A Running List of Marshall’s Medical Teams

At the annual AboutFace awareness ride

Up front, I will admit that I am completely incapable of scheduling and keeping track of Marshall’s health care. Left to me, he would miss most of his appointments. In case anyone is struggling with keeping track of what medical care your child with Apert syndrome might need, I’m going to try and keep an updated list of the facilities and professionals who are part of Marshy’s care.

If you think I might have missed an important area of care, please let me know and I will add it to the list. Note also that care and certain procedures offered differ in various parts of the world.

Hospital Services

Plastics – syndactyly release; eventual cranial and possibly facial surgery

ENT – tubes for drainage of ears; tonsils and adenoids removed; partial septumectomy; monitoring hearing along with audiologists

Orthopedics – monitoring lack of normal shoulder range

Opthalmology – monitoring vision and checking for scarring due to inability to fully close eyes at night; monitoring pressure on the eyes (an indication that skull surgery is necessary)

Respirology – sleep studies to determine severity of sleep apnea and to find possible solutions such as using a CPAP machine

Neurology – using yearly MRI scans to check for increased intracranial pressure and enlarged ventricles

Dentistry – dental and possible jaw issues being monitored

Cardiology – apparently, heart issues are common; Marshall’s echocardiogram at 9 months did not indicate any heart problems

Occupational Therapy – monitored and lead the recovery from his syndactyly release (healing from skin grafts to his hands)

Bare-chested dancing for his grandparents

Outside of the Hospital

Speech and Language Pathologists – this is key, especially since many of our children are late to hear or speak; look for courses on how to work with your child to develop language skills

Occupational Therapy – home visits to work with Marshall on using his unique and stiff fingers; strengthening his arms and shoulders

Family Therapists and Social Workers – there is no shame in taking to people who can guide you through the powerful emotions that are inevitably a part of raising your child, as well as the effect it can have on siblings

Hearing – there are many options for assistive hearing devices you may need, in addition to devices that will your child’s teachers may need in the classroom

Government Grants – there is help out there depending on where you live; Canada has a few provincial and federal aids available. If you need help filling out an application form, let me know and I’ll try to help.

Schools – As a teacher, I can tell you that some schools may try to give up on your child. Do not let them push you around. Advocate loudly until they can do it for themselves. If you ate having problems with your school board being unsupportive, send me a message with any questions and I will answer them to the best of my ability.

AboutFace – without their emotional support, I’m not certain I personally would have survived the fear of the unknown. Take a look at their website. These are beautiful parents and families who can guide you through the scariest and hardest moments.

Facebook – there are several private groups where news, questions, and tears are shared. Meeting and talking to others who have gone through what our family is going through had been enormously helpful.

A reminder of how much Marshy has grown
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Word

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Fly Guy

Last week, Marshall turned two.  It was a pretty momentous occasion in our household.  There were lots of tears as I put together a slideshow for the family members that gathered to give him hugs and kisses and to celebrate the incredible journey he has been through so far.  Looking back at some of his baby photos, so many memories came rushing back that I had either forgotten or never remembered.  The trauma of being born means many babies come out looking a little different than they do a few years later, but throw in the tubes and bandages and oxygen hoods that were in, on, and around him for much of the first few months, and he looks like an entirely different child today.

We’ve been lucky enough to get into a class with a speech pathologist once a week where Bridget and I are learning how to teach language to children like Marshall who have communication delays.  Once a week (other than the weeks we have no class yet still show up, only to make our way back home!), we sit in a room downtown with about a dozen other parents and go through strategies, watch videos of our interactions with our children, and make plans on what we’re going to work on this week.

Bridget deserves the praise for getting the ball rolling.  Were I a single parent, I would never have the energy nor would I be aware enough of what’s out there to properly advocate for my child to receive these services.  Whether your child has Apert syndrome or any other condition that affects their speech, motor functions, or anything else, these programs are out there.  Luckily, in Toronto, we have a glut of services to access.

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Cupcake Face

These Wednesday night sessions – 2.5 hours each time – have the feeling of a support group or therapy.  You can see it in the faces of the parents when we’re watching videos of their play with their kids.  There’s tension, anxiety, fear, and hope.  After each video, we discuss the progress we see and point out the great things the parents have done to encourage communication and play.  The relief and joy is palpable.  When you’re living a life of medical appointment after medical appointment, positive feedback feels incredible. There is a shared sense of accomplishment in that room.

Marshall clearly understands most of what we say.  He can’t make me dinner (yet), but “Pick up your boots and put them by the door” is definitely understood.  “Yeah!”, “Okay”, and “Thbbbttttttttt” are heard all day, every day.  Now it’s up to us to give him the language he’ll need, especially if he’s going to tell me he loves me four hundred and thirty-seven times a week.

