Saturday, August 5, 2017

On iPads in Mass and Other Perspectives

I was sitting in a hospital room, holding Tessie on my lap, wrapped like a little burrito, while the EEG tech tried to attach electrodes to her head.  A young woman was there whose job was to help advocate for Tessie and to help entertain her.  She was holding an iPad with a screen saver that showed bubbles and lights, in hopes of distracting her from the thick paste being pressed against her head.


It wasn't working.

During a quieter moment, she mentioned how great the iPads were at helping kids through procedures and I said that my soon to be seven year old with autism was about to get one from her birthday.  I was excited about the apps that it would give her access to and what it could mean for helping her communicate.

The young woman's face fell.  "I just hate how when kids have them it's all they do.  They just stare at them all day.  I think it's really sad."

I just nodded and turned my attention back to helping Tessie stay still in the awkward silence that followed.

In the last week I've seen a half dozen articles being shared around my feed about the evils of iPads, iPhones, and everything else with a screen on it.  It's the end of civilization, the end of society, the crisis of a generation, the headlines scream.  Friends share them, agreeing emphatically and talking about how they would never.

There are many assumptions made about parents who would give their child such a device.  Not paying enough attention.  Letting screens do all the work.  Wrapped up in their own Facebook feeds.  



I started typing in my head (Oh there you go, typing in my head, while driving no less.  Add that to the list of parenting sins going around these days), formulating this post.

I thought back to a debate I'd read recently where someone was horrified that there had been a child in church with an iPad on their lap.  Should I go to the priest? the person had asked.  Would you say something? she went on.  Should I tell the parents how how wrong they are to allow it?

Many people would.  Many people were disgusted, horrified by the horrible parents who would allow such a thing, in Mass.

Perhaps I should begin with the disclaimer, on this particularly controversial subject, that Maggie doesn't take her iPad in at Mass.  She actually doesn't use it all that much.  If I turn it on and give it to her it will gleefully amuse her for an hour.  Maybe.

Allow me to be sidetracked for a moment, by our tenuous relationship with screens.


When Maggie was about three she started leaving the room every time a TV went on.  If she was in the room, she would watch it from the side, out of the corner of her eye.  But that was rare.  Usually she would flee.  When we were on a plane and she was sitting next to me, she reached over to my old Kindle paperweight, and turned the screen over, so that she wouldn't have to see it.  Apparently even on my lap, off to the side, it bothered her.

A year or two ago an autism communication app came out and the video of the father who had designed it to help his daughter quickly went viral.  A dozen friends messaged me about it, and posted it on my wall, and I agreed heartily that it was amazing.  But I didn't think it was for Maggie.  She still turned away whenever she saw a screen.

Whether it was some sort of visual processing issue where she was overwhelmed or could see the pixels more clearly than the normal person, or what, didn't really matter.  She couldn't stand screens, despite her vision tests being entirely normal.

So I was thrilled this year when she finally began to be interested in the iPads at her therapy center.

She figured out the pass codes that her therapists were using, even when their hands were shielding the numbers.


And that was when I knew we might be ready to try one.  Maybe those apps could help after all.

She got hers for her birthday, but it took a while to find a case that would work.  Apparently Otter Box hasn't yet come out with a case for the new iPad and all of the cases that were out looked like something that she could snap in two (we finally found on that the worker at Best Buy assured me was comparable to the heavy duty Otter Boxes).  So last week I programmed it with mermaid apps and autism communication apps, and locked it down with child safety features, and I handed it over.

She sprinted to her room and climbed up to the top bunk and sprawled on the mattress.  When I peaked in she said "out please!" and climbed down to help me close the door.  I wondered if I'd created a monster and began to come up with limits to how much she would use it.

An hour later she rejoined the family downstairs, leaving her iPad behind.  I retrieved it at bedtime from the place she'd left it. I brought it with us and took it out four days later at her doctor's appointment and she was delighted.  It helped keep her much calmer than she usually is around people in scrubs.  And then, two days later, I brought it out again and she spent fifteen minutes playing with it before she decided to do something else.


She already takes between 17,000 and 35,000 steps a day according to her GPS.  So the worries that the woman helping me with Tessie expressed about kids and their iPads, aren't really on my radar.  But what does keep popping up into my consciousness, is the perception of parents who let their kids have iPads and the harsh judgment of what it must mean.

Back to the red hot Mass debate.

I thought about it last week, in Mass, when two adults with greying hair came into the cry room and sat behind us.  Their phones kept beeping, every few minutes.

Phones in Mass? I thought for a moment, when they didn't turn off the sounds and the dinging continued. Those thoughts, immediately judging others behavior can be pesky and hard to shake off completely.

They probably have a very good reason, I pushed the earlier thoughts away, trying to refocus.  They very well could have a sick parent in the hospital or some other emergency and they're trying to attend Mass while waiting for some other news that can't be missed.

Midway through the phone dinged again and they jumped up and ran out.  I'm willing to bet that they had a pretty good reason for not wanting to miss whatever message they were waiting for.

And it got me thinking again about how we judge others at Mass.



That kid with their iPad may not be verbal and that device on his lap might be the only way he has to communicate with the world.  And yes, even during Mass, we don't take your voice away so that you can't communicate in an emergency.  Or maybe they can speak, but Mass is painfully overwhelming.  The smells and sounds and intensity can be too much and that iPad, and even headphones, might make it bearable so a family that would otherwise not be able to be present can participate.

