Sunday, November 19, 2017

Tessie News

I promise that one of these days I'm going to write about something else.  I was meaning to write all week, had blog post ideas flitting through my head, but I'm on day eight of a hundred plus fever and I've been falling asleep as soon as the kids are in bed each night.

I've even given up on NaNoWriMo this year, as mini disaster after disaster have kept me from writing until I've decided it's just not in the cards for 2016.

We had another scary night with Tessie.  It started with an alarm going off and a floppy baby and momentary terror that had my heart in my throat and was followed by a dozen more apnea alarms before morning, but this time I realized in early morning that the light that signaled a too slow heartbeat was also bright red and glowing.  And that is how I found myself on the phone again with the pulmonology office, the after hours line this time, in the early early morning.


It can be a delicate balance.  She has central apnea.  That means her brain stops telling her to breath.  That's why she has a monitor.  If I called every time she had a dozen apneas in a night I'd have called a lot.  Every night when she was tinier.  And the "is this important enough to call" can feel complicated.  Sometimes, as we've been on this journey with her, tiny things are actually huge and things that feel huge aren't important at all.

The person who was on call was in her car when she called back and explained that as a result she couldn't see Tessie's file, but after a moments conversation she announced that she knew exactly who Tessie was, because there had been some conversation in the office about the results of the second sleep study.  

Now for those who is new here, two sleep studies ago Tessie only had 15 central apneas, which was no enough for her insurance to continue to pay for her monitor.  I fought this, because she's had instances, like the one the other night, where she's stopped breathing after having next to no apneas for a month beforehand, and had to be turned onto her back and had her chest rubbed hard until she gasped and started breathing again.


I spoke with a nurse twice and was told they would not be budging on this, it was policy that when there were less than five episodes an hour the monitor went back to the medical supply company, and than Paul spoke with one of the pulmonologists and was told the same thing.  We finally took her in to see her pediatrician and he called and fought for her to keep the monitor and they ordered another sleep study, saying that if this one is normal we'll know with 99.99999% certainty that she is fine.

I will admit that I felt like I was being humored.  And what were the chances that she would have a bad night?  They were terrifying, but also few and far between.  

But she did.  She had multiple instances of hypoxia, which earned her the right to keep her monitor for another six months, and resulted in the delivery of a giant oxygen machine that gurgles happily in the center of the room all night long.

The On Call knew who Tessie was because there had been a conversation in the office about her case when the results of the seconds sleep study came back, about "mother's intuition" and how unlikely it was that I had persisted in pushing for more tests.  She said the talk in the office had been that "if that baby had been with another family, it could have been..." her voice trailed off and she left the rest unsaid.  


It could have been very, very bad, my mind completed the sentence.  

Two nights ago, Paul had gotten to her before I did, he was maybe three steps ahead of me, and he shook her shoulder and she had flopped back and forth still, soundly asleep and for a split second, before I realized that the heart monitor was still showing a steady green light, I was terrified.

I thought that we'd lost her.  Then I saw her chest moving steadily up and down again and I couldn't stop shaking.  

If she hadn't had her monitor then, would she have been all right?  

Still the sleep study and hypoxias have bought us six months with her apnea monitor and maybe in six months she really will have outgrown it.

If she's going to outgrow it.  

No one can tell me if she'll outgrow it because we still have no idea why it's happening.

Or maybe I'm going to be holding my breath every six months, forever.


There is a tiny sliver of good news in all this though.  

Tessie has had weekly therapy sessions since her developmental delay became so glaringly obvious when she was between one and three months of age (at three months she was missing virtually all of her one month milestones).  

Her last evaluation was about a month ago.  Her results came back showing some big strengths.  She scored a 12.5 out of a cutoff of 7 for intelligence.  Her gross and fine motor skills were similarly strong. But she was way below the line in social communication and initiative, giving her a 40% delay in those areas.  Which is... not insignificant.  

However after five days on oxygen she was vocalizing way more than she usually does and was making a little bit of eye contact and definitely using her voice (in whines mostly) to let us know when she wanted something.  Usually she doesn't do that and doesn't let anyone know when she needs something, so that was extremely encouraging.  

