On Wednesday, Aug. 27, we headed back over to Philly for another hearing test. This time we were also checking Mikaela's hearing with aids in, but each ear separately instead of together. This was an attempt to definitively identify her as a canditate for a CI. Or not.
Well, yet again, the results were inconclusive. Of course she was too tired to consistently respond. I will be making an appointment to repeat the hearing test in Voorhees. Since it is so much closer, we should be able to time it better around her more alert waking hours.
It is really frustrating. If she were profoundly deaf and the hearing aids didn't bring her into the speech banana at all, we wouldn't have to go through this repetitive testing. I just want to be certain of where her residual hearing is before I give the okay to potentially destroy it.
Again, this whole CI thing FOR ME is a really difficult decision. It is becoming less so as we get closer to her first birthday. It is becoming more obvious that she likes having her hearing aids in. She like what sound she does receive from them. Subsequently, she is pulling at them less too! She only yanks them out when she is tired now. So, for me, that is a sign that she prefers to be part of the hearing world. And at this time, the best hearing aids we have available is the cochlear implant.
I am still emphatic about learning ASL. I want to give Mikaela all the tools in her bag to succeed as she grows. As all parents feel, I want her path to be one of least resistance. As a deaf child, I feel she should be able to take advantage of total communication. Of course once she receives the CI, we will focus relentlessly on audio/verbal therapy, but I believe that we can sign too. One tip I remember from some of the list serves to which I belong, said to have certain times of the day where we turn our voices off and only sign. This will allow us all to get better at ASL, while also having part of the day where we are focused on speaking and listening.
If any of you know of a great source for learning ASL, feel free to share. :-)
Gotta run! Today is my Pop-Pop's 86 birthday celebration and I have to get everybody ready. Have a great day and hug your kids an extra time or two today.
Sunday, August 31, 2008
Wednesday, August 20, 2008
A day in the life...
As promised, I wanted to share with you my day yesterday....
Of course Monday night we went to be too late due to the Olympic addiction, so when the alarm went off, I was a little groggy getting started. Juliana had her horseback riding lesson at 8:45 so we have to leave by 8:15. Kids fed, dressed and pulling out of the driveway by 8:17....ooooh, look at me go! I even remembered a drink for Juliana!
As we pulled into the farm I realized I didn't bring my check book. How was I to pay for the services rendered??? Yikes! I went through my wallet, through the bottom of the purse looking for change and managed to come up with the fee, less twenty-five cents! Not bad!
So we are unloading and I noticed that Juliana's apple juice spilled all over the floor of the van...I had stuck it in the diaper bag to carry it out and promptly forgot to put it in the cup holder for the drive. Now the carpet is in need of a Resolve treatment and the diaper bag and all of it's contents are pretty soaked. Okay...no big deal. It can be fixed.
Her lesson went well. Lisa, her instructor, said she has never seen a child post so well after only three lessons. My girl is a natural! Look out, Daddy!
We get home around 10 and I only have to go back out at 11 for the pony camp I signed her up for this week in Cherry Hill. I decided to leave most of the stuff in the car. I took in the soggy portion of the diaper bag as well as the bag itself and started a load of laundry. The remaining contents are in one of those environmentally friendly green shopping bags which I always have spilling all over my van. My purse, in the car. I even decide to leave the keys in the car. I'm only coming in to do a quick client coaching call, let Mikaela nap for a bit, pack her lunch and roll back out.
At about five minutes before 11:00, I go out to put her lunch in the car and start the air. It didn't make the usual dinging sound. It was a really strange clicking sound. Oh, no! I attempt to start it, nuthin! Battery dead. Yep! I left the lights on. No way! It was only an hour. Sounds like time for a new battery! Ugh! Well pony club is a no go for 'this day' as Juliana would say. At least I hadn't woken Mikaela yet!
