Wednesday, December 21, 2016

A Tessie Update

Patch had his well child checkup today and I managed to wait until the end of the appointment to ask if he could explain to me what high ammonia levels in Tessie's blood test results meant and what the neurologist is looking for when he sent the amino acid and organic acid tests to Mayo Clinic. And he was awesome.

 He explained they're sending them there because they're the ones who run that test, because it isn't common, and that he's worried about a urea cycle disorder, which is a genetic metabolic disorder. 

The good news though, is he brought up her chart and looked at the levels and said that she had gotten a 55, which is abnormal, but that when he's seen kids with urea cycle disorders their numbers were in the hundred to thousands, so relatively a 55 isn't that bad.

 He said that if I thought she was worse that he would admit her, but since she's actually seemed slightly more alert this week I think we're seeing an improvement over how much she was sleeping before.

 We won't get the new results back for a week or two but compared to how worried I was yesterday this is a definite improvement.

And that is the latest Tessie update!

Tuesday, December 20, 2016

December Memories and Worries

December is flying by and winter break is already here.  Here's the latest news.  It's almost a Quick Takes but I couldn't wait until Friday.  

For the first time since the girls were tiny we got pictures taken at the mall, this time with a "sensory friendly Santa."  We'd signed up in advance and showed up on Sunday morning before Mass.  I was impressed when we saw that there was a waiting area with tables with coloring sheets and crayons, snacks, a play area, and a movie area with bean bag chairs everywhere.  

And this?  One of my all time favorite pictures.  

We almost had tears when Patch thought that he wasn't going to get to sit next to Sadie, but when he found out he could sit with her disaster was averted.


I snapped this on one of the last days before our world became an icy winter wonderland.

James was a big fan of autumn.  He is not a big fan of winter.  I have yet to convince him, even completely bundled up in snow clothes, to play outside in the snow.  He cries when I suggest it.  He is incredibly suspicious of snow.  He'd spend hours outside in the non-snowy cold.

But snow?  Not a chance.

Puddles are more his thing:

We attempted to make gingerbread houses.  I'm not sure that you can say they were a success but the kids did think that they were tasty.

And I was ridiculously excited that I could buy the gold chocolate coins for Saint Nicholas Day this year.

Patch and Tessie are adorable together.  Last night Patch told me:

"Mommy, I love Tessie so much.  I love you so much Tessie.  Mommy.  Tessie's touching my ear.  No Tessie, no.  Mommy, tell Tessie no touching my ear.  You need to have a talk with Tessie."

Tessie also had her first neurology appointment.  I came home with a to do list.

The main concern wasn't her lack of eye contact or missed milestones. The main concern at this appointment was her "hypersomnia" or the fact that she sleeps a lot, around twenty hours a day.

Who knew that a baby could sleep too much?  Not me.  I mean, with my other kids it wasn't something I ever thought of.  After all sleeping too much?  It sounds kind of nice.

Apparently too much sleep really can be too much of a good thing.

During the appointment at one point her doctor said, "Does she really sleep that much?  I mean, she's awake for this appointment."  And I pointed over to where she'd fallen asleep in the ninety seconds since he'd finished his neurological exam.  After that he started ordering tests.

After the appointment I scheduled the sleep study.  I took her to get her lab work done, and I set dates for Missouri and Massachusetts for the MRIs and EEGs.

And if I'm totally honest I have to admit that I expected that the blood work would come back entirely normal.  After all, we've gone through all this before and it's always been normal.  And when I didn't hear anything for a little over a week I forgot about it.

Then we got a tree.

Now, a tree around here is a big deal.  Last year was the first time we'd gotten a real tree.  In the years before we'd put up a little fake tree, on the fireplace mantle, while praying that Maggie wouldn't somehow destroy the whole thing.

Last year we got a real tree, that was fairly big, but we put the tree up on an entertainment stand where it was less tempting.

This year we got a big tree and bolted it to the floor.

And she hasn't touched it.  A certain toddler has taken apart a few ornaments but other than that it's in one piece.  We're all pretty thrilled.

And we celebrated Saint Lucia's Day.  Sadie managed to slip downstairs with me before anyone else was awake.  She walked upstairs through the bedrooms with only her crown lighting the way and it was really fun.

The highlight for me was James who was laughing and calling "Sadie!  Sadie!" from his crib the moment her crown of battery powered lights came into the room.

