We haven’t had time to write the November update yet and it’s already January! So, we decided to combine November and December into a single blog post.

Enjoy!

Wheelchair

We finally got his wheelchair! We originally took measurements and placed our order for Félip’s wheelchair back in August. These things typically take several months to go through the paperwork and get ordered and assembled.

It’s made a big difference at home. This is now our go-to chair for Félip. It’s so nice and comfortable for him with the right amount of support. The tilt range for the chair is amazing too, we can accommodate any situation!

We haven’t been traveling with it too much. It’s a lot heavier than his stroller and doesn’t fold as much. We bring it with us when we go somewhere where we might need a seat for him. When we get an accessible vehicle for him we’ll be able to tie the chair down in the vehicle which will be super convenient!

Sleep

We got his BiPAP machine in November! We had such high hopes for this to be a good solution for his sleep but honestly, it’s been a struggle so far. He tolerates having the machine on once he’s asleep but he wakes up after having it on for just a few hours and then we have to take it off and he remains awake for another several hours.

In the beginning this pattern of only being able to have the machine on for a few hours wasn’t so surprising. He’s never had a good sleep schedule and this was a sleep pattern we’d been dealing with for a few months now. He would only sleep for a few hours at a time throughout the whole day and night. This meant that he would often fall asleep either very late (like 3AM late) or somewhat early, but then wake up a few hours later.

We decided to try to address the issues with his underlying sleep schedule. We’ve never really brought this up as a concern to which we wanted a solution but it’s now become very hard to manage. It’s one of those things where we thought it would get better on its own with time.

We heard from other parents about melatonin and how it helped their kids. We brought it up to our pediatrician and she approved of its use and said she uses it with some of her other patients. We got the okay from the rest of Félip’s team and decided to give it a try.

Melatonin is deemed a “natural” remedy. Our body naturally produces melatonin on a defined cycle through our day. This hormone is what makes us feel sleepy. Unlike other solutions to sleep issues, it only helps people fall asleep, not necessarily stay asleep.

Félip’s sleep issues aren’t as simple as with other kids. We’ve tried countless remedies and routines to entice him to fall asleep, which have all failed. His blindness can actually prohibit normal or typical melatonin releases in his body. Our bodies are usually tuned to day (light) and night (dark) schedules which regulate melatonin production. Furthermore, his genetic disorder, daily seizures and medications can, and most likely do, affect his sleep.

We started melatonin in December and so far the results are amazing! We give a very small dose to Félip and within 30-45 minutes he starts to wind down and fall asleep. It’s been great combined with the Anat Baniel Method therapy we’ve been doing. He’s now mostly awake for the whole day and falls asleep at a consistent time at night after he’s gotten his melatonin. This is the first time we’ve been able to keep a schedule with Félip and have him sleep at night! We’ve been feeling more rested and energized since.

Now, for the BiPAP machine, the puzzle continues. We’ve tried it again a few times since we’ve introduced the melatonin. Now that he sleeps consistently for 6-9 hours we thought the BiPAP would make things even better. Unfortunately, he still wakes up after a few hours with it on. We’re now wondering if there’s still enough value. Now that his sleep schedule is so much better the only leftover concern is when he pauses his breathing at night. Every decision we make for Félip is about balancing the pros and cons and making things better and easier for him. This still needs to be discussed.

Surgery

Félip had his surgery on December 9th and it went really well! We were so relieved to see him so happy and talkative after coming out of the operating room. This was Félip’s third surgery. We were nervous with this one since the last one had some complications post-op. We took many precautions this time around and had all the teams fully informed of possible complications and his various symptoms from his disorder. We met with the anesthesia clinic earlier in the week and came up with a detailed plan of how to proceed with the anesthesia, pre-op and post-op procedures to best fit Félip’s condition.

This surgery was very simple and noninvasive. No incisions and no painkillers after the fact. We were simply changing his g-tube port from a PEG to a MIC-KEY button (see image below).

This should be Félip’s permanent setup with this MIC-KEY button. We can simply change the button itself every few months.

Diet

We had been trying small amounts of purees in November until we replaced a whole formula meal during the day. Then, we finally received our high speed blender from Blendtec. By this point we had been able to try out various different fruits and vegetables to get Félip’s gut used to real food. We met with Félip’s dietitian at the hospital to figure out his current daily requirements and discuss transitioning.

Félip is now on a 100% wholefoods diet! No more dairy based formula and so far no more daily dose of laxative either! We’ve incorporated natural foods rich in fibre to keep his bowel movements regular. We took a little longer to transition to make sure Félip was tolerating everything well but he’s been on a completely blended diet for at least 2 weeks now. We’re really excited for this change and are so happy about being able to make his food ourselves!

Stay tuned for another blog post on our food and feeding journey with Félip!

Santa

We took Félip to see Santa last Christmas at one of the big malls here in Calgary last year and decided to do it again this year!

The Santa Claus at the mall was amazing and even took a picture with his head poking through Félip’s wheelchair handlebars (his idea)!

Christmas

We were invited to spend Christmas with Jared and Hannah’s families this year. We spent the holidays by ourselves last year, so we gladly accepted. Besides, we’ve come to consider Jared, Hannah, Harvey and their families as our own extended family.

We had so much fun playing games, catching up and enjoying a nice Christmas dinner!

Appointments

We pretty much just had our regular appointments in November and December. We’re still doing the Anat Baniel Method therapy, although, in November we only did one full day instead of 5. Félip’s practitioner got sick and we didn’t want to take any chances. We did have a full week in December though, which was nice.

We’re slowly starting to distance appointments as Félip keeps doing well and getting more stable. We do as much as we can by phone as well when it’s just simple questions or updates.

As always… Love. Laugh. Repeat.