Heading home

Things are looking up. We are heading home in a couple of hours. Zoe was off oxygen all yesterday. She was on a little overnight for a sleep study- unfortunately she didn't cooperate and stayed awake until 3:00 in the morning(the study ran till 6AM). She has been a tired little girl today : )

We decided to leave the NG tube in for a little while longer, just to make it a little easier on her (and us) to stay hydrated and get her meds in. We will still have to revisit the issue of home oxygen at night for Zoe's sleep apnea (great, another new dignosis!) and look at putting a Port in for IV and bloodwork access in the future. We also need to plan Zoe's eye surgery (they are planning on closing Zoe's tear ducts to treat her dry eyes caused by her lack of tear production) but for today we are going home. It will be nice to just relax in our own space as a family. We've been here for 13 days- Genevieve and Ailsa have been going home most nights while I stay here with Zoe. I did get to spend one night at a nearby hotel- very fancy! Between work (both Genevieve and I work at the hospital Zoe is treated) I have been here for the majority of 16 days. Begins to feel like you live here. It will defianetly be nice to be home. I have missed having my girls together. Thanks to everyone to helped out while we were here with giving us breaks, lending an extra set of hands, buying us tea etc.

Zoe is always on isolation when she is in and not able to use her walker, which is very hard on her. We try to bring in her walker round about the time she is getting released so she can triumphantly walk out of here on her own terms. I am looking forward to seeing that today.

A couple of Zoe recommended charities

Hey all,

I know there are a gazillion worthy charities out there, but I thought I'd let you know of a couple of "Zoe approved" charities to add to the list-

Easter Seals- Zoe gets money ever year from Easter Seals for both diaper costs ($400 a year) and equipment costs ($3000 a year). They paid for her bath seat and will (once we apply for it) assist with costs for a ramp/stair lift (this summer) and van modifications (next year maybe?) They also provide for Zoe to go to camp once she is six and until she is eighteen. This summer we are all going to family camp, which we are looking forward to. I used to work at an Easter Seals camp in Alberta (Camp Horizon) so it will be both weird and fun to go to one with Zoe. Genevieve has already been to the mom's retreat last summer, which was a great break for her. I was a little bit jealous. Only a little bit though :)

Easter Seals is having their Ontario telethon today, so if you feel so inclined please donate at http://www.easterseals.org/

According to Easter Seals a family who has a child with a physical disability faces $40 000 in medical expenses and loss of income a year. That certainly holds true for us- in Zoe's short four years we have had over $65 000 in uncovered medical costs, not including loss of income. So every little bit we can get from Easter Seals helps- the same is true for countless other families with kids who have disabilities.

March of Dimes- provides $15 000 in a once off contribution for van modifications/ramp for house access, which will be very handy when we get around to looking at those things. These are crazily expensive modifications, so it is great the March of Dimes recognizes this and helps out.

There are several more charities aimed at assisting the families of special needs kids to cope with expenses, but a lot of them are income based and do not take into account the amount spent on medical expenses (which for us is considerable). So if you are looking at donating this year and want to keep Zoe in mind these two are good ones to consider. And at some point, Zoe may just be having her own completely non tax deductible "ramp" fundraiser coming up at some point too, so keep that in mind : )

Update on RDSPs in Canada

Government finally makes RDSPs available- BMO only bank to offer it
After a year of reading about and being promised that RDSPs (Registered Disability Savings Plan) would be available in 2008, the government finally made RDSPs available. We had the choice (is it a choice if there is only one option? I think not) of going with BMO. The RDSPs became available on December 22, 2008 and you have to contribute before December 31, 2008 in order to get the grant for 2008. What this means is that we had to go to BMO, set up a profile, speak to staff who had no idea what they were doing and actually were incorrect in that they did not take Gavin's info which means he has to go back today. Then we had to call a 1-800 number (the same number that all Canadians were using and no, they did not have extra staff on hand to handle the extra calls) and wait 80 minutes to talk to an investment agent. I have to say, that when we did finally get through, the person was knowledgeable about RDSPs. So that was helpful. He emailed us the forms, we filled them out and faxed them today. According to the guy we spoke with, as long as BMO gets the paperwork by December 31, we will get the grant money. It does not matter if the actual RDSP is not set up until after the New Year.

They don't seem to have some kinks worked out quite yet. When I asked how we will know that they got the fax, his response was, "We haven't figure out how we will be contacting clients." He said we could call again and wait in line for another 60-90 minutes to speak with someone but they may not know because some of the accounts will not be in the system until after the New Year. When I asked how we can make deposits in the future, he recommended calling and giving the account number and password. On the forms we set the password but how can we know the account number if they don't contact us? His response, "We haven't figured that part out yet."

And so, in blind faith we have faxed the forms. Hopefully all goes well and Zoe will have an RDSP opened in her name.

Good News from Ontario
The good news is that Ontario has declared that a person receiving money from an RDSP will still be eligible for full disability support. We are setting up our assets in what is called a "Hensen Trust" which also does not affect disability payments. By leaving Zoe our money in these ways, she will still be able to get support from the government as an adult and use our money for the extra things like new clothes, travelling, hockey tickets, whatever she wants. If we did not set up this special trust and just left the money to Zoe, she would be disqualified from getting any public supports. It gets complicated when you are trying to think about all of these future things for your child who will be disabled and most likely unable to support themselves. I think Gavin and I are both relieved that the Hensen Trust will be finalized soon and that the RDSP has started.

Where to go for more info about RDSPs
If you are interested in setting up an RDSP for your child, go to http://www.rdsp.com/
Also, I have the forms from BMO, so if you don't want to wait in line on the phone, I can email them to you. Just let me know.