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.

Monday, November 14, 2016

A Quick Commercial Break with Maggie

I posted this on the blog Facebook page, but I wanted to post it here too!  Maggie and I did an interview for a commercial for the therapy program that we did at MSU and today I saw it for the first time.  She's so tiny!

This was filmed about a year ago, but if you see the Skype video that is briefly shown it's from when we first started the study when Maggie was three!  I can't believe it's been three years!

Sunday, November 6, 2016

Tessie: An Update

I thought that it was probably just her eye sight right up until the moment that we went through the list of milestones during her early intervention evaluation.  Or at least I hoped that it was. I wanted it to be her eye sight.  I wanted her to be a little far sighted and just need a cute pair of glasses that would solve the problem.
Sure, we'd have to probably replace them seventy times before she was two, but we'd figure it out.  Can you buy insurance for eye glasses?  If so we would have done it.  

When someone suggested that it wasn't her eye sight I almost exploded.  No, no, no.  Don't you know what it very likely is if it's not that?  I do.  

It's not that having a child with developmental delays, and in our family's case autism, isn't a blessing in many ways.  But the knowledge that you're child is going to face some pretty major struggles, in a world that refuses to accept and often fears them, is in some ways heartbreaking.  

Watching your child struggle to be accepted and even be the object of scorn?  It's hard to get past. And while it's the world to change I fear every day that it's not changing quickly enough.  In fact I know it's not.  

Parents please, please I beg you.  If you can teach your children one thing, teach them to kind to people who are different.  The world doesn't need more people striving to be famous or powerful.

Our world needs more people who are kind.  

Of course, nothing can be certain for a while yet.  There are no tests for autism before eighteen months of age.  But the red flags are everywhere.  

The first evaluation, quickly showed that something more than bad eyesight was going on.  It wasn't that she wasn't able to see up close.  It became abundantly clear as one and then two therapists evaluated her that she was avoiding all eye contact.  

Someplace in my mind I think I already knew.  

When she nurses she looks away.  When I try to catch her eye she quickly averts them and turns her head to the sign.  She smiles, looking just over my shoulder or, on a good day, at my forehead.  Not at my eyes.  If I catch her, move my eyes into her line of sight she quickly turns and squirms so she can't see me.  

Maggie didn't do this.  She stared at my eyes and laughed.  I've read about this, but I've never seen it first hand.

They rang a bell off to one side of her head.  She sat perfectly still.  They rang it on the other side.  Then on the first side again, closer.  It was practically next to her ear, and loud.  No reaction.  A loud banging side on either side and again she didn't even blink. This is... significant... I heard.  

How could it not be?  

As these therapists, who are James' therapists and who are good at what they do, worked for an hour to get her to do the most basic of actions for a baby her age, my heart sank.  And had I seen her demonstrate any of these actions?  Does she grab a toy?  Can she shake a toy? Does she reach for a toy or look at a toy?  Does she watch her hands or react at all when she sees herself in a mirror?   

In the gross motor category she knocked it out of the park, doing things in older categories, but in social communication she wasn't hitting the milestones in the one to two month category.  At four months.

She qualified.  I sat, talking about how she probably wouldn't qualify, and I totally understood that they wouldn't qualify her, after all how can a baby that's so little already have a significant enough delay, but she qualified easily,  over and over again in each category.  

When they left I brought up the ASQ Oregon site, which allows parents to take the Ages and Stages Questionnaire that our pediatrician's office uses online and get the results scored online.  The results came back as expected:

Your child's scores in the areas of (Communication,Fine Motor,Problem Solving,Personal-Social) are, at this time, below the cutoff and may indicate that development is not on schedule.

And there was another worry that had popped up.  She sleeps a lot.  Impossibly much.  Twenty hours a day.  That morning I woke her after she slept for thirteen hours, to make her eat and get ready for her evaluation.  

When the therapists left, having scheduled her first session, and while the boys played upstairs, I called the nurse's line at our doctor's office and left a long rambling message.  They called me back and agreed that our well baby check which was still two weeks off was a little too long to wait and scheduled us for an appointment.  

On November 2nd we went in.  The doctor came in and examined her and talked with me about what was going on.  I explained the results of the evaluations and what I'd noticed.  I told her that I'd thought I was just paranoid, because of what we've gone through with Maggie and James, but that now, with the evaluations I was beginning to wonder if it was something more.  She tried and tried to get Tessie to look at her, with little success.  Tessie glanced at her face once and then quickly looked away.

