Monday, February 13, 2012

God Gave Us Two Ears

First of all, I want to thank you for your kind comments, emails, facebook messages, tweets and texts this week.  It really means so much to have others gather around us, pray for us, and encourage us. If Forester only knew or could understand...

Our boy did amazingly well with all three of the liquid steroid procedures. It's not something anyone would volunteer for and he remained calm and compliant each time. Pete and I are so proud of him and his willingness to just take what comes at him. Today was his hearing test to see if the steroids worked.

They did not.

If anything, his hearing decreased a little bit.  

Yeah, I know.

I didn't have high hopes walking into today because I knew he still couldn't hear well but I still had hope for something. Even when I tried to protect myself, I still had hope.  I'm sad for him that this is the final result. I'm still sad about all the things I already said I was sad about. Meanwhile, Forester looked disappointed when he heard the news but a few moments later returned to his DS playing. He "seems" fine but I hope to really talk to him about it tomorrow and make sure he's ok.

What Next?
So, that's it as far as intervention to try and reduce or improve on what damage has been done. We were given a lot of tips about how to deal with his impairment. Mainly how it will affect him in the classroom and what proactive steps we need to take in that regard. Our doctor also explained why a Cochlear Implant would not work for Forester. The really short version is that Cochlear Implants do not produce the same sound that you and I hear. Therefore, if you have one functioning ear, the implant would be a competing sound as opposed to a complimentary one.
Forester is a good candidate for a bone anchored hearing aid, also known as a "Baha".
"A Bone-anchored hearing aid is a type of hearing aid based on bone conduction. It is primarily suited to people who have conductive hearing losses, unilateral hearing loss and people with mixed hearing losses who cannot otherwise wear 'in the ear' or 'behind the ear' hearing aids. Bone-anchored hearing aids use a surgically implanted abutment to transmit sound by direct conduction through bone to the inner ear, bypassing the external auditory canal and middle ear. A titanium prosthesis is surgically embedded into the skull with a small abutment exposed outside the skin. A sound processor sits on this abutment and transmits sound vibrations to the titanium implant. The implant vibrates the skull and inner ear, which stimulate the nerve fibers of the inner ear, allowing hearing." It would look like this:

For a boy like Forester who already has a significant scar down the back of his head and neck and wears his hair very short, this would be very visible and possibly a social issue.  Of course, Forester doesn't seem to be too self conscious at this point and we could let his hair grow longer (though it's pretty thin from radiation).  But, in very brief terms, though the Baha would bring the sounds he hears out of his right ear into his left ear it wouldn't make things perfect. Because this is major surgery and is a visible appendage, his doctor recommended that a decision for the Baha be made mainly by the patient and if he isn't old enough to make that decision to wait until he is old enough.

For now, I guess we'll see how Forester continues to adjust to the loss and if he begins to struggle then we will discuss the Baha. We go back in 6 weeks for a recheck to make sure he doesn't have anymore loss. 

Wednesday we head back to the hospital but this time to check the cataract that is forming on Forester's eye. Not the best timing. The poor guy could use a break. I'll post on Wednesday what we find out. He also has another MRI on February 27th, just a couple days after the 3 year anniversary of his diagnosis. Kind of strange to me to think that he's been getting MRI's every 3 months of the last 3 years.
I'm really thankful he's here (understatement of the century). I'm really thankful for MRI machines. I'm really thankful that God gave us two ears and that he still has one good one.
Please continue to pray for Forester.

 love,
 Whitney

3 comments:

Rebeccah said...

Whit - I can't even imagine how discouraging this is for all of you but I think sometimes you just have to wallow in your feelings for while so that you can move on. So, cry, be angry, be sad, whatever - it will pass and F is going to be fine. BUT I firmly believe that God did not spare him from cancer to have a crappy life -Forester is going to have a huge impact somewhere, I just know it. Love to you all.

the beam team said...

Whitney-
We've been praying for Forester (and you and Pete) the last couple of weeks. I know this process has to be so draining. Know that we are thinking of you and love you! You are such an awesome mama!

Thesupermanns said...

oh wow. Whitney...The Mann's are thinking of you guys. So sad that you are dealing with even MORE on Forester's plate. i love what Rebeccah said here...."i firmly believe God did not spare him from cancer to have a crappy life....he will have a huge impact somewhere".......
i have known those that have gone through the most in life to be the most ALIVE and loving ( most times)around me...if that makes sense....i pray that Forester's future seasons have much LIFE in them.....
nevertheless...this is HARD news. SUPER hard for a mama. ...may GOD take care of your heart too ...