Showing posts with label Pfeiffer Syndrome. Show all posts
Showing posts with label Pfeiffer Syndrome. Show all posts

February 2, 2011

His BAHA is snapped on!!!

It's been 5 months since we began this final stage of C's hearing aid journey and finally, he is able to wear his BAHA (bone anchored hearing aid) snapped on to his head! The first phase of this process began back on September 2, 2010 when his Otolaryngologist, Dr. Perkins, drilled two posts into the mastoid bone behind C's left ear...one for his BAHA and one as a back up, should he ever need it (hopefully not!) Then in October we received his BAHA to wear on a strap, much like the way he was wearing his previous bone conduction hearing aid. The difference was amazing! C could hear things he had never heard before...like whispering, pages turning when reading a book, words that he had never understood because they weren't heard in context suddenly had meaning, and his comprehension and vocabulary seemed to increase dramatically. Then on December 21, 2010 we went back to the hospital for the second phase of his surgery. Dr. Perkins attached the abutment (AKA snap) to the post.

We waited for another month and finally on January 26th, we went back to see Dr. Perkins. C was ready for his hearing aid strap to come off and the BAHA to be snapped on. Silence filled the room as we waited for C's reaction. I've never seen him quite that way before. I was expecting some magical moment where he would say that everything sounded so much better and his face to light up. That's not at all what happened. He remained quite stoic as his doctor snapped on his BAHA and asked him, "C, how is that...can you hear OK?" We had been told that the difference going from wearing his BAHA on the strap and it being snapped on to his head would be about a 20-25 decibel increase. That's pretty big!

As C looked at the floor just starring, he nodded that it sounded alright. He answered our questions with nods, but nothing else. Hmmmmm...I wondered if maybe he was experiencing sensory overload. After all, this is supposed to provide him with the best hearing possible for his type of hearing loss.

Once we were back out in the waiting area of the hospital, C definitely perked up. In fact, I could barely grab his attention because he was so enthralled with all of the activity and sounds around him. There's a Starbucks in the patient waiting area....so nice...anyway, C commented that he could hear the people talking "way over there". I was amazed because we were fairly far away and the espresso machines were making some loud noises and STILL, he could hear people talking. A sigh of relief and excitement washed over me. What a happy day!!!

After a visit to see our Audiologist, Nicole, we discovered that there was an increase of 23 decibels over wearing the BAHA on his strap. Awesome! We're still unsure of the exact increase between aided and un-aided, as C was a bit squirrely and wanting to play games in the sound proof booth wear they test his hearing. Basically, he was so OVER this whole process....tired of the all the tests and the process of gaining better hearing. He just wanted to be done. So...we are done! He hears better now than he ever has in his whole life. We know that for sure! He seems to love his BAHA and we are seeing subtle positive changes in the way he responds to people. There seems to be more of an awareness and a peace within him. Praise God! We've been praying for this day since C was born!

Here is C's hearing aid journey in pictures....

This is C with his behind the ear hearing aids and just before his mid face advancement surgery in Sept. 2009.

C with his bone conduction hearing aid Fall 2010.

C with baby brother E wearing his BAHA on the softband strap Nov. 2010.

Minutes after snapping his BAHA on for the first time.

Very much involved in watching everyone around him. The waiting room area was very noisy.

Yes, I'm still taking pictures of you!

My second favorite part about C having his BAHA on is that now he will no longer have to wear a softband strap on his head. It never bothered him and we certainly weren't ever bothered by the appearance of it, but we love seeing his sweet face and head without the additional "gear". We also know he is much more comfortable without it.

December 24, 2010

2nd BAHA Surgery

C had his second (and final) BAHA surgery this week. After 3 months of healing, his ENT exposed one of the posts behind his ear and added the abutment (like a snap). This will be what the actual hearing aid processor will attach to. C did really well with surgery and was even able to come home the same day. This was a big deal for all of us as it's the first surgery of 8 that didn't require at least an overnight stay. Normally a surgery like this IS just a day surgery, but C's airway is always an issue. So, this time we and Dr. Perkins agreed that an even smaller tube be used for intubation. They've always used a smaller tube, but this one was even smaller. And it worked!!! He only had mild croup after surgery and no troubles breathing. Praise God!!! The plan now is to let the surgery site heal for another month and if all looks well then we can attach the BAHA directly to the post without his strap. We are so excited as this will provide even better hearing for C.

Giving Daddy a thumbs up!!

There's that smile.

Yes, I'm ready to go home NOW!


This is the healing cap that will keep the surgery site protected for the next few weeks. Under it is about 9 inches of gauze wrapped around the post as well...that's what you see sticking out around the exterior of the cap.
The cap is actually screwed right on to the post and abutment anchored to C's mastoid bone. This will come off at our next appointment in January. Then only 2 more weeks of healing and we're done with this part of the process. Then the BAHA will be fitted and adjusted to C's hearing needs. Can't wait!!!

