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Pre-Cochlear Implant meeting 1 and 2....
- Jun 13, 2009 at 5:28 PM
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Ok, so in order for Gunner to get his implant, we have had to go through a multitude of steps to prove not only he is a candidate but also to prove that we are completely involved and dedicated to this for Gunner. We have had this test and that test done and many more to come. So far Gunner has been put to sleep 4 times. 2 of those times were to do an ABR test on his hearing and the other 2 times were for a CT scan and a MRI. It seems as if every time we get close to the end of the list they throw something else at us.
In the beginning the already mentioned tests along with 2 full physicals and a Meningitis vaccination( which is normally not given until the age of 11 and he HAD to have it at 3 years of age). Our hopes were so high that we would finally have the pre-op appointment in April...well it is now mid-June. Since April the insurance companies and specialists have rewritten the rules. Gunner has also had to have a psychological evaluation, a speech evaluation,a genetics evaluation(which looks like we will be dealing with for a long time) and a multitude of doctor visits to this doctor and that doctor. None of this includes normal doctor visits or the future ones we are still waiting on the referrals to go through for (speech and occupational therapy).
The speech evaluation specialist jumbled our words and in her report made us look like we weren't doing what we were supposed to be doing for Gunner. Which has totally pissed me off and I can't even stand to hear the woman's name without seeing red. So now I have to write a rebuttal against her evaluation as well as have Gunner's teacher's and Daycare providers write one as well.
So, anyway, we go to the first of six appointments for the pre-cochlear implant classes on Friday June 6th. We were running a little late due to traffic (we live an hour and a half away), and when we got to the hospital, we had no clue where to go and was sent to this floor and that floor. When we got there Gunner was so wound up from being in the car for so long that all he wanted to do was run off some energy. The nurse seemed to be okay at first. Gunner and her began to butt heads but she still managed to get him to do what she wanted so she could see where he was. He did awesome! We were so proud of him. She sends us home with homework for the week which basically was sounding the sounds for; aaaa, ooooo, ssssssssss, shhhhhhh, and eeeee, and having Gunner respond to the sound he hears as well as mimic that sound. We practiced daily with him and he did great.
Then there was the the second visit on Friday, June 12th. We were supposed to originally go to the other hospital at 10am to have new ear mold impressions made as he has already outgrown his and then go have blood drawn for the genetics test Connexion 26 and 30.
We left 2 hours early only to run into a traffic Jam that made us late for the 10 am appointment and blood work. We decided to reschedule those so we wouldn't be late to the Pre- Cochlear class. We made it to the second children's hospital 30 minutes early...great! Gunner was able to run around and burn off some of that energy before it was his turn. We had also been working on getting Gunner to focus more the past week and pay attention better as well as follow directions and he did awesome. The nurse walks out and Gunner's little face turned south...he obviously doesn't like her either but we still talked him into going with us and playing(she called it). The first half of the meeting was spent talking to us about the speech therapists recommendation that we have to do before he can get implants and OMG I was livid. Once again it was never up to her(so I thought) whether or not he would get the implant or not. Anyway's I was still comfortable with the recommendations because we had been following through with all of them. Until she mentioned he HAS to have a Occupational therapy evaluation as well as speech therapy. I wasn't aware those things had to be done but we had been(and still are) in the process of getting him in to the right doctors. He was receiving those services at his school until summer vacation started. I guess their findings (at school) aren't enough! Grrrr....
Ok discussion with us (me and Dave...my fiancée) and now it is time for Gunner to work! He wanted nothing to do with it at all. These classes are to prepare him for all the tests they will do after he is implanted. She threatened time out twice (which we do not call it that we call it time to think) and he wanted nothing to do with her period at that point. So, I then took my necklace off and let Gunner wear it as long as he did his work. He then sat down and started to do what she asked...he got bored of that very quickly but he knew what she was asking and was tired of it. She then moved on to a new game...which included rolling a car when he hears the sound and stopping when he doesn't hear it...he was so into the car rolling that he missed the point totally. Then she got out play dough and asked him what the shapes (animals) were and he tried to sign the correct ones and did what she asked. He did awesome at this game. Next was putting the car on the short sound or the long sound picture....he totally failed it...I don't think he got it at all.
So basically our homework this week is to work on these tasks for the next visit. Today we did that. We worked on them and he did much better. Instead of using the car we used a balloon and he did great! He still wasn't sure about the pictures for the short and long sounds but we have all week to get them figured out.
I guess I get aggravated too easily sometimes. We are constantly working with him and Hayleigh with flashcards that show the English and Spanish word on the picture side and the sign language sign on the back. As well as working on his behavior modification, teaching him to listen and sound off the sounds we make and not to mention all the other things we have invested in to teach him. Along with working long hours to make ends meet and taking care of the house and the family...I'm tired of hurrying up and waiting! I just hope by next weeks visit I still have hair left to brush in the mornings LOL!