There are so many reasons and I'm sure I'm missing some that I've never considered because they aren't part of my experience as a parent, at least not yet.

I think we might do better welcoming those with differing abilities, and their families, into the church, if we give people the benefit of the doubt.  If we swat away those uncharitable assumptions and remind ourselves that other people might have reasons that we can't even begin to understand.

Not all disabilities are visible.

Or it could be something else altogether.  There are quite a few Mass and prayer apps out there that people use to help them follow what's going on during Mass.

Yes, technology has drawbacks.  Online bullying is a major one, which many of the articles I've seen this week mention.  And I do believe balance is important.  And protecting our kids.

But I'm also not comfortable with ripping someone's voice away from them because of appearances.  Let's not throw the baby out with the bathwater.

And next time you see someone at Mass with a phone or iPad, if you're bothered, try to imagine the most charitable of reasons as you refocus.  And maybe offer the person, or family, a smile.



And for those looking for more about this subject this article (Screen Backlash is a Disability Issue) is worth a read.

Thursday, July 20, 2017

The Cry Room, Contempt, and Why I'm so Tired

A few times a year it seems like the Catholic Internets break out the old Cry Room Debate, which is usually hotly followed by the Do Children Belong in Mass Debate, and I scroll through ridiculously long comment threads where individual comments also have their own ridiculously long responses, and remind myself that it's usually wise to just stay out of it.

Mostly I do.  


I've spent a month trying not to write this.  I wrote the last two posts particularly trying to force this one out of my head.  

When I got up and walked out of the second Mass in three weeks I knew it would be coming soon though, that I would have to get the thoughts down on paper and out of my head.  I walked fast, holding Maggie's hand, and we walked over a mile and stood by the ocean until she was tired and said "sit down, please?" and then Paul found us and I quickly said "I know we left but she deserves a doughnut" and he nodded because she wasn't the one who had done anything wrong. 

I'm so utterly and completely tired of being glared at during Mass.  

We stay in the cry room.  We do it because I'm tired of the looks that we get when Maggie gets excited and makes a little high pitched chirping sound, or looks up at the ceiling and squeals.  And because my stress level is considerably lower without those looks.  

Inside or outside the cry room I'll spend all of Mass working with her on being quiet, on sitting still, on sitting up, but at least inside the cry room no one will turn and shake their heads while glaring at me.

Over the years I've heard many people say that families are welcome in the pews and should stay out of the cry room.  But reality is harder.  



Let me go back.  A month ago as we were getting ready to go to Mass I felt a heavy weight settle in my chest.  "You've seen it too?  I just don't get it?  It wasn't like this for the last year.  And all the sudden every week?" I peppered Paul with questions.  

He had noticed it. It was impossible not to.  Maybe it was the snowbirds?  Certainly it wasn't something that used to happen, but now it was happening constantly since the school year had ended and summer had started.  Or maybe it was closer to Easter?  Yes, Easter Sunday was the first time I remember someone catching my eye and then looking at our family with such pure disgust from a couple feet away as we filed forward in line.   At the time I thought it was probably someone who was there for their twice a year stop in, but the shaken heads and glares had persisted.   

We love our parish.  We love our parish school.  Of course the vast majority of people are welcoming and...not jerks.  But I couldn't help but be troubled.  

It doesn't bother him nearly as much as it bothers me.  But I hate it.  I hate walking up to receive the eucharist and having on average  two or three people turn around and glare at my family.  

They do it on weeks when the two year old is being a two year old and they do it on the weeks when everyone is behaving exactly as they should for the two minutes that we're actually walking down the aisle and back to the cry room.  

The first ten or so times it happened I smiled brightly and made eye contact with a "maybe you're accidentally giving my family a death glare" sort of look that was as friendly as I could force it to be.  Usually the person looks away, only to track down my family again and glare, often shaking their heads.  



I know that I certainly can have a very serious expression on my face without realizing it, so I try to give the benefit of the doubt, but when a person is radiating disgust and anger two pews up on the aisle, and turning completely around to crane their neck, it can be hard to miss, even when you're trying really hard not to see it.  

It was the same morning that Paul and I had discussed the looks that really broke me.  My parents were visiting.  We had a four to five, adult to child ratio, so I was cautiously optimistic.  I was struggling with getting Tessie out of the car and told everyone else to go ahead.  I'd meet them inside.  

And that is how I came to be walking into the cry room behind a lovely family, who immediately stopped on the threshold when they saw my family sitting in the front row.  Maggie was weeping like her heart was broken.  

She has had a really hard time since the day of seizures, and this was shortly after she'd had them.  

The mother of the family who was frozen in the doorway of the cry room was wearing a lovely pink head covering as she turned, taking her two older children by the arms.  "I am not going to be putting up with this crap!" she said loudly to her husband as she glared at my daughter.  

"It's a cry room," I said, my hands shaking as I reached for the door.  "Sometimes there are children in it who are crying."  Her husband stared at me, mouth half open, but she didn't appear to have heard me in the midst of her tirade.  




