Tuesday, February 1, 2011

Exactly what I expected I didn't want to hear

Well you had your hearing test done today and you failed. In both ears.

From what I understand this could mean a lot of things. That either you are profoundly deaf in both ears, profoundly deaf only one ear with partial hearing in the other, or it could mean that you have only partial hearing in both ears.

We wont know for sure for a few more months and more test but for sure you have a least a some degree of hearing loss.

I read that 90% of those with charge have some degree of hearing loss so I was not surprised but it was still hard to get the results.

I wonder if I will be able to torture you with my singing like I do your brother? Well if nothing else I've been holding you close to my chest so you can feel me singing to you.

Getting the hearing test

The insurance company is fine with us transferring to Loma Linda if our medical group will pay for it. Our medical group is fine with us transferring to Loma Linda if our insurance will pay for it. Both are saying heck no they wont pay.

So it doesn't sound like we are going anywhere anytime soon.

You poor Dad is spend endless hours on the phone with the various case managers and will continue to fight for the transfer but for now we are going on as if we will have to stay here.

The Dr's at CHLA have ordered your sleep study and a GI Dr to see you so we can get your feeding tube surgery done.

We think once these two things are done, and treated as necessary, we SHOULD be able to get home but we don't know how long that will take.

We are going to ask for a case conference with the Dr's to find out what has to be done, and how long they think it will take, till we discharged home.

They have put your feedings back to bolus (larger amount in a shorter amount of time) to get closer to what a regular feeding from a bottle would be like. You are doing well so far, and if you continue to do so we wont have to give you your feedings with a pump.

Daddy practicing giving you your feedings
The nurse giving instructions (note the illegal diet Coke on the table)

Could you be any sweeter?

I learned my first sign today Mason.

I love you Jelly. Always will.


Valerie said... Best Blogger Tips

*hugs* I am keeping little May in my prayers. You are such an incredibly strong woman Amy. xoxo.

Leslie said... Best Blogger Tips

He's so beautiful. Love that picture of him. I'm so sorry about the results of the hearing test. ((((hugs)))))

ellen charge said... Best Blogger Tips

well like u said nto so surprising on the hearing front n big hugs

goodgirrl79 said... Best Blogger Tips

May I suggest that you go to your local library and check out any of the "signing time" videos.

They are AWESOME and will help your whole family learn sign. If your library doesn't carry them you can buy them at


Also check your local PBS stations because some of them air episodes of signing time.

My kids love to watch the videos and both kids signed for a while as babies. Totally worth the investment for all kids but especially if Jelly is going to need sign to communicate;)

vback said... Best Blogger Tips

My first question is does CHARGE affect the possibility for impants like cochlear or some other superduper high tech gadget? Regardless, obviously Jelly is destined for greatness ... Helen Keller, Marley Matlin and so many more. My husbands cousin teaches deaf and blind children and says they amaze her beyond belief with their will and determination. Sorry about the no transfer situation. Hopefully soon someone will say uncle!!

Cindy said... Best Blogger Tips

i am so sorry to hear that but the beauty of it is that you live in the prefect city for sign language. We have the California school for the Deaf locally and they are wonderful over there and can provide hundreds of resource. The older lady down the street who walks the weiner dogs works there. Mason will have plenty of friends who will know sign language because there is such a large community of deaf people here. I also know a few people at my church who either work at CSDR and there is a family who have a sign language interpreting business who sign to all three of their little boys. Pierce will pick it up quick too.

Crystal M. said... Best Blogger Tips

Eva failed her hearing test as well she has moderate hearing in one ear but almost no hearing in the other, but she amazes us everyday with what she does hear. Hang in there it will be ok and hearing aids do wonders.
Crystal and Eva

mj said... Best Blogger Tips

Lots and lots of hugs and prayers to you Amy! Like Val said you are such a strong woman and mother and I know you you guys will make it through this.

Ketcham22 said... Best Blogger Tips

Thanks for posting on Nick's blog! It's great to hear from another charger! Little Jelly is so adorable and it looks like he is really a fighter!
Don't stress too much about the hearing test...Nick failed his first hearing screening too. Does he have fluid in his ears? I believe it's very common for babies with cleft palates to have some fluid in their ears which will affect test results. Nick had his second hearing test a few months ago and his right ear is in normal limits and he has a little hearing loss in his left ear BUT he still has fluid in his ears....so it's like trying to hear under water! Of course he's not going to have a good test LOL When he has his cleft lip surgery in a few weeks they are going to put tubes in his ears and that will help with the fluid, they will also do another ABR to check if he actually does have hearing loss.
Nick does have very chunky cheeks but he's still small, he almost 6 months and only weighs 13 lbs....he's slowly growing but he has a hard time eating large amounts. I see you are using the Pigeon nipple-how is that going?
I will be following your blog as well! Lots of prayers and hugs too!

AnnMarie said... Best Blogger Tips

I too was going to suggest the Signing Time Videos....my kids love to watch them and you wouldn't believe what you can pick up from them as well. You all continue to be in our thoughts and prayers.

Ann Marie

The Houston Family said... Best Blogger Tips

Ditto on signing time. My library has them all and we love them!

Catherine said... Best Blogger Tips

hi thanks for getting in touch.. Reuben has mod-sev lost and last year said bye bye to his trach.... so I wanted to share this little video to give you hope!!! congratulations on the birth of Mason... can I do anything to help? would you like a visitor? Just check this link out pls... http://reubenjackdodd.blogspot.com/2010/11/reuben-signing-and-signing-abcs-123s.html

Catherine said... Best Blogger Tips

and this is where he came from... the worst! http://reubenjackdodd.blogspot.com/2007/08/wrapped-around-your-finger.html HAVE HOPE...

Catherine said... Best Blogger Tips

Check with Medical. You may qualify for the waiver. After months of struggling (had we known it would have been easier), Reuben was given the medical waiver with no share of cost. We have no financial pressures from his medical issues, and nursing is also covered. CCS will cover the hearing aids. Pls look into this. I can share some numbers too. Catherine 310 430 3701 (lost my charger so pls leave a msg or blog).