Halloween Parade & Party

Yesterday, the big kids had their school Halloween parties!  The families were invited for the parade up and down the street, so the twins and I parked to watch the parade.  As I unloaded Grace, she indicated that she needed to use the restroom.  So, despite the fact that we had parked at the end of the road, we quickly headed for the school to use the facilities.

When we came out of the stall, a little girl took one look at the twins and said "they look just like Alice!"  Considering that Alice didn't even know we were in the building, it stands to reason that the twins bear a striking resemblance to their biggest sister. = )

We stopped in each of the big kid's rooms to say hello, and tell them where we were sitting on the parade route.

We then headed back to the car, where we waited, and waited and waited.  Then finally the big kids came down the path!

William was showing off his ninja moves:

Emily spotted us right away!

I practically had to chase down my dragon Alice, who was in her own little world.

Then, last night we headed back up to the school for trunk-or-treat and a dance, and dinner!

I didn't get a before picture, but they were some excited kids after all the events.  Being a kid during this season is the best!

The twins have their parade at school next week, so look forward to those pictures coming soon!

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A Belated First Day

Yesterday we put in a 12 hour day establishing doctors up in Grand Rapids.  That is a long tale, and I would like to do it justice, so I'll save it for another day. Instead, I'll post about the twin's first day of school, despite the fact that this post will be out of chronological order.

Today, the twins rode the bus to their first day of school in Michigan!*

Both Grace and Juliet were ready to go, after a long wait!  They leave just a few minutes before I load up the big kids, and could not be happier to start their school year.

Grace

Juliet

A full counter, once again!

When they came home, they were all smiles, and can't wait to go back tomorrow!

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You can read about the big kids' first day here. And pictures from last year here.

*why yes, that is a snow blower you see in the background.  since we had frost on the ground and it is only October, it seemed like a prudent purchase.

Grace and Juliet are starting school!

This summer, when I enrolled the big kids (a week before the start of school) I asked about programs for my little girls.  They sent me to a school in the next town over, and the office staff there sent me to a website.

I filled out the online forms, received a computer generated message that essentially told me to be patient and that they'd get to me.

When we went in to the pediatrician, the nurse practitioner told me that a month before and a month after the start of school is busy time for them, and to give it until October. I wanted to know, so that I could get them in for private therapy if the school was not an option.

The beginning of October came, so I called the number on the email.  Like every other phone in this state, it went unanswered, so I left a voicemail.

Shockingly, someone called me back, but I missed the call* but her message said that she was out of office for the rest of the week.  I called her back and left a message that I had received her message. lol. (I think I'm funny)

Anyhow, after the weekend, she did call me back and we discussed getting the twins in for assessment.  Their paid program was full, but was more of a preschool set up, not a speech therapy environment.  

That afternoon (so fast for this state!) the lady to whom she had referred them called me back, and said that since they had an active IEP already, that they were eligible, and she would get their info over to the school.  Somehow they had been overlooked, but she was very apologetic. She also said they were pretty good about getting back to people the same day or next day.

This was the week that my kids were out on fall break, however, so I told her that most likely they were out too.

So it was this week that I heard back from their school.  It was Monday morning, when the very helpful office lady instructed me to go to the website that I had used to register the big kids, and set up an appointment.  She was hopeful that they might even be able to start the following Monday. I thank told her that normally I would sign off with her and log onto my computer to register them, but that I was out of pocket at the hospital with my son.

Tuesday afternoon, I made it a priority to register my little ones, but I was not able to commit to an appointment until Thursday morning.  After the appointment, we went to their school to check out their classroom and meet their teachers.

I think they would have happily stayed that moment if I had just dropped them off.

So, now, I'm waiting on a call from the bus system, to get their transportation arranged, and they are good to go (and quite excited might I add!)  They will go four half days a week M/T/Th/F, so my guess is that they will start Thursday.

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*apparently I'm part of the problem!

The Lesson is Tough

After William's incident, my mom and I traded out vehicles, and I resumed responsibility for my duties. 

