Good Evening everyone :)
We finally have a date set for Tritons 1st (of 6) eye surgeries. It will be July 10th at OU Medical. Typically all his surgeries are done in Dallas because that is where most of Tritons doctors are. But his neuro-ophthalmologist is here in Oklahoma. Yay for not having to travel!
Trex continues to do better everyday and is such a blessing to this family. Aside from a few recent bumps, bruises and stitches, he continues to grow and learn.
Hope everyone has a wonderful holiday weekend :) God Bless!!
Hello everyone! :-) Triton has continued doing well. He has half a dozen eye surgeries coming up over the next 24mths, so keep that in prayer please. Other then his obvious obstacles he continues to grow and learn at an almost normal rate. We are so very Thankful for each and every one you that support our little guy. Trex is truly a blessing and I couldn't imagine a more perfect family. Please continue to follow Trex on FaceBook at Our Triton Rex. We are temporarily going to set this fund account as inactive. Hope all is well with you and yours truly. With love and great respect, God Bless ~JessicaKate
Good Afternoon Everyone! My apologizes for such a late update. Triton has been doing well and enjoying the outdoors, when its warm anyway. We recently had an appointment with Dr.Siatkowski, neuro ophthalmologist. He reviewed the most recent MRI scan we had done in Dallas a month or so ago and Triton will need 5-6 surgeries to fully correct the muscles in his left eye. The doctor was pleasantly surprised with the structure and health of the muscles and feels we should schedule his first surgery ASAP. Looking forward to Trex having better vision, but of course it will be a rough ride for the little guy. I will continue to update you all. Hope all is well with you and yours truly. As always, God Bless! ~JessicaKate
Triton & bros feeding the ducks Feb'14
Tritons favorite toy at the park, slide!
Triton explaining about the ducks to mom
Today was an amazing day! Meg Alexander from KFOR News Channel 4 made a visit to our house. She, like many of you, has fallen in love with Our Triton Rex. And has joined us in support of his journey. As all of you know we initially set up this Fund to help cover the costs of Tritons 5th CVR. And what an amazing and heartfelt response Triton is receiving. Thank You! Any and all donations made on Tritons behalf go directly DIRECTLY to Triton. We of course as parents cover all the expenses to the best of our abilities. Any extra funds will be placed into a savings account for Triton to be solely his at the age of 18. Again, Thank You All for your continued support and love. May God Bless You All! :-)
Oh yea, and we did hear back from Tritons Doctors. All is well from the MRI. Another MRI follow up in 2 years. Praise The Lord!
Triton Rex has made the news. As a hero for saving "No Name". A lorikeet from the OKC Zoo literally landed on our front porch this morning and Triton saved its life. :) You can read his story at kfor.com
Well, its been 3 days since Tritons MRI. Still no word from the doctors regarding the extra fluid in his head. So we are assuming the best case scenario that all is well.
Our Triton Rex is strapped into his carseat and ready for his early morning ride to Dallas. MRI and round of doctor visits this morning. Will update as the day progress. Good Morning and God Bless.
Well HAPPY NEW YEAR EVERYONE! My apologies for being 2 days late... The entire house has been passing around RSV, Strep, Bronchitis, Pneumonia, and ear infections. We have had a rough week but Triton is getting over the sicknesses faster then the rest of us, he is blessed with fast healing :) Hope everyone has had a wonderful New Years Eve and enjoyed the start of their new year.
We will be heading to Dallas Monday night for a 7am MRI Tuesday morning followed by Dr appointments. Please keep Triton in your thoughts and payers that everything looks good. We greatly appreciate all the support. May the goodness of your hearts be rewarded ten-fold.
With Love and Respect ~Trex Mom~
Triton really enjoyed his Christmas Day. Lots of laughter , toys, good food and most importantly family. I believe Trex smiled enough today to last for a year :) Makes my heart smile to see him light up even brighter on this special day. Thank You everyone for your love and support. May God continue Blessing You All. Merry Christmas and Happy New Year!
Merry Christmas from TRex!
