We’re going to try this thing where we make a blog post to summarize some of the highlights that happened during the past month. We think our friends, family and followers will like the updates and it’ll be like our personal journal for Félip, well, not so personal being on the internet and all but you get the point!

Friend’s wedding

We went to a wedding! It was a blast! The venue was beautiful and we felt right at home. We were all on a huge ranch outside of the city.

Félip was unfortunately coming down with a cold and hadn’t actually slept the night before but he made it through and did great. We were a little nervous attending the wedding with Félip; mainly because of all the prep needed to spend most of the day away from home and the hospital, in an unfamiliar place. We were also a little worried that we might have to run the suction machine in the middle of the ceremony.

Hospital admission

The night after the wedding, Félip’s cold symptoms had gotten worse. He had a significant wheeze and was breathing really fast. He was coughing up thick secretions and was having a hard time sleeping, let alone breathing. We decided to pack up and take him to the children’s hospital.

Félip stayed at the hospital for 5 days during this admission. He was on oxygen for the first few days and he was getting a regular asthma inhaler (Salbutamol). This was the first time he responded to asthma inhalers. We’ve always had a suspicion that he could be asthmatic but never confirmed it. In this case it seems that he might have mild asthma brought on by respiratory illnesses.

Swim therapy

We started swim therapy again! YAY! Félip loves being in the water. In the past he’s often fell asleep in the warm water but lately he’s been much more active. He kicks and wiggles and really seems to enjoy himself.

At these session we sing songs as a group and do activities in the water to stimulate the children’s senses. It’s a very calm, relaxing environment where we also get to meet other families.

Appointments

Other than the swim therapy sessions we also had many other appointments this month. We had our regular monthly pediatrician appointment. We had to go do some genetic testing blood work at the children’s hospital. We had an appointment to get Félip tested for allergies. We had two equipment related appointments with people coming to our home. We also had Félip’s sleep study done this month.

The sleep study was done because Félip has Obstructive Sleep Apnea (OSA). Whenever he falls asleep and is laying on his back he’ll start obstructing which will cause him to stop breathing. This goes on until it eventually wakes him up and he can take a few good breaths. Then, as he starts falling back asleep, he’ll start obstructing again and the pattern could go on all night. Our current solution is to have him sleep on his side. This way his airways don’t tend to collapse as much and he doesn’t obstruct. The sleep study analyzes how bad his OSA is and can also assess possible solutions. During the study, Félip’s whole body is being monitored: oxygen level in his blood, air entry, brain activity, skin carbon dioxide level, heart rate, chest expansion, the list goes on. We were able to capture his OSA on his back, analyze our current solution with him sleeping on his side and even try another potential solution being a CPAP or BiPAP machine. We’ll be getting results back from the sleep study within the next few weeks where we might also discuss the need for a CPAP or BiPAP machine overnight.

Happy Birthday Félip!

Félip turned 2 this month! Everybody was pretty busy on the day of his birthday so we decided to have a family day and go hiking in the mountains. We had brought a small cupcake with us and 2 candles to have a picture to remember. The following week we had a get together with our friends and had a cake made for Félip for the occasion.

We try and make a point of celebrating each and every birthday Félip has. That doesn’t mean we spend a lot on a huge party or gifts. We just want to make the day special and spend valuable time together as a family. Our goal is to make memories that we’ll have forever. To us they’re very important. Every year that we can celebrate his birthday is another year that he’s been with us. We unfortunately don’t know how long Félip is going to live. He could leave us any day, at any point.

Lifts and track systems

We had an occupational therapist and our preferred equipment vendor come into our home this month to discuss installing a lift and track system. This would be used to help us lift Félip in and out of bed, the tub, the living room couch and his wheelchair. As Félip keeps growing we’re straining our backs more and more to move him around the house.

Instead of having a significant track system in the whole house we will opt to have section of track in strategic spots. These spots would include above his bed, the tub and in the living room. We’ll then use his wheelchair to move him around the house. We had an estimate done for these modifications. Thankfully, The government program Alberta AADL (Alberta Aids to Activities of Daily Living) will help cover the lift module and harness, we just have to cover the track parts and installation.

We need a van

We’ve been trying out vans and researching our options since July of this year. With Félip’s wheelchair on order and coming soon we want to try and figure out something before then. Especially considering that getting something new takes a minimum of 6-8 weeks. Originally we were looking at large commercial vans such as the Ford Transit, Nissan NV Passenger and GMC Savana Passenger. These larger vans are around the same price as most minivans and would cost less than half to convert than a minivan. We felt like we would get more flexibility and functionality from a van like this.

We went to an accessible van evening event hosted by the Calgary Cerebral Palsy Association. They had several models of converted vans present with various types of ramps and lifts. We talked to the vendor we had planned to use for our conversion and saw that a converted new Dodge Caravan with side-entry wouldn’t be as bad as we thought. We also got some really good information such as how we can claim a portion of the vehicle and its conversion on our taxes next year.

There’s also the option to buy a used van. The thing with finding a used van is that our choices are limited. Wheelchair accessible vans aren’t the most common thing on Kijiji. Also, most vans we do find have a high amount of kilometers and are usually pretty old. They also retain their value because of the conversion.

All in all we still have some researching and thinking to do. We might end up waiting until we get his wheelchair to reassess and focus on home modifications in the meantime.

What a busy month is has been! We hope you have had an amazing September.

As always… Love. Laugh. Repeat.