And then she said "I'm sorry, this is heartbreaking." and began to explain that they wouldn't be able to definitively test until she was eighteen months old, but that with the family history and significant delays it is likely that we're headed in the same direction, but that this is absolutely the earliest that we could have noticed and that she will receive the very earliest therapy possible.  

"You're doing everything right.  You're doing everything you can do.  Not much is available this young because the testing doesn't exist."

I was stunned that she saw what I saw.  I don't know why.  I was clinging to the idea that I was just paranoid.  I had convinced myself that the concern I felt when she was three weeks old and I would try to catch her eye and she would turn her head, was just an abundance of over caution.  After all three week olds don't usually make eye contact.  But they don't usually avoid it either.  

We started therapy this last week.  She's been referred to our family neurologist (who sees Maggie and James).

I am processing this all again, and in some ways it's easier and in some ways it's harder.  It's easier because I'm not afraid of who she is or who she will become.  Maggie is one of the most amazing people I know and she has taught me so much in her short six years on this earth.

But it's harder because I have a clearer idea of how the world treats people who are different than what passes for normal, and of the challenges that she will face in a society that is often cruel to those who are different.  When it's acceptable to publicly mock the disabled for their differing abilities and be defended for it, it's hard to feel confidence in the world these children of mine will be growing up in.  When people are praised for "terminating" children who have conditions that make them seem less than perfect, I fear for those children who grow up with similar labels and conditions.

And that is the part that breaks my heart.  

I haven't really paused since then.  I called Maggie's therapist and the friends we've made at the local university and everyone is brainstorming ideas for things that we can work on and ways to help Tessie move more easily through this world so that she can become the person that she is meant to be.  
But in some ways, this very real possibility has made these days sweeter.  I cuddle up next to her and kiss her head and smell her sweet baby smell and think of how easy it is right now, just to be, just to exist and savor every moment of the day.  

I don't need advice about "cures."  I don't need to hear about the latest diet, or have anyone use the word "recover" when speaking about my children.  They aren't lost.  They're right here, and they are every bit of who they were created to be.  

So we wait.  And we don't.  We're busy doing the little therapy exercises that a four month old can do and I try not to google the stories that tell me that studies have shown that a lack of eye contact in the younger siblings of older children with autism has been found to be significant at two months of age.  

Maggie adores Tessie.  And if Tessie follows in her big sister's footsteps I can only hope that she might have a little bit of an easier time with a family that has already walked this way before and will hopefully understand her more fully at a younger age.  

I'm not sure how to end this post, which has already rambled on for so long except to say that your thoughts and prayers are appreciated, in fact I'm certain the prayers of those of you who knew bits and pieces of what's been going on have carried me through the lows and highs of the last few days.  

Now to get ready to take these little ruffians to Mass.  

Last night Maggie (who asks every single day of the week if we're going to Mass) smiled when I said that tomorrow was the day and then said "Church.  Mass.  Jesus.  Doughnuts."  She giggled when she said doughnuts and then repeated it two more times.  

Maybe Maggie and Tessie will be two little mermaids in a pod.  Time will tell.  

Thursday, November 3, 2016

Mermaid Soap: The Greatest Invention Known to Mermaids

"If something were to ever happen to me, you need to know this."  I say the words and Paul shakes his head, but I continue anyways.  This happens a couple of times a year, when a daily ritual becomes such a big deal to Maggie that it becomes set in stone, a part of our day that simply can't be replaced.


 Every morning Maggie takes a bath filled to the brim with mermaid dolls.  I get the other kids dressed and ready in the bedroom and then she sprints in, half wrapped in a towel and excitedly proclaims "Mermaid Soap!  Mermaid Soap!" to the assembly of children searching for shoes and sweaters and that other sock that was in my hand three minutes ago.

"Dry off!"  I say and she repeats the words as she scrubs at her arms and legs with a towel.  "I can't put on Mermaid Soap if you're still wet!"

Then I turn and very carefully slip the jar of Vaseline and Crisco off of the window sill. I keep it hidden behind the curtain. The recipe was given to me by Patch's allergist when he was small and is simple.  It is 1 part Vaseline to 1 part Crisco.  He told us about it after we'd tried every over the counter eczema treatment available.

