Bryson's Blog

1000 Oceans

2011-09-28T20:32:00.000-05:00

Happy News.

2011-05-04T22:53:00.002-05:00

I know I'm probably not the person that should be making this "reveal"", but I am very proud to announce that Dana and Travis are expecting. She is about 4 months along and it's been a hard first trimester, but getting better as time marches on. We are starting to make plans for maternity clothes, Baby Showers and another trip for me to Washington! I'm very excited and so proud of them both!

Longing for Bryson

2011-02-23T22:58:00.004-05:00

It's been a very long and hard year. 365 days of longing, of wishing that what is very real was just an illusion, was just a bad dream. Hoping that there would be peace and understanding of the profound loss, but yet I still grieve.

We all grieve in different ways. Some in total silence, some with verbosity. Sometimes with kind grace, sometimes unabashed. All the time with question of the what ifs, the whys, should I have done more? Could I have done more? Would it have made a difference? Would he still be here with us even then? Was his time on earth written somewhere? Is it that way for all of us? Did we just assume that because he had proved so many professionals wrong that he would forever be with us? It certainly seemed that way.

Life was more engaging, more challenging yet delightful with Bryson in it. He was the brightest shining star in my sky. He was my only grandchild. I should have taken more pictures. I should have left my job to be with him 24/7. These are things I will constantly wonder about all may days of my life.

As for tomorrow, rather than toiling with things I can never understand nor have the answers to or spend the day crying, I plan to spend the anniversary of his death doing something good. I want to take this day and pay it forward, in remembrance of the child that changed my life, the precious little boy who changed who I am. He changed a lot of people, for the better I think. He made his mark on the hearts and minds of so many people literally across the country and even around the world. So in his memory every year, I want to do something that spreads a little bit of love, kindness and grace. Bryson would want it that way.

A time for healing

2010-05-26T21:09:00.004-05:00

I know it's been a long time since I've posted last. The last post was the hardest thing I've ever had to write in my life. I never thought I'd have that message to send to those who have followed Bryson's story. The story of course doesn't end. We are still trying to cope with the loss of such a precious, dynamic presence in our lives. It will never be the same again. We are forever changed. We were changed the day that Bryson graced us with his presence. He was and I believe still is a ray of hope to others who are blessed to have a special angel brought into their lives. Dana and Travis have had to live through their grieving separately as Travis had to go back to Iraq in late March. Please continue to keep them both in your thoughts and prayers as they need their hearts to heal.

Dana has come to visit me here in South Carolina and I think the change of scenery has been good for her. She is in Orlando visiting her father Dan now. She will be back in South Carolina then we'll travel hopefully to Washington, DC and Indiana to see my father (her grandfather) who will soon be 91 years young! We will travel on a cross country trek and hopefully will take in the beautiful sights of this great land. I hope that perhaps we'll take time to see some of the great Museums in Chicago, Wisconsin Dells, The House on the Rock, Mt. Rushmore, Billings and Bozeman Montana, Yellowstone, Spokane and Yakima Washington and finally, back to Tacoma. Frankly I'd like another shot at Mount Rainier. Then I'll fly back home to South Carolina.

As for Dana and I, it's long drives in a car, going places, we've never been, new adventures, seeing nature, wandering out on our own that will be most healing for both of us. To reconnect, to reflect, to enjoy each other's company, to bond. She and I are more like girlfriends sometimes that I have to remind her of TMI! Too much information! There are some things Moms just don't wanna know. We are very close, similar in many ways but different in many others. She is more progressive, and I am conservative. I wish I had a dollar for every time someone mistook us for sisters. What a compliment to me and I might be biased, but I think my Dana is beautiful, charming and funny.

There's so much too see, so much to do and I like to travel with my kids. This time, it will be a bit like Thelma and Louise, saying the heck with the rest of the world and the way this year has been so hard on us, except I promise we won't be outlaw heroines like Thelma and Louise. Maybe there will be a Brad Pitt type character that can squeeze into the back seat of a Honda Civic! One can only hope...

Bryson is a Heavenly Angel

2010-02-26T09:54:00.003-05:00

It is with great sadness that I have to tell you all that have followed this blog for the last three plus years, that Bryson has gained his Angel Wings. He was an angel sent to this earth, to this family to teach us about unconditional, complete and fulfilling love. He did all that by just being Bryson. He passed away on Wednesday afternoon at 3:23 p.m. on February 24th, 2010. His mommy, Dana, the one who put so much of her life and love to care for Bryson was by his side. He went bravely, he went peacefully with no pain as he enters into the next realm. There will be no more pain from this earth or from his fragile body. He taught me so much in his short 3 years, 8 months and 15 days. He taught me how to never take anything in life for granted. Every day is precious. Every day should be lived with the strength of will and perseverance that he showed to us. We should all be so brave. He taught us all what it is to love someone without rules, without boundaries, without conditions. He drew us all closer as a family. Bryson's memory will be preserved with our memories of loving him.

To those doctors, nurses, case workers who all could see something extraordinary in Bryson by giving him the best and appropriate care, we thank you from the bottom of our hearts. Thank you for not seeing a disability or diagnosis, for seeing a little child with special needs in a special place in our hearts. Please learn from Bryson, that just because a textbook says one thing that as an human being, we chart our own paths, we do as our will tells us to do. It was Bryson's will to stay with us long enough to complete his objectives, to teach what the human condition of love really is all about.

New Year 2010!

2010-01-05T21:51:00.002-05:00

The picture above is Bryson, Dana and Joanna the Weekend Night Nurse. We stayed at home and watched the ball drop at Times Square and again we saw the fireworks display at the Seattle Space Needle from the comfort of a sofa. It had rained all day and cleared up around 10:30 p.m. just in time for the New Years revelers to enjoy the night.

I traveled back to South Carolina on the 3rd and got hung up in that chaos at Newark Liberty Airport. There was a security breach around 5:20 p.m. What a total mess! We were even lied to by staffers of the airlines. TSA fell asleep at the helm and an idiot walked in the Exit area bypassing the security checkpoint. This exit area is wide and didn't appear to be monitored closely. I was clearing the security checkpoint around 5:30 because my plane to Charleston was supposed to take off at 7:20 p.m.and I wanted to catch something to eat before I took a shuttle bus to Terminal A where my plane was to depart. I sat directly in front of the window where my plane was supposed to park at Terminal A, and finally around 7:00, the Continental Airlines Gate Rep announced that they couldn't find our plane. The person sitting next to me going to Halifax stated that her Gate Rep said they had a plane, but no crew! TSA was all over the place! It was a mass of humanity with no sitting room, people standing, lying everywhere. If there had been a fire or some other thing, there would have definitely been deaths from the stampede. My layover at Newark was a long one and was only made miserably longer from the security breach. No planes were leaving and no incoming traffic left the tarmacs. Surely there's a better way than this!!!! I will never fly though Newark ever again! Ironic that it's named Liberty, yet I felt like I was held captive.

Pictures of Bryson

2009-12-29T22:37:00.005-05:00

Bryson receiving Physical Therapy with Nurse Nancy

Kicking back with Mommy

Awake with Trainer Teddy Bear

Christmas in Washington

2009-12-29T22:19:00.006-05:00

It was a Merry Christmas at the Nault Home. We went to Fantasy Lights in Spanaway, WA. There were many great displays. Laura liked the spaceship display while I liked the Santa on a motorcycle jumping huge gift boxes. The tree in the picture above was completely covered with lights on every limb. I can't imagine how much time that took to do!

We went back home and opened gifts on Christmas Eve while Travis was on Skype with us. Santa was good to Bryson because Bryson has been a sweety boy this year.

Happy Birthday to Dana

2009-12-29T19:19:00.004-05:00

Plum Wine...good to the last drop

Dana, Laura & Samurai decked out for Christmas

Dana & her reluctant 30th Birthday

On Sunday, December 20th, we celebrated Dana's BIG 30th birthday. She doesn't want to claim the number and insists it's her 2nd 29th Birthday. So being brilliant, she thought she'd change the number I imprinted on her birthday cake to a 29, but instead changed the second digit to a 2 and not the first digit, hence making herself 32.

We went out for dinner at Samurai Japanese Restaurant. The flames, the plum wine made Dana a little warm so she tied her hair up with chopsticks.

Bryson is back in the Hospital

2009-11-26T17:37:00.002-05:00

Bryson is back at Madigan Army Medical Center in the Pediatric Unit. He's not been able to keep down his feeds and started having diarrhea so he's not feeling too good right now. Afraid of dehydration, Dana took him to the ER last night. This is really been a rough Thanksgiving for her and Laura, a dear friend that has moved there.

This past week, one of the nurses left with no notice so that leaves them once again without much needed help. This whole situation just really stinks.

I will be going to Tacoma next month for Dana's birthday, Christmas and New Years. Hopefully I can offer some assistance but will need a lot of teaching and coaching as I don't know how to take care of Bryson's newfound needs. I will gladly do anything for Dana, Bryson, Travis and of course Laura so they can have some much needed relief.

I hope everyone has had a good Thanksgiving.

Prayers needed

2009-11-15T11:50:00.003-05:00

Please keep Bryson in your thoughts and prayers. He is having some very serious heart issues. His heart rate keeps dropping dangerously low and is having arrhythmia's. This past week or so, he's been having a difficult time keeping his food down and he is very sick right now. We are all very worried at this point and all that can be done is just keep him comfortable. Dana held him all night long.

She contacted Travis through an emergency call through the Red Cross and he called her back shortly afterward.

I have just talked to Dana by phone and Bryson is doing better this morning. His heart rate has returned back to normal levels. It was a very rough night though and she hopes take him to the doctor tomorrow to find out what is happening to our precious BEAN. We hope that we can have some answers soon.

On Being Bryson

2009-10-19T19:54:00.003-05:00

I apologize for not writing too much to this blog as of late, but it is extremely difficult. It is difficult to find the words to express the profound sadness in my heart about Bryson and his venture into what is now referred to as Persistent Vegetative State. I've tried to read as much as possible about PVS and there is so much that is hypothesized. Why? Because the likelihood of someone returning to a state of conscientiousness from PVS is rare or even if it did happen, then it was likely that the person was not truly PVS. In a recent study of 40 individuals thought to be in PVS, they were misdiagnosed 43% of the time.

Q: What is PVS?

A: The vegetative state is a clinical condition of complete unawareness of the self and the environment, accompanied by sleep-wake cycles, with either complete or partial preservation of hypothalamic and brain-stem autonomic functions. In addition, patients in a vegetative state show no evidence of sustained, reproducible, purposeful, or voluntary behavioral responses to visual, auditory, tactile, or noxious stimuli; show no evidence of language comprehension or expression; have bowel and bladder incontinence; and have variably preserved cranial-nerve and spinal reflexes. We define persistent vegetative state as a vegetative state present one month after acute traumatic or nontraumatic brain injury or lasting for at least one month in patients with degenerative or metabolic disorders or developmental malformations.

The clinical course and outcome of a persistent vegetative state depend on its cause. Three categories of disorder can cause such a state: acute traumatic and nontraumatic brain injuries, degenerative and metabolic brain disorders, and severe congenital malformations of the nervous system.

Q: What is the prognosis?

A: We don't know...no one can really know. Here are some findings from the New England Journal of Medicine.

Outcome for Patients in a Persistent Vegetative State (PVS) after a Traumatic or Nontraumatic Injury.

Fifty-two percent of adults and 62 percent of children who are in a PVS one month after a traumatic injury recover consciousness within one year. The majority recover within the first six months; recovery after six months is unusual. In contrast, for patients in a PVS one month after a nontraumatic injury, recovery of consciousness is much less frequent (15 percent of adults and 13 percent of children) and is extremely unlikely after three months. Approximately 5 percent of patients in a PVS 1 month after injury were lost to follow-up at 12 months.

Q: What is the incidence of recovery in Children with PVS after 12 months?

