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

Sleep

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Hanging out at a local coffee shop with my two fluffs

There exists an extremely rare congenital condition called Fatal Familial Insomnia which, according to Wikipedia, is known to be carried in the bloodlines of just twenty-five families worldwide.  The insidious and incurable disease progresses from insomnia to hallucinations, to an inability to sleep at all, to dementia, and finally death after less than a year.  As someone who has considered putting “Sleeping” on my resume as a skill, Fatal Familial Insomnia is my ultimate nightmare.  This is worse than any actual nightmare I’ve ever had, including the recurring dream I have about losing all my teeth (apparently, that’s a common one) and the living nightmare I have of not playing enough board games (much less common).

Life with Quinn as a baby (him, not me) was the typical sleep-deprived state, but there was always a light at the end of the tunnel.  He could soothe himself to sleep with his fishy monitor at a fairly young age, he sucked his thumb, he had his little rabbit lovey that comforted him better than any of my silly songs or back rubs.

Life with Marshall has been a lot more stressful.  Poor breathing and frequent hospital stays made any sleep training impossible, and until recently, the only way to soothe him back to sleep was through a combination of constant bum patting and bottles all through the night.  Clearly, this was not a long-term solution to the restless nights.  Bridget and I hit the breaking point more times than I can count, and were it not for my morning coffee, I’m not sure I could have functioned at work on a daily basis.  My students joke that they can tell when the caffeine hits me because I go from Bela Lugosi in a coffin to Bobcat Goldthwaite right at 9:00 a.m.

Last night, like a perfect bridge in a Meatloaf song, paradise descended on our household (unfortunately, there was no dashboard light).  When I woke up this morning at 6:00, with sounds of Marshall fussing through the baby monitor, I looked over at Bridget.

“I’ll get up with Marshall.  How many times did you get up last night?”

“Get up?  Not once.”  Incredible.  After he had a little crying fit at 9:00 last night, Marshall slept nine hours straight.  Then, another question hit me.

“Wait a minute – what happened to Quinn?  Where is he?”  See, Quinn likes to crawl into our bed at night, usually some time around 2 or 3 a.m.  We’ve stopped fighting it.  Too tired to fight it.  Also, he smells nice.  Yet last night, in conjunction with Marshall’s greatest night of slumber, Quinn also slept through the night in his own room (not for the first time, mind you).

If you’re counting, that also means I got a good eight hours of sleep, uninterrupted.  I feel like I’ve won the Powerball lottery, except at this point, the eight hours of sleep is a lot more helpful than one hundred million dollars.

I don’t believe much in luck, other than the time I wore the same underwear for every Denver Broncos game for a full season, but I’m going to have to buy a lottery ticket this week.

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Chomping on a banana this morning – after eating all of my scrambled eggs and tomato.

Sleep Deprivation

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Fatal Familial Insomnia is an extremely rare inherited condition where sufferers slowly go from insomnia and panic attacks to an absolute inability to sleep and weight loss, eventually resulting in dementia and death.  I appear to be suffering from an even rarer form of non-inherited insomnia that is coupled with dementia and weight gain.

Tonight, partly so I can keep a record of just how much I’m sleeping, and partly for your entertainment, I’m going to keep a running diary of the night.  The most recent entries will be at the top.  I’ll update as I’m able to and if I can remember to do so in the middle of the night.

I already feel like this is a big mistake.


4:19 p.m. – Okay, so clearly the live blogging ended in the middle of the night, and no, I haven’t been asleep for the last twelve hours.  Here’s what I learned from last night:

(a) I could not be a night nurse.

(b) If I could just remember to write them down right away, I have some pretty weird dreams.

(c) I should probably start drinking more often.

Most importantly, I think Marshall’s sleep is going to get better in the next few months.  Apparently, it will take several months to really improve, and wow, I don’t know if I can wait that long, but I can sense it.  As his breathing gets better, as a commenter and old friend noted, gentle sleep training is going to have to start.

One morning, I’m going to wake up and realize that I’ve slept eight straight hours.  I cannot wait.


4:40 – Another wake up. Bottle again. Dreamed of rain forest. Giant plants. The Rock was gone.

2:30 – I think I just slept. Not sure.  Marshy woke up. Giving him a bottle now. I think I remember dreaming about riding a roller coaster with The Rock. Weird. I don’t like roller coasters.

 

1:00 – I wake up and there’s screaming.

Some time in the last hour, Bridget and I switched spots and I ended up getting an hour of sleep in a bed, but it’s not working.  I can hear Marshall’s apoplectic crying from the next room.  I come back in, much to Bridget’s chagrin, and take over.