I'd slathered Patch in coconut oil and every natural remedy I'd heard of when he was tiny, but nothing worked until the doctor gave us that suggestion and I skeptically went to the store and picked up the supplies and mixed them together in the kitchen.

Suddenly he had the softest baby skin I'd ever seen.


So every year when winter arrives and dry skin comes with it, I put together the concoction again and begin to apply it liberally to try legs and elbows.

I have to keep it hidden though, to keep Maggie from covering herself in it from the top of her head to the tips of her toes (Vaseline and Crisco do not wash out of hair easily, if you've never tried it and were wondering).

"Mermaid Soap!"  I announce each morning as I put a generous ball of the moisturizer into the palm of my hand.  Now for the important part.

"Mermaid Soap for mermaid lips.  For mermaid words.  For mermaid songs."


After that it's time for the story.

"It isn't easy for mermaids to speak when they're on land.  It's not easy at all.  And so we have mermaid soap which makes it easier to mermaids to have words and sing their songs when they aren't in the water.  Mermaid Soap for mermaid words and mermaid songs."


I started doing this when her lips were dry and cracking about a month ago and we were battling every morning as I tried to apply chapstick.  When I began using "Mermaid Soap" she was still skeptical until I told her that they were for mermaid words and the story grew from there.

Maggie points to her stomach and then helps me cover her arms and legs in the ointment while I continue the story.  "Mermaids dry out when they're on land.  This keeps that from happening.  This keeps mermaids from getting too dry when they're out of the water."

"Mermaid soap!  Mermaid soap!" Maggie says the words happily then, after getting dressed hands me a brush.  "Mermaid bow?"


Yesterday when I picked Maggie up her therapy tech told me that she has been using so many new words, a statement I've heard almost every day lately.  I'm sure Mermaid Soap is only a small part of the puzzle.  Maggie has been working hard to make us understand her for her entire life and all the hard work she's put in is paying off.

But I can't help but think that Mermaid Soap plays a little role in helping the words come a little more easily but giving her a little extra confidence boost as she starts her day.

And Paul, now you have the script for Mermaid Soap Mornings... just in case.

Wednesday, October 26, 2016

On Locks, Pick Pockets, and Super Powers

I'm expecting to have pink eye just about any time now, and praying that I somehow manage to avoid it the way I somehow avoided the plague that is Hand, Foot, and Mouth disease that swept through our house.

I thought I might stand a chance at avoiding the miserableness that is conjunctivitis until a certain child, who may remain unnamed, was cuddling with me after her doctor's appointment and reached up rubbed her eye and then, with the same hand, reached over and touched my eye (before I even had a chance to lift my hand to redirect her or shout out a panicked "no!"). 

The seventy-five times I'd washed my hands since breakfast, in scalding hot water for longer than it took me to hum the Happy Birthday song, suddenly seemed rather pointless.

Kind of like 98% of the locks we've purchased in the last four years. 



Yesterday morning while I was getting ready I realized that the key to the downstairs outer doors was sitting on my bookshelf. 

You see, after Maggie defeated every type of lock on one wall of the lock aisle in Home Depot, we finally broke down and opted for double cylinder locks to keep our little eloper from venturing into the outside world on her own. 

The man who sold me the locks was pretty sure I didn't know what I was buying when I picked them up.  I knew that he wanted to save me (or more likely Paul) from a return trip to the store when I realized that the lock needed a key to open either side.  I reassured him that that was actually exactly what I wanted, but I think he still expected to see me back there later that day, getting normal locks that only require a key to get into the house instead of out. 

I'd been against double cylinder locks for a long time, because I honestly hated the idea of them.  But the alarms on the doors only gave me partial peace of mind, and once Maggie mastered all three of the locks on the front door I knew it was time to look into something else. 



Now, however, I love those double cylinder locks almost as much as I love the six foot security fence in the backyard.  I now know that I won't hear the alarm sound while I'm in another room changing a diaper.  So I carefully keep the key with me at all times and this new system has worked remarkably well. 

Until yesterday when I put the key in pocket and then heard Lily barking to come inside. 

I ran downstairs and put my hand back in my pocket.  The key was gone.  I backtracked.  Was it on the bookshelf that I remembered taking it off of?  No.  Had it fallen onto the bed?  No again.  Was it in the bathroom?  On the other bookshelf?  In the hamper?  On the floor? 

