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.

later days

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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?

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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.

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Busy Summer

I love summer! I love the sleeping in, days in nightgowns, simple meals and long hours of daylight.  However, for the past two weeks we have been living it up!  Go, go, go!

I'm happy now to say we had a ton of fun, but have a very minimal schedule this week.  So, I'm updating my blog and catching my breath before August arrives.

William enjoyed two birthday parties, we went to the Eaton County Fair,  took a trip down the river in a canoe, spied all the animals at the zoo, enjoyed a murder mystery night with some super fun people, and went to a Lugnuts game!

This is how life looks in between. #hastags

One day all of my children decided that the 'no internet connection' game on chrome was more fun than the internet, so they all pulled out their wireless cards. #weirdos

Grace loves dressing up like Masha #mashaandthebear

Shopping online, at home while my children play and pulling up to retrieve all the things we need is the best thing in the world.  #clicklistforthewin

On they way to the library we found a #dimondalerocks rock and saw more construction, this time a road roller! #bonusfun

Catching lightning bugs in the back yard #stereotypicalsummer

The three little ones had to go in for a blood draw. #nofun

Emily had picked out a balloon from the dollar tree earlier in the week, so everyone else wanted one too.  As their treat, following our trip to the lab, everyone got a balloon.  A sweet couple, a few customers in front of us bought them for the kids.  #sosweet

I'm not sure what Alice was doing here. #flamingo

How they watched Coco for the first time #notyetasingalong

They opened their first box and found all sorts of goodies, including an ice cream kit. #favoriteitem

We marked another summer bucket list item off too #icecreamforbreakfast

I took almost two days to migrate my entire library from my old computer to my new one #onlytookayeartostart

And upstairs, I have fabric cut for my next two projects, which I'm hoping to finish this week! #bloggingfirst

Right before my mom left, we took a trip to Sam's, where we had lunch.  While I shopped, they saw a movie #HotelTransylvannia3

While Alice was at her summer camp, we also celebrated Cow Appreciation Day. #chickfila

Met up with some of my favorite ladies and their littles for a playdate at the park. #goodtimes

At one point, William managed to pull the horseshoe pole out of the ground.  It is a really long pole.  I still have healing blisters from banging it back into place. #wiwium

 

 Spent time reading every morning #20minutes

Wore pants around like a hat #sillygrace

Celebrated with Avia, the day before her birthday #germanchocolatecake

And met up with one of Emily's bffs for a playdate at the school playground. Ended up with some entertainment #portapottymaintence

I'm sad to be quickly approaching the end of summer, but we still have a few fun things planned before school is back in session.

later days

Emily Came Home Sick...

...again.

My poor Emily, all year, but particularly this semester, she would be fine in the morning, then suffer and be sent home in the afternoon.  Some mornings she would just be whiny and sad, until she had breakfast, then she would perk back up to her normal self.  

Her grades never suffered, and when we brought her in for a doctor's appointment, she saw one of the other doctors in the practice. Since she was not running a fever, or displaying any other symptoms, he sent her back to school.

So, finally, when she came with me, tearfully, the afternoon following Alice's field trip, I brought her home with me.  I made an appointment for the next morning with her regular PCP.

She had to come with us to the twin's speech appointment, and was her normal cheerful self.

When we went in, she knew exactly what the problem was from my description of Emily's symptoms.  Apparently Emily is protein deficient.  This does not come as a surprise considering how picky she is about her meat.  She gave us diet guidelines to follow, and sent us with bloodwork orders.

Sadly, these were fasting orders, and since my mom was in Texas, our only option was to head out early (6am) so that we could be back before Billy had to leave for work.

She was quite cheerful, despite the circumstances.

We made it back in plenty of time for our normal schedule, and with her new, improved diet, she had a much better day.

Her results came back normal, so we've just been supplementing her diet with high protein options of snack bars, joghurt, and in class snacks.  She's also become more self-aware, and will step out of her classroom with a snack if she feels an 'episode' coming on.

I'm glad we finally have answers to her chronic issue, and that my Emily is feeling better than ever!

later days