I must apoligize first, this is a really long post. I actually cut it down a lot, but it's still pretty long. So if you read the whole thing, thanks for hanging in there!
Who really knows what those cranial nerves do (unless you are a Dr)? I certainly had no clue exactly what they did. I knew we had 12 pairs of them and I knew they were in the head, but I really didn't know exactly what they controlled. Thank you to Sadie (she is the best teacher), I now can tell you each of the cranial nerves and exactly what they do.
It began while we were in the NICU. At first we didn't see it, but as a day or two went by we got our first glimce that there was more going on then her heart and cerebellum.... First she had the CPAP on, so we couldn't see her whole sweet face. Luckily, that was discontinued within the first 12 hours or so. Next, Sadie wouldn't eat/suck. So they inserted a feeding tube into her nose and taped it acrossed her face. Again, we couldn't see her whole sweet face. That is how I saw her everytime we went to go see her. One early morning I went down to the NICU to do all her morning care and Miss Sadie was restless. She pulled that tube right out of her nose. Who could blame her? She calmed down and fell right to sleep in my arms. I stared and stared at that sweet face, falling more and more in love. First time I saw her whole little face (her head was only the size of a large orange). And then she cried, something wasn't right. At first I thought it was my imagination and then she cried again. I then started freaking out. I called her nurse over and told her I thought she was having a stroke. Demanded a CT or an MRI and to call the stroke team. Her right side of her face wasn't moving when she cried. Her eye wasn't blinking appropraitely. The side of her mouth wasn't moving. I started balling my eyes out. The RN put her arm around me and gave me a squeeze and said that she wasn't having a stroke. She has been like this since she was born. What!? How did I not notice and what was wrong with her if it wasn't a stroke? I also noticed during this same little episode that her cry was very quite and her voice was very hourse. No one could give me any answers but they did reassure me that she didn't have a stroke.
After we were released from the NICU and we went home I gave her a real bath for the first time. I accidently got water in her eyes. She didn't really seem to care. Good, I thought, at least she is one tough little cookie and doesn't cry about water in her eyes. Well, come to find out later when we went to the opthamologist she has no feeling in her eyes. You can touch them, and put eye drops in and blow on them and she doesn't even flinch. Weird! She doesn't really blink appropriately either. You can't tell unless you sit and stare at her for a while. So needless to say we had to start her on an eye regiman where we clean them and put eye drops in several times a day cause she is unable to clean them and keep them moist on her own.
Then came her hearing issue. We knew when she was in the NICU that she failed her hearing screen. So they ordered a more intense test, a BAER test. She failed the first, she failed the second. They then ordered a sedated, comfirmative BAER test. That is when it was confirmed that she has auditory neuropathy (deaf).
Then came time for her to start trying to eat oral foods. As I was giving her different tastes of the foods she was making no faces, like babies make when they taste foods for the first time. Hmmm. Thats a little strange. Then I was mentioning this to one of her Dr's and I also said I wonder if she can smell. So we tested her by putting an ammonia stick under her nose. She didn't even budge. Hmmmm. Again that's starnge.
As I am mentioning all these things to different Dr's they all say "oh that's cranial nerve number _". Slowly, I started hearing all 12 cranial nerves named. Each time they added a nerve they would also add "this is very rare to have this". I eventually started to expect the words "rare and unique" at the end of all her Dr appts.
So pretty much all of her senses (except touch) are screwed up, at least on that right side. Well, technically smell and taste are guesses, but thats the way things are seeming to lean.
What is the reason behind the cranial nerve issue? That's a darn good question. I can not seem to find a Dr that really cares enough to look into what the problem really is (don't worry I'm still on the search for one). This is the Dr's best answer... her cranial nerves mainly start in the area of where her pons is on her brain stem which they are guessing that since this area is underdeveloped that means her cranial nerves must be underdeveloped too. So for now I am excepting this answer until I can find a Dr that cares enough to actually look into it further. The reason that they give me for not looking more into the issue is that since you can't do anything to fix cranial nerves, why look for the problem. I don't like this answer, I'm still searching.
So that is a short lesson on cranial nerves. They effect hearing, facial movement, swallowing, voice box, eye reflexes, smelling, tasting. And there is much more that they do but that is the run down on what seems to be effected on Sadie. God bless this little girl.
