Ankle Foot Orthoses

We had 2 different appointments this month to get Ankle Foot Orthoses (AFOs) casted and built for Félip. These will be helpful to support his feet and ankles when we use them in his standing frame. Félip doesn’t currently have any flexing or extension issues with his legs so we don’t need to wear them in other situations.

Anat Baniel Method

We started an interesting therapy this month; the Anat Baniel Method (ABM) named after it’s founder, Anat Baniel. This is a very soft and effective therapy based on neuroplasticity and NeuroMovement.

We were referred to the therapy and a practitioner in Calgary by another parent who attends our swim therapy sessions at the hospital.

The preferred way to follow this therapy is to attend sessions on a monthly basis. Sessions are usually 1 hour twice a day for 5 days straight. This scheduling is preferred to try and take full advantage of neuroplasticity and have participants keep building upon what they learn throughout the sessions.

Félip seems to really enjoy it and we’ve been seeing some great improvements! He’s discovering some new movements and is getting more active. It makes us feel really encouraged and hopeful for the future!

The therapy has a long list of potential benefits and is applicable to anyone. People suffering from physical injuries, movement disability, motility issues, developmental issues, etc.

Félip’s practitioner in Calgary is Renee Gray and she runs Move Integrate out of her home. We really like her and feel comfortable with her. She’s caring, understanding and very professional.

Rotary Flames House

The Rotary Flames House (RFH) here in Calgary is an establishment that provides hospice and respite care for families of children with palliative diagnosis. What that means is that they can provide care for and take on children with severe illness and disabilities (as long as they have a palliative diagnosis) and give parents a chance to rest or travel. Another way to utilize their service is to have your whole family stay there with the child. Which can be nice since they have a chef that prepares all your meals and you have a dedicated room for you and your child.

The atmosphere in the house is very cheerful and relaxing. There are nurses, nurse assistants, doctors and volunteers on site to take care of the children. They always have a bunch of fun activities planned and keep them entertained.

We’ve been bringing Félip to RFH as a form of respite for ourselves to be able to rest. He’d been there last in July and we brought him in for 5 days in October. During those 5 days we made a weekend trip to Canmore in the mountains and stayed the night with Jared, Hannah and their son.

Sleep Study Results

We got the results for the sleep study Félip did in September. We decided to go ahead and get him a BiPAP machine to hopefully mitigate his Obstructive Sleep Apnea (OSA) further.

The study results were very interesting. They were able to gather lots of data and analyze his sleep under a few different conditions. We had left him on his back as he started falling asleep to be able to get data when he fully obstructs and stops breathing. We turned him to his side, which is what we had been doing at home to help with his OSA. They then were able to get him on CPAP and later on BiPAP for some time in the night. They were able to see that sleeping on his side was an acceptable solution to mitigate his OSA especially when compared to the CPAP which showed very similar results. The BiPAP setting, however, showed slightly better results and it was the only time he was able to drift into his deeper dream sleep.

We’re really happy with having chosen to get the BiPAP machine. We think his OSA might have gotten worse since September or might simply be worst certain nights. We often can hear him pause his breathing for an extended period of time before he finally takes another breath. We’re also hoping that running the machine at night might help him get into a better sleeping routine/schedule. He rarely or rather never sleeps a full night and often even falls asleep in the early morning.

Improvements

We feel like Félip just keeps improving lately. He seems much more alert, active, focused and talkative. There’s really nothing like the sound of his voice to sooth our problems away. The ABM therapy we started this month can make a big difference in alertness and focus. It’s even been said to be helpful for visually impaired children like Félip where the root of the problem seems to be neurological.

Appointments

We always have our usual pediatrician appointment and a few errands such as picking up his feeding tube supplies. The ABM therapy gave us a busy week running to two appointments per day and a few more hospital appointments in between. Fortunately our ABM practitioner lives a few minutes away from our house!

We also had an appointment with our Neurology team where we decided to attempt to wean off one of his anti-seizure medications since he’s been doing so well. It’ll be a long process and we might not be able to take it off completely but it’s worth a shot!

We met with Félip’s dietitian and discussed our wanting to change him to a blended diet. We’ve heard great stories from other parents and would just like to be able to provide him a healthy wholefoods plant based diet. Our decision is also supported by doctors on our team since dairy based nutrition (like his current formula) can possibly affect his immune system and secretion management. We’re really excited for this change but it will certainly take time to transition. He’s been on formula for most of his life and his gut isn’t used to wholefoods. We also have to manage everything through his feeding tube which will bring it’s fair share of challenges.

It’s been a busy month but it feels like things are calming down. Winter is coming… so we’ll be spending most of our time indoors all cosy and cuddled up.

As always… Love. Laugh. Repeat.