Monday, January 16, 2017

Tessie

Today was her neurology appointment.

I didn't learn anything new.  She has central sleep apnea and we should be hearing from her pediatrician in the next couple of days and will learn what is going to happen next to deal with keeping her oxygen levels up at night.  

The results from the last test indicated that further testing needs to be done to check for mitochondrial disease, and of course that hasn't changed.  

Her oxygen levels at night are falling too low, since for whatever reason her brain stops telling her to breath, and he believes that the pulmonologist that her pediatrician will likely refer her to will put her on oxygen at night.

I will feel a hundred times better when that actually happens.  


We're still waiting for the MRI to arrive to see if there are any answers there.  He's particularly interested in her brain stem since that's responsible for controlling breathing.

When we were walking out he said that if she hadn't been doing so much better today (which mainly meant being awake and staying awake longer, although she was showing off her gross motor skills too) he was going to have her admitted to the hospital.

But because she was much more alert and played the whole time instead of passing out halfway through the exam she got to come home. And for that I am very thankful.  But I'm also unnerved when I think of how much she was sleeping before and how that was likely because she wasn't getting enough oxygen.


And so now we wait on the results from a new list of tests to see if they offer any new answers.


Thankfully she has been more wakeful and is my super cheerful, strong baby who's working on crawling.


Thank you for the prayers.  If you have a moment to say a prayer that the next round of blood tests goes smoothly tomorrow we'd appreciate it.  I was supposed to take her tonight, but the sidewalks were so icy when we came home from ballet that Sadie and I could barely stay on our feet, so tomorrow it is. But taking Tessie to blood draws is one of my least favorite things.

Saturday, January 14, 2017

On Trips and Tests and the Unexpected

We were in St Louis last week for MRIs, and after a long unsuccessful night trying to get Tessie to sleep through the test we'd nabbed a few hours of sleep in our hotel before heading over for a morning of behavioral testing. 

When Tessie was around three months old, when the concerns I'd been having since she was around three weeks old began to become apparent to everyone around us, I basically managed to deal with all the feelings that I was having by staying busy.  That business took the form of reaching out to just about everyone who had worked with Maggie over the years, to ask if they had any ideas.

"What would you do?" I asked over and over again, "if you had a three month old with a family history of autism who was actively avoiding eye contact and failing to respond to sounds?" 

She was practicing with ear plugs to get ready for the MRI.
One of our favorite places, the Autism Lab, came up with a list for us of studies that might be helpful.  I plucked three studies from the list and contacted them, unsure if I'd hear back.   After a few days of phone tag and emails I realized that all three studies were going to happen.

Now I had no grand illusions about what these studies meant for us.  I knew that the conclusions from these studies were unlikely to directly benefit Tessie or any of my kids.  But I also very quickly realized that the tests that were done could be helpful going forward, because we live in a world where wait lists are long and they can be even longer when insurance companies have to decide whether or not they're as necessary as the doctors say they are.

Besides that, I'm also nervous going forward about the state of insurance coverage for people with disabilities and so quite suddenly this last fall it became very worth it to travel halfway across the country to have tests done, if it meant those tests were free.


So we flew to St Louis to participate in a large study being conducted by multiple universities, after hours on the phone with the people coordinating the study for Washington University's portion of the study.  The flight and car and hotel were all arranged for us by the study coordinator, and thankfully even gas and meals were covered, and so on Tuesday, Tessie and I set out, flew down to Missouri and after checking in to our hotel and having dinner we went back to our room to wait.

A little before nine we headed to Barnes-Jewish Hospital for the first night of testing. 

For ten days before the study Tessie had been listening to MRI sounds and sleeping soundly through them.  And she's such a sound sleeper, sleeping through dogs barking and her siblings loud playing, and even Paul hammering and using a screw driver in the same room, that I wasn't worried at all about her sleeping through the MRI. 

But she wasn't having it.  She wanted to look at the machine and while I got her to sleep five times she wouldn't stay asleep.  By the time we left, a little after midnight, I was worried that they'd flown us down for nothing. 