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What a turkey

 

If anyone wants to bring over a bowl of noodles and a bottle of scotch, I probably have about an hour before he wakes up again.


 

10:25 – He’s still not fully asleep.  I’ve given him a bottle to drink in his crib.  I’m feeling oddly awake right now.  If Marshall doesn’t fall asleep soon I’m going to start him on some early ukulele lessons tonight.


9:35 – I knew this wouldn’t last.  He was getting all sweaty on me and finally woke up.  Started screaming like he was being attacked or was forced to watch Jessica Jones on Netflix (it’s really not that good).  Took me ten minutes to rock him back to sleep.  He’s in his crib now.

The good news is that I’ve already gotten 20 minutes of sleep.  I’m almost at my nightly quota.


9:00 – New strategy. I’ve brought him onto the floor to lie with me. Problem is his head is cradled in my left arm, and it’s starting to go numb. If I was a hiker, this is when I’d start thinking about sawing off my arm. Help.

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I do like his hot breath

 

8:35 – That was short-lived.  He woke up screaming.

Fortunately, I am one of the greatest bum-patters in the Western hemisphere.  Picked him up, soothed him with two minutes of bum patting and light cheek-kisses, before laying him on his side on his inclined mattress and patting his bum for two more minutes.

I’m going to test my powers tomorrow on the street.  I’m going to pat a random pedestrian’s bum as they walk by and see if I can drop them into a deep sleep on the sidewalk.  This power could make me rich and powerful.

Aaaaand…he’s crying again.  Sweet mother of god, help me.


 

8:30 – I’m pretty sure he’s asleep, but he’s making gurgling noises right now.  His surgical scars are still causing him to have some secretions to leak from his nose and into his mouth.  It also runs out of his nose, and occasionally has a bit of bloodiness to it.  The first morning after we brought him home, he woke up looking like he’d eaten a raw steak in the middle of the night.  Technically, though, you have to sleep in order to wake up, so I guess he just ate a raw steak in the middle of the night.

I should go to sleep myself now, but…oh damn it, he’s making noise.  Still settling down.  So scared.

I have my cell phone, my laptop, a small boardgame that can be played solo on the floor, my CPAP machine, and the window through which I can jump if the night gets too difficult.  I’m going to close my eyes now and hope for the best.  If this is the last update to the post, one of the following has happened:

(a) He slept through the night.  This is slightly less likely than me winning the next Miss Universe pageant.

(b) I slept through the night and ignored him – also unlikely, and will incur serious wrath from everyone in the house, including the cats.

(c) It was so crazily busy during the night that I forgot to post as the night went along, and by the time the sun rose, I was a crying mess on the floor.  This has the same chance of happening as my odds of gaining twenty pounds in the next two weeks – in other words, pretty good.

(d) I forgot to update.  Hey, I have a short attention span.


8:25 – There’s a chance he’s asleep.  I’m lying on the floor on my little folding mattress, and I’m too scared to poke my head up to check.  It’s like cooking turkey – if you open the oven to look, it won’t be done.

Outside the door, Quinn is still awake and running up and down the hall playing with this damned plastic bow-and-arrow set his mother bought him today from the dollar store.  He thinks he’s Hawkeye or something like that.  Why couldn’t he pretend to be Nicola Tesla or Sleeping Beauty instead?


 

8:20 – He just finished his bottle.  I hear some heavy breathing.  It might be from me.  At this point, my sleep apnea is likely much worse than his.  It’s possible I drifted off to sleep briefly and woke myself up with my snoring.

Note the dead eyes, and it’s only 8:00 p.m.  And I swear, my forehead was smaller at one time.  I should sell advertising on it.

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8:05 – I just put Marshall down.  I’m trying a strategy of keeping him up a bit later than usual to see if being extra tired will help him sleep for longer stretches.  As most parents know, this is commonly referred to as “stupidity”.  However, for some reason, when he needs to stay over at Bridget’s stepmom’s house, she does this and he sleeps for anywhere from four to six hours straight before his first wakeup.  Incidentally, they just left yesterday for a Mexican vacation.  I begged them to take me.  They politely declined.  I sobbed silently in the corner of a Starbucks.

Here’s Marshy just before I turned off the light:

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I’m hoping he falls asleep as he finishes his bottle.  We’ll see.

Learning From Marshall

Morning after the "sleep study".  What a misnomer.
Morning after the “sleep study”. What a misnomer.

