Monday, January 15, 2018

Our Very First Vlog

The kids have been watching a couple family Youtube channels and this morning I let them convince me to make a channel of their own.

After watching a few videos on video editing I told them that if they picked up the downstairs (where they'd spent the morning playing) I'd film them playing and this is what happened next.

I threw on an introduction and added some clip art and we now have our very first Vlog.

Sadie was incredibly excited when we watched it before she went to bed and asked if we could make the second one tomorrow.

I told her I didn't think that was super realistic, so her new goal is to get one made by Saturday...

That's a little more realistic.

I guess we'll see.

Here is the latest.

They had a lot of fun making.

Actually we all did.

Sunday, January 14, 2018

Answers and Autism

We made it to Boston and I nervously bundled Tessie into the car, relieved that Maggie had been calm all morning long so Paul would be able to make the drive with us into the city.  

He was totally calm.  I was a bundle of nerves.

"We know what they're going to say, right?  This isn't a surprise.  We've known for a long time.  This isn't news." was his calming advice all the way there, as I chattered about being nervous, jittery and impatient now that we were so close to officially being told what I'd suspected for a very long time.  

We arrived an hour early and grabbed lunch at the bagel place near the Cognitive Neuroscience Lab and then it was time.

Tessie was not a fan of the EEG cap this time around (she is not a fan of hats in general) but after being bribed with a slew of animal cookies, bubbles, and the Curious George movie on TV she relented and sat still.

She relaxed and watched three of the videos they wanted her to watch with the cap on, to see what her little brain does when she sees people saying simple words she should understand and what her brain does when she sees people making random sounds, and then it was time for her autism testing.

After that we went into another room, across the hall.

First they did an ADOS.

The ADOS is basically done where the test administrator plays with the child, or in Tessie's case attempts to play with the child.  Tessie used her rather considerable willpower to ignore Ms. L, and wander around the room, testing out the baby gate that led to the hallway, and refusing to give the baby doll a bath, make the frog jump, or look cast a glance at the board book.

When the tests were done we sat and went over the results.

Tessie qualifies as having autism according to the test results, although the study doesn't offer official diagnoses.

We'll receive the test results in a few days in the mail, on the official university letter head, to give to her doctors.

The results will look kind of serious and scary at this point (or so we've been warned), but that's in part because of her lack of interest in the test giver, one of the difficulties in administering these tests to tiny kids on the spectrum, and they told us to remember that Tessie is a happy, easy going baby who does communicate in her own way quite well, even if it is without words.

We talked a bit about Maggie's results, when she was three, on the same test, and how I'd remembered opening a the packet and seeing her scores in the lowest .5% "of kids on the spectrum" and being afraid of what that meant for her future and now she's doing things that I couldn't have imagined back in 2013.  "I imagine it's not unlike that." I said, watching Tessie throw blocks around the room.

The girls have similar verbal skills (looking back to one year old Maggie) and neither one was particularly interested in playing with the toys in a neurotypical way.

So that's where we are now.

We're eight months away from her appointment for autism testing in Michigan.

We're praying that there are enough cancelations that she can get in sooner, because until she gets seen for that test she will get one hour of week of therapy and that's it.  Which, knowing how important early intervention is, is killing me.

Even with all the trainings I've done, and everything I've learned with Maggie, I'm not even close to be on par (success wise) with the therapy Maggie receives and doing what we do at home her delay has grown from 20% to 40%... it makes me feel physically ill to think of what it will be on August 8th.

The lab strongly recommended we come back for testing at the Developmental Center at Boston Children's.  Paul's going to call our insurance company as soon as the weekend is over the try and get it approved.  I am not optimistic.

Our last conversations with them have involved them denying Mags' seizure/migraine med last week suddenly (apparently, after years, they suddenly objected to the sweetener in the compound... sigh...), which was ultimately approved, and the denial of Tessie's genetic testing to determined whether or not she needed a tracheostomy and a ventilator when they were still afraid she had CCHS, which they continued to deny testing for (and which the genetic testing company ultimately covered).  So. My faith in them is very small.

I'm going to be making some phone calls and trying to determine how much of a difference going will make, and I'm going to be trying to get a feel for the length of the cancelation list at the moment, and I'm trying to see if they'd allow us to travel inside Michigan for testing at another location (pretty sure the answer is no, but I might as well ask... because if traveling to the UP meant shaving off months I would be in the car like that).

