Fundraising under way!

So for all squishys followers if you haven't already heard yet on fb, we are doing a Scentsy fundraiser to try to reach a gaol of $500 at least to pay for a plane ticket to Omaha Nebraska the end of June. Why you ask Omaha!? Well that is where the first ever Ohtahara syndrome gathering will take place!

It will not only allow us to meet other families and kids suffering from this horrible syndrome but they also will have a day of gues speakers from many different medical areas. It will give us a chance to meet the dr from Boston children's hospital where we belong to a genetic study being done especially involving Ohtahara syndrome itself... They will hopefully have so e answers regarding what studies have already been done and any results there may be. They will also have a dr that deals with a rare disease database that will be talking with us... An possibly a neurologist ? So it will be a great opportunity for us to get some one on one with some great medical knowledge. This is a once in a lifetime opportunity . My goal is to at least gain the funds to pay for the plane ticket to get there...
In advance I really appreciate everyone's tolerance with our fundraising either with the girls softball or with aiden .. It sucks to have to ask for help!!!

So with that I am placing the first set of orders today if anyone wants to place an order! We get 20% of all sales to help us to get to our goal the link is www.tanamday.scentsy.us and there is a link for squishys fundraiser

Thanks in advance!!


So other than that we had a bout where aiden was having a seizure every day for a solid 4 days... The worst part was there was no evident cause.. He wasn't sick no fever ect.... We ended up contacting the nuro and upping his med back up... It just seems that the one med we were eventually trying to wean, really seems to be working for him and he needed to stay on ... So for now we are again seizure free! I am concerned with his eye sight though .. His eyes seem to twitch around a lot more which then makes it harder for him to concentrate on a specific object. We seem to notice it a lot more at night or when he's tired...

And we have officially got all of his equipment that was ordered!!! It's a miracle! His stander finally came in Friday.. I hate it , it looks like something from Hannibal lecter ... But if it allows my sweet boy to stand and get the benefits from that ... That's what we do...