Her pediatrician is planning on sending her for an autism evaluation in a month and a half when she if officially eighteen months old.

On Wednesday we were at the older kids' gymnastics classes and she fell asleep on me for the third time in her life (if I'm counting correctly).  She loves to snuggle but it's almost impossible for her to be still against me.  Usually when she's tired she wants to be in her bed by herself and she quietly falls asleep.  Which is how she has been since the day that she was born.

So I loved every moment of her sleeping quietly against my chest.


And in other news, she was able to have a equine therapy session alongside Maggie yesterday, which was hilarious to watch.  At one point she was riding along and I could see her bouncing up and down on the saddle happily as she went past.


So we wait and pray and cuddle our hilarious and strong little bunny.

We are so lucky to have her.  

Friday, November 10, 2017

Roller Coaster Weeks

I'm laying in bed listening to the hum of the oxygen machine that arrived earlier today, feeling thankful that I shouldn't have to tell anyone that they can pry Tessie's breathing monitor out of my cold dead hands, for at least three to six more months.



The last month has been a roller coaster of sorts.

It began the first week of October when Tessie went in for a sleep study.  

During the sleep study she had 15 central apneas.  For anyone who's new here, that means that fifteen times her brain stopped telling her to breath for more than twenty seconds. 

But fifteen apneas, with desats that only went down to 88 was not enough, according to the insurance for her to keep her monitor.  

The nurse who called told me this in a cheerful voice.  It was great news.  I should be excited.  No more plugging in cords and turning on machines.  

She did not expect the sheer panic of my response.  I told her this story.  I told her how she had stopped breathing twice during the summer, after weeks and weeks without an incident, and how I'd had to turn her over and rub her chest to get her to breath again.  

I told her I was terrified to lose that monitor.  

She said she'd call me back.



Another nurse called me a few hours later.  She'd talked to the doctor and the doctor was clear.  Tessie didn't need a monitor anymore.  It was standard protocol for a baby with only 15 apneas a night.  Most babies, she explained, were off the monitor at six months.

This baby was diagnosed with severe central apnea at six months, I said.  

In the following days we begged and pleaded and argued.  Don't call the monitor company.  Give us time.  Let the insurance deny it.  Let us fight the insurance over it. Her neurologist agrees she needs to be on it still. Paul called several times and the pulmonologist made it clear: this was protocol and nothing could be done.

I was frantically making calls and leaving messages, first on Tessie's neurologist's nurse line and then with her pediatrician.  The nurse at the pediatrician's office called back twice, and the second time we spoke she suggested I bring her in and talk to the doctor in person.  

I kept missing the pulmonologist's calls while running around getting the other kids to their schools, and therapies, and activities, and I still hadn't spoken with her two days later when I went in to see Tessie's doctor.  

I had dodged several calls from the medical supply company asking when they could pick up the monitor.  

I went in to see how much apnea monitors cost and I sat in the office sobbing when they told me that her monitor was $10k and that it was billed as a service (unlike some machines where insurance payments can ultimately lead to the patient owning the machine).  They wouldn't take it away, they assured me.  I would just have to pay for it.  And the quote put it very much out of reach.

I went in to the appointment feeling hopeless, but also determined that I was going to make every possible appeal to keep the little monitor that beeps when she stops breathing for more than twenty seconds.  

Her doctor called the pulmonologist twice while we were the office and we sat in the exam room and waited for the pulmonologist to call back.  We talked about my fears.  He said that the pulmonology nurse had told him that they weren't worried about Tessie because once a baby who had central apnea as a result of prematurity is down to 15 apneas a night, the apnea is resolving and isn't a problem anymore.  

"But we don't know that she has apnea as a result of prematurity." I said quickly, quoting his own words back to him.  At every appointment, with every specialist and doctor she would see I would always ask "is it going away" and they would always say the same thing and now those words came rushing back to me. "She was 8 lbs 12 oz and full term and I keep asking every doctor she sees if they think it's neurological immaturity and if it will go away eventually and everyone tells me the same thing: we just don't know."  