Maybe if the hostility was a one time I wouldn't have burst into tears.  Maybe it's because it feels like Mass should be the one place where I don't get glared at and don't see those disapproving shakes of the head.  

Maggie couldn't stop crying either and we retreated outside together, where she sat in my parents car and ate doughnuts, and I sat in our van, nursing Tessie and sobbing.  The one incident was a culmination of unrelenting weeks of smiling through the contempt and pretending it didn't bother me.

Then last week arrived.  We were on the road.  The rest of the family had gone to various Masses.  We were waiting for Mass at a parish with a cry room.  And so it came to be that Paul and I took Sadie and Maggie and entered the beautiful blue walled parish while the other kids played back at the house.  

Paul asked where the cry room was and an elderly man pointed the way.  We went and sat down.  I started the weekly routine.  Sit down.  Shhhh, shhhh, shhhh.  Look it's Jesus.  "Love you Jesus."  That's so good Mags!  



An usher looked in and shook his head, radiating disapproval.  Maggie wasn't making noises in that moment.  I was holding on tight to her as she sat next to me.  In those ten seconds she looked like any other perfectly normal seven year old who was old enough to be in the pews and the usher made it clear with a long glaring gaze that he didn't think we should be in the little room with the large window either.  

Fifteen minutes into Mass she got up and leaned close to the glass, peering through it across the church at the altar, her face glowing.  My heart felt warm.  

And then his face was there glaring at us disapprovingly through the glass.  

We shouldn't be there.  


And so, before I made a scene and unleashed the anger that was boiling up in my chest as he glared at my daughter, I got up and took her hand and walked out, feeling sick to my stomach as we walked down to stand beside the ocean, with Maggie talking in a sing song chirp about mermaids all the way.

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It wouldn't bother me so much if I was the one being glared at.  But my kids?  The mama bear inside me has been poked and prodded week after week by seeing these looks directed at them.  And I can't take it any more.  

Except I do.  Because the Eucharist. I can remember why I'm there.  Just barely.  But I'm so, so tired.  

I can laugh now when someone in the line at the super market inquires about whether we're "done yet."  There's little that I haven't heard from complete strangers, and while it used to bother me I can genuinely now laugh at the ridiculousness of so much of what I've heard.  

But in Mass the one place where maybe we might be safe from the contempt?  The place where I work as hard as I possibly can to not bother anyone, while teaching my children about God?  

---------------

As most of my readers know I'm a convert to Catholicism.  I've only been here for a decade.  And that means I was Protestant for long enough to remember what it's like to go into a church and actually be welcomed to the service by people who don't act like your being there is a massive inconvenience for them.  I remember what it was like to go to church with people who actually seemed genuinely happy to see me (and I remember what that was like when our girls were tiny too, before our family became too big, or too loud, or too something).  

I'm not going anywhere.  I believe that the body and blood of Christ are there at every Mass and that alone is enough to draw me back.  But I worry about my kids who are getting old enough to notice the contempt.  Or that someday someone is going to make one too many rude comments and instead of the "Bless your heart" I sometimes rehearse in my head I'll end up being lead to my car shrieking like a crazy person.  



-------------

You don't need to praise families with little kids who are obviously doing the best they can.  But if you're out there at Mass, and for some reason you find yourself distracted by a family with a small children maybe offer up a prayer for them instead of a hard look.  And maybe say one for me too.  

I need it.  I've made it through two of the last four Masses I went to before I went outside with tears in my eyes and it wasn't because my kids were the ones being naughty.  

Sunday, July 16, 2017

Date Days: A New Family Tradition

I came up with the idea of wanting to start having Saturday "Date Days" with the kids quite a while ago, but when Paul was working nights as a doorman and days starting up his own business I knew it couldn't possibly be anything more than a dream.  Then he started a job that allowed him to stop working days and nights, and his weekends are, for the most part, free.

Almost immediately I brought up the idea of us taking turns every other weekend taking one of the kids out for some one on one time.  I tapped it into our schedule so it looked like this: Week 1- Mommy and Sadie, Week 2- Daddy and Maggie, Week 3- Mommy and Patch, Week 4- Daddy and James, Week 5- Mommy and Tessie, Week 6- Daddy and Sadie, Week 7- Mommy and Maggie, Week 8- Daddy and Patch, Week 9- Mommy and James, Week 10- Daddy and Tessie.

Next week will be Week 10 and yesterday was "Mommy and Jamsey Time."



I am so glad we've been able to start this little tradition.  Some weeks it gets put on hold (like last Saturday when we were driving across upstate New York and Massachusetts on Saturday) but then we pick up where we left off the next Saturday when we're back in our normal weekly routine.

Each week Paul or I talk with the kids or plan a surprise.  The big kids usually have tons of ideas about what they want to do. Especially Sadie.

With the little kids it can be a little tougher.  James was the perfect example, when earlier this week he told me he wanted to go out to ride on an airplane and eat at a Wonder Pets restaurant (he finally decided on "Wonder Pets Lobster" also known to non-two year olds as Red Lobster, for a kids Mac and Cheese).


So far our days out have looked something like this:

Sadie and I went to see Beauty and the Beast.  We both loved it.

It was extra special because in the past we've been lucky if we sneak out to see a movie once a year, and for our special day we sat in the big comfy seats and Sadie ordered an Ice Cream Sunday and warm chocolate chip cookies.  And of course we got dressed up because getting dressed up is one of my princess loving girl's favorite things.


