a while, but it did eventually catch up to us.  We squeezed in one more adventure to the airport in Grand Rapids.  They have a park at the airport fields.  It has lots of seating, trashcans and even restrooms!

They braved the rain to watch the planes, but the lightning put a quick end to their adventure.

It was a pleasant day, considering it started at the doctor's office.  And we persevered, despite the rain.

later days.

 *Floating seeds, if you are unable to tell from the picture.

<what happened previously

what happened next>

Edited 7/18/2023: This post is now a part of my project: 78 State Parks! #61

Tahquamenon Falls #15
PJ Hoffmaster State Park #52
Grand Haven State Park #53
Waterloo Recreation Area #70a
Van Buren State Park #73

We spend so much time at the Doctor

This is the latest post in the series of William, grace and Juliet's journey with hypophosphatasia.

Last week, no, a few weeks ago, we went up to Grand Rapids for the day.  The kids were seeing the endocrinologist and ophthalmologist. 

William gained enough weight that his injection dose increased! He is now on a higher weight curve.  Yay, William! The twins haven't changed enough to merit an increase.  Everything looks good, but they still had to stop in for bloodwork.

They try to be brave, but no one enjoys giving blood. = (  The wait was not long though, and they always give out toys and snacks and stickers to ease the pain.

After a quick lunch, at a shared table (thank you sweet mom who let us sit with you in the packed cafeteria!) it was time for the Ophthalmologist.   

William's weak eye has improved with his patch wearing, Juliet wears hers more often and didn't have much improvement at all. = / So, both will continue the patching for now.*

They had to have their eyes dilated.  This is how the nurses opted to do it?

On the way home, we stopped into the glasses store to fill their new prescriptions.  They were all sad that we didn't leave with new glasses.

I'm anticipating a message this week to go collect their new ones.  It will be nice to have a 'back up' pair for each of them, should the new ones get lost.

later days

*William lost his case, with his $20 patch in it, and we have looked high and low to find it. So, this round he has a much cheaper patch (that came in a multipack.) I figured that we'd find his case once the new ones arrived, but no such luck. = /  So, if anyone finds that they need a child size patch for glasses, let me know, we've got bunches.

<what happened previously
what happened next>

Doctor Visits

This is the latest post in the series of William, grace and Juliet's journey with hypophosphatasia. 

The snow day messed with our flow for the week, since William and the twins had appointments on both Tuesday and Wednesday.

The Tuesday appointment was just the 6 month follow up with the Neurosurgeon, and it was in Lansing, so they only missed a half day.

Don't all children pose for pictures in doctor's offices?

*****************

The next day was a Grand Rapids trip.  We didn't have a packed day, so we saw off the big girls before heading up there.

Our first and worst stop was at the Phlebotomist office.  They had to have routine bloodwork and William was getting extra drawn for his genetic testing.

After lunch we had a bit of time to play.

Then it was back across the bridge to the ophthalmologist.

Juliet's patch wearing paid off, she improved greatly in her eye.  William not wearing his meant that he was prescribed drops.  We've only put them in once* and now he is an avid patch wearer.

We had to load up and unload once more at the ENT for William's 9 month check up.  It was quick, painless and we were back on the road in no time.

So thankful for these uneventful, stay the course, doctor visits.

later days

*So, the only day we've put them in I forgot to give his teacher a head up.  He fell on the playground, and bumped his head, but when he came into the office he had uneven pupils, so the secretary called me telling me that he likely had a concussion.  It was a scary drive, but my mom stepped up and took care of my groceries so that I could take care of him.  We were almost to the hospital ER before I connected that the drops that I put in his eyes dilate them for a longer time than the normal drops they give in the office.  Fun times.

<what happened previously
what happened next>

The final new patient appointments, and 3 month and 6 month follow ups

 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*!!!

**************************************

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>

Another All Day Hospital Trip

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.

<what happened previously
what happened next>