"We're on the same team here," her doctor assured me.  And he promised to call when the pulmonologist called him back.  

He did.  And in the two minute conversation he had with her pulmonologist he had more information than I'd gained in months of appointments.  

The pulmonologist had said that when apneas decreased to the frequency that Tessie's were at they were going away when they were caused by prematurity.  Her pediatrician had asked if her apneas were caused by prematurity.  We don't really know, the other doctor said.  We don't know for sure that this doesn't have something to do with the brain hemorrhage that she had.

I nearly fell over.  



I'd been asking the same question for months and had been told over and over again absolutely not.  It couldn't be the brain hemorrhage because it "wasn't clinically significant."  

Maybe the two were entirely unrelated but as a layperson it certainly felt suspicious.  Not that it would make a difference. Tessie's brain hemorrhage very likely happened before she was born and it is what it is.  

He told me that he was going to write a prescription for a monitor and that the pulmonologist had agreed to order another sleep study. 

"Her pulmonologist says that if this one is normal than it's a 99.999999% chance that there's nothing there to find."  

I thanked him and hung up the phone.  



Earlier this week, before we made it to her sleep study which had been scheduled for this Saturday, it happened again.  Tessie's alarm went off seven times in a fifteen minute span.  Five of those times she started breathing again on her own.  Twice she didn't.  This time I didn't have to flip her over.  I just had to rub her back hard until she gasped and shifted herself around and went back to breathing deeply as she dreamed.  

"Don't hesitate to take her to the ER," the pulmonology office told me.  "But I do," I explained.  "Because we've been to the ER for this.  For not breathing.  For seizures.  And yes they're terrifying when they happen.  But then she wakes up, and she looks fine and I take her in and they look at her and say 'why on earth did you bring this perfectly healthy baby to the ER.'  So I do hesitate."

They bumped us up to Thursday.

So I worried my way up to last night when we went in for the sleep study and Tessie tossed and turned and fussed and complained about the nasal cannula.  And I stared at her half the night and listened to her perfectly regular breathing and I knew, I just knew, that she had had a spectacularly uneventful night.  I didn't even hear a single apnea this time.  

She had already had one of her rare scary monthly events.  And we'd already met our monthly quota.  

They hadn't seen what I needed them to see.  



I was folding laundry at home when the pulmonology office called.  To tell me that she was perfectly fine and didn't need a monitor, I thought.  

Instead the nurse delivered news I honestly had not expected.  

Tessie had had central apneas.  She'd had desats down to 82%.  She needed to be on oxygen at night.  The medical supply company would be delivering it immediately.  They'd already sent the order in.  

They would order another sleep study in three to six months, she said. 

Six, I thought.  I'm going to be pushing for six, and not just because sleep studies are pure torture with a toddler.  

And for the moment, I am relieved, because for now if she stops breathing an alarm will sound and I'll know about it.  

Hopefully in six months she really won't need it.  And if someday she really doesn't need all these wires and tubes, I will be ecstatic.  I will be overjoyed.  

But until that day I will be holding onto that monitor with every bit of energy left in my body so that I know when she isn't breathing, so that I can help her start again. 

With the help of a 1/2 liter per minute of oxygen, even if Tessie does firmly believe that nasal cannulas are the worst invention ever made.

  




Monday, September 25, 2017

Tessie, Cuteness, and a Waffle

While we were rushing out the door to go to Mass yesterday morning I glanced over and saw Tessie excitedly grab a waffle and I just had to capture the cuteness:





Who knew that eating a waffle could be so cute?

Sunday, September 24, 2017

Fours Years Ago Today: A Diagnosis

Facebook tells me that four years ago today Maggie was diagnosed with autism.


I didn't go into the doctor's appointment, a few weeks prior to that day expecting anything of the sort.  We were there for tummy problems that just wouldn't go away.

The resident came in and spent forty five minutes with us while Maggie bounced off the walls and played with her stethoscope.  She said it was unbreakable until Maggie snapped part of it off and handed it to her.  She was awesome with Maggie.  And then she looked at me and said "I am one hundred percent certain that she is on the autism spectrum." and somehow I didn't fall out of my chair.