A: Traumatic Injury ( n = 106 )
Death 9%
PVS 29%
Recovery of Consciousness 62%
Severe disability 35%
Moderate disability 16%
Good recovery 11%

Non-Traumatic Injury ( n = 45 )
Death 22%
PVS 65%
Recovery of Consciousness 13%
Severe disability 7%
Moderate disability 0%
Good recovery 6%

Data were collected from a series of patients in PVS one month after injury and do not include individual case reports. Some patients who recovered consciousness died within 12 months after injury or were lost to follow-up. The data for non-traumatic injuries reflect all causes, not just postanoxic injury; for this catagory alone, the prognosis is poorer than that suggested by the data

Data for functional recovery are for patients who had recovered consciousness within 12 months after injury.

Back Home Again

2009-09-22T22:16:00.002-05:00

Bryson came back home again on Saturday. Nursing care has been switched to nights. Daisy is working the night shift Monday through Friday and Doug on weekends for now. He is doing okay now.

I am in the process of adapting clothing for him to wear as it is difficult to dress Bryson. Tee Shirts are near impossible to put on him as he has his feeding tube and traech that would get in the way. I bought some tee shirts in a larger size and have cut them from the neck down the sleeves and placed velcro tabs on the openings. They make a soft velcro for babies now and that's what I'm using. I hope it works out. I have a few more to finish and a special surprise to make and I'll ship them off sometime this week. I hadn't thought about it but there really is a need for adaptive clothes. They make them for adults, but there is nothing on the internet for children. If it works out, perhaps, it's a business I could start. Through the years I've found it terribly hard to find toys and theraputic things appropriate for Bryson and what is offered in Adaptive Catalogs such as "Abilitations" is quite expensive and has limited use. We've had to be very innovative when it comes to Bryson, his care and development. It's really amazing some of the things we've come up with. All very ingenious.

Relapse

2009-09-18T20:47:00.003-05:00

Bryson has had a relapse. He was placed back in the hospital on Tuesday Sept. 15th. His saturation levels dropped to the 80's and his secretions were a little yellowish. Dana called EMS because the home equipment was not working properly. As soon as EMS got their oxygen to him, his sat levels started to increase. They transported him and while in the Pediatric Unit at Madigan Army Medical Center, he started having seizures. They are working to get Bryson well with antibiotics to treat whatever bug was making him sicker and now are adjusting his meds for the seizures. Seizures often come after Traumatic Brain Injury and he had been on a mild dose of dilantin, more as a preventative, but now that the lesions in the brain tissue may be causing the seizures, they are having to take a second look. His heart and his breathing have remained normal, even through the seizures.

It is hoped that he can come home again perhaps tomorrow, and hopefully with more approved nursing care.

Please keep praying for Bryson, his Mommy and his Daddy who is now down range.

Dori

Home Sweet Home

2009-09-10T19:35:00.003-05:00

Bryson was discharged from the hospital and is resting and recuperating comfortably at home. Daisy his nurse started today. I am so glad he's able to be home in his own bed, in his own environment where he is loved.

I don't have too many details, but will write more as soon as I know more.

Please keep them in your prayers as they transition into a different way of life.

Update

2009-09-08T23:02:00.003-05:00

I apologize for not posting for a few days for those of you that have been following Bryson. I got back to South Carolina Sunday Evening and spent Labor Day laboring to get my house back in order.

Bryson is likely to be discharged from Madigan Army Medical Center tomorrow. Dana and Travis are ready for him to come home. His bedroom is all ready and set up for his needs. Thursday Olympic Pharmacy delivered all the medical supplies and equipment to make Bryson comfortable at home. There was so much stuff it seemed overwhelming at first, but once we got some storage systems that will work to keep things organized and tidy it was looking like a little boy's bedroom again with bright stripes of all colors and feels really homey. Not a hospital room. Travis has installed a flat screen TV so Bryson can watch Rescue Me with his Mom.

Dana got to change out the Traech tube today and she said she was really nervous, but Dr. Boseley boosted her confidence and she decided it wasn't so bad after all. That will need to be changed weekly at a minimum. There will be daily maintenance and cleaning and suctioning of the Traech. Daily, he'll have his medications and vitamins. He'll have a continuous feed line. He's now up to 30 ml per hour so he's on the right track. Before he got sick, he was 30+ pounds, but dropped down to about 25 and last week he was up 2 pounds. He'll need daily physical therapy to keep from having his muscles atrophy or his joints become stiff. They even have equipment that will be available when she needs to take him to appointments. He was fitted for a new car seat and his Bingo Stroller is being modified to his new needs.

The Sleep Safe bed has been declined, but hopefully an appeal will overturn their decision. He really needs this type of bed as the head of it inclines so that his food stays down so as not to aspirate. His immobility also makes this bed necessary as he needs to be turned and repositioned every 2 hours.

I finally got to hold Bryson on Thursday and it was very cathartic for me and hopefully Bryson. I sang to him songs that I used to sing to him when he was a baby. He opened his eyes ever so slightly and was looking at me. I know Bryson is in there and wants to come out and play. He just needs time to heal and get strong again. I pray for that day to come along... soon.

Many things to Celebrate!

2009-09-02T14:01:00.001-05:00

Not only are we happy to celebrate Bryson coming home, but tomorrow is Dana & Travis' 4th wedding anniversary. AND Travis just yesterday made Sargent! We are so proud of him. He deserves it!

Getting Ready for Bryson to come home

2009-09-02T13:41:00.002-05:00

We've been working the last couple of days getting things in order for Bryson to come home. He'll be discharged either Saturday or Sunday according to the doctor that performed his Traecheostomy.

Bryson is doing so much better. His color looks good, he's moving around more, but today he was getting kind of stiff which he will need a lot of physical therapy to prevent that from happening. He has had splints made for his hands to prevent them from curling up into a fist. We bought him some Uggs boots to keep him from getting drop foot from being in bed so long. The muscles tend to atrophy from lack of use and they draw up and become rigid without regular therapy to keep things moving. The physical therapist also said that helping him to sit up will also help with his therapy. This is exactly what is planned once he gets home.

We are having to set up the crib again and get baby blankets as if we were bringing home a newborn. The Sleep Safe bed is on order and we don't know how long it will be until that arrives, hopefully soon. To see a Sleep Safe bed visit: http://www.sleepsafebed.com/Products/sleepsafer.htm
It works very much like a hospital bed, but is more pleasing to the eye.

Dana is coordinating getting his Home Healthcare on board for when he comes home.

Traecheostomy was performed

2009-08-31T21:11:00.003-05:00

This morning, Bryson had a Traecheostomy (or Traecheotomy) in the 10:00 hour. Everything went well. It was only a half hour procedure to place a traech tube in his airway. He has been breathing so much easier and deeper with the traech in place. This will help to keep his airways open and that his tongue falling back would not be an obstruction. Secretions will also be able to be suctioned out better. Now a Traech does come with risks, however, any type of procedure comes with risks, but we felt that this was something that would help Bryson. The Traech tube will have to be changed out in a few days and Dana & Travis will be trained on the care and upkeep of the tubes.

After another week in the PICU, as long as everything goes well and Bryson does not have any setbacks, he can be transferred back to the Pediatric Observation Unit and from there he could be discharged to the care of Dana & Travis and the home health care nurses. As of this writing, and prior to him having a traech placed, he was eligible for 8 hours a day, 7 days a week nursing care and 40 hours respite care per month for Dana, however, since things have changed and due to his unique situation, they may possibly be eligible for more. It will all depend on what his doctors will authorize.

It's been a tough 2+ weeks, but Dana & Travis are holding strong that Bryson will do his best healing at home. Travis has been the best at making sure that Bryson is given every opportunity to survive and progress past this, despite what doctors, neurologists, pediatricians, respiratory therapists may say to the contrary. Dana is strong too, but being a worried Mom and nurturer, it is easy to get dishearted by what many of them say to us. I admire them both for their tenacity and dedication to my precious Grandson and thank them for all the things they do for him and will continue to sacrifice for his good.

Continued prayers for Bryson for healing and to Dana & Travis for continued strength and resolve.

Setback-not coming home (just yet)

2009-08-29T12:14:00.003-05:00

A couple of days ago, Bryson had a setback. His CO2 levels got very high, in the
70s though his oxygen saturation levels were fine. This means that even though he was breathing in enough oxygen, he was not expelling enough of the CO2 gases and it can become toxic. His feeds through the NG tube were also not working as he was vomiting a couple of times and that causes concern of aspiration. We came to find out that one of the nurses gave him the wrong type of formula, one that he did not tolerate when he was on formula as a baby. They switched back to the correct formula and reduced the intake to give his stomach a chance to handle it gently.

Dana & TRavis talked to the ENT (ear nose throat) and the Traecheostomy (if there is to be one)is not scheduled until Monday or Tuesday and then Bryson will have to be transferred back to the PICU unit. They didn't want to do it on Friday over the weekend when the hospital is nearly a ghost town. The docs are only on call during the weekends. This would give him a week in PICU with their full attention again.

If he could just start swallowing and coughing better and to keep his airway clear, would be wonderful and the traech may not be needed. He will also have to be on a C-Pap machine and that will work fine with a traech as sometimes, his tongue will obstruct the airway.

He is stiring a bit more these days which is also a good sign. But the Neurologist doesn't feel that his movements are cognitive movements, only reflex. I'm not sure. He responds to his Mommy & Daddy differently than he does with the Neurologist, whose job is to poke and prod and cause pain for a reaction. We take a much gentler approach.

Dana & Travis have also interviewed 3 Home Health Care Nurses to find a good fit. They bring many years of experience in Pediatric Nursing to the table and since they have to work in Dana & Travis' home, they will also need to be non-conventional in their approach to Bryson's care and development as they have spent three years challenging Bryson to do more, to adapt to survive rather than to just be a Faberge' Egg.

Transferred to Pediatric Unit

2009-08-25T23:16:00.003-05:00

Bryson is out of the Pediatric Intensive Care Unit and is in the regular Pediatrics Unit at Madigan Army Medical Center (MAMC). The room has a direct view of Mt. Rainier and he's the only one in that room of 4 beds total. So basically, it's still a private room. He is receiving nutrition by NG tube and has only oxygen via nasal cannula. He is beginning to stir a little bit more when touched and talked to so things are so encouraging. This time a week ago, we weren't sure he was going to pull through this, but just as his usual thing, Bryson shows us who is boss.

It's looking like Friday, he may be discharged from the hospital to come home! They are working with agencies to get certain equipment for the home and a special bed for Bryson. The bed is a Safety Bed that can be lowered and brought up, can incline the head of the bed just like a hospital bed, but doesn't look so clinical. It has sides that flip down so that you can get to him and acrylic glass on those panels. He may now be entitled to some nursing care now that all this has occurred. His wheelchair/stoller will have to be refitted to his specific needs now.

He will probably have another MRI done in about three months to check on healing again. It will be a long road ahead and we don't know the long term prognosis for him developmentally, but, he is still here with us and that is all we could hope for.

Miracles happen and Bryson has been a living miracle.

Grey Matters

2009-08-24T23:29:00.003-05:00

Today, Bryson had a second MRI since his brush with death on Friday August 14th. The results were better than expected. The Neurologist, Dr. Yoder said he had no bad news for us for a change. What showed up on the first MRI were large areas of white damaged or dead brain cells and swelling. What was showing up today only was small effected areas. Grey and variants of the color grey are normal tissue of the brain. So, the swelling is down, and healing is occuring. This was what we had been holding our collective breaths to hear.

Bryson is breathing on his own with only a canula ped mask that has a penguin on it. The cute medical equipment makes a hard situation seem a little easier. He still needs to start protecting his airways with swallowing and coughing. It's taking a little longer with Bryson than perhaps a typical child to come around, but we are patient and very grateful for the strides he is making. Again, Bryson does not cease to amaze me for the will he has to live.

Thank you for your continued prayers, they are bringing us miracles everyday.

Our little fighter

2009-08-22T23:19:00.003-05:00

Bryson is now off of the vent completely! The docs extubated him (removed the ventilator tubes) He only has a mask now that delivers oxygen. He does have secretions that have to be suctioned out to keep him clear. He was given a steroid to help heal the airway and epinephrine to keep his airways clear. The next hurdle is to get him to start coughing, swallowing to protect his airways or there is the danger of aspiration of those secretions. He is repositioned in his bed every two hours to help the lungs drain of excess fluids or pneumonia can settle in his lungs. His Grandma Tammie got to hold him since he didn't have so many tubes to contend with. Hopefully I will have that opportunity soon as I want to hold him close.