In the beginning the already mentioned tests along with 2 full physicals and a Meningitis vaccination( which is normally not given until the age of 11 and he HAD to have it at 3 years of age). Our hopes were so high that we would finally have the pre-op appointment in April...well it is now mid-June. Since April the insurance companies and specialists have rewritten the rules. Gunner has also had to have a psychological evaluation, a speech evaluation,a genetics evaluation(which looks like we will be dealing with for a long time) and a multitude of doctor visits to this doctor and that doctor. None of this includes normal doctor visits or the future ones we are still waiting on the referrals to go through for (speech and occupational therapy).
The speech evaluation specialist jumbled our words and in her report made us look like we weren't doing what we were supposed to be doing for Gunner. Which has totally pissed me off and I can't even stand to hear the woman's name without seeing red. So now I have to write a rebuttal against her evaluation as well as have Gunner's teacher's and Daycare providers write one as well.
So, anyway, we go to the first of six appointments for the pre-cochlear implant classes on Friday June 6th. We were running a little late due to traffic (we live an hour and a half away), and when we got to the hospital, we had no clue where to go and was sent to this floor and that floor. When we got there Gunner was so wound up from being in the car for so long that all he wanted to do was run off some energy. The nurse seemed to be okay at first. Gunner and her began to butt heads but she still managed to get him to do what she wanted so she could see where he was. He did awesome! We were so proud of him. She sends us home with homework for the week which basically was sounding the sounds for; aaaa, ooooo, ssssssssss, shhhhhhh, and eeeee, and having Gunner respond to the sound he hears as well as mimic that sound. We practiced daily with him and he did great.
Then there was the the second visit on Friday, June 12th. We were supposed to originally go to the other hospital at 10am to have new ear mold impressions made as he has already outgrown his and then go have blood drawn for the genetics test Connexion 26 and 30.
We left 2 hours early only to run into a traffic Jam that made us late for the 10 am appointment and blood work. We decided to reschedule those so we wouldn't be late to the Pre- Cochlear class. We made it to the second children's hospital 30 minutes early...great! Gunner was able to run around and burn off some of that energy before it was his turn. We had also been working on getting Gunner to focus more the past week and pay attention better as well as follow directions and he did awesome. The nurse walks out and Gunner's little face turned south...he obviously doesn't like her either but we still talked him into going with us and playing(she called it). The first half of the meeting was spent talking to us about the speech therapists recommendation that we have to do before he can get implants and OMG I was livid. Once again it was never up to her(so I thought) whether or not he would get the implant or not. Anyway's I was still comfortable with the recommendations because we had been following through with all of them. Until she mentioned he HAS to have a Occupational therapy evaluation as well as speech therapy. I wasn't aware those things had to be done but we had been(and still are) in the process of getting him in to the right doctors. He was receiving those services at his school until summer vacation started. I guess their findings (at school) aren't enough! Grrrr....
Ok discussion with us (me and Dave...my fiancée) and now it is time for Gunner to work! He wanted nothing to do with it at all. These classes are to prepare him for all the tests they will do after he is implanted. She threatened time out twice (which we do not call it that we call it time to think) and he wanted nothing to do with her period at that point. So, I then took my necklace off and let Gunner wear it as long as he did his work. He then sat down and started to do what she asked...he got bored of that very quickly but he knew what she was asking and was tired of it. She then moved on to a new game...which included rolling a car when he hears the sound and stopping when he doesn't hear it...he was so into the car rolling that he missed the point totally. Then she got out play dough and asked him what the shapes (animals) were and he tried to sign the correct ones and did what she asked. He did awesome at this game. Next was putting the car on the short sound or the long sound picture....he totally failed it...I don't think he got it at all.
So basically our homework this week is to work on these tasks for the next visit. Today we did that. We worked on them and he did much better. Instead of using the car we used a balloon and he did great! He still wasn't sure about the pictures for the short and long sounds but we have all week to get them figured out.
I guess I get aggravated too easily sometimes. We are constantly working with him and Hayleigh with flashcards that show the English and Spanish word on the picture side and the sign language sign on the back. As well as working on his behavior modification, teaching him to listen and sound off the sounds we make and not to mention all the other things we have invested in to teach him. Along with working long hours to make ends meet and taking care of the house and the family...I'm tired of hurrying up and waiting! I just hope by next weeks visit I still have hair left to brush in the mornings LOL!
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Aw...I am sorry for your frustration. I hope that they can move along in the process for his implant. good luck to you.
- cleanaturalady
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