I didn't know anything about autism aside from stereotypes.  But the stereotypes told me that it was one of the scariest things that I could have imagined coming out of that doctor's mouth.

She gave me some papers and some numbers to call.



I went home and called the line to have her evaluated and went to the library the next day and checked out a stack of books and made a list of behaviors that the books told me were red flags.

When the woman doing the initial interview asked why I was concerned I opened my notebook and had an entire page of teeny tiny words printed in neat lines of things that she did that the books told me were not "normal" for a three year old.

I didn't give myself much time to be scared though.  Not really.    As with Tessie's central apnea, my response to stress seems to be throwing myself into learning everything I could, and reaching out to anyone who might be able to teach me how to help her.

A lot of people told me that everything was really the same and that nothing had changed in the days following the diagnosis, because she was the same happy, beautiful little girl.

And that she was the same little girl was true.


But our lives were also about to change drastically in ways that would have been scary to me then.  The neat little homeschool family picture that I'd had in my mind since before Sadie was born was about to disappear.

In the two years that followed I would sit in thousands of hours of therapy sessions and our carefree schedule would become much more structured.

I didn't know that what was coming next was going to better, because it was the best thing for us, the future that worked and benefited my children and family, instead of being some bright pretty photogenically blog-worthy dream that I had imagined.

On this anniversary of sorts I've been sitting her and looking back over my fears back then, and the reality that is our lives today and how different they are from one another.  This, what we have now, is better than anything I imagined.

And the question "what would I tell a family standing where we were four years ago, afraid and uncertain and wondering what would come next?" keeps popping up in my mind.  What would I have told myself if I could go back and write a letter to the me of 2013?


I would say that knowing is better than not knowing because once you know you can get her the help that she needs that will give her the tools to communicate and learn and grow.  Once you know you can learn how to communicate with her and it will be the best thing ever.

I would also tell myself that now is not tomorrow and is definitely not a year from now.  I have had so many parents tell me "I have a two year old who has non-verbal autism."

Having a two year old who doesn't speak, with or without autism, doesn't mean you're going to have a child who can't speak in a year, or three years, or five years.  Having a four year old who doesn't have any meaningful language doesn't really mean that either.

And that is probably one of the most important things that having this amazing kid has taught me.

Especially when our kid is little, we only know what our kid is like right now.  We don't know what next week is going to be like or next year.  And we definitely don't know what three years from now holds.  You don't know if you're kid is going to require care for life, or if they'll be a professor at MIT or if they fall somewhere in between.  At least not when they're still tiny.



Even now, as a mom to an amazing seven year old, I have no idea what comes next.  Will she end up testing security systems for the government or some corporation (because let's face it, she has major natural talent in that area)?  Or will we still be watching Bubble Guppies on TV and eating popcorn on Family Movie Night in twenty years?  Either way, what matters the most is that I get to be the mom of this amazing, and often times surprising kid.

My favorite advice though, isn't really my own.  It was passed on to me by a mom who had a teenager on the spectrum.  She said that the best thing that I could do is go out and read the blogs and books and articles that were written by people on the spectrum.  There's a lot of scary stuff out there, she told me.  But the people who really know what it's like for your kid are other people who've been there.

And to this day I am grateful that I didn't get sucked into the vortex of pseudoscience and imagined causes and cures (at least I didn't get sucked too far in).  I'm glad I found voices that asked me to think about how I would feel if my mom talked about me the way some parents talk about their children on the spectrum.



Because a two year old who isn't verbal may someday be able to read the gallons of ink their parents have spilled talking about their neurology as if it's a fate worse than terminal cancer.

So here we are.  Four years out from those first tests when we began to learn more about our little mermaid and truly began to understand her.  Last week I got to sit with her while she did her work for the first time in two years.

