Category Archives: Medical Updates

SOME of what it takes to care for Evie

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I saw this link to a care map on a blog that I follow.  I’ve adapted it to illustrate the points that I am trying to make.

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I know that for a blog called, “Love Explosions”, it sometimes feels more like anger explosions.

I’m sharing this,not to try to garner sympathy.  We don’t want or need sympathy.  We are very happy most of the time, contrary to what it might seem like when you read my blog.  I’m sharing this so that you will have a tiny bit of understanding about what it takes for us to be a family.

About our Family:  We live in Vermont.  My husband, Scott, travels about 80% of the time for his career.  Out of the state.  Usually just during the week.  But sometimes it eats into the weekend.  I (Beth) take care of an adult, in our home, who has developmental disabilities.  This is more of a joy than a job but it also comes with responsibilities that cannot be ignored and coordination issues of its own.  We have two daughters, Evie, who is six.  And Maxine who is three.  My mother, Alison, lives with us in an inlaw apartment in our home.

Evie goes to school Monday through Friday from 8:15-2:45.  She does adaptive swim on Wednesday mornings, before school, and Friday afternoons, after school.  She needs more outside services than she is getting.  For reasons relating to insurance, availability, scheduling, and Evie’s quality of life–not overscheduling her, we are not currently getting all that she needs.  You can see, on the map I made, all of the things she really needs.

Maxine has a life too.  I stay home with her and she goes to a few classes: dance, gymnastics, and swim twice a week with Evie.  And she is a pretty demanding little bugger.  She, like any three year old, does not just want to sit in the house and watch me perform daily living tasks.  Nor should she have to.

During the week, I ideally, work out three times.  This almost never happens because my kids’ needs come first.  Other than occasional doctor or dental appointments, I don’t schedule anything that relates to myself.  Not because I don’t want to, but because I can’t keep up with the three workouts a week that I consider most important as it is.  So yeah, I don’t really have a personal life.  I’ve let most of my friendships go because I don’t really have the time or energy to be a good friend.  I’m mostly okay with my personal situation right now and know it will get better as Maxine gets older.  I do feel a burning need to fulfill another part of my life–which is contributing something significant for the population of people to which Evie belongs.  That cannot take a back burner.

On the weekends when Scott is home, I catch up on sleep.  Evie has sleep disturbances which often keep me awake and I have periodic bouts of insomnia. I also spend a lot of time playing catchup on household chores, paperwork, laundry, email correspondence, etc.  And of course, we spend time doing fun stuff as a family.

We do have help.  We have a fabulous babysitter, Heather, the only person outside of our family that I trust to take care of Evelyn while I am not home.  We have a housekeeper who comes once a week.  We have the driveway plowed, etc.

We have appointments for Evie coming out the wazoo.  They often involve traveling to NH or Boston.  They often have to be rescheduled because of weather, illness, other life events.  Evie has a difficult time sleeping in places other than her own room.  More than her normal sleep difficulties.  Appointments are a disruption in Evie’s routine and they can throw her off for a week.

I feel like I spend half of my life on the phone talking to insurance, scheduling appointments, canceling appointments, getting support/advice and arguing with people about any number of things relating to Evie .  It is energy sapping.  I wish the entire world would convert everything to email.  Oh and until very recently, we had a huge amount of medical debt and our phone rang constantly.  Debt collectors–not happy with the amount of money I decided to pay monthly.  Both the phone ringing about 20 times a day and the debt itself was very stressful.

Just like everyone, we need to shop and run errands.  This is best done without Evie as she gets restless in the stores and I can’t stand the dirty looks we get.  And because the child is a geographical genius.  I’m not kidding.  She fuh-reaks when we pass a road that brings her to place that she wants to go.  It is especially fun in the summer when we have to pass our neighborhood pool whenever we leave the development.

There are simultaneously never enough hours in a day and always too many.

Then shit happens.  Evie kicks into a bad sleep pattern, causing her to miss school and appointments to be juggled and missed.  Childcare to be rearranged.  Inability to get errands done.  Or someone gets sick.  But it throws everything off kilter.  Or childcare falls through.

Evie needs around the clock supervision.  She will put anything and everything in her mouth which is both dangerous and accounts for her killer immune system.  She has zero concept of danger.  And she is prone to wandering.

Then there is dealing with support providers.  If you’ve read my blog you know that we have had issues with many, many, many doctors.  Thankfully, right now we have a fabulous team–including the very best pediatrician, Dr. Paul Parker of Richmond Pediatrics and our new psychiatrist, Dr. Jeanne Greenblatt–she is all kinds of fabulous.  You can see all of the other providers and diagnoses that Evie has on the picture of the map.