I call AAA expecting it to be an hour or more. I pulled out the chocolate chip cookie dough I had made the night before and decided to bake them. I preheated the oven and attempted to drop them out onto my baking stones. Too hard still. I suppose I have to let them sit for a while. I turned off the oven.
Surprisingly, AAA came in only 13 minutes! WOW! I guess they have kept up with the high service response demand of today's instant gratification society! Who knew? I haven't had to use them in years.
My car was running and the nice gentleman said to let it run for about a half hour or so to recharge the battery. He also recommended getting it tested. Yah....I'm on it!
I decided to let Mikaela finish her nap. Hopefully this would help her get over the cold. My grandparents are coming on Thursday to stay with us for the weekend and I want us all to be at or near our best.
I kept checking the consistency of the dough and when it seemed scoopable, I turned the oven back on. I didn't hear that familiar click and hiss of the gas range. I didn't hear anything. The temperature stayed fixed at 112 degrees. (I guess it had retained a couple degrees from the earlier heating, because it usually starts at 100.) Then nuthin! Oh, great! The oven is broken!
I called Johnnies Appliances who had fixed our dryer a few months back and set up a service call. The nice lady said they could come Wednesday, Thursday or Friday. Uh, Wednesday, please! I have my grandparents coming, I need an oven!!! I don't know what we are cooking yet, but I need an oven! I asked her if she had any cancellations/openings left that afternoon, please remember me.
I called my mom to fill her in on the excitement of the day...as we were talking, Johnnies Appliances called in! She said there was a guy in my neighborhood finishing up a call and he could come over! YAY!!! He came in about 20 minutes and about 20 minutes after that, I had a working oven, to the tune of $162.50. How much is a new oven???? I hope this repair buys me another 8 years.
Kurt came home about 3:30 and I filled him in on the day and he said I wasn't allowed to touch anything else because I cost him too much already. I quickly reminded him that I saved him money. Had we needed a new oven, it would have cost him a kitchen remodel!!
Of course Monday night we went to be too late due to the Olympic addiction, so when the alarm went off, I was a little groggy getting started. Juliana had her horseback riding lesson at 8:45 so we have to leave by 8:15. Kids fed, dressed and pulling out of the driveway by 8:17....ooooh, look at me go! I even remembered a drink for Juliana!
As we pulled into the farm I realized I didn't bring my check book. How was I to pay for the services rendered??? Yikes! I went through my wallet, through the bottom of the purse looking for change and managed to come up with the fee, less twenty-five cents! Not bad!
So we are unloading and I noticed that Juliana's apple juice spilled all over the floor of the van...I had stuck it in the diaper bag to carry it out and promptly forgot to put it in the cup holder for the drive. Now the carpet is in need of a Resolve treatment and the diaper bag and all of it's contents are pretty soaked. Okay...no big deal. It can be fixed.
Her lesson went well. Lisa, her instructor, said she has never seen a child post so well after only three lessons. My girl is a natural! Look out, Daddy!
We get home around 10 and I only have to go back out at 11 for the pony camp I signed her up for this week in Cherry Hill. I decided to leave most of the stuff in the car. I took in the soggy portion of the diaper bag as well as the bag itself and started a load of laundry. The remaining contents are in one of those environmentally friendly green shopping bags which I always have spilling all over my van. My purse, in the car. I even decide to leave the keys in the car. I'm only coming in to do a quick client coaching call, let Mikaela nap for a bit, pack her lunch and roll back out.
At about five minutes before 11:00, I go out to put her lunch in the car and start the air. It didn't make the usual dinging sound. It was a really strange clicking sound. Oh, no! I attempt to start it, nuthin! Battery dead. Yep! I left the lights on. No way! It was only an hour. Sounds like time for a new battery! Ugh! Well pony club is a no go for 'this day' as Juliana would say. At least I hadn't woken Mikaela yet!