He is an amazing little boy to have gotten so far after such a horrible tragedy. He is beginning to come around a little bit by fluttering his eyes. He is out of it mostly as he is working very hard just to breathe. The breathing rythym is not what it should be, but then, perhaps that's "Bryson's normal" with his central apnea. He will breathe deep and regular, then have one big inspiration, then "bottom out" and about 8-10 seconds later will take shallow breaths only to go back to a regular rythym. We have found that auditory stimuli will get him back on track.

Yesterday, the weirdest thing was happening so we had to call in the doctors and Respiratory Therapists to show them what was going on. Bryson has this Winnie the Pooh, music box that was part of his crib mobile. We would wind up the music box, and while it was playing normal, his breathing would stay on track, however, as with all music boxes, they eventually wind down. So when it started to slow, his breathing would slow with the pace of the music box. When it would stop, he would bottom out. We'd rewind it and lo and behold, would start back to a normal rythym. We kept winding that thing for hours until he was able to establish his pattern

Thank you to those of you who still continue to pray for us. We are so awestruck that Bryson has come so far. Keep the prayers coming.

Important Day

2009-08-21T23:17:00.001-05:00

Saturday, is a really big day. The doctors will extubate Bryson to see if he can tolerate being 100% on his own breathing with no tubes and vent and if he can protect his airway with coughing and swallowing. We will also be able to tell whether he can be further assisted with a traecheostomy to keep his airway clear. It is our hope that he will be able to do this all without a traech. Then come Monday, there will be another MRI to see if damaged areas of the brain are rejuvenating and healing. If he can breathe, swallow and cough and/or with the assistance of a Traech, he may be able to come home with hospice care. He will likely have to have a nurse 24/7. Nutrition at this juncture is planned only with an NG tube as we don't want to subject him to surgery for a GI tube at this time.

We don't know at this point what Bryson's long term development will be like as he is back to being pretty much as he was at 2 weeks old. We are holding out hope that some of the little boy we knew just last week will begin to shine through and bring us laughter and joy again. It will just take time, love and patience. This family has all of that and more. Because Dana & Travis are such wonderful parents to Bryson, they will fight to challenge him as that's how he got as far as he did and still exceeds everyone's expectations.

The doctors are pleasantly surprised at how Bryson has been progressing and they are with us in challenging Bryson to get better. I think they are beginning to find out what a true fighter he really is. Just telling them that he is a fighter isn't enough, they had to see it for themselves, and they have.

I have the utmost respect for the team treating Bryson at Madigan Army Medical Center. They have been caring, compassionate and honest with us every step of the way. They have answered every question we have made to them with candore.

I hope to be able to share further good news with you all soon.

Thank you for continuing to pray for our Bryson. Your prayers are being heard.

Breathing a little easier

2009-08-21T00:37:00.004-05:00

Dear Family & Friends,

So that everyone will know what's happening here in Tacoma:

As you may already know, Bryson stopped breathing last Friday. We now know that he did have a hearbeat, although, very slow and very faint. EMS was called and they used epinephrine (adrenaline) to get him started. What we don't know is how long he was without oxygen. It only takes 4-5 minutes for the brain to be deprived of oxygen until damage begins to occur. He does have some brain damage, however on an MRI, the normal brain shows up as grey while the effected areas show up as white. How much of that white area is dead brain cells and damaged brain cells, you cannot tell. Dead cells get absorbed into the body and damaged cells can heal and regenerate. The neurologist conducted a EEG (electro-ecephalagram) on his brain to measure brain wave activity. It was grim. They said that all they got was static, however, one of the medications he was on, has been known to also cause this static. The medication is versed and it is administered to stop any seizure activity. He does not have any seizures. They took him off the versed and waited 24 hours to perform another EEG on Wednesday. The result came back that the static was indeed caused by the medication.

The reasoning behind these tests were to find out if there was damage to his brain stem. Without the use of the brain stem, there is brain death and all involuntary systems, i.e. heart, breathing are compromised and hope for life without total support by artificial means is lost. So the next step in this process was to see if Bryson could handle breathing without 100% support from the vent. The lead physician, tried to run an arterial line for blood gas readings. He had difficulty finding a suitable artery and had to use one of the existing central lines Bryson had. (Arterial being far more true than veinus readings for blood gases as the Arteries carry oxygen enriched blood throughout the body while veins return it back) Respiratory therapists, his intensivist, pediatricians were all present to see how he would react with aid of the vent was reduced to what they call a "blow by". This means the vent is providing 100% oxygen to the airway, but does not use any pressure to force it into his lungs. It was all up to Bryson to do the work that the vent had been doing since Saturday. Sure enough! Our boy came through and was breathing on his own and has continued to do so since 12:30 p.m. today. They drew blood gases to make sure his CO2 levels were not too high and each VBG (veinus blood gas) came back good! Now we can all breathe a lot better. This is extremely encouraging.

We are still not out of the woods by any means though. This coming Monday, they are planning to conduct another MRI to see if the damage is healing and how much really was damaged and how much resulted in dead brain cells. (hopefully less than they think) Bryson continues to shock and awe these doctors as he has done from DAY ONE! They don't know him like we do and we know of what wonderful miracles he has in his big bag of tricks.

He looks really good. He doesn't look sick. He does look though, like his muscles are starting to atrophy from lack of use. He is floppy like a ragdoll, but is that due to the Fentanyl and being so tired from fighting so hard? They have reduced his medications to only just enough not to fight the tubes running from his little body.

They also withdrew the interveinious feedings and have now gone to giving him nutrition by NG (nasal gastrointestinal) tube. This is how we had to feed Bryson right after he was born and we did so for 5-6 months. He loves to eat so it will be good to get something into that stomach.

Yesterday, they finally granted Dana her greatest wish, to hold her baby. It was cathartic for perhaps both of them.

The doctors here at Madigan Army Medical Center (MAMC) are some of the most caring and compassionate doctors I've ever met in my life. I've never known a group of doctors and interns, sometimes 6 or 7 of them come into the room at the same time and spend as much time as an hour to an hour and a half, to talk to us and answer our questions and set a game plan for that day or the next. This is healthcare as it should be! The hospital is very nice and there are courtyards with babbling brooks and green spaces to rest a weary soul. There are huge picture windows that frame Mt. Rainier in the distance with American Flags in the forefront. It's awe inspiring.

Your prayers have brought about miracles. We are witness to it every day here. Please keep those prayers coming as we hold vigil at his bedside. Thank you for your prayers.

Long days

2009-08-18T21:39:00.003-05:00

It's been long and difficult days for the Nault family. Bryson is in a state of "limbo" if you will. We don't know at this point how things will play out. He is on a ventilator, he has brain damage from the lack of oxygen as it is hard to know how long he wasn't breathing. A Medic that came to visit us today said it only takes 4 short minutes for damage to occur. The damage comes from fluids accumulating in the brain and the pressure that ensues. On Saturday, he was breathing on his own, responding, but apparently 72 hours tells the tale of the fluid build up on the brain and that's what has lead to the situation we are in with Bryson. His heart is strong and beats like a champion. We don't know if the twitches he has are as a result of direct response to our touching and kissing him or is it the nervous system's automatic response. This week, we will be able to know more as his body tries to heal from it's trauma. The eeg (electro-encephelagram) and a follow up MRI are planned. He is not in any pain as he is on medications to sedate him. He looks like an angel he is truely a beautiful boy.

This is an extremely difficult time for Dana & Travis as you can imagine. There are difficult decisions that no parent should ever have to make for someone so young, so vulnerable. We all love Bryson for the wonderful, funny, charming, giggling sweet little cherub that he is and we desparately wish we could change what happened. There are no do-overs in life and this is the hardest thing any of us have had to face in our lives.

Please keep Dana & Travis and Bryson in your prayers.

2009-08-17T17:40:00.000-05:00

Sad News

2009-08-16T21:40:00.002-05:00

Hello all... I know owe an apology for not keeping those of you who are dear to us and Bryson updated. things usually go very well day to day..... until this last Friday when Bryson's heart stopped. It was a full cardiac arrest and we where unaware that he had stopped breathing as we had only just put him to sleep. He aspirated the juice we had given him last and may have been without a breath or heart beat for several minutes before Travis had found him.

And this is a Testament to the kind of man and medic my husband is, he worked on him to revive him for 6 to 7 minutes and I called 911. Shortly after they arrived, the EMT's gave BEAN a epi pen and a faint heart beat was heard. Today he is in stable condition at the hospital here called Madigan ARmy medical center. It's still very scary as we don't know how long he was dead for until his breath came back to him. He is breathing on his own with assistance from a ventilator and is under heavy sedation so not to be irritated with the tube down his throat. We are certainly not out of the woods. Bryson may never be the same, and if there is swelling in his brain from lack of oxygen, tonight will tell which way the tide will turn for him. But as those many of you who know our BEAN, he is a valiant fighter and strong at heart and still very young enough to recuperate from such a traumatic event. We are camped out at the hospital for a while and will know more in the coming days after mri and eeg results will tell some about the condition of his brain. And then following that to see how he tolerates breathing with less assistance from the vent and hopefully decreasing his sedatives so we may see our boy shine through.
But that is the hopeful side and that's all that I want to share so that if you are the praying kind to know what to ask GOD for. I wont go into the details to break any hearts tonight, but I will do my best to keep posting as things change so that as time goes on that we may be in your thoughts and prayers. Tonight he is resting peacefully and is an angel to behold. My little cherub is so precious!!!! I kiss him so much now that he's not wiggling so much so that each of you who wish your kisses, that prescription is being filled always. We are staying steady by his side so emails or phone calls may be missed for a while so please be patient with us as we concintrate diligently on our boy. I would appriciate your thoughts here on this page so the are saved with the words of this blog dedicated to the most charming sweety boy I've ever known. Thank you.

Where in the World did the Naults Go?!?!

2009-02-02T23:11:00.006-05:00

Must have seemed like we fell off the map for a long while to some of our folks who check this blog. Well here's the scoop. We up and scooted off to the wonderful state of Washington. It's a damn sure long way from the hell pit of Texas we were eager to leave.
And WOW the adventures we had, we took a minute detour in Las Cruces NM, which was the very picture of the southwest at its loveliest, then up to Pheonix AZ. There we stayed with my aunt Marilyn who was a totally awesome and gracious host. We discovered rockhounding and stumbling upon cactuses of every variety. I met up with Rebecca, a friend whom I've known since the 5th grade, and for a military brat to maintain a friendship that enduring is a feat and you'd never suspect we missed a day in each others lives the way we got along so well after 17 years.
Then after we departed Pheonix, we were onto Las Vegas, FOR CHRISTMAS!!!! Well, we didn't strike it as rich as we imagined it to be. It's not the sort of place you take the kids to have a good time, but amazingly enough we did a little work before we left San Antonio to find a sitter for Bryson so mommy and daddy could have grown up fun in the casino. Alexis was so charming and got along great with Bean just hanging out in the hotel room while Travis and I went down stairs and had the date of our lives!!! I wish her the best with her pregnancy! She was so good to let us poor parents off the hook for a couple of hours. I mean lets not forget that Vegas is the ultimate escape for adults. There was a moment when we had to walk through a casino with BEAN to find a restroom, and it was like everyone was holding their breath as we walked by and stared us down, mentally screaming at us to get him out of there, because baby's are bad luck, but not our boy!! So we all ventured around the strip mostly in the car for a few days and there is definately the possibility for a return visit.
Then we turned our sites to San Francisco to hang out with my enchanting cousin Randy and her rand-bunxios family. I gotta say cuz, you sure got a handful of handsome men on your hands, and another hand to cradle that new baby?! Can't wait to find out what's on the way!!!
California is the most geographically invigorating state. Its sooo different from end to end that the drive through was INCREDIBLE!!! Hwy 101 is the scenic route to the top and there was no dull moment or lull in the journey upward. I must say I've fallen in love with the West coast the second we got on that road. Have you ever actually seen where the happy cows from the comercial live?!?! I have, and you could stamp a brand on my ass and happily I'd live where the happy cows do. Such landscape is worthy of a fresco painting in the Smithsonian.
On from there, we stayed the night at a beachside hotel in Crescent City CA. It was such a charming town, and just to back track a little we spent a little extra time there to check out the Redwood Sequoias. The heights of which you can only imagine because from the trunk, you cannot see the tip, you cant even fathom the ages of these fantastic trees. The stories those old trees do tell. I loved that part of our expedition the best!
But our destiny awaited us elsewhere, so we headed on, now no stopping for any other off-roadside attraction excursions. To Washington, where beauty and bravery sip coffee at the same corner shop cafe. We got into town just in time to start our new year and new lives. Most days are rather grey as winters usually are, some snow which is even peculiar for the locals, and some days the sun breaks through and shines heavenly light on this marvelous place. The view of Mt. Rainer is unmistakable as it looms in the background, the lay of the land is truely evergreen.
I'm smitten with our new home. We got a gorgeous huge duplex, bigger than I thought our paygrade could handle, but for the sake of Bryson's needs, this home is very accomodating. We're still in the midst of unpacking again for the 5th time in 3 years. Now that's a breakneck pace!! We all took sick a few times during our odd-i-see due to the stress of gypsy life, but now things are working their way back to normalization, but for those of you who know our circumstances well enough can say confidently that we're still pretty far from that.
And so the journey for the Naults turns another chapter......