We also work with two social worker type people whom are both lifesavers when we need help.  Very competent.  Very caring.  Very understanding.  I couldn’t ask for better.

There is dealing with school.  Which tends to be most difficult at IEP time.  Which is now.  Her entire school team is sweet.  And I know they are always trying to do what they think is best.  But we almost always disagree on the important things.  It is a constant struggle between doing what I know is best for Evie and not pissing someone off so much that it affects Evie.  The very best part of Evie’s school, in my opinion, is her morning paraeducator, Sue.  Sue has worked with Evie for almost two years and she is enthusiastic, loving, positive, and respectful.  Always.  I can tell when Sue is absent from Evie’s day by her mood when she comes home–even though there are probably equally wonderful people working with her.

The question/comment people most often ask/make:  “I have no idea how you do all that you do.”

The answer is that the alternative is not doing it.  Not an option.

So, we muddle through it.  My husband and I spend almost zero time alone together.  I don’t remember the last time we went someplace without the kids.  It has been years.  And by someplace, I mean for even an hour-not a vacation.  We are ALWAYS exhausted.  Our home always feels like a cluttered mess.  And keeping commitments that have a specific start and end time is really hard–like I can’t explain to you how hard.

But we are a happy family.  Seriously.  Like I’ve never been so happy.  And tired.

 

 

 

 

Suck it Seizures

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We spent Monday down at Dartmouth having an EEG and mostly just driving back and forth.  Evie had the EEG, I did the driving, and Maxine and my Mom kept us in good company.

Evie was her usual trooper self–even though having her head/hair touched is her most disliked situation.  She is constantly being poked and prodded and examined; yet, she just keeps on keeping on with very little complaint.

So her last EEG revealed seizure activity every ten seconds or so.  So we decided to try a new medication.  The new medication is not without side effects–tremors and bruising in Evie’s case.  But….

But.

But.  It is working!

Her EEG is still abnormal (with discharges from both temporal lobes and some generalized discharges for you medical nerds).

But in the words of Dr. Holmes–it is 95% better than the last one.

Her previous state was compared to trying to work on a computer that was being unplugged every ten seconds.  Can you imagine being interrupted every ten seconds?  And still functioning?

And my girl, Evie.  She has had all of this going on and she is sweet.  She is just so sweet and cuddly.  She is extraordinarily good-natured even though she’s had her brain scrambled every which way.

At 95% better, she is the same sweet child.  But she is more connected to her world in so many ways.

This is just totally wonderful news for my little love and I am so over the moon to write this update.

Worst Nightmare take 2

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The croup sunk its evil teeth into Maxine’s lungs on Wednesday.  By Thursday morning, things were bad.  Even after paging Maxine’s pediatrician first thing for a script, things were feeling dire by late morning leading to a panicky call back to the pediatrician.

“Should I call 911?”

I will never forgive myself for asking that question of the pediatrician instead of calling.

“I don’t think that is necessary.  Take her to Fannie Allen.”

Following this advice instead of my instincts–one of my biggest failures as a mother.

By the time we got to Fannie Allen Urgent Care, Maxine had a look about her that meant we were ushered past the waiting room full of patients into a room.  Human resources, spread thin during cold and flu season, followed us to Maxine’s room.   Not a good sign to have multiple nurses, a doctor, a physician’s assistant, and a medical technician all crowding around Maxine with furrowed eyebrows–the telltale sign of concern.

Some chilling moments when Maxine’s pulse oxygen dropped into the seventies.  Steroid shots were administered and a mask blowing some sort of mist in Maxine’s face.  A too bright voice told me that an ambulance had been called to transport Maxine to Fletcher Allen.

By the time the ambulance arrived, Maxine’s coloring was a shade of blue gray that caused my heart to rise up into my throat and those butterflies to fill my stomach with furious beating wings.  And Maxine, who had been working so hard to breath, seemed to be working less and less.  This was not comforting when coupled with her coloring and the looks that were being exchanged by the medical professionals while Maxine was strapped to the gurney and wheeled out to the ambulance.

I was directed to sit in the front of the ambulance.  No way.  I took my seat in the back of the ambulance by Maxine’s gurney.  Maxine looked lifeless.  The screaming I was doing in my head seemed to play out in the desperate sirens and blaring horn of the ambulance.  And I sat at Maxine’s bedside helpless.

I didn’t pray because I don’t pray.  I begged the universe to let my baby be okay.  I kept my selfish desire to scream and cry at bay and I forced my voice to be calm and soothing.  The EMT said that Maxine’s pulse oxygen was at 44.

