Tessie's First Week of School

I didn't think that this week would come for a couple more years, or at least that it wouldn't arrive for another year at the earliest. 

But then Tessie was accepted into an amazing preschool program. 

There are around a half dozen kids in her class who are on the spectrum. The youngest are two, and they go all the way up to five (those who are going into kindergarten next year). Each child has a therapy tech assigned to them for a few weeks at a time, so stays with them for the entire day. The techs rotate throughout the year, so that they all work with the kids.

This class is in a preschool with neurotypical kids and the neurotypical kids are also taught how to interact with kids with who aren't neurotypical. And it's sort of wonderful.

I first heard about the program, which is through our local university, early this year and then I went and read about it online, and then emailed to learn more, which was followed by phone calls and finally a tour to come in and see the facility with Tessie.

After going in I was so impressed with what I saw, that after an evaluation, when we were offered a spot, we enthusiastically accepted.

And that led us to this week.

And finally the first day of school arrived.

By the second day Tessie raced down the hallway, not looking back to see if I was there.

By the third day, when Nani and Bopa drove her because I had an appointment with James she said "uh oh, uh oh, uh oh" when they went in a direction down a road that she didn't think that they should be driving down, until they were back on a route that she recognized (I feel like she learned that one from a certain big sister).

But I was the most surprised by the phone call I got on the first day, when her therapist called to tell me that they just wanted me to know that they were putting her monitor on her and putting her down for a nap on a cot, because she was acting like she was tired.

I'd been certain that she wouldn't take naps at school, because she hardly takes them at home anymore, and has barely napped all summer.

She's certain that if she falls asleep, she's going to miss something exciting.

Sure enough when I picked her up I was told that she'd taken a nap and had woken up refreshed and ready to play.

I couldn't believe she'd gone to sleep somewhere other than our house. She won't even fall asleep when it's nap time at Nani and Bopa's house!

Yesterday I stopped by her school early for a meeting during school hours with all the other parents, to meet all the staff that we hadn't yet met.

Tessie was in a mood, a tech explained as I heard her come hollering loudly down a hallway in a herd of children.

There were two reasons, her therapist told me with a reassuring smile.

The first was that she wanted to be carried everywhere and they were asking her two walk like a big girl. She was not happy about that development.

The second was that if she was going to lay down to take a nap they asked that she lay down on her cot, not in the middle of the classroom where the other kids were working. Or she could go to the play area to play and do whatever she wanted over there.

Tessie wanted to sleep where she wanted to sleep, which apparently was not on her cot.

She was so furious that she stormed past me when I bent right next to her and said hello and didn't notice me until I leaned over and kissed her on the cheek after she'd settled down at a table and had started playing with some Duplo blocks and a tiny doll.

Then she looked up, shocked, and smiled and then pushed her forehead up against my face so that I could kiss her a second time.

And then when we left she made it exceedingly clear that she still expected to be carried.

Because at home she's definitely still the littlest and she's not quiet ready to just hold my hand and walk next to me like the big kids.

The best part of her morning, on her last day of the week, was when she got dressed.

As I slipped one of her new dresses over her head I told her that she looked like a princess.

She was absolutely delighted.

She is definitely following in the footsteps of her two older sisters in that regard.

And once she came home from school, without so much as a nap in the car, she was ready to go outside in the backyard, and run wild with the two boys, and Sadie.

And then she slipped quietly inside with Sadie and I found her fast asleep next to the couch, still wrapped in a rainbow of tulle, completely worn out from a wonderful, busy week.

The high point for me came midway through the week and I wanted to write it down before I forget.

On Wednesday when I was picking her up I paused to speak with her tech and Tessie fought to get down out of my arms.

She could see her siblings about fifty feet away on the school playground.

So I put her down. And I watched as she raced over to them.

Halfway there she stopped and turned and looked back at me. Then she turned back around and ran over to where they were playing and joined them and when she reached them she turned a second time and checked to make sure that I was still there.

I'm really hoping that this is a sign that she isn't going to be a runner and that maybe eloping won't be here thing.

Maggie never turned and looked and never checked to see if I was still there, she would just run and run and run (at that age I think she would have blown right past the kids playing).

So here's hoping that all these security measure we've put in place are only for one little runner and not two.

And now for a couple school related videos of my not so big girl:

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.

A Rant, An Update, and that time I almost lost my mind

I planned on writing an update the night after we got back from the appointment with Tessie's pulmonologist, but I couldn't.  I was too angry (not at her doctor).  It would have been a rant and besides, I didn't have anything to tell you.

So I held off, hoping that the upset would ebb.  

And it did until I called the office again today and got more news, or not-news.

But now I'm getting ahead of myself.

A week and a half ago I picked up Sadie from school early, along with Patch who was finishing up his day of preschool, and loaded them in the car alongside James and Tessie.  Maggie's BCBA had managed to get staff to watch her until 5 that night, but with Paul at his new job I was bringing the other kids with me, because I knew we couldn't be sure we'd be back in time to pick up the other two, even if they stayed in their school's after care program.  

Just before I got out of the car to pick the kids up, my phone rang.  It was Tessie's respiratory therapist asking if he could stop by the house to drop of the supplies I'd asked him for a week and a half earlier.  I suppressed a wave of annoyance.  No, I was on the way to see her pulmonologist at the children's hospital, I explained.  Would our usual Thursday time work?