If the insurance says no to the developmental testing the lab recommends I'm not really sure what we'll do.  I guess we're taking it one day at a time right now.

For the moment the most important thing is that our tiny whirlwind princess is happy, and healthy and communicates remarkably well with us and all four of her older brothers and sisters who are only too happy to answer her babbles and rough house with her and keep her out of the trouble that, like a certain older sister, she tends to get into.

Who turned out the lights?
And that is the latest.

At least this time we have an idea that the road ahead isn't nearly as scary as we thought the last time we were here.  It's just different.  Challenging, certainly (but everyone has challenges).  I just wish I could get those tests through now.

The waiting is the hardest part.

Friday, January 12, 2018

From the Plane to the Van: A Change of Plans

I've been too nervous to write, or email, or even text.

I've been pacing and cleaning, but not packing, not yet.

Tessie and I were supposed to leave tonight, flying on Jet Blue from Detroit to Boston.

The weather, at least from what I'd seen all week, looked mild.  We don't have cable but every time I checked I would see "flurries in the a.m."  That looked non-threatening enough.

Still, even as the snow melted yesterday and a balmy breeze blew through the yard I was uneasy.

As I drifted off to sleep last night I laid out the day in my head.

Get Sadie to school.  Patch doesn't have pre-school on Fridays, so he would be home with Tessie and James and me.  Put away the last load of laundry that was still in the dryer and pack.  Scrub down the spare car seat and adjust the straps to fit Tessie. Pack a bag. Clean up any messes the boys had made in the mean time, and meet with Tessie's early interventionist for the last time, to be introduced to the special education teacher that would now be taking over her case.

Sadie would get home.  Paul would come home from work early. And I would install the carseat in his car and off we'd got to the airport for our seven p.m. flight.

I noticed how tired I felt at seven last night, as I was helping get the boys ready for bed, and didn't relish the idea of wrestling my twenty five pound lap baby for an hour and forty five minutes while I felt like dropping off to sleep.

At 5:45 my alarm sounded and for the first time in months I hit sleep, thinking that Sadie is always ready fifteen minutes before the bus arrives anyways, and that she could sleep in a few minutes too.
Before five minutes passed, my phone rang.

It was Maggie's school with a robo call, canceling the school day for "anticipated weather conditions."

I rolled onto my stomach and hit the email icon on my phone as Paul said "I got a text that the flight is canceled."

The next half hour was a blur.  Sadie's school called next, and then a text came from Maggie's therapy center and Tessie's therapist canceling their sessions as well.  Our entire days had been effectively cleared.

JetBlue had rebooked me on a flight the next day at 6am, which technically should get me to my appointment but I had played that game before.  Our first flight had been the afternoon before the appointment.  It had been cancelled.  They had then promised to get us on a flight the next day.

That had also been cancelled.

I didn't feel confident taking another flight that would make us vulnerable to the whim of the airline.

Which is what this felt like... I understood being grounded for the blizzard in Boston last week...  but it was harder to accept being grounded for a snowstorm that was dumping a few inches of snow and that would be out of Michigan hours before my flight was set to take off.

I'm sure there's more to the decision to cancel the flight, and that obviously I'm not privy to the decision making process, but at 6 am I knew that I wanted the decision of whether we were going to Boston or staying to be out of JetBlue's hands.

After checking the weather online and out the window we agreed to give driving a try.

I became a packing whirlwind.  I threw together a bag for Paul, Tessie and I, and then grabbed backpacks and packed four backpacks for the four big kids, each one full of everything they would need for a weekend away from home.

At the end of an hour of getting kids dressed and packing I woke up Tessie, got her a quick breakfast and everyone piled into the car.

It had started to snow.  There was maybe an inch of powdery white stuff turning Michigan back into a wintery wonderland.

It did take a little bit longer than normal to get down to Ohio, which was especially disappointing to Sadie who asked "are we in Ohio yet" approximately fifteen minutes after we pulled out of our driveway.

The storm was moving along with us, but by the time we got midway through Ohio we'd outrun the snow and now, nine hours into our adventure, we are halfway across New York, and we should make it to our destination just past Boston a little after ten.

"Are we there yet?" is our family motto.

Unfortunately so far the answer is a resounding no.