Patrick (and Maggie during her Daddy Day) were both in luck during their weeks because there was a fair in town.  I had a hair appointment earlier in the day and Patch begged to tag along (and sat patiently during the entire appointment) and then we were off!

He went on the rides at the mall, we went out to lunch, and then we headed over to the fair to ride the rides until we were both so tired that it was time to head home.


Figuring out Tessie's day was a little tougher, but I started out thinking of Tessie's favorite thing: bread.  So we went to Logan's for rolls (and grilled cheese), which I knew she would love, and then we headed to the zoo where she giggled and giggled on the swings and then we walked around and looked at all the animals.


Maggie's day was definitely one of my favorites to plan, and if anything, the challenge was fitting in taking her to all the places that I knew she would love.  We started out by driving to the lake.  At first I stayed right next to her, but after a while I saw that she understood that we would have to leave if she went outside the buoy lines, and she stayed in them, splashing and playing with her mermaid dolls, while I sat on the edge of the water, ready to jump back in if she looked like she was going to go past the lines.  And she didn't.

After the lake we stopped by the store and got her new shoes (she loves shoes and is so hard on hers that she constantly needs new ones), and then we went to her favorite restaurant for a steak burrito bowl.  The last part of our day was a trip to the water park, where we swam and pretended to be mermaids together for an hour before heading home.


James' day was by far the hardest to plan, probably because he's with me all the time and since it's just him and Tessie and me in the mornings we pretty regularly do things like go to the zoo, and go the science museum, so doing those things are kind of normal parts of his day.

I finally gave him a few choices and he declared the mall to be his favorite.  So we went and ate pretzels, and I got a handful of quarters so he could go on whatever rides in the little mechanical ride area that he wanted (that never happens!) and he played in the mall play area, and then we went to the bounce place, which he had all to himself (he doesn't bounce, but he loves the toy area in the bounce place).  Of all the kids he definitely missed having the other kids with him and kept talking about missing everybody else.

We ended the day by going to Red Lobster where he got to pet one of the lobsters, which may have been the highlight of the day.


And that is how one of my new favorite family traditions began.  We've always been able to carve out one on one time during the day, but being able to go out and do things that are hard to do in a big group has been so much fun.

Saturday, July 15, 2017

The Birthday Weeks

The last month has been a whirlwind of birthdays!  Sadie turned nine, Maggie turned seven, and Tessie celebrated her first birthday, all within two weeks and we were lucky enough to be able to celebrate both with my parents when they came out to visit and with Paul's family when we made a trek back to the east coast for a fun visit.  

Putting together little picture collages to see how they kids have grown each year has always been one of my favorite things, so before I sprint off for a special James-Mommy Day (more on that later) I wanted to share how big everyone is getting!  

The first birthday was our girl who was born on the longest day of the year.  She had her special day planned down to the hour (and had a birthday party a few days later at the Y we go to).  She told me a few days earlier that she "can't believe she's almost a teen ager" and we've laughed about that quite a bit since then.  Not quite.  


Our little firecracker was the third birthday of our birthday weeks.  Every year she gets fireworks and this year was no different.  

I cannot believe how big she's getting.  I kind of feel like she was just three yesterday.  So how is she seven now?  

She's getting ready to start her very first year of school at a public school around the corner from her big sister's school.  She's also taking riding lessons and I'm so excited to see what this year is going to hold for her!


The birthday sandwiched between the two big girls was our Super Tessie.  She has grown so much and is doing so well.  Her first year was a roller coaster and I'm just praying that her second year is less eventful!

Here's a month by month glimpse of her first twelve months!


Friday, June 16, 2017

The Second ER Trip

I should probably begin with a disclaimer that I should have put into my last post.

Most of the staff at the hospital was amazing when we took Tessie in last week, from the triage nurses, to the ER nurses, to her nurses, the nurse assistants, and the students that spent hours in our room with her.  And three of her doctors (out of five) were fantastic trying to work to figure out what was going on.  There are basically two people from that stay that I am incredibly upset with, but by and large I was impressed with almost everyone we saw last week.

When the hospital called to ask how the stay was I gave them five names when they asked for people who had gone above and beyond.

Still, going back to the ER was the very last thing I wanted to do, ever again.

On Wednesday I was at the lake with the four other kids while Maggie was in therapy.  I'm not quite brave enough to bring all five of them together.  I took Maggie last weekend and we had a blast, and while I'd only planned on taking the other four kids to the splash pad, we ended up down in the lake with three enormous popsicles the kids had somehow convinced me to buy (Tessie thankfully isn't quite big enough to demand her own popsicle yet).

This bit of awesomeness is from my Google albums app.  It made it and then asked me if I wanted to save it and
and I was like "of course, this reminds me of those horrible glamor shots from the eighties
but worse."  And since I was looking for a lake picture here it is for your viewing pleasure.
So no one panics, nothing happened at the lake.
We were headed up to the playground to give everyone a chance to dry off before getting into the car when we heard from one of Maggie's all time favorite therapists.  She was calling to let me know that during the middle of a session Maggie had started giggling and then had stopped responding while her eyes darted back and forth in her head for close to half a minute.

