January 30th

Today the expected high is 32F.  I'm so tired of being cold. = (

At least we aren't expecting any snow, which is good, because tomorrow is our double trip up to Grand Rapids for Emily & William.

Grace woke up with a complaint of a headache and sore throat for the 3rd day in a row.  I was not able to swing a morning appointment for her, so my mom is taking her in this afternoon while Emily and I try to catch a nap.

I didn't sleep well, because my body has already started to prepare for Emily & I's weird sleep schedule tonight.  = /  I've started making a list of things for us to do (fun and not as fun) like sorting out the 'useless' Legos,  pruning Grace & Juliet's closet, painting our toenails and making a donut run. = )  Tonight is going to make sticking to my 21-day no candy fast a little tricky, but I think I can push through.

I picked Emily up at noon, which is the tail end of her lunch.  She was excited = )  I was worried that we wouldn't nap, but I snuck in an hour and she got in 2!

My mom messaged me with a report of Grace having strep throat.  = (  She also took her by to pick up her new frames.  She seems much happier now that her glasses aren't sliding off of her face.  Their last stop was the pharmacy to pick up her medicine for the next 10 days.

I picked up the other three before Grace and avia returned.  Everyone worked on homework, then Grace went into the room and fell asleep.  Poor sick little baby.

For dinner we had egg fried rice.  And Billy scheduled our summer trip to Great Wolf Lodge!  It will be our first time, and we are all excited.  Even Alice who was hesitant at first. ; )

later days

January 27th

Today was another cold, grey day.  The anticipated high was 35F, but my car read 36F at one point. ; )  We didn't' have much wind or any precipitation which made it bearable.

My mom came with me to make my grocery circuit: recycling @ sarah's, gas, aldi, Meijer.

Paczki is back in stores, I am soooooo excited!  Today I picked a cheese filling.  My favorite is lemon, I'll probably get it next time.  Or maybe Bavarian cream.

I was on a bit of a time crunch today, so I dropped her off, and headed to get Grace's glasses taped, again.  It took a while, because she actually completely replaced the earpieces.  Her glasses should be coming in any day now.

For lunch I had half a Paczki, half an avocado and a slice of swiss cheese. = )

Today it was my turn for the dentist.  It was just a cleaning, but it was at 12:30, so that I could finish my shopping, but not be anywhere near the end of the school day, in case things took longer than anticipated.

When  I went to pick up my dear ones from school, I saw two of the 4th graders chatting.  I thought to  myself, wow, they are so tall, I guess they are practically 5th graders... Then I recognized Alice (she had only the hood of her coat on, so I didn't recognize her sooner.) oh boy.

For dinner we finished the leftovers (the Chinese food  just lasts for forever!) and William got to enjoy one more BBQ sandwich.

Emily, Juliet and I all made our lunches for tomorrow. I'll need one, since I'm subbing an all day job tomorrow.

later days

Alice's Final in Office Eye Therapy

We knocked out Alice's 3rd, and final, eye therapy appointment!  She seemed to show improvement.

We came home with 3x a week homework for the last time. WooHOO!  It has been a tough 12 weeks.  She only has one more day of work at home before her 'check up' this Wednesday.

The doctor told us that she will have homework still, but it will be far less intense.  20 or so minutes a week, versus the 90 she's booking now.

I am hopeful that the hard work Alice has put in will pay off.

later days

A blurb about her last appointment can be found here.

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.

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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.

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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.

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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.

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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

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Glasses Pick-up & New Dentists

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

We were finally able to pick up William, Grace and Juliet's new glasses!  Grace thought it would be awesome to mess with everyone, and picked glasses that are super similar to Juliet's old pair.  Poor Juliet even tried to grab that pair one morning! = )

So, people who knew them by their glasses have been calling Grace "Juliet" more than usual.  = )

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We also had their first appointment with the dental clinic down in ann arbor.  The drive is about the same as that of Grand Rapids, but the parking situation is not as accommodating (though there was no issue this first visit.)

My mom came since the big girls were out of school, and it was just too cold of a day for them to do any sort of exploration.  I was glad to have her there, since it took them almost 30 minutes just to get us registered.  They promised that next time would be shorter.  Time will tell.

