Bryson's Blog

Living with Trisomy 13

Wednesday, June 28, 2006

Mr. Cranky Pants & the Chunky Dance

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'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.


Anonymous Anonymous said...

Hi Ya'll :)

My name is Janina and I have a Trisomy 13 survivor who is almost 12 months old! I hear everything you are saying Dori and I am nodding my head.

I have researched and learned that this syndrome is not as rare as documented. Only 23-28% of parents who know they will have a Trisomy 13 or Trisomy 18 child choose to continue their pregnancy and the statistics only count LIVE births. 60% are said to be stillbirth. That said, it is clearer to see that the U.S. does not have less occurances (than other countries statistics) due to our "better" healthcare system, but we have less occurrances due to our freedom of choice.

In several countries around the world, these infants are euthanized. I have spoken to a few moms mourning their loss (in Canada and in Sweden). However, for children who do receive proper medical care to ensure they are fed and get Oxygen when needed, these children do survive with a better quality of life than "waiting for them to pass away". The oldest Trisomy 13 survivor I know of is 47 years old.

The hardest part of living with Trisomy 13 isn't the obvious uphill battles. It's the mourning and griveing over the loss of our (the parents) expectations for our childs future and our family. And we celebrate every milestone differently, with zeal.

I pray that littly Bryson lives a life FILLED with love and I will keep you and your family in our prayers - as I know some of the issues you may be facing and celebrating.

With Love, Peace and warm smiles,

Janina Arritola

1:45 AM  

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