Thursday, June 3, 2010
Just another day
Our hearing battle is over! Carter was put under general anesthesia today and given 2 extensive hearing tests. He was given a sedated BAER and OAE and passed with flying colors. The audiologist said his hearing was in the normal range in both ears. So no hearing aids and no implants, what a blessing! So why couldn't he pass a hearing test? Maybe because he's 2? Maybe because he doesn't like probes in his ears? Maybe because he can't sit still that long? Anyways we may never know. Here he is just waking up.
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.
Tuesday, March 23, 2010
My Amazing Walking Little Man
Our little man is Walking! Carter has far exceeded the expectations that his doctors have
labeled him with. This milestone which is “unreachable” by definition of most. He has defied his odds! The celebration which most take for granted. What a miracle! A child who “would never walk”. This is definitely a renewed hope and strength and maybe, my labeled child just might defy many more odds. So we will continue to dream, love and share. Maybe this may help another, one who has been told to expect nothing to have hope and courage to keep expecting. Carter’s challenges make his triumphs greater and often his weaknesses are accompanied by amazing strengths. Let this be a lesson for me not to take these little things for granted for those little things are the things that matter the most.
Monday, February 1, 2010
Riddle
What do you get if a 2 year old...with special needs...with life threatening condition just needs a few stitches?
2-Anesthesiologist
3-Respiratory Therapists
4-Several ER Nurses
5-A tricky Sedation method
6-A few thousand dollar ER bill (not to mention a pissed off 2 year old)
I guess if we pray for a 'normal' boy thats what we will get. We decided to skip out on church on Sunday and have a relaxing day, well little Carter fell on the corner of our bed and split his bottom lip open. We knew by the amount of blood and how open his lip was that it could use a couple of stitches but we didn't know how anyone was going to get those in. If you follow baby Carter's story we know that he cannot be sedated or he goes into full respiratory arrest with most of the narcotics and sedatives. So our cute ER attending was beside herself not knowing what to do. She decided to try Ketamine (a sedative that doesn't make you loose consciousness). Well, it was quite the production for just 4 stitches.
1- Several ER Attendings
2-Anesthesiologist3-Respiratory Therapists4-Several ER Nurses5-A tricky Sedation method6-A few thousand dollar ER bill (not to mention a pissed off 2 year old) I guess if we pray for a 'normal' boy thats what we will get. We decided to skip out on church on Sunday and have a relaxing day, well little Carter fell on the corner of our bed and split his bottom lip open. We knew by the amount of blood and how open his lip was that it could use a couple of stitches but we didn't know how anyone was going to get those in. If you follow baby Carter's story we know that he cannot be sedated or he goes into full respiratory arrest with most of the narcotics and sedatives. So our cute ER attending was beside herself not knowing what to do. She decided to try Ketamine (a sedative that doesn't make you loose consciousness). Well, it was quite the production for just 4 stitches. Sunday, January 17, 2010
2 Years Old!
Its been a crazy holiday season for us, which explains the lack of updates, so we're playing catch up. Carter is now 2 Years Old, he turned 2 on November 20th. It was such a great day for our family. I'm sure all you Hydro families know what a big milestone a birthday is!
We also had another big milestone, on January 9th we celebrated a shunt anniversary. Our shunt has lasted 2 whole years, not bad for a recalled shunt.
Here are some pictures from our birthday, I'll let Carter narrate...
This might explain why we go to Feeding therapy and why we focus on texture therapy.
Smell test
Who doesn't like birthday cake? ME!
I was reminded this was a "fun" day
We also had another big milestone, on January 9th we celebrated a shunt anniversary. Our shunt has lasted 2 whole years, not bad for a recalled shunt.
Here are some pictures from our birthday, I'll let Carter narrate...
This might explain why we go to Feeding therapy and why we focus on texture therapy.
Smell test
Who doesn't like birthday cake? ME!
I was reminded this was a "fun" day 
I am big drinking from a big boy cup
Monday, December 21, 2009
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