I call AAA expecting it to be an hour or more. I pulled out the chocolate chip cookie dough I had made the night before and decided to bake them. I preheated the oven and attempted to drop them out onto my baking stones. Too hard still. I suppose I have to let them sit for a while. I turned off the oven.
Surprisingly, AAA came in only 13 minutes! WOW! I guess they have kept up with the high service response demand of today's instant gratification society! Who knew? I haven't had to use them in years.
My car was running and the nice gentleman said to let it run for about a half hour or so to recharge the battery. He also recommended getting it tested. Yah....I'm on it!
I decided to let Mikaela finish her nap. Hopefully this would help her get over the cold. My grandparents are coming on Thursday to stay with us for the weekend and I want us all to be at or near our best.
I kept checking the consistency of the dough and when it seemed scoopable, I turned the oven back on. I didn't hear that familiar click and hiss of the gas range. I didn't hear anything. The temperature stayed fixed at 112 degrees. (I guess it had retained a couple degrees from the earlier heating, because it usually starts at 100.) Then nuthin! Oh, great! The oven is broken!
I called Johnnies Appliances who had fixed our dryer a few months back and set up a service call. The nice lady said they could come Wednesday, Thursday or Friday. Uh, Wednesday, please! I have my grandparents coming, I need an oven!!! I don't know what we are cooking yet, but I need an oven! I asked her if she had any cancellations/openings left that afternoon, please remember me.
I called my mom to fill her in on the excitement of the day...as we were talking, Johnnies Appliances called in! She said there was a guy in my neighborhood finishing up a call and he could come over! YAY!!! He came in about 20 minutes and about 20 minutes after that, I had a working oven, to the tune of $162.50. How much is a new oven???? I hope this repair buys me another 8 years.
Kurt came home about 3:30 and I filled him in on the day and he said I wasn't allowed to touch anything else because I cost him too much already. I quickly reminded him that I saved him money. Had we needed a new oven, it would have cost him a kitchen remodel!!
Checking in
Hi! Things are going very well. Mikaela is continuing to eat cereal and now up to two tablespoons plus 6 tablespoons formula three times a day. She is drinking about 6-8 ounces of formula as well after the cereal. That is three good meals a day and she feels like she is putting on some weight. In fact, my left hip, knee and ankle have a floating mysterious pain. I am assuming it is because I carry her on my left side! :-)
We had an evil cold/fever illness run through the house since last Saturday (8/9). Juliana and I are about 99% better, but Mikaela and Daddy are still working through it. Each morning, I have to do that lovely nasal ball suction thing on Mikaela. Needless to say I am confident that the sensory shut down is over. She is not shy about letting me know how much she dislikes that procedure! I run the vaporizor in her room at night. Hoping that is helping.
Olympic fever also has hit our home. We DVR every night and watch it the next day. Gymnastics, track, diving, swimming, it is all so exciting!! I thought I missed the entire Equestrian competition because it doesn't air on prime time. (Finally found it on the Oxygen network.) I only caught it since Monday night. It was quite exciting that USA and Canada had to have a jump off for the gold in the team finals! The last event airs Thursday 10 a.m. - 1 p.m. and this is on NBC! You know I already have the DVR set!
Yesterday was quite the interesting day! When I get back from pony camp, I'll share!
We had an evil cold/fever illness run through the house since last Saturday (8/9). Juliana and I are about 99% better, but Mikaela and Daddy are still working through it. Each morning, I have to do that lovely nasal ball suction thing on Mikaela. Needless to say I am confident that the sensory shut down is over. She is not shy about letting me know how much she dislikes that procedure! I run the vaporizor in her room at night. Hoping that is helping.
Olympic fever also has hit our home. We DVR every night and watch it the next day. Gymnastics, track, diving, swimming, it is all so exciting!! I thought I missed the entire Equestrian competition because it doesn't air on prime time. (Finally found it on the Oxygen network.) I only caught it since Monday night. It was quite exciting that USA and Canada had to have a jump off for the gold in the team finals! The last event airs Thursday 10 a.m. - 1 p.m. and this is on NBC! You know I already have the DVR set!