It might.  But he had a question.  Had I let the monitor go dead?  Once? I said.  I thought it had gone dead once, when we had been driving a lot on a particular day the week before.  The alarm, for the battery, had sounded so I'd turned it off.  It was hard to remember in the rush of going inside and getting the kids out of school and signing Sadie out.

Well, he said.  When I'd taken the machine in (and picked up the supplies I needed, something that was obviously frowned upon) the memory had been blank.  Because, he explained, if it went dead it would erase all the memory.  

That would have been nice to know before now, I thought, with slightly more colorful language flashing through my mind.  I hung up the phone and took a deep breath.

It didn't make sense, I realized once I was off the phone.  I turned it off the moment it alerted me that it was getting low.  It wasn't actually dead.  The low battery alarm had sounded, but I always immediately plugged it in.  And when I took it in the tech told me that it was 60% full, not blank.  

But what could I do?

We drove an hour and a half to the children's hospital, stopping to eat lunch in the car along the way.  Then I unloaded the double stroller, loaded James and Tessie into it, and navigated our way through the garage and up into the hospital.  

I had my list of questions and things I needed to tell the doctor and after the nurse weighed and measured Tessie she asked if it was okay if she brought the kids three IPads loaded with games to play on and I nearly hugged her as I rushed to say yes.  

The doctor came in and asked me if things were going well.  I was momentarily confused.  Not really?  Honestly I wasn't sure.  I explained the problem.  Sometimes I feel like things are going very well.  We'll go a week with no alarms.  And then the next week we'll have two nights where Tessie's machine says she has low oxygen or is having apneas, every five minutes, for hours.  

But of course I wanted to know what the machine said.  We'd made the appointment for two months in the future so that the doctor would have the data she needed to make recommendations.

That's why we were there.  

That's the thing, Tessie's doctor explained.  They only had two weeks of data.  And that looked pretty good.  She only had three instances of low oxygen in those two weeks.  Admittedly three instances is better than 130 in one night, but also still makes me feel uneasy.

Any instances make me uneasy.

But we didn't have anything else to go on.

The other month and a half of data had not been transmitted.  

That doesn't make sense,  I said.  The respiratory therapist has come out to our house two or three times and I even took the machine in once when it said it was getting full.  I told her that and related what the therapist had said about the last week being erased.

The doctor disappeared and came back after talking to one of the clinic's respiratory therapists.  She said that their therapist said that the machines didn't work that way.  And that they'd put in an order (again) to get the information sent.  

She promised to call me personally when she got it, and we made the hour and a half drive home to pick up Maggie, before rushing to Sadie's ballet class.

On the way I called Paul and asked him to call me when he had a break.  He did and then he called Care Linc, the medical equipment company that was supposed to send in the information.  

First they told him that the information had been sent.  He asked for dates.  

Well, today was one date. 

Not today. Before.  He explained what the problem was.  

There were other dates, they said.  

Could he have them?

Well they didn't really have them.  Someone else did.  Someone who was there.  Oh look!  She left!  Someone was going to send the information last week.  But they were out of the office.  And the week before they almost sent it. But something happened.

Why yes, the person who had left would call him back as soon as possible.

Except she didn't.  The respiratory therapist did.  He called my husband to explain how it was all my fault.  There was no data.  Because I'd let the machine go dead.  It was all erased.  

Bull.  

Paul texted me the next morning and asked me to send him the make and model of the monitor.  I texted him a picture.  A while later he called.  He'd just gotten off the phone with the manufacturer and they said it absolutely would not lose any data because the battery had gone dead.  That was a blatant lie.

So I tracked down another medical supply company that comes out to the small town we live in.  And Paul called the insurance and explained the situation and they said that they absolutely supported switching immediately and not to turn in the old monitor until we had the new one.

And then I called the pulmonologist's office and asked for a new prescription for a new monitor.  And while I was on the phone with their respiratory therapist, and while she had Tessie's chart pulled up, I asked if she could tell me how the information they'd received looked.  I explained that Dr. H had said she would call me, but that I knew she was really busy and that these things took time.

There was a pause.  The files weren't there.  They hadn't been sent.  Oh, actually there was one.  12 days.  Of the month and a half they had sent 12 days.

Of me putting the monitor on and off five times a day for car rides and naps, and Tessie's poor little foot getting raw from the tape and bleeding, they'd managed to only successfully transmit about 30% of the data.

Which is when this post turned back into a rant and my week and a half of progress, cooling off, was completely undone.

I just can't even go on.

Deep breaths.

In other news, Tessie saw her neurologist today.  He's very pleased with her progress in her gross motor skills.  He was happy with the MRI results.  In another six months he wants to order a second MRI, just to make sure that the bleeding in her brain hasn't grown.  He doesn't think it will, but he wants to be sure.

And because we've noticed that Tessie tends to get clumsy when she's awake before she has apneas he gave me a lab slip to take her in and have a certain test done looking for metabolic problems (again) the next time she's very clumsy.  It will hopefully eliminate something called "intermittent maple syrup urine disease" which google tells me twenty people in the world have.

I feel like our odds are good.

We're still waiting on the insurance approval for the scary test though (that 1000 people in the world have... still fairly good odds).  Maybe it's a good thing that my frustration with the whole monitor information has kept me distracted from dwelling on that overly much.

Here's hoping the next company can get the data and actually transmit it to the doctor without all of this extra drama.

Because I'm sure I can find the energy to keep fighting all these extra, useless battles, but I'd rather not have to.  

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!

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).  

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.