The entertainment of the moment is spending the afternoon on hold with JetBlue as I write (so far this entire) post.  Last time after the cancellation the first person we spoke to attempted to charge us to reschedule the second cancelled (by JetBlue) flight.

I'm not sure what is going to happen, or what I even want to happen, when they pick up the phone this time.  Because I really don't want their tickets... anywhere.  

If I ever get to talk to I guess we'll see.

Here is a glimpse of our day:

Update: JetBlue refunded the tickets!  So at least that is done with!

Friday, January 5, 2018

One More Update Before Sleep

Paul is the hero of the day.

He sat on hold for four hours this morning.

After the first two hours jetBlue picked up and he told them the situation, that our first plane had been grounded and we'd been moved to a second plane that had also been grounded and that now we'd missed our appointment in Boston.  

We had good news though.  We'd managed to get an appointment on the 13th.  Could they help us get a ticket so that I could get there with Tessie.

We'd be on our own now, he'd be staying home with the big kids, but at least she'd be seen and we wouldn't be waiting until summer for that ADOS.  

There was going to be an up charge for that, the woman on the phone after two hours said.  The thirteenth put us outside the travel window where moving our tickets would be complementary.

He asked to speak to a supervisor and while he waited he was cut off and the phone went back to a dial tone again.  

After four stressful hours on hold it was straightened out, without the additional fee and, barring any disaster, we're hoping to be there next week. 

I'm a little more nervous after everything that's gone wrong up until this point though.  

If there could not be any blizzards next weekend that would be really, really great.

Thursday, January 4, 2018

A Change of Plans

The last twenty four hours have been tough. 

We were supposed to fly to Boston early this morning for the study that Tessie's part of, which includes, autism testing there.  It's her 18 month visit.

Last night that flight was canceled.

Paul got on the phone and managed to get us moved over to two seats on a flight early Friday morning. And then we waited.

We got an email asking us to check in this afternoon and when I clicked to confirm it, the confirmation wouldn't go through.  Paul called to make sure that everything was fine and he was assured that it was.  

I had just finished repacking our bags, and was about to move Tessie's car seat over to Paul's car so that we could leave at 3 am, when my phone dinged.  

I glanced down and saw the words "flight canceled" flash across the screen not ten seconds after Paul told me that the woman at JetBlue had assured him that all was well.  

But apparently word must not have come down to her yet, that basically all the Friday flights were going to be cancelled too and we were out of luck.  

We're not really sure what is going to happen now.  Because I really want to find a way to get there.  I really would like to know how Tessie would do on an ADOS and Mullin now, instead of in ages, in August.

Nani and Bopa were here from California staying with the other kids while we flew with Tessie to Boston Children's and it is highly unlikely I'm going to figure out an alternate plan before they return home in a few days so... today was tough.  

The number of tears that followed that text were not insignificant.  I did not take that news super well.  This trip was kind of a big deal. And not going was/is... a big deal.

Out of all the days that I randomly picked a couple of months ago I had to pick the blizzard "bomb cyclone" week to schedule her appointment.   

There is so much coming up in the next few weeks, but I'm hoping we can figure out something quick out, even if it's just me and Super Tess. 

Wednesday, January 3, 2018

The Moon and Taking Off Her Backpack

Maggie has found a new passion.  

For the first time in years she's found an interest that rivals mermaids.

I first posted about it on Facebook when I told this little story:

"The other day Maggie was strolling by and said “Sun. Moon. Planet.” And then pointed out the moon outside the window.
Now she primarily speaks in scripts (when she's at home), the same ones over and over again and usually lists of nouns. Rarely anything new. This was new. 
So I said “Comet. Meteor.” Just to throw something else out there and she turned around around and gave me a huge grin. 

Today I was sitting in the same chair and Maggie strolled over and said “Moon. Sky. Satellite.” before continuing on her way across the living room. 
Did we just have a conversation that wasn’t about mermaids?"

A Mermaid. By Maggie.
For the past few days she's kept bringing up the planets and has been extremely excited every time the moon has passed by one of the windows in the house. 

When I described her new interest to Paul I said "You know those old videos of teen girls seeing the Beetles? Like that.  But with the moon.  Outside our house."

I finally put on a show about the planets on Netflix and sat with her to watch it.  Every time the moon came on she would cheer and ask me to lift her up to the TV so that she could touch it as it passed across the screen. 