When we picked up the big girls from school, they were super excited to see me = ) and very excited about a school sponsored skate party that night.

I told them that I would drive them over to the skate rink, if Billy would stay with them and bring them home, but I could not spend another night out.  Billy was also in tough shape, and we could not come to an acceptable compromise, so the answer was no.

The big girls were so disappointed, so in stepped Aunt Rocky!  She picked them up and took them to their event.  Afterwards, she even took them through the McDonald's drive thru!

William was mighty unhappy.

He was pouting, and didn't want me to take a picture of him. 

No little boy, you do not get to go roller skating hours after you are released from the hospital with a fractured skull & healing concussion.

We are now in the process of trying to decide what type of birthday party William can have.  On Wednesday, I'll try to remember to ask the doctors when he is released for normal activity.

In the meantime, I'm trying to keep him from climbing trees and "sliding" down the stairs in a blanket.

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William's ER visit

While this is not exactly part of William's battle with HPP, I do mention it, so I'm including the usual links: This is the latest post in the series of William, grace and Juliet's journey with hypophosphatasia.

On Sunday night, as we were saying goodbye to the Rosenthals, I saw William hanging upside down from the handrail.  Naturally, I fussed at him as I took him down and told him not to do it, because he might get hurt.  I walked into the other room to locate a pair of missing shoes, when I heard a thud, a short pause, and then a wail. I came out to find him lying spread eagle at the bottom of the stairs.  While none of us saw what happened, I could wager a pretty sound guess.

I was comforting William as the Rosenthals left, but was a little worried about William, since he fell asleep on the floor right next to the door after he finished crying.  Since it was well past bedtime, I was trying to get the girls ready for bed, but told Billy, that if William were to throw up, I was driving him to the ER. The words had barely passed my lips when he rolled over and began retching. = (

All 4 girls were super helpful and brought me towels, clothes, buckets, shoes, whatever I asked for.  Billy loaded William into the car and I grabbed a few essentials (like a phone charger and socks.)  Fortunately for all of us, my mom had just made the 3 day trip up from Texas and was on call to be me for my girls at home the next morning.

We had to go through a metal detector* on our way into the ER, which was a first for me, but they didn't delay. As we checked in, they offered William a wheelchair, which I graciously accepted, since I had carried him from the parking garage. The waiting room was busy, but we were sent on through to the pediatric waiting room.

There were a few patients in front of William, but we did not wait long.  I sent Billy some updates, and then we were taken to the triage.  When we stood William up to get his weight, he threw up again. = (

The nurse found him a room where we waited to see the doctor.

When the doctor came in, and started testing his neurological functions, he threw up a third time.  This was very concerning for her, which in turn made me quite nervous.

Just before 11pm, he had his first CT scan.  On our way, my phone chimed, Billy had not been getting my updates.  I started emailing him, sadly it was all bad news.

Back in his tiny room, the doctor came in and told me that he had a fractured skull, and a crescent shaped bleeding in his head, a subdural hematoma.  They paged the neurosurgeon to find out whether or not he would need to be moved to Grand Rapids (there is a dedicated children's' hospital there.)  They set him up with an IV and monitors.  He dozed in an out of consciousness.  He had developed quite a large bump on the back of his skull. = (

Once the doctor heard back from the surgeon, the instructions were to wait and repeat the scan in 6 hours.  They did one more scan before he could rest, to check for other trauma on his chest and hips.  Finally, some good news, it was just his head.

Sometime around 3am, I joined him in his tiny ER bed, because I was unable sleep in the provided chairs.  He was such a sweet boy and made a spot just for me.  The nurse brought me in a pillow and blanket too. Despite the recommendation to avoid this hospital for our pediatric needs (except in emergency) I was super impressed with their pediatric staff!

At 5am, almost exactly, they repeated the scan.  The bleeding had almost completely resolved, and was now a very minor epidural hematoma.

We were able to doze another hour or so before they moved him up to the PICU ward.  But this little boy was one on the mend:

The neurosurgeon on staff, as well as the senior staff doctor, resident doctor and student doctor all came in to take a look at William and test his reflexes.  He was much closer to being my normal little boy than he was the night before.