Terror.

We pulled into the ER and were taken to a room which immediately filled with people.  I tried so hard to push the flashbacks to Evelyn out of my mind and concentrate on Maxine.  But I couldn’t.  I was reliving my worst nightmare with Maxine.

Wonderfully.  Beautifully.  Thankfully.  They were able to administer the medicine that Fannie Allen didn’t have via some sort of mist mask.  I could see it fill Maxine’s nose and mouth with the life I was begging the universe to give her back.

I was finally able to lift my baby to my chest and hold her to me.  To administer the comfort and love that are as important as the lifesaving drugs.  To cover her face in kisses and whisper the secrets of my love into her little ears.  To make promises for her tomorrows and thanks for her today.  To beg her to never go back to that terrible place again but to promise that I will go with her everywhere.  To apologize for failing her.

acceptance

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Acceptance is such a funny thing.  Knowing what to accept and what not to accept is not always clear–for any parent.

My journey to acceptance of Evelyn’s special needs has been tumultuous and emotional.  And sometimes I don’t know if I am accepting too much or not accepting enough.

When Evelyn first started showing signs of physical developmental delays at a couple of months age, I wrote them off to mere differences in development.  Over time, although it became more clear that her differences were of a more significant nature.  But I tricked myself into believing that she was just moving at her own pace–which she was—but I couldn’t (maybe wouldn’t) wrap my mind around a permanent disability.

Let me back up.  Up until my pregnancy with Evelyn, I’ve had a pretty easy life.  I have wonderful parents who have always supported me.  I’ve always felt loved.  I never really worried about anyone because for the most part the people that I loved were healthy.  I would say now that I had an unreasonable faith that everything would always be okay–that my life would work out the way that I had expected it to.

Before Evelyn had an MRI at two years old, there was a round of really scary genetic tests.  She had been diagnosed with hypotonia (which means low muscle tone) but they didn’t know what caused it.  So there were a slew of different degenerative diseases for which they tested over the course of a year.  During that year, I stayed up late every single night googling, and googling, and googling.  What I read was not reassuring.  I lived in fear.  Finally Evelyn had an MRI at age two which revealed a brain malformation in her cerebellum.  They believed that this explained everything that she was experiencing, that she would always have low muscle tone, but that she would progress typically otherwise.

So I breathed easy for a while…we lived, we loved, we did our thing.  When Evelyn was almost three, she pretty much stopped talking and started having absence seizures constantly.  Enter a new reign of fear.  The neurologists and geneticists went into another tizzy and I think I was even more scared than I’d been the first time since so many signs pointed to a degenerative disease.

There is nothing that I can compare to worrying that your child may suffer and die.  Those words are so hard to type.  It is almost unbearable for me–for any parent–to consider these possibilities for my child.

So when the blood tests, the mris, the spinal tap, the halter monitors, and all of that other stuff were exhausted, we were left with autism to explain the regression.  And autism was a huge relief.

I embraced autism.  I wrapped my mind and heart around autism.  I accepted autism as part of Evie’s fate.  And it wasn’t devastating.  I moved forward with optimism.

Acceptance comes at different times.  Scott was slower to accept what autism might (likely will) mean for Evie.  Shortly after her diagnosis, I remember that he made a comment about her “catching up” developmentally.  Even though I gently push him towards reality, often, I don’t believe that he has fully accepted what autism means in our family.  I think it has to do with the fact that he didn’t spend time considering the horrible degenerative diseases that were on the table.  So he didn’t feel that sense of relief that washed over me when we heard, “autism.”

Last week, he mentioned that a coworker had asked him how severe Evelyn’s autism is.  He told him that Evelyn is high functioning.  I admit that I laughed because Evelyn doesn’t have speech, she isn’t toilet trained, she doesn’t have self care skills, etc.  She certainly wouldn’t be labeled high functioning by anyone else.  But it is touching, to me, that her daddy labels her as such–because she laughs, because she loves, because she has a sense of humor, because she has a temper, because we have a family language, because Evie “functions” just fine in his eyes.  And I love him for that.

Every time my husband reads one of my blog posts he cries because he is reminded of the fact that Evelyn’s delays and differences from a typically developping are truly profound.  Part of me wants him to embrace the probabilities, but another part of me sees the benefits of accepting nothing as an absolute and everything as a possibility.  Afterall, it makes me crazy that some of the people that work with Evelyn seem to have written off the possibility of her making gains with speach. Why should I feel the need to tell Scott that it is probable that Evelyn will never live alone?