Maggie seemed fine now, a little tired and slower at doing her work, but they'd just wanted to let me know what was going on.

My phone went dead less than a minute later, and so we scrambled back to the car and plugged it into a charger and waited for it to turn on so that I could call her pediatrician's office.  I left a message on the nurse line and hung up, turning the car towards the therapy center since Maggie's day was almost over anyways.


The nurse called me three minutes later.  My favorite nurse. The one who suggested that Tessie had apnea a full three months before anyone else even suggested the correct diagnosis.  She began by telling me that if there was ever an emergency to call the front desk and ask to be put through to the nurse since it could have been an hour between anyone checking the messages.  "Is this an emergency?"  I said.  Honestly after the last week I wasn't sure at all what counted any more.

She asked a few questions and said she'd call back shortly after talking to the doctor.  A few minutes later she'd kept her promise and I had my instructions.  As a one time thing the nystagmus wasn't that concerning.  If it happened again she needed to go straight to the ER.

I needed to call her neurologist, which I'd already done, and leave a message there.  I explained that I had, but that I'd called them too because they called back days before neurology did.

We watched her carefully all afternoon and evening until she went to bed.



And honestly when Sadie called me and said "Mom you need to see this" I was thinking "what did she get into" and not that something had happened.  When I saw the dark dots on the carpet I didn't think blood.  I tried to figure out if she'd somehow smuggled a chocolate bar into her room.

Then I saw her face, covered in blood, with blood dried in her hair.  She'd obviously had a bloody nose.

Now without what had happened the previous day this wouldn't have worried me.  Kids get bloody noses.  Maggie has had exactly one in her life, when she and the hound dog bumped faces and their noses hit.  This was the first one, without apparent cause.

Following what had happened the day before I was slightly panicked when I picked up the phone and called her pediatrician's emergency line.  Waiting twenty minutes until the office opened just didn't seem like a good idea.

I winced when the answering staff told me which doctor was on call.  It was Patch's old doctor, the one who told me that Patch couldn't have allergies (when he did) because babies can't have allergies.

He called back and told me that it was highly unlikely that the two events were in any way related, and told me how to care for a bloody nose.  Then he said that if I hadn't spoken with her neurologist by night time to call back, and that if an episode like yesterday happened again, to go straight to the ER.


So we took her to therapy.  I felt safer with her there, with eyes on her at all time, than I would have if she was running around at home.

I called the neurologist's office and using the suggestion the nurse from the other office gave me asked to speak to a nurse or resident instead of being put through to the answering machine I'd left a message on the day before.

The neurology nurse thought that it sounded like she'd had a seizure the previous day, and a seizure during the night.  He couldn't say for certain, because her last EEG had been normal, but he'd be passing the information on to the doctor immediately.

We were at the gym, where the kids go to a play area they call "baby school," when the call from her neurologist came.  He went over everything that had happened, ordered an EEG, and told me to take her to the hospital if it happened again.  If it happened again he would have her admitted for an emergency EEG.

During the conversation I discovered that he hadn't heard that Tessie had been admitted to the hospital per his letter, and I begged him to pull her chart and look at the half dozen abnormal results that I'd received from the lab since she'd been home.

It was after lunch time when I heard that Maggie had had another twenty seconds of being totally unresponsive.  She's been sluggish all day long, but during this span of time she just stared off into space and couldn't be snapped out of it.

I called the neurology office back.  The nystagmus hadn't occurred, but she had been totally unresponsive.  Take her to the ER they said.


So we went.  Paul was in court and after last week I wasn't about to ask him to take more time off.

Maggie's amazing therapist who was more than an hour away headed over to help me wrangle and I offered milk shakes to anyone who didn't act like a tornado while we were at the hospital.

We trudged into the ER, Maggie and James in the stroller, Tessie on my back, and Patch and Sadie leading the way.  I breathed a sigh of relief when we made it out of the crowded grown up ER into the pediatric ER.

We filed into triage and explained what had happened and then into a room where we told the ER doctor what was going on.  He called neurology.  He tried to get a hold of her doctor.  And he couldn't.

He did get a hold of his office partner.  The same one from last week.  Can you guess where this is going?  Because I did.  I was back in the room praying he got a hold of her doctor and not the other doctor.

The ER doctor came back into the room and explained that he had gotten ahold of my least favorite neurologist on the planet and that she was sending us home with a prescription for Diazepam, to be given if a seizure lasted over five minutes, with instructions to come back if we had to give it to her.

What if she had a shorter seizure?  I asked.  What if it was only two minutes?

Just write it down and make a note of it for the next appointment.  I was handed a paper that said to make an appointment with the office partner, and the words "that's never ever going to happen" slipped out of my lips.


"I wish they hadn't sent us in today." I told the ER doctor.  "Why send us here just to send us home."  To make sure she's acting normal, he explained.  I could have done that.  Anyone who knew her could have done that.

I called her therapist who was still on her way and told her the news, and that we were going to be headed home with the Dizepam.

When her neurologist retires we'll be going to Ann Arbor or Grand Rapids.  I will never willingly have a child seen by that other doctor after these two experiences.

So we went home with a child who'd likely had three seizures in the previous twenty four hours, feeling sick to my stomach as I filled her prescription.

