Our Triton Rex Fund

$25,097 of $10k goal

Raised by 166 people in 38 months
Jessica Bonewell Muchmore   EDMOND, OK

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!!




Sept.2013
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


10-30-13
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!
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Update 52
15 months ago
I just posted a really long update on Trex with pics included, but it doesn't seem to be showing up. So this is just a trial to see if it works this time!
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Update 51
19 months ago
Well, I never knew Triton could count backwards, but by golly, he certainly is, every day, counting down for Christmas. And just in case I have forgotten, he reminds me of the car he wants and expects to be sitting under the tree! His first official act every morning is to make sure the Christmas Tree lights are on and every evening to make sure the outside Christmas lights are plugged in. Patience for Christmas is a quality we are going to have to work on, or not.
We went to the Edmond Christmas Parade of Lights the other night, although it was chilly and damp, TRex and his brothers had an amazing time. Santa, Cheerleaders and Darth Vader were among the candy-flinging participants. It was a great time!
From the Muchmore family to you, Have a Blessed Christmas Season!
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Update 50
21 months ago
Good Afternoon :) As the holidays are just around the corner, Triton is very excited! In fact he has been counting down to Christmas since the end of September, literally. Every night when he goes to bed he signs to us "sun down, day all done, wake up 56 days until snow and Christmas tree, car present for me" LOL Trex has really been adamant with his countdown. Love this kid!! Anyway, he is currently enjoying all the Halloween treats and activities, and of course wanting to paint pumpkins on a daily basis. Here are a few fun pics of Trex and his brothers.... As always God Bless You All.
Triton, his brothers and cousin Channing
Painting Pumpkins
Petting Zoo
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Update 49
22 months ago
Good Morning Everyone! :) Just wanting to send out an update on Triton. We have made a family decision not to proceed with any of the scheduled eye surgeries, for now. After weighing all the pros and cons we feel this is currently the best decision for T. So for now we will be patching his right eye in hopes the left will strengthen, change his diet, and implement other holistic treatments. So please continue to pray for our little man and for his vision to continue improving on its own. This kiddo has been through enough surgeries already. The fewer surgeries the better! Thank You ALL for the continued support and love you've shown Triton and his family. God Bless You!! ~JessicaKate
Daddy & T at the park
Great day for a drive at the park
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$25,097 of $10k goal

Raised by 166 people in 38 months
Created June 8, 2013
Jessica Bonewell Muchmore  
  Medical   EDMOND, OK
RF
$100
Rhonda Fulton
15 days ago (Monthly Donation)
RF
$100
Rhonda Fulton
1 month ago (Monthly Donation)
RF
$100
Rhonda Fulton
2 months ago (Monthly Donation)
RF
$100
Rhonda Fulton
3 months ago (Monthly Donation)
RF
$100
Rhonda Fulton
4 months ago (Monthly Donation)
RF
$100
Rhonda Fulton
5 months ago (Monthly Donation)
RF
$100
Rhonda Fulton
6 months ago (Monthly Donation)
RF
$100
Rhonda Fulton
7 months ago (Monthly Donation)
RF
$100
Rhonda Fulton
8 months ago (Monthly Donation)
RF
$100
Rhonda Fulton
9 months ago (Monthly Donation)
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