Our Little Jacob

This is a blog detailing the daily struggles of having a child with Spastic Quadriplegic Cerebral Palsy. My son is 1 of 2 surviving triplets. My son and his identical twin brother Logan who passed away at 6.5 months old had Twin to Twin Transfusion before they were born. They were delivered at 28 weeks to try and save all 3 of their lives. I have a hard time connecting with other parents raising children with severe disabilities so, I thought I would branch away from my other blog to blog just about my son and his special needs in hope of reaching out and supporting other moms dealing with similar issues.

Saturday, April 11, 2015

About to check out Eye Gaze and found an Awesome Tooth Brush.

So while at therapy last week a representative came by during speech therapy to test Jacob to see if he could be a candidate for Eye Gaze. We are currently on the waiting list, which I guess is a few weeks long for him to have a 1 month long trial with the technology to see if he can learn to operate it. We have been working with him at therapy to make choices by looking in the direction of what he wants. I think he understand but he is still pretty hit or miss on if he wants to participate. He is still very engaged with Mickey Mouse Club house and that continues to be 1 of his only motivations.

I Seen someone post a toothbrush they found on Amazon it had bristles 360 around the brush. They have an infant 1 for up to 24 months and the next stage up. I accidently ordered the baby one but it works and he loves it. He laughs the entire time I brush his teeth instead of clamping down on the tooth brush or turning his head away from me while I attempt to brush his teeth.

We have had a swing away electric wheel chair lift that was donated to us in our garage for well over a year.  We didn't have a hitch or the extra money to have any of it installed. Well, my dad and I traded vehicles over Easter weekend and we now have an suv with a hitch. I really don't need the fancy, heavy lift we have, so I looked up manual lifts. I was suprise to a owe how cheap they are and now I'm thinking why didn't I just spend the $250 and have the hitch install and buy 1 of these geez! I'm going to buy 1 very soon.

I also just wanted to mention (not sure if I have before or not) that I make feeding tube backpacks. I modify toddler backpacks mainly and add straps and holes to make them work for Infinity and Joey pumps. I have a Facebook page (Affordable Feeding Tube Backpacks for Special Needs Children) where I take orders to modify the bags. I charge the actual price of the bag chosen then charge shipping to the person and $7 for Joey and $8 for Infinity to modify. That covers my paypal fees,shipping supplies, and supplies need to modify the bag. I don't do it for profit. I do make $2-3 for my time. I've made about 100 or so so far. I'm going to post a blog on how to modify them yourself. It is so easy. For anyone who asks I try to send them instructions to make them as well. Lately I have been exploring other bags. I currently mainly use Skip Hop Toddler backpacks they work perfect for the infinty pump and everyone who had used it with the Joey says the work well. For little ones who are mobile under  2 or 3 years old Skip Hop makes a small harness style backpack that already has a chest clip that works very well. This week I was challenged to modify a bag for a 8 year old little boy who uses 2 pumps and a ferral bag at the same time. The bag I used was Obersee Kid's preschool backpack. This bag would also work well for Joey pumps since it is slightly longer. It also has a chest clip already!

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