Saturday, May 27, 2017

A Tessie Cold

Last week Tessie had a cold.


It wasn't a bad cold.  She didn't have a fever.  She'd have a few coughing fits a day, but they weren't bad and her nose was runny but not particularly stuffy.  She could suck on her thumb and still breath.

The first night the alarm went off, telling me that he oxygen level was below 89%.  I looked down and saw the red light on the right hand side over the falling number and picked her up.  She woke up and started to nurse and the alarm went off.  As she drifted off to sleep I put her back in her bed.  Within minutes the alarm went off again.

It happened a few times before I took the sensor off and got out a new one.  As soon as she fell asleep it happened again.  She had little coughing fits almost immediately after the alarm would sound.  When she'd finally drift off I could see that she was breathing a little fast, 31 respirations per minute, but not as fast as it sometimes is.

After a long night I figured that it was probably a fluke.  She has bad nights now and then, but they're less and less frequent.  If she has one bad night it's likely she'll go a week, or even two now, before she has another.  And it wasn't like she was having apneas.  She hadn't stopped breathing once.


The next night came and exactly the same thing happened.  This time I looked at her closely.  The oxygen monitor said her oxygen was in the 70s, but she wasn't purple or blue, which her pulmonologist had said she should be if her levels were really that low.  Again it went back up when she nursed and then began to go off over and over again when she'd go to sleep.

And then the night after that we repeated it for a third time.  I knew then that I needed to call the doctor.

We had an unusually busy day lined up.  Dropping off Sadie and Patch.  Speech and OT and then rushing Maggie over to her therapy place.  A couple errands and then picking up Patch and hurrying to a doctor's appointment.  As soon as that was over we were supposed to pick up Maggie and drive her back to next year's potential school for the second half of a speech evaluation.  That left us just enough time to get back to pick Sadie up when her school got out.

That meant that if her doctor wanted to see her it would likely be in the afternoon, and I would have all five kids.  Paul had court, so I was on my own.

And which doctor should I call?  I knew there was a good chance that the pediatrician would say "sorry call her pulmonologist."  I didn't have time to drive two hours each way to the pulmonologist's office.  Beside's wasn't this a cold?  Hardly worthy a trip to a specialist.  


I silently hoped that her pediatrician's nurses line wouldn't tell me to call the pulmonologist and I left a message explaining what was going on.

And they called back and said to bring her in at 3:45 for a 4 o'clock appointment.

Thankfully Paul got out of court early and was able to arrive at 3:44.  We hurried inside.

The pediatrician examined her and made sure that she didn't have pneumonia.  Her lungs sounded great.

And then he explained that while the sleep studies say that she only has central apnea, he suspects that there's more to it than that.  He thought that for whatever reason she didn't have the energy to breath because of the cold, so that even though she was just a little sick it was causing her to repeatedly stop breathing or breath too shallowly.


I asked if that would explain why she has more apneas when she's in the car, and he said that the position in the car seat makes breathing more difficult and that it was basically the same idea, that for whatever reason (he suggested mitochondrial disease again) when it's more difficult to breath she just doesn't.

I have noticed that on days when she's especially tired (like if she skips a nap) we're much, much more likely to have apneas all night long.  If she's well rested she usually sleeps soundly all night without a problem.


She's almost completely better and the last two nights she's slept peacefully without a problem.  But I'll admit I'm far more nervous about her getting sick now, if this tiny cold affected her so dramatically.

But at the moment she's back to bouncing off the walls.  Tonight she put her face in the water in her bath (on purpose) three times, and then laughed about how daring she was being.  And she's growing so fast!  Here's a glimpse of our big girl going on the swings today for the first time:

video

Wednesday, May 24, 2017

Molly Loves You and Other Amazing Words

Sunday night, Maggie had already gone to bed when Sadie's bedtime rolled around, but she hadn't quite fallen asleep yet.  She was wrapped up in a quilt when she looked at me and said "Molly loves you."

