Special programs and equipment

It truly takes a village when you have a child, but having a special needs child... It takes a whole damn city.

It took me awhile to feel comfortable reaching out for help after we got the diagnosis. I don't like asking and always feel awkward accepting it. Before we had the diagnosis but were admitted to the hospital in early March 2021, my girlfriend created a GoFundMe to help us. We needed the help and so many people have donated to our family.

We also found programs out there that we probably would have never heard about. I thought I would do a little blog to spotlight some of the programs and organizations who we have found and that have been an absolute support line for us. I'll keep this page updated as we find more programs and items that help us out!

• The first one that comes to my mind is NTSAD- National Tay-Sachs and Allied Diseases. I've touched on this organization a few times but this was the first website I found after our diagnosis. I found their family support group on Facebook and immediately requested to join. I posted that we were newly diagnosed and I have no idea what to do. Within minutes, I kind you not, I had notifications coming in that people were commenting and sending me direct messages. It was so amazing. Everyone was so kind and welcoming. Then of course they had their virtual family conference that we attended and I'm so thankful we did. I met so many amazing people and everyone is so welcoming. They are so brave and honest with their journey and everyone was willing to share to help educate us and made sure to let us know that we weren't alone. Since then new families have joined the Facebook group and I think the common theme is "We are the family that you didn’t want to join but we are so happy to have" and I don't think that could be any more true. These families have become extended family members to us and so thankful we found them.

Click here for their website: https://www.ntsad.org/

• Another group that we found is the BBrave Foundation. This foundation was created by another NTSAD and Tay-Sachs family in memory of their son Joey. They share their story on their website, but Sara (Joey's Mom) reached out to me over Facebook to offer to help. She even called me and went over some programs and things she recommended I look into for Grey. We spoke on the phone for awhile and she has been such a wonderful support for our family. They have different funding available to families like ours. We applied and they were able to help pay for our monthly expenses and our groceries for an entire month. They even have a self care fund set up that Adam and I need to apply for a gym membership for the both of us! (Or maybe a massage...)

Click here for their website: https://bbravefoundation.org/

• Tiny Superheros! Tiny Superheros (TSH) is such a beautiful operation. It started small in the creators basement. Now over 80,000 children all over the world have their very own cape. The cape helps kids realize how special, strong, brave, and wonderful they are no matter what they are facing. The TSH start by crowd fundraising to get your very own cape. Once you have earned enough for the cape they send it out to you and you can complete missions to earn patches. You can also buy patches and TSH gear. They also have a Facebook support group for TSH families. Another place where I've learned so much from other families sharing their stories. You can even donate money to sponsor a random chlid's cape- whoever is on the waitlist for their own cape.

Click here for their website: https://tinysuperheroes.com/

• Lightz of Hope is the organization that gave us Greyson's light globe that we have on for him every night as he falls asleep in bed. It's a light globe that has a remote, different light functions, speeds, colors, patterns, and the device is also a blue-tooth speaker. It was completely free to us. We simply filled out a form with Greyson's diagnosis and information and they shipped us one. Lightz of hope started from an amazing boy named Zachary. Zachary faced Myotubular Myopathy and it was his love of lights he wanted to share with other children. They have more about their story on their website. Their family have been so kind to us and even sent Greyson a t-shirt to rock!

Click here for their website: https://www.lightzofhope.org/

• Penny's Pals: this was a new foundation I found through another family in the TSH Facebook group! Penny's pals support medically fragile children and their families. They help fundraise for your family through private donors, sponsorship, and fundraising activities. Currently they posted Greyson's story on their Facebook page that links our GoFundMe and our PayPal account. Penelope (Penny) was another NICU baby like Grey and had a rough start to her amazing little life. Her parents created Penny's Pals to help other families like theirs. Penny's entire story is on their website and it's pretty amazing. Her legacy lives on and helps other families like ours stay above water.