There was a section of work called "irregular plural nouns" and I watched as she said "cactus, cacti, goose, geese, and child, children."  Then she glanced over at me and grinned hugely.  She is apparently far more articulate at school than at home and I had no idea how far her language had come, because at home we talk about... mermaids.  All day, every day.   I know that she has a very expansive vocabulary about all things ocean related.



I told the person working with her that I heard more words in the hour I was there than I had in the previous year and she was shocked because Maggie talks so much at school, but Maggie, Maggie was smiling.  As we walked to the car I said "I think you've been holding out on me." and there was more smiling.  And in the following days I've heard far more words and sentences than I had before.  She is so smart.

Where will we be next year?  I have no idea.

But I can't wait to find out.

Friday, September 22, 2017

The Calendar

This spring I ran across a chalkboard calendar at Hobby Lobby.

It was pretty much love at first sight.  

I'm an INTJ and planning is sort of my thing.  I used to have mountains of notebooks.  

Now I have my chalkboard (and a small mountain of notebooks, after all my plans aren't limited to meal planning and old habits die hard).  

When I lugged it home Paul laughed and predicted that May 2017 would still be scrawled across the top two years from now.  

I was immediately determined to prove him wrong.


And so far I have.

It helps me to have a calendar of this size right there taking up large part of one wall in the kitchen.  

When I make my shopping list each week I look at it and base the list on what I see.  And if I don't have time to complete the meal I have planned for the night I can glance over the rest of the week and know that we have groceries for everything else scheduled that week and make a quick switch.


Now the calendar isn't binding (the number two question I've been asked after "where did you find it?").  

When leftovers start adding up, I make changes, blot out entire nights and use food before it spoils, or grab something because I already have it  made that will be quicker and easier.  

But on those days when I'm exhausted and have absolutely no ideas bouncing around in my head, the calendar is a lifesaver.  


And I enjoy taking one evening a month to decorate it while I brainstorm meal ideas and search for "chalkboard art" on Pinterest.  


Last month, during another trip to Hobby Lobby I came across a second chalkboard and realized that apparently chalkboard calendar's are a major weakness of mine.  Luckily I had a coupon.  

Now it's become our weekly event planner, which was especially important the first couple weeks of school when we were easing into a new schedule.


Now I'm a little impatient for the changing of the month into October when I have even more fall chalkboard decorating ideas in mind!

7QT: 11 Year Anniversary Edition

-1-

You may have noticed that the blog recently underwent a makeover.  

I was bored one night after everyone was tucked in bed and I started out simply updating the photos on the old banner, then I decided it looked too busy and suddenly I was scrapping the entire look of the page and starting over.  

I started off making a banner that looks like this:


But then I decided that the neat, calm children just weren't a realistic reflection of my life.

So I started over.  The new banner is a bit more real.  And I like it that way:



-2-

School picture day arrived and I love the pictures that arrived a couple of weeks later:


In hopes of avoiding a repeat of last year, in which Patrick glowered at me, I didn't go to help with the preschool class.  And that worked out well for us:


Here's last years photo.  Which really could have been worse.  I'm sure that this was the least glaring of the many photos the photographer captured in an attempt to get a photo where he wasn't staring daggers at me:


-3-

Maggie was given an iPad for her birthday.  She gets to play for it a half hour before school, when we're between dropping off Patch and Sadie and walking out to meet her teacher.  

Watching her play on it is so much fun.  She loves the Toca Boca apps.  And watching her play is sometimes an amazing glimpse into her mind.  

My mom and Sadie and I had all played with the app a bit and had a really hard time figuring out how to do anything.  Maggie is an expert.  I watched her select a person in the hospital version of the game, grab a robe, slap it on the character, put them in the shower, take them out, and bandage their head.  

Other days she brings everyone out to the beach.  


And on my favorite days she styles everyones hair and dyes it pink.





-4-

7 years ago she took her first ballet class and while we weren't quite ready for the cut throat world of 3 year old ballet classes in Florida and didn't end up going the whole year, she has been in ballet every year since.  