December 18, 2010

Baha Update

October 23rd, 2010

Soooooo, its been almost 2 months…C had the first phase of his BAHA surgery and it went very well. As always, he was such a trooper. We weren’t quite sure what to expect with regard to when he’d actually be able to wear his new BAHA. For the first 5 weeks, while healing, he wore his old hearing aids. Then we were surprised to receive a call from our Audiologist letting us know that it was OK for C to begin wearing the BAHA on a softband while waiting for the second phase of the surgery.

Just before surgery with Dr. Daddy, me and little E.

The next day. C wore this Mastoid Bone wrap to keep the bandages in place.

Surgery site. There are two posts under his skin...one will be the anchor for his BAHA and the other is a backup if the first ever fails.

And here is the BAHA snapped onto his nice blue softband. High Tech!!

Looks a lot like his old hearing aid, huh?!

Reading with big brother, O.
So far C loves his new BAHA. It’s hard to tell right now how much better he hears with it vs. the old bone conduction hearing aid. But, he likes it. That’s huge! His next surgery is scheduled for Dec. 21st. That surgery will be to expose one of the posts and attach the abutment (like a snap for the actual BAHA to snap onto). Once that is done and he is all healed up, THEN the BAHA process will be complete and C can wear it the way it should be worn. We are so excited about this! There are so many options available with this aid and lots of technical hearing adjustments that can be done by his Audiologist to enhance C’s hearing for different situations (like crowded places where it might be loud) and calibrated it according to his hearing needs. I love how programmable it is.
I was able to test his BAHA by plugging my ears and placing it against the Mastoid bone behind my ear and was very impressed with the sound quality. We’re hoping and praying C loves it when all is said and done!

BAHA Surgery Day

September 1st, 2010 

In 13 hours we will, again, be checking in to Children’s Hospital. Tomorrow is a day we’ve all been looking forward to for quite some time. Seems strange to think that exactly one year ago today, our brave son, C underwent the most difficult surgery of his life to date…his midface advancement. And today he is doing SO well and thriving in every area of his life. We are so thankful to God for this miracle.
Tomorrow’s surgery will be a much more minor surgery, relative to the last one. He’s getting his BAHA. That stands for Bone Anchored Hearing Aid. We are all very excited, especially C. He doesn’t even seem nervous or scared, just excited! C is on a “need to know” basis about pretty much everything. We think this has alot to do with his hearing loss and the necessity that comes with needing to know what comes next and the processes of everything. It’s also just part of him and his personality. So, he’s asked alot of questions about tomorrow and we’ve answered them truthfully. He knows he’ll go with the doctors, they’ll help him go to sleep and he’ll wake up with a little bit of pain but the medicine they give him will help take that away. We’ve also explained the BAHA and it’s components, looked at pictures online and he knows that a “post” will be put in to the skin and bone behind his right ear. He understands that there will be a long period of healing while his bone ossifies…which means the actual hearing aid will not be placed onto the post for at least 6 weeks, possibly up to 3-6 months. (we’ll see….his bones heal quickly….we know that from his last surgery!) And while he’s healing, he will either wear his current hearing aid or possibly the old ones he used to wear. We won’t know until post-op. He seems OK with all of this. With each surgery, there is a lot more understanding and communication involved. I’m so thankful for the way God created C’s heart and spirit to handle these challenges in his life.
We’ll only be at the hospital overnight and then home Friday. To read more about the BAHA, you can go to the Cochlear website. The BAHA is made by Cochlear and the one C is receiving is the most technologically advanced of it’s kind to date. Again, another blessing that this is the one he is eligible to receive. Most children cannot (or don’t) get to take advantage of this technology until after the age of 5 because it is not technically FDA approved in the US before age 5. Our ENT said that there was no reason to wait and that he could override the FDA. He’s healed well from the last surgery and thinks that this hearing aid will enhance his life greatly…better for him to receive it as early as possible while language, speech and communication are still developing. We are prayerful and hopeful that the BAHA will do everything we’ve heard it will do for C.
But for now, we are praying for things in the immediate future…a clear path to the hospital tomorrow morning so we can get there on time, a safe drive in, for the doctors performing C’s surgery, that their hands would be steadily guided by God and wisdom used every step of the way. We are praying that C would handle sedation well (as he always has), that the pain afterward would be minimal and he would wake up still understanding that there will be some enduring to go through before he can actually wear his new BAHA, but that he remains excited for what’s ahead. We’re praying that there will be no infection post-op and that the recovery time is easy and uneventful.
We’ll update soon to let everyone know how our little man is doing.
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