This is how wide eyed she was as we left the first day of testing.  After midnight.

The next day there were more tests and I'd been so confident that Tessie would sleep through that first MRI and that we'd be back at the hotel at no time, that I'd chosen an early morning time slot for behavioral testing. 

As I was getting ready to go I missed a call from Paul.  When I called him back I learned that Tessie's Godmother, an amazing woman who had been battling cancer, had passed away (please pray for the repose of the soul of Elizabeth!). 

We didn't have much time for the tears that were freely falling as we hurried back over to a new building near the hospital and went inside for the next round of testing. 

I set down my bag in the small lobby and removed my phone from my pocket and set it on the table.  The office was small and the front door was locked and we were the only ones there.  We were about to go into the testing room when the woman administering the test paused.  "Do you want to bring your phone?"  She asked.  "In case you... need it?"  I said something about feeling kind weird not having it on me, and shoved it into my pocket. 

About an hour into the tests my phone vibrated in my pocket.  I ignored it.  I don't take calls when I'm with therapists or doctors, unless I'm expecting an important call from another therapist's/doctor's office. 



The phone rang again.  This time I pulled it out of my pocket and glanced that the number.

It was a Michigan number and it wasn't one that was programed into my phone.  I asked if it was okay if I answered, and she nodded.

I recognized the voice immediately even though I've never spoken to the kids' neurologist on the phone.  He sees Maggie and James and now Tessie and I usually see him for someone monthly, or every other month. 

Before he said anything I knew it couldn't be good.  He was calling himself.  He has never been the one to call me.  For MRI results, or EEG results, or abnormal blood tests it's always been a receptionist or a nurse.  He had ordered blood tests for Tessie because she was sleeping so much.  Twenty hours a day at four and five months old.  Hypersomnia, said the words printed at the bottom of the paper they'd given me the last time I left his office.

I gripped the phone and waited as he began to explain what the recent slew of test results had told us.

The test results were not normal, he explained.  Did the person who ran the test tell me anything, he asked?


I thought back to one of the oddest conversations I've ever had in my life.  "Did you see anything unusual?" I'd asked as we'd gathered up our things to leave.  "Well, the pediatric neurologist has to look at it." She had said "But don't worry.  Lots of babies have breathing problems and outgrow them."

At the time I'd hoped that meant she couldn't tell me anything and that it was just an awkwardly worded reassurance.  It wasn't.



The sleep study told us that Tessie has Central Apnea.  For whatever reason sometimes while she's asleep, her brain stops telling her body to breath.  And, he explained, they were concerned that she wasn't getting enough oxygen.  More tests would need to be done and she may need to see a pulmonologist. 

I took a deep breath and thought of the three doctor's appointments where I'd said I was afraid that she had sleep apnea, that it seemed like she had stopped breathing in her sleep and I would put my hand on her chest and it would be still and I put my finger under her nose and there was no breath and that I panicked as I touched her forehead and she'd made a huge gasping sound, but the repeated answer had been that her breathing was probably too shallow to notice and she was fine. 

Which was a perfectly reasonable answer because apnea is incredibly rare in full term babies.  I don't blame them for not catching it because from everything I've read it isn't common in babies like Tessie.

But it was also wrong. 


I thanked God silently that the neurologist had said "Do you want to go on guessing or do you want to know?" when I'd told him what the other pediatricians I'd asked about it had said each time I'd brought it up at her regular well baby checks (it had happened three times that I had witnessed).

He went on talking.  There was more.  The results from Mayo Clinic for the amino acid and organic acid were back.  They were abnormal.  They suggested mitochondrial disease and would require more testing.  Could I take her to the hospital there?

"Do I need to do this right now?" I asked.  "Because we're out of state.  Is there any way it can wait until we get back?"  He had me write everything down that he had said to give to the doctor I was about to meet with and then he made me promise to call the office to schedule and appointment and speak with him the minute we got back to Michigan. 