Molly is her favorite Bubble Guppy and "Molly loves you" is something she's begun saying that I've suspected for the past month or two is the equivalent to her saying "I love you."

"Mommy loves Molly!  Mommy loves Maggie!"  I said back as Sadie climbed into her bed.

Then Maggie paused, looked at me, and in a clear little voice said "I love you."  



It isn't the very first time she's said it, but it's one of the first time she's said it when she hasn't been echoing back the exact words that she's heard.  When she says "love you" when she goes to school she's basically saying "please go mom."  

There have been a few times, over the years, that she's echoed back, "I love you" after I've said it too. But this was the first time that she initiated saying it on her own instead of repeating it, which made it one of those super memorable moments that I want to store away in my memory exactly as it was.

Tuesday, May 23, 2017

Finally Family Fun Night


For most of the last decade, Paul was gone on Friday and Saturday nights.  Before Sadie was born he worked 48 and 72 hour shifts at a group home, which meant sometimes parts of weekends were free, but often times he was gone.

After that he began grad school, with a program that took him almost 300 miles away on weekends (besides working nights during the week).

Then law school began and between studying in the law library, and then working as a doorman the last two years of school on just about every weekend, he was hardly ever home on Friday or Saturday nights.  This last year, when he started his own business he kept working as a doorman on weekends.

I was pretty elated when he got the new job and I discovered that for the most part, on Friday nights, Paul will be home.



And so I finally declared Friday "Family Fun Night" and began planning.


The nights usually include a meal I know they'll like.  When I'm feeling really energetic I plan something that the kids can help make, like pizzas that they can decorate, or banana floats that they can help build.


 On other nights (like kebab night) everyone else was out in the living room while I threw everything together and brought it out.


Banana Split night, barely beat out Root Beer Float night as the kids' favorite.

It was unique in that instead of being dessert, the banana splits were dinner.  It only happens once, or maybe twice a year, but it's definitely a memorable night for everyone.  And it was fun to see which toppings everyone picked for their creation.


Every Family Fun Night so far has ended with a movie downstairs in the playroom, but some have included games too.  Like this wiggly worm ringtoss (it can be a challenge to find games all the kids can play):


Family Fun movie time has convinced me that it would be very, very nice to have a sectional down in the basement.  Because right now there's a huge amount of competition for the "best" spot on the couch.  And on the floor.


And I don't think I've ever been more grateful for Pinterest for ideas, even if our nights aren't quite Pinterest worthy in and of themselves.  They are definitely fun.


Monday, May 22, 2017

Flexibility and a Good Mistake


Last week I made a huge scheduling mistake.

It may not seem like much, but it had the potential to ruin our entire day, and throw the whole week out of whack.

Wednesday is our hardest day of the week, because Maggie has OT and Speech and then we rush over to her therapy center.  It isn't making it from one place to another that's a challenge (it's tight, but we have just enough time).  It's remembering that it's Wednesday and that we have to go to the autism center instead of the therapy center, before we've missed the early morning session.

I have an alarm on my phone to keep me from forgetting that it's Wednesday, after losing track of which day of the week it was more than once.


This particular Wednesday we made it to speech and OT, but when we arrived at the therapy center one of my favorite scheduling people looked up and spotted us.  "I don't have you scheduled until twelve today." She said and then I remembered.

One of Maggie's therapy techs had the morning off and they had called me a week earlier to let me know.  Scheduling had been trying to cover the spot, and thought they might have found a substitute and I'd been waiting to hear back, until I completely forgot that the day had arrived and I'd never gotten the call telling me they'd found someone.


This meant leaving the center.  The office staff looked at me anxiously.  We all knew how bad this particular schedule change could be.

Maggie loves her school.  She sprints in, greets her therapist and says "bye, bye, love you!" to me over and over again, obviously anxious for me to leave so that she can get to work (and play).  She giggles her way to the door every day.

