Not flesh of my flesh, nor bone of my bone; but, still miraculously, my own.
Never forget, for a single minute you didn't grow under my heart, but in it.

Wednesday, January 11, 2012

Noah update


Today my Panda Boy Noah had some testing  for his hearing.   First thing she did was a test for pressure in the ear. 


He has a lot of pressure in his ears, one side was completely flat, the other had slight movement.  She said this is an issue that the ENT that sent us here will decide how he wants to medically deal with that.  We may be looking at tubes again for this issue.  

Then she took him into the booth and he was quite unsure about all this but she was so sweet and tried so hard to get him to be comfortable and play with him.  Then she did a regular hearing test. With headphones on his ears. 

Here she is showing him the pegboard that he will place pegs into as he hears sounds.

having to hand over hand at first.  He really was not impressed. He kept looking at me with that help me look but she was not hurting him at all.  At one point I had to hold his hand while he worked with the other one!


She was soo good with Noah especially since he really did not want to cooperate at all at first. 




After she did the regular hearing test, she did a special test that has these headphone sorta things that sit on his skull, and not his ears. This shows what how he hears with the actual auditory nerves she explained.  She says that he has permanent hearing loss. He hears but there is definite loss of hearing.  One side is worse than the other.  She had this chart she was charting on during the test and the highlighted area was the normal hearing range and he had nothing in it and the highest one he had was still a ways from it.  She said the pressure in the ear could account for not doing well on the first test, but the second test was on the skull and used the hearing nerves or something and she said that if that test had been normal she would know that it was all related to the pressure, BUT it was not normal at all, it was basically the same. She said he was very consistent during both tests and it was obvious when he heard it by body movements as well as his reaction. She said he has permanent hearing loss and she believes the entire speech issue is because of this.  She said that basically speech is not going to do any real good as it is right now.  She said that she is sending all this information to Noah's ENT to see what he wants to do medically about the pressure (tubes are possible again).  Then he will come back to her again and she will redo both tests then to get the most up to date and accurate results with the pressure relieved and then she will send him to get hearing aids. She said for now with the hearing aids he should hear better and do better with talking and with speech therapy and his lessons.  BUT :(  she said she is concerned this is progressive hearing loss.  There is not way for her to know for sure but she believes it is.  Which is killing me.  I cried all night in service at Church because I kept thinking how much he loves music and begging God to let him keep his hearing for his music.  We discussed sign language and she said it would be helpful to him now for us to go ahead and do sign with him (I did it when he very first started learning to talk, the little bit of baby sign I knew and what ASL I remembered on his level and he signed first, then signed and said it and then eventually dropped the sign) but to make sure and say the word out loud with the sign.  She said that it will help him with his frustration with folks who dont understand or when he cant get the words out he wants to say.  She said he has already learned to compensate for this some and saw him looking at her mouth and such.  Also if it is indeed progressive then he will already know sign as will we and he will be able to communicate.  I am so upset. She said at this moment there is no way to know for sure what caused this.  She did say that ENT will contact Pediatrician (as I will too) and that standard procedure is a CT scan and bloodwork whenever a child has a diagnosed hearing loss.  I still can't believe it is a permanent loss.  Please keep Noah in prayer as we go forth with what all we need to do to help him to experience his love of music and the world and to actually hear things better and clearer.  She said he will probably fight the hearing aids at first but eventually if we can make him wear them all the time he will like that he can hear better and he will ask for them.  I am so praying that it is NOT progressive and of course for total and complete healing but we will go forward doing all we can for him until then.  I am wishing that we could get in to ENT NOW to get started with getting the pressure gone and then get to hearing aids. I hate to think that he does not hear well.  So much in life we enjoy through hearing.  He so loves music now and it makes since now why he loves to touch things when music plays and why he is always on top of the tv practically.  I so dont want the music he does hear to fade, but to get clearer and stay that way.   I know this is not just dreadful news, its not life threatening or anything but it is still saddening me so much the thought of what this could mean for his future BUT I am so trying to just be excited for at least now they think hearing aids will help.  I am already worreid about how I am going to teach him to read if he can't hear the sounds and words.  She did say that at this point not really any point in doing the lessons with him because he is not hearing it correctly.  Anyway, just needed to come and share with yall about my Panda Boy are the results of the testing today.  I cling to the fact that my God is ABLE! 