No, no, no, and no. 

As I searched Maggie drifted along after me, her little pink half pony tail bobbing happily as she walked. 

Finally I gave up and found a back up key and let the dog in. 

Five minutes later I heard Sadie saying "no, no, no" from downstairs.  Twenty seconds after that she was racing upstairs with my keys in hand to inform me that Maggie had them and was making a break for the outside world. 

Apparently pick pocket has been added to her (impressive) repertoire of skills. 


Maggie's super power is easily defeating every security measure I put in place.

But she wasn't done yet (for the week I mean... I'm not na├»ve enough to believe she's anywhere near to giving up her security system defeating skills in general...). 

This morning we were driving into town.  I'd loaded Tessie and James in the back and then snapped her into her seat with the new seat belt lock that one of her therapists suggested.  I noticed yesterday that she had cheerfully helped me hold the lock in place while I snapped the buckle closed, something that I'd found rather odd. 

Maggie doesn't usually like me to close locks.  Unless she knows that she can open them.

After months of practicing she sits very well in her booster, but suddenly, after a successful initial time period in the "big girl seat" she began unbuckling it when I stopped for more than 5 seconds, or any time Tessie cried.  The buckle lock was the perfect solution. 

The lock is plastic and rectangular with a series of slots that locks on over where the seat belt fastens, making it impossible to push the red button down without using a tool. 


It worked for a solid forty eight hours, but I noticed that Maggie was carefully watching me as I used the popsicle stick that came with the lock, to pop it open when it was time to get out of the car. 

As we reached Paul's office and I put the car into park I heard the buckle pop open.  I turned and saw Maggie holding her slap bracelet in her hand, looking entirely innocent as she took Paul's hand. 

"Did she just use that slap bracelet to open the buckle?"  I asked, wondering if I'd imagined locking the thing in place.  Had I been too distracted by the babies and forgotten to secure it in the first place?

I carefully made sure to secure the lock on the way home.  This time her bracelet was sitting on the front seat next to me, where it couldn't be used to open the lock.

I didn't count on her smuggling a back-up-spoon on her person, however. 


She waited until I'd parked the car in the driveway to demonstrate her new found skill.  As I lifted Tessie from her car seat I heard the buckle pop again as she used the spoon to press down the red button between the slots. 

At least she waited until we got home. 

And can I say that as she gets older I hope she uses her powers for good and not evil?  Because if six year old Maggie can break every lock at every hardware store I don't even want to think about what ten, or twelve, or twenty year old Maggie is going to be able to do. 

She is amazing.  And as annoying (and sometimes scary) as it can be trying to find a lock that she can't get through, I can't help but be a tiny bit proud of how good she is at figuring things out.  Although I may not feel that way if she graduates to actually being able to pick that double cylinder lock without a key.


Saturday, October 22, 2016

Tessie's Eyes

I was worried about Tessie.

I knew that Paul thought that I was crazy. 

"She doesn't look at me."  I'd been saying since she was a month old.  "She smiles, but she's always staring off over my shoulder."

"I don't see it."  He said. 


But I did.  I'd lean over her bassinet and try to catch her eye.  I'd cradle her in my arms while she nursed and she'd look past me, rarely making eye contact. 

Was I just paranoid?  I asked myself.  Yes.  Partially.  I mean, it's impossible not to be after the last six years.  I am especially alert when it comes to developmental milestones.  How can I not be?  But that didn't mean that something wasn't off, did it? 

Still, with the exception of mentioning it to Paul and the pediatrician at the one month appointment, I kept my concerns to myself. 

One day when James' physical therapist was here, Lily was barking not far from where Tessie was sleeping.  "Is she really sleeping through that?" She asked.  I said that she slept through everything.  Paul had used a screw driver and a hammer in the room with her and she hadn't batted an eye. 

I knew that she could hear, I explained, because sometimes the smallest sounds startled her, but by and large, extremely loud sounds didn't phase her. 

She suggested that day that I refer Tessie for an evaluation, at the very least to check her hearing across different wavelengths.  It could just be that she was used to loud sounds.  But it could also be a cause for concern.

In the days that followed I watched Tessie and continued to fret every time she didn't look at me as I attempted to capture her attention. 



The next week I took James to his early intervention playgroup.  Patch's speech therapist from a few years back was there and I asked her if she could hold Tessie while I signed us in.  I told her about the physical therapist's concerns and she continued to hold Tessie and walk around with her for most of the hour that we were there. 

