Assessment & pre-school

As mentioned in our previous update, we’re going through steps to get Félip into a pre-school program starting in September. This is a government funded program to help with the development of children with challenges and disabilities. We’ve chosen Getting Ready for Inclusion Today (GRIT) as our Early Childhood Service (ECS) provider. GRIT is awesome because they offer both in facility and at home program options.

We started going through GRIT’s intake process in these last two months. It involves a lot of paperwork and getting up to date assessments of Félip’s level of development and disability as well as general sensory assessments. We’re not quite done with everything as we had to get a referral and schedule a hearing test. We did get his development assessment, which focuses on speech and language, done through the Child Development Centre (CDC) with whom we’re already getting Félip’s physiotherapy. Unsurprisingly, he scored quite low on all categories. His assessment indicates a “profound delay” for his comprehension and communication. His current state of development is that of a young infant. This might be a sad thought, but we’re encouraged by the progress he’s been doing in the last few months. He’s definitely getting better and that’s all that really matters.

We also went to visit GRIT’s facility for an afternoon. We got a full tour and got to sit in on one of their regular music therapy sessions! Félip loves music, and since GRIT’s facility is close to our house, we might try to go once in a while. We’re really happy with GRIT so far, everyone is so nice and supportive and the overall atmosphere at the facility is very relaxed.

Respite

We finally set up respite in April! This involved finding a respite worker or caretaker for Félip as well as setting up a respite allowance in our Family Support for Children with Disabilities (FSCD) contract. Finding a caretaker was the hardest part. We needed to find someone we could trust to watch over Félip and take care of his many needs. We needed someone who could handle seizures and how to react to them.

We were incredibly fortunate to get a referral for a respite worker/aid that works with two other boys Félip’s age. This made things so much easier and took away a lot of stress for us. Just knowing that she’s worked with similar kids with similar complexities was convincing enough. We got her to start coming in twice a week to spend 4 hours with Félip. We currently try to get her to come for an evening in the week and an afternoon on the weekend. In the evening she can do his whole routine which is a nice break for us. She’s been really amazing so far and we’re really appreciating having respite.

It’s funny to think that we went 2.5 years without any respite at all. Every other parent and Félip’s team kept recommending it but we just felt overwhelmed with the whole thing. Respite allows us to keep a balanced lifestyle and helps us accomplish more. Taking care of Félip and all of his needs is a 24 hour job. We don’t sleep very much at night, he still doesn’t have a schedule of any kind, we’re always running around to countless appointments or spending days at a time at the hospital, he can’t be out of sight and we can’t leave him with a baby monitor, even when he’s sleeping. Respite allows us to have 4 hours of dedicated time to accomplish a long overdue task or get out of the house just the two of us.

Medication

We had a follow-up appointment with Neurology during these two months. We went into the appointment with the desire to change more of his anti-seizure medication. His seizures have been really great lately, probably the best we’ve ever seen. But, we still believe that some of his 3 current anti-seizure medication aren’t doing anything. We could be wrong, but we think it’s worth trying to wean them and see what the results are.

We’ve also been thinking about increasing his Keppra (one of his anti-seizure meds). He seemed to react really well to Keppra when it was started and his seizures seemed to improved dramatically. We thought maybe we could squeeze a bit more effectiveness if we went up on his dose.

So, after discussion, we all agreed that we would start weaning his Topiramate and increase his Keppra. We also discussed another new medication that would be available for us to try at some point in the future.

Van

We finally decided to upgrade to a bigger vehicle for Félip and his equipment. We bought a used 2016 Toyota Sienna in April. You can read the blog post explaining our purchase here.

We’ve been thrilled with the van and love how easy it’s made getting out of the house. We can easily pack everything we need for a day trip including all of his equipment. He’s also sitting in a much better position and always seems to love going for a ride!

Appointments

We had our usual follow-up appointments these last two months. We did decided to start distancing our pediatrician appointments now that things are so stable and his health is improving. At this point most of his clinical appointments are only every few months or on a quarterly basis. It’s definitely nice to reduce the amount of running around we do.

We also started swim therapy again! Yay! It’s a little sad that this is his last session of swim therapy at the children’s hospital. After a certain age, once children are eligible for pre-school, they stop being followed by CDC which is where the swim therapy program originates from. We’ll probably try to go swim at a community pool with Félip once in a while since he seems to enjoy it. We were also thinking of maybe getting a deep kiddie pool for the yard this summer.

As always… Love. Laugh. Repeat.