The unconquerable Mr. BEAN

2008-08-26T10:41:00.005-05:00

Well every one, this is a new and exciting update from BEAN's ever-lovin momma. We are still in the heat of summer down in the hell pit of Texas. The A/C has been broken in the car for a few months now, so we've been mostly grounded to the confines of our chilly house for the entire season. Not that I'm complaining, the traffic here is more bumper cars than bumper to bumper. I still have a ways to go on car payments but the wear on the car says its more upside down than what its worth. I know some of you are devote readers who check in here to know the buzz on us than to give a call. I haven't always got a moment to sit and illustrate the life and times of the Naults, because Mr. BEAN, my boss, hasn't the patience to understand that I need time for myself. I have the time right now because he is enjoying his morning nap. I love it when you call me, I can juggle a phone, a child, and a few chores at the same time, but sitting isn't a luxury I have for long.

But in other developing stories I have to report, Bryson calls me by my name now. He knows his momma can come quicker when she is properly addressed, and in the right tone!! He is practicing his Dad words but for a kid who's had so many oral issues that's a tough one to say. We get the idea of when he's saying dadda by the hint of playful growl he babbles when he wants dad to scoop him up and throw him around. My momma word comes with a hint of whine and longing for a cuddle buddy. He is also sitting well on his own and can do a somersault all by himself. We think it's too hard right now for his mind to coordinate crawling, but with all his strength, will, and stubbornness, it's just a matter of time and for it to be his idea. We've been working with his therapists for a whole year to get him to crawl, but Bryson's in charge of what he will and will not do. He's a lot like his Dad in that regard, when he's good and ready he has the skills to do what he wants, but it can be frustrating waiting for that time to come.

For those of you that remember that glorious night at the pier, Our 3rd wedding anniversary is coming up next Wednesday on the 3rd. It would have been nice to make something special of the day, but it feels like 30 years instead of 3rd. We (Travis and I) are likely going to stay in and comfort Bean because on the 2nd he will have some major dental work done.

Bryson has an early AM appointment to be sedated for dental cleaning X-rays and fillings for a lot of cavities and even possibly a tooth extraction. Unfortunately, his teeth are really bad and the problems are exacerbated by lack of pediatric dentists at the military hospital, being directed every which way to dentists who refer us to other DDS's, and well we've spoiled the sugar baby rotten. The fact that his has a slight refluxing issue may also be a factor as well as maybe his teeth aren't as strong as they could be if he didn't make crazy weird cells with the Trisomy 13 code in every single particle.

It's so hard to judge what's normal stuff and what Trisomy 13 has got to do with what happens with our little guy. I cant bring myself to look at him as a kid with a syndrome, he just feels so normal to me. I wouldn't have a clue what being with a "normal" child might be like, because I don't have any experience with "normal". I never really have...... Bryson is just the way he should be and maybe even better than that, he has exceeded every expectation Travis and I were able to imagine for him, with the trisomy diagnosis. We couldn't have guessed any part of our lives would have taken us where we are today or where we'll be even tomorrow. He's got his moments of genius, where Travis and I are both stunned at how capable he is, given his abilities and setbacks. Some days we swear he's made a bunch of suckers of us when he shows he's outsmarted and manipulated us again for giving into his master plan for familial domination. It's hard to say no to a kid that makes you so sure you ought to say yes we can and will make this family life great. As adorable and cute as he is right now, it's too hard to resist his charms!!!

No Hands Guitar Player

2008-07-17T17:01:00.001-05:00

People can be so completly amazing when you think there isnt much they are able to do, they can do almost anything better than you!!

I am the Child

2008-07-01T19:27:00.002-05:00

Author unknown

I am the child who cannot talk.

You often pity me: O see it in your eyes.
You wonder how much I am aware of .... I see that as well.
I am aware of much.... whether you are happy or sad or fearful, patient or impatient, full of love and desire, or are just doing your duty by me.
I marvel at your frustration, knowing mine to be far greater for I cannot express myself nor my needs as you do.
You cannot conceive my isolation, so complete it is at times.
I do not gift you with clever conversation, cute remarks to be laughed over and repeated,
I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world around me.
I do not give you rewards as defined by the world's standards.... great strides in developments that you can credit yourself;
I do not give you understanding as you know it,
What I give you is so much more valuable..... I give you instead opportunities.
Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities;
the opportunity to explore your spirit more deeply than you imagined possible.
I drive you further than you would ever go on your own, working harder, seeking answers to your many questions, creating questions with no answers.
I am the child who cannot talk.

I am the child who cannot walk.
The world sometimes seems to pass me by.
You see the longing in my eyes to get out of this chair, to run and play like other children.
There is much you take for granted.
I want the toys on the shelf, I need to go to the bathroom, Oh I've dropped my spoon again.

I am dependent on you in these ways.
My gift to you is to make you aware of your fortune our healthy back and legs, your ability to do for yourself.
Sometimes people appear not to notice me, I always notice them.
I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness.
I am the child who cannot walk.

I am the child who is mentally impaired.
I don't learn as easily, if you judge me by the world's measuring stick.
What I do know is the infinite joy in the simple things.
I am not burdened as you are with the strife's and conflicts of a more complicated life.
My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love.
I am the child who is mentally impaired.

I am the disabled child.
I am your teacher. if you allow me, I will teach you what is really important in life.
I will give you and teach unconditional love.
I gift you with my innocent trust, my dependency upon you, I teach you of respect for others and their uniqueness.

I teach you about how very precious this life is and about not taking things for granted.
I teach you about forgetting your own needs and desires and dreams.
I teach you about giving.
Most of all I teach you hope and faith.
I am the disabled child.

Happy Second Birthday Bryson!

2008-06-18T16:57:00.006-05:00

Bryson celebrated his Second Birthday with family & friends in attendance.

Harriet McBryde Johnson

2008-06-05T13:08:00.006-05:00

Harriet McBryde Johnson, a local attorney and Civil Rights Activist on the rights of the Disabled died at the age of 50, yesterday here in Charleston. It is a very sad day for the people she represented and for many millions she hoped to bring awareness to the issues confronting the disabled. She was a champion for the ADA and equal access to healthcare. She debated Peter Singer, Professor of Bioethics at Princeton University. Singer professes to his young students (often first year medical students) that babies born with disabilities should be euthanized at birth because they will make no contribution to society. Ms. McBryde Johnson you see, was born with a congenital neuromuscular disease. Her thoughts on the Terri Schiavo case were that Terri was not at the end of her life and was not dependent on life support, no ventilators, etc. She (Terri) was indeed disabled in a persistant vegetative state was only tube fed. A husband to someone that is not disabled would not be allowed to withdraw tube feeding and hydration, so why was Mr. Schiavo's request carried out? Simply based on something Terri said years and years before? Terri had no written advance directive and she survived with loving family at her side for 15 years! http://www.slate.com/id/2115208/

Ms. Johnson had a disdain for the pity-based tactics used by the annual MDA Telethons, which I do too! You may actually raise more funds when you show the world the wonderful accomplishments people with disabilities can make. Like those of Harriet McBryde Johnson. Most of all, the lesson we can all learn from her is that we "typical" people, need a little more humility and humanity.

Harriet was also an author and has written: "Accidents of Nature", "Too Late to Die Young: Nearly True Tales from a Life", "Unspeakable Conversations" (http://community-2.webtv.net/@HH!80!A2!2134BF518044/stigmanet/HarrietMcByrde/)

RIP Harriet

Second Birthday!

2008-05-25T11:52:00.002-05:00

Bryson will be celebrating his second Birthday on June 9th. Mark & I (Grandma & Grandpa) will be going to San Antonio for this big day. I am so looking forward to seeing him again. I will post more with photos later.

Update on Bryson

2008-05-25T11:42:00.002-05:00

Bryson gave us quite a scare on May 14th. He was eating and aspirated some food and stopped breathing and his heart had stopped. Travis did the Heimlich on him to remove the food substances from his airways and did CPR. He was not responsive for a couple of minutes (must have seemed like an eternity) he finally came back around, breathing and heartbeat restored. He is fine now no apparent damage and is back to his same self again. We are all breathing a little easier, however, this just goes to show how delicate Bryson's situation can be.

Bryson comes to South Carolina

2008-04-13T14:02:00.003-05:00

Bryson & Dana came to South Carolina for a visit. This time of year our hometown has it's Azalea Festival. The festival draws 200,000, but also in the same weekend is Charleston's annual Cooper River Bridge Run, a 10K race and walk which this year had 37,000+ participants. We also went to the Cajun Festival in James Island which is great fun with Zydeco Music and great Cajun food. We had a lot of fun and Dana had a chance to catch up with some friends.

I was really sad to take them to the airport to return to San Antonio, but that's where they live for now and I'll be seeing them for Bryson's Second Birthday celebration in June. I'm looking forward to seeing how much he will have changed since this month.

Ironman brings awarenes to Trisomy 13/18

2008-02-24T15:11:00.010-05:00

Michael Hennessey of San Antonio TX is going the extra mile to bring awareness to Trisomy 13 & 13. In fact there will be many many miles of running, biking and swimming involved. Micheal competes in Ironman Triathlons and plans to compete in 18 all over the globe during 2008. In each city where he competes, he plans to bring awareness to these rare chromosomal disorders. Please visit his blog at http://www.ironmanforkids.com/ Please donate to his cause as well. We need to get the word out about T13 & T18.

In Loving Memory...

2008-02-19T20:28:00.003-05:00

On February 12th at 8:05 a.m. my Mother, Doris McDowell, Bryson's Great Grandmother died at the age of 88. She was a wonderful mother. And as a great Gramma, she loved Bryson with all her heart. Rest in Peace Mom...I love you always and forever.

Another Surgery Scheduled

2008-01-12T14:15:00.001-05:00

Bryson is scheduled for surgery on February 7th. This time the surgery will be to repair his cleft palate and remove cataracts from his eye(s). I will again be traveling to San Antonio to be with the family as support. We are all hopeful that this surgery will allow two things. First the palate repair will help with feeding issues, speech, breathing, etc. The removal of the cataracts will hopefully allow him to have more vision than he currently has. This will be a Godsend as you can imagine to be able to see, will mean to be able to better learn and develop. I am especially excited over this aspect. My parents both had surgery to remove cataracts and they both said it was a miracle how well they could both see after the surgery. My father said he was able to see colors, literally for the first time in his life and didn't realize how blue the sky was. It brought tears to my eyes to hear that. Now we can't tease him about colorblindness. That's a good thing!