And she still loves it:



-5-

James, who just this week has demanded to be called "Gekko" and "Linny" is currently only answering to "Baby Jaguar."  And now a photo dump of the cuteness: 






-6-

One of the things that I really appreciate about Maggie's school are the communication papers that  go back and forth telling me about her day.  Every day I send a form in about the previous night and that morning and every afternoon I get a form back from the teacher with notes about her day.  

But my favorite part are the pages that she fills out herself.  

And how she always tries to write that she went swimming:


This was one of her earlier pages the first week of the school.  She definitely lets me know how she feels:



-7-

Twelve years ago today Paul and I went on our first date.  Eleven years ago today we were married!  

Time flies!






For more Quick Takes head on over to This Ain't the Lyceum!  

Thursday, September 21, 2017

Tessie Alert: An Update of Sorts

Every time I think about writing a Tessie update, Maggie's sweet voice singing "Tessie alert!" from just behind me in the backseat of the car goes through my mind.

It's from the driving app that I use, and it asked me at some point if I wanted to add a baby reminder when I arrived at each location.  At the time I thought "why not?" and when it asked what I wanted it to say I quickly typed in "Tessie alert!"  

So now, when the app and alerts are turned on and I arrive at wherever I'm going, it says "Tessie alert!" which Maggie decided to turn into a script.  

She says it now and then when we've stopped the car, but also while we're eating dinner, or when she's walking by Tessie in the living room.  

It probably doesn't quite fit the rest of the post, but it seemed as good a place as any to start before launching into the knowns and unknowns of which there are more of the later than the former.

I needed to ease into this post.


Tessie is growing and learning.  A week from tomorrow she'll be fifteen months old.  She is a great walker, and actually ran across the room today to dart onto the front porch when her therapist was leaving so that she could play in the sandbox.  

99% of the time she looks and seems and as far as I can tell is perfectly healthy.  

There's just the tiny sliver of a percentage of the time when what's going on with her still scares me.  



Her central apneas are almost completely gone.  This summer I thought that they were finally gone.  

We were past it.  

It had been almost two months since the alarm had gone off for anything other than a detached cord.  

Then one night in July, the alarm started to go off.  I was getting the boys to bed.  I got up and walked into the room, but I wasn't hurrying.  I fully expected her to be standing there, at the edge of the playpen, looking at me, having pulled a wire off of her chest strap.  This happened several times a week and it hadn't been a real episode in so long.  

She'd become such an expert at removing her oxygen sensor I'd stopped putting it on.  What was the point when she'd have it off in five second flat?  So the respirations per minute and heart rate monitors were all that was left.  

Tessie during a study in Boston.  This cap is pretty much one of the best things ever
and I really hope it's approved for clinical use because it would make EEGs for kids like Maggie
so much easier.
But she was asleep.  Well, I thought, she still sometimes pulls wires out when she's asleep.  I glanced at the monitor.  It wasn't reading as unplugged.  I looked at her and realized that this was real, she wasn't breathing, and hadn't been breathing for twenty second when the alarm first started sounding.  

I rubbed her back hard and she took a breath.  Two breaths while I ran by hand back and forth across her back.  I stopped and stood and stared at the numbers on the monitor.  The respirations per minute went up for a moment then started to plummet again.  

I looked back at her and her back was perfectly still.  As the monitor read zero I turned her over and rubbed her chest and she took a big breath and then another and another. She had started to breath on her own.

The alarm went off a few more times in the following hour, but I stayed close by, and directed a fan towards her and finally whatever episode had begun ended and for another month everything was fine until, just as I started to relax and think maybe she'd outgrown it, it happened again.  

Now once, not that long ago, this would have sent us running to the ER.  But when you have a baby that was stopping breathing 45 plus times a night, with the alarm going off all night long, it was a big deal that she needed so much stimulation to start breathing again, but not so out of the ordinary that I thought we should go in.  

This was not all that long after being sent home after Maggie's seizures, and I'd been asked plenty of times by doctors if she ever didn't start breathing again on her own, and I'd said yes, and they'd nod and make a note, and that was that.  No one acted like it was that abnormal considering her diagnosis.


