Triton Rex 6-29-2009 Birth
May God Bring Many Blessings Your Way.
Hello :-) My name is Jessica Kate and I am a mother of 4. Fortunately, 3 of my children are healthy normal little fireballs. However, Triton was born with a DNA mutation called Pfeiffer Syndrome type 3. Some of his mild symptoms include hearing loss, vision loss, sleep apnea, severe speech impediments, and fused (unable to bend) knees/elbows. These symptoms make everyday life a struggle for the little guy. Amazingly he has found a way to manage his mobility and communicates with some modified sign language.
I am setting up this donation page today for funds to help correct Triton's most severe deformity, his skull. For those of you who dont know us, let me share a brief history:
In May of 2008, I gave birth to a beautiful and healthy boy. Life seemed perfect. At 5 months postpartum we discovered I was unexpectedly pregnant again. I had just returned back to work and was still breastfeeding my newborn. Another baby... really?!?!?! Coming 4 weeks early, the delivery was a surprise cesarean. Up to this point nobody, and I mean nobody, not even the ultrasound techs or Drs knew that there were any medical issues or concerns. But by the intense sound of silence in the O.R, I knew the moment he was born that my life was changed forever. What a surprise that day was!
After 2 weeks of tests and observations, we were released from the hospital with our little angel. Triton had severe craniosynostosis which results in central apnea and in most cases hydrocephalus and even a herniated chiari. His head was shaped like a jelly bean and the pressure caused him to stop breathing multiple times a day. And keeping food in his tiny 6 lb body was impossible. Not just because his airways were restricted, but because every drop of milk that I could get through his feeding tube would come up in projectile vomit almost immediately, causing him to aspirate and stop breathing again......he was dying, and the local doctors knew there wasnt much they could do for him.
Two months went by, my husband and I of course hadnt had any sleep, but our son was still alive. We were somehow, by the grace of God, keeping Triton alive. My husband did some online research and found a doctor in Dallas, Dr.Fearon, that appeared to work miracles on people with similar symptoms as Triton. We reluctlantly took the 4 hr trip to Dallas, the feeding tube and wires from his monitors made travel very difficult and quite scary. We had to make 2 emergency stops on the side of the interstate, to start Triton breathing again. But once we arrived in Dallas we were given hope for our sons survival! Although Triton was only about 5 lbs (he had lost almost 2 lbs since birth) the Drs knew he would die soon if we didnt operate, but also knew the surgery itself may end his life, which was nearly a reality after two flatlines during the surgery.
Triton has had 9 surgeries altogether, 4 of which were Cranial Vault Remolding surgeries also known as CVR. During a CVR the skull is cut out in sections, removed and then shaped to allow the brain room for growth. As parents we whole-heartedly believe its important to take care of our children to the best of our abilities. Well, as you can imagine our financial ability has slowly dimenished. Triton has another CVR coming up soon. We are blessed with insurance but of course there are still many needs and expenses Triton has that are not covered by insurance.
I could spend all night typing out a list of his needs. Trust me there are many, oh so many. But today I just ask for help in easing the financial pressure we feel with his 5th CVR approaching. Every dollar is greatly appreciated and I pray that every dollar donated is returned ten fold. God Bless You and your family!!
Tritons 5th CVR has come and gone with great success! The painful headaches, vomits and long stretches of sleep are now a thing of the past. At least until we get closer to the need of another CVR. Trex is in better spirits and laughs on a daily basis :) Now we can focus on his education and all the other doctor referral's. Our next mission is to get Trex a modified bicycle (currently looking into AMBUCs donation), alter the bathroom for his functioning, and some custom made shoes. Blessedly we met the original goal for the CVR. Thanks to all you wonderful people :) and have even gone over by 13%!! God has Blessed our family with Triton and now Trex is being blessed by the kindness of compassionate people. Thank You All for everything big and small. God Bless Your Families by fulfilling your dreams. With Love, JessicaKate
Triton has just gone through a growth spurt. I swear his legs grew 2 inches! :) Its a blessing to see the growth knowing he only has partial growth plates in his knees. Im noticing that his falls have increased, seems to fall at least 3-4 times a day now. Not sure if its because of balance or just the fact he has been so very active since the last successful surgery? Anyway, life has been filled with laughter and enormous smiles from Trex the last few weeks. As usual we are soaking up the good times between surgeries. Hopefully we will get at least 2 years before Tritons smiles turn to frowns. Here is a recent picture from the pumpkin patch/farm. Mommy Loves You Triton!