Finally, after months of me bugging all of Madison’s therapists about the subject, we officially got the process started in getting her some very much needed adaptive equipment! Madison has very low tone, and still can’t completely hold her head up on her own. She can’t sit, let alone stand, yet being in these positions is crucial to her bone and muscle development. So what do we do? We get her equipment that will provide her body the support it needs to sit and stand correctly!
Last month we had an appointment with a physiatrist, which is a doctor that specializes in physical medicine and rehabilitation. We went over Madison’s medical history and she evaluated her to see what sorts of equipment we think she will need. Madison has a great range of motion, and no spasticity, but does suffer from very low tone. The physiatrist wrote us a script to get her evaluated at a rehab tech clinic for various equipment including a seat, stander, gait trainer, and bath seat. She also suggested AFOS and a SPIO to be used with the stander, which are braces to help her ankles and feet, and trunk, get the support they need.
So last week we finally had our appointment with the tech clinic! While Maddie can sit in an average high chair (as long as it has a high back), she doesn’t get the proper support she needs. When kiddos like Madison sit without proper support they have to use so much of their energy and focus on simply trying to sit, that it can make it quite hard for them to focus on the act they’re sitting in the chair for, like eating or playing. With proper lateral and head support, Madison can sit tall and strong, allowing her to focus on the toys or food in front of her. She has the freedom to use her arms and hands more actively because she doesn’t need to worry about holding herself up.
The adaptive chair we looked at can click into both a stroller base and adjustable seat base, as well as recline to help with feeding, respiratory, and visual orientation. There are options for support for her head, trunk, thigh, and hip, allowing us to design it in a way that will truly help Madison’s deficits specifically; for her head and trunk support are key! It was so nice to see her sitting tall and straight in a chair, instead of her head flopping to one side or arching her way into an uncomfortable position.
We also looked at standers and gait trainers. A stander is crucial to Madison’s development and can help her with bone growth, pulmonary function, tone, and intestinal motility- key for someone with chronic constipation like her! Standers can come in one or multi positions. A supine stander is ideal for someone just learning to stand with little head control. It starts in a flat position with a child on its back and will angle gradually until the child can tolerate standing in an upright position. A prone stander gives the added challenge of working on trunk and neck muscles, as it supports the front of the body allowing the child to lean forward. We’re leaning towards a multi position stander for Madison which will allow us to start supine, and then switch to prone as she builds her strength.
While a supportive seat and stander are definitely our top priority for Madison, she’ll eventually be needing a gait trainer as well. A gait trainer is a wheeled device that helps someone who can’t walk, learn to walk independently. We’ll be going back to the tech clinic next week for a follow up appointment to meet with the vendor and order everything we need for miss Maddie.
We also took it upon ourselves to order her a portable adaptive chair that can connect to a floor base, chair, high chair, grocery chart, swing, etc.. The seat has a high back with head support and trunk support and we should receive that this week! This will be key for traveling and getting her something to help give her proper postural support at home until we get the “fancier” goods.
It’s kinda weird to be excited about this sort of stuff, but we are. Do I wish Madison was able to do all of these things without so much support? Of course. In some ways it breaks my heart that this is the path we’re going down. But it is. And since it is, I’m allowing myself to be happy about the fact that she’s going to get all of the equipment she needs to make her life a little easier. After everything she’s been through she deserves some easy. And I hope that by putting her body in these new positions her development will pick up, and her interest and alertness will too! This year has started off a bit rocky, and we’re still trying to get control of her seizures with the CBD (update on that to come), but for now we’re crossing our fingers for some positive changes that adaptive equipment could bring! Wish us luck!