March 4th, Ear Tube Check

This is the latest post in the series of William, grace and Juliet's journey with hypophosphatasia. And now adding Emily to the list.

The high today was 46F, but it was cold and windy and even had some snow in the morning!

I had a reminder pop up in my phone last week, that I needed to take William to his PCP to see if his ear tubes had moved at all. The ENT gave him and extra six months, but sent me with the name and number of the surgery scheduler to remove the tubes if needed.

So, we started the day by dropping off Alice, Emily and Juliet, while I took William and Grace to the doctor. We were so lucky that the doctor had a 9am opening (we got there at 8:55) right before William's 9:30 appointment!

Grace complained of headache, tummy ache and sore throat, and since she finished off her medicine Sunday, there was a new chance of strep. = ( Thankfully she tested negative, but the culture was going out tonight just in case.

William's tubes are still in place. I tried calling the scheduler three different times over the course of the day, and ended up at her voicemail each time. So, I still don't have a time or date. = (

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

After dropping them back at school, I had a bit of down time before heading back to help with round two of the talent show auditions! When I came home from that I made up the sign announcing the participants, then went back up to get them approved for posting. Hopefully they will be up tomorrow. = )

When I left there I headed to the car wash to wait in the longest line I've ever waited in for a wash! There were probably 10 cars in front of me. The line moved fast though. From there it was a quick trip to the thrift store to drop off a couple of boxes, then do a little shopping ; )

I picked up my crew at normal time since it was a long Wednesday, and Willow came over for a while too.

For dinner we had spaghetti and meatballs.

It was a busy day, so I'm ready for our two half days the rest of the week!

later days

<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.  And now adding Emily to the list.

I've gotten the best update on the hpp front, Alice does indeed have Emily's (and my) strand of hypophosphatasia, but the endocrinologist does not believe that either of them are suffering from symptoms.  So, the medication is not indicated for either of them! 

This does leave the question of what is causing Emily's crashing.  We will explore that with the doctor at her appointment in November.  Also, she has sent down lab orders, so that if Emily does crash at school, we can go straight to the lab and have her tested.

So, I'm removing Emily from the hpp list above, but I'll try to post on what we find, when we find it.

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

At the tail end of summer I made appointments for Alice and Emily to see the optometrist for their yearly visit.  Emily's eyes are still perfect, they don't need to see her for another year.  Alice's eyes changed a little, so she picked out some new frames.  I did have him check for pressure on the optical nerve and calcium build up, but they were both in the clear.

He did diagnose Alice with something called divergence excess.  From what I understand, the muscles in one of her eyes are not working as hard as the other eye.  So, she has to undergo therapy for 12 weeks.  We weren't able to go in weekly, since their only appointments for therapy are on Tuesday, so Alice was given 'homework' to do three times a week between appointments.  This was her first therapy session:

Sadly, this appointment was during the second week of school, the day right after her (and Emily's) 6 month dental cleaning appointment.  So, we've logged half a dozen doctor appointments so far, and it's still the first month of school.

**********

Labor day weekend is a four day event for my children, so on Friday, my mom came with us to find some garage sales!  Since we were out, we swung by to pick up William's new frames (the old ones met their demise on the playground a few weeks ago.)  We ended up back in their office at the end of the day for a quick adjustment, before the holiday weekend.

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

Grace failed her hearing screening at her yearly pediatrician appointment.  I'm still amazed that they had the audacity to fail her with all of the issues their machine was encountering.  Luckily for me, William is on a 9 month visit with an ENT, to keep an eye on his ear tubes, so I just added her to that appointment.

William didn't need to be tested, he just wanted to try too.

She passed with flying colors, and does not need to be followed.  William on the other hand still has  his tubes that were put in in Dallas, and they are showing no signs of coming out.  In March, if they are still in place, he will have to have them surgically removed. = (  That's over six months away, so I'm hopeful that we can avoid another surgery.

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

On Friday that same week (which means two Grand Rapids trips in one week. ew) Grace had her sleep study.  So, after a rushed dinner, Grace and I packed up and headed to the hospital.  It's a very desolate place compared to the daytime hours!

It will be a sad day for me when we walk across this bridge and no one wants to climb along the railing.

Once we were all checked in, Grace got ready for bed and picked Moana to watch while she was being connected to the machine.

It wasn't all bad, she was given a variety of snacks to munch on while the tech worked.

Ready to go!

We finished up the movie, and somehow she was out like a light.  The tech only had to fuss at her once over the speaker to keep her cannula in, and only came in once to adjust something.  It was a good night for her.

At about 6am they gave us a wake up call and we had to get ready to go.  We rinsed out the wax/gel stuff as best we could in the shower. Then  we explored parts of the hospital that we'd never been to in search of breakfast!  We were given $12 in gift certificates, so we both ate well.  Grace was in much better form than I was at that time of day. = )

I just received the call yesterday, that her results came back normal!  So, we will still meet with the pulmonologist in December, but probably not again until there is another concern. = )

We have no appointments scheduled for this week, which I had to double check, because I was in disbelief!  I think we are slow for a while, but it never stays slow for long.

later days

<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>

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>