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.

Wednesday, August 26, 2015

How to modify a backpack for a feeding tube pump

I've been modifying backpack for probably a year and a 1/2 now. Affordable Feeding Tube Backpacks of Facebook. This is the video I made for those who asked on how to make their own. The 2nd link I'd to another really simple way that doesn't require a sewing machine.

Tuesday, May 12, 2015

our Spastic Quad CP son in Macclaren Major stroller

I've posted about this stroller Before and all the strollers we have had. This had been the 1 we use the most and for the longest. Jacob will be 6 in 2 months. He is a tall about 42 inches and 53 lbs. We still use the size 2 special tomato chair in it. We tilt the chair leaving a gap at the  back/ bottom of the chair. We secure it with the strap that comes with the chair around the  back of the stroller. It works well overall. We do have some head control issyes and he likes to lean left  but this option has been best for going out in public without taking the 70+ pound wheelchair.

I'm posting today about the accessories that you can buy with the stroller. Today I installed the $44 sunshade I bought from Amazon.com. It is okay. It doesn't flip up out of the way. It is fixed in 1 spot. It is easy to remove though. You can fold the stroller with it attached, it just looks weird, but it wirks. I honestly haven't read the directions on it there is a certain way to fold it with the stroller or not. I was happy it fit over the tomato seat. his head is right a the top and he is just about to small for this seat but for now it is great.

I like to make sure things will work before ai spend big money on them. I'm working on buying accessories so he can sit in the stroller without the tomato seat. His head just above the back rest of the stroller when sitting in it without the seat.

Over the weekend I made my own chest pads aND made really ghetto lateral supports just to see how he sat before I ordered the factory ones. I think I will keep my chest pad, but I did find the laterals on ebay for $65, so I bought them. I will update this again once I have the rest of the accessories. For now this is what I have.


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!