04/12/2017
Tristan's journey started on May 21st 2010, a blessing he was, and early too, born at 31 1/2 weeks and just 4lbs pounds 2oz. That precious miracle didn't quite know how much his momma and 6 year old sister Mallory at the time back then loved him so much already. Tristan was a emergency C-Section, his heart rate increased to 285 while mom was In the hospital trying to get her sugars to lower. The hospital, poor at judging what they should or could of done for Tristan at that time, made a lot of mistakes and because of there poor and lack of good judgment Tristan suffered with a brain bleed. Following his birth and rushing to keep him breathing and not grey, he spent some time in the NICU. They released him from care knowing he had a brain bleed and because of it being a slow brain bleed, Tristan suffered from 3 strokes, and a grand mal seizure on July 23rd 2010, and he has just been born on May 21st 2010. That day was the worst day I could ever imagine, Tristan stopped breathing in the middle of the night on the 23rd of July, and not knowing what was wrong with him because the hospital hid his brain bleed from me, I woke up and saw that he wasn't breathing, and had to administer CPR, while his brave 6 year old sister Mallory called 911..so thankful to her. Tristan was rushed to a nearby hospital and we were told that he had a virus, myself knowing that wasn't the reason he stopped breathing, " a mothers instinct" I charged to his cardiologist wanting to find answers for him, Thankfully he had his heart monitor on, and it recorded all of what went on, after going to see the Cardiologist, he sent us to Children's Hospital in Detroit, where they then found the brain bleed through the soft spot of his head on ultrasound. They quickly ordered a MRI and back dated the brain bleed to the day of birth. As angry and heart broken as I was, I was egar to fight for my son, no matter the tears, the hurt, and pain I saw him in. After finding out everything, Tristan has had to endure hospital stays, many seizure's that don't seem to deminish, there will be times where I think oh good no seizures, and then boom he will get them like crazy. Tristan has several other medical problems, including Svt, partial Epilepsy complex seizure disorder, EOE, a right hemi, gate disturbance, speech, fine motor and gross motor issues, learning disabilities, scoliosis, one leg is longer then the other and he has to wear shoe lifts and smo braces, a helmet to protect his head from any further damage while he is playing and running about. He has eating issues and has to take pediatric nutritional drinks 4 times a day to maintain his weight because he doesn't eat good due to the Eoe, and Tristan will be tested for high functioning autism in the next couple months here, and shows all signs of high functioning Autism per all of his doctor's. Tristan has vision problems, behavior and post traumatic stress disorder from all the ordeals he has been through in his little short life. He has mottling from his Svt of the heart which like blue patches all over chest and his arms due to circulation problems from his svt. Tristan has had Ot and Pt and speech all of his life to help him with day to day life tasks. We are in and out of doctors offices with different specialist all the time, he see's 11 different ones including his P*P and Neurologist. I take it one day at a time, and just breathe, because that's all I can do. Nobody asks for a medically disabled child, or to have to miss work a lot because of all his seizures, "thank God for intermittent FMLA". There are days when I sit and cry and ask why , and I have to remember that God only gave him to me because he knew I was very strong, independent, loving, kind, honest, helping, caring, and so much more individual. The day Tristan was born my life changed for the better, and that goes for my daughter too. Some days I wonder how I'll make it through, and then I ask how could something so amazing and precious have all of this happen to him, and I just have to trust that God knows whats best, and to let him handle it, and just take it one day at a time. My kids are my world, I love them more then life itself, and I wouldn't change it for anything. Please continue to pray for our family, because we are so greatful to all who do. We are hoping for a house this year and Tristan's seizure dog, we have waited so very long for, but it is hard and difficult when you have a sick child all the time. Im patiently wsiting as my identity was stolen in 2015 so that makes things a rough go for getting a mortgage for a house. That is my wish for them, a house, to watch them grow up in, because home is where the heart is. God bless you all, thank you for all your support for Tristan and his team, "Team Tristan Turtle Power"! I'm truly greatful for both of my children, and I love them to the moon and back and then some, forever and ever in a day!
❤
The Kaminski's.
*Please support by going to www.epilepsyfoundation.org and click on Detroit Zoo summer stroll on June 24th 2017, then click on search for a team, then put in his team name which is *Team Tristan Turtle Power* and you will be able to make your donation there on his behalf for The Epilepsy Foundation of Michigan. All donations are taxable and it will be so gratifying to help out those in need of medical support with Epilepsy, the childrens epilepsy camp, research, awareness and so much more. Thank you for taking the time to read this, it takes a lot of work as a parent putting all this together to create awareness and support for Tristan and those who suffer from Epilepsy. God bless you all. Please share his story, Tristan and The Team Tristan Turtle Power Family Thank you, you are so very appreciated!!
