A blog to the world who might see a fraction of the joys and challenges of raising a miracle baby! Carter was born with Congenital Hydrocephalus & Macrocephaly in November 2007. He was also diagnosed with Cortical Vision Impairment and Hearing Impairment. Doctors said there was little hope for a full life...well we'd like to show the world what a full life looks like! We have triumphed over many obstacles, yet have many more to face. This is our story.
Sunday, May 16, 2010
2010 Carter Shields Open
Its getting warmer and plans are underway for Carter's 2nd Annual Golf Tournament here in Tooele. It will be held on July 31, 2010. We have chosen Oquirrh Hills Golf Course. If you are interested in playing, donating, sponsoring a hole or donating a raffle item please email us at hydroinutah@gmail.com. We also desperately need all those wonderful volunteers that made last year possible. Proceeds will go to Hydrocephalus research to help families like ours have a better life and someday possibly ending this debilitating condition. Thank you for your support. See you on the course!
Sunday, May 9, 2010
Hydrocephalus vs Hearing Loss
Since birth, Carter hasn't ever been able to pass a hearing test. At 6 days old the hospital gave Carter a hearing test and he failed. They came back with a more intense hearing test which he also failed. The hospital staff said "Carter is deaf, he'll be deaf forever, we're sorry" and left the room. It was heartbreaking, we were prepared for deaf but oh how we weren't prepared to hear those words for real.
So we took home our deaf newborn and we treated him like he was deaf, he really never responded those early days like he could hear. Then our wonderful home health nurse (who has worked with Hydro babies for 20 years) came in and I cried to her about being deaf, she said "he's probably not deaf, every Hydro baby I've ever worked with starts out that way until their pressure is under control" that was hopeful news but we still thought he'd probably be deaf forever.
At about 3 weeks old, I yelled down the stairs to Jordan while Carter was asleep in the next room and he startled awake, we just thought maybe he felt the vibrations. After that he would startle at any loud noise and a few weeks later he was responding to even a quiet voice. We had proof that he WAS NOT DEAF. But to this day Carter can't pass a hearing test.
Carter's been through all the hearing tests: AOE, BEAR, booth, sedated, non-sedated, blah blah and he fails all. So on his medial record says "profound deafness" but Carter can obviously hear. He responds to everyone who speaks to him, he looks to his name, he copies some words, he loves music. He dances to music that I don't talk about, he can hear.
So last week his ENT took him into surgery for Tubes. He said that is the first step to rule out any fluid. (lets face it, fluid is usually the problem). His surgery went well, they scheduled him to stay the night for observation because he usually dies during surgery. But this time it went better then expected. He was on his way home 1 and a half hours after the surgery. Wahoo!
So next step...another hearing test. If he doesn't pass that then he'll have to get hearing aids. If then he doesn't pass then he'll have to get implants. I'm extremely against implants because it destroys any and all natural hearing that he has. The ENT said that he cant hear at all, but I strongly disagree. Everyone who knows him strongly disagrees as well. So stay tuned for the implant battle.
Hydro Mom Tip: As a newborn Carter come out deaf because of the pressure. The more people I talk to, the very common this is. A lot of our little hydro friends have grown out of it or only need hearing aids. I am so glad we didn't get implants like we were advised from our audiologist.
So we took home our deaf newborn and we treated him like he was deaf, he really never responded those early days like he could hear. Then our wonderful home health nurse (who has worked with Hydro babies for 20 years) came in and I cried to her about being deaf, she said "he's probably not deaf, every Hydro baby I've ever worked with starts out that way until their pressure is under control" that was hopeful news but we still thought he'd probably be deaf forever.
At about 3 weeks old, I yelled down the stairs to Jordan while Carter was asleep in the next room and he startled awake, we just thought maybe he felt the vibrations. After that he would startle at any loud noise and a few weeks later he was responding to even a quiet voice. We had proof that he WAS NOT DEAF. But to this day Carter can't pass a hearing test.
Carter's been through all the hearing tests: AOE, BEAR, booth, sedated, non-sedated, blah blah and he fails all. So on his medial record says "profound deafness" but Carter can obviously hear. He responds to everyone who speaks to him, he looks to his name, he copies some words, he loves music. He dances to music that I don't talk about, he can hear.
So last week his ENT took him into surgery for Tubes. He said that is the first step to rule out any fluid. (lets face it, fluid is usually the problem). His surgery went well, they scheduled him to stay the night for observation because he usually dies during surgery. But this time it went better then expected. He was on his way home 1 and a half hours after the surgery. Wahoo!
So next step...another hearing test. If he doesn't pass that then he'll have to get hearing aids. If then he doesn't pass then he'll have to get implants. I'm extremely against implants because it destroys any and all natural hearing that he has. The ENT said that he cant hear at all, but I strongly disagree. Everyone who knows him strongly disagrees as well. So stay tuned for the implant battle.
Hydro Mom Tip: As a newborn Carter come out deaf because of the pressure. The more people I talk to, the very common this is. A lot of our little hydro friends have grown out of it or only need hearing aids. I am so glad we didn't get implants like we were advised from our audiologist.
Subscribe to:
Posts (Atom)