Mallie Bean
Saturday, April 23, 2011
Finally..........the light at the end
So pretty much since Mallie had her ears turned on - she has been sick:( Started with the stomach flu then she had a little break on last sat and sunday - monday she woke up with snot everywhere - which then rolled into coughing and coughing and more coughing with a fever for 3 days. The poor thing probably thinks her ears made her sick. We put them on her as much as we could but there was one day where she slept the entire day pretty much with us waking to feed and change her:( So with all that sorta behind us - today the old Mallie was back - smiling and laughing!! We are on program 3 currently and amazingly enough - about 80% of the time when I call her name - she turns to look!!! How cool is that? Still don't know if she knows her name yet but she is hearing me!!! I am looking forward to a healthy week to see how she does. As the last week its amazing she wore them at all. Here are some pics from her activation and at home with her ears on!!! 
Saturday, April 16, 2011
ACTIVATION and days 1 & 2
Hello All,
Its official, Mallie can hear!!!!!! And no she can't hear like you or I do, or at least understand yet, but she can hear stuff!!!! The initial testing in the OR prooved to be wrong and the retest showed much better results:) We got to our appt 20 minutes late due to traffic and not quite remember where to go inside the hospital. Once we were in the appt she showed us all the parts and pieces - there are two suitcases full of stuff they sent us home with :) Then we hooked up her right ear first to do some testing. She tested individual electrodes (there are 24 total connected to Mallies cochlea) We could not test everyone on that appt cause it takes awhile. But while the testing is going on - Kerston our Audiologist said that Mallie may or may not hear the sounds the test produces. Well she did and she started crying right away. That is the best cry we had ever heard!! She was hearing sounds probably for the first time ever! So before we even activated them Mallie impressed Kerston. She was so excited to see that because of our initial test while in the OR. After the she completed the test - we then turned it on, just on the right. Mallie wailed again.....its horrible to hear her cry but its awesome to know that it means she is hearing. She is scared and freaked out - because her whole life she has been in silence. Its amazing!!! Of course we still had another ear to do...the same thing happened then - she cried during the testing. But this time she cried herself to sleep and slept thru activation of left ear. Also sleeping thru both of them being on at the same time. Apparently this happens so not to worry. Based on the test results , Kerston set them up with 4 programs that we can choose. With 1 being the least invasive and each one adding more stimulation or increasing the sounds. We don't want to bombard her all at once. So on number one she seemed fine - no crying no nothing. We were told we can increase the programs as we see fit. Then we come back in a week - we then tweak it some more. If Mallie goes thru all 4 of these before next thursday that will be amazing and great - if she don't also not a huge deal. Its a gradual process so she learns to love sound not hate it for scaring the crap out of her. So we left there with our bags of stuff and Mallie wearing her new ears. Cathy G and Grandma Mary were there to with us. Mary video taped it for us - so hopefully soon I will post her video for all to see. Cathy G is Mallie's speech therapist who will be seeing her twice week to work on learning the sounds and speaking them!!! We all left there extremely excited!! Mallie was really happy walking out to the car. We went to breakfast and she sat in a high chair like a big girl, turning around to see the people behind us. Also scarfing down some of daddy's pancakes!! The whole we have not taken the ears off :) We got home and she laid down for a nap in time to wake up for Grandma Tana to see her. Now everytime we put them on her she cries and this is normal. They said it will last a week or so until she gets used it. The crying only lasts a minute and then she is fine. Only Mallie - at 6pm of activation day - she threw up :( The poor girl had a great day and then we end up with the tummy flu. it was a long nite for us as I got up every few hours to give her juice. That was the only thing she would keep down. By morning I thought all was good as she drank a half a bottle. But at daycare she got sick again and all day just was not herself. One cool thing is before heading to daycare she was playing on our bed and I said her name 3 times. She finally looked at me!!! Now she does not know her name that soon but she heard me - completely amazing.......Then arrived at Janet's and the new dog smokie was barking like crazy at us. she startled in my arms (but never cried) How amazing is that to have her startle to the dog bark!!!! Now last night all she wanted was to be held and rock, feeling pretty bad...so we just snuggled till bed - I gave her some juice as much as I could. Doing the same last night - getting up every few hours to give her some. She did not want much to eat this morning either but so far she is holding stuff down. Still is not herself - hoping this is the last day of this crap. Also for those of you that think her ears are making her sick - it does make sense a little bit but I spoke with her audiologist yesterday and she said they have never heard of that. Its unrelated - now if she was acting dizzy or off balance maybe but she is fine when it comes to that. They said if she was gonna get nauseous from all this it would have been in the weeks after the surgery. So leave it to her to get the flu on the same day!!! I love the headband I got for her as it holds the processor and everything on - she does not mess with it at all!!! Thank god for that :) So the plan is to leave them on all day except while sleeping and bathing. As much sound as she can process is the best thing for her. none of us can wait to see how she is going to do. Day 3 is going good so far except for this morning when I turned them on - she would not stop crying and I could not figure out why she has been fine the last day and half with program 2. Well somehow I bumped one ear to number 3 and one to number 4. The poor girl......she was not ready for that. So we are still on number two and so far today she seems great other than not feeling so hot. Thinking if she does this good all day I will switch her to three either later tonite or tomorrow. Also I will post pics soon, hopefully today!!!
