Well, today was Myelo Clinic and it’s certainly never dull. It’s also never short. Today Mason saw fewer specialists than usual as a few were out or didn’t need to follow up on him yet, and another is one we’ll see later this month at a separate appointment. From what I remember here is who we saw and what we talked about.
Physical Therapy – She is pleased with the progress Mason has made in trunk stability and upper body strength. She watched our videos of Mason using the Bumbo wheelchair and the dynamic stander and agreed it is time to order a wheelchair. (Yay!) She gave us some new stretches to work on for his legs to keep things stretched out at hips and ankles.
Occupational Therapy – She is happy with his weight gain despite the fact that he is not eating true solids yet. She gave us some specific sensory play to work on with Mason for his face and mouth to hopefully work toward eating more than purees. We’ll reevaluate in 4 weeks if he’s made no progress, later if we’re seeing progress.
Brett the Wheelchair Guy – He was pulled in to get us started toward ordering Mason’s first official wheelchair. We are going to set up an appointment at the shop to look at and try out several different chairs, figure out what we want, and also possibly work on ordering Mason a dynamic stander too. Insurance won’t cover the stander at all, so we’re going to see what we an figure out money wise. (Anyone have a money tree? LOL. We will need around $3000.00, a bit less hopefully as we won’t be buying retail from the company itself.) We only have the borrowed dynamic stander for 3 months or so and I think Mason will rebel when we have to give it back, so we really want to get moving on getting one of his own.
After we visit the shop we’ll come back to Myelo Clinic for a wheelchair fitting, getting measurements so they can order one specific to Mason. Then it will take up to 6 MONTHS for his wheelchair to be ready. Sigh.
Urology – Everything is going fine here. We are to keep cathing 3 times per day and in 6 months we’ll do a renal ultrasound to check on his kidneys again and possibly another urodynamic study to check pressure in his bladder/etc.
Neurosurgery – Everything looks lovely. He’s been surgery free for almost 4 months now and we hope that his shunt continues to work well for years on end. We went over the brain and spine MRI in more detail too.
Developmental Pediatrician – She’s pleased with Mason’s overall development. He’s on track for most things and ahead in some areas. It helps that he’s got a houseful of siblings to motivate him in mobility, social skills, etc. He wants to keep up and so he finds a way.
Case Manager Margaret – She’s our liason to coordinate all the specialties and she’ll help us get things moving on the wheelchair clinic as well as any other visits we need.
Mason was thrilled that Daddy got to come along to Myelo Clinic today. It was so nice to have extra hands playing with him and consoling him as so many strangers checked him over or tried to get him to show off his skills.
People we did NOT see today:
Bracing – Mason’s braces are fitting well and he is having no sores so we didn’t need anything adjusted.
Plastic Surgery/Craniofacial – We see them later this month to check how Mason’s head is shaping up as well as to look at surgery to smooth out Mason’s back scar where the skin sticks out in tags that are super sensitive (and right where waistbands go).
Physical Medicine – Wasn’t in today but she’s who we’ll work closely with as Mason gets into his wheelchair. She specializes in the mobility end of things and works closely with our physical therapist and others.
Orthopedic Surgeon – This is the person who treats Mason’s clubfeet. We had a checkup with him last month and won’t see him again for several months. He is also one who is watching Mason’s spine for curvature (scoliosis) which is more common with spina bifida as severe as Mason’s is.One last picture. Mason was so tired by the end of clinic that he fell asleep mid-exam by neurosurgery. He simply didn’t care anymore what they did to him or how many people were talking in the room. He stayed asleep as we put on his coat, transferred him to the stroller, went through the hospital, outside, in an elevator, and even as we put him into the carseat. He did not bother waking up until we were nearly home. Poor little man!