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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Update on Hands (graphic photos)

Before I start this post, please be aware that there are some fairly gruesome photos of his hands post-surgery at the bottom of the text.  I’ve included them not for sensational purposes, but in the hopes that any families who might one day be facing the same procedure will know what to expect. 

It has been just over two weeks since Marshall’s operation to separate his fingers.  Incredibly, he spent just one night in the hospital before being released.  I would have felt less anxious at the hospital, but every time we go in for a stay, I swear I come out a little more unhinged and jumpy.  So, armed with a prescription for morphine (for Marshall, not me) and his hands and lower arms heavily wrapped in bandages, we went home.

For the first few nights, sleep was scarce as Marshall was clearly feeling some discomfort in his hands, which is to be expected given the fact he had just had his fingers separated and skin grafted on to the newly exposed areas.  In addition, he had a long wound along his lower stomach, from hip to hip, where the skin for the graft was taken.

A week later, after a checkup to determine that the healing process was going smoothly, we began taking the bandages off to wash his hands and a few days ago started using a cloth to gently rub his hands in the bath.  As you can imagine, Marshall is not a big fan of this.  He whimpers as soon as I touch his hands, and sometimes, his hands are still so raw, there’s some bloody spotting on the cloth.

A parent on one of the Apert syndrome Facebook groups recently posted an article about PTSD in parents of children with special needs, especially when there was no indication before birth that anything would be different.  I don’t want to overstate or exaggerate what it’s like, but in all honesty, washing his hands in the bathtub is one of the most difficult things I’ve had to do in life.  While it does appear everything is healing nicely and headed in the right direction, his little fingers are still hard for me to look at, and I often have to close my eyes or quietly sob so he doesn’t hear me.  And the whimpering.  The whimpering breaks my heart.  The sadness in his little whimpers haunts me.

He will likely spend a few more weeks in bandages before they can stay off.  And hopefully, there are no complications or problems, and we can begin some therapy on his hands soon so he can learn to use his newly separated fingers.

If you have a weak stomach or don’t feel the need to see the photos of his hands, please don’t scroll down any further.  I’ve left a bit of space so you don’t accidentally look at something you can’t handle.  To all the families who have gone through a similar surgery,  if you have any wisdom or advice to share with me, I would love to hear it.