The last time her session was canceled when we arrived she sobbed for much of the rest of the day.



She whimpered when I told her that I'd made a mistake and we had to leave.  She made a small sad sound as we walked to the car and as I strapped her into her carseat.  And I explained to her that I had made a mistake forgetting that she didn't have school until later, but that we were going to make up for it by going to do something fun.

After running a couple errands we went to the zoo.

At the zoo she continued to demonstrate how much she's grown in the last year.  I had to remind her every minute or so to stay with me.  About 80% of the time though, when I asked her to slow down and walk with me, she would.  The other 20% of the time we held hands as a reminder.

And she had a blast.


Letting go of her hand in a crowded zoo (there were five buses there and the parking lot was full) would have been unthinkable a year or two ago.  She has made such amazing progress.

And so that little scheduling error I made turned out to be not such a bad thing.  We returned to the center at lunch time, triumphant and when her favorite therapist texted me to ask how she had done I was able to text back a beaming picture of her having a blast on our little impromptu field trip.

No, it wasn't such a bad mistake after all!

Sunday, May 21, 2017

A Tessie Update: The Bad and the Good

I just about had a nervous breakdown in the kitchen when I opened the packet that had arrived from our insurance company with Tessie's name across the front, even though I knew what it was already going to say.  Only denials are that thick.  They don't send out twenty pages of explanation when they tell you that they're covering something.  



When I read the reasoning I was even more enraged.  The insurance company had determined that testing Tessie for an abnormality in the PHOX2B gene would not change her treatment.  Therefore it is considered unnecessary.  

Not change her treatment?

I'm surprised a blood vessel didn't explode in my brain.  

Through all of this, for the most part, I feel like I've stayed pretty calm.  Even when I felt like I was having a panic attack in the shoe aisle of Walmart when I got a call from the pulmonologist's office telling me that the company (who I'd talked to on the phone and who had assured me that they had baby apnea monitors and also would service the area that we live in) had faxed back the monitor script with "not in stock" written across the top, it was more of a shaking hands, stabbing chest pain sort of thing, while I stood there wondering what to do next.  

This was a shaking hands I want to throw something across the room (like the letter if it was only heavier) sort of anger, that I struggled to resist.

Now since you likely haven't talked to a dozen doctors about this gene, let me explain.  

The standard treatment for Congenital Central Hypoventilation Syndrome, in a baby, is being put on a ventilator every time they go to sleep.  According the her pulmonologist and the PICU doctor that first saw her when she was admitted to the hospital, if a baby has this gene they usually require a tracheostomy to ensure that they don't stop breathing and fail to start again.  

Tracheostomy (or one of the other treatments) versus no tracheostomy but continued monitoring is kind of a huge difference in treatment in my mind.  

This is the thing that we've been desperately hoping that she doesn't have.  Out of all the causes for central apnea this was one of the very worst.  This was the reason I couldn't really relax when the MRI came back normal.  Because which was worse?  Getting the results for this test, and finding out that she doesn't have the mutation, would be an enormous relief.  

And while she has been having less and less instances of apneas and low oxygen levels, it still happens and her geneticist was adamant that this test needed to be done.

So we began sorting through the packet and looking at the appeals process that Paul would begin to undertake.  I wondered if the insurance company would change their mind when they realized that Paul, who was taking over challenging the refusal, is a lawyer.


At night when I laid in bed and worried, I wondered if the insurance company had refused the blood test because they didn't want to pay for the treatments if it came back positive.  A cynical part of mind wondered if refusing the test, which leads to no treatment, which increases the chances of an infant who has this gene dying, doesn't make more sense to a company who's looking at the bottom line.  Rather than pay for a tracheotomy and ventilator just don't pay for a test and you don't have to worry about covering the rest.

I like to believe that even insurance companies aren't that horrible, but experience makes me wonder.


And then the call from the geneticist's office came.  She said that Ambry had agreed to cover the entire cost of the test.  I almost fell over.  Had she called the wrong family?  That isn't the name of our insurance provider (thanks McLaren, in case you were wondering).