Hope this finds everyone well. Today was Tritons postop Neuro-ophthalmologist appointment to check for swelling or additional optical nerve damage. It was rescheduled due to the potential traveling conditions. So as of now, we will see NeuroOp on the 19th and then back to Dallas on Jan 7th. for another MRI. In the mean time Trex is doing well and continues to brighten all our lives :)
Thank You Tom Muchmore and the employees of Ponca City News for donating your time, talent and article space for Triton. Everyone be sure and pick up the Thanksgiving edition of the Ponca City News to see a list of all of Tritons supporters whom we Thank VERY Much for all that has been done for Tritons cause.
Updating Tritons Page. Take a Look!
Hi Everyone! Triton has fully recovered from his CVR, YAY! He is doing very well and enjoying life pain free at the moment. Isnt that all life is, a bunch of little moments? Since Trex birth my has become filled with precious and unexpected moments :)
Triton LOVES a good fort :)
Good Afternoon! Just a little update on Triton. His random swelling is almost completely gone YAY! And the visit with Dr.Gates yesterday went really well. Doctor said that Trex ankles, knees, hips and back are doing rather well (all things considered). No need for special shoes just yet. We will just continue to monitor his mobility and watch for potential issues. God is ALWAYS Good, even when we cant see it. Thanks Again for keeping up with Our Triton Rex. With Love, ~JessicaKate
Triton has some unusual swelling over his right eye across the forehead. Dr says to keep extremely close eye on possible inter-cranial infection or hydrocephalous. Trex needs all you prayer warriors!! Lets pray this swelling goes away with no adverse symptoms. Thanks everyone.
Yesterday Trex had scans of his hips, back and neck. With his knees locked and the ankles taking all the weight support, the doctors are keeping a close eye on everything else. Not sure how Trex will continue walking as he gets taller and heavier, but I'm sure he will prevail!
Today was Tritons first day back to school in a month. He had a wonderful day :) Trex only goes for 3hrs a day, mainly for his therapy. But I'm so glad he enjoys it!
Here is the video..... "Triton's Rain"
Our Triton Rex video "Triton's Rain"
My Husbands account of the first 4 months of Tritons life. Thank You Andrew Barnett Muchmore for sharing. I love you Immensely. Your Wife ~JessicaKate
So many amazing friends, friend of friends and total strangers have shown such genuine concern and compassion for Triton and his journey. Many have asked questions, and I know many more are hesitant about asking questions for fear of offending. I have received so many personal messages from friends I haven't seen in many years, it touches me, as does the story (in a nut shell) that follows. The video is just the first few months of Triton's life, and represents the beginning. It starts a story that has been the focus of our life's the past 4 or so years and we want to share the amazing things that he is accomplished in the face of adversity, the joy he has brought to our heart, and the smiles he has shared with everyone he meets.
Four years ago June, for reasons only HE knows and understands, we were assigned the task of caregiver for one of the strongest souls I've ever known dwelling within the frailest of bodies that I have ever seen.
Even though it was considered an emergency c-section, due to the baby being breech, everything seemed normal enough. Momma was on the delivery table, the OBGYN was in place, the pediatrician was standing by to take over care for the new guy, and the delivery room nurses were at their station prepared to bathe him, warm him, and bundle him for his anxious parents . Another life was coming into the world, and a new son for us, and a new baby brother for Megan, Amy, and Happy. The procedure was smooth and normal, a miracle of modern medicine that God has given the doctors the ability to deliver a baby in this way for the safety of mother and child.
I watched Triton exit the safety and comfort of his mother's womb, and as I heard his first cry, tears of begin to well up in my eyes as the emotion of joy surfaced for this daddy.
I know newborns often have smushed heads and scrunched flat faces, but things seemed more distorted than I would imagine a newly delivered baby should have and
I couldn't help but notice the look of concern on the pediatrician's face as he quickly placed Triton under a heat lamp .
I stepped closer and my fears were soon realized. It wasn't the tears of joy in my eyes distorting my vision, it was the child in front of me that was distorted. He seemed almost folded in half like a pocket knife, his head was shaped more like a jelly bean then that of a newborn boy. His hands were folded over at the thumb and an array things that were outside the description of "normal" just did not seem possible.
The OBGYN was closing up momma and he was dutifully focused on the task at hand.