Yesterday was quite the interesting day! When I get back from pony camp, I'll share!
Tuesday, August 12, 2008
Food Going Down Well!!
Mikaela has been eating rice cereal with her Alimentum formula since Thursday last week! Three times a day - one tablespoon of cereal and 3 tablespoons of formula. She is keeping it down! I am thrilled. She loves it! Which is quite a change from before. When I tried it in the past, she gagged and threw it up as I was feeding it to her. Now she twirls her wrists and kicks her legs when she sees me bring it to her high chair! Too funny!
I'll keep this simple for a week and then I'll introduce some stage one foods. Let's pray she keeps it down. As a mom, I just want it to be easy for her. Let's face it, we are a bunch of foodies in this family and Mikaela should be able to enjoy it all as well!
I'll keep this simple for a week and then I'll introduce some stage one foods. Let's pray she keeps it down. As a mom, I just want it to be easy for her. Let's face it, we are a bunch of foodies in this family and Mikaela should be able to enjoy it all as well!
Thursday, August 7, 2008
CI Meeting
I just want to do a quick post before I leave for the weekend for the Benson Family Reunion. We went to CHOP on Tuesday for the CI team evaluation. At this time, we don't know for certain if Mikaela is eligible for a CI. One of her Audiograms gave borderline results. Meaning that she may have 'too much hearing' for a CI. Good news if she gains enough benefit from the hearing aids. I believe all your prayers are paying off! Anyway, we will have some more specific tests at the end of the month with each ear isolated rather than performing together.
We also had her 9 month well visit today. She lost a lot of weight (10 ounces) at a time when she is supposed to be gaining 1/2 to one ounce per day. Back to trying this 'food' thing! Please say prayers that she tolerates it better now. She has to put this weight back on and then some. At this time, she is in the 18 percentile for weight....not too good!
I'll post more next week!
We also had her 9 month well visit today. She lost a lot of weight (10 ounces) at a time when she is supposed to be gaining 1/2 to one ounce per day. Back to trying this 'food' thing! Please say prayers that she tolerates it better now. She has to put this weight back on and then some. At this time, she is in the 18 percentile for weight....not too good!
I'll post more next week!
Saturday, August 2, 2008
Pilot Cap
Many of you are waiting for the picture of Mikaela in her pilot cap....sorry for the delay! Too cute!
Friday, August 1, 2008
Cochlear Implant technology is 30 years old
On one of the yahoo groups this morning, a woman posted an article about CI's being 30 years old. It also featured a 10 month old in Australia who received simultaneous bilateral implants. He had them activated last month. Here is the link if you want to see a picture of what it will look like should Mikaela receive them.
http://www.theage.com.au/national/another-miracle-in-implants-30-years-20080731-3nzz.html
Of course, at this time, CHOP will only do unilateral. Should we decide to get a second one, we would have to find another surgical facility. (I would research John Hopkins) As many of you know, I have been on the fence about this. Lately, should the doctors tell us that Mikaela is a good candidate, I have been leaning towards getting her implanted. I have always said that if we do one, I want two. God gives us two ears for a reason. Localization of sound, hearing in noisy environments, clear speech discrimination and I am sure there are more valid reasons to hear from both ears.
I still have more research to do. Since this technology is only 30 years old and more importantly only been used in infants for maybe about 10 years, there aren't many studies about potential long-term effects. Initially, the youngest they would implant was 2 years old. Then the FDA lowered it to 18 months and currently, here in the USA, the FDA has approved implatation at 12 months.
