Dental Visits

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

We have actually had 2 visits to the dental clinic down at UofM, since the last time I posted.

This visit was just a routine cleaning for all 3, that had been delayed at least once.  William and Juliet got good, boring reports.  Poor Grace has to go in for some cavity fillings that formed in her poor soft teeth (the same ones Juliet had in the past.)  That appointment is next week.

Today we went back, for William to check in with his orthodontist.  I failed to take a picture while we were eating our lunch, but we did eat in the courtyard, as is tradition.

No braces for our boy just yet, he has a few bottom teeth that need to come out first.  They are wiggly, so if he is able to wiggle them out before the appointment with the regular clinic comes up, they won't have to pull them.  If not, we'll make a trip down for them to pull those two teeth, sometime before his next orthodontic appointment, in 6 months.

My friend Jessica takes her child to the same clinic every 4-6 weeks, so I'm hopeful that maybe one day we can carpool to break up the long, boring drive!

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William Returns to the Orthodontist

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

William went to see the orthodontist again, to see if he has grown enough for a braces treatment.

After driving through commencement traffic and a campus filled with graduating students and their family, we were happy to be in a conventionally busy waiting room.

His exam did not take long, even with the xrays.  The plan has not changed, we are continuing to wait.  He'll go back in 9 months to see if his baby teeth have fallen out and then they will make a new plan.

After the appointment, we went down to the coffee shop.  They had a new art exhibit in the atrium. 

And, since we arrived just minutes before they closed up shop for the day, William was gifted the last cookie.

Very thankful that these medical posts are so few and far between these days.  Also thankful that we have experts that are not too far away.

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Orthodontic Consultation

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

I am so pleased that this is the first post in a very, very long time that is just medical!

At William's last dental check up, they raised concern that with his early primary tooth loss, that his adult teeth would not have a clear path to erupt.  So, they sent us to the orthodontic clinic.  We had to wait a few months for an appointment, which was just as well, since we needed to get their office added to the list for the CSHCS.

The drive down was uneventful.  The entire building is under construction, so we tried to check in at 3 incorrect counters before finding the correct office. = 0

Once we were checked in, William worked on his math and reading that we brought.*

He had some trepidation about going, despite this just being a consultation, since he had two teeth pulled, two visits in a row last year!  There were a few tears, but he did really well!

After his very short appointment, we had lunch in the atrium.  

Essentially, we have no new plan, just paperwork to complete and then making a new appointment for x-rays to actually get to the point where we can have a plan. 

After lunch, we packed up and took a backroad home.  It was a pleasant day, and we stopped at a garage sale, where he scored a new treasure. ; )

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*to prepare for his appointment day, we rearranged our school schedule, so that all we would have would be math and reading.  I love that we didn't miss out on anything, homeschooling has been such a lovely blessing!

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Delayed Ophthalmology Visit

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

Due to some strange circumstances, William, Grace and Juliet's ophthalmology appointment was moved to early June from March.  With the corona virus closing everything down for a while, this turned out to work in our favor, since we were able to keep this appointment.

Sadly, the appointment was at 8:10am, which meant a 6:30 departure time for us, on a Friday, the last day of instruction for the school year.  

We made it on time, but Grace forgot to pack up her mask, so she wore on of the back up ones I carry, until we got inside and they made us all trade them out for paper ones.  In an unusual turn, I've been up to this hospital twice with Emily since the last time they came up, so everything was very different for them.

This was a dilation appointment, so we were there a while waiting for the drops to take hold.

Everyone received good reports and new prescriptions.  She also said that we could move out to a 4-6 month recall versus our current 3 month!

It's almost dystopian seeing my sweet little twins all dressed up, with bows in their hair and masks on their faces. 

We went to sonic afterwards, and I made a few phone calls that I needed to make.  One of them was to the eye glass center in Holt to see if they are open.  No one answered, so I left a message, but Friday messages are rarely returned on the same day.

We have a virtual appointment later this month, and William has an Ear Tube Removal surgery scheduled for July, but more appointments are rolling in now that things are reopening.  It's sure to be a busy summer full of doctor visits!

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Emily's MRI

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

Today Emily had her MRI up in Grand Rapids.  The appointment wasn't until 11:30, so Emily had time to finish up her school work before we left.

The hospital was not as busy as it was before Corona, but busier than our previous trip.

We wore our masks, as required, but they had us swap for hospital masks upon entry?