Its official, Mallie can hear!!!!!! And no she can't hear like you or I do, or at least understand yet, but she can hear stuff!!!! The initial testing in the OR prooved to be wrong and the retest showed much better results:) We got to our appt 20 minutes late due to traffic and not quite remember where to go inside the hospital. Once we were in the appt she showed us all the parts and pieces - there are two suitcases full of stuff they sent us home with :) Then we hooked up her right ear first to do some testing. She tested individual electrodes (there are 24 total connected to Mallies cochlea) We could not test everyone on that appt cause it takes awhile. But while the testing is going on - Kerston our Audiologist said that Mallie may or may not hear the sounds the test produces. Well she did and she started crying right away. That is the best cry we had ever heard!! She was hearing sounds probably for the first time ever! So before we even activated them Mallie impressed Kerston. She was so excited to see that because of our initial test while in the OR. After the she completed the test - we then turned it on, just on the right. Mallie wailed again.....its horrible to hear her cry but its awesome to know that it means she is hearing. She is scared and freaked out - because her whole life she has been in silence. Its amazing!!! Of course we still had another ear to do...the same thing happened then - she cried during the testing. But this time she cried herself to sleep and slept thru activation of left ear. Also sleeping thru both of them being on at the same time. Apparently this happens so not to worry. Based on the test results , Kerston set them up with 4 programs that we can choose. With 1 being the least invasive and each one adding more stimulation or increasing the sounds. We don't want to bombard her all at once. So on number one she seemed fine - no crying no nothing. We were told we can increase the programs as we see fit. Then we come back in a week - we then tweak it some more. If Mallie goes thru all 4 of these before next thursday that will be amazing and great - if she don't also not a huge deal. Its a gradual process so she learns to love sound not hate it for scaring the crap out of her. So we left there with our bags of stuff and Mallie wearing her new ears. Cathy G and Grandma Mary were there to with us. Mary video taped it for us - so hopefully soon I will post her video for all to see. Cathy G is Mallie's speech therapist who will be seeing her twice week to work on learning the sounds and speaking them!!! We all left there extremely excited!! Mallie was really happy walking out to the car. We went to breakfast and she sat in a high chair like a big girl, turning around to see the people behind us. Also scarfing down some of daddy's pancakes!! The whole we have not taken the ears off :) We got home and she laid down for a nap in time to wake up for Grandma Tana to see her. Now everytime we put them on her she cries and this is normal. They said it will last a week or so until she gets used it. The crying only lasts a minute and then she is fine. Only Mallie - at 6pm of activation day - she threw up :( The poor girl had a great day and then we end up with the tummy flu. it was a long nite for us as I got up every few hours to give her juice. That was the only thing she would keep down. By morning I thought all was good as she drank a half a bottle. But at daycare she got sick again and all day just was not herself. One cool thing is before heading to daycare she was playing on our bed and I said her name 3 times. She finally looked at me!!! Now she does not know her name that soon but she heard me - completely amazing.......Then arrived at Janet's and the new dog smokie was barking like crazy at us. she startled in my arms (but never cried) How amazing is that to have her startle to the dog bark!!!! Now last night all she wanted was to be held and rock, feeling pretty bad...so we just snuggled till bed - I gave her some juice as much as I could. Doing the same last night - getting up every few hours to give her some. She did not want much to eat this morning either but so far she is holding stuff down. Still is not herself - hoping this is the last day of this crap. Also for those of you that think her ears are making her sick - it does make sense a little bit but I spoke with her audiologist yesterday and she said they have never heard of that. Its unrelated - now if she was acting dizzy or off balance maybe but she is fine when it comes to that. They said if she was gonna get nauseous from all this it would have been in the weeks after the surgery. So leave it to her to get the flu on the same day!!! I love the headband I got for her as it holds the processor and everything on - she does not mess with it at all!!! Thank god for that :) So the plan is to leave them on all day except while sleeping and bathing. As much sound as she can process is the best thing for her. none of us can wait to see how she is going to do. Day 3 is going good so far except for this morning when I turned them on - she would not stop crying and I could not figure out why she has been fine the last day and half with program 2. Well somehow I bumped one ear to number 3 and one to number 4. The poor girl......she was not ready for that. So we are still on number two and so far today she seems great other than not feeling so hot. Thinking if she does this good all day I will switch her to three either later tonite or tomorrow. Also I will post pics soon, hopefully today!!!
Thursday, April 7, 2011
Only one more week to go...
So its late but I wanted to post some exciting news!!!! One more week till we get her ears turned on - so excited:) I am so excited for what is to come once she can start processing sound. Everything I have heard has said - it won't be instant and I am prepared for that. Just another little adventure for us to endure. Another happy note is this week Mallie's balance while sitting is greatly improved. She sits in her bobby pillow - just because she still just falls over when she is done sittin up. She will scoot all the way around in it to get toys or reach and put weight on her arms. Its such a huge improvement!!!! Finally got her some shoes that fit too - she is wearing size 1's. She likes to wear them - she is becoming quite the big girl these days!!! Daddy gets to have his own first too. This weekend while I stay in TC with the girls for bowling, he will be in charge for almost 2 whole days and 1 night. I know he can do it, although he is a little upset its suppose to be the nicest weather yet this weekend and he has daddy day care. Somehow he is not feeling much sympathy from me on this one....weird? It will be hard to be away from Mallie for one night - but I am so looking forward to hanging with some great girls!!!
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