I haven't written in a while.

Along this journey I am discovering things about myself I am also discovering that there is shame and stigma involved.We are in the process of getting Josh more help from the state and when we were denied had to go to SSI.For some reason Ken's parents are absolutely against SSI and are determined to make their son not do what is best?So his mom said today we should go to Shriners .I can't believe how ignorance can produce huge stigma sometimes.I thought I was doing what is best for Josh but some people need to butt out.

National craniofacial acceptance Month

Before Josh was born I had never even heard of the word craniofacial.Since his birth we have been on an incredible journey with our son.When others look at him they might see a kid with only one ear,but when I look at my son I see my hero.Take a moment to visit Childrens Craniofacial Association and learn about our wonderful children.
I am thankful to the Lord for humbling me to my knees and lifting me out of the pit and depending on him totally for provision in our journey.
Celebrating Joshua and the craniofacial kids.,

It takes a Village to Raise a Baby!!!!

I realized the other day that it takes a village to raise a child with microtia.Josh is doing so well developementally.But we are now beginning to build his team of specialists to help us on this journey.To date we have seen a nurse practitioner in October 2010 at Seattle Childrens she was less than helpful.Our visit at the end of last month to Portland and OHSU yielded more info but I feel like I learned more after I returned home as of late from talking to our wonderful audiologist Roxanne.She is thru Early Intervention and I am truly blessed to have found her.Josh will be going on the 30th to be having a hearing test because she wants to start conducting regular hearing tests with him after he gets these infections in his microtic ear.She is also going to give me the name of an Ent in Tri-Cities which is about an hour from here.This particular doctor has experience with the BAHA and I am starting to wonder if I should see if he can do Josh's ear tube so we can establish Josh as a patient of his.As I realize it takes a village to raise a baby.One blessed baby who will bless more in his life.

Trying to process

Josh's appointment was today and I heard alot of what I did in Seattle.I feel like the doctors don't know enough about microtia.When I asked about the BAHA today the doctor basically acted like he didn't really want to help us.First of all why do I want to let my son suffer when I can get him a hearing aid.Then there are the hurdles of the insurance and medicaid neither will cover the BAHA so what is the point.I feel like screaming I am angry someone tell me where to go or what to do to help me son.

Josh's 6 month Early Intervention Evaluation.

Overall it went really well.We have started to notice some differences and it was great to sit with the two therapists and discuss strategies for helping Josh to overcome these challenges.We need to get him to use his left side more.It isn't uncommon for children with microtia /atresia to use one side more than another especially on the affected side.We will be working to encourage this.The other area we need to work with is speech .Josh reached a certain point and isn't making any new sounds.It is a sort of reconfirmation of his hearing loss.Josh's therapist asked us to begin using more sign language with him.She thinks that it will help us to communicate not only now but also as he gets older.Lastly I am asking people to pray that the audiologist will see Josh's need for a special hearing aid that can help him.We can't afford it on our own but we know our Jehovah Jirah can.

The emotions pre appointment

Joshua's big appointment is February 28th at 9 am when we meet with an audiologist at OHSU who will finally be able to give us answers as to what his hearing loss is.Afterward we will meet with a specialist who I hope can give us some answers as to how to handle the fluid pockets and ear infections.There are so many questions I need to write them down(a reminder I need to get yet another notebook) and honestly if I stop to pause I might forget one.I am so thankful that the Lord has already gone before us and made provision in a place to stay.The wonderful pastor who married us and his wife are going to let us stay with them.Our older kids are being cared for at home.Another provision.The is also the nervousness that I am feeling sort of like the tunnel of the unknown.As I have come to realize Microtia and Atresia is not a straightforward condition and there is no one answer for every kid sort of like a one size fits all type of situation.
Then there is apart of me that is happy.Happy to finally 10 months into this journey be getting answers for our precious boy.

trying again

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

There it is!Momentary lapse of computer use skills LOL

This poem describes my journey

http://www.our-kids.org/Archives/Holland.html

The cycle of infections

My poor boy has another infection.And his momma is crying I feel like it is the same story over and over.I shared my story on another blog I post on and the response has been overwhelming.Colleagues in the music business have reached out and I am so touched by their support.Does it get easier?One day at a time looking forward to our big consult even more now.

Time for an update

First of all Josh is doing wonderfully well.Meeting developmental milestones left and right.We are so proud.We are noticing a few things with his balance here and there totally normal from what we have heard about microtia kids.The big news is we finally got a referral and appointment for the trip to Portland and Oregon Health Science University.Amazing what switching insurance will do.
We also got in with the top Cranio-Facial Specialist/ENT.I got to talk to a nurse practitioner about what is going on and she was very helpful.There are so many different questions and issues that are popping up I will do a more detailed post soon but right now I am chasing a baby on the move:)