Click here for their website: https://pennyspals.org/

• Local programs for us that we utilize here in Brown County WI- We are currently enrolled in our state Medicaid to help offset the cost of Greyson's medical bills. We were enrolled without needing the Katie Beckett program but that is available in our state. We are also enrolled currently in WIC through our Medicaid. I think the biggest program that has helped us from the county is the CLTS (Children's long-term support waiver) which is a home and community based program that funds community supports and services for children who have substantial limitations in their daily activities and need support to remain in their home or community. Eligible children include those with developmental disabilities, severe emotional disturbances, and physical disabilities. Funding can be used to support a range of different services based on an assessment of the needs of the child and his or her family. We have used the waiver to pay for our pool visits to the CP center (it's normally $8 a visit), they helped fund our ppod, they paid for Greyson' s pool floaties, they helped us with other adaptive equipment. They have taken a lot of expenses off our plate to make life easier for us and Greyson. I'm not sure if every state has something like this, but definitely look into it if this fits your family.

Click here for Brown County WI: https://www.dhs.wisconsin.gov/clts/index.htm

If you have a child that has similar concerns as Greyson - these are the equipment we have that we would HIGHLY recommend you ask insurance, state insurance, or any other program to help you get for you little one.

• PPOD CHAIR. number 1, 2, 3, and 4. Top thing we have in our house hands down. The ppod chair was ultimately covered by the CLTS waiver for us and it's been used every day since we received it. It's a supportive chair that Greyson can sit in by himself. It reclines (you can change the position) and he absolutely loves it. Before we had this chair we were either holding him or he was laying on the ground. We didn't have another option. Now he has his own chair that supports him and we can see him. He's up high enough to be our level when we are sitting in the chair or couch. We read books in the ppod, he gets his feeds in his chair, and a lot of naps are had in the ppod. The one thing I would suggest with the ppod is ask for it early. It took us a LONG time to get the chair. They are expensive so there are programs to help cover the cost if your insurance won't or if you don't have a waiver type program. If you are looking for a program to help- some families in our support group have suggested The Jackson Project. We have not used them but I know others who have. They can be found at thejacksonproject.org

• Another thing we use daily is Greyson's food pump with this gtube. It hooks up to his food bag and delivers his food in a controlled amount of time and volume. This was provided to us by his DME company but we use it with every feed. You are able to do it by hand but that would be us pouring his food into a larger syringe and holding it up by hand. The higher you hold that syringe the faster the food goes. The lower you hold it the slower it goes. That always works in a pinch but the food pump is a really great way to allow Greyson to eat with more control.

• We also have the suction machine. The suction machine has attachments to either suction his nose or his mouth. We use both! We have a travel suction machine and a "permanent" one. We really only use the travel one. The permanent one doesn't seem to work as well and it's SO LOUD. The travel one is loud but works well. Below is the machine, a nasal suction, and a red rubber suction catheter. The red rubber is what we use for his mouth. A lot of the secretions gather in his throat and near his vocal cords. This red rubber goes down his throat to get it all out. It's intimidating to use at first but it's MUCH better than listening to him struggle.

• We also use a nebulizer, cough assist, and shake vest to help break up his secretions and mucous. We use a pulse ox at bedtime to monitor his heart rate and right now he is hooked up to oxygen at night too. We have oxygen tanks and also an oxygen condenser. We use the condenser in his room because it pulls room air and converts it to pure oxygen for him.

• We have a stroller/wheelchair that we use. It has more trunk support than a typical stroller and is more adaptive for Greyson's needs.

• We have a custom bed and changing table (made by Greyson's Papa - my Dad) The bed is up higher so we don't need to bed down so far to lay him down or pick him up. The changing table is also up higher and is also on wheels. Greyson's room is down the hall from our bathroom so we are able to wheel it in there to help get him ready for bath or after his bath up on there.

• Almost forgot- speaking of bath- a bath chair. Greyson has no muscle tone. He can't sit up so we have a bath chair that he lays in so we can give him a bath safely.

• We also just ordered the Wonderfold Wagon! (Second picture, top row below) that will act as a secondary wheelchair for Greyson--their website: https://www.wonderfoldwagon.com/

Below is Greyson's bath chair, Wonderfold Wagon, Wheelchair, his Lightz of Hope light, the oxygen condenser, his starlight projector