For the first few minutes, not a word was mentioned by the pediatrician or the nurses that something was wrong. My wife looked anxiously to try to get a glimpse of her new bundle of joy, and the desire to hold her new baby could be felt throughout the room
After what seemed like an eternity, but in reality was probably no more than a few minutes, the pediatrician took Triton into an adjoining room and brought me in there as well. He confirmed my fears telling me that there were definitely some abnormalities with my son.
I was speechless, the doctor had no immediate answers, and I could not even offer my wife a comforting and supportive glance to let her know that everything was okay. My heart was already in my throat, and my knees quickly turned to rubber when the pediatrician told me he was ordering a sonogram to see if this child even had a brain within his distorted little skull. An old and trusted friend was working radiology that day, Gary Nicholas, and as he tried to do his job and separate the personal aspect from it I quickly became a basket case
Triton looked more like a picture of a normal baby that had been crumpled up and discarded then he did an actual living breathing child, how could he live more than just a few minutes was the question that repeated itself on an endless loop in my mind.
As I stood at Tritons side, wondering whether or not he would continue breathing, the doctor told momma that there was a problem. The only answer they had for our infinite questions was to fly him to OU Children's in Oklahoma City
I don't think Triton was even an hour old when the flight nurses wheeled him through Momma's room a for her first glimpse at her baby and a chance to touch his hand. Then moments later we watched through the hospital room window as the helicopter took to the sky carrying our newborn son, leaving us wondering if he would even survive the flight.
The despair a mother must feel as her newborn child is air-flighted away to a hospital in another city while she is confined to the one she is in is something I cannot even imagine.
A friend, Kristy Russell, came to be with Jessica in the hospital while I made record time to Oklahoma City on the highway. Jessica was so anxious to be with Triton, she left the hospital in Ponca City the next morning (one tough momma.)
We spent 2 weeks in the NICU hearing more opinions than you can shake a stick at. When the genetic tests finally came back, it was revealed to us that Triton had Pfeiffer Syndrome. Rare, unexplained, unknown prognosis.
They sent us home with a feeding tube through his nose which made him gag and vomit and had to be removed because it caused more harm than good, a breathing alarm, and no other answers. Are you serious? What were we to do?
The breathing alarm strapped across his chest and was designed to determine whether or not Triton's chest was expanding and contracting. Piece of junk medical device. Between the pressure on his brain causing central apnea and a nearly collapsed airway causing obstructive apnea, the alarm literally would go off dozens and dozens of times during his sleep as his body would just not allow him to take a breath. We would do our best to stimulate him to see if his brain could somehow find the command for that frail little body to take one more breath. Never knowing if it was the last alarm or the last breath we would hear from our little guy. Jessica was in a constant battle to get even a few drops of milk down him, just to have him aspirate and vomit, momma hoping every time that it was in his tummy just long enough for him to draw some nutrition from it.
Somehow, through sleepless nights, and what seemed like fruitless feedings, my wife and I persevered, and so did Triton, greeting each day with a thankful for prayer that Triton was still alive, although he was losing weight and getting weaker.
We found ourselves researching and finding our own answers to the questions, and through whatever intervention you want to call it, I stumbled across a surgeon in Dallas.
Whatever it was that made me drawn to this man, I thank the Lord for it. We soon came to believe, and still do, that this man is one of the most gifted craniofacial surgeons practicing today. Where it took weeks for the doctors at OU to assign a name to Triton problems, it took Dr. Fearon a momentary glance to assure us he knew exactly what was wrong.
We soon realized that if we had listened to the doctors at OU, and came back a year later for a surgery, that Triton would have long before died a miserable and painful death. Dr. Fearon painfully yet patiently awaited the 3 month mark for Triton to do the first surgery.
