Thomas was one of the first children I interacted with at SCH. I remember on my first full day here going upstairs to rescue and sitting on his bed. His legs and arms were drawn up and he was laying flat on his back. He reminded me so much of my own little brother that I was immediately drawn to him. Thomas has the gentlest and sweetest soul. He’s slow to open up but once one tries hard enough he usually has a smile or giggle waiting.
Such a great smile! (and chin)
At the beginning of July we had a team come from Switzerland. There were medical professionals and therapists who came to evaluate and train the staff and volunteers. While they were here they taught us some great positions to put Thomas in that aren’t lying on his back. Thomas has pretty severe cerebral palsy that affects all his limbs so positioning him so he is comfortable and therapeutic can be a challenge. The team also evaluated his nutrition while they were here. Thomas is fed using a g-tube and is underweight for his age and height. We feed the children ground up curry and rice in their g-tubes here. It freaked me out at first but now I hardly bat an eye when I see it. With the help of a nutritionist the team was able to make recommendations to add some things into his diet so he will get to a healthy weight. Hopefully we will start seeing improvements in that area and getting Thomas to a healthy weight!
The best part of the Swiss team coming for Thomas though was the music therapy sessions. Thomas and his friend Valor really came alive with the music therapy. He smiled and giggled through the sessions and his face really lit up! Thomas does not express himself much but I could tell how much he enjoyed the music. I’m hoping to incorporate it into my home now that I know how much he enjoys it. I am so grateful for all the help the Swiss team was able to give us for Thomas and many of the other kids. There were a lot of suggestions we are working at implementing into practice.
Swiss team and the Rescue home kids jamming out together
Yesterday was Thomas 10th birthday! A group of us took him out to Starbucks. He does not get to leave the house much so the ride there and the whole experience was a bit much for him but I think he somewhat enjoyed it. He cannot eat much by mouth so I gave him a taste of my whipped cream from my drink and he smiled a bit. Thomas mostly chilled and giggled a bit at the antics of some of the other boys we took along!
First time at Starbucks!
My hope for Thomas in the upcoming year is to work on getting him in more therapeutic positions and really working on making sure he is getting the care he needs to thrive. I would love to develop a form of communication with him- potentially using eye gaze to communicate yes/no. He is a sweet soul who has a lot of potential. Also Thomas has no sponsors! Would you come alongside me and SCH to make sure that he is getting everything that he needs? Contact me for more information about sponsoring Thomas!
Have you ever meet a miracle child? A child who should not be alive and has defied many odds? Caden is one of those miracle children. Cade has Epidermolysis Bullosa (EB) – The Worst Disease You’ve Never Heard Of. EB causes blisters on his skin whenever there is friction. He is lacking a certain protein that keeps the layers of his skin anchored together so when there is friction the two layers separate and cause blistering. He gets blisters from everyday interactions- picking him up the wrong way or even changing his diaper wrong can cause painful blisters on his skin. Sometimes we know what caused Caden’s blisters, other times we can only guess. We believe he has Dystrophic EB based on the symptoms he presents but lack the ability to get this tested in India. 70% of babies with EB born naturally do not make it to their first birthday and Caden celebrates his first birthday on Tuesday so he truly is a miracle child!
Happy First birthday Caden!
This little boy has stolen my heart
Everyday Caden endures an hour or more of painful bandage changes. Some days when I watch his bandage changes it takes everything in my power to stay. But I stay because although I can walk away from it I know that Caden will never be able to. This is his life and through it all he smiles. Despite the pain he is in daily Caden is one of the happiest babies I have ever had the pleasure of knowing. So many people come in and see him wrapped in bandages and assume his life is sad. But if they took the time to get to know him they would see that he is a happy baby who amazes me every day. Caden is a fighter- he fights through infections, pain, and stigma. He has a great support system at SCH that loves and helps him fight every day. So when we celebrate his first birthday we will not only be celebrating Caden but also the people who have made it possible for Caden to be a miracle child.
A part of Caden’s daily routine to keep his skin safe
Smiling through the pain
Every day Caden is reaching new milestones! As of right now he is able sit up on his own for 9 minutes. He is babbling and starting to make new noises. His favorite noise right now is growling- he loves to growl at random times. He is reaching for objects and putting everything in his mouth. He is almost able to roll from his back to his tummy. He loves his ayah and reaches for her whenever she walks by. He has discovered his feet and that his feet can reach into his mouth. Caden loves ice cream! A couple of weeks ago we took him out on an early birthday celebration to get frozen yogurt and he enjoyed every moment of his celebration!
Some of Caden’s support team
Caden and his beloved ayah taking a nap
The symbol of EB is a butterfly because people with EB have skin as fragile as butterfly wings.
Along with all these new milestones come new challenges with Caden. As he reaches new milestones he needs more specialized items to make his life as pain-free as possible. Unfortunately these items cost a lot of money and many of them are not available in India. In honor of Caden’s first birthday would you consider buying an item off his wishlist? Candace, a volunteer who fell in love with Caden and is now back in the States, is helping to organize getting supplies to Caden. We would love to see him outfitted in everything he needs to thrive in the upcoming year! Also Caden needs monthly sponsors to help him continue to receive all the care he needs. If you would like more information about being his sponser please email me at firstname.lastname@example.org. And more than anything else Caden needs prayer warriors who will rally around him and pray for him. He needs prayers for his health and for the right adoptive family to step up. Could you rally with us for Caden?
Caden’s Wishlist: http://www.amazon.com/gp/registry/wishlist/17DB1JQVEB23V/ref=cm_wl_rlist_go_v