And so now we wait and watch her.  Hopefully I hear from the office to schedule the EEG very, very soon.  Tessie has her follow up today, with Maggie's actual pediatrician, and I'm going to be filling her in and making a follow up appointment for Maggie there as well.  And adding Diazepam alongside the epi pens that come with us everywhere, while praying that I don't have to use it.

Thursday, June 15, 2017

Another Tessie Update

I am so, so tired right now.

Last Thursday I took this video about five minutes before Tessie's therapy session started:

video

A few moments after I took this she was excitedly crawling to the door and attempting to go through her therapist's bag to see what she had brought for the kids to play with.

It was field day for Sadie and Patrick, and the second to the last day of school, and I had about a hundred things on my mind when Tessie started to fall down.

She fell from standing.  Then she fell from sitting.  Then she fell from crawling.  Then sitting again.

Her therapist looked at me.  We were both thinking about the letter from the neurologist that I'd just shown her, the one that said that if Tessie began to show uncharacteristic clumsiness we were to take her straight to the hospital where she was to be admitted immediately for an EEG, along with another long list of tests.



"Let's watch her for a few more minutes," I said, silently praying that this wasn't it.  Not today, I said silently.  Paul's in court.  I needed to pick of Patch and Sadie, then rush over to get Maggie.  He doesn't even have his phone when he's in court. What on earth was I going to do?

She fell down to more times in the minute that followed, each time seeming suddenly exhausted as she pushed herself up.

Her therapist helped me wrangle the kids while I rushed around the house throwing my keys and sunglasses into my purse, before hustling everyone out the door.

As I pulled out of the driveway I called the pediatrician's office, realizing that I didn't know exactly where in the hospital I should go.  I had the letter.  Did I need to head to admitting?  No, they told me quickly.  Take her to the ER.



Half an hour later I was navigating valet parking at the ER.  Paul had gotten out of court early and was going to be able to pick up the kids.  I made sure I had the letter and lugged James and Tessie inside.

Tessie's geneticist and neurologist had assured me that if I brought the letter to the hospital it would be fast and easy to make everyone understand that she needed and EEG immediately.  It was neither.

It was an hour and a half before we saw a doctor.  She questioned whether the neurologist had really meant to have her admitted, despite the very clear wording in the letter.  "I'll just call neurology to make sure that's really what they meant." she said, after telling me that she had a daughter and that her daughter was clumsy at eleven months too.

By then Paul had come and gotten James, but I felt totally defeated and was desperately beginning to wish we hadn't come in.  The doctors had stressed the important of the test being done as soon as possible, but things crawled along.  Was there any point to doing it three or four of five hours after the event occurred?



A pediatrician from the hospital appeared just as a nurse poked her head in and told us that Tessie was being admitted for a 24 hour EEG.  They began the long process of going over her relatively long history.  Lab techs came in and took vial after vial of blood.  In addition to the tests the doctor had ordered they were rerunning all the newborn screening tests.

A relatively short while later we went up five floors to her room.

Nine and a half hours after we arrived, Tessie was finally hooked up to the EEG machine.

A steady stream of doctors, nurses, med students, and nursing students were in and out of the room.  They brought in a mat and toys, but Tessie was pretty obsessed with having a TV playing Dora above her bed.

The next day a doctor who I met during our last hospital stay came in and talked with me about a concern that she had.  She felt that Tessie's symptoms fit with a certain condition.  It was very rare, she explained.  One in a million.  Diagnosis would involve a spinal tap.

She spent quite a while explaining why it would be necessary and how it would be done.  I was hesitant, hoping we could avoid it.  And then the neurologist arrived.


It wasn't Tessie's doctor.  He's not yet retired, but he has the other pediatric neurologist do all of the hospital work and he only works out of his office now.  I had never met this doctor.

She came in and briefly examined Tessie.  Then she began to explain to me that babies are clumsy because their brains aren't developed and this baby was perfectly fine.  She instructed the nurses to stop the test, unhook her, and send her home. It was only half done.  

Honestly I could hardly speak.  If you've seen the episodes they clearly aren't normal.  And afterwards she falls asleep and has apnea after apnea.  The first time it happened she had ten in the next hour.

The other doctors paged Tessie's geneticist over and over again.  She was the other person who wanted tests done.  She had requested the neurologist write the letter to begin with.  She could stop the discharge.  But she was already gone for the weekend.

Later when I talked to her on Monday morning, she repeated that the behavior absolutely isn't normal, and she doesn't understand how the other doctor could say it wasn't a seizure when they haven't come near getting an episode on the EEG.  She also wasn't sure how she could disregard the fact that it usually comes immediately before more central apneas.



But she has no ideas left about what it could be, mostly because Tessie's body stays rigid when she falls instead of going limp.  It looks like someone has come up and knocked her over, over and over again, but no one is there.

She asked that I capture one of the episodes on video and if it's alright with me (it is) she'll show it to every doctor she thinks can help to brainstorm ideas.

The clumsiness episodes only happen every couple weeks, however, and honestly when she starts falling over hard the way she does during them my first instinct isn't to reach for the camera.  I am not looking forward to trying to capture it, although I'm certainly going to try.

But what I'm really hoping is that it doesn't happen again.

The apneas continue to decrease.  Honestly I just want her to outgrow it, now, a few weeks before her first birthday.

