Tuesday, July 31, 2007

July 31, 2007...Updates!

Hey all! Happy First Birthday to Burke and 31st to Chris!

We're doing well.... Burke is on the surgery schedule for his cochlear implant on October 9th! We're so excited! He's doing well with his hearing aids but we're ready for the implant as it will give him even more access to sound for language development. He's being evaluated for growth hormone definciency and currently taking testosterone shots once a month for 3 months to help his little male parts grow :) He's stronger and has hair on his chest (haha...j/k)....actually he's stronger and is holding his torso and head much better. He still needs support to sit but can do it on his own for about 30 secs to a minute if he's well occupied. He still isn't crawling but can spend more time on his tummy and hold himself up on hands and knees...I know just one of these days I'm gonna be putting up baby gates all over the place...he's such a busy bee! (that's a nickname for him by the way...bzzzz...bizzy beeee!)
Nate is currently working on his counseling practice in the evenings and staying home with Burke during the day while I work until 2pm...it's going very well! Burke really likes spending time with his daddy and visa versa! It's really helped him develop physically as Nate is great at doing physical therapy stuff with him during the day. The speech and language pathologist told us he doesn't need feeding therapy...oh my goodness...we were super excited!!! Oral skills and feeding were supposed to be the area that he was expected to need the most help with...we are so fortunate!
So, we're looking forward to a trip to the Washington Coast with the Nelson clan this coming month...we can't wait for Burke's mouth full of sand and salt water :) We still have lots of appointments in preparation for the cochlear implant surgery in October. We have 2 different home visitors (physical therapy and auditory verbal therapy) coming each week along with more testing for his possible growth deficiency. Busy times! All in all, we're in good spirits and so thankful for our happy and amazing little boy who lights up our lives each and every day! praise praise for such a beautiful blessing!

Sunday, May 27, 2007

Burke enjoys memorial day weekend!

Just a few cute updated photos of our boy! We're currently doing well after a big scare on Wednesday morning when Burke stopped breathing after eating his bottle. I (Chris) had to ressucitate him and thankfully was successful. he was blue and limp for approx 1 minute but started breathing again after I gave him mouth to mouth. We took a ride in an ambulance around the block to Childrens and then spent the night in the hospital but all checked out well and the tests on his swallowing and esophagus were totally normal. The experts think he was so upset and refluxing his milk so much that his body naturally shut down his airway to protect itself from aspiration. Burke bounced right back and has been fine ever since...the nurses thought he was so cute and happy in the hospital and asked if he was always this happy...the answer is yes with the exception of Wed morning :)! We're in the process of getting approved for a cochlear implant. We have approx 3 appts per week and they are pretty intense and exhausing for all of us (hence the lack of blogging lately). We hope that Burke will be approved (basically his hearing has to be bad enough to need an implant which we believe it is) and will have surgery sometime in July or August for the implant. The surgery is complicated but we have the best of the best surgeon who is one of the leading experts in our country! We've also discovered that Burke is lacking growth hormone so we'll be going to have more testing done in Endocrinology clinic and then he'll begin to receive injections of growth hormone for the next (get ready...) 16 yrs! aaaahhh...that is overwhelming but we're glad that they are catching this early so he doesn't loose inches or time for growth! Burke is a trooper and we're trying to hang in there with him...he's quite a kid with lots of personality. He's got a great sense of humor, loves to laugh and play, loves music, rides in his stroller, the wind in his face, his kitty cat, his silky green blanky, putting things (everything) in his mouth, the cool grass on his feet, stroking my hair when he falls asleep, eating, socializing and getting a bath. He doesn't like naps or being hungry and that's about it...pretty content for such an "exciting" lifestyle! :) Much love to you all...thanks for keeping up with us! Chris

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Monday, April 30, 2007

Awesome DAD!

Pictures speak a thousand words...Nate you rock!

Sunday, April 22, 2007

Burke E. Nelson poses for the camera

Hello everyone, sorry it has been so long that we posted our last blog. Our schedules and appointments have kept us going day after day. Burke has been doing very well and he has been working dilgently at listening, talking, gaining muscle, playing, and growing...he's approx 15 lbs now! We're full on into the process for getting a Cochlear Implant for Burke...we think he's going to be a candidate but there is much testing to be done before they'll make a final decision. Our days are filled with lots of time spent eating, practicing our "auditory verbal" therapy, dealing with his hearing aids (which are working great but are a pain to keep on his ears and from buzzing with feedback) motor skill development and just playing and loving our time with this precious boy. He is soooo happy, content, playful, adorable, funny and giggly! His sweet little personality is really starting to show...he's totally cute! We have more good days than hard days now...but, we're still a little low on sleep and a little stressed with all of the appointments during the week. We hope that after his Cochlear Implant stuff is over the appointments will be slowing down a bit.
On another note, I should mention that these gorgeous photos are just a few of our favorites from a photo shoot that we had with our friend Jenny in Yakima. She offered to take professional photos of us and let me tell you, they turned out amazing! It was so healing to look at Burke interact with us through the lense of her camera...it was like stepping back and getting a fresh perspective on just how amazing he really is and how the hours of hard work are paying off!
Wow, it's been a long road through the winter months and we're sure glad it's springtime...the flowers and trees are in full bloom here in Seattle and we get out at least every day for walks. Yipeee! Burke loves the fresh air and all the sites and sounds on the Burke-Gilman trail! (he even likes going shopping with mommy at U Village :)) We are looking forward to a good summer...we plan a road trip to visit Nina (Chris's mom) in Sacramento with a stop in Central Oregon to visit Uncle Dave, Uncle Stealth, Auntie Shelly and Auntie Jenni (Chris's bro's and sis in laws). We pray that Burke adapts ok to the car ride (he gets a bit antsy in his car seat so we'll be making lots of stops to stretch our legs)!
We hope to post more in a few weeks when we have more info about Burke's hearing and CI stuff...keep checking in! :) Love to you all!