My acceptance is different than Scott’s.  I don’t know which–if either is better.  I take life day by day.  I don’t plan what Evelyn will or will not be able to do.  I’m happy with any fate where my daughter is happy and healthy.  Scott doesn’t have higher hopes for Evelyn as what could be considered a higher aspiration than health and happiness?  But he definitely feels like Evelyn will make more significant developmental progress than I think is likely.

Where do you strike that balance between not allowing our hypotheses turn into limitations and dealing with things realistically?  Because both are essential.

Either way, both Scott and I accept that this isn’t what we expected or planned.  We are both surprised that it is, actually, far better than what we expected.  And while we might disagree about how things are likely to pan out in terms of our future as a family, we agree that health and happiness are our only objectives.  And I think we both have learned that happiness doesn’t live in our expectations for our family–but in our family itself.

instincts–rated R for salty language

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I believe in following my maternal instincts in almost every case.  I learned, the hard way, with Evelyn to follow them even if the doctors and nurses and medical professionals say one thing and I feel compelled in a different direction.

Maxine has many of the symptoms of an overgrowth disorder called Beckwith Wiedemann Syndrome.  Another mama of a child with this syndrome actually told me to look into it many months ago.  When I first read about it, a shiver went down my spine as I felt like I was reading about Maxine.  We went to the geneticist to talk about it–the appointment was horrible and turned into a lecture about breastfeeding.  You can read about that appointment here.  The short version is that she blew us off and told me to stop breastfeeding my seven month old baby.  We kind of had a polite argument where she borderline told me that I was abusing my child and I borderline told her she was clueless about infant nutrition.

Fast forward to now.  One of the major symptoms of this disease is an enlarged tongue.  The geneticist told us that she didn’t have one.  But I would bet my last dollar that she is sadly mistaken.  People are constantly commenting on her tongue size.  She is constantly moving it around her mouth as if it doesn’t fit.

Something is not right.  I feel it way down in the pit of my stomach.  I am angry with myself, as a mother, for allowing myself to be shushed by a doctor.  Granted, I didn’t follow her feeding advice.  But I didn’t push back with regard to this syndrome.  I quieted the voices in my head that were telling me to push further– to get a second opinion.

I just left a message with our primary pediatrician.  A sheepish message.  Because there is a good chance that I am wrong.  And I really don’t want to be that mother that is always complaining about medical professionals.  Hell, I am that mother but damn it, I have good reason to complain.  I spend a shit ton of time in doctor’s offices between the two girls.  Of course we are going to run across some duds.  And for god’s sake, even if I am wrong (and I hope I am) she did discredit herself as a professional by telling me to wean my seven month old baby and feed her solids instead of breastmilk.  She is wrong about that.

And PS–this syndrome is fairly benign in most cases but requires careful monitoring.  Typically, kids outgrow it.  But it could explain a lot of things about Maxine’s size relative to the amount that she eats, the fact that she has difficulty moving food around her mouth, etc.

I try to be positive.  I try to tell the negative voices that creep into my head to zip it.  But if I am right about this, heaven help that doctor because I am going to unleash the mama tiger that is tied up inside of me.  Doctors aren’t perfect, they are entitled to make mistakes and they don’t know everything–I don’t expect them to.  But I do expect them not to be assholes while they are spewing BS.  If I’m wrong, I’m happily eatin’ crow.  Stay tuned.

fat thursday

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by now, i’ve lost my rose colored glasses when it comes to doctors.  i know they can’t fix everything.  i know they don’t know everything.  and i sure as hell know they don’t dictate the choices that i will make for my family.  the good ones know these things as well.  the bad ones don’t and try to exercise the authority that they think the initials after their names gives them.  um no.

so little chunkadunk, maxine. we took her to the geneticist today.  said geneticist was already on my crap list for not having gotten back to me for almost six weeks after she said she would.  separate issue, regarding evelyn.  perhaps this geneticist did not appreciate the fact that i complained to evelyn’s medical social worker about her utter unresponsiveness.  but i digress.

maxine had an appointment to rule out overgrowth disorders today.  i assure you that i was not at the geneticist to seek advice about infant breastfeeding or infant nutrition.  she ruled out the potential genetic issue for which i am majorly relieved; although, part of me wondered if she hadn’t ruled that out before she even saw us.  the questions did not center around genetics.  in fact, they were almost entirely about maxine’s feeding schedules.  i, certainly, understand that these questions had a very legitimate place in our consultation. however, some attention should have been given to her actual field of expertise.  GENETICS.

she, apparently, wanted to demonstrate how very little she knows about the subjects on which she preached.  having, obviously paid no attention to my answers, she proceeded to tell me that my exclusively breastfed child was obese.  her answer?  wean the seven month old baby and start her on solids instead.  anyone that knows anything about breastfeeding, this is like telling an overweight adult to replace salads with cheesecake to lose weight.  and wean a seven month old?   credibility lost.