This, however, is only half of the story.  Because today we were back in the ER (per our doctor's instructions).  And not for Tessie.  But that's a story for another day.  Because this week has finally caught up with me and sleep is going to overtake me before I can finish writing everything I meant to write tonight.

Prayers for Tessie and Maggie are hugely appreciated.  And that the rest of this week goes so smoothly it makes up for the craziness of the last seven days.

Tuesday, May 30, 2017

The Best Answer: A Tessie Update

I ended up rambling through all the questions we still have, but if you want to skip it and get straight to the main point of this post, the whole of the very, very good news we got today is in the first three paragraphs.


I was just about to get into the car this morning, at a few minutes after seven a.m. when my cell phone rang.  I thought that it was Maggie calling on her GPS from her car seat directly behind my seat, but when I looked down it I saw a number I didn't recognize.

When I heard Tessie's geneticist's voice, I froze.  We haven't had enough experience with her to know what sort of a doctor she is.  Does she only call for very bad things, while a nurse calls with the good news/normal results?  That's how the majority of Tessie's doctors are and the next ten seconds felt like hours until I heard her say that the test results were normal and that they did not show a mutation on the PHOX2B gene.

I was elated.  Paul had no idea why I was giving him a thumbs up from where he sat in his own car, and I'm sure I was grinning ridiculously with relief.

But then I had questions.  And things that I'd been mentally filing away, that I needed to tell her.



Amazingly, she took a half hour to talk with me and go over everything that's happened recently.  I told her about how Tessie had a rough week last week and had a hard time sustaining her oxygen levels at night while she was sick.

And I explained that I've noticed that she has apnea nights and then there are the nights when she has low oxygen saturation levels without apneas, where the monitor says that she's breathing faster than normal, and that her heart is racing but that her oxygen levels are falling, going up when she wakes up and then back down as soon as she goes to sleep.



Lastly I finally remembered to tell her how we've noticed that Tessie gets really, really clumsy right before she starts having apneas.  The first time I really noticed it was when we were in a baby play area at a museum.  She was sitting up and kept falling over, despite being really good at sitting at that point.  When we got in the car she immediately fell asleep and had apnea after apnea for the next hour until we were finally home and out of the car.

It's become predictable now.  If she's clumsy or very, very tired, she's going to have a bad night.  If she misses a nap, she's probably going to have a bad night.  If she misses both naps, the alarm is going to be going off over and over again.

I've given this description to three of her doctor's now.  When I told her neurologist he gave me an order for an organic urine test to hopefully eliminate something called intermittent maple syrup disease.  The pediatrician thought it sounded like mitochondrial disease.

Her geneticist said that she hadn't heard anything that pointed to mitochondrial disease at this point, but that we need to find a way to do an EEG immediately after the clumsy episodes start to see if she's having seizures.  She said that she felt like we were actually incredibly fortunate because the clumsiness is such a good indicator beforehand to help us pinpoint when to do the test.

Falling asleep in the middle of playing in the play room.
That it's a good indicator is kind of true and kind of not, as the organic acid lab slip has proven to me.  Since I got that test I've waited to take her in, waited for a moment that is indisputably clumsy.  If she falls over is it because she's learning to stand, or is it the clumsiness before a bad night?  If she topples over twice is it a coincidence?  I've been so afraid that I'm going to pick the wrong moment, the wrong bout of clumsiness, and as a result miss something important.

She asked me to call the neurologist and see if I can arrange it so that the next time Tessie has a clumsy episode she can be admitted to the hospital for an immediate EEG.  I left a message at the neurology office relaying the suggestion.  They aren't particularly speedy at returning their calls though, so it could be a while before I hear back.

Even with the additional questions that are unanswered, this was the best possible news.  We've now eliminated heart problems, a brain stem problem, and CCHS as the causes of her central apnea. When she was in the PICU those were the three explanations that were the most terrifying.  The apneas have already decreased hugely from where we started.  Unlike with the MRI, where this test was still hanging over our heads, I actually do feel relieved.



Thank you for all the prayers.  I am so incredibly grateful to be able to share this news.  After five months of worrying about this particular cause, we can finally put this most frightening of questions to rest.

Saturday, May 27, 2017

A Tessie Cold

Last week Tessie had a cold.


It wasn't a bad cold.  She didn't have a fever.  She'd have a few coughing fits a day, but they weren't bad and her nose was runny but not particularly stuffy.  She could suck on her thumb and still breath.

The first night the alarm went off, telling me that he oxygen level was below 89%.  I looked down and saw the red light on the right hand side over the falling number and picked her up.  She woke up and started to nurse and the alarm went off.  As she drifted off to sleep I put her back in her bed.  Within minutes the alarm went off again.

It happened a few times before I took the sensor off and got out a new one.  As soon as she fell asleep it happened again.  She had little coughing fits almost immediately after the alarm would sound.  When she'd finally drift off I could see that she was breathing a little fast, 31 respirations per minute, but not as fast as it sometimes is.

After a long night I figured that it was probably a fluke.  She has bad nights now and then, but they're less and less frequent.  If she has one bad night it's likely she'll go a week, or even two now, before she has another.  And it wasn't like she was having apneas.  She hadn't stopped breathing once.