In radiology we had a little bit of a wait.  Emily replied to her teacher (via snail mail,) then worked on some mind puzzles, then colored the back of some papers I had in my bag.  

Once it was finally time to head back, she had to change into hospital garb and pick a movie to watch during the procedure.  I recommended one that she had seen, since she would not have time to finish it.  She picked Frozen. = )

I did my best to prepare her for the procedure, telling her that she would lie on a board that would slide into a giant 'donut' and it would be really loud.  When she saw the machine she said "it does look like a donut!"

They put on a headset and optical set so that she could watch the movie during her procedure.  I had to wait in the changing room (they did offer for me to go back to the waiting room, but it was further away.)

Once she was all done, we were good to go!  This was the longest I had worn a mask at any point since this started, so it felt good to take it off in the "safety" of my car!

Sonic was our next destination, since I needed something to look forward to about this trip.  We managed it in a short time, but with the interstate closure, traffic was truly traffic!  I felt like I was merging back on to beltway 8!

While we were waiting in the drive thru, the hospital called to let me know that the next endocrinology appointment will be virtual.  They gave me some instructions on how to enroll the kids (all 5 of them!) ahead of time.

I got another call, also from the hospital, letting me know that the doctor had reviewed Emily's scan and that everything looked normal.

It was a really nice surprise, since I figured we wouldn't hear anything for a while!

So, good news, it's probably not seizures, bad news, we still don't know what is going on with our Emily.

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Emily's Anticlimactic Follow-up with the Neurologist

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

Today we met with the neurologist. Parking was a breeze, fees were waved.  There were no other patients in the waiting room. We had very little interaction with anyone, though we did have to check in and get a 'visitor' sticker before heading to the appointment*.

This was Emily's initial visit with a neurologist, and William is the only other child of mine who has seen a neurologist, for fear of seizures.

After interviewing me, and her, and asking a ton of questions, and reviewing her EEG, his current opinion is that she is having anxiety, not seizures.  Seizures in HPP patients tends to be very apparent in their alp and B6 levels, and she has normal range in both of these.  I'm not completely ready to accept that it is not HPP related, especially with Billy's symptoms.  But either way we have to wait.

He has recommended some literature (that I've now ordered) so that we can treat the anxiety, but we are to follow up as needed.

This is good news, I guess.  The EEG is a test that can be 'interpreted' and therefore can be misconstrued or misread depending on the doctor.  I'll be keeping a log (something I'm actually pretty good at) every time she has an episode, and we'll work through the literature just in case.

She is scheduled for an appointment with the endocrinologist in early June, so we will revisit this then, unless something major happens to merit a visit.

So, today, I'm left with the impression that we travelled close to three hours and exposed ourselves to the nasty coronavirus, for an appointment that could have taken place virtually.  And we know nothing new. = (

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*Sarah gave us some masks that Emily sported during our trip!

March 6th, Results from the EEG

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 cold windy, cold rainy, cold snowy, cold 35F.

Today we woke up slightly early, so that I could go help out at the book fair. For the first 15 minutes, mine shopped. So, they were ready to go once breakfast started. = )

Once school started only a few students trickled through. At 10 I left the fair in the capable hands of the librarian (who had worked the register most of the morning anyhow.)

I left for the Hold UMC church sale straight away, and met my mother in the parking lot. We collected lots of treasures in our $5 fill a bag. = ) Surprisingly, I only spent about an hour shopping, so I had time to come home and sort before going to collect my children from their second half day.

My mom invited Juliet to spend tonight with her, so I packed her an overnight bag before I even had a chance to ask if she wanted to go. Thankfully she did!

As my crew loaded up they were very excited about our planned McDonalds lunch. And, I had a surprise up my sleeve. Juliet's BFF's mom messaged me back about joining us, so we were able to surprise our Kindergartners with a playdate!

It was a pleasant way to spend a couple of hours. The kids played (and kind of ate) and I got to chat with a new mom friend!

While we were there the call to set up the next medicine order came in, and then the call I'd been waiting on, that met my worst expectation came in.

It was the kids' primary care doctor (never ever good) on the phone.  I knew she wasn't calling to tell me that Grace had strep, so the dread set in fast.  She looked at the results of Emily's EEG from January*.  Their were indications of misfiring** in Emily's frontal lobe while she slept.  She's referring us to a Neurologist in Grand Rapids.