Then she ran into the bathroom and returned with something cradled in her hand. She stared at it for a moment and then brought it over to show me.

As she held out her hand she whispered "Moon Doll."

My heart just about split in two.

I love her so much.

The social story didn't work out quite the way we hoped.

I read it to her. And she was very sad.

She understood what it was saying, about not going to school until the eighth. There were tears because eleven days is a very long time.

But she hasn't put her jacket and backpack back on since we read it.

So the drama and disappointment of each morning ended, after about an hour, and she's been able to enjoy her holiday, now that the expectation of school is out of the way, and is actually having a lot of fun, which is wonderful.

I texted her therapist and told her that it worked, not quite how we thought, but that it had been awesome none the less.

Sunday, December 31, 2017

2017: A Look Back at Tessie's Year

A year ago yesterday Tessie and I woke up in the hospital after her very first sleep study and the tech looked at me as she unhooked her and told me not to worry too much because a lot of babies out grow these things as they get bigger.

I wouldn't know for two weeks that she'd just witnessed a sleep study that, when it was finally read by a doctor ten days later, and then passed on to her neurologist a few days after that when we finally made our way to PICU a doctor there would have told a nurse before we arrived after reading her chart that the very first thing that they would need to do was perform a tracheotomy the moment I carried her in the door.  

Because her numbers looked that bad.  

She had 45 central apneas and 136 hypopneas.  Her oxygen saturation had dipped into the 70s.  

But then we walked in and she looked like this and the most common phrase heard in the room was that "this is this baby?"

No one could believe that it was possible.

Which is how I ended up going home after that first trip without any sort of monitoring equipment.

Which turned into a sort of nightmare of its own.

2017 was a rough year in a lot of ways.  And a fortunate year.

I know that we are very very fortunate that she was okay and that she made it through all the nights that she slept without an alarm.

From January until March (really from June until March) she didn't have an alarm and I would watch her sleep and see her stop breathing and gasp when I touched her chest to wake her.

And I pushed and pushed and finally got a referral for a second referral.  That took a month of phone calls.

We went to the children's hospital.  Once they got the referral it only took two days for them to get her in for a sleep study.  By that night they had her on a monitor.

I thought our troubles were over, mostly because I didn't yet understand how her monitor was something that she would have to prove over and over again that she needed.

Every six months she'll have to show that she's sick enough (when she's asleep) to keep it.  

Which is stressful because she does have good nights.  And very, very bad nights.  

What if she's having a good night on the night of her sleep study?  

I can't tell beforehand what kind of a night she's going to have.  I can't even tell afterwards if she doesn't have an alarm on. As long as she starts breathing again every single time that she stops.

And the thing is that she is perfectly physically healthy when she isn't not breathing in her sleep.  She is strong.  She has great gross motor skills.  Her doctors have run just about every test they can think of and there's not explanation, and the "prematurity" explanation is beginning to seem less plausible to any of them as she gets bigger and is now on oxygen at night when she wasn't before (my 8 lb 12 oz, premature central apnea baby).

A couple of weeks ago they called to schedule another sleep study.  Already?  I said.  When? I asked. February.  The voice replied.  I thought it was six months. I said.  But I'd realized how this works.  The doctor says "repeat sleep study in four to six months" and they call and it's always four months to the day.  Which really adds up.  

It's the difference between three studies a year instead of two.

Especially when you're just trying to keep the monitor for as long as possible because you've seen your kid stop breathing more times than you can count, sometimes in a single night and you've asked the people who do the downloads "hey can we just buy this thing, how much would it cost?" and they got you a quote and it was well over ten thousand dollars.  

"February doesn't work for us." I said, finally learning.  "Six months out does.  Let's schedule that."  

It only took me an entire year to learn to ask.

2017 was the year when we had the very scary sleep study that became the study that had to be wrong because she had no apneas in the PICU on a good night, that was repeated and ended up being right three months later.  It was the year when she had another good night in October and almost lost her monitor again, followed by another very scary night and going back on oxygen on November.

And it was probably the year I got a reputation for pushing and pushing and pushing and believing what I was seeing with my own two eyes even when I was told that it was not possible (after someone wrote on her chart "does not have central apnea," which I found out was why no one would give her a monitor after her first trip to the hospital).

I am ready to leave 2017 behind.

2018 is stretching out before us.