It’s 7:20 on a Friday morning as I type this.  Marshall and I spent the night at the hospital doing a sleep study.  The hospital wanted to try some sort of high-flow oxygen machine to see if it would alleviate some of his sleep apnea between now and whenever he gets his surgery to have stents put in (at the moment, in January).  I don’t know how Marshall feels as he can’t talk yet, but I feel like I’ve been hit with a sledgehammer in the head.  I don’t think the therapy worked, but we’ll have to wait for the results.  He sure as hell didn’t sleep better with all of those wires attached to him, and it must have been tough for him to have the continuous stream of air forced into his nose.  I managed to get a bit of sleep, but I also feel like I could sleep for another twelve hours straight.  Thank goodness for coffee, right?


Naked morning cuddles
Naked morning cuddles

After Marshall was born, a lot of people told me that Marshall would teach all the people who are in his life so much.  That made me really, really angry.  Why should MY CHILD be the one who has to carry the burden of teaching people lessons about life?  What kind of responsibility is that to give my child?  I still feel like that.  I HATE the thought that sure, some people are going to become more empathetic or caring because of their interactions with Marshall, while Marshall is going to have to put up with people staring and pointing at him because he’s different.  Bridget has already had a little girl come up to her at a playground where Quinn was playing and ask why Marshall’s head looked different.  She was asking innocently and without any hint of malice, but when I heard the story, I started crying anyway.  I should get a job in soap operas.

The truth, though, is that this experience of raising Marshall and learning about Apert syndrome has taught me a lot about myself and the world.

  1. I’ve learned to be a better father to Quinn.  I think Marshall’s rocky start to life has made me appreciate Quinn’s good fortune and health.  Oh, don’t get me wrong – it’s not all roses between me and Quinn (see below!), but in those times when I get to devote all of my energy and attention to Quinn, we’ve had some amazingly tender moments.While I’m on this point, I want to thank the woman on the College streetcar on Wednesday night at 6:30 who said something to be quickly before getting off at her stop.  Quinn and I were talking about his day at school, what it meant to buy a birthday present for someone, and how it didn’t mean we had to get things when it comes to our birthdays.  I was just following what I really believe and having a great talk with Quinn.  The stranger, who I guess was sitting behind us, leaned over and said, “Wow, you are an amazing dad.” Whoever you are, thank you for your compliment.  It was a surprise and touched me so, so deeply.  I have been thinking about your words and holding on to them during the tough moments for the last few days, and will continue to use them as encouragement.
  2. Quinn is going to be an amazing and protective big brother.  Hey, you never know how sibling are going to be.  I know plenty of people who don’t talk to their brothers or sisters.  It’s still early days, but Quinn already knows Marshall is different from other kids.  He loves holding his little mitten hands.  He starts and ends each day with a loving hug and kiss for Marshall.  He gets upset when he thinks about Marshall going to the hospital, and wants to spend time with him.
  3. I cannot look ahead to the future right now – tomorrow is too far away.  Taking it one day at a time is such a cliche, but that’s all I can handle at the present.  Every day for me has turned into a battle to make it through the day and to bed. I definitely don’t spend enough time with Quinn and Bridget because I’m so tired all the time.  I was never a particularly patient person, and being around me now is like walking on eggshells for the rest of the family. Thank goodness for grandparents who have been so invaluable in helping with cleaning, cooking, and childcare whenever everything gets too crazy.
  4. There has to be hope.  Even with the struggle mentally to make it through each day and night, there has to be some hope for the future.  Out of the hospital for a long stretch between June and November, Marshall is slowly catching up in his development.  Nothing feels better than coming home after a tiring day to find him in his Jolly Jumper near the front door.  He hears me and jumps to turn himself around.  And then there’s the smile and twinkle in his eyes when he recognizes me.
  5. The school system is moving in the wrong direction Class sizes getting bigger, special education programs folding, and labour negotiations taking forever every few years in Ontario.  As a society, whether or not you have kids, you have a vested interest in children getting the best education possible.  This is not the area to save money.  These are the future leaders and citizens of our world.  I fear for Marshall’s entry into the school system if he needs extra support.  If you are a parent of a child with special needs, do not let the school system push you around.  Speak up and get your son or daughter the education he or she deserves.
Nothing but jowls
Nothing but jowls

Just as I’m about to post this, I’ve received an email from Bridget that the results from last night’s study are in: it didn’t work, and his sleep apnea is worse than it was a few months ago.  Hopefully, the surgery date is pushed up from January and we get Marshy more of what we all need – air.