It took me a moment to remember the request form that had accompanied the other papers that I'd signed that asked for the genetics company to cover part, or all, of the test if our insurance company refused.

I cannot even describe what a relief it was.

It didn't matter if some paper pusher in an office somewhere had been ready to deny potentially lifesaving testing, and as a result treatment to an otherwise healthy baby who happens to stop breathing and sometimes not start again, because the test company had saved the day.

The doctor's office explained that they would be sending out the sample collection kit, and at what time to go to the lab to have it taken so that it could be sent out immediately by FedEx.


And Monday morning we did just that.

On Friday the genetics company called and told me that they had received the sample, that again, the cost would be zero, and that they would begin processing it now.  It's estimated completion date is June 16th, which isn't bad for this sort of test (Maggie's genetic tests took about three months to come back).  And I thanked the man who called profusely and told him what a huge relief it would be to know once and for all whether we had to worry about this.


And that is the latest.  Hopefully the apneas continue to grow fewer and fewer until they're gone altogether.  She's been doing so good for the last few weeks and then last night the alarm went off over and over again, telling us her oxygen level was between 87 and 89%, until I picked her up and laid down next to her and read so that I wouldn't fall asleep and would be right there when it went off again.

We'll keep praying that this test, like the heart and brain tests, come back normal, or at least normal enough to not be a concern.  Hopefully it will only be a few more weeks before we know.

Saturday, May 20, 2017

Finally Laid to Rest

In November we began making trips to our local Catholic cemetery.  

It was still fairly warm at the beginning of the month and we had a large break in the day between the time I picked up Sadie and Maggie from school and the time when Paul would meet me and take the kids home while I took Sadie to her ballet class.

I'd always wanted to do something to set the month that begins with All Saints and All Souls Days apart, but getting out of the house with all the kids on my own meant it was something that was put off, for years, until this year when we were already out, in the car, and it occurred to me that going to the cemetery and walking around and saying a rosary might be a good way to mark this time of year when we especially remember the souls of those who have passed from this life into the next.  

The idea was met with unexpected cheerfulness from the kids who thought getting outside in this wide open new space was a great idea.  The first time I did it I struggled with logistics, but over time we got better at it, and when it was very cold we would drive slowly in the car, past the stations of the cross and the large rosary stones, and pray with the windows rolled up and the heat blasting.  

The visits didn't stop at the end of November.  We didn't make it every week, but at least a couple times a month we would go.

And all the while an idea was growing, pressing in my mind, of something that we needed to do.  

Christian Athanasius was our tiny second trimester baby who was born into heaven in 2011.  He was cremated when we lived in Florida, but I couldn't bear the thought of having him buried there, so far from us, knowing we would rarely, if ever, be back.  


Then we moved to Michigan in 2012 and Paul was still a student.  We liked Michigan, but did we really know where we would end up?  

We would bury him soon, as soon as we knew where we would finally be settling down.  

Then Paul passed the bar.  And we moved into a house we loved.  

But life was busy.  So very, very busy and time began slipping by so fast.  Last year we had some 80 doctors appointments and well over 300 therapy sessions and there was hardly time to think.  And how much would it cost?  I knew from a friend that some cemeteries do charge to bury tiny babies while others don't.

Still, as we went to the cemetery each week the idea grew until in January when I brought it up again and we went to our priest and spoke with the people at the cemetery and began the process of getting the funeral home to fax up a death certificate, because the one I have is still tucked away somewhere and I couldn't find it since we still aren't entirely unpacked from last years move (the challenge of moving while 9 months pregnant and then unpacking while hardly ever home).  

On March 3rd we made the trek out to the cemetery.  It was a cold, windy day, and the kids were bundled in their snow clothes as we piled out of the car and waited for the priest from our parish to arrive.  

Then we walked to the small section of the cemetery known as the baby section.  And we finally laid Christian Athanasius to rest.









