Our First Myelo Clinic

Wow, what a day Mason and Mommy had today!  We left the house at 6:30am and did not return home until nearly 1:00pm.  All of that time was spent driving or at Myelo Clinic.  What is Myelo Clinic, you ask?  It is a time when a host of specialists are available to check up on the Spina bifida patients.  The wonderful blessing of clinics is that it consolidates a whole lot of appointments into one morning, saving us travel.  The drawback is it makes for a very long morning.

As this was Mason’s very first Myelo clinic I’ll try to give a rundown of what happened.  First we show up and sit in the waiting room, get checked in, and wait for our name to be called.  As we were one of the first to arrive we got a room quickly.  Exam room 1 was to be our home for the next several hours.  On the door frame a long sheet of paper was hung with a list of all the specialists who needed to stop in and see Mason today.  The door is left open when we’re between doctors so anyone who walks past can see if their name is on our list and pop in. 

Here is who we saw today that I can remember:

1. Margaret the Caseworker – She’s a sweetheart and helps arrange all our appointments, visits, answers questions or finds someone to answer them, and helps track down supplies Mason needs (like catheters).  She’s sort of the command center we work through.  A former neurology nurse, she’s a lifesaver!
2. Lori the Socialworker/Help Me Grow Liason – Lori makes sure we’re staying sane and getting the help we need.  She’ll help us with Help Me Grow services as those start.
3. Renee the Neurosurgical Nurse Practitioner – She examined Mason’s incisions (they’re healing beautifully), checked his fontanel (soft), answered questions, and then called us this afternoon with the doctor’s evaluation of Mason’s brain ultrasound that was done today.  More on that later.
4. Cara the Occupational Therapist – She checked over Mason’s upper body function.  Everything looks good.  She asked if he preferred to keep his head turned to one side or the other, which he does.  Mason doesn’t like laying on the right side of his head where his shunt was placed, which is common.  She reminded me to give him tummy time (we do already), time upright to work on trunk and head strength (yep, we do that too), and to purposefully play with him encouraging him to look to the right with toys and games to help balance out his dislike of that side.
5. Andrea the Physical Therapist – She did a basic check over what Mason can do and will have more involvement once Mason’s casts have been removed helping us work with his legs/feet.
6. Cheri from Orthopedics – She checked in on Mason’s casts and how he’s tolerating them.
7. Rama the Urologist – He is someone we’ll meet with forever.  Today he asked questions about how Mason is doing with peeing on his own and catheterizing.  We’re supposed to measure how much urine we get at all caths for 6 days and write it down along with other information and turn that chart in so they can see if our cathing schedule is good or needs adjusted.  At our next visit they plan to do a urodynamics test to check how his bladder handles pressure.  He also cleared Mason to be circumcised.
8. Karen the Developmental Pediatrician – She’s in charge of the Myelo clinic and did a check on Mason’s development in general.  She also gave us a prescription for his new diaper rash that seems to be a yeast rash (common with all his pooping). 
9. Rosalind the Physiatrist – Physiatrists maximize what a patient can do and assist the patient in adapting to what he or she cannot, have a full medical degree (unlike a physical therapist, who they work in concert with), and prescribe the therapies a physical therapist will help carry out.  Today she mostly check over Mason.
10. Joanne the Clinic Nurse Coordinator – She also stopped in to say hello and see if we had any questions she could find answers to.

Phew!  It wears me out just writing all that and once it was all done we still had to head over to ultrasound for Mason’s brain/head ultrasound to check on his ventricles.  This afternoon I received a phone call from Renee from Neurology.  Dr. J reviewed Mason’s ultrasound and it looks perfect – the shunt is doing exactly what it is supposed to and his ventricles are smaller.  He’s doing so well they cancelled our visit with Dr. J himself that was to be next week. 

When Do We Go Back to Myelo Clinic, see the Neurologist, etc?  Unless something goes wrong with Mason that we notice, like a shunt malfunction, (which we’re praying very hard will NOT happen) we do not need to go back for 3 Months.  It’s a huge blessing.  We are still going in weekly for the clubfeet casting/treatments for a while yet but one single appointment in a day instead of a whole day of appointments every week is going to be wonderful.  In 3 months we’ll repeat the brain ultrasound, do the urodynamics test for urology, and visit with all these specialists again.