Sarah came by bearing gifts of coffee and some strawberry shortcake DVDs from my car!  Morning talk shows are not very entertaining for recovering boys, and that's what I had left in the car from bygone days when it was the family vehicle. = )

4700 ALP (marked "high") for reference: 149-369 is normal for his age

After the doctors finish their rounds, they discuss each case in a conference room, bringing in the parent, if available.  The only thing that did not impress me was when the lead doctor wanted me to look through a book of maladies, to see if William has a syndrome that has not been diagnosed.**  It was like the cri-du-chat episode all over again.  (spoiler: the twins do not have cri-du-chat)

When the doctor asked me about the hypophophatasia, he tried to correct me, because William's ALP level is so high, that he cannot possibly have a hypo- form of the condition.  It was quickly righted by mention of his medication, but frustrating that I have to go through it over and over again with insurance all year, then with the doctor.  I am thankful that he clarified, but I was easily vexed, from a night of little rest, and relief that William had improved so drastically in a short period of time.

He also pointed out that the fracture was along one of his old craniotomy lines.  His bone is apparently thinner than other patients this doctor has seen, which is not surprising.

After the rounds concluded, a child life specialist came by, allowing William to play in the room for a bit, pick out a book, a box of toys to take with him to his room, and some William picked movies!

When we returned to his space, he had been cleared to eat, and his food was on it's way! 

Avia and his sisters came up to visit and play, and bring me a non-hospital lunch!  Having his sisters around made him feel more like himself, but also tuckered him out. 

After they left and he finished his lunch, he fell into such a deep sleep, that the visiting surgeon had trouble rousing him.  While my fears were mostly abated, this rest triggered another bought of fear, and when the doctors asked me to weigh in on going home, I agreed that one more night would be in order.

After a nice, lengthy nap, William woke up refreshed, and begging to leave.  He asked me when he could take off his pulseox monitor, and I told him that it would come off when he was discharged.  He replied "but I am charged!"

He stayed up watching his movies on repeat for the rest of the evening, and finally at 11, I told him it was lights out.  Despite my history of not  sleeping well in hospitals, I was out cold.  William got a roommate in the night, and I didn't even hear them come in!  I guess the poor sleep the previous night, combined with the security that he was being monitored by professionals, allowed me a good night's rest.

The next morning, he was 100% back to normal.  The bump on his head was minimal, and rounds confirmed that he was ready to roll.  My mom got my girls up and out the door a second time, so that I could be there with him.

Respiratory came in with bubbles to make sure that his lungs stayed clear.

He had to do one final CT scan at 10am, but it came back with just a remnant of his mishap, and of course the fracture.

His nurse, Dee, was the same as the previous day, and she was fantastic!  She worked  to make sure that we could get out of there as soon as possible.  He was excited to have all of his monitors removed , and be able to put on regular clothes again!

She even ordered a copy of the CT scans for us to take to his day of appointments on Wednesday.

The hospital is right in downtown Lansing, and has a nice view of the capital from the west facing windows.

Here's hoping that we can avoid the ER for a while.  I am pleased to report, he has not climbed back up on the railing since we came home.  If I'm a little more grey the next time you see me, William is the reason.

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<what happened previously
what happened next>

*I'm not sure if it's a permanent installation or not, but I read about a shooting in a hospital in Kalamazoo (or somewhere) in the past few weeks.

** William has a very gaunt appearance, but he has my features and also bears a striking resemblance to Alice.  Hypophosphatasia is William's problem.  For some reason, doctors cannot simply accept this diagnosis, and keep attempting to add labels.

edited 10/22/17 to add forgotten details!

A weekend to remember

On Saturday, we ventured out in the rain to the mall, to find some winter clothes for Billy.  When we came back home, we found that the wind had knocked down a hollow limb from our tree.  This particular limb was home to a colony of bees. = /

We left it alone that evening, because it was still raining, but the next day Billy went out to move it.  Since it was a little chilly, he thought that perhaps the bees would stay put.