Monday, March 12, 2007

Papa Tom's photos from 2-19-07

Papa Tom had a fun photo shoot with Burke a few weekends ago when we were in Yakima visiting family! Isn't he the cutest?! We think so!
As of Friday 3/9 Burke weighs a whopping 14#~~ gooooo Burke! He's holding his head up much better and tolerates being on his tummy more now (our OT/PT will be very happy to hear this)! Our weekend on Bainbridge went fabulous last week...Burke and Nate had a total bonding experience as they survived a whole 24 hrs without me! Nate later told me that he realizes just how much work it is to be the only one caring for Burke during the day...he is a lot more sensitive to my needs now and knows how to be more helpful...this is great for us all! :) We took Burke out into pulic with us for the first time...went to church with our dear friends Mark & Elle (and Burke's future wife Avery) :) then out to lunch for Indian food..yummy! Burke LOVED it (not the indian food) but being out and about...he's such a social little guy! People were good and stayed away and didn't touch him...I was on high alert and had purell ooooozing out of every pocket just in case! :) This past weekend we took him with us on our monthly run to Target & Best Buy...he sat up in his stroller with his eyes as wide as saucers taking in all of the sights and sounds of the world...he really loved the TV/Speaker section of Best Buy and Nate thinks he thought the lady on the Wii video game was a real person...hehe...I think Nate wants to make a case for why we should buy a Wii for Burke's communication development then he can play with it too..hmmm...these guys...always trying to play video games no matter what age! All in all we feel so liberated to get out and about with Burke...it's so much fun to show him the world and watch his reaction to life outside of these 4 walls (which are slowely closing in on us as we continue to accumulate more baby gear...ugghhh!)
This week we have a big appt with the urologist for evaluation of Burke's undescended testes (don't tell him I told you cause he'd be pretty embarrased!). He may need a minor surgery to bring them down to where they are supposed to be (hopefully no big deal but we'll see). We also have an regular check up with his pediatrician. On wednesday we have a date with our friends Mark & Elle to go to the ballet (complements of Microsoft) and our good friend Elysia will be watching Burke (sleep hopefully). Nina comes in for a weekend visit from Sacramento so we are really looking forward to a full week of fun!
Thanks for checking our blog and keep checking back for more updates!

Friday, March 02, 2007

Big Boy takes a stroll B.O.B Style 2-26-07

Forget the carseat, we're rollin Big Boy Style!! Our physical therapist ok'd us to use the stroller with Burke looking out at the world. After our appointment, I immediately came home and got him ready for his first big boy stroll. We went to the water to look at the ducks, found some pretty pink flowers to smell and admired the trees from a different perspective! He LOVED it! Burke is so focused and pays very close attention to his visual surroundings...he is a very smart little boy with much patience (just like his daddy)!

Today we had a great visit with Grandpa and Grandma from Yakima and auntie Layci and Uncle Nick from Tacoma. Tomorrow we are adventuring over to Bainbridge Island where I'm attending an overnight Women's retreat with my friend Elle while Nate and Burke stay with Mark (Elle's husband) and baby Avery...it will be an exciting time for Elle and I to enjoy one day and night away and get some good "girl" time and be encouraged! I am a bit nervous about how Nate and Burke will do without me but I have a feeling they'll survive (we've been through worse!) The only trick will be having enough milk for Burke...I'm still pumping by the way (8 months going strong!). We've calculated out the amounts and it looks like we'll have to make a "milk run" mid-day on Saturday but some of the ladies at church have volunteered to transport some milk (40 miles away) so I won't have to miss out on any of the retreat...I guess it's a little awkward to have a special transport set up for milk with someone I don't know but oh well..it's worth it! :)

Burke is such a fun little guy these past few days! His auditory verbal therapist is amazed at his progress and says he's got great cognitive abilities (beyond what she would expect for his age and preemie status)! Burke enjoys play the lights off lights on game...I flip the light switch on and off and point to the lights and he smiles and giggles. He is really getting the whole cause and effect thing now...he is already turning his head back to the light switch expecting me to turn the switch off or on...it's his way of requesting that I keep playing the game...soooo cute! He's becoming very interseted in the cat (who is currently scared of him) and he had a chance to pet her today and it was very cute. He's holding his head up now and able to sit with minimal support and play with his toys. He likes the little blue bird that chirps (Nina sent to him for Valentines day)...he also likes his soccer ball ALOT! (hmmm...I wonder who he takes after (like all of his 9 uncles who play soccer and not to mention his daddy who was a professional))! We've decided to train him to be a goalie...we figure with his sharp visual skills and good hand eye coordination he'll be perfect!

