Today was a day full of doctors and therapists for Mason - Myelomeningocele Clinic! I have to say I’m glad these appointment days only come every so often because it is always information overload and takes me a while to process. Part of that processing is writing it up here on Mason’s blog, so here goes!
I woke Mason up just before 7:00am to change his clothes, catheterize, and feed him a bottle before we needed to hit the road. Grandma arrived to stay at home with Mason’s 6 older siblings and he was a bit jealous. By 7:30am we were in the van and driving to Children’s Hospital an hour away. Halfway there Mason was done with the carseat and made his opinions known – loudly. We hit some morning traffic but made it to our exit at last.
Mason’s first stop at Children’s today was the Ultrasound department. He had a brain ultrasound to check the fluid level in his ventricles and make sure the shunt is working well since the revision at the beginning of the month. Then he had an ultrasound on his bladder and kidneys to see how those are doing.He was rather interested in the kidney ultrasound as you can see.
Next we walked back across the hospital to Myelo Clinic, signed in, and sat down to wait. We chatted with a few other myelo patients including a teen boy Rodney who has a similar lesion level as Mason. It was so nice to be able to ask him and his mom questions about what life had been like growing up so far. We found out that even though Rodney is in a wheelchair with no leg function one of his favorite ways to exercise is swimming. His mom said it took a while to build up enough upper body strength to swim without being able to kick, but totally doable.
The nurse finally came to take us into clinic. First stop is a scale to be weighed – Mason is just a smidge over 21 lbs. Then we were taken to our room, where we would stay for the rest of the morning. The mayhem began as doctors, therapists, and nurses stop in at random. I’ll try to explain the main visitors we had today:
This woman will be working with us on mobility as Mason grows. She’s the one who will evaluate and make recommendations for equipment like leg braces and a wheelchair, with input from all the other medical staff on Mason’s team. After evaluating what Mason can do she asked what we were told Mason’s lesion level was, where his bones were open. Mason’s begins at L2 (lumbar vertebra 2) and goes down into his sacrum. While the opening gives you some idea of what nerves will be impacted, a child’s functional level can vary. She said that it looks like Mason functions on a higher (worse) lesion level, either L1 or T12. The expectations with that functional level are lack of sensation (sense of touch) from the hips down (butt, low belly, and legs).
She then went on to explain more of the mobility aspects that affects. It is likely that Mason could learn to walk some with extensive bracing (braces from toes to waist). It’s not going to be something he would be able to do beyond childhood most likely because the energy expenditure will be a lot the older and bigger he is. It has some drawbacks. He would not be independent with the bracing because it would limit him to standing only, and someone would have to help him get in the bracing. Once in it he would not be able to sit down, bend and pick things up off the floor, or sit to play. So it has some major limits. He wouldn’t be able to walk quickly and play while moving, he would have to use a walker of sorts to help. He could stand at a table or counter to play though.
She said some children are really driven and want to stand up. Others would rather use a wheelchair and get around as fast as or faster than their peers. With a wheelchair he will also be able to get in and out on his own, down the play on the floor when HE wants to. He’ll become much more independent, even as a toddler. As a doctor her preference was to follow the child’s lead. If they want to try walking we go that way, if they don’t, we don’t. So it should be interesting. She also said with a lot of pressure from the doctors in Myelo Clinic we might be able to get a wheelchair ordered for Mason when he’s between 18mos and 2 years old, but the wait time once it’s ordered will be 6 months or so. She was impressed with the idea of Mason’s bumbo wheelchair and thinks it will be a great help to him when he’s ready.
This doctor said the scans of Mason’s bladder and kidneys look great. Everything is as healthy as it’s been, so the cathing we do 3 times a day is helping protect his kidneys. We’ll make no changes to this for now.
I suspected it was time to lengthen the bar on Mason’s foot brace so I brought it along. He only wears it at night now. I was right, they lengthened the bar and he should be set for a while. The next thing to watch for is outgrowing the shoes themselves.
We came today with specific worries. Mason’s head is still healing from his shunt revision earlier this month. The incision was doing really well with just one stitch trying to work its way up through the skin that was closed over it and out. We had that with his abdomen when he was teeny and it came out just fine. Unfortunately we woke up Wednesday morning to red swelling around this stitch and a bit of pus trapped under the skin. The pus came out later that day but it is still red, swollen, and tender and that stitch is still sticking partway out of his head.
After looking it over we’ve been given a 2 week course of antibiotics to fend off infection while trying to give his body time to get the stitch out. If things get worse the doctor can go in and cut it out but then he’ll have to be sewn shut again and could repeat the problem. We’ll see. For now we’re praying his body handles things and the infection gets better with the antibiotic. We’ll also be washing his infection site with a hydrogen peroxide/water solution for a few days.
They looked at today’s brain scan and everything looks lovely. A lot less fluid in ventricles compared to the scans when he came in at the beginning of the month with shunt failure. Yay!
Ahh, now we get to the things that make my head hurt. Mason is doing amazingly well. He’s rolling over (which amazes them) and using those arms to push up on the floor. Unfortunately his core is still not strong enough. When we practice sitting he props himself on both hands and is very swaybacked – like this:He occasionally will prop sit with just one hand and reach for toys with the other but generally it is all he can do to stay mostly upright. He collapses forward often.
This leads to a number of issues developmentally. He is 7.5 months old. There are a lot of hand and finger activities he should be practicing now that he can’t even attempt, like transferring toys from hand to hand or raking the floor to grab small objects. If he’s using his hands to hold himself up then they can’t do anything else with them.
Currently Mason has a physical therapist come to our house once every 3 weeks through Help Me Grow. Their focus is to train the parent to do exercises and we do those diligently. However we’re moving into needing some special equipment and more frequent therapy that adjusts with him weekly and Help Me Grow won’t really provide what Mason needs. The doctors would like to have Mason go see a pediatric physical therapist at least bi-weekly, if not weekly. They would focus on working his core. They would still teach me things to do but would have more ideas, options, and could adjust frequently as Mason improves or as things don’t help. We’ll find out next week if there are any pediatric physical therapists in my town. So far it looks like there is not. We will probably need to travel into the big city an hour away every week for therapy.
This leads right into Mason’s OT visit. Their focus is on arms, hands, core, and head. Lo and behold Mason is not where he should be in these areas because his core is too weak to support him while he works on upper body skills. Yes, it’s a vicious cycle, when one thing is off it affects several developmental areas. We really need to strengthen Mason’s core so he can move on. They want to see him do OT biweekly or weekly. As far as we know there are no pediatric occupational therapists in my town. They’re checking and will get back to us next week. Most likely we’ll head an hour away to the big city for this too, possibly piggy backed with the physical therapy appointments. The therapists PT/OT both gave me exercises to work on with Mason at home, some easy, others more difficult. One series of exercises he really needs requires a roll or peanut ball to sit and balance on. It’s a big core workout and will really make him work. Thankfully Amazon carries a peanut physiotherapy ball in Mason’s size. When we came home today Grandma heard about it and ordered it right away. It is the yellow one in the picture above. Thank you Grandma!
She went over all the plans for Mason. She also talked with me about his nutrition and exercise. Because Mason will not burn as many calories in everyday play with half his body not working we have to be very intentional about encouraging active play. We also have to pay attention to his nutrition, avoiding a lot of empty calories as he begins solids(choosing a whole fruit over fruit juice for example). We finally arrived home six hours after we left. I think both of us were glad to be home!