Patch was a shepherd in his preschool nativity play.

We didn't have anything shepherd-ish so I sewed him a costume.

Paul pointed out that he looked more like a little Jedi than a shepherd.  So I googled Jedi images and realized that he has a point.

James maintained his title of "Grumpy Baby" by coming with me the last two times I've gone shopping and shouting "Don't touch that!" every time I reached to pick something up.

Is that really what I sound like, James?

He also had an OT evaluation (for sensory stuff) and got measured for new orthotics because his are already painfully small.

He's enjoying wearing the clogs that his orthotics wouldn't fit in while we wait for the new ones to be made.

Another highlight was a special sensory friendly night at the local zoo.  There was Christmas cookie decorating, soup, ornament making, and a walk through the snow to look at all the lights and Christmas trees.

The other sensory friendly event we went to this month was a sensory friendly airing of Moana.  When we walked in I whispered to Paul that I thought we had a 50% chance of success (despite the flier that said that screaming and running were fine).  He whispered back that he thought our odds were closer to 10%.

The last time we tried a movie, in June, Maggie was immediately overwhelmed and grabbed my hand and begged to go before the opening credits were over.

This time with the lights turned up and the sound turned down she sat, completely silent, in her seat for the entire movie, with a huge smile on her face.

I am so grateful for all the sensory friendly opportunities we've had lately.  As she's getting older we're able to go out and do so much more.

The highlight of the month for the kids has been the snow.  They can spend hours in our backyard sledding from the top of the hill to the bottom of the yard.

Patch is determined to shovel the snow out of the backyard like Daddy and Mommy shovel the driveway.

Speaking of shoveling the driveway I was surprised when I arrived home today to find myself stuck in the snow.  I was surprised because we'd shoveled the driveway and it hadn't snowed today.

However apparently one side of our house is a wind tunnel and the wind moved a massive amount of snow from the side of our house (where nearly a foot of snow is now bare grass) to the driveway where I opened the door and found myself up to the tops of my boots in snow, trying to figure out what happened (I was confused for a solid ten seconds).

I know it's windy here but I didn't know it was move all the snow from the side yard to the front yard windy.

Which brings me to this week.

Earlier this week I got a call from our neurologist's receptionist.  I actually started completing her sentences in my head before she said them.  This office calls about all their test results and he sees both Maggie and James so I've gotten this call quite a few times and I wasn't expecting anything abnormal.  "Hi Mary-Therese's mom?  This is the receptionist from Dr. D's office.  We got the test results and their normal."  I said the last sentence silently in my head before she said them.

Except she didn't say them.  She said "We got the test results and the ammonia levels in Mary-Therese's blood are elevated.  Dr. D wants you to call back if you haven't heard from us the week after her sleep study to run more labs.  Make sure not more than a week passes."

I got off the phone and told Paul that he couldn't be too worried if the was willing to wait a month for new tests.

Today my phone rang. It was the nurse from the same office calling to tell me that James' orthotics prescription had been faxed in.  I thanked her and hung up.  Then I kicked myself for not asking her about Tessie, because I've spent the week worrying about what high ammonia levels in blood tests mean.  Five minutes later the phone rang again.

It was the same nurse.  She was calling to tell me that the doctor had reviewed the tests and Tessie has elevated ammonia levels in her blood and that I needed to take her in for blood and urine tests, to check amino acids and organic acid levels.  This time I did ask her what high ammonia could mean and she said that she didn't know and he hadn't made any notes of what he might be thinking it meant.

I got off the phone and got the kids loaded into the car and picked Paul up at his office so that he could watch the other kids and took Tessie in for the tests and now we're waiting for the results.  

She is still my perfectly happy cuddle bug.  But I'll admit I'm worried at this point (google is not my friend) and I'm really praying that the next phone call comes quickly and says what I expected the last one to say.  I'm ready to hear "We got Mary-Therese's test results and they're normal!"  

If only I could combine James and Tessie's hours of sleep and divide them in two... then everybody would be getting a good nights sleep without going overboard (and without waking up like a certain toddler sometimes does).  

Wednesday, December 7, 2016

Lily's Goodbye

Yesterday was hard.

I'm not even sure if I should write about it.  I am because writing is how I process things.  But I feel like it will take a long time to finish processing this.

