Thursday, October 24, 2013

Our Second Trip to Cincinnati Children's Hospital

Okay this WILL be long, just a fair warning. Landon went to Cincinnati Children's hospital today to have two tests done (we thought three but only two were ordered) and to see his doctor, Dr. Choo. Landon had an ultrasound and CT scan. The ultrasound of his kidneys came back perfect and the reason they do this is because the kidneys and ears form at the same time in womb. They did the ultrasound just to make sure nothing was wrong with his kidneys and to rule out any further problems. The CT scan of his head/inside his ear, which was the biggest test and worry of mine. The doctor said on a scale of 1-10 with 1 being the worst and 10 being best, Landon's CT scan came back as a 6. This means if Dr Choo surgically fixed what is wrong on the inside of Landon's ear Dr. Choo said it would give Landon a 50% or 60% chance of hearing out of that ear, which isn't bad but that means it may not work. The chance of it not working is 40%. What exactly is wrong with Landon's ear? Dr. Choo said we all have 3 parts to our ear. We have our inner ear which has our cochlear which connects nerves to the brain so we can ear. Landon's inner ear is perfect (which is why Landon can hear out of his right ear but it is just muffled). Put your hand over one ear, that is how Landon hears but a little less than that. We have our outer ear which we know Landon's outer ear is deformed and folded in. The third part is the middle ear. The middle ear has three bones (stapes, incus, and malleus) and the eardrum. Landon has no eardrum in his right ear and the three bones are there but not formed right. Are we going to have Landon get surgery? My husband and I talked about this on the way home. At the start of all of this we thought sure let's get the surgery as soon as possible so Landon isn't made fun of in school. Today, our minds were changed. We decided we want to wait on any surgery until Landon is old enough (7-10 years of age) to decide if he even WANTS the surgery. Why force a surgery on a child who may perfectly content with how his ear is. So then how will his hearing be fixed you ask? There is a hearing device called the BAHA (Bone Anchored Hearing Aid). We were a little confused on it but I did some research as soon as I hit the door and Landon would have surgery to get the device implanted but then he will wear a small device on the outside (this can't even take place until he is at least 5 years old). For now, he can wear a BAHA soft headband which looks like a headband. As far as the surgery to fix the inside of his ear, we aren't sure since there is a risk of it not working by 40%. The BAHA headband he can wear all the way into adulthood if he decided he doesn't want any surgeries. HOWEVER, I believe that my husband and I may not be 100% with this decision which is why we are taking advice and opinions and we will keep researching and asking questions. We don't have to decide anything today. The only thing we have to do is get Landon the soft headband as soon as we can. 
Below are links to more information (some of it is repeated) and pictures of what our ear looks like so you can better see what I am talking about. A picture of what the soft headband looks like. Also below is a picture of Landon from yesterday waiting for his CT scan. 

Landon has Grade III Microtia

Information about Microtia as a whole:

More information about the surgery that could be possible with Landon:

Here is info about the implant which he cannot get until he is 5:
This is what Landon can get NOW to help his hearing until 5 or whenever he choose he would want surgery to either correct his hearing or to implant a different BAHA system. :

Our next appointment will be with the audiologist for what I am assuming will be a fitting for the BAHA soft band since that is our only option while he is this young. We are hoping to get in ASAP. His next appointment with Dr. Choo will be in April. For now, he wants to see Landon every 6 months. Also, I have already contacted the early intervention specialists in our area (we used them for Logan for speech therapy and occupational therapy) so we are familiar with them and know the people that would be working with Landon. We also are going to look into signing and learning to sign/teach signing to Landon to help his communication and development. Ultimately I just want to do all I can for him so that he can succeed in life. I don't want to treat him as if he is 'special needs'. Because there are people that are adults with this condition and the are just like you and me.
After the doctor appointment yesterday two of my favorite worship songs came on the radio, 'Everlasting God' by Chris Tomlin: and '10,000 Reasons' by Matt Redman: Even before Landon was born I knew in some way he would be a fighter. He fought with me when I was sick with my Crohns Disease when I was pregnant with him (I had a hard believing he would survive me being so sick) but he did. Then he fought for his health in January. Now, he is going to fight for his hearing. Right now, I am his only advocate along with Rob. It is up to us to help him fight. The two worship songs remind me God is with me. He is giving Rob and I the strength to parent this beautiful boy. He is giving us the strength to parent two crazy at times but yet so sweet boys. I praise God for this blessing that I take for granted because it is a blessing many dream of. Another song I heard yesterday was, 'One Thing Remains': Through it all, the mistakes, the troubles that come our way, through the good and bad news, God never gives up on us. Rob and I will never give up on our kids. Becoming a parent we knew there could be a ton of things either of our children could have been born with and we know there could be accidents that could cause things to go wrong, we won't give up no matter what happens because God never gives up on us.

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