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

Sunday, March 7, 2010

Recent News

I know it's been a while. I'm working a crazy amount of hours every week trying to get things done! So I really haven't had much time to post and when I do, I'm exhausted and say I'll do it later. So here's a recent update all of the kids...

Madison is same old Madison. She is almost 4 in May, can hardly believe it. We are getting her signed up for Preschool in the fall. Hoping she gets in! She is a ball full of energy and little Miss Princess as of late. She wants everything frilly and pink! Very cool but a little annoying.

Owen is learning so many things in Kindergarten. He is learning to read and has learned quite a few site words already. He's like a little sponge! He's doing well in school, all in all. He will start T-Ball here in a few weeks (ANYONE wanna buy a ticket to win 750 dollars?) Just had to plug that in there. :)

Paige...dear Paige. Paige is doing wonderful. She is starting to crawl and eats lots of baby food. She gabs all the time and is just a really sweet baby. She is now putting herself to sleep, which is a blessing. Her lip looks fabulous and it's healed really well. She really is doing great. Except....her ears. We have had to take her to Pittsburgh many times in the last month for a constant ear infection that she has had since October. They keep trying new drops, antibiotics, clean and sucking it out. It's nuts. The poor girl is so used to all of it but it's really no fun at all. This last time, they put a piece of stuff in there that holds the drops in longer. We tried it once before but it fell out the very next day. It has been in there for a few days and she will have it removed on Wednesday. Problem is..if it doesn't get better, we are talking another surgery to have the tube removed. We are not sure yet if they will be replaced but more than likely will. Most cleft babies have tubes for a few years.

Paige's cleft palate surgery is scheduled for May 26th. I'm not really sure if it will happen or not, because she will only be 9 months old and she needs to be off the bottle. So we will see. I have talked to other cleft moms and their child didn't need to be off the bottle, so we will discuss with Dr. Grundwalt in April.

So that's a quick update! I'll update more when we find out more about her ears.

so here's a couple of pics to keep you all happy. :)