The next night came and exactly the same thing happened.  This time I looked at her closely.  The oxygen monitor said her oxygen was in the 70s, but she wasn't purple or blue, which her pulmonologist had said she should be if her levels were really that low.  Again it went back up when she nursed and then began to go off over and over again when she'd go to sleep.

And then the night after that we repeated it for a third time.  I knew then that I needed to call the doctor.

We had an unusually busy day lined up.  Dropping off Sadie and Patch.  Speech and OT and then rushing Maggie over to her therapy place.  A couple errands and then picking up Patch and hurrying to a doctor's appointment.  As soon as that was over we were supposed to pick up Maggie and drive her back to next year's potential school for the second half of a speech evaluation.  That left us just enough time to get back to pick Sadie up when her school got out.

That meant that if her doctor wanted to see her it would likely be in the afternoon, and I would have all five kids.  Paul had court, so I was on my own.

And which doctor should I call?  I knew there was a good chance that the pediatrician would say "sorry call her pulmonologist."  I didn't have time to drive two hours each way to the pulmonologist's office.  Beside's wasn't this a cold?  Hardly worthy a trip to a specialist.  


I silently hoped that her pediatrician's nurses line wouldn't tell me to call the pulmonologist and I left a message explaining what was going on.

And they called back and said to bring her in at 3:45 for a 4 o'clock appointment.

Thankfully Paul got out of court early and was able to arrive at 3:44.  We hurried inside.

The pediatrician examined her and made sure that she didn't have pneumonia.  Her lungs sounded great.

And then he explained that while the sleep studies say that she only has central apnea, he suspects that there's more to it than that.  He thought that for whatever reason she didn't have the energy to breath because of the cold, so that even though she was just a little sick it was causing her to repeatedly stop breathing or breath too shallowly.


I asked if that would explain why she has more apneas when she's in the car, and he said that the position in the car seat makes breathing more difficult and that it was basically the same idea, that for whatever reason (he suggested mitochondrial disease again) when it's more difficult to breath she just doesn't.

I have noticed that on days when she's especially tired (like if she skips a nap) we're much, much more likely to have apneas all night long.  If she's well rested she usually sleeps soundly all night without a problem.


She's almost completely better and the last two nights she's slept peacefully without a problem.  But I'll admit I'm far more nervous about her getting sick now, if this tiny cold affected her so dramatically.

But at the moment she's back to bouncing off the walls.  Tonight she put her face in the water in her bath (on purpose) three times, and then laughed about how daring she was being.  And she's growing so fast!  Here's a glimpse of our big girl going on the swings today for the first time:

video

Wednesday, May 24, 2017

Molly Loves You and Other Amazing Words

Sunday night, Maggie had already gone to bed when Sadie's bedtime rolled around, but she hadn't quite fallen asleep yet.  She was wrapped up in a quilt when she looked at me and said "Molly loves you."

Molly is her favorite Bubble Guppy and "Molly loves you" is something she's begun saying that I've suspected for the past month or two is the equivalent to her saying "I love you."

"Mommy loves Molly!  Mommy loves Maggie!"  I said back as Sadie climbed into her bed.

Then Maggie paused, looked at me, and in a clear little voice said "I love you."  



It isn't the very first time she's said it, but it's one of the first time she's said it when she hasn't been echoing back the exact words that she's heard.  When she says "love you" when she goes to school she's basically saying "please go mom."  

There have been a few times, over the years, that she's echoed back, "I love you" after I've said it too. But this was the first time that she initiated saying it on her own instead of repeating it, which made it one of those super memorable moments that I want to store away in my memory exactly as it was.

Tuesday, May 23, 2017

Finally Family Fun Night


For most of the last decade, Paul was gone on Friday and Saturday nights.  Before Sadie was born he worked 48 and 72 hour shifts at a group home, which meant sometimes parts of weekends were free, but often times he was gone.

After that he began grad school, with a program that took him almost 300 miles away on weekends (besides working nights during the week).

Then law school began and between studying in the law library, and then working as a doorman the last two years of school on just about every weekend, he was hardly ever home on Friday or Saturday nights.  This last year, when he started his own business he kept working as a doorman on weekends.

I was pretty elated when he got the new job and I discovered that for the most part, on Friday nights, Paul will be home.



And so I finally declared Friday "Family Fun Night" and began planning.


The nights usually include a meal I know they'll like.  When I'm feeling really energetic I plan something that the kids can help make, like pizzas that they can decorate, or banana floats that they can help build.


 On other nights (like kebab night) everyone else was out in the living room while I threw everything together and brought it out.


Banana Split night, barely beat out Root Beer Float night as the kids' favorite.

It was unique in that instead of being dessert, the banana splits were dinner.  It only happens once, or maybe twice a year, but it's definitely a memorable night for everyone.  And it was fun to see which toppings everyone picked for their creation.


Every Family Fun Night so far has ended with a movie downstairs in the playroom, but some have included games too.  Like this wiggly worm ringtoss (it can be a challenge to find games all the kids can play):


Family Fun movie time has convinced me that it would be very, very nice to have a sectional down in the basement.  Because right now there's a huge amount of competition for the "best" spot on the couch.  And on the floor.


And I don't think I've ever been more grateful for Pinterest for ideas, even if our nights aren't quite Pinterest worthy in and of themselves.  They are definitely fun.