Bryson Elliot Allen Nault

Born: June 9, 2006  

Bryson’s Blog Spot

Update 4-20-08

Back in February, he had his cleft palate surgery and it all healed and eating voraciously! He loves to eat and hums “mmmm” the entire time. Bryson is healthy now after a worrisome bout with flu-like symptoms. He did lose some weight but has since regained 2 pounds. There are no surgeries needed or scheduled at the moment as he seems to be doing just fine. There are a couple of things we are waiting to see how things develop before any course of action is taken.

Bryson and his Mommy, Dana came to South Carolina for a visit with Grandma and Grandpa. He is getting to be a well travelled boy! It was wonderful having them here for two weeks as there are many things happening in the Charleston, SC area during spring. In June he will be 2 years old but seems to be going through the “Terrible Twos” early. When he wants his way, he’ll not stop fussing until you see his way of thinking. It’s not always fussing though, it is just wonderful to hear him giggle especially when he is the sunlight because of his low vision issues; he can see bright light. We just love Bryson and every time we see him, he has changed so much.

Doretta McHugh
Grandmother to Bryson

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Update 12-29-07

Bryson is now an excitedly wildly happily energetic 18 mnth old boy!! We are looking forward to another momentous year in San Antonio. This last year, the Naults have been through many tough times, but we all survived victoriously. The year ahead, well, there's no telling what to expect... but we'll stick it out, no matter how many dr visits, surgeries, scares, and strange situations we get faced with.

BEAN celebrated his 2nd un-birthday on the 9th of December. He is learning to eat and having a blast finding new ways to get messy. He was grabbing handfuls of cake and delightfully artistically decorating everything within a two foot radius!!!

He's learning to do a 5-point bear crawl, sit up right (just for few seconds), chew toddler food, drink with a sippy cup, pet our puppy, and say momma once in a while. He is so amazing, and it's such a gift to be a witness to his strength, his quirky personality, and hear his adorable little giggles and hearty laughs when dad plays with him. We are still in debate about his vision issues, but we are damn sure he sees light.

When he gets in the sunshine he lights up this 100watt smile like God himself was tickling his chin. We as parents can finally feel that he does have a grasp on his place in this world and the best quality of life that a boy like him could ever have.

It is our prayer that in the year to follow, we can further his capabilities, his development and his joy of life, by expanding on what Bryson was blessed with.

Dana & Travis Nault
allura_habibi@hotmail.com

Update: 9-28-07

Bryson is almost 16 months old now and is doing amazingly well! On September 19th, he had surgery to repair his cleft lip (see photos below). The Doctors at Wilford Hall at Lackland A.F.B in San Antonio, TX performed the lip repair and did a wonderful job. While he may look like a different child, the feisty little boy still dwells within.

Also while he was under anesthesia, his Opthamologist performed an ultrasound on his eyes to determine if there may be a way to help him gain more vision. The ENT performed an ABR to test his hearing and have found that his hearing is nearly perfect.

Bryson continues to progress and will be crawling any day now. He loves to eat, play and wiggle. He is very strong willed and a very determined little boy.

I want to thank you for providing this website as a community gathering to help provide information exchange and hope to families of children effected by Trisomy 13.

My thoughts and prayers go out to the parents and children as they continue on their unique journey with these special angels.

Sincerely,

Doretta McHugh
Grandma to Bryson Nault - Full T13
dori_m@hotmail.com

before and after surgery

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Update: July 16, 2007

Bryson celebrated his first birthday on June 9th. In attendance were family from all corners of the US and friends. We celebrated this milestone with a barbeque and way too much food!

He is doing well and this week is scheduled for his first surgery to place tubes in his ears and to cut the Lingual Frenulum. (where he is tongue tied)

Please keep him and his family in your thoughts and prayers as he has had a head cold and needs to get real healthy before the surgery.

Doretta McHugh, Bryson's Grandmother
dori_m@hotmail.com

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Pictures of Bryson Nault, now 10 months old.

The Nault family has received a compassionate reassignment from the Army to San Antonio, TX for Bryson's medical needs. The family was having to travel 75 miles one way in New York to see any of his specialists.

Bryson's new pediatrician is the parent of another Trisomy 13 child on this website. Who could know or understand Patau's Syndrome better than a parent of a child diagnosed with it.

Bryson to this date has not had any surgeries or interventions. We are beginning to look into future surgeries, but want to make sure his health is not compromised.

Submitted by Grandma

Update: 11-26-066
Here is an update on my Grandson Bryson Elliot Allen Nault, born June 9th, 2006. Bryson and his Mommy and Daddy moved from Charleston, SC to Fort Drum, NY where Daddy is stationed in the US Army. Bryson has been doing very well. He is now 5 months, 3 weeks old and weighs just under 13 pounds. He is bottle fed and no longer is fed by GI tube. He has begun to try some pureed foods as well. He is a feisty little character and has his good days and not so good days. There have been no surgeries to date. His Doctors want to wait until he is a little older before they perform any surgeries. He does have apnea episodes from time to time. In September, he began to have myoclonic seizures and is now on medication to control them. He is being seen by specialists in Syracuse, NY that have a lot of experience with Trisomy 13 and 18 children. Thanks to those Doctors, nurses, technicians, speech and physical therapists, social workers and volunteers from the community involved in Bryson's care and treatment so that he can grow and develop to the best of his potential.

I think back to those first precarious days after Bryson's birth and remember the hope you imparted to me, to not give up hope, to fight for the best chance for this little guy and to pray for miracles. I'm here to let everyone know we have great hope for this little guy, I pray daily for miracles and everyday is wonderful gift.

Sincerely,

Doretta McHugh
Grandmother to Bryson Nault - Full T13
dori_m@hotmail.com

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My name is Doretta McHugh.  I am  a first time grandmother to Bryson Elliot Allen Nault. He was born on June 9th, 2006 in Charleston, South Carolina.  He was diagnosed 3 days after his birth with Full Trisomy 13. He has what the doctors describe as a "textbook" case.  He has Scalp Defects; Cleft lip and Cleft Palate; microphthalmia, what appears to be a cataract on his right eye and coloboma in the left eye; Micrognathia; underdeveloped lungs; ASD; umbilical hernia; Cysts on his Kidneys and on his Spleen; one undecended testes and microphallus; Polydactyly on both hands and on his right foot; hemangioma on the back of his neck.  What he does not seem to have are the following: Low birth weight, as he was born full term at 9 pounds, 3 ounces!  Nor does he have microencephaly and he hears quite well.    
 
He is 2 weeks old today and doing very well.  After the initial shock and doctors telling his parents Dana (my daughter) and Travis that there was nothing they could do for him to take him home and give him love and comfort.  At 6 days old, that's exactly what we have did with Hospice Care on call.  The doctors suggested a DNR order which is so tragic for an infant.  The only extraordinary care we have had to give him so far, is to feed him through an oral GI tube.

We have found that if we get the feedings ready prior to his waking hungry, we won't have a "five alarm fire" on our hands. Once he starts crying, it's hard to get him to stop and the feeding tube doesn't work so well when his little stomach is clenched up.  He is a really sweet baby!  He has begun to try opening his eyes all he can.  He plays and coos and is generally a happy baby.

Submitted by Grandma - Doretta McHugh dori_m@hotmail.com   Grandma Dori's Blog