In a few days we leave and take Tessie back to Boston, not for anything apnea related but for the second part of the autism study that she started when she was one.

As the child who has carefully avoided looking at us since she was a month old, and who preferred not being held from the day she was born (literally) I will not be surprised by spectrum-y results, but we shall see.

She is most definitely her big sister's apprentice:


Sometimes I think that we might not have enough mermaids around for Maggie to play with.  

Then Maggie decides to dump out about a quarter of her collection in the bathtub so that they can go for a swim and I realize how crazy that is.

There's hardly any room left for her to join them.  But somehow she always squeezes in.

Friday, December 29, 2017

The Anti Update I Wish I Wasn't Writing

Today's news is a little less happy.

When I thought about writing this post I thought that I'd jokingly start it by saying that I should have been more specific with my prayers.

I prayed that I would be better for Christmas and I got my wish.

Maybe you can see where this is going.

Does anyone remember "Sadie frowns?"  They actually
predated Grumpy James.  I'm breaking one out
for this post.
By the third day after the antibiotics ended I had a feeling that things were going in a negative direction for me.

I told myself that it was just psychosomatic, and that I was only feeling tired because I was worried that it was coming back.

By the next day it was a little bit clearer that it was more than that.

And yesterday I woke up feeling like I'd been hit by a truck.

I called the doctor's office and asked to make an appointment with my doctor.  I was informed that my doctor didn't have any appointments until February.  I asked to make one in February, and thought to myself that it was likely that I'd still be feeling like this, then. Actually February was out too because... he was retiring.  I actually cried then, tears, because I felt like he was the only person at the office who actually believed me.

The receptionist, bless her heart, went above and beyond in convincing me to make an appointment, since I was more of less ready to  give up and curl up in a corner somewhere and wait for whatever was going to happen next.

A Maggie Frown too?
I don't think Maggie Frowns were ever a thing around here.
Paul, tired of listening to my lamentations about whether this doctor (his doctor) would believe me, came with me to the appointment (assuring me every ten seconds that yes, he would), after I asked him if maybe he could fit it into his schedule a half dozen times (a big deal since he hasn't taken off time to even come to an OB appointment in about five pregnancies).

When the doctor arrived he went over the chart briefly, and asked a few questions and pointed out that I'd come in for a fever and here I was without a fever, because of course when I got to the office it was one of those moments when the generally low fever ended up measuring 98.5.

I lasted a solid ten seconds before I broke down in tears, managing to explain that I was crying because at this point I I'd been sick for so long and after the last appointment I really felt like no one believed me and everyone thought I was just crazy coming back over and over for a cold.

It took me so long to find a picture of Patch not smiling that I began to wonder
if one actually existed.
And I calmed down and told him about the filling and the 105.2 fever, and the thirty days of fever before my smart thermometer stopped working, and showed him that data in my phone from the smart thermometer, and told him that before this I was running seventy minutes a day and felt great and now I can barely stay on my feet a few hours a day and then I have to lay down and curl up in a ball to recover from the little that I've managed to do.  And while everyone else might be toasty warm I'll be in layers of socks and pants and two sweaters and five blankets and I'll still be shaking and shivering... which isn't that unusual but I am more cold than I used to be.  Much more.

"And when the other doctor ordered the Z-Pack, I know it was just to humor me, and she said not to take it," I half gasped the words, since I was talking so fast, "but of course I did, because I was desperate, so desperate, for anything, and it made me better, so much better and I was up and running around and I felt like myself all day long.  And then I finished them.  And now I'm sick again.  And everything hurts."

I'm not as tired as I was before, but it gets worse every single day.

I knew James wouldn't let me down with a frown (or a hundred)
to lighten the mood.
He said that he suspects an infection, and while he can't be certain, he does specifically suspect a blood infection, because this all started the day after that four hour filling that was below the gum line with lots of bleeding.  Besides that there are little things, my spleen's enlarged, some elevated liver counts, but almost everything else has been normal.

So now we're waiting on the blood culture they took tonight, along with a lot of other blood work, and a referral to infectious disease to try to work out if this is some sort of bacteria in my blood from that filling back in November.

Tess also doesn't really frown because she has her thumb.
So after looking through hundreds of Tessie pictures... this is as close as it gets.
I think that's a good thing.
He did stress he does believe me (probably remembering that I started the appointment bursting into tears very much fearing not being believed after the previous appointment), and that this most definitely isn't normal, something is wrong, now that we're going on two months since whatever it was happened that took me from running around feeling healthy, training for races, halfway through a 5k to 10k program, working on increasing my speed to... how things are now.