This was in the lobby, I wasn't allowed to take pictures in the back.  All three got very good reports.  I feel so comfortable taking them to this clinic. They have so much experience with hypophosphatasia, collectively, that they have actually diagnosed their patients with HPP before!  

William's report was the best.  He has no outstanding cavities, and the plan is still to cap his adult teeth as they come in.

Grace and Juliet are also cavity free, but will nee to have some caps put on their back top molars to prevent further loss.  Their teeth are in very good condition considering their lack of enamel. 

They did not take x-rays (since it has not yet been a year,) but they think that their adult teeth may have been spared thanks to their medication!!!!!!!!  

Once we get the twins teeth capped, two visits in as many weeks in June, they will only have to come in every 6 months for regular visits. = )

All in all, a heartening trip.

later days

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Regular Appointments

Our life has more doctor visits than most, but far fewer than we used to.  So, documenting non-hpp appointments usually falls by the wayside, but not this month! = )

All 5 of them had a cleaning at the dentist, back-to-back.  It was at 8:30, which was not ideal for a summer appointment, but it was nice to knock it all out at once. = )

And, I took Alice and Emily into the optometrist to update Alice's prescription and check on Emily's eyes.

Alice's prescription changed a bit, so she got a new pair that we picked up last week.

Emily's eyes look good for now.  She won't need corrective lenses for a while. = )

They dilated their eyes, so the big girls got to do a few errands with me in their cool shades. lol

all things considered, we had a pretty healthy summer.

later days

The First Spring Break, and other things

The final full week of February, the kids had their first Spring Break (they'll get another week at the beginning of April.)  We had a few appointments, but just enjoyed a low key week.

This looks like it was at the big kids' school, but I don't remember taking this picture.

We picked up the twins' glasses:

We went to a MOPS playdate, and while we waited in the car, the twins like to have the window cracked (it is locked to my controls) and play in the cold, while staying warm.

Pancakes are a favorite for all of us.  Easy to make, fun to eat!

We keep one of the bathrooms heated, with a space heater, warmer than the rest of the house, so many days we end up playing in the sitting area of the bathroom.

With Emily's birthday coming to a close, it struck me that the twins' birthday is up next.  They will be 4!!! Sometimes when they sleep, I can soak in their baby features, but they are growing up fast.

Juliet close up.

Grace riding a pony, or turtle? I can't remember now.

William and I had some fun during reading time. Dino Selfie:

The best part of the thrift shop is the toy section, at least according to grace and Juliet! I bumped their "allowance" down from $1 to $.50/ea because they were too good at finding so much stuff to bring into the house.  They still manage to find things, hopefully now it will be a slower rate!

I don't know what Juliet's goal was, but one day last week she dressed in hello kitty all day.  The shirt when they got dressed and nightgown when it was bedtime.  Grace never fussed, so I doubt it was to annoy her, but it made telling them apart a bit more challenging.

I don't let the kids in the front with me when we wait, because they push buttons and change my settings. = ) But, this spot is the favorite for the big kids, so when we go to pick up, the twins clamor and vie over this spot.

Emily had some leg pains on Thursday, so we went to the doctor.  We are just keeping an eye on it, and Emily hasn't complained again, so I guess it's healing.  While we were there, I did request her annual ALP test, so that we can get a jump on HPP should it manifest in Emily. Here we are at the lab, that snowy day.

William's class celebrated Dr. Suess' birthday on Friday.

Emily was playing a balancing game, which is a new favorite around here.

William wanted to show off his angry bird icon.

When we dropped Emily back off at school, it was almost time for William's lunch.  So, we stayed on and ate lunch with our favorite Pre-Kindergartner, and Alice comes in as he leaves.  We enjoyed having a few extra minutes with our Alice too!

later days

Picking Out Glasses

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

The twins have speech twice a week in the next town over, so after their visit one day, we went and picked out glasses for the twins, and put in an order for William's new lenses.

Grace picked out hello kitty, no surprise and Juliet found some my little pony frames that she liked.  Two of the three have come in, but we're waiting for the last pair before we go retrieve them. = )

It's much snowier here now:

later days

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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.

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