Bryson's Blog

Living with Trisomy 13

Friday, July 21, 2006

Appointments in Syracuse

Bryson had his appointments in Syracuse on the 20th and Dr. Liptak seems to think that Bryson could be one of those children with Trisomy 13 that could beat the odds. He said his heart sounded strong with no apparent murmur as expected for those with heart defects as his. He said his lungs sounded clear and digestive tract seems all fine.

Now to map out a plan for Palliative Care. It may still be a few months and even years for some surgeries, but at least we have a better idea about what options may be open to us. There is nothing worse than telling parents that there is nothing that can be done and no effort to even consider it. Believe me, we've heard that more times in Bryson's 6 weeks of life than you can imagine. They also met with an Opthamologist who suggested that Bryson may be fully blind, but there are tests to be done to confirm that. We think that he may be able to see a little something, perhaps shadows and light. A geneticist was consulted and test were being done to determine if there is ever a possibility that other children that Dana & Travis may have could have Trisomy 13 or other problems.

Bryson is 6 weeks old today!

Monday, July 17, 2006

Breathing Problems

There were more apnea episodes yesterday with Bryson. He stopped breathing several times and as what has become the norm now, a few rescue breaths and he would start breathing on his own again. He is now receiving oxygen to keep his blood/oxygen levels up. Dana asked for from Hospice and finally received an Oxy-Hood which looks a little like an astronaut helmet. It only extends down to his neck and allows her and Travis to touch him and change a diaper without him being in an oxygen tent which is more like a plastic box. The thought of him being placed in a plastic box was disturbing. We are still hoping that Hospice can also get a pulse-oxymeter so we can continue to monitor his levels.

This Thursday, Bryson will be seen in Syracuse, New York by a Pediatric Neurologist who can help to determine the severity of his Trisomy 13 and to hopefully help us to map out a plan for his care. Dr. Gregory S. Liptak is a well regarded Pediatrician in New York State and has had many journals published on the care and treatment of Developmentally Disabled Children. He has been instrumental in the treatment of a young woman now 25 years old that was diagnosed with both Trisomy 13 and Trisomy 18. This is nothing short of a miracle! We look forward to him coming on board for Bryson's care and treatment.

Because there will likely be many trips to Syracuse to see specialists at State University Hospital, I will be setting up a fund to help Dana & Travis with expenses that they will incur. If you would like to help out, please e-mail me personally at dori_m@hotmail.com and I will provide information so that you can offer your support to this young family.

We have received many thoughts and prayers from many people from so many places both here in the US and abroad. Please continue to pray for Bryson, as he continues to grow and develop. Please also keep the Arritola Family of Georgia whose beautiful Angel Anthony became a Heavenly Angel on July 2. His mother Janina has posted to this web blog and she has imparted to us and other Trisomy 13 families invalueable information on the care and treatment of her son.

Friday, July 14, 2006

Introspect


Things are returning to "normal" for the Nault and McHugh families. I have been getting my own house in order since I left it to two men. I'll leave the details to your imagination. I do miss seeing Bryson, Dana & Travis daily, but we talk often on the phone.

Traveling back to South Carolina by myself I cried in at least 6 states. Wonder what the other drivers were thinking. It also gave me a lot of time to ponder the delicacy that life is. So many of us take it for granted. I see life through different eyes. It took an innocent newborn baby boy to do that. Oh how powerful this little guy is to one's spirit. Bryson has such spirit and will to live. You can sense that when you're around him.

I've begun to question many things too. I question why us? Why did such a rare chromosomal disorder have to effect this child, this family? What is God's role in this? Did He allow that extra 13th chromosome to slip into the mix? Or, did He give Bryson to us because he knew how we would love him more than any other family and take better care than anyone? Is there a lesson here to be learned? What I do know is that I feel things deeper, love more and purer than before Bryson came along.

And I'd give up forever to touch you
'cause I know that you feel me somehow
You're the closest to heaven that I'll ever be
And I don't want to go home right now

And all I can taste is this moment
And all I can breathe is your life
'cause sooner or later it's over
I just don't want to miss you tonight

And I don't want the world to see me
'cause I don't think that they'd understand
When everything's made to be broken
I just want you to know who I am

And you can't fight the tears that ain't coming
Or the moment of truth in your lies
When everything feels like the movies
Yeah you bleed just to know you're alive

And I don't want the world to see me
'cause I don't think that they'd understand
When everything's made to be broken
I just want you to know who I am

Thursday, July 13, 2006

Home Again, Home Again


Dana and Travis and now Bryson are home again in New York State, outside of Watertown in the small village of Copenhagen. We left South Carolina on Sunday July 2 and arrived in the wee hours of the morning next day 962 miles away from the sultry hot days of Charleston to the temperate cool of upstate New York. It is very rural there and beautiful.

I was not able to post to the blog as I thought I might because Internet access via wi-fi is kind of hard to do because I doubt that many of the local farmers have such technology. Internet is being installed in their apartment on Friday! Phones are hooked up and house is restocked after being vacant for over three months.

It was good to be there and help with the homecoming. It was especially rewarding to see Bryson laid in his beautiful crib with Classic Pooh designs. He was so alert and looked around, cooing and just amazing us, knowing he was in a different place. The right place, Home...

Saturday, July 01, 2006

Today's a better day


Today has been a better day! Bryson's episodes seem to have subsided. An adjustment to the Morphine, feedings, he needed a suppository to help things along and somehow maybe just another day and a combination of those things made the difference. He is resting comfortably, breathing normal and that brings us a joy you cannot imagine.

Well, Travis has to report back to Ft. Drum in Watertown, NY by Wednesday July 5th so that means we have to make a road trip. A very long one. That is far better than him having to go back to Afghanistan with all that has been going on. Dana and I depend so much on Travis' medic training to get Bryson comfortable. We've packed up the apartment and will load up 2 cars to make the trek. With the episodes going on, I have been extremely concerned about how difficult this trip could be. But now that they have subsided, I'm praying that all will be okay. I will be staying with Dana & Travis in their military housing outside of Ft. Drum to help get things set up, settled and arranged for Hospice Care. I hope we can find a Pediatrician there who has some knowledge, not just statistics for caring for an infant with Trisomy 13. I will ask for the pediatrician to call me so I can do an interview by phone prior to us wasting precious time and expense with an office visit.

Not far away in Rochester is an organization called SOFT. They are a support organization known worldwide for the support and treatment of children afflicted with Trisomy 13 and 18. I hope to be in touch with them right away to find local resources to help this family.

Please wish us safe passage on our trip to New York and please keep baby Bryson in your prayers. I do believe that God listened to us as we have so many people praying for him and gave him rest from his apnea episodes. Thank you God for hearing us.

I will continue to post messages on this blog from New York. So please keep coming back for updates.

Message from Bryson's Mommy


Hello everyone, I finally have found an opportunity to leave a message on this beautiful site dedicated to my son. This is Dana and the time being so early is that Travis and I have traded shifts so that we can watch him continueously 24 hrs a day. Bryson was cheating death more times than I could have ever thought humanly possible. During the course of 2 1/2 days he stopped breathing and was blacking out and was in dire need of cpr more times than we can recall. It was completely terrifying to witness the light in your childs life flickering to very dim to what at times looked like there was no lights on at all. But being a Nault has taught me a few lessons in strength and endurance. This little boy fought for his life and won!!! Right now he's peacefully sleeping and breathing normally!! His Daddy helped him to live because Bryson wanted to live, and Bryson and Travis worked together to survive the most harrowing experience. I am watching over my two strong men, as they sleep now I am able to feel relief that all will be well for a little while longer.