What a day! Today Mason had his second ever Myelomeningocele Clinic. Myelomeningocele is the specific type of Spina Bifida Mason has, and the most severe. While he and Mommy hung out at Children’s Hospital his brothers and sisters spent the morning honing their Jedi skills with Grandma in celebration of Star Wars Day. May 4th is Star Wars Day and the typical greeting is “May the 4th be with you”, an adaptation of “May the Force be with you.”
Mason saw a lot of people in clinic today so I’ll try to go through the major ones.
Physical Therapist – After asking if we had specific things we were working on or any concerns she put Mason through quite the workout. We came away with a list of exercises and stretches to do:
- Neck stretches to loosen up the right side.
- Sitting exercises to strengthen trunk and neck.
- Leg stretches to loosen up his knees.
- Hip stretches to loosen up hips and thighs.
- Rolling exercises (back to belly and belly to back) to encourage him as he is trying to roll, training him of the most efficient way to roll without the use of his legs.
- Side laying playtime, which we’ll have to prop his brace with pillows if we want to do this.
We are also to start having the physical therapist come into our home once a week instead of once a month.
Neurosurgeon – Mason’s head ultrasound from Monday looked great. His shunt is working beautifully. We went over the plagiocephaly (misshappen head) and what we’re currently doing to help with that. Mason also has a funny skull. His sutures and fontanels (soft spots) are doing fine, but he has a floating piece of bone in his anterior fontanel that is not yet part of any major skull bone. His soft spot there is also unusual because the front edge is in a V shape. Ultimately all those bones and sutures will grow together. Neurology just wants to see Mason in 3 months for another head ultrasound and checkup.
Occupational Therapist – She, too, asked lots of questions and gave Mason a workout. Her focus right now is on trunk strength and arms/hands. Mason is about the size of an eight month old in height and weight. That will make learning to roll over, sit, creep, and crawl more work (on top of his SB issues that also make those things more work). He will need extra strength in his trunk and arms to compensate.
Mason is already very social and interested in moving. He tries to creep when on his tummy, pulling with his arms. However, he also has yet to really relax his hands. He usually keeps them clenched into fists and does not really try to reach for or swat at things yet. We’re going to start occupational therapy every other week to help work on trunk strength, creeping/movement, and using his hands and arms. The Occupational Therapist will also come to our home, probably on a different day that the physical therapist so Mason isn’t too tired to work with each.
And, of course, I was given a list of things to work with Mason on daily.
Between PT, OT, and the almost weekly other medical appointments we’ll have medical things going on three of the five weekdays a lot of the time. Should be interesting!
Urologist – Dr. R came in to go over the urodynamics study and renal ultrasound with us. So far everything looks good with Mason’s kidneys so we’re to stick with cathing him 3 times a day. The great news is we don’t need to begin Ditropan. That is a bladder medicine that helps if urine is refluxing into the kidneys and doing damage, but it has side effects we really don’t want to deal with if possible. Mason gets another renal ultrasound and checkup in 3 months.
Developmental Pediatrician – This doctor goes over all the other doctor’s reports and also has her own things she checks, including Mason’s skin. Mason currently has two skin issues, neither serious at the moment. First is his Eczema, which is on his elbows and all over his head. We’ve been actively treating it with cream and heavy-duty lotion, so it’s not too bad at the moment. It gets worse with every bath. The second issue at the moment is heat rash. Behind Mason’s knees, which don’t straighten, with all the cute chub he has, the skin is getting hot with the warmer weather and heat rash has started. The plan for now is to use baby powder or cornstarch regularly to help keep it dry back there.
It was a good day full of ideas, suggestions, questions, and information. I think my head is about to explode – it seems like there is always so much more to figure out, work on, and learn.
Next week Mason goes to the developmental opthamologist to check out his vision. Hopefully all is normal and we can mark at least one doctor off our regular list!