how dare i argue with a doctor, right?  that’s what she thought too.  mothers that aren’t doctors cannot be educated and well informed. certainly, they shouldn’t be so brazen as to defy a god doctor with a differing opinion.  oddly, the doctor could not back up her opinions with evidence and the mama could. how about that?  but that mattered…NOT.  i should bow to her alleged anecdotal evidence.  sorry to say, doc, “because i said so” stopped working on me about 25 years ago.

as much as i enjoy being borderline accused of abusing my child by breastfeeding on demand as my instinct and solid medical evidence indicate i should, i’m taking the medical records for both of my children and moving them to dartmouth.  dartmouth.  where i hope that the doctors will either have a clue about breastfeeding or be smart enough to shut it.

after all this, i was so frustrated that i cried.    as mamas, we are judged, questioned, and criticized for following our instincts and nurturing our children in a way that feels right.  it is no wonder that women have trouble establishing and maintaining a successful breastfeeding relationship in this country.  i was so thankful to have a la leche league leader as a friend to call.  it is so lovely to be lifted up by a fellow mama…as only another mama, fighting the good fight, can.

unthinkable question

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you know how when something really wonderful happens, no matter how hard you try, you can’t explain how really truly wonderful it was to people who weren’t there?  horror is inexplicably the same.  that day, i took a deep breath as if to scream and i was so scared that i couldn’t let it out.  maybe i did, but i don’t remember.

evie was crying non stop.  something didn’t feel right.  she was breathing rapidly.  a nervous call to the pediatrician’s office left me feeling foolish for counting.  foolish new mommy.  “you have better things to do with your time than count your baby’s breaths.”

was it days or weeks later?  i don’t remember.  i insisted on bringing evelyn in to the pediatrician.  the nurse, maybe the same one that i spoke to on the phone, put a heart monitor on evies toe.  i saw the numbers jump all over.  she tried to dismiss it and tell me it was fine.  but it wasn’t.  i knew it wasn’t.  i would not allow my instincts to be brushed aside.  i could feel my voice rising, cracking.  but i was heard.

evelyn’s heart was racing over 200 beats per minute.  my mother was with me.  who drove to the hospital?  i don’t remember.  it doesn’t really matter.  my husband met us there.  the cardiologist, she didn’t seem that worked up.  i allowed myself to relax for a moment.  just a moment.  as they glided the probe over evelyn’s tiny chest, i saw the nervous glances that were exchanged.

emergency room.  i don’t remember how we got there.  but we were there and there were so many people in the room.  20? 30?  i don’t know.  this was bad.  i knew this was so bad.  a social worker came over to speak with me.  i don’t remember what she said.  but this was bad enough that i needed a social worker?  oh my god, i can’t do this.

the doctor taped my four week old baby to the table.  he taped my baby to the table.  i think the table was metal.  she was screaming.  she was screaming so loudly that there would be a long excruciating silence before the blood curdling screech.  and that is what was happening.  my blood was curdling in my veins as they poked unsuccessfully at evie’s tiny veins.

my arms were aching to hold my baby.  to comfort her.  i think it was hours.  i could be wrong.  they finally got the line started.  they started blasting medicine into her veins.  the numbers on the cardiac monitor fluttered and returned to 200+.  they were all shaking their heads.  the cardiologist was on the phone with another cardiologist.

we were sent upstairs to the intensive care unit and told that she needed to have cardioversion.  they wanted to put my baby to sleep and restart her heart?  how does a mother even make a decision about this?  google was not an option.  this was one of those leap of faith moments.  i put the life of my tiny daughter in someone else’s hands.

i don’t know how much time elapsed.  my dad was there.  i had so many questions.  actually, i had one question.  but for the life of me, i was too afraid of the answer to ask it.  so i wondered.  and i watched the same question in the eyes of my husband, in the eyes of my mother, in the eyes of my father.  none of us asked.  i really don’t remember much of anything except the answer to the question.  …cardioversion successful…evelyn okay.

when you have to ask that unthinkable question about your child.  even if it is just in your head and you never say it out loud, something changes.  your lungs never completely fill with air.  you’re too afraid to totally exhale.  your heart beats a little bit differently.  butterflies are always nearby to jump into the pit of your stomach and beat their furious wings.

this isn’t everything.  i can’t give you everything.  this is what i can give you right now.  from that day.  the day i thought the unthinkable question.

all of it.  unimaginable.  only now, i could imagine.