It’s been almost 8 months since Félip’s fundraiser! Once again, a sincere thank you to everyone for the $11,800 we ended up raising last fall! We’ve been holding on to the bulk of the money in a savings account as we tried to figure out our house and vehicle modification needs. Now that we think our plans are finalized we want to share what we’ve spent some fundraiser money on in the last several months and our upcoming plans. As mentioned in our first thank you post, we want to keep you all updated on how we spend the money and how it’s going to benefit and help Félip.

Great news!

We got news a few months ago that a charity we had applied to for home modifications, Access for Everyone, approved our outdoor porch lift! We weren’t expecting this at all! They’ve covered the full price of the new lift and the installation in our backyard! Our unit was already shipped and is waiting at the Calgary warehouse until we’re ready to move forward (which should be soon).

This is such a big relief for us and we’re so grateful! Especially since we haven’t been able to qualify for any other special funding from charity organizations such as President’s Choice or other government programs. We were originally planning for the fundraiser money to be the main source of funding for the lift. Now that it’s been covered by the charity, we can use the fundraiser money for even more equipment for Félip!

Ongoing costs

We decided to use money from the fundraiser this year to cover our “deductible” for Alberta Aids to Activities of Daily Living (Alberta AADL). AADL is the government program that provides the most funding support for Félip’s equipment. They only cover certain specific items but they’ve paid for his wheelchair, home and bath seats, ankle-foot orthosis (AFO), standing frame, BiPAP machine, etc. Every year, when we purchase AADL covered equipment we need to pay a shared cost amount (25%) up to a maximum of $500. This year we got his AFOs and wheelchair from AADL which are quite expensive and we reached the maximum cost shared at our first purchase.

A special pillow

We were talking to other parents about the worries of seizures at night. Our Anat Baniel Method (ABM) practitioner recommended the Sleep-Safe® Anti-Suffocation Pillow and we decided to go ahead and order one. This pillow is made of different layers of porous foam that also has larger holes through them to provide air flow. Even with your face buried in the pillow you can still breath (it works! We tried it!). For nighttime seizures this is definitely a product that offers a little more peace of mind.

We still haven’t used it for Félip simply because we weren’t expecting it to be so large and stiff. We can definitely see ourselves using this as he grows older. We’ve contemplated removing some layers to make it thinner but we feel like that could affect its effectiveness.

Pool time!

We take Félip to water therapy at the Alberta Children’s Hospital (ACH) every week most of the year and try to go to local pools on our own time as well. We used to have a Swimava neck ring for the first few years for him, which he outgrew. Swimava sadly doesn’t offer bigger sizes for their neck ring. Their other models are for more developed kids as an underarm floating ring.

Our ABM practitioner also recommended the WaterWayBabies System. This is basically the same thing but WaterWayBabies go up to almost adult sizes! We ordered a medium size for Félip and couldn’t be happier!

New van

We bought a “new-to-us” 2016 Toyota Sienna a few weeks ago! You can read about our decision to buy this regular minivan as opposed to a wheelchair accessible vehicle in this blog post.

With the news of our outdoor porch lift being covered by a charity and our decision to buy a more affordable regular minivan we thought long and hard about the rest of the fundraiser money. We decided to put a $5,000 down payment from the fund on the van to help lower our financing. It made a significant difference in our monthly payments and helps with our budgeting.

The van is such a big improvement in our daily life traveling with Félip and it makes us feel like we can do so much more. We’re also hoping that’ll be a good solution for 5+ years for us, at which point we’ll probably be looking at a fully wheelchair accessible converted vehicle.

We chose the number $5,000 in order to still have some money left from his fundraiser for future equipment. At this point, with the van and porch lift figured out there aren’t anymore large expenses that we can foresee for the next few years.

Future plans

Although we think most of Félip’s large mobility equipment is taken care of for now, we have our eyes on a few pieces of equipment:

• He’s quickly outgrowing his special tomato brown seat insert. There’s another size up and we’re hoping we can keep the same base for it.
• The track system for the house we’ve talked about in the past is still in our minds (we’re just waiting until lifting him becomes too hard for us).
• We think he might need a new, bigger special needs car seat within the next year.
• We’re also trying to brainstorm something nice for him to lounge outside this summer, like a safe hammock or something.
• Lastly, we know he’ll eventually need another bigger stroller down the road (hopefully not too soon!).

We thankfully still have over $4,000 left of the fundraiser in our savings account!

Thank you once again for everyone’s support! As you can see this money is making a huge difference in ours and Félip’s life! We want to be able to provide everything he needs in life to strive and be his best. This money has allowed us to do so and not feel stressed as much about making ends meet.

As always… Love. Laugh. Repeat.