Just Breathe

Fat cheek overflow
Fat cheek overflow

I’ve been sleeping on the floor in Marshall’s room each night.  Sleeping is, of course, something that doesn’t happen much when you are the parent of most seven month-olds, although by this point Quinn was starting to sleep for most of the night, waking up once on average.  Once I can handle.  Add Marshall’s difficulty breathing and sleep apnea, and it’s a recipe for midnight disaster.  Between 7 p.m. and 7 a.m., he’ll wheeze and gasp for breath frequently, wake himself up with his breathing troubles, and need to be soothed back to sleep with either a bottle or some rhythmic bum-tapping up to half a dozen times.

It was getting to be all too much to drag myself out of bed in the middle of the night to make the ten-step walk to his room, pick him up, and rock him back to sleep.  I just couldn’t do it anymore.  So, I did what ever desperate father with a wish for sleep deprivation-caused heart failure would do – I moved myself into his room.

As I type this post, Marshall is in his crib next to me in his small room, wheezing like an old pickup truck.  He snores not unlike an old dog might (or even his old man), but with each little whine, I tense up, ready to prop myself up, reach my hand over the railing, and start patting his diaper-clad bottom.  If that doesn’t work (and at least once or twice a night it doesn’t), I resort to the precious breast milk that Bridget is still pumping out a few times a day.

The first few nights of this were great.  It was like camping out in the woods.  I’m on the floor with my invaluable CPAP machine, a couple of books, there’s a little reading light next to me, and there were even a few times when I had the Blue Jays baseball game on the computer (sound muted, of course).  But just like the overnight stays at the hospital followed by days of work earlier this year, it’s starting to catch up to me.  I’m so tense with each sound he makes that I might as well not sleep at all most nights.  If it weren’t for the massive coffee each morning, I’d be in trouble.  Boy, when the caffeine kicks in just as the morning bell rings, I’m raring to go!  As an added bonus, my students have enjoyed the spontaneous dancing that happens as the coffee hits my system hard.

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Marshall is scheduled to have stents put in to hopefully ease his sleep apnea symptoms.  This is supposed to happen within the next few months, and for now, we’re trying to stay positive until it happens.  Me, I’m just trying to hold off the inevitable nervous breakdown until the winter holidays when I can at least curl up on the couch and sob to myself while holding my cats and watching ’80s teen movies.  Every time he gasps for breath, I think of the harm it might be doing to his brain development.  This surgery, while it will worry me to no end when it happens, can’t come soon enough for my liking.

The euphoria of all the recent good news from his ophthalmology tests, his MRI, and his CT scans is hard to remember when it’s 2:48 a.m., and I’ve managed to squeeze in only an hour of sleep since the last stirring.   Thankfully, the warm feeling I get when I hold his fat, sweaty body in my arms calms me down.  Sure, sometimes I cry out of frustration, but when he reaches for my fingers with his little mitten hands, all is good again.

Until 4:02 a.m., at least.

Too sunny!
Too sunny!

No rest for the weary?

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Little Marshy Marsh hooked up for his sleep study tonight.

Tonight, no one in ward 4C at the Hospital for Sick Children will sleep, because I am here for an overnight stay with Marshall.  I have, as one sleep lab technician called it, one of the worst cases of sleep apnea he has seen.  I don’t think this was a compliment, but I’ll take it.  For the past year, I’ve had a CPAP machine, and it has changed my life.  If I had to choose between Bridget and my CPAP, it would be a close call.

Marshall is staying overnight for a sleep study of his own, and I am here with him.  I had too much stuff to bring with me, so I have left my CPAP at home.  I miss her already.

We’re here to determine the severity of his probable sleep apnea, a very common thing for children with craniofacial anomalies.  In some cases, children need to have their tonsils removed to ease their breathing.  If he was older, Marshall might undergo mid-face surgery to increase the size of his respiratory passages.  In my nightmare scenario (please, please, please no!), a tracheotomy is performed.  I know it happens a lot in children with Apert, and I’m hoping he doesn’t need it.

When we’re done with the sleep study tomorrow, we’ll head right on over for at least two more appointments in the hospital, including an ultrasound on his brain to help determine a timetable for surgery.

From my perspective, Marshall has changed so much for the better over the past few weeks.  He’s rolling around constantly, he’s vocalizing, and he seems much more attentive and alert.  However, when the doctors see him, so many question marks are still there for them.  It’s hard to stay positive when the medical professionals need to look at what’s “wrong” and figure out the best course of action.

That’s all for now.  Thank you, again, to everyone who has been reading and following along with Marshall’s progress.  Many people have sent us messages of support, and I encourage you to ask us if you have questions about Marshall’s condition.  I may not have the answers, but I promise, I can make up something really interesting.