On another note, we have just received word that Travis, Bryson's daddy will be deployed on March 1st. It is looking like the Army will be sending him back to Afghanistan, in Kabul. The Army is in need of medics to relieve those that have been over there for a long time. It is my deepest hope that he will be in the Hospital on post rather than out in the field as he was back in 2006, just before Bryson was born.

When Bryson was born and the diagnosis of Trisomy 13 was received, it was rather bleak and thought that he wouldn't survive as most with such a diagnosis. As a result, Travis did not have to return to Afghanistan. However, since then, Bryson has been really doing well, is healthy and has these surgeries to repair the things that Trisomy 13 brought him. I felt very heavy hearted to learn of this news, but Travis, is an excellent medic and a valued asset to the U.S. Army and this is what he was trained and prepared to do. We, also as a military family understand this and give him our full support and prayers. We love you Travis!

I am so proud of Dana and Travis and how they have handled every thing that life has sent their way. These are people that the media should focus on. People who make the difference in the lives of those they encounter. Why don't they have stories on the news about them instead of those icons Hollywood and the music industry produces, that set their paths to self destruction and chaos and don't really do anything for anyone else. They are all so self absorbed. Travis is a great combat medic who has saved peoples lives! He is the Greatest Daddy to Bryson. Dana is a photographer, taking babies' first pictures in the hospitals in San Antonio. She recently did bereavement portraits for a family of an infant that was stillborn. She gives her heart to her work, you can see it in her pictures. She shares in the families' joys and in their grief. She lavishes love upon Bryson. She is my best friend and a daughter I am most proud of. Dana, if I could have had 10 of you to bring into this world to make it a better place, I would have! (But the labor and delivery would have to be easier!)

Happy 2008

2008-01-01T12:46:00.002-05:00

I am so thankful for our blessings in 2007. We look to 2008 as being a year of many firsts for Bryson. He is healthy and keeps changing into this playful, funny fireball of energy. To those who thought he would die inside a week, I say, "See?, God has a plan for this little boy." He is here to teach us all not to expect what is the norm. Expect the unexpected!

To those of the medical community and those who write your medical journals, may your minds be kept open to give your patients and their families the benefit of any doubt about what Trisomy 13 is and ALL of it's possibilies. Be sure that when you inform a family of the diagnosis prenatally or as in our case after birth, that you also tell them the truth about the survivors. Tell them that there are many of them and that with the proper care and treatment which should be made available to them, the possibilities are endless!

We have so much yet to learn about the wide spectrum of Trisomy 13. Why are some children mildly effected and some have the worst possible case scenarios? In any case, children with Trisomy 13, or any rare Chromosomal Disorder should be not be judged by the statistics, but as the individual with different, yet specific needs to be addressed.

Initially, we were told so many things about Bryson. That he was a "textbook case", and we have come to find that many of those findings were just not true. Don't let the textbook lure you into believing all that's been written to be true about Trisomy 13. Bryson is writing his own version daily!

Christmas Montage

2007-12-27T22:49:00.000-05:00

Bryson's Christmas

Merry Christmas!

2007-12-26T18:18:00.000-05:00

Send me to Grandma in South Carolina!

Postage is how much?

Bryson is now a little more than 18 months old and is doing very well. He continues to grow and develop at his own pace. He had a very Merry Christmas with Mommy & Daddy in San Antonio. He enjoyed opening his gifts but then, playing with the boxes, bags and wrapping paper proved to be so much more fun!

Happy 1 & 1/2 Un-Birthday

2007-12-09T23:30:00.000-05:00

let's grow old together! Baby love is so sweet, it'll make your dentures ache. I just want to play and learn lots of wonderful things!

Bryson's first plane ride

2007-11-19T20:13:00.001-05:00

Bryson at the airport-first flight

Here's Bryson with Great Grandpa Bob McDowell

Bryson with Great Grandma Ann Maloney

A moment of peace with Mommy

Bryson & Dana flew up from San Antonio and me from Charleston to Indiana, our hoosier homeland to see our family and celebrate an early Thanksgiving. The leaves were in their full technicolor beauty which she and I miss about living in the South. There really isn't a "fall". It just goes from hot to cold with no real transition in between. Dana fixed a wonderful meal for Sunday Dinner of Rock Cornish Game Hens with wild rice stuffing with cranberries and almonds and Granny Smith apples. Yum!

It was nice to see my folks as always as I've been traveling so much to see Bryson since his birth. He is now 17 months 10 days and doing great. First thing he did when he got to his Great Grandparents' home was to crawl! We've been waiting for like next to forever for him to do it. He just wasn't in front of the right people I guess! Bryson loves his Great Grandma and Great Grandpa. He was keeping her amused by his antics and he loves to be held by him.

Bryson also got to meet his other Great Grandparents for the first time. (on his Grandpa Mark's side of the family) They also live in Indiana, but spend winters in Arizona.

Spreading the word

2007-10-02T18:24:00.001-05:00

http://specialchildren.about.com/od/inspirationalvideos/youtube/tri13a.htm

I'm always looking for ways to link up this blog to other websites that feature stories of inspiration and information on children with Trisomy 13.

If anyone who has visited here knows of any websites that I may place a link there to bring them to this blog, please e-mail me or leave a comment on the blog. I also like to place a corresponding link in my weblog to those sites; so that when a parent-to-be, that has a newly diagnosed child with Trisomy 13 visits here; they can follow one link to another and learn as much as they can.

When we found out at birth that Bryson had Trisomy 13, it took forever and ever to even find anything written about it. (as well as finding anything up to date!) All I could basically find were things on how bad it was and volumes of material on the mortality rates.

I want to shed light on it that it isn't necessarily a death sentence for a child as many uninformed perinatalogists and doctors may think. There are many survivors! When I listed Bryson on the living with trisomy 13 website, there were only 33 children listed as survivors. Go there now and you will see that there are now 76 children!

Have hope, have heart and stand up for the health care your child deserves and learn as much as you can. Your knowledge is power!

http://www.livingwithtrisomy13.org
http://rarediseases.about.com/od/rarediseasesp/a/patau05.htm
http://healthresources.caremark.com/topic/topic100587269
http://www.trisomy.org/index.php

More pics

2007-09-26T22:38:00.001-05:00

Lip Repair

2007-09-25T12:17:00.000-05:00

On September 19th, Bryson had surgery to repair his cleft lip. At the same time, the Opthalmologist did ultrasound on his eyes and the jury is still out as far as the findings from that test. He also had a hearing test while under sedation and we will learn more on that as well. The repair to the lip was a success and he really looks different and I think that there will be more positives to come as he continues to heal. Unfortunately, he bumped the lip area on a part of his "Jumperoo" chair and it started bleeding. They used surgical glue to help the skin from the two sections of the outer upper lip to heal without scaring that often comes when using sutures. They did however have to use sutures on the inner part of the lip inside the mouth. It also appears that they realigned the septum of the nose so that it would be more symetrical. Like I said, he has a different profile and a different smile (even though it hurts a little to smile) he keeps trying. He has been a brave little boy and I admire his spunk and spirit.

He has changed alot since I was here in San Antonio back in June for his first birthday. He has changed a lot since then. He is so much more active (wiggly) and on the verge of crawling any day now. He is very strong willed and is making strides everyday. We are so very proud of him.

New Pictures from Auntie Manda

2007-09-14T19:38:00.000-05:00

The Family went to Guinness World Records Museum.

Pictured right to left: Conrad, Amanda, David, Travis, Dana & Bryson in stroller

Dana & Bryson make an "appearance" on the Oprah Show.

Two amazing works of art.

The Nault Family

Conrad and his two nephews Bryson & David

Amanda and David

Here's my favorite: Kissin' Cousins

Surgery Scheduled

2007-09-04T19:52:00.000-05:00

Bryson is scheduled for his lip repair on September 19th. At the same time, there will be an ultrasound performed on his eyes to see if cataract removal will help him to see. I'm really nervous about the surgery, because he'll look different, and I'll miss seeing him as he is, the way God made him. But, you do have to look at the many benefits to having the lip repaired and that hopefully, he'll be able to eat better and breathe better through his nose. He may make different sounds than what he is doing now. He's recently picked up a new sound. It kind of sounds like a cricket chirping. We have no idea how he makes this sound, but it's funny to hear it.

I will be flying to San Antonio to be with him and Mommy & Daddy for moral support and to catch glimpse of his new face.

Please keep us in your thoughts and prayers as surgery is always kind of nerve wracking.

What's going on?

2007-08-29T17:20:00.000-05:00

It's been a while since I've posted to this blog, and I apologize to those who want to stay informed about Bryson. In a nutshell, he's been doing well. He is on the verge of crawling.

Soon they will be consulting with the ENT that did the surgery for the tubes in his ears. He, along with a Cleft Team will be there to perform the surgery to repair Bryson's cleft lip. (the palate will come later) For more information on Cleft Lip and Palate repair visit:

http://www.plasticsurgery.org/patients_consumers/procedures/CleftLipPalate.cfm

Bryson had an Opthalmology appointment this week and they will perform an ultrsound on his eyes while under anesthesia for the cleft lip surgery to see if the cataract on one of his eyes can be removed to improve his vision. Pediatric cataract surgery differs from adult surgery which can be done outpatient and visual accuity improves dramatically. With Bryson's cataract being congenital, (meaning at birth) along with Micropthalmia,finding the proper solution to cataract removal and possible IOL (Intraocular Lens) implant or other may improve his chances to have some seeing capability.

I am planning to fly to San Antonio when Bryson has the surgery so I can be there to help where needed and to see baby's new "makeover". Folks this is as real as a reality show can get. But you don't see the networks clammering to see what the Naults live everyday. As always, please keep them in your thoughts and prayers as none of this is easy.

Surgery went well

2007-07-24T17:49:00.001-05:00

Bryson had surgery on July 19th to place tubes in his ears and to cut the lingual frenulum. That is that little ligament under the tongue that allows your tongue to move freely. His was tight...thus tongue tied. Even though he had not had any ear infections, the pressure of fluid behind the eardrum may have caused a slight hearing loss. It is difficult to tell at this point how much, but there will likely be further testing. The surgery on the tongue is a quick little clip and then it is cauterized to stop any bleeding. This will help him with feeding issues and later with speech. He did very well and was very brave. Thank you for those of you who keep him in your prayers. He is a little trooper and is happy and healthy.

Tumbling Tumbleweed

2007-07-02T22:52:00.000-05:00

Make video montages at www.OneTrueMedia.com

Granna Loves Bryson

2007-06-30T22:07:00.001-05:00

Make photo slide shows at www.OneTrueMedia.com

Bryson's 1st Birthday Bash & Barbeque

2007-06-13T19:30:00.000-05:00

Bryson and family and friends from all over celebrated his first birthday. We had around 25 people stop by to enjoy the celebration of his first miraculous year of life. Family traveled from as far as California, South Texas and South Carolina. Many friends from the military community, friends from respite care and other well wishers dropped by to enjoy barbequed chicken and burgers and way too much food! Bryson had a special banana cake baked by his great Aunt Eva(Tia Eva)from McAllen, Texas. He received many special toys, clothes, CDs, a rocking horse from Mommy & Daddy. It was a busy but very fun day for all.

Upcoming FIRST Birthday!

2007-05-30T20:36:00.000-05:00

I'm so excited! Grandpa Mark and I will be flying to San Antonio next week for Bryson's first birthday. It has been a very fast and remarkable year. Bryson is doing very well. He is healthy and happy although he could sleep more according to his Mommy & Daddy. We are looking forward to seeing him and Dana and Travis and getting all caught up to date. Grandpa Mark hasn't seen Bryson since July of last year, so I'm sure he'll see how much he has grown and changed. I am compulsive and have to see BEAN more often. I should be getting some frequent flyer miles by now. In fact, I've flown around the country more this past year than any other time in my life. (I used to be quite afraid of flying but now, it's only the seats that bother me. They can make something that weighs tons fly above the clouds, yet they can't make a seat feel like it's got some cushion in it? Oh yeah....I guess if it had more fluff, you couldn't use it as a flotation device. Well, I've got plenty of fluff to be a flotation device.)

