Precious Boy

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

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

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

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.