OK..enough for tonight...It's really late and I need to be in bed but was up working from home on a big project. I figure Burke will be up to eat in about 1/2 hr anyway so why go to bed now when I'll just have to get up...but, my eyes are drooping and head is heavy..big day tomorrow with lots of prep and packing for our weekend away...wish us luck and we'll fill you in when we return!

Sunday, February 25, 2007

Holding on...2.25.07

This week Burke has made many accomplishments! He's been holding his own bottle for the whole feed and eats every last drop! yum yum yum!!! He's been scarfing down his green beans (favorite so far) and holds the spoon and feeds himself..(what does he need me for now?) :) We are super proud of how well he's been eating and the determination he has to embrace all the challenges set before him! You go Burke!

Thursday, February 22, 2007

Valentine Weekend 2.17.07

Hi! We had a great long and relaxing weekend in Yakima with the grandparents. We had time to relax, eat great food, get some sunshine and go for long walks! Burke continues to grow and eat well. He sat up in his booster seat at the table with us and it was fun to feed him green beans while we ate! He fell in love with his little soccer ball and now it goes everywhere with him...like daddy like son! We are so proud of Burke and enjoying him more each day. Life is normalizing for us more lately and we are getting more sleep which makes everything better. We are really concentrating on teaching Burke all about words and sounds...we do lots of "radio commentary" all day long. Basically we talk to Burke about everything we do, see and think and try to link sounds, sights, music and expressions to our words. It's exhausting to talk so much and try to think of things and ways to describe the world to him but exciting to watch him starting to comprehend. This week we got an FM system for Burke's hearing aids. Basically either Nate or I wear a small lapel microphone and a wireless transmitter box that clips on the belt. This allows us to transmit our voice directly into a receiver attached to his hearing aids thus direclty into his ears which allows him to hear us more clearly in noisy situations or when there is a lot of feedback from his hearing aids. He seems to be responding well to our voices and we can talk to him up to 150ft away! It's great to be able to comfort him with my voice from the other room...he definitally calms down when he hears our voices!
Well...better get to bed! Uncle Bubba (Tim) comes up to visit tomorrow so should be a ton of fun! Love to all of you and thanks for keeping up with us and please continue to pray for us and especially for Burke's hearing improvement and continued improvement in feeding. Praise God for his grace in our lives...it's because of Him that Burke is so full of life!

Thursday, February 08, 2007

2-8-06 Fun times

Here we are just having a good time enjoying our little guy! This photo was taken last week after we had a nice long walk with grandpa & grandma! Burke loves to get outside and enjoy the fresh air...even if it's raining!

Yesterday Burke weighed in at 13# 7oz....he's certainly growing well and eating like a champ...he tried sweet potatoes today and thought they were yummy.

to see videos of Burke go to www.youtube.com and log in with our user name:Burke 26 and password mayb362676

Tuesday, February 06, 2007

2-7-07 Amazing Bond

We've been having a great week! Burke has been so much fun to play and interact with. He loves to laugh and talk...and he especially loves daddy time! This week Burke has been able to eat a few times without being hooked up to his tube for "decompressing"...this has been a very exciting accomplishment!

Nate and I are both experiencing an intense and amazing bond with Burke. Yesterday Burke looked at me in a way that he's never done before...it was like he looked directly into my heart and I completely melted. It was almost like God was speaking through him saying...I love you and it's going to be ok. The really interesting part was that Nate had an entirely seperate experience with Burke that was very similar to mine. It wasn't until this morning when I was describing my experience that Nate explained he had the same! Burke has an incredible ability to communicate and relate to us...he is so "in tune" with his surroundings and the people in his life! His auditory verbal therapist says she would never have known he was a premie by the way he interacts socially...he is exceeding in his ability to communicate and connect...what a huge gift God has given us in this little boy. He inspires me every day!

Tuesday, January 30, 2007

Hearing Test results 1-30-07

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

1-26-06 7 months ago...

It's hard to believe 7 months ago we had a baby...let alone believe that just 7 months ago we were living an entirely different life than now. These past months have seemed like years but at the same time have flown by. In all ways, our life has been totally transformed but not without much sacrafice. It has been breathtaking to look back at where we were just 7 months ago. What is truely incredible to see is the physical, social, emotional and mental growth that Burke has accomplished as well as the growth of our relationships and faith.

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

Beautiful Baby...photos to support Children's Hospital

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

1/10/07 Little Guy is growing!

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!!

Hello all,

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