And that is the latest.  I guess that was a long way of saying I am sick again and would love and appreciate your prayers.

The last weeks break was lovely... and I wish I was not writing this.

Thursday, December 28, 2017

Maggie and the Holiday Break that She Wished Wasn't

Maggie's internal clock is fantastic.  She knows which day of the week it is every day. And she knows which activity she has on any given day of the week.  

If it's Saturday she knows, without being told, that it's Saturday and that she's going to ride horses.  When she wakes up in the morning she tells me "riding lessons.  Horse back riding lessons?" And than looks at me expectantly until I confirm. 

If it's Monday she knows that it's Monday and not only that it's Monday, she also knows if it's one of the two Monday's a month that her class takes a field trip to go to swim lessons at another school.  

She knows which therapist she has on Monday and Wednesday and which she has on Friday, which is rather impressive considering she has at least sixteen amazing people who work with her regularly.  

Every single Sunday when she wakes up she asks "Mass, Jesus, doughnuts?" 

So I should not have been surprised, despite my explanations of "holidays" and "no school" and "Christmas break" when she walked up to me seconds after the presents were opened on Christmas morning.

She wouldn't have been going to school as it was.  She was sick, and we had six inches of fresh snow and it was coming down hard, and it wasn't expected to stop, except for a brief break some hours later in the day.  We were snowed in with our two wheel drive van.

"Bus?" She asked expectantly.  "School bus, please? Lunch, please? Backpack, please? Jacket, please?"

I began my explanation of the holiday again and as you can see, it was convincing.

She wore her jacket, for the next ten hours.  At six, when she was certain she wasn't going anywhere, she took it off.  

The next morning we had the same conversation (along with a conversation about her locker, and class).  She wore her backpack and jacket all day.

And again yesterday.  Which is when I texted one of her amazing therapists.  

She texted back.  Maggie does still have a couple nights a week of therapy during break. 

And last night was one of those nights.  

And so it was that she came home with this social story, which we will be reading this morning.  

I love it.  And I love Miss K, who quickly came up with it and put it together for her.

Maggie is so smart.  I'm really hoping it helps.

And I love that she loves school this much.

Tuesday, December 26, 2017

Christmas Tessie

When I was writing this post I had the song "Christmas Monkey" from the Curious George Christmas special of a few years ago going through my head, except my brain kept replacing monkey with Tessie.  And that is basically the sound track for this post (I'm sorry if you have a preschooler who watches PBS or Netflix and you now also have that song stuck in your head).

All of the kids had a fun day yesterday but watching everyone, even her siblings, loved watching Tessie enjoy her second Christmas.  It's been a busy couple of days and tomorrow I'll have lots to get caught up on, but I wanted to share a little glimpse of yesterday's Tessie highlights before I go to sleep:

Monday, December 25, 2017

Merry Christmas

Merry Christmas!  I hope that if you find yourself reading this tonight, that you had a wonderful day.  

I was going to do Christmas cards this year.  I really was.  Sometime this summer I came across my address book and I promised myself that I would make a habit of it again.

Back in the days before children I would have them addressed and mail them the day after Thanksgiving.  Then Sadie arrived and it got a little later.

After we moved to Michigan my card mailing fell off altogether.  Last year I designed and ordered cards and I still have them.

This year I was less ambitious when I ordered.  I designed the cards.  They look like this:

And I was planning on sending them out to family and a few friends.  

Then time began to get away from me and one day I realized it was rather late.  More or less too late.  So I made a fair dent in the cards sending them out with the little gifts to Maggie's small army of helpers, laughing at the look on James' face in the top photo every time I slipped it into an envelope.  

And then it happened.  On Christmas Eve, as we were leaving for Mass and walking to the car, my mom offered to attempt to snap a photo and for once no one was thrashing around or sobbing.  Maggie wasn't thrilled with the cold, but all in all it was a very good photo for our family.  

So here is the imaginary photo card that I wish I'd mailed out this year.  

As you can probably imagine I'm pretty excited about those five little pairs of eyes looking out at the camera.

I hope you had a Merry Christmas!  

