Tuesday, January 30, 2007
Burke underwent his last BAER test yesterday...it was literally a "Bear" as he cried and cried for the first 30 minutes until he finally fell asleep. For those who don't know...Burke needs to sleep through the test so the audiologist can get accurate data....the testing usually takes 2 hrs! In order to do this, we had to sleep deprive him and allow him to get hungry so he'd take a nice long nap (he is typically a cat napper)...this is usually not a good idea for preemies and Burke is sensitive to being overtired and hungry! After he finally fell asleep, everything went well and we were able to get more information about his hearing. In a nutshell (there are many details of which are super complicated) his left ear has no measurable response to sound BUT his right ear has more responses to sound than we originally thought. With his "ears on" (hearing aids) he hears our voices and most speech sounds with the exception to the quieter sounds like "s" "th" "k" "f". He is really responsive to our voices and he is even starting to respond to his name...super exciting! :) He is constantly talking and his auditory-verbal therapist (Star) said she's never heard a baby (in her 30 yrs of working) who talks as much as Burke (we can't even get a word in without interrupting him)! Of course we never imagined Burke would have hearing loss on top of all his other medical battles but we are so hopefull that he will be able to learn how to listen & talk. We plan to teach him some sign language but will rely on verbal communication as primary. If you'd like to know a little bit more about the really great program that Burke is enrolled in to learn language, it's called Listen & Talk....http://www.listentalk.org
Friday, January 26, 2007
I recently bought a great book entitled "Changed by a Child; Companion Notes for Parents of a Child with a Disablity" authored by Barbara Gill. As you know, Burke has been diagnosed with severe to profound hearing loss...he is deaf and with that diagnosis comes membership to a whole new group of people...the disabled. I wanted to share some very touching and beautiful meditations and quotes from the book that resonated with me... I hope that it gives you a glimps of what goes on in the heart of a mom who has a baby with a disability and may change the way that you respond to those who do.
Sorrow ~ My pain felt like water penetrating into the sand, soundless, into the core of my being. -Anchee Min
When our baby was born we lost something that we were already in love with-our idea of what he should be. No baby could ever completely fulfill that idea or be that fantasy, but most babies approach or overlap our dream baby, because our dreams come from what we know, from our idea of the norm. A child with a disability was not in our picture at all, except maybe as an occasional fear. We who have a child with a disability lost not only our fantasy baby, but our reliance on having a "normal" baby.We feel this kind of loss deep within ourselves. It does heal, but it heals around the edges, leaving an open space in our heart. We grow around the scar and the hole in our heart, and they become part of our architecture, part of who we are. But when the wind blows a certain way, we always hear and feel it. It makes a sad sound. It makes our heart ache.
Difference ~ His deafness is neither a talisman or a curse, but something at once more prosaic and profound; an aspect of himself. -Leah Cohen, whose paternal grandparents are deaf.
What is wrong with this picture? Which one is not like the others? Which one doesn't belong? Picking out what's different is a skill we begin learning as young children. By the time we are teenagers we've become expert at finding who and what doesn't fit. It's a useful skill, enabling us to choose the freshest flowers or avoid the pothole in the road. But it can get in our way when we think about people with disabilities, leading us to focus on what's "wrong" and on how they are different from others , and to believe that disability means "abnormality" or "deficiency". It may lead us to think our own children can't belong because they are different. Our child's disability is a reality, but it is only one part of who he is; it need not define who he is or who we are.
Saturday, January 20, 2007
Our good friend and my co-worker Marcus was able to capture some great photos of Burke in mid December. We've decided to make all of the photos available for purchase to raise money for Children's Hospital. We feel very compelled to support the place that helped to save Burke's life. We realize that without their expertise and state of the art interventions, Burke would not be where he is today.
Please take some time to look at the photos and consider purchasing a few to support Childrens Hospital! http://fdlphotography.smugmug.com/gallery/2293827
Password is: Nelson
Lots of Love and Thanks!
Chris, Nate & Burke Nelson
Wednesday, January 10, 2007
Burke is now a whopping 12# 14oz and 23" long! Overall, he is doing great...growing and changing so much everyday. He especially loves his bathtime and is so cute in his little froggie towel (Thanks to our friend Kate!). We just got his new hearing aids yesterday...they're blue and look great on him (they match his eyes)! He is really responding well to our voices and starting to coo and talk (especially first thing in the morning...at like 4am)! The best part is when we turn on his hearing aids and the first thing he does is smile and giggle at us...it's amazing to experience a connection with him on this level!
Burke has slept through the night for the past 2 nights so we are feeling great...it's amazing how much a little bit more sleep can help all of us! I'm working part time and really enjoying being back in the office with my colleagues..it's great interaction and mentally stimulating so I feel refreshed when I return home! Erica is our nanny and she is doing a great job caring for Burke...she lives next door so it's super convienent for both of us! Nate is also doing well and enjoying his new job with DSHS as a social worker III for the guardianship unit.
God has been so good to us through this past year and we know that 2007 will bring much healing and peace to our family! Keep ya posted...more exciting changes to come!
Monday, January 01, 2007
Happy 2007!!! Sorry for the lack of blogs, our computer went down and by the time we got a new computer the holidays happened.
Burke is doing very good and is healthy and growing. We took Burke to Yakima for Thanksgiving and Christmas, both times were very healing and comforting for Chris and myself. Burke was loved on by family and friends and he loved it. Chris stayed a few extra days in Yakima after Christmas with Burke and continued getting loved on by family.
We want to say again how thankful we are for the support everyone gave us throughout 2006 and our journey. The support we recieved was want we needed and could not have asked for anything more. In the next few days we shall update you all more on the progress of Burke and our family.
Love to all