07/02/2023
๐๐ฎ๐ฎ๐ญ๐ฒ๐ท๐ฐ ๐ฃ๐พ๐ซ๐ฎ ๐๐๐ช๐ป๐ฎ๐ท๐ฎ๐ผ๐ผ ๐๐ฎ๐ฎ๐ด
As itโs feeding tube awareness week we thought weโd share our journey which lead us to make feeding tube bears.
My son has condition where he is unable to swallow safely. Fluid and certain food go into his lungs instead of his stomach! Heโs had this condition since he was 3 months old! But unfortunately it was only picked up on his second birthday when he was first ventilated. After the the second PICU admission in October 2021, he came home on a feeding tube.
No one prepares you for life with a feeding tube, you just have to adjust over night. As a parent it was heart breaking.
I searched everywhere for a bear to show my son and to normalise feeding tube for him and for him to show his friends. I had no luck so we made him one. And from there came to life and we decide to make and donate bears to child, adults, families and hospital to help other people. I never wanted to make money so we just asked for postage to be covered.
Since starting Tubie Buddies in March 2022 we have made nearly 400 bear for other people and had some amazing donations along the way. Iโve spoken to other amazing tubie families and adults and it helped my son and myself to not feel so alone in a world where there is not enough awareness of feeding tubes but actually an incredible amount of children and adult have them.
My son has since gone from an NG tube to a Freka tube which again has been a massive learning curve. We have had surgery to help and have more surgery next week and in June.
The Tubie Buddy family is just myself and my mum so sometimes orders take longer than we expect and sometime we go quiet because what I have learnt from this experience is life can be very unpredictable with short notice hospital visit and pure exhaustion as a parent.
We truly love making the bear and seeing all the photos of the bear with there tubie friend it makes it all worth while and we will continue to make bears for as long as we can.
What I will say is I think all the children, adult who have feeding tubes are amazing and the strongest people.
Tubie buddies ๐งธ๐ป๐งธ