Sunday, December 24, 2017

A Happy Update. Finally.

I think I may have gotten my Christmas wish for the year and for that reason I have an update, and it is finally happy.

I went back to see my doctor last week because I was still sick.  I'd been sick for nearly fifty days, including low fevers, and almost non-stop headaches, neck pain, and pain that felt suspiciously like my kidney infections of old since I had a fever of 105.2 on November 4th.  My doctor's office was now about to go on holiday for Christmas, and so, after three weeks without an appointment I gave it one last try.

I knew that if I saw my doctor he would concerned and probably a little bit upset that I hadn't come back sooner.  He had not liked that I'd had a fever for thirty days.  He wasn't going to like that we were now past forty five.

But he was booked solid and so I saw an office partner, who I'd never met before and she said that I was perfectly fine, and had "the common cold" with the air of someone who's time had just been wasted.

I mean, I'm sure it looked like I was big whiny baby who had come in with a cold.  She could see that I had a fever.  According to her records, since my neurology appointment for migraines three days earlier I'd lost eleven pounds (my first neuro appointment in three years since I can finally take migraine meds now that I'm neither pregnant nor nursing).  And I couldn't keep much food down.

It didn't feel like a cold.  I mean yes, I was coughing and I did feel like I had a sinus infection too.

Honestly I felt like I was falling apart.

Tess demonstrates what I felt like.

"Fine, I'll give you a Z-Pack, but don't take it. It won't help. What you have isn't bacterial. It won't do anything. I'm sending it in now.  Do not take this before Thursday.  At the earliest.  If you get much worse.  It's not going to help you at all."

"What do I do if I still have a fever?  I mean I have had a fever for over forty five days now.  I just want to not be sick anymore.  When do I come back?  If this doesn't go away. When do I come back?"


"I've had a fever, non-stop, for more than forty five days now.  At what point do I worry?"

"You don't.  You won't.  This is a common cold.  Have a Happy Holidays!"

She shuffled me out the door and I managed to check out before bursting into tears in the parking lot, while making a mental note that I would be more careful to make sure I saw my own doctor even if it meant waiting a few days.

I filled the Z-Pack because there was really nothing else to do.  And I took the first two pills that night because I hoped that maybe she was wrong and that it would help and I had been sick for what felt like a long time and was desperate.

I kept coming back to this picture because this was the day before the race.
It was literally the last time I felt okay.
And probably because I remembered the days when patients with mitral valve prolapse (which I have) took antibiotics before dental procedures... and while I know studies say it's not necessary... after you've been sick a long time... you start to wonder and look for answers everywhere, even if you logically know that if you had managed to pick up something bacterial things already would have likely taken a very bad turn.

Now to go back, so that that previous paragraph makes a bit more sense. The night before I got sick I had a cavity filled.  It took over three hours to do the one cavity because while it was small, it was in an awkward position.  It went below the gum line and there was so much bleeding they had to do something to stop it. It was pretty miserable.

When I had a slight fever the next day, I went to my race and slogged along, because I figured that the fever was my bodies response to what had happened with the filling. Later, when the fever went up six degrees, I assumed it was a virus, that it had nothing to do with that, because my kids had been sick the previous week and had some pretty high fevers.

Two days into the antibiotics I was up cleaning the house.  After four days I was outside cleaning out the mess that had accumulated in my car after not being cleaned out for two months (usually that's a weekly chore).  And yesterday I was on my feet all day, running errands and having fun with the family, and while I get tired more easily now and have to sit down more, I felt fine.

Yesterday was the first day since I finished the course of antibiotics.  I'm a little nervous that whatever it is, is going to come back.

Paul saw this one and called it my "getting into trouble" look, or something like that.
Really it was my "trying to get a picture of my hair color that didn't look ridiculous" face.
And I'm thankful it's gone.  I don't know if it had anything to do with the filling, or if it was all purely coincidental.  I mean I guess I don't even know for sure if it was the result of taking the antibiotic or if I just finally got better at exactly the same time, although I do tend to credit it, since I felt pretty significantly better within twenty four hours and improved more and more with each dose.

I just know that, right on time, I got my Christmas wish.

Thank you to everyone who prayed and reached out to offer well wishes.  It has been one roller coaster of a fall and winter so far, and I am looking forward to going to Mass today and tomorrow.


Have a Merry Christmas!  I'm so happy to share this news!