I don't know how long it will take to get Emily established as a new patient.  Googling misfiring of the frontal lobe did little to calm me during this next wait.  Emily is handling it exceptionally well.  In fact, she hasn't even brought it up again since I told her.

Emily has hypophosphatasia. Seizures can be a symptom of hypophosphatasia. Please let it be caused by hypophosphatasia and not something new or worse.

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*I started trying to get the results about 2.5 weeks after her test, but I was calling the Endocrinologist, and since she didn't order it the results weren't send to her.  Their PCP is on a different network, so the results weren't automatically sent to her either.  Their office had to call and request the results, which took extra time.  So, it has been a very long wait for bad news.

**I'm 90% certain this is what she said, but I was not in a position to write anything down, so if her terminology varied from this, this was what my mind extrapolated.

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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. = (

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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!

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January 8th

Today was a cooooooooold breezy day with an expected high of 25F. But I never saw it reach that high in my travels, so I would claim that the high today was 22F.

Today was an early release for my little ones and we had Willow coming over, so I had to squeeze my day in quickly!  There was a dusting of snow on the road, but the salt trucks had come through, clearing out our path to the school.

After dropping off my dear ones (and having to jump out of the car to help unstick the frozen door in the car line) I headed home to check the mail and load up the recycling that I bring to dart (carboard & foam.)  

I was due to meet one of my MOPS ladies a the thrift store in Mason.  Since I was running early, I stopped by Kroger to grab some bread (my kids are on a toast kick!)  I still had time, so I took the recycling too!

I still arrived before they opened, but met with my friend moments after they opened the doors!  We were shopping for fun dresses for our meeting tomorrow. Neither of us found anything. = (  It was fun to get together though. = )  Since I was there, I also brought a box of donation items that I was happy to get out of my house!

Also, it started snowing again, but not for very long.

Billy had a meeting, so we weren't able to go for our regular coffee date. = ( I did get my expected call from the jewelers that my ring was ready!  It looks soooooo pretty, just like new!

Since I was in Okemos, I enjoyed a Chick-fil-a lunch, of course, and grabbed some for a few of my favorite teachers too! ; )  Sadly, the roads in Okemos and East Lansing were a-w-f-u-l.  It took me so long to get to the school that some of the teachers had already eaten lunch! = (  At least Chick-fil-a is good cold too. = )

As I finished up my deliveries, one of my MOPS ladies called me, because her little boy has low ALP.  I'm so worried for her and her babe, hopefully it is not HPP, but if it is I hope I can help her navigate this crazy condition.

Talking to her had me pulling out my old files and reliving one of the scariest and craziest parts of my life.  I'm happy to be out of that time.

I picked up my 5, plus one and they all got to work on their homework.  Everyone worked hard and finished quickly.  Except for Alice decided to dig in her heels about halfway through correcting her math review. It took her almost until Billy got home (despite the extra hour or so) for her to finish her regular homework, eye therapy, and piano practice. ugh.

We had spaghetti for dinner, everyone ate well.  I'm waiting until after Willow leaves to do shot night, because no one likes shot night.  = (

Tomorrow is our table's turn for food at MOPS, so I prepped a crock-pot Taco Soup that I will cook overnight, to bring tomorrow.  = )

The kids have been playing almost non-stop since they finished their homework, some I'm hoping everyone will sleep well tonight!

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Review of Grace's Sleep Study

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

Back in September, Grace had a sleep study done.  They called with results a couple of weeks later, letting me know that everything looked normal.  We still had to schedule a follow up with the Pulmonologist, but he didn't have an appointment in Lansing until December.  Since nothing seemed off, we waited.

He looked at her chart, and results and declared that she looks good.  Her oxygen was at 99% in office, which is phenomenal.  He wants to do one more test up in Grand Rapids in about 6 months, just to have it on her chart.  But nothing looks amiss and she is doing awesome. = )

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We also now have a date for Emily's EEG.  I was able to schedule it for the same date as William's 3 hour blood draw!  This is so fortunate, because Billy will be able to drive us up, while I keep Emily awake, and at the hospital he'll be able to stay with William while I monitor Emily.

I want to say thank you to whoever has been praying for my sleep. I have been worrying about this during the day, but have not lost sleep over it once since the last time I posted, so thank you!  Please keep up the prayers, my sweet little children need them.

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News from the Endocrinologist

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

On a Friday in mid-November we made the drive up to Grand Rapids. 4 (well actually all 5, but I missed that Alice was actually on the schedule too) of my little ones had appointments with the Endocrinologist.