Anyway, we're looking forward to a very happy birthday for Bryson. I can't wait to see him and plant Gramma kisses all over him.

Happy Mother's Day Dana-A tribute to a new Mom

2007-05-13T19:45:00.000-05:00

This is Dana's first Mother's Day and I just want her and the world to know that I think you are a wonderful Mommy to my grandson Bryson. You put an enormous amount of love and care each and every day sacrificing so much for the sake of your baby boy Bryson. I know it has been a whirlwind of a year and this time last year, we had no idea what motherhood was going to be like for you. When we found Bryson was diagnosed with Trisomy 13 after he was born, it was like a huge crushing blow to the chest because the doctors did not give us hope that he would survive. But because of the love and nurturing and care that you give Bryson daily, he is a survivor. I admire you and the beautiful woman you are. You have more strength of character than so many others. I love you more and more every day. As your mother, I am profoundly proud of you. I wish others knew your devotion and compassion for the ones you love, but hopefully they will know if they read this tribute to you my lovely daughter. I love you...your Mom. Happy Mother's Day

Up all Night

2007-04-29T00:03:00.000-05:00

It's yet another sleepless night at the Nault household for one weary mother. Bryson just can't stay asleep, and nothing, no matter how hard I try will send my little darling to sleep a whole night through. I know I am novice to the entire mothering shtick, but surely by now some sleep should be awarded me. It's so hard to gage at times what ought to be typical baby behavior and that what distinguishes trisomy babies from all others. I want to believe that this is normal and that it's not as tiring as it gets but that other mothers are dealing with the same dilemmas. I dont feel like there's much to bond over with other moms because I know they just feel sorry for me and thank god for their own lot in life. I guess that's why I have such a hard time imagining meeting moms with other trisomy kids because I don't want to be like them either. Not that I don't appreciate the struggles that they've endured, but I just don't see my self as the proud owner of an imperfect child. I am proud of my son, I think maybe by comparison he's better than other trisomy babies, but I don't want to know what it's like for those other little boys and girls because it's a disheartening experience to have to share. And I don't want to judge because I know that I have been judged, and I just don't feel like I know where to fit in. Not that anything would change with the way that we care for our son, but just to ease our minds that we can take comfort in things being truly well. You know we went from not having the solice of taking a single moment with Bryson for granted to dreaming the possiblities of his future all over again. Granted it's not the sort of future that seems to really lead anywhere.... but to at least a destination that may allow for Bryson's potential to progress and develop as much as it can. Sometimes the prospects of the future appear so vague and unrealistic, and then the reality of what is, is eerily exposed day by day playing out a scenario that defeats positive thinking. Folks, it's not even the nitty gritty just yet, so today may not have been the most stellar, I might just need to sleep, but tomorrow my little Bean might just start to crawl, say Dada and make the world seem right on track again. Travis and I put forth so much love and energy and devotion to give Bryson a happy little world to live in. The little rewards that most other parents receive in such quick succession that ables them to watch their bundle of joy turn into toddlers then kids and beyond... and we have to work tirelessly for a simple glimmer of that moment, well sometimes it doesnt come when we want them to. But we never give up and never will so long as Bean keeps receiving our love and encouragement.

Happy Easter!

2007-04-08T18:43:00.000-05:00

Grandma's Quilt

2007-03-29T18:41:00.001-05:00

I had been working on a quilt since November of 2005, at the beginning of Dana's pregnancy. When we went out shopping for a nursery, we looked at all the crib quilts and bedding offered. We thought many of them were "visually overstimulating". Some were so busy and had such a plethora of color and animals or vehicles with human qualities that we said "Whoa!...it's no wonder so many children are diagnosed with ADD and ADHD!"

It's rather ironic then, that Bryson was born with very limited vision. We perhaps should have bought the brightest, boldest, outlandishest (is there such a word?)...ahem most outlandish nursery furniture and bedding. Oh yeah, we still have to look at the stuff and not go crazy.

I finally finished my labor of love in the form of a quilt when Bryson turned 9 months old. We came up with a theme of Woodland Creatures as Dana and Travis were living in rural Northern New York and they are outdoor type people and love nature.

I hand embroidered 5 squares as accents and used fabrics in natural, earth and green tones. The last irony is that of all the handiwork involved, the tag was machine made in China saying: "Handmade by Grandma".

src="http://1.bp.blogspot.com/_ysc_Dd6lpcc/RgxlU-B_MEI/AAAAAAAAAB0/AakyxBdQIVw/s320/3+Bears.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5047520693298606146" />

Physical Therapy

2007-03-27T21:46:00.000-05:00

Children with Trisomies have poor muscle tone and are developmentally delayed in crawling, sitting up, standing and eventually walking. Bryson has physical therapy on a weekly basis. Shana has been working well with him so that he can build muscle tone and teaching him to roll over. Now he's now doing it all the time!

Photo and video editing at onetruemedia.com

Trip to San Antonio

2007-03-26T20:40:00.000-05:00

I flew to San Antonio on the 6th of March and stayed with Dana & Travis for 2 weeks. It was so nice to see them and Bryson as I have missed them all so much. Their house on post at Ft. Sam Houston is quite a nice size! The base as a whole is very nice. They have settled in and have gotten to know the area pretty well considering they've only been there a couple of months.

It was so nice to catch up with them, see how they were doing and to give them some respite. And of course it gave me a chance to spoil my grandson Bryson. They took the time to go out, see a movie at the Imax, go out on a date for dinner somewhere nice on the Riverwalk. A couple needs that and they just haven't been afforded that opportunity.

San Antonio is quite large! I didn't realize that it's the 7th largest city in the US. That may not seem like much, but it's growth rate is phenominal. It has gone from the 10th largest city to the 7th in just a couple of years!

Warm Welcome

I took a lot of pictures and movies of Bryson and his progress thus far. He has come a long way and is learning new things everyday. But the shocking thing was right when I first got to their house, I was given a big "warm welcome" from Bryson.

Pictured above left to right, Kickin' with some juice; Bryson tries walking for Daddy; A Long Day Shopping.

One night, Bryson was really quiet (a very rare thing) and so we checked on him and found him passed out drunk on his formula, leg draped over the side of the crib. He's such a funny little guy. He laughs and smiles and loves bright lights and the sun and a good breeze. Aren't we all a bit like that? He is so active these days, he's in constant motion! He loves to gurgle. One day shopping, Bryson was gurgling rather loudly and continuously in a store that everyone wanted to see the happy baby. One woman dropped all the items in her hands and begged to hold him. Who can resist? He's a ladies man!

2007-02-26T14:13:00.002-05:00

Surprise, Surprise!!! Mom actually has a moment to make a post on the blog!!! So let me just begin by saying my mom, Gramma Dori gives such wonderful effort to build up this blog and keep everyone pretty well informed, but i'm really hoping to put forth more effort on our parts to give y'all a first hand account of whats goin on.
Well, the Nault's know a thing or two about getting while the gettin is good, and boy are we pretty glad we evacuated northern New York just in time. We really needed to start out on a good foot since last year was so hard on us. But reflecting back, it's very simply amazing how well we stood up to all the hard knocks we got. Time after time, we got back on our feet and kept moving on. We are now in a place that is so promising and bright that we can finally enjoy looking forward to the future. Our BEAN is nearly 9 months old, is making such great gains developmentally, and has become the source of familial happiness. We've got a great team of specialist doctors and therapists who are all impressed with his progress and are also anxious to watch him flourish and grow. You know, he just doesnt know he's got issues, he demands to be challenged like a growing smart little boy. He's so strong willed like us and does the best that he knows how. BEAN is certainly the inspiration for beating the odds and living life without regret. For now, it all feels like a normal life. Travis and I are so gratefull that Bryson chose us to be his parents, because of him we love each other more deeply and appreciate the quality of our own existance. I wish that for anyone who comes into our lives to take that message to heart and experience that fulfillment for themselves.

Look at me now!

2007-02-11T17:54:00.000-05:00

Photo and video editing at onetruemedia.com

Hope you enjoy this latest photo montage. Bryson is now 8 months old.

Again, Scary times

2007-02-10T15:29:00.000-05:00

Yesterday, Bryson had a very bad apnea episode. What usually happens is that it starts with crying. He'll get very upset, to the point of being inconsolable, then he gets this painful expression on his face and stops breathing. Sometimes all it takes to get him breathing again is a little stimulation, such as stroke on his feet, talking to him, puffing some air in his face, but yesterday, nothing was working. Finally after what must have felt like an eternity, he took a big breath and started crying only to pass out of consciousness. He didn't come back to consciousness for a while either. This was very scary for Dana and she was very upset.

No one other than a Trisomy family can understand that these episodes, short or long in length can frighten even the most bravest of souls. It shakes you to your core. You never know if this is the moment that your baby is going to leave you or if, with God's will that this precious little one is allowed to stay. I pray every day that God will give us many good days, that I will be able to see my Grandson again. I miss him so much.

We want him to grow, develop and be happy. I thank God for every day He gives us. Please keep Bryson, Dana & Travis in your prayers.

Settling in

2007-01-25T18:57:00.000-05:00

Travis, Dana & Bryson have all settled in their new home on post at Ft. Sam Houston. They have so much space. They have met a few of the neighbors and all seem really nice.

Bryson had his first evaluation with Dr. Poulin. (his daughter Sofia also has Trisomy 13) Bryson now weighs 15 pounds and is 24 inches tall. He is in the 50% percentile which is awesome so we're on track there with growth.

He loves his new walker. The house has hardwood floors so a walker keeps him occupied. Now if we can get him to go forward. He loves to stand. His legs seem very strong. So hopefully he will have the capability to walk that many other children with Trisomy 13 have difficulty with and don't really start to walk until they are around 2-3 years old.

Physically, Bryson is doing quite well! The next appointment will be with a Gastroenterologist to see how bad he is afflicted with reflux. Seizures are less frequent so they have backed off the phenobarbitol. The less medication a person takes, the better. (that's my opinion anyway)

To date, there still have not been any surgeries, none planned for the moment and it's probably best to let him continue to grow and thrive in good health. Surgeries seem to set back these children by quite a bit from what I read on the Trimed listserv about other children with various forms of Trisomies.

The pictures are when they visited an old Texas Museum and had an old jail cell. Bryson looks like he's desperate to get out of jail.

We'll keep the lights on

2007-01-03T08:21:00.000-05:00

Is it Motel 6 or 8 where the guy says, "we'll keep the light on?" Anyways, the lights have been burning at Motel 8 somewhere in San Antonio. Bryson has gotten his sleep schedule all messed up. He's kept Mommy and Daddy up night after night. He's not sleeping much and when he does sleep is when Dana and Travis have to stay up.

Today is the first day to really try and accomplish some things since the holidays are now over. In another week, they will be handed the keys to their new home on post. Dana is really excited about San Antonio. She feels like finally, good things in their lives are coming together in a wonderful place. She is mesmerized by San Antonio, it's the first large city she's ever lived in. So much to do, so many places to shop, and for Travis, so many Best Buy stores. They found a great place to get sushi. (How anyone can like that stuff, I'll never understand. If I wanted raw fish and gummi rice, it would be easy enough to do at home. Yuck!)

San Antonio or Bust!

2006-12-30T16:57:00.000-05:00

The Nault's arrived in San Antonio Texas on Wednesday December 27th and right now living out of a Motel 8. They will be given the keys to a housing on Post on the 10th, the day that Travis has to report. They are getting familiar with the area by driving all around. Here's a picture of Bryson that I got for Christmas.

Yesterday, they met with another family, the Poulin's who live there in San Antonio that also have a Trisomy 13 child, Sofia. They are also a military family stationed there. Sofia will soon turn 3 in January. Sofia is a real cutie. She has such beautiful blue eyes and a sweet smile. This is Sofia's first visit with Santa with her big brother Johnny. Thanks to the Poulins for their hospitality.

