Sleep

The sleep journey continues! We finally decided to return his BiPAP machine to our vendor since we hadn’t been using it for a while now. He’s obstructing less and less at night even while on his back. We still have to lay him on his side for sleeping but he’s doing much better. We think that the Anat Baniel Method (ABM) therapy is really helping his tone and breathing.

Unfortunately, his sleep schedule took a step back these last few months. Shortly before we left for our trip, Félip started a pattern of sleeping in the evening and waking up when we were ready for bed. The melatonin also stopped working at the dose we were giving him. We would give it to him and he would mellow out for a bit and then be wide awake again. This was a huge disappointment. His sleep schedule is the one thing that we think would be beneficial to all of us. If he would sleep well at night and less during the day it would be better for all of his appointments, therapies and any activities. Plus, a bit of extra sleep wouldn’t hurt us either ;).

This isn’t the end! We technically have a lot of room to increase the melatonin we were giving him. Most kids get almost ten times what we’re giving him. We just don’t want to get too ambitious with it or cause any side effects. We’ll also be continuing the sleep conversation with his team and we’ll keep trying to get him into a routine.

Medications

We finished weaning off his Felbamate, one of his anti-seizure medications, in January. This was a huge relief. We want to keep simplifying his medications to a minimum of only what he needs and this was a step in the right direction. With the recent changes before the holidays we’re now down to three anti-seizure medications and the melatonin. This is amazing! He’s never had more than four anti-seizure medications but that combined with a plethora of other things for secretions, acid reflux, etc. gets to be a lot to handle.

The Felbamate was a big one because it used to be given three times a day instead of our typical twice a day for most medications. This meant that he was getting medications at five different times a day! We decided to try to wean the Felbamate because we started it last summer and had no evidence of it being effective. Indeed, we were able to take it off completely without adverse effects.

Now that our schedule is getting easier to manage with changes in medications and feeding we feel like it’s a lot easier to get out of the house as a family and not have to worry about forgetting a dozen different things!

Pre-school

We were made aware that Félip would qualify for Program Unit Funding (PUF). This is a funding that’s available to cover part of or completely pre-school costs for severely disabled or delayed kids in Alberta. With this funding, Félip could attend various facilities that specialize in disabled children of all sorts. They focus on fun learning activities to further development and skills. With Félip turning three next September and his level of disability he would qualify for full funding.

We’ve started going through the steps to have this setup for him come next September. An assessment needs to be made to confirm his level of disability and development. Then, we need to pick an Early Childhood Service (ECS) provider for him. We went to an ECS fair in January where all the different ECS providers were present to answer questions and hand out information. We’ve decided on Getting Ready for Inclusion Today (GRIT) as our provider for Félip. They were really great to talk to and seem to align well with our values. One of the main reasons we chose GRIT is because they offer an in-home based program. We just didn’t feel ready to be sending Félip off to “school”!

This is all really exciting and we can’t wait to see how it’ll all go in September!

Our Trip

At the end of January I had to go for a one week business trip. My company does these one to two times a year where they fly out all of us to spend a week together for team building and retrospectives. Since we all work remote and never see each other in person it’s really great to get to catch up. This time, the company decided it would be in Cancún, Mexico! When we found out we decided to have Robyn come along for a little vacation. Félip stayed at the Rotary Flames House (RFH) while we were gone. You can read more about our trip here.

Félip stayed at the RFH for about 11 days. Since we were going to be out of the country for the whole time we had quite a bit more preparation involved for him. We had to make sure all of his medications were well stocked and he had enough supplies like diapers and wipes. We had to double check that we were covered in various different scenarios of things that could happen to him or us. We had to make sure Jared and Hannah were comfortable with all aspects of his care. We also had to prepare about two weeks worth of blended food for Félip. We prepared individual portions that we froze in plastic containers. Fourteen days (a few extra just in case) of food at four portions a day is 56 total portions and plastic containers! Our blender was up for the challenge and powered through the task. We did however quickly notice that we could only blend a few batches at a time before it would start to get quite warm. We prepared all of the portions during the last week before we left.

The trip was really great and everything went well! This was the first time we ever left Félip at the RFH and actually get out of the city for more than a day. It felt very odd and we missed him incredibly!

UTI & Cold

We got back from our trip late at night so we drove up the next morning and went to pick him up. It was so nice to have him back home with us and have things feel normal again.

We did notice that he was pretty congested when we picked him up but didn’t think too much of it. Once we got home we noticed he seemed to be holding his urine. Then, later on that night, he spiked a fever. A fever is usually a critical sign for us and considering his urine holding we decided to take him to the hospital. We went through emergency and got in to the see a doctor. We did a chest x-ray to make sure he didn’t have anything wrong with his lungs. Since he had a fever and congestion there’s always a chance that he could have aspirated and he could have pneumonia. His x-ray came back clear and we were relieved. We then decided to test his urine for a UTI. It unfortunately came back positive. This was likely what caused his fever. Félip got a prescription for antibiotics and we were able to go home.

Over the next few days he developed more cold symptoms and got both of us infected as well. Our colds lingered on but there was a long week where all three of us were completely miserable. Félip seemed to recover fast and bounced back into action. We weren’t so quick! We did feel amazed however that this was the first time Félip didn’t need to be hospitalized for a cold. We’re clearly making progress!

Appointments

We had most of our regular appointments in January and February. Félip did have his quarterly vision appointment in January. Thankfully everything is still fine and his eyes are healthy. Still no progress on gaining any of his vision but we’ll keep hoping.

Félip did have a haircut in January! His hair was getting pretty long and he was definitely due.

This is the shortest he’s ever had his hair and it looked awesome! At least, he seemed to like it!

As always… Love. Laugh. Repeat.