The first order of business at the first surgery was to put in a tracheostomy to relieve the obstructive apnea that kept us struggling to keep him alive from hour to hour. It was frightening to think they were going to jab a hole in his throat for him to breathe through, however, as they initially try to put him under with anesthesia he crashed on them... twice, but the team that Dr Fearon had assembled was prepared and unwilling to let this little angel slip away. When they got him stable,
they then began to carefully and delicately remove the majority of his skull to d
Only 1 more day then its Tee Off for Triton! Come out to the Blackwell Golf Course Saturday between 8a-1p if you would like to meet the Sweet little boy you've been praying for and supporting with donations. We would love to see all of you and meet many others for the first time. Hope to see you there!! :) as always God Bless. ~JessicaKate
Triton is super excited for his first night out since surgery. He loves to watch football! :)
Good Evening :)
Triton had an amazing day today. I wanted to Thank Everyone again for all the prayers that expedited Trex's recovery. We now have a FB community page called Our Triton Rex. Like the page if you want to continue following Trex's journey. I will continue to update here at GoFundMe but not as often. As always may God continue to Bless You all! With Love ~JessicaKate
Triton had a wonderful day today! It was so nice to finally have Casey and Haley Smith over for BBQ. Trex was in good spirits and even let us take a picture. Again, I am so blessed and Thankful for everyone who has taken an interest in my son. He deserves it:)
Well, Triton is back to having a sensitive tummy today. Not keeping anything down. Seems to be flu like symptoms. Hopefully, that is the case. Im not seeing any indications of infection, no additional swelling or extreme fever. Poor kiddo :( he is really having a rough go during this recovery time. UP and Down from day to day. On a brighter note, the incision looks wonderful and his eyes are finally clearing up as well.
Our next trip to Dallas will be in about 4 weeks for his post-op visit. Then we go back two months after that for follow up MRI. Dr.Fearon had stated that during surgery with every piece of skull bone that was removed, Tritons brain immediately swelled. Which means he had more pressure then originally thought. So Dr.Swift wants to keep a closer watch on the ventricles to make sure there isn't too much fluid and swelling after Trex has healed.
I am so grateful for every person who has reached out to us. Whether it be by donation, prayer, positive words, or even dinner :) Hoping to have some time this evening to send out more Thank You notes. You all deserve so much more then Thank You! With Love, ~JessicaKate
My last update was about a whole page long, not sure why only the first intro line went through.... I will repost it again later lol But in the mean time, just wanted to let everyone know that Triton has had a wonderful day! :)
I am in complete awe at the amount of support everyone has blessed our family with. I feel a transformation happening. Triton is a blessing beyond words. My hope is for each one you to meet him one day. Trex has a huge heart and it is my goal to show the world what true Love and Compassion are. All this support makes that goal attainable. Because Trex is true Love and he brings out compassion in all. Again and Again, Thank You and God Bless Each of You. ~JessicaKate
Triton has made a complete 180. He is sooo much better today then yesterday!! YAY! I will post some pictures later, if he lets me take one. Trex keeps covering his face and telling No when I try to take a pic. And that is not like him at all. Maybe he is old enough now to know he doesn't look like himself.... Not sure how I am going to explain to him "why" he looks different.... One hurdle at time.
Tritons recovery seems to be moving right along. The swelling is drastically going down and as of tonight his pain seems managed. The amount of prayer and positive thoughts are for sure the reason Trex is healing quickly. You all are wonderful!! Here is an old pic for throw back Thursday....
Triton arrived home last night around 8pm.Yay! The ride was pretty uncomfortable for him but I thought he handled it very well. It was nice to be home and you could see the comfort in Trex face when his head touched the pillow. After getting everything settled, he fell right to sleep. Woke up every 2 hrs with pain and discomfort. Unfortunately, we are limited on the type of pain medications he can have. Many of them cause intestinal inflammation and bleeding of the stomach which results in vomiting blood. Luckily that has only happened twice in the last 24hrs and once I can wean him off the pain meds hopefully that will stop completely.
During the surgery Trex lost half his blood. He was given another transfusion and they also recycled some of his own. The body naturally rejects this blood, so in the next 7-10 days his body will reject half his blood and create new. So I will be keeping an eye on that too. There are many details from the surgery that I will continue to post about. But in order to save you from reading a novel, I will post again later. Hug the ones you love daily. God Bless. ~JessicaKate
The out pouring of support for Triton is AMAZING. My little man will be able to continue on his journey with great strides THANKS TO ALL HIS SUPPORTERS! Triton is still in ICU recovering from his surgery. Doctors are willing to let us take him home once the last blood draw proves healthy and he holds down some solid food. That could possibly be today with many prayers.... So keep it up!
