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

Surgery, Take Two

Recovery room cuddles

We’re at Sick Kids for Marshall’s second attempt by the ENT team to improve his breathing and lessen the severity of his obstructive sleep apnea.  He went into the operating room at 9:30 this morning and was out before noon.  He looks good, if a bit groggy, and is currently lying in his Nonna’s arms, drinking a bottle of diluted apple juice.

Tonight, I get to spend the evening sleeping by his bedside in the constant observation room on the fifth floor, listening to the beeps and boops of the machines.  It’s not our usual seventh floor private room with the One Direction poster behind the door, but maybe that will be our accommodations tomorrow night once he’s off painkillers.

When Marshall was first transferred to Sick Kids at the tender age of 1.5 days old, time spent at the hospital consisted mostly of crying and worrying.  With each overnight stay, it has become a bit easier and more comforting.  I don’t know if that’s a good thing, as I wouldn’t want any parent to get to the point where they can find their way from the Tim Horton’s to the free newspapers by the elevators with their eyes closed.  Still, it feels safe here, and at the very least, I don’t have to do any housework tonight.  Also, I might try to break my record of four sub sandwiches in one day tonight.

Hopefully, this surgery makes it a lot easier for the little Marshmallow to breath at night.  I was looking forward to perhaps sharing a CPAP machine with him one day, but it would give me great joy to know he doesn’t need one.

In case Subway sandwiches is reading this, I will not say no if you send some freebies upstairs tonight.  Please, no mayo.