I have a special bag that we only bring out on these long trips to the hospital. They were pretty well entertained while we waited.

Grace and Juliet looked good.  They are still on the curve, and growing well.  She wanted regular bloodwork for WGJ, and ordered x-rays for all 4.  Emily's were for a baseline, WGJ were just routine.

First we discussed Emily and her crashes.  The doctor wanted us to meet with her regular pediatrician.  She wants to explore the idea of possible migraines, but is not convinced that this is an endocrine issue.  So, we have an action plan in place at her school and home for that.  I also have to keep a log of her crashes & recovery times.

While I was subbing at the kids' school one day, the hospital called (twice), I figured that it was just lab results (and they failed to realize that multiple results were going to be addressed with the same phone number.)  So, when I checked my voicemail and heard the doctor's voice, my heart sank.

I don't like it when the doctor calls.  They only call with bad news, and they are the ones that call because they can field all the questions.  So, I called her back.

William is currently under the curve in weight, and barely hanging on in height. The doctor called because this, combine with the lab results of a low growth hormone have her concerned.

Apparently he makes two types of growth hormone, one is related to diet, the other is more of an automated system. It is difficult to get a solid answer from a single blood draw, because of the cyclical nature of the growth hormone.

It is extra concerning, because they are currently testing the drug he takes for his hpp on people with small stature as a type of growth aide in Japan.  But he's already on it. = (

So, she wants him to come in for a 3 hour test  They will give him a stimulant to trigger his growth hormone, and, through an IV, draw blood every 30 minutes.  His appointment isn't until the last day of January, which is such a long time to worry over my little boy.

We met with the pediatrician for his yearly check up, and she will follow his tests in the computer.  She recommended adding pumpkin seeds (high protein) to his diet, in addition to the protein milk that the endocrinologist requested we use.

Emily left some art for the doctor (& nurses.)

On our way to x-ray.  I told them we would do this a single time (as we had a tight schedule to keep.)

Xray was a little slower than normal since they had just upgraded their system, so when we left, we didn't even have time to eat our packed lunch.  We headed straight for ophthalmology.

In the waiting room, Emily was doing some brain teasers with me.  She figured out the first one before I did! I was so proud.

Emily wasn't on the schedule for the eye doctor, but the other 3 were looking good.  No patches needed, and we get to move out to a 6 month schedule!  Unfortunately, next time they will have to be dialated, which makes for a longer day.

We headed back to the cafeteria to enjoy our late packed lunch.  We were able to take our time, since the lab work that the doctor had put in could be worked in around our schedule.

After 3 quick blood draws, we were heading home!  I felt like this trip was easier than usual, probably because I had Emily, who is such a good helper, along.  = )

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At the follow up with the pediatrician, for Emily, we discussed the endocrinologists migraine theory. I'm not completely convinced, but we're going to follow her directions just the same.  After Emily described her symptoms, in great detail, the pediatrician wanted her to go in for an EEG.

Her symptoms could be the aftermath of some very short seizures.   This theory seems more plausible to me, as seizures are a known symptom of hypophosphatasia.  I haven't scheduled her appointment yet, but I'm hoping to swing it on the same day as William's test.

Her instructions were that Emily would have to go to sleep, as usual, then I would have to wake her up at midnight and keep her awake until the test.  And, she doesn't get any caffeine, including chocolate. = /

Between William and Emily my sleep has been a little less restful than it was.  Hoping for positive (or negative as the case may be) results from all of this testing.  And that we can get them both healthy soon.

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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.

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A Nice Improvement

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

Just a few short weeks after Emily's trip, we found ourselves back in Grand Rapids for a scheduled visit with the Ophthalmologist, this time with Alice and without Daddy and Emily.  

Preparing to go is always so colorful.

They are continuing to monitor for pressure on the optic nerve.

But William and Juliet received excellent news: they no longer have to wear their patches!  We had been quite consistent with it all summer, so this was a nice pay off. = )

They will return in 4 months for a routine follow up.

We went to the outdoor pavilion to eat our lunch, and they played for a while before getting back in the car to make the drive home.

It was a much less emotional trip for me than the previous one.  I'm not looking forward to October's visit though.

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Unsurprising, but Disappointing

Many of you know that William and Grace and Juliet, and most recently Billy have all been diagnosed with Hypophosphatasia.  We are now adding Emily to the list of confirmed hypophosphatasia sufferers.