Triton is sleeping and vitals are doing well. His blood pressure drops really low every 10 min or so but that is usual after a major surgery like this one. He is very sick and we are going to have a difficult time controlling the pain. Because his stomach doesn't handle meds very well. I'm sure it's because he's spent most of his life on them. :( However, he is through surgery and is expected to make a good recovery!
Triton is doing ok. Should be out of surgery around 5:30. He's lost more blood then usual but it's all under control. I'm trying to imagine what he will look like with 80% of his skull reshaped! I will post a pic later is evening.
Finished with pre-op appointments. Triton did great. And they were able to stick him for blood on the first try!!!! Triton has always been a difficult stick (with needle), in fact the last time he was hospitalized at OU we checked out early because not one person in the hospital (who tried) could get an IV in. It's worth the drive to Dallas for a successful stick :)
Surgery is a week from today!!!!!!
Only 5 more days until Tritons Pre-Op! We will find out exactly what the Drs are planning to do. Been preparing Triton for this next surgery. He is so much more aware now. I'm worried this will be the hardest one on him yet. Prayers for his comfort are GREATLY needed. Thanks Everyone! :-)
We are a 5th of the way to our goal for Triton! Thank You everyone who has donated so far.
Here is the flyer! It didn't load the first time, hope it works this time lol
Good Day Everyone! :) As we are nearing Tritons surgery date, Sept.16th, some amazing high school friends of mine have taken the task upon themselves to raise money for Triton. These amazing women are donating their time and hard work for the benefit of my son. It touches my heart in a way that cant be explained. Happy, Joyful, Humble Tears. They have organized a Golf Scramble that will take place in Blackwell, OK on Oct.12th. I have attached a copy of the flyer. If anyone is interested in participating by playing or sponsoring, please contact one of the three lovely ladies on the flyer. Its wonderful to feel the type of love that these ladies are exuding by their efforts. Thank You!
We have a date! Tritons pre-op appointments will be Sept 9th and the CVR on the 16th. So glad to finally have a date :-)
Triton has been randomly falling down a lot lately.... and of course his falls always include a hit on the head. Im not sure if the pressure is creating a balance issue or if maybe he is just getting taller and his center of gravity is off, either way I don't like seeing him fall down all the time :(
Good Afternoon Everyone. Well, we are still anxiously waiting to hear back from the hospital for an exact surgery day. Last they told us it would be end of August/September. Triton has started showing more signs of pressure and I wish the surgery could be tomorrow!
Good Morning All! I wanted to let everyone know that I will be making changes to Tritons Fund page, however it is still the same fund. I have changed the profile pic to a recent photo, the last pic was a post-op from CVR#4. Also added a pic from his birth. I plan to add a before and after pic from all his CVR surgeries, just having some issues this morning with the upload time. This is the first time Ive ever put Tritons info all together for the world to see. But, its time to share our angel. So I am apologizing in advace for all the FB updates you will be receiving as info and pic are added over the next few days. As always, May God Bless You! ~Jess
Good Day Everyone :) On Tuesday we got up at 1:30a and made our regular roundtrip to Dallas for Tritons 6 mth routine MRI and appointments. Dr. Swift and Dr.Fearon were both very surprised at the amount of change in Tritons skull. There is enough pressure on the brain that his ventricles are restricted and it appears he is now completely unable to use or see with his left eye. So Tritons next surgery will be MUCH sooner than anticipated. This will be his 5th Cranio Vault Remolding. Usually only one section of the skull is done at a time. However, because of his unusual growth they will be removing about 80% of the skull this time. It will be broken down and reconstructed, they will also rebuild his forhead and eyebrow area. Basically this surgery will be like combining the 1st 3rd and 4th surgeries!! We should be hearing from the office within 3 weeks with a surgical date. Hope everyone reading this is doing well :) God Bless You.
I just wanted to say how blessed and loved we feel seeing all these donations on Tritons behalf. Thank You All! Triton has an MRI and multiple appointments in Dallas on the 18th, I will keep you all updated. With Love, Jessica
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!