A lady who works at the cemetery helped us wrangle James, who refused
to hold my hand but proudly held her hand while crossing the street to the site.



It was a beautiful service and the words struck my heart, so strongly and yet so differently than I'm sure they would have if we'd managed it five years ago.

At the same time it was such a relief to finally have it done.  

Now when go  to pray the kids were excited to visit the spot where we had officially said goodbye to Christian.  

We stop and bring flowers and then walk down along the river and pray and the boys point out every balloon and flag and new bouquet of flowers that catches their eyes.  They talk about having a brother in heaven.




After persistent questions about why Christian's tiny space wasn't decorated we went to Hobby Lobby and fixed that as well.



And I began to stow away money in a little box, until we finally had enough to go back and buy a grave stone.  The day the proof arrive we confirmed that it was what we wanted:


We went back, over the next month, waiting for it to arrive.  And finally, on Mother's Day, it was there:


Seeing it, having a place to visit and knowing that he had been buried has been healing.


I can't help but feel that the gift of going to pray for the souls of people we've known and loved, and friends of friends, and all those who've gone before us, has given me a greater peace than I could have imagined possible back when I was writing about saying goodbye to Christian and the health problems that followed back in 2011.

Sunday, May 7, 2017

How Did You Know and A Few Good Tools for Getting Help

"How did you know?"  This question is often asked by parents who have witnessed behaviors or missed milestones who aren't sure quite how to proceed in figuring out if their child needs more help, or even if they might land somewhere on the spectrum.

First let me share the tools that I've found helpful, and then I'll get into answering the question above a bit more thoroughly.


I am a big believer in parenting instincts when it comes to something being not quite right.  And over the years I've found a few websites that can be really helpful in helping parents sort out whether or not things are outside the range of normal, which is really quite a large range, although not so large that some of us don't find ourselves, or those we love quite outside of it.

The first website that I go to allows you to take a test called the ASQ, online.  The ASQ, or the Ages and Stages Questionnaire, can be extremely helpful when a child is missing key milestones.  I first took it for Patch when our pediatrician's office used it before each Well Child check.  I quickly realized that it was a very valuable tool.

In my experience it has been amazingly accurate at raising red flags when and where they need to be raised.  And the best thing about the ASQ Oregon site is that it tells you where there are delays and allows you to print out your results and take them to your doctor to say "look, I was worried so I filled this out and these are the results."


It helps me explain exactly what's going on in a way that is easy for my doctor to understand, and our pediatricians have always felt that that test is a solid indicator for sending the kids on to the correct testing with other therapists or specialists.

The second test is the MCHAT.

The ASQ can be given to babies.  The MCHAT is for toddlers who are at least 16 months old (the ASQ can be given to toddlers too).  When you take the MCHAT online, like the ASQ, the results will let you know if there are concerns and you can print the form and take them to your doctor.

Having red flags on the MCHAT doesn't mean your child has autism, but it is a good starting place to get answers.  Maggie had a ton of red flags and she is on the spectrum.  James had five (which alarmed his developmental pediatrician) and his therapist and doctors are extremely pleased with his social communication skills at this point and if his extreme articulation of every feeling he has is any indication I'd be rather surprised if he ends up being on the spectrum.


Those are my two favorite starting points, along with finding a good pediatrician, preferably one with experience in developmental delays.

It took us a long time to find a doctor that was good for Maggie.  At first we just went to the local pediatric clinic.  We quickly realized that this was too hit and miss.  On the one hand we met the doctor who told me "I am a hundred percent certain that your daughter is autistic" there.  She was amazing.  But once she moved on I had a doctor ask "what's OT?" when I was explaining the therapies Maggie was in and another tell me that nothing could be wrong with Maggie (who'd been running a fever for a month and a half) because she was too energetic.

