I need to update

I am struggling right now I need to do a long update but mostly I need to rant about how we have a man in office who doesn't stand to help children like Josh that are hearing impaired but take away their rights.I can rant on my current mood is angry and pissed off.NO GOOD WILL COME From this man.

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.