Who really knows what those cranial nerves do (unless you are a Dr)? I certainly had no clue exactly what they did. I knew we had 12 pairs of them and I knew they were in the head, but I really didn't know exactly what they controlled. Thank you to Sadie (she is the best teacher), I now can tell you each of the cranial nerves and exactly what they do.
It began while we were in the NICU. At first we didn't see it, but as a day or two went by we got our first glimce that there was more going on then her heart and cerebellum.... First she had the CPAP on, so we couldn't see her whole sweet face. Luckily, that was discontinued within the first 12 hours or so. Next, Sadie wouldn't eat/suck. So they inserted a feeding tube into her nose and taped it acrossed her face. Again, we couldn't see her whole sweet face. That is how I saw her everytime we went to go see her. One early morning I went down to the NICU to do all her morning care and Miss Sadie was restless. She pulled that tube right out of her nose. Who could blame her? She calmed down and fell right to sleep in my arms. I stared and stared at that sweet face, falling more and more in love. First time I saw her whole little face (her head was only the size of a large orange). And then she cried, something wasn't right. At first I thought it was my imagination and then she cried again. I then started freaking out. I called her nurse over and told her I thought she was having a stroke. Demanded a CT or an MRI and to call the stroke team. Her right side of her face wasn't moving when she cried. Her eye wasn't blinking appropraitely. The side of her mouth wasn't moving. I started balling my eyes out. The RN put her arm around me and gave me a squeeze and said that she wasn't having a stroke. She has been like this since she was born. What!? How did I not notice and what was wrong with her if it wasn't a stroke? I also noticed during this same little episode that her cry was very quite and her voice was very hourse. No one could give me any answers but they did reassure me that she didn't have a stroke.
After we were released from the NICU and we went home I gave her a real bath for the first time. I accidently got water in her eyes. She didn't really seem to care. Good, I thought, at least she is one tough little cookie and doesn't cry about water in her eyes. Well, come to find out later when we went to the opthamologist she has no feeling in her eyes. You can touch them, and put eye drops in and blow on them and she doesn't even flinch. Weird! She doesn't really blink appropriately either. You can't tell unless you sit and stare at her for a while. So needless to say we had to start her on an eye regiman where we clean them and put eye drops in several times a day cause she is unable to clean them and keep them moist on her own.
Then came her hearing issue. We knew when she was in the NICU that she failed her hearing screen. So they ordered a more intense test, a BAER test. She failed the first, she failed the second. They then ordered a sedated, comfirmative BAER test. That is when it was confirmed that she has auditory neuropathy (deaf).
Then came time for her to start trying to eat oral foods. As I was giving her different tastes of the foods she was making no faces, like babies make when they taste foods for the first time. Hmmm. Thats a little strange. Then I was mentioning this to one of her Dr's and I also said I wonder if she can smell. So we tested her by putting an ammonia stick under her nose. She didn't even budge. Hmmmm. Again that's starnge.
As I am mentioning all these things to different Dr's they all say "oh that's cranial nerve number _". Slowly, I started hearing all 12 cranial nerves named. Each time they added a nerve they would also add "this is very rare to have this". I eventually started to expect the words "rare and unique" at the end of all her Dr appts.
So pretty much all of her senses (except touch) are screwed up, at least on that right side. Well, technically smell and taste are guesses, but thats the way things are seeming to lean.
What is the reason behind the cranial nerve issue? That's a darn good question. I can not seem to find a Dr that really cares enough to look into what the problem really is (don't worry I'm still on the search for one). This is the Dr's best answer... her cranial nerves mainly start in the area of where her pons is on her brain stem which they are guessing that since this area is underdeveloped that means her cranial nerves must be underdeveloped too. So for now I am excepting this answer until I can find a Dr that cares enough to actually look into it further. The reason that they give me for not looking more into the issue is that since you can't do anything to fix cranial nerves, why look for the problem. I don't like this answer, I'm still searching.
So that is a short lesson on cranial nerves. They effect hearing, facial movement, swallowing, voice box, eye reflexes, smelling, tasting. And there is much more that they do but that is the run down on what seems to be effected on Sadie. God bless this little girl.
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