At Tessie's last doctor's appointment though, I mentioned what had happened and she paused and asked if I had called the pulmonologist.  I explained that I hadn't, because she hadn't seemed to think it was a big deal when I'd mentioned it before, but her primary care doctor did think it was sort of a big deal, and she had me call and the new plan of action was to go straight to the ER if it ever happened again.  Thankfully it hasn't.  

It's been a month.  

But lest I relax too much we had the scare of two and a half weeks ago.  

We'd had a long day.  It was the first week of school for Maggie, and her first full day.  We'd been picking up and dropping off the big kids, playing at parks, and running Maggie to therapy and Sadie and Patch to gymnastics and by the time all of that was through Tessie was exhausted.

She fell asleep in the back of the car.  


When we got home I was about to unload Tessie when I saw that she was asleep.  So instead I grabbed a bag and started pushing the pieces of school uniforms that had been discarded in the car between school and gymnastics into it so I could take them in and wash them.  When I straightened up and reached for Tessie I froze.  

Her head was moving back and forth rapidly, almost like a very fast, very intense tremor, and her eyes were moving back and forth in her head.  Before I could get her out of her car seat it was over.  By the time I got her to the house she was babbling.  

I called the neurologist in the morning and the doctor who sent us home from the hospital last time called back.  After listening to my description she said that it sounded very much like a type of seizure that occurs upon waking and that I needed to get it on video.  Which has led to some very cute videos of Tessie waking up, as I pull out my phone before I try to wake her, but thankfully no more seizures.  

If I never have a chance to get that on video I will be perfectly happy if it means it never, ever happens again.


Unfortunately the last little scare was just last week.  It seemed small enough.  But it almost landed her back in the hospital.  

Tessie had to work really, really hard to figure out how to drink out of a cup.  And we bought just about every kind of cup on the market before we found one, a sippie cup, that she finally figured out how to drink out of.  

Okay I actually do need to back up.  Earlier this year, shortly after Tessie's birthday, she narrowly avoided having to go back to the hospital because she couldn't figure out how to drink out of a cup and nursing was no longer enough to keep her hydrated.  

But she finally figured it out and within an hour of a doctor who knew her from past appointments telling me to bring her in, after I mentioned her unusual heart rate to him during Maggie's EEG (and that while her pediatrician wasn't worried it just seemed odd because it was staying well over 150 beats per minute while she was asleep, and had been for a week) and he pretty quickly asked about fluids and said we need to bring her in ASAP (she'd had less wet diapers but was still having 2-3 a day).  

Thankfully since I was out of the house for half a day at the EEG she was super motivated to figure out the cup and finally did and drank so much that her pediatrician said to watch her but that she should be fine without going in.  And by the next day her heart rate was back to normal.  


And that was great until last week when she promptly forgot how to drink out of the cup and would desperately try to drink only to have the water spill out of her open mouth.  

By the second day of this I was freaking out.  

 I left messages with both her neurologist and pediatrician and made an appointment with her pediatrician for the next morning.  

She finally began to refigure out the cup that night and got a few sips. The next morning she got a little more water down and finally had a wet diaper, while we were in the doctor's office, which the doctor told me kept her from being admitted then and there.  

And she's back to guzzling water like a champ.  

And that's more of less where we are now.  

I keep thinking we're past whatever is going on and then something happens and I'm panicking wondering whether this is just a normal toddler thing or if it's something that should send us to the ER, because if the last year has taught me anything it's that it can be really hard to tell the difference.  

Is she being normal toddler clumsy or having seizure?  How can these two things be so hard to tell apart?

I have a letter in my car that would admit Tessie, without stopping to register, to the PICU at our local hospital if she starts to become incredibly clumsy again, but do I use it if she's having an actual seizure, because I've been told not to bother coming to the hospital if a seizure is less than five minutes long, just to call the neurologist.  

Honestly it can be so confusing sometimes and the line between "am I being paranoid because so much has happened" and actual panic because this can be really frightening is so fine.

But I'm clinging to the fact that she is totally and completely healthy the vast majority of the time.  And cute.  Let's not forget cute.  Although I may be more than a little biased.

The boys think she's pretty cute too though.