Learning Jordan is Deaf
December 22, 2012
Jordan is continuing to gain weight and make great progress. I love this stage where they stare at their fists and follow them with their eyes. He is up to 10 pounds and getting a super cuddly body. I am surprised he gains any weight with how constant his little legs are pumping. He looks like he is riding a bike whenever he is awake. It's pretty cute.
This week Jordan had quite a few doctor appointments. His first was with the ENT who did his tracheostomy. Everything looked great. His tongue is still half paralyzed, but the trach site looked great.
The next day he had his Peg G tube replaced to one they call a Mic Key. It is a lot smaller and designed to be more user friendly and it is harder for him to pull on. Even if he did manage to pull it out it is now something I am trained to replace and put back in. I told you, I should have gone to nursing school to begin with, why did I ever change my major???
The following day we had 2 appointments. The first with the Cardiologist. He had an echocardiogram. It showed that Jordan's hole in his heart is healing. It wasn't 100% but well on its way. We don't have to see him again for 3 years to check up on it. Yay!
The last and hardest appointment was with the Audiologist. Jordan was given two different tests on each ear. He did not have any response in either ear, which means my little boy is totally deaf. That broke my heart. In my heart I really believed he had hearing by the way he responded to me when I talked to him and when I sang to him. The specialist that did the test informed me it was just the vibrations he was responding to. So, in the next couple of months he will get a CT scan and see if his cochleas are normal size; if so he may be eligible for a cochlea transplant down the road.
Here's an interesting fact. In Utero, when the kidney's are developing, so is the hearing. So, when she asked his medical history and found out that he had a small kidney she knew right away that he probably wouldn't have all his hearing. So she tried to prep me before the 2 hours of testing began. But who can prepare you for news like that?
So after a few days of letting it soak in I still cry when I ponder too long, but we are trying to find the good things. So far we are excited to learn a second language as a family (sign language) and I will be able to put my "Signing Time" DVD's that I bought years ago to good use now. And I still have a cute and adorable child who is healthy and strong; I find the most joy in this knowledge and it brings me comfort.
My kids of course do as kids do and have so far handled it really well. I pulled out the DVD's last night and only got only one groan. Mikey responded to this by saying, "Hey, we have to learn it now for Jordan." I know my kids will come through this with flying colors. They had lots of questions but my favorite from Mikey was "Will he still be able to play basketball with me?" The important things of life were covered!!
Ok, so funny! Aaron is sitting here kissing Jordan while I am typing. He just said to me, "Mommy, Mommy, Jordan smiled at me and said Aaron is Awesome!"
Needless to say, its been a rough week. However we have had some wonderful things happen as well. I want to thank those that brought in meals this week. They were really helpful and the timing was perfect. This week we also had the local girl scout group come over and helped around the house and brought several freezer meals that are for the crockpot for my rough days. These beautiful girls raised money, bought the food and prepared the meals. So much love and thought went into those meals. Not only that, they brought some Christmas treats for my kids. Thank you girls!
So far we have learned there are many support groups out there. I know there are some of you that may know more than we do for some of these things we are facing and we are always open to any information you have to share. Once again, thank you all for your support. We sure have needed it!
This week Jordan had quite a few doctor appointments. His first was with the ENT who did his tracheostomy. Everything looked great. His tongue is still half paralyzed, but the trach site looked great.
The next day he had his Peg G tube replaced to one they call a Mic Key. It is a lot smaller and designed to be more user friendly and it is harder for him to pull on. Even if he did manage to pull it out it is now something I am trained to replace and put back in. I told you, I should have gone to nursing school to begin with, why did I ever change my major???
The following day we had 2 appointments. The first with the Cardiologist. He had an echocardiogram. It showed that Jordan's hole in his heart is healing. It wasn't 100% but well on its way. We don't have to see him again for 3 years to check up on it. Yay!
The last and hardest appointment was with the Audiologist. Jordan was given two different tests on each ear. He did not have any response in either ear, which means my little boy is totally deaf. That broke my heart. In my heart I really believed he had hearing by the way he responded to me when I talked to him and when I sang to him. The specialist that did the test informed me it was just the vibrations he was responding to. So, in the next couple of months he will get a CT scan and see if his cochleas are normal size; if so he may be eligible for a cochlea transplant down the road.
Here's an interesting fact. In Utero, when the kidney's are developing, so is the hearing. So, when she asked his medical history and found out that he had a small kidney she knew right away that he probably wouldn't have all his hearing. So she tried to prep me before the 2 hours of testing began. But who can prepare you for news like that?
So after a few days of letting it soak in I still cry when I ponder too long, but we are trying to find the good things. So far we are excited to learn a second language as a family (sign language) and I will be able to put my "Signing Time" DVD's that I bought years ago to good use now. And I still have a cute and adorable child who is healthy and strong; I find the most joy in this knowledge and it brings me comfort.
My kids of course do as kids do and have so far handled it really well. I pulled out the DVD's last night and only got only one groan. Mikey responded to this by saying, "Hey, we have to learn it now for Jordan." I know my kids will come through this with flying colors. They had lots of questions but my favorite from Mikey was "Will he still be able to play basketball with me?" The important things of life were covered!!
Ok, so funny! Aaron is sitting here kissing Jordan while I am typing. He just said to me, "Mommy, Mommy, Jordan smiled at me and said Aaron is Awesome!"
Needless to say, its been a rough week. However we have had some wonderful things happen as well. I want to thank those that brought in meals this week. They were really helpful and the timing was perfect. This week we also had the local girl scout group come over and helped around the house and brought several freezer meals that are for the crockpot for my rough days. These beautiful girls raised money, bought the food and prepared the meals. So much love and thought went into those meals. Not only that, they brought some Christmas treats for my kids. Thank you girls!
So far we have learned there are many support groups out there. I know there are some of you that may know more than we do for some of these things we are facing and we are always open to any information you have to share. Once again, thank you all for your support. We sure have needed it!
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