Santa Baby

2006-12-30T16:50:00.000-05:00

While at Great Grandma and Grandpa McDowell's house, Dana & Travis found the Santa Doll that was always a decoration put up year after year. They dressed Bryson in his Santa Suit as this was his first Christmas. Who's the doll now?

In this Season of Giving...Be Touched by an Angel

2006-12-19T20:30:00.000-05:00

In this season of giving, please consider giving to a charitable organization that can help families of children with Trisomies or other rare chromosomal disorders. There are many charities out there that bring in a lot of funds for those diseases that are known to the general public.

Your support can help a family that has received a rare or negative diagnosis of a syndrome or disorder for their infant. Your generous donations will go to support families through networks established by other families that have been "Touched by an Angel" in their lives. Many parents of Trisomy children have heard all too many times either prenatally or postnatally, how their child's condition is "not compatible with life". The textbooks need to be re-written to reveal to the world that there is hope. The medical community has to be more cognisant of the fact that there are many survivors of these rare chromosomal disorders and that their care and compassion can allow these children equal access to the medical treatment they need.

In the first 6 weeks of Bryson's life, we met with and interviewed 9 Pediatricians and never found one to have anything more to say than what they found in out dated material or mortality rates from the internet. A strong alliance of families and those in medicine must be established so that one day "not compatible with life" will be a thing of the past. It has been my main focus to bring awareness of Trisomy 13 via this weblog and those of other Trisomy families and it is my hope that you will learn more and tell others that miracles do happen.

Please consider your gifts of love to any of the following:

http://www.trisomy.org/index.php
http://gregoryarritola.tripod.com/emmanuels_foundation.html
http://www.noahsneverendingrainbow.org/index.html
http://www.trisomykidsarespecial.com/buy_bracelets.php
http://www.childrensmiraclenetwork.org/index.php

On the Road

2006-12-19T18:29:00.000-05:00

Bryson, Dana & Travis hit the road for their move to San Antonio TX yesterday. They stopped off at Niagara Falls. They arrived there at night. The area was very well illuminated casting a beautiful glow and the mist shows thousands of rainbows.

They traveled on to Indiana where they are staying with my mother & father, Bryson's Great Grandparents. This will be their first meeting. It's also the first time they have met Travis. I only wish I could have been there to witness a coming together of the generations.

Upon arriving in Elkhart, Bryson's left eye was all bloodshot and it looked like there was even blood behind the iris and in the pupil. Since Trisomy 13 is the cause of many problems with the eyes, it's best to have things thoroughly checked out. Glaucoma, cateracts, micro-opthalmia, blindness, are all potential problems in infants with T13. The tear ducts can be sometimes be blocked, then sometimes in congenital glaucoma in infants, the trabecular meshwork can fail to drain with the fluid increasing the pressure within the eye. It is very important to be seen by an Opthamalogist immediately before any pressure causes permanent damage to the eye. Bryson is already blind, however, with such a problem, he could end up losing his eye if not properly treated. They went to Boling Eye Center in Elkhart where Dr. Richard Boling took a closer look to see what was going on. Aparently it was a broken blood vessel. He gave them some eyedrops and instructions on how to administer to him and to have a follow up visit with him after Christmas.

Spam No more!

2006-12-10T13:00:00.000-05:00

As the comments on this weblog are moderated by myself, I now have found it necessary to add "word verification" when someone wants to post a comment. This is a minor inconvenience to you, and your comments are still very welcome, but this was needed because I was getting a lot of automated spam for viagra, phentermine and inappropriate ads for websites daily in my e-mail as "Anonymous" posts to the blog. You are welcome to still be anonymous too, I didn't want it to get to the point of just deleting anything from Anonymous. Word verification has the commentator type in letters or numbers as they appear in a box, probably case sensitive. This prevents automated spam to be able to post comments (which I of course was not publishing). Thanks for your understanding.

"A Very Merry UnBirthday"

2006-12-06T20:12:00.000-05:00

This Saturday on the 9th, Bryson will be 6 months old. To celebrate the occasion and to thank the many professionals and volunteers involved in Bryson's care and treatment, the Naults will be hosting a very merry "UnBirthday" party for Bryson.

Texas Bound

2006-12-06T19:35:00.000-05:00

It's official!! Travis has received authorization to be stationed at Fort Sam Houston in San Antonio Texas. He and Dana are really excited about their upcoming move. The movers are due to come on the 14th to "pack out" the apartment and ship their belongings to Texas. Before they report, they plan to spend some time with family in Indiana. My parents, Great Grandma & Grandpa McDowell have never had the pleasure of meeting Travis and of course their great grandbaby Bryson. I really wish I could be there to enjoy it with them. Please keep them in your thoughts and prayers as they will have to travel over several days to San Antonio.

My husband and I just returned from Texas (Gulf Coast) last week and they really had some freaky weather. It dropped 30 degrees in a half hour! It went from 74 to 44 and the wind and rain came with a vengence. We were there visiting Mark's Father and Stepmom.

Extraordinary Child

2006-11-17T18:40:00.000-05:00

Definition:

1. beyond what is usual, ordinary, regular, or established
2. exceptional in character, amount, extent, degree, etc.; noteworthy; remarkable
—Synonyms 1. inordinate. 2. uncommon, singular, rare, phenomenal, special, signal.
—Antonyms 1, 2. common, usual.

All these things pretty much describe Bryson who has Trisomy 13. He came with so many "extras". He has an extra copy of the 13th chromosome in every cell in his body. He has extra pinkies on his hands which we like to call "dinkies". He even has an extra toe on his right foot. He has an extra middle name.

This week, Bryson had an appointment with a Pediatric Urologist and we found yet another "extra". He has a third kidney! We are really surprised by this. I've not heard this in other Trisomy 13 cases. In fact, I'm not sure I've heard of this outside of Trisomy 13 either. But I'm sure somewhere, it's happened.

He remains in good health. He now weighs 12 pounds, 13 ounces and is 5 months, 2 weeks.

He is EXTRAordinary!

Blogs of Merit

2006-11-09T20:58:00.000-05:00

I have spent the most part of this evening reading other people's blogs about their children with different developmental disabilities. It really warms my soul knowing that the children written about were delivered into the loving arms of a family that found out what the meaning of love is and quality of life. Quality of life cannot be measured by IQs or the ability to walk and talk. Quality of life can be measured in smiles, in reaching each child's unique milestones, in the amount of love that is poured upon them and those within that circle.

Please visit these blogs and see what love and richness in life and blessings are about.

http://realchoice.blogspot.com/2006/10/life-worth-living.html

http://renandmotorcycles.blogspot.com/2006/08/unforgettable.html

http://www.lifesite.net/ldn/2006/jul/06072006.html

http://moteguardian.blogspot.com/2006/02/quality-of-life-and-people-with.html

http://funfinns.blogspot.com/2006/10/kimber-is-pregnant.html

2006-11-09T19:38:00.000-05:00

Happy 5 month birthday Bryson!

Today is another milestone, another day to celebrate. We are so happy to rejoice every day you are with us.

Deep in the Heart of Texas

2006-11-05T18:33:00.000-05:00

The US Army has been very good to Travis and Dana while they have been stationed at Fort Drum, NY. They have been very helpful to them since they have been in the Exceptional Family Member Program (EFMP) and were going to move them into on base housing because of Bryson needing to be closer to medical care. However, they are still an hour and a half drive from the specialists that they need to see in Syracuse, NY. With winter weather fastly approaching and trips to Syracuse being more of a danger than a help a different plan has been hatched. This will hopefully be approved as all around; it will be better for the family. They are hoping to be reassigned to San Antonio Texas. There is where Travis went to school for his Combat Medic training. There he can continue his education in the field of medicine and the weather will be better as well as being close to many fantastic medical facilities for Bryson's sake. We do have family in Texas. Dana has grandparents in Rockport, and Aunts and Uncles in south Texas. It's really a long move 1860 miles and I suppose they'd have to do it over several days. The military will move their house.

Probable cause of seizures

2006-10-25T17:25:00.000-05:00

Bryson has been having small seizures for a few weeks now. In doing some research as to the cause or what type of seizures he was having, Dana & Travis had an EEG performed on Bryson in late September. I witnessed these seizures which are a short jolt that courses through his entire body. It usually occurs mostly during feedings, but not necessarily only then.

We didn't have the results back yet from the Doctor as to what was the cause of these seizures and I did some research on the Internet on seizures. I knew they weren't Grand Mal or even Petit Mal Seizures. The Mayo Clinic website offered information on many types of seizures. What I could best tell was that these were myoclonic seizures where an electrical surge is caused by a neurological disfunction. I checked into other types of seizures and found information on Epilepsy, Spina Bifida and Neural Tube Disorders. The article on Spina Bifida brought to mind another midline defect that Bryson has. It appears that he has a closed spinal defect which I found out may be Occulta Spina Dysraphism. He has what looks like a defect just off from his sacral spine angled from his natal cleft. He has a tuft of hair at the top of the natal cleft which is indicative of Occulta Spina Dysraphism. Sometimes this is accompanied by a tethered spine and unasymetrical development of the legs or feet. A county health nurse and Dana had found that one leg is one inch longer than the other.

Hopefully the OSD is not accompanied by the tethered spine as this requires surgeries to release the spine from its bindings. He has another appointment with Dr. Liptak on November 4th. Hopefully more will be learned then about the seizures and the spinal defect.

As Bryson continues to develop and grow, there are and will continue to be new findings, some promising, some daunting. Nevertheless, he is loved and cared for by his parents with all the love and joy in their hearts as he brings to us a message of love and courage.

Video Montage of Bryson

2006-10-16T20:57:00.003-05:00

Photo and video editing at onetruemedia.com

Milling and Mooing around in Northern New York

2006-10-12T19:57:00.000-05:00

There is a lot of beautiful country here in Northern New York. Today, we visited a Cider Mill in Burrville where just behind the mill was this wonderful waterfall.

Then we drove a few miles from there to the Maple Ridge Wind Farm and saw up close what the windmills look like. From the distance, they look large, but when you're next to one, they are humongous! There are about 140 windmills in the Maple Ridge Wind Farm and the power created from just one turbine produces enough energy to power about 500 homes. Each 1.65 megawatt turbine costs $2.3 million to build. They stand 320 feet tall or equal to the size of London's Big Ben. They are graceful yet kind of space age looking amongst the backdrop of old barns and farmhouses.

Speaking of those farms, many are dairy farms as this is cheese country! The New York Cheddar and cheese curds (my favorite) is plentiful around here.

Physical Therapy Session

2006-10-12T19:41:00.000-05:00

These pictures are of Bryson's Physical Therapy session. The Physical Therapist comes once a week for a half hour helping Bryson to stregthen his muscles. He fusses about it, but it's good for him and we learn what we need to do to improve his muscle tone.

Tattoo You

2006-10-12T10:28:00.000-05:00

We've been having a lot of fun with Bryson in the past week. Mommy wanted to try a face painting on Bryson while a day or so later, Travis had a lot of fun with temporary tattoos all over the baby. Don't worry, it all washes off.

Autumn in New York

2006-10-10T21:38:00.000-05:00

It has been really beautiful being here in New York during autumn. More reasons than the obvious beauty of the landscape with all the grand colors and that crisp air. There is a cornfield behind Dana & Travis' apartment where a lot of Canadian Geese have gathered for their migration south. There were literally thousands that took to the sky as I tried to get closer to get a good picture of them. The honking is quite loud, but it's an awesome sight to see so many in one place.

It has been especially nice being here with Dana, Travis and Bryson. Bryson has really changed a lot. He now weighs 12 pounds 7 ounces. He no longer needs to be fed through an oral GI tube. He feeds quite well from a bottle. It takes a while (about 45 minutes), but it makes things so much simpler. We've stayed around the house mostly, but it has been nice sharing this time together.

On Saturday, the 7th of October, Dana and I went to an Octoberfest in Alexandria Bay, at a Winery on the St. Lawrence Seaway. She has started her own business as a professional face painter and there were a few kids there that had their faces painted. It was fun setting up her booth with an easel sign, a bubble machine and table filled with her paints and a portfolio of her designs. It is so fun to see how the kid's personality would come out after they saw their face in the mirror. They were transformed to a puppy or kitty and sometimes something scary for Halloween. I had her paint my face as a beautiful monarch butterfly and walked around the grounds as a walking billboard for people to come to her booth. It was fun and the wine there is pretty good too!