As many of you know, implanting will most likely sacrifice any natural hearing that Mikaela has. So when her processors are off at night, swimming, bathing or any time she has them off, she won't hear anything. Right now she could possibly hear loud noises. (As you noticed on her official hearing test results.) I also read that when you yell and are within 4 feet of someone, that your voice is about 75 dB. She is hearing at 55 or 60 dB at the low frequency. So she would hear a warning scream. Now, she doesn't have speech discrimination with her aids off and just using her natural hearing because she can't hear certain sounds. Meaning that she would probably not know what you yelled, but she would have heard the yell. Not so after surgery.
Recently I was talking to a friend and she was shocked to learn of this. I think a lot of people think the implants are 'always on' and don't realize there is an external part that comes off. So yes, Mikaela will always be deaf. That is why I am feeling so strongly about learning ASL. That is part of who she is. I want our family to be connected with the Deaf community even if she receives a device that allows her to hear. She should have others around her that can relate to what she may be experiencing through various stages of her life.
It is my understanding that with the implants, she will typically hear in the "mild hearing loss" range. That means if you are in the kitchen talking to her and someone is pulling out the chair, you will probably have to repeat yourself. She will have to got to AV (Audio/Verbal) aka listening/speech therapy for quite a while.
In addition, she will have the bed shaker for the smoke detector and her morning alarm. I am not sure of what other assistive devices she will need as she grows, but I am sure we will learn. There are FM systems that help with hearing the teacher in school as well as the TV. And there are special connectors to assist with the phone, Ipod and the like, should she need them.
A cochlear implant is not a cure. It is just the best "hearing aid" they have available at this time.
http://www.theage.com.au/national/another-miracle-in-implants-30-years-20080731-3nzz.html
Of course, at this time, CHOP will only do unilateral. Should we decide to get a second one, we would have to find another surgical facility. (I would research John Hopkins) As many of you know, I have been on the fence about this. Lately, should the doctors tell us that Mikaela is a good candidate, I have been leaning towards getting her implanted. I have always said that if we do one, I want two. God gives us two ears for a reason. Localization of sound, hearing in noisy environments, clear speech discrimination and I am sure there are more valid reasons to hear from both ears.
I still have more research to do. Since this technology is only 30 years old and more importantly only been used in infants for maybe about 10 years, there aren't many studies about potential long-term effects. Initially, the youngest they would implant was 2 years old. Then the FDA lowered it to 18 months and currently, here in the USA, the FDA has approved implatation at 12 months.
As many of you know, implanting will most likely sacrifice any natural hearing that Mikaela has. So when her processors are off at night, swimming, bathing or any time she has them off, she won't hear anything. Right now she could possibly hear loud noises. (As you noticed on her official hearing test results.) I also read that when you yell and are within 4 feet of someone, that your voice is about 75 dB. She is hearing at 55 or 60 dB at the low frequency. So she would hear a warning scream. Now, she doesn't have speech discrimination with her aids off and just using her natural hearing because she can't hear certain sounds. Meaning that she would probably not know what you yelled, but she would have heard the yell. Not so after surgery.
Recently I was talking to a friend and she was shocked to learn of this. I think a lot of people think the implants are 'always on' and don't realize there is an external part that comes off. So yes, Mikaela will always be deaf. That is why I am feeling so strongly about learning ASL. That is part of who she is. I want our family to be connected with the Deaf community even if she receives a device that allows her to hear. She should have others around her that can relate to what she may be experiencing through various stages of her life.
It is my understanding that with the implants, she will typically hear in the "mild hearing loss" range. That means if you are in the kitchen talking to her and someone is pulling out the chair, you will probably have to repeat yourself. She will have to got to AV (Audio/Verbal) aka listening/speech therapy for quite a while.
In addition, she will have the bed shaker for the smoke detector and her morning alarm. I am not sure of what other assistive devices she will need as she grows, but I am sure we will learn. There are FM systems that help with hearing the teacher in school as well as the TV. And there are special connectors to assist with the phone, Ipod and the like, should she need them.
A cochlear implant is not a cure. It is just the best "hearing aid" they have available at this time.
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