When he went out to load it into the wagon, they were less than happy to be bothered.

We discussed it, and he ended up tying it to the car and dragging it around to the back edge of our yard.  Hopefully the bees will either be content there, or find a new home before winter. = )

Saturday evening, we had a visit from the Rosenthals.  They moved up to Illinois a few years ago, and were attending a wedding here in Michigan, so stopped in for a quick visit.  We enjoyed seeing them, and had a nice dinner & evening with 8 children running amok. = )

As we were trying to say our goodbyes, William took a fall.  It wasn't the best of goodbyes, but we were happy to see them.  Hopefully we will be able to see them again before the end of year.

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Fall Break

Last week, the big kids had their first lengthy break from school, a full week of "fall break!"

We spent 2 full days in nightgowns, eating simple meals, and vegging out in front of computers.  Later in the week, we did have to get out to take care of business!

On Thursday, Alice and Emily had a dentist appointment, and in the afternoon William had a vision and hearing screening* so in between, we stopped in for a short game of bowling!

Alice almost beat me, and might have had we finished the game. = )

It was a short stint in the waiting room, before William was called in for his screening.

The kids saw a playground on our way out of town, and since we didn't have anything pressing, we stopped an played for a bit.

It was a lovely week of low key days, leading up to our rather exciting weekend.

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*William's school sent home a note that they wanted a copy of his vision & hearing screening, that he'd never had done. I had a copy of William's hearing test from the follow up appointment after his ear tube surgery.  However, I could not locate the results of his last ophthalmology exam (over a year ago) much to my annoyance.  So we ended up doing a screening for him during the break.

Fire Saftey at Story Time

This week at our little local library, they had firefighters come in to discuss safety!

The twins were lukewarm to the story, but loved exploring the firetruck.

As a PSA: don't forget to check the batteries in your fire alarms and make a family plan!

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October Days

I bought Emily a fancy tutu at a garage sale last winter.  When we moved, it was hung in a more prominent spot in her closet. Naturally, she could not wait to wear it!  I told her she had to wait until October.  Since October 1st fell on a Sunday, she waited until October 2nd to go full pumpkin.

And thanks to the internet, I found a cool way to use those plastic spider rings!

The weather here is not much different than it was this time of year in texas.  We never know how to dress for the day.  Do wear long sleeves? shorts? pants?  Is 67 degrees cold enough for long johns?

We do consistently need jackets in the morning, well, there was that one odd day...

Aunt Rocky spoiled us one morning with donuts (for the kids) and coffee (for me!)

The new fad around here is to hang up a blanket while watching the computer.

Emily tried to convince me that she was dying of starvation, because I wouldn't let her get out her snack out of her back pack for our 2 minute commute home.  I took out my camera to document her final moments with some pictures. She began to giggle, so I told her that dying people don't usually laugh. Apparently, that wasn't the response she wanted, because she grabbed some leaves and threw them at me.

They have a fun day up here called "Plaidurday" that they celebrate on a Friday, by wearing plaid.  Alice, Emily and William were excited to show their school spirit.  Juliet wanted out of the picture again, and I can't even begin to remark on how grown up Alice looks in this picture.

We used our fancy cups from the Prescotts for syrup with our pancakes.

Alice wanted to pose by the pumpkins out front, and since I don't get many voluntary picture opportunities with Alice, I jumped on it.  Emily is always game for a picture. = )

William saw a little boy climb a tree outside their school one day, so of course, the next day he had to try it.

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P.S.

I read that blogging/journaling several times a week might keep people from catching physical illnesses!  By way of disclaimer: I read it on the internet, and haven't done any further research. I'm willing to put some stock into it, because I certainly can't explain how I never went down ill during the 2 years of incessant doctor's appointments, other than the fact that I blogged about each appointment. That being said, I'm going to attempt to blog at least once a week in hopes to stave off sickness.  I'll let you know if I get sick despite this prevention. ; )