I put down the phone and repeated his words to the test administrator.  She texted the doctor who runs the study and told her what was going on and she came up and I repeated what he'd said, and she explained a few things and said that she would tell her staff that they were to stay all night if necessary because we now really needed the test results. 

The last test was a little screen in a dim room that tracked Tessie's eye movement while she looked at pictures and spinning graphics and then we were on our way, free for the afternoon, until it was time to be back at the hospital at nine. 

My head was spinning.  I took Tessie to the zoo and we walked and walked and walked.


And then we went back to the hotel and lay in the dark room until dinner time and I tried not to google, but did and discovered a study where they found that most people with Mitochondrial Disease apparently also have Central Apnea.

When it was dark we went back to the hospital.



It took longer than usual for Tessie to fall asleep, but she seemed more comfortable in the MRI room.  She had ear plugs in her ears, with tiny pieces of tape over them, and after two attempts at getting her to stay asleep she was wrapped in a blanket on the MRI board with huge ear protector ear muffs over the ear plugs and towels all around her head to keep it still. 

I sat and stared at her chest.  In the half hour that she laid there, waiting to be in a deep enough sleep for the testing to begin, she stopped breathing four times.  And I held my breath with her, watching for her little chest to begin to rise and fall again, each time that it happened.

She went into the MRI tube and I sat in the rocking chair I'd been rocking her in and prayed and gasped every time her feet moved and then prayed more that she would just stay asleep so that they could finish the scans. 

Forty five minutes after she went in she started to kick her feet, but apparently she stayed still enough that the scan was able to be completed. 

They brought her out and she opened her eyes and grinned at us.  The guy who was doing the MRI said "Well, that's a first.  They always scream." as she beamed up at us.


And then we were on our way back to the hotel, a little after midnight, to sleep and get ready for our flight the next day, knowing we'd be back before very long because this study is ongoing and our next trip is at either nine or twelve months.

She's going in to see her neurologist on Monday, which was the first appointment they had with him and I guess we'll find out what's next then. 

In a way I've felt like we're exactly where we need to be as this has unfolded.  I was so certain that every test would come back normal, just like they all did with Maggie (although Maggie has never had any of these tests done, which does have me wondering...).

Your continued prayers are hugely appreciated. 

Friday, January 6, 2017

Water Words and Other Mermaid Triumphs

This morning I was helping Maggie get dressed and she started cracking jokes.  

"Water sock?"  She said the words and then waited for me to repeat them back as she stuck out her foot and pointed her toes as I helped her with her sock.  Water sock is a spin off of a joke that she shares with one of her therapists.  

A couple of months ago she spilled water on her shirt.  She was about to get upset when her therapist said "water tummy?" and instead of being upset about her wet shirt she started laughing hysterically.  

The word water, like the word mermaid, is often used by Maggie as an adjective to mean good.  "Water baby?" I asked and she glanced over at James.  "Water Sadie!"  she said and when I said "Water Mommy?"  she responded quickly with "Water Patch!"  

She spent the rest of the time getting ready randomly naming things as being "water" and happily left for school with Paul when he went to work.  


But the biggest gains of the last few days happened when she was at school.  When I picked her up yesterday I learned that she and a few of the other kids had been going to one end of the playroom and counting to ten and then running together to the other side of the play room, spontaneously.  One of the little boys had put his arms out afterwards and she had hugged him (not too hard, they said).

Today I heard that she'd initiated a game of tag, played with another little girl for thirty minutes on her own, and that she'd played another game of tag with another little boy and had called him by his name all without being prompted (and they hadn't even known that she knew his name).

But my favorite part of the day came after we picked Maggie up from school and Sadie realized that they were both wearing their new silver sparkly shirts.  She told Maggie that they were both wearing "Water shirts" and Maggie was pretty happy about that.  In fact, they both were (poor Sadie was home recovering from the most horrible not quite twelve hour stomach bug ever).

And they were happy enough that they even made faces when I told them they could be silly for a picture:


And now for one of my all time favorite Maggie videos.  I've only watched this about a hundred times this week.

I love it when she sighs and how she looks over her shoulder at her work:


video

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.