We realized that we needed to find a doctor that understood autism, and who could see past the fact that Maggie could go from sleeping twenty two hours a day with a fever at home and not drinking any liquids for two days, to bouncing off the walls of a waiting room, because she has that sort of endurance when she's super stimulated.


The other starting point we've used is directly contacting our state's Early Intervention program.  With Patch, the doctor contacted them for us.  With James and Tessie we were already in contact with Early On (the Michigan program) because we had an older child in the program, and we made the referral ourselves (Tessie was actually spotted by three different therapists who suggested that I make the referral because she was so unresponsive when she was 1-6 months old).

Early intervention can be huge.  Honestly I would rather take the chance of being overly concerned and be told that everything is fine, then miss a problem and have to deal with more therapy later on.

In a few months James will be graduating from all forms of therapy.  He's been doing PT since he was seven months old (he couldn't prop sit on his own at ten months).  And I credit the hard work from his early interventionists with the fact that I'm going to have far less appointments in the future than I would have if we'd "waited to see" what was going to happen.


He's worked really hard to get where he is and it shows.

Hopefully you'll never have to use any of these resources, but if you do it's good to know where they are.

As to "how did you know?"  That's trickier.  I didn't for a long time. I thought that we had late talkers.  Maggie made eye contact with me constantly.  She didn't maintain eye contact, but she made it.

For us the symptoms were specific, but I seldom see her when I see those "what to look for" lists.  She liked spicy foods and strong flavors.  She didn't appear to feel pain, especially when she was really hurt, and her responses to pain were inappropriate.  When she was struck by a kid swinging and thrown about ten feet, she jumped up, giggling.  She was very cuddly, but she always wanted her skin covered, usually in a sleeper, because light touch hurt.  She wanted to be held and squeezed tightly.  She never stopped moving.  She broke everything, usually without meaning to.  She was incredibly strong and incredibly coordinated.  She made high pitched squealing sounds.  She guided my hand to get things she wanted, and to point to things (once she got older).


She never rocked or flapped.  She was incredibly cheerful and happy most of the time.  She pointed.  She made noises to get my attention.  She played with other children.  And she always noticed if someone else was upset and would come over and try to cheer us up.

Perhaps the biggest red flat though, was that she "had no tether" as James' therapist calls the thing that keeps him near me when we're out.

When I'm out walking with James I rarely have to worry about him going far from me, because I know that he will stay right next to me if he's out of his stroller.  Usually he'll say "Hold hands!  Hold hands PLEASE!" if I'm not holding his hand.

It is amazing to me, and fantastic.


Maggie on the other hand, had no tether from the start.  Once she was old enough to crawl she was crawling away without looking back.  And once she could run?  We were constantly chasing her down, making sure she didn't sprint into traffic.  It was terrifying.

I'm not sure my answer to "how did you know" is all the helpful because the saying "if you know one person with autism, you know one person with autism" is so incredibly true.

And that is basically the guide to the tools that I use when I have questions and the answer to the question of how we knew, or really, all the things we missed for quite some time until her pediatrician pointed it out.


In Tessie's case, being able to use these tools to express what was going on is what got her sent to the neurologist that ultimately realized that we weren't looking at a developmental delay (at least on its own) but that there was an underlying medical problem for her missed milestones, leading him to find the central apnea that had her so exhausted she had no energy for anything else.  And if the number of times her monitor have sounded telling us she isn't breathing are any indication, that may well have saved her life several times over.



If you have any questions I can try to answer them, and if I can't there are usually other people in the  comment section with invaluable knowledge that can!


All of the photos in this post are of Maggie.  I used them because one thing I commonly hear is that if a child is happy and looking at a camera they obviously aren't autistic.  That has never been our experience.  Maggie was a challenging toddler, yes, but she was always extremely happy.  And in my experience many kids on the spectrum are pretty curious about electronic devices.  Looking at my phone that I'm taking a picture of her with is very likely to happen, possibly because she's plotting how to swipe it to watch Bubble Guppies and look at pictures of mermaids.