Wednesday, March 10, 2010

Just plain bad news

I'm trying NOT to get upset about this. But, just a little history. When I was younger, before I met Hal...I wanted to adopt a deaf child, and I had friends who were profoundly deaf. I did American Sign Language classes in college, wanted to master in deaf education and teach deaf children, even spent days practicing my sign language with friends by playing "deaf" while being in a mall for a class project, I talked fluently in ASL for a while with a co-worker who is profoundly deaf. Not to mention, my dad is profoundly deaf. When my dad was very young, he had the mumps. Back then, if you had the mumps bad enough, you could lose your hearing. My dad lost all but about 20% in one ear. He wears only one hearing aid because it wouldn't matter to wear one in the other ear. So I have a history stepping in and out of the deaf community. But, never in a million years did I ever think I would bore a child with a hearing impairment! Never in a million years did I ever think that I would be able to handle that. But, here I am...faced with this great possibility!

Paige had an ENT appointment today. One of many appts at Pittsburgh Children's Hospital Ear, Nose and Throat clinic within the main campus hospital. We have met all of the ENT doctors at this point. Dr. Alper who is the main throat dr for Paige's larigo malachia. Then Dr. Kitso for her ears. Then Dr. Chi for the ear specialist. Then we met another Dr today (his name is lost in my memories) who is more familiar with cleft babies. Why we haven't seen him until today is beyond me. Perhaps, all these other doctors just figured we would be sent on to another doctor and SOMEONE would figure out why Paige's ear has been draining since October with only a few days without it. We have tried just about everything to stop this draining. Antibiotics, 3 different drops, exploratory surgery during her lip surgery, a wick, you name it, I think we have tried it. Nevertheless, the problem still exists. Then we meet Dr. Forgethisname today and his solution is "this just happens with cleft babies" Okay, why couldn't someone have told us that sooner??!!! He said at this point the draining is not bacterial or fungal, it's just drainage from her middle ear. Well great, established that, now what? He suctioned her ear AGAIN and she screamed as always. Next, I told him how she has never had her hearing retested since birth.

History about hearing retest. Paige failed the left ear at birth and pasted in the right ear. Tubes were put in in October to help the middle ear disease that is caused by clefting. So they tested her hearing today. After 3 different tests, basically all we know is that she did not pass on either side this time!!! They said that the right ear is too full of fluid. And the left ear, they have no idea why it didn't pass. Indicating more a problem that we originally thought. I asked how much she is hearing and they said it wasn't consistent enough to know. Now they want to put her under in a surgery and then retest using a type of brain scan that will tell if the ear are working at all. HORRIBLE! Another thing to put my baby through. They said it should have been done when she had her tubes put in but for some reason, it never happened. So here we go putting her under for a test. BLAH! It makes me sick to think about it. They did a hearing test in a sound proof room. I was there with her and she did respond to sounds in the environment but simple sounds at voice level she did not respond to. That to me is HUGE. She can hear if you yell at her but she can't hear if you talk to her. She will respond when you talk to her but she doesn't babble. She laughs. But she is no where near saying her first words.

So the main solution to all this is...palate surgery! When her palate is closed there will be no more drainage. There will be a possibility that they will just go ahead and retest her hearing then and hopefully she will be able to pass. But, there's no guarantee and the doctor did not indicate either outcome. I pray it's conductive rather than permanent but at this point we do not know. We are starting ASL with her to help her to communicate if there ends up being hearing loss for longer than we expect. I will teach Owen and Madison also to use ASL with her just incase. It never hurts to teach it even to hearing children.

So that's my long explanation for how today was. It sucked! Hal and I are just plain going with the flow with little Miss Paige. We will continue to do what is best for her but it's really hard. No one truly understands how hard it is to see more diagnosis thrown at your child, unless you have gone through it. It's difficult to know that my baby girl may never be able to hear everything. I pray it's not true but at this point, it wouldn't surprise me.

I'll update again soon


Lindsay K said...

Hey! It's me, Lindsay (Sierra's mom). Sierra had hearing stuff going on her first 5 or 6 months of life too. She failed her hearing test at birth also. She didn't get tubes until her palate surgery at 10 months, but we did have a hearing test done around 5 months of age. She failed the test responding to stimuli, but they did the brain scan test on her and she passed. They did not put her under for it though. I got her to sleep in my arms, and they tested her while she slept. Babbling, speech, etc.... all of that can be delayed in our cleft cuties because of the cleft itself too. To make certain sounds, you need a palate. Sierra only officially "cooed" (vowel sounds only) until she was over a year old. She finally said Mama as her first word. Just now, at nearly 18 months, she is finally babbling "palate sounds" (nanananananananana.... still no dada though, but tongue placement is very similar for nana and dada, so we're hoping for it soon!) Finally, yesterday, she figured out what "No" means, and how to say it (and boy, is she ever making use of her newest word!). Teaching her to sign is a really good idea though..... I'm a big believer in teaching signs to kids. Sierra uses 5 signs regularly... I really think it's helped to unlock language for her. Anyway, I will definatly be praying for you guys!