Yesterday Paul and I found ourselves faced with a horrible, horrible choice and I spent most of the day in tears, or trying not to cry, first in the car on the way for Tessie's first neurology appointment, then in the car waiting to pick up Patch and then as I walked into Maggie's therapy center to drop off her lunch.  Paul described it as one of the hardest things he's had to do since becoming a parent.

When we brought Lily home, fourteen months ago, I never imagined that our lives with her would end so abruptly.

It started when I saw an add for Great Pyrenees puppies.  We'd been talking about getting a dog for a long time.  We'd been scanning the humane society websites in our area, but they were filled almost entirely with pit bulls and chihuahuas.  We knew we wanted a larger dog, and having had a pit bull mix growing up I didn't think that that was the greatest choice for our bunch, and nearly all the non-pit bulls that came up on the shelter websites said that they were not for homes with small children.

I had images of the cartoon Sebastian and Bell in my head as we began to learn about the Great Pyrenees as a breed.  We liked what we saw.  We emailed the people with the puppies.  We drove two hours north west to their tiny farm.  They had three dogs, who we met, and a littler of puppies.  The people were incredibly nice.  The puppies were tiny little balls of fluffy white fur.  We paid a deposit and drove home.

On Halloween day Lily came home with us.  She was Patch's birthday present.

After we got through the puppy teething stage she was incredibly gentle with the kids, especially James.  He was her favorite.  He could take food out of her bowl and feed it to her and she would sit and watch him indulgently.

This summer something began to change.  If the kids were running in the yard she would get upset, like she thought that they were going to hurt themselves, and would lightly grab them by one arm and throw them to the ground.  For a while she wasn't allowed down in the lower yard when they were out.  But we worked on it and by fall she was out running around and playing with them on the grass again.

In the last few weeks something suddenly changed.  She started biting.  She was leaving marks.  She bit Patch and Sadie on the hands.

I made strict rules about food, since the problems seemed to suddenly revolve around food.  No kids around when her food was out.  No human food out when she was out.

Then she bit James on the hand.  James, her baby.  Because there was an apple in the room, that neither of them were eating.  And she bit Patch on the face and neck.

She didn't break the skin, thank goodness, but she left a nasty purple bruise and he was terrified of her.

We didn't know what to do.  We kept her completely separated from the kids, but I was on edge.  She could break out of her kennel if she wanted to.  She had before.  She was incredibly strong.  And on Sunday she began snapping at Paul and me when we let her in and out tried to let her into the house.

By Monday morning I was afraid of her when I let her out to go to the bathroom.

Now to back up, before this she was incredibly obedient, especially for a Pyrenees. When I told her to sit she'd sit.  She was cuddle and affectionate.  If she chewed on something she wasn't supposed to she would follow me around, putting her head under my hand like she was apologizing.  This transformation was sudden and unbelievable.  It was a nightmare.

On Monday morning we called the state Great Pyrenees rescue.  That night Paul spoke with the director.  He told her what had been happening.  We were dreaming of a farm somewhere without kids, where she could live out her days.  And then the news came and it was horrible...

We were the fourteenth call she'd gotten this year for the exact same condition.  All the dogs were from the same area.  She believed that someone was breeding dogs that shouldn't be, that something was wrong with a line of these dogs somewhere in the area and it's spreading.  Something was wrong with their brains.  Great Pyrenees don't do this.  They don't snap and start attacking humans.  They don't bite and especially not children.

She said that with the other thirteen dogs, the decline was rapid.  They became more and more violent.  One had burst out of its kennel as the owner walked by and chased him down and attacked him.  Then she snapped out of it and couldn't figure out what had happened, didn't seem to remember hurting him.

We needed to have her euthanized, immediately.  It was the only humane choice, she explained.

I sat at up Monday night crying and praying and wishing there was some other way.  We spoke to two vets yesterday.  The vets agreed, and said that she needed to be put down by animal control.

As I write this I'm crying.  I'm praying that we made the right decision.  But what other decision was there to make?  She's an enormous dog.  She could easily kill someone.  And how could we live with ourselves if we gave her up and she seriously injured or killed someone?  

But still I'm so angry and sad... and I keep thinking I hear her barking outside, and start to run to let her in before she annoys our neighbors... and then I remember.

I'm going to post my favorite pictures of her here, through the years.  The way I'm trying to remember her...

Please keep our family in your prayers.  This has been a tough week.