It’s one thing to teach children how to read – it’s very cool and rewarding when students in my classes suddenly realize they can figure out what those words on a page mean – but to teach a child their first words?  I can’t recall how Quinn learned words.  He just did.  With Marshall, we have to put in a concerted effort to implement our strategies.  Put in a lot of pauses.  Repeat words frequently.  Use gestures.  Use a variety of word types (not just nouns but verbs, adjectives, etc. as well).

Our words this week?  Up, help, and no.  Simple words that all of us take for granted, but imagine the power he’ll feel when he can say those words to us and tell us what he needs.  No more grunting or pointing and me guessing at what he wants.  Oh, to hear him say, “Help, Daddy!” will be wonderful.  “No, Daddy, I don’t want to play a board game”?  Maybe not that sentence.

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Q and M

For those of you who have been following along with Marshall’s life the past two years, you already know that sleep has been, well, keeping us up at night.  Some days, we didn’t even know what day of the week it was or if we’d ever sleep again.  His breathing was so bad, he would wake up every 30 minutes some nights.  The breathing issue is a bit better, but when he gets a cold, it’s still like sleeping near a congested rhinoceros in an echo chamber.

I don’t want to count my chickens before they hatch (mmm…eggs…), but something incredible just happened: I got my second full night of sleep in a row.  I’ve been sleeping in a bed with him lately, as he has moved from a crib to a full-sized bed.  Falling asleep can still be an adventure, but the staying asleep part has been fantastic this week.  TWO NIGHTS IN A ROW.  I feel like I could run a marathon this morning, if only I could run more than a kilometre without daydreaming about sandwiches and beef patties.  I watched him sleep last night for half an hour, his sweet little face snoring gently, his chubby cheeks rising and falling with each breath.  I risked a few nibbles of his face here and there before falling asleep myself.  TWO NIGHTS IN A ROW.  I wouldn’t trade that in for anything short of a lottery jackpot or a lasagna right now.

Hopefully, I haven’t put a pox on tonight’s sleep by writing about this.  If he does it again tonight, I’m celebrating tomorrow with a nice, cold drink of orange juice and soda water.  And cookies.

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Happy, rested faces

Communication Breakdown

 

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One of Marshy’s selfies

 

“Yeah!” That’s about the extent of Marshall’s talking right now.  He can make a bunch of other sounds, and it does sound like he says, “Nonna” when he’s at his grandparents’ house, but other than that, “Yeah!” is his most common response.  Ask him a yes or no question, and he’ll say it with enthusiasm.  Sometimes, I wonder if he understands the questions, but he’ll shake his head if he doesn’t like what you’re asking.

“Kiss Daddy?” Shake.

“Give me a hug?” Shake.

“Do you love Daddy?”

“Yeah!”

At 23 months, he can sign for “more” when he’s eating, he has a sign for “water” which is, unfortunately, very similar to his sign for “stinky”.  That can make for confusing diaper changes.  “Daddy” was his first word.  “All done” is what he shows us when he’s full, and he can also show us “wash hands”.  A few months ago, I saw a Facebook memory come up on my homepage from Quinn’s second birthday.  At that age, Quinn was able to speak in simple sentences and have basic conversations with us (I think – it’s all a blur now, to be honest).  Marshy isn’t quite there yet.

Oh, there’s no doubt he understands everything we say, though.  This past weekend, I took his boots off at the back of the house.  I asked him to pick up both boots and take them to the front door, and he did it perfectly.  Since his surgery to put tubes in his ears, he has gained a lot of steam in his development.  It’s pretty amazing to witness his growth right now.

Still, it worries me that I don’t know how to approach the delay in communication.  Fortunately, we have just started participating in a special program at The Hanen Centre in Toronto for parents of young children with delays in communication.

 

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Taking his fingers for a test drive.  Get it?

 

Last week was the orientation session.  I’ll be honest – 2.5 hours a week on a Wednesday night, for several months?  I know it’s essential that we get some more information and knowledge about this, but I was grumpy as hell last week.  Tired from work, hungry, and all I wanted to do was sit down and do nothing.  And of course, the session was amazing and enlightening.

We were surrounded by a small group of parents in similar situations.  I didn’t really know what to expect, and thought that Marshall would be the only child (it’s just for parents – you leave your kids at home) with a syndrome, but I was wrong.  There was a lot of anxiety in that room, but you could feel the love from all of the parents.  The small group I was talking to shared their situations, and they were all in the same boat.  Some had less information than we have about our child.  Everyone had the same goal – to figure out how to give our children the tools they need to tell us how they’re feeling and what they want.

 

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Sleeping Beauty

 

I’m trying very hard not to go to “what ifs” with Marshall, like “What if he never learns to talk?”  I know it’s unlikely, but possible, and yet thinking like that does me no good.  My heart already melts whenever he I see the twinkle of understanding in his eyes.  He has started playing silly little games with his brother, his exuberant laugh ringing throughout the car on longer drives.  One day, I’m sure he’ll stop grunting to indicate disapproval, and maybe – just maybe – when I ask for a kiss, he’ll say, “Of course, Dad!”

 

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Excited for Christmas morning