At the end of playgroup she brought Tessie back to me and finally, and for the first time in the whole hour, Tessie looked at her face and smiled.  She told me that she thought an evaluation was a good idea, because of that lack of eye contact, and I knew that they were both right. 

When James' early interventionist came last week I made the appointment and this week she came out so that I could fill out the paper work and so that she could do the initial part of the evaluation and see if a further evaluation was warranted.  Throughout the hour Tessie seemed to avoid looking at us.  She was happy and calm.  She smiled now and then.  But she studiously seemed to avoid focusing on faces. 

I explained that this was entirely new to me.  Maggie loved smiling into our faces when she was tiny. 

She had me hold Tessie on my lap and try to catch her eye.  Tessie turned her head from side to side and refused to look at me.  We tried different angles but Tessie seemed determined not to look at my face. 

At the end of the hour the therapist told me she was pretty certain that Tessie would qualify based on her refusal to make eye contact.  She managed to catch her eye for a few moments, but then Tessie would immediately look away again.  We scheduled an appointment for rest of the evaluation and I continued to watch Tessie and wonder what was going on with her. 



On Thursday James had PT again, and for the second half of the appointment Tessie sat on my knee.  "She's looking right at me right now," his therapist said.  "This whole time she's been watching me and making great eye contact from across the room."  I brought Tessie closer and from a few feet away she smiled and cooed at the therapist.  "I wonder if it's just a matter of finding the right distance" she said. 

Last night, after failing to get Tessie to look at me for most of the day I put her down and stepped back.  When I was a little over three feet away I saw her face light up.  She looked straight at me and smiled and cooed. 

I stepped forward.  As I stood next to her bassinet her smile faded and she began to look around, focusing mostly on the light on the ceiling.  I bent towards her and there was no sign of recognition on her face.  I stepped back again.  At the same point, a little over three feet away from her, she beamed up at me, again focusing on my face as she smiled hugely.


Moving forward one more time to test the theory again I could see the moment when she lost me and began looking from side to side, clearly not seeing where I was. 

All day today the situation repeated itself.  When I'm near to her she smiles at my voice, but looks around as if she isn't seeing me.  When I take an extra step back she focuses easily on me and makes eye contact. 

And that explains why Paul kept saying she was making eye contact with him.  He's about a foot taller than me and when he stands over her bassinet he's a foot further away.  She can see him more clearly since he's further up, even when he's standing next to her. 

I still find myself surprised every time I move back into her line of vision and I can tell by her expression the exact moment that she sees me.  We were already discussing hearing and vision tests, but now that vision test most definitely seems like it will be a priority. 

Thursday, October 13, 2016

Happy 2nd Birthday James

He is my smiley, silly, cuddle bug. 

But he also has a habit of frowning at the camera, usually right before bursting into a fit of giggles.

Over the years though I've captured quite a few of his frowns and so today, on his second birthday, I had to share them with you.

Happy 2nd Birthday James!  We love you!



Wednesday, October 12, 2016

Patch's Stroller Life Hack


This afternoon as we headed to the zoo I had no idea that I'd picked something up at the store that would totally make Patrick's day.

It was a large stroller bag hook. 

My sister gave me one a couple of years ago, but I always forget to move it from one stroller to another, so when I saw one today for $5 at Walmart I thought I might as well pick one up so that each of the strollers can have their own hook.  When I unloaded the car I snapped it into place.

Patch saw it and gasped.  "Mommy!?!?!?!  Mommy!!!!!!  You got this for me?!?!?!  Just for me?!?!?!?!  For my birthday?  Is this my birthday present?!?!?!  Thank you Mommy!  Thank you!" 

You see, he thought that I had bought him his very own handle to hold onto the stroller when we were walking. 

Quite often he wants to hold onto the stroller bar that I push, which inevitably results in me tripping over his feet every time he slows down. 

This is the perfect solution.  He proudly held onto it as we walked around for much of the afternoon.  Sometimes he wouldn't hold onto it, but it was perfect for times when I wanted him right next to me. 




And that is Patch's great idea for the day.  I don't think I'll get much use out of the hook as a bag holder but I do think it's going to be used daily as a preschooler wrangling device.

Also here's Tessie being her little Pumpkin self.  I love October.