Grandma's upcoming visit

2006-09-25T07:59:00.000-05:00

I am so excited! I am flying to New York next week to see Dana & Travis and of course Bryson. I haven't seen them since mid July and I miss them so much! Bryson has changed a lot since then. I can't wait to see him. I am going so that Dana & Travis can get a little respite. They need a break and a few more hours of sleep and a chance to go out and do something on their own. I also hope that perhaps we can drive to the Adirondack Forest Preserve and catch some of the beautiful flora and fauna as the fall colors should be peaking right now.

Bryson has an appointment at Samaritan Hospital in Watertown on Friday. They are supposed to do a brain scan and measure brain wave activity. This is an important appointment because we hope to find out what his mental development will be. Please keep us in your prayers. God has been listening and bringing us other blessings.

Thank you for your continued thoughts and prayers. It is comforting knowing that so many people care about this family.

I will update you all by this blog on the outcome of Friday's appointment. Stay tuned.

Precious Boy

2006-08-29T18:43:00.000-05:00

I know it's been a long time since I've updated the blog. I'll be honest with you, I've been in a funk. Straight out, that's what it is (or was). Every time I would come here to try to post something. I found that what I was writing was not much worth printing.

While there are still goings on in the Nault household with the immense care that it takes to be parents to Bryson, one cannot possibly comprehend how hard it is, day to day life. He is fed through an NG tube 2 ounces every two hours so there's not much rest for Dana & Travis, on top of constant watching and listening for his every breath because he still has the apnea episodes. They don't get any respite other than a volunteer dropping by to see them. Even then, they both can't leave. It's so hard being 962 miles away and wanting to be there for my family and wanting to watch Bryson grow and spend every precious moment I may have with him. It's heart wrenching for Dana and Travis, knowing that their son will not be able to read, to see the sky, to know what a bird looks like, to see a tree or a forest or a flower, to be able to know his Mommy's and Daddy's beautiful faces. Today, it was confirmed by an Opthamologist in Syracuse that Bryson is blind.

I prayed and prayed that somehow, he had some sight, even if it meant glasses on his sweet little baby face. But not so. I thought that he might see some light and shadows, but his eyes did not form properly. Trisomy 13 is such a puzzling thing and I keep asking why, why, why? Why does something so cruel have to have happened to Bryson, to his Mommy & Daddy who only wanted a happy and healthy baby.

They have started to spoon feed him a little bit to train his swallowing reflexes. A little tapioca brings a smile to his face. Just knowing that brings a smile to mine and makes my heart melt.

Bryson is 2 months, 20 days old.

Cardiology Appointment

2006-08-06T17:44:00.000-05:00

On Friday, August 4th, Bryson had an appointment in with a Cardiologist. The Cardiologist thought that Bryson's heart was strong considering the Trisomy 13 diagnosis. All this time, we were told that he had 2 holes in his heart, ASD and VSD (Atrial Septal and Ventricular Septal Defects), which a lot of Trisomy 13 children do have. But remember, Trisomy 13 is not a cookie cutter diagnosis.

What was found was that he has a heart valve that was abnormal. Normally a heart valve has three flaps called "leaflets". Bryson has two flaps instead of three. Your heart valves keep blood flowing in one direction through your heart, just like the one-way valves in your home's plumbing. They open to let blood flow through, and then close to prevent blood from flowing back the way it came. When a valve closes, flaps of tissue on the valve close tightly together to create a seal. This is better news because it was thought that if he had both ASD and VSD, the possibility of him being able to withstand surgery outside of an emergency, was not even to be considered.

As he continues to grow and change, with every appointment, we learn more and more about this little fellow. He really continues to amaze us.

Family Traditions

2006-08-02T20:26:00.000-05:00

The picture above is one that I took my last day in New York. It is a family tradition to have portraits as Madonna & Child. My Grandmother Stella McDowell started the tradition with my father and his brothers. My mother had portraits done with the next generation, myself, my brother and sister. I did it...And so it goes, Dana and Bryson. Some family traditions are treasured and true.

Update on Bryson

2006-08-02T20:00:00.000-05:00

Bryson continues to do well. He continues to put on a few ounces here and there. There haven't been any apnea episodes of late and for that we are very thankful. Somehow things got messed up with the insurance, Hospice and the medical equipment provider and they had to come and take away all the medical equipment and turn around and have another company deliver the same stuff. They got nearly everything they needed but the oxy-hood and pulse oxymeter that Dana fought so hard to get. Now she's fighting again, this time with another company. She contacted the Children's Miracle Network and they have been very nice to help purchase an air conditioner for the apartment and now they've arranged for her to pick up an oxy-hood from Samaritan Hospital. (I explained in an earlier post the advantage of an oxy-hood over the "oxygen tent".) Any way, it is sometimes difficult dealing with so many people that you rely on for the needs of a special needs child, very frustrating. Some days Dana says she spends the entire day on the phone trying to co-ordinate appointments, for Bryson and herself, hospice, volunteer visits and trips to the doctors. Dana and Travis have both been sick themselves this past week. Travis had a flu and Dana has sinusitis. They are probably very tired and worn down as life with Trisomy 13 is very exhausting. It's a 24/7 job and I wish I could be there to help. Please keep them all in your prayers for health and endurance.

Appointments in Syracuse

2006-07-21T16:13:00.000-05:00

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!

Breathing Problems

2006-07-17T19:39:00.000-05:00

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.

Introspect

2006-07-14T22:21:00.000-05:00

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

Home Again, Home Again

2006-07-13T16:18:00.000-05:00

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...

Today's a better day

2006-07-01T12:38:00.000-05:00

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

2006-07-01T08:07:00.000-05:00

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.

Very Scary Day

2006-06-30T01:02:00.000-05:00

Who could ever guess that something so sweet and tiny can have a problem so big and scary.

Today was a very very scary day. Bryson stopped breathing 8 times. His apnea problem has really come to a head and we are so thankful Travis is here for his son. He had to administer CPR to him a couple of times and rescue breathing the other times. Dana, Travis and I have been holding vigil all day and all night. Travis has gotten only a couple hours of shut eye in the last 24 hours and Dana can't remember when she slept last. It's now after 2:00 a.m. and I'm beginning to wonder if I could sleep after how rough the day has been for little Baby Boy Bryson. Besides, it's my shift to stand watch.

During these episodes, he will arch his back, open his eyes as much as he can, although he has micropthalmia, and hold his mouth open while holding his breath. He will turn purple and his lips blue. Dana coaxes him to breathe, I pray and Travis does what he does best, save lives. The U.S. Army has trained him well to work in the trenches. And believe me, this is as tough a battle as any conflict.

To top it off, the oxygen ran out and more was in the process of being delivered when another episode was happening. I don't think the delivery guy had really witnessed someone's dire need for the oxygen tanks he delivers and he looked a little tense. After I signed for the delivery, he said "God Bless the four of you" and booked it out of here.

Tomorrow Paula from Hospice will be coming by. I've not met her yet. Everyone from Kid's Path (a division of Hospice of Charleston) has been great. Amy has been one of our Nurses and Gretchen is our Social Worker. They have been extremely helpful, caring, kind and compassionate people. I admire what they do.

Mr. Cranky Pants & the Chunky Dance

2006-06-28T22:30:00.000-05:00

I'm writing in purple for a reason. Apparently Bryson has had some problems with feedings, gas, possibly colic and we call him "Mr. Cranky Pants" when he gets wound up and won't stop crying no matter how you try to console him. He cries so hard he'll turn purple. It can be really scary because he'll hold his breath and you have to blow a little in his face and he'll start breathing again.

Dana & Travis had an appointment with a a different doctor yesterday at the Naval Hospital and he knew little or nothing about Trisomy 13. The first thing he said was, "Here, I've done some research on the internet", as he handed them about an inch of printed pages about the Mortality Rates of infants with Trisomy 13. That's great...we know...we know, but what about now, he is with us and alive now! He's surpassed your stupid mortality statistics so far Dr. Uncompassionate!

Since there was a possibility that Bryson may be in pain when he has those episodes, it was suggested by the Hospice Nurse Amy that he was prescribed a very small amount of Morphine to calm him down. We've not used it because Tylenol seems to do the trick. Besides, Mr. Cranky Pants hasn't shown up lately so hopefully we'll not have the need to use the Morphine.

We have another nickname for Bryson: Jellybean. His initals are BEAN (Bryson Elliot Allen Nault) and because he's so chubby, sweet and juicy, hence; Jellybean.

Bryson responds really well to his Daddy and calms down just by the sound of his voice. Travis plays with Bryson and is having fun with his baby boy. He will hold Bryson and do the "Chunky Dance". Bryson doesn't seem to mind, he's a very compliant baby. He loves to move around and be touched, tickled, given regular kisses and raspberry kisses.

Dana & I, well, we talk and coo and just love looking at him because he is so adorable and with those chubby cheeks, he gets plenty of kisses from us. Dana loves the way he smells. Baby lotion, baby powder, baby's breath...it's intoxicating. As for me, I have to see him every day for my fix. It's like an addiction. I gotta have my fix of Bryson.

Living with Trisomy 13

2006-06-26T22:10:00.000-05:00

My previous post dealt with the clinicians and doctors take on Trisomy 13 or Patau's Syndrome. This link http://www.livingwithtrisomy13.org/index.htm (click on Photo Albums) deals with families that offer help, hope and remembrance of their own Trisomy Angels. Bryson has his own page. I have spent a lot of time at this website, learning all I can about what it's like to care for a Trisomy 13 diagnosed child. It appears that if you are a persistant, informed parent advocating for the best care possible and not accepting of the original thought that Trisomy 13 is not compatible with sustaining life, your child can get past the hurdles that life has given them.

What is Trisomy 13 or Patau's Syndrome?

2006-06-26T20:50:00.000-05:00

As many of you may already know, my Grandson, Dana & Travis' son Bryson was born with a very rare syndrome called Trisomy 13 or Patau's Syndrome. Many clinicians and doctors will no doubtedly say that the Syndrome is "not compatible with sustaining life" or the child will have a "failure to thrive." They tell you to take your baby home and love him and give him comfort and that there is nothing that they can do. They even prepare a DNR order for you.

Most babies with Trisomy 13 either are miscarried, or stillborn and only 1 in 10,000 resulting in a live birth. Bryson has already bucked those odds by being born at full term and at 9 pounds 3 ounces. I pray every day that he will continue to stump us and the doctors. I'm not saying life with Trisomy 13 is easy, it is not...it's a very hard road to travel. This leads to the question of Ethics. What is proportionate or disproportionate Healthcare with Trisomy 13?

http://www.ascensionhealth.org/ethics/public/issues/trisomy.asp

The following link had the most comprehensive description of Trisomy 13 and many of the problems children diagnosed with it are faced with. There are four forms of Trisomy 13, Full, Partial, Translocation and Mosaicism. Bryson has been diagnosed with Full Trisomy 13. To assure you, it is not genetic or hereditary, but a chromosomal disorder or a "fluke" of an extra chromosome 13 slipping in at conception from either the sperm or the egg; then further with each cell division during fetal development the extra chromosome 13 is in each and every cell. (Full) This sends out mixed up signals in the developing fetus where things are to go and how everything is formed.

http://healthresources.caremark.com/topic/topic100587269

Bryson has some scalp defects (cutis aplasia), small eyes (micropthalmia); a cataract on his right eye and a misformed iris in the left (Coloboma) he is likely partially or fully blind. He has cleft lip and cleft palate, calcification on a part of his brain, underdeveloped lungs, a small hole in his heart (ASD or Atrial Septal Defect); cysts on his kidneys and on his spleen; abnormal genitalia; undecended testes; six fingers on each hand (Polydactyly) and six toes on his right foot.

2006-06-25T20:38:00.000-05:00

Here's Bryson sleeping snug as a bug.
He's 2 weeks old