7 comments:

doorless said...

Sorry. God is indeed able. He has a plan in all this.

lorabelle said...

I would go online and do some research regarding teaching the deaf or kids with special hearing concerns. There are plenty of ways to teach our children and you can incorporate these into his lesson plans. Signing is a great idea and I would begin this right away - you can make it a game with him and I bet he'll love it! Keeping you in my thoughts and prayers Tami. You have a lot on your plate! Noah will be just fine. He's a strong little man and I have a lot of faith in what he can do!!! Big hugs to you and your family.
Lora

Cat said...

So sorry Tami. Take this one step at a time. We are here for you. He WILL learn to read! Don't worry about that. Just love him and start up signing again! Hearing aids can do wonders. I pray that they will really help. Hugs!

The Family K. said...

Oh, Tami. This is hard news. I hope you're holding up okay. Don't lose heart; like Lora said, there's much you can do to encourage communication with him, and who knows what good God might have in store? Hold on to him.

Robin said...

Tami- First let me say how sorry I am that Noah's hearing test revealed less than perfect hearing. There is much than can be done with children that have hearing impairments. I am an SLP in the North East and I did a quick search for some resources for you. I'm giving you link to the LSU department of speech/language hearing clinic
http://appl003.lsu.edu/artsci/comd.nsf/$Content/General+Information+-+Clinic?OpenDocument

Another good resource would be Louisian School for the Deaf (and hard of hearing)

I am sure you are anxious to find out more. There is a ton of research and resources out there from hearing aids, sign language, aural rehabilitation, cochlear implants. I am sure your pediatrician and ENT with have some good referral information as well.

Having a hearing loss will impact reading but the skills of reading can still be taught.

Hope that helps a bit.

Paul and Heather said...

tami - although much of life is enjoyed thorugh hearing, much of life is enjoyed without hearing as well. We have a deaf cousin and he has one of the most full, happy and lovely lives you could imagine. He experineces life more fully through his other senses, has more friends than I could imagine and I have learned that the deaf community is one of the closest I have ever seen. If he does lose all his hearing, he will view it as a loss only if those around him do. You must view it that is abilities are different than those who hear, but not less than those who hear. I know it is hard to hear that our children may not be able to do something that other kids can...but you have to try to look at the positive too. Noah can still have a full life without or without the ability to hear! Best wishes!

Stephanie said...

Tami, SO much can be done as he is SO young. My son came home at 4yo. He is deaf due to AN. Anyhow, at Noah's age, lots of technology can help aid him. If hearing aids do not work, there are all kinds of implants now. My son can now hear due to his implants and loves music. You'll learn a ton over these next few months. Don't worry it will be overwhelming at first. However, it will be alright too. They'll do an ABR on him for sure. Or should. Join the deaf/hoh yahoo group. Great resource. Lots of info and help out there. Best wishes to you. Stephanie

THE WAIT FOR NOAH IS OVER!!!! November 3, 2007~September 8, 2008 First heard about Noah~Noah in our Arms!
AND NOW THE WAIT FOR JEREMIAH IS OVER TOO!!!
April 1, 2009~ June 7, 2010 First committed to Jeremiah~Jeremiah in our Arms!

The FIRST Picture we EVER saw!

The FIRST Picture we EVER saw!
Noah WesLee 5 months old

The First Picture we ever saw of:

The First Picture  we ever saw of:
Jeremiah Harold Sisemore ~1 year


Kisses in the Wind

KISSES IN THE WIND
I hold you in my heart and touch you in my dreams.
You are here each day with me, at least that's how it seems.

I know you wonder where we are... what's taking us so long.
But remember child, I love you so and God will keep you strong.

Now go outside and feel the breeze and let it touch your skin...Because tonight, just as always, I blow you kisses in the wind.

May God hold you in His hand until I can be with you.
I promise you, my darling, I'm doing all that I can do.

Very soon, you'll have a family for real, not just pretend.But for tonight, just as always, I blow you kisses in the wind.


May God wrap you in His arms and hold you very tight.
And let the angels bring the kisses that I sent to you each night.


When Love Takes You In!