For the past two years, Emily has had 'crashing' episodes during her school day.  Getting extra sleep and having a snack at the ready helped for a while.  When the symptoms continuted, we had her on a high protein diet, which also helped.  But at the end of the school year, she was crashing every other day and no amount of sleep or protein seemed to stem off the crash. 

When we went into the pediatrician, I realized that her yearly appointment had been skipped, since we were attempting to realign her schedule closer to her birthday.  She wasn't due for any shots, so it seemed like a good year to do it.  However, missing this appointment led to an oversight of her annual metabolic panel testing.

So, the pediatrician ordered the bloodwork, and this year, she had low ALP.  Almost half of what it should have been.  

Aside from the crashing, she has no symptoms.  We made her first appointment with the Endocrinologist in July.  Her first response was to have Emily complete a genetic spit test, she also ordered a kit for Alice. 

I called when we returned from our camping trip, but they didn't have the records yet.  I received a call back that afternoon, from the Doctor*.  Emily has confirmed hypophosphatasia.

While we were chatting, I pulled out the folder with William and Billy's results.  Aside from the big "positive" on both papers, most of it is so technical it is just jargon to me.  On William's paper, he has 2 lines of confirmed hpp strains.  Billy only has one.  Emily has the other.  If my understanding of genetics is correct, this means that William and Emily had to get the other strain from yours truly.

We still don't have Alice's results, but I would wager that the likelihood is high that she has one or the other.  We don't have access to the results of the twins' genetic study in California, and haven't had it retested, but my guess is that they also have the misfortune of inheriting both.

Once we are able to get Emily taken care of, and Alice if need be, I've asked the doctor for a referral to a family genetics doctor.  This will hopefully help us to better understand what all of the numbers mean for our health and plan for the future.

As of right now the endocrinologist is reaching out to some of the experts in hypophosphatasia to see what they recommend for this particular manifestation of hpp.

This post has been months in the making, and it still hurt to put it in words.

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*Calls from the doctor are my least favorite.  Seriously.  I understand that the reason they call is so that they can field all the follow up questions, but they only call with bad news. = (

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Doctors, Doctors and More Doctors

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

The week prior to seeing the pulmonologist, Grace had to do some testing.  When we met with the doctor on Monday morning, it was just the two of us, Avia kept tabs on the other four.

The doctor essentially said that he doesn't see any cause of concern from her testing, or in office observation.  He wants to do a sleep study, but the first time that would work for us and them wasn't until September.  He did say that her tonsils and adenoids were large comparative to her size, but wants to evaluate the results of the sleep study before we make any plans.

Avia was taking the other four to dollar tree, so I offered Grace the opportunity to go somewhere fun as well.  She picked McDonalds. = )

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The next appointment was on Wednesday.  The twins had to return to the dentist for their crown.  Plan A didn't work quite as well as expected, but well enough that they were able to build up the middle of the tooth and just shave the sides.  The dentists were quite happy with the fit of the crowns.

We will not need to return until their regular 6 month visit this fall. = )

We also saw Hawkeye again!

And Grace wanted a picture of the squirrel to show daddy.

On campus. I thought it was ironic considering the location.

On Friday, it was Alice's turn.  She had an appointment to pull one of her baby teeth that was overstaying it's welcome.  Avia took the other ones over to a park during her appointment, so when we finished, we walked over to the library to read while we waited.

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

The following Thursday, William, Grace and Juliet all had an appointment with the Craniofacial doctor.  He is the only yearly doctor. He doesn't have to keep super close tabs, as the other specialist will notify him if they find something concerning.

He does not have any immediate concerns.  He did warn me that as their heads grow and change, there many come a time when they correct the shape of the skull.  This won't happen until they are around 10 years old.  It would be an extracranial procedure, with a single overnight stay at the hospital, and no blood transfusions or ICU.  It only takes around a week for most patients to recover, and they would cut on their existing scars.

I'm not elated by this news, but it sounds like a fairly straight forward procedure.  As they age, I know they will have more opinions and preferences, so I'm glad it's still a few years off.

Aunt Rocky brought us donuts!  The big girls and Avia had already gotten into theirs, but we hung out in the parking lot while everyone finished their treat.

You'd never know that this isn't aunt rocky by just glancing in the rearview mirror:

 (it's Emily)

In a few weeks we go up to Grand Rapids  for an appointment, but thankfully next week is looking nice and void of doctors!

later days

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