We have been cleared as far as the psychological eval goes! Chris and I (and Samantha and Peter) met with a Kaiser psychologist to make sure we knew what we were getting into with the CI, and all the work it would take on our parts.
I think we blew those concerns out of the water. I did most of the talking, but Chris was good moral support. We talked about how we were looking at a school that would train us to create a language learning environment. We talked about how it would be great to mainstream by preschool, but that kindergarten was also a reasonable goal. I talked about daily maintenance. We talked about the pros of giving Peter access to as much as possible, and the most opportunities to succeed that we could.
The Dr. asked about what would happen if it didn't work out as well as we hoped. Chris and I are on the same page about crossing that bridge only if we have to, but that whatever situation we find ourselves in we will do whatever we can to give our kids the best chances. I have met several people with CI's now, and I told her that the only person whom I had met that wasn't as much of a fan was the little deaf girl from China who had had NO language (no signing, no writing, no reading, no nothin') until she was adopted here. I almost started crying when I brought up the deaf Chinese kids just sitting in the orphanages! (I am not sad that they are deaf, or in orphanages, but that they are left without language for so long. Communicating is so important- whether it be by sign, written word or speech, and to deny these kids that...but I can't adopt them all. I can't adopt any of them with my hands as full as they are at this point)
The one question I didn't expect was "Did you ever consider just raising Peter in the deaf world?" I hadn't ever really thought about that one, but I brought up my Chinese adoption analogy- just because you get a baby from China doesn't mean your whole family starts speaking Chinese. Some families do their best to honor the child's cultural heritage, but the child also learns Spoken/written English, and they may or may not get Chinese lessons. Our family is oral, as is every person in our extended family. So we will do our best to give Peter ASL and access to the deaf community, but we want to do what we can to help him communicate with as many people as possible, which means listening and speaking, too.
"What if he decides not to wear the CI when he is older?" Well, I guess that is a possibility, and if he is an adult, it s his prerogative. We would certainly all learn as much sign as we could, but I can't imagine the extended family becoming fluent in ASL (other than my sister-in-law, who already is). But again, that bridge doesn't need to be crossed. Hopefully CI's give Peter useful, and even beautiful, sound that he will be happy to have, and when he wants it really quiet, he can just take them off for a while.
And that was that. The Dr. said that as far as she was concerned we were ready, but that it wasn't her decision, and that her report just got forwarded to the CI Audiologist, and then the decision was by the ENT team. OK. So I had a mad scramble to get to these last two appointments, and now I get to wait :/ I hope it isn't too long of a wait!
Wednesday, January 30, 2013
Hurry Up and Wait
I met with the ENT yesterday to review the scans. She was extremely positive about the results, and walked me through the images. She did mention that the auditory pathways were slightly more "bulbous" in shape than most people's, but said that that was a pretty normal variation. She pointed out how the nerves could be followed on the different images, and how the facial nerve was well protected by bony structure. Facial nerve damage is one of those rare risks with CI surgery, but Peter's anatomy should minimize that particular risk. She pointed out the loops of the vestibular system-.very cool to see. One thing from the report got cleared up, too. The CT scan mentioned non-specific nodules on the tympanic membrane-,she said it was just earwax! I even saw all of Peter's teeth just waiting to come in! (no teeth yet, and the scans don't tell me when they will erupt!) Everything looked great, and should make the surgery a routine one. So all that is wonderful.
Then the Dr. Starts telling me about a CI conference, and how the trend is to do the implants sequentially as opposed to simultaneously, especially in children, unless there is a reason like meningitis and the risk of ossification of the cochlea (which makes it impossible to implant). She doesn't come right out and say that we should do just one, but it is clear that she is steering in that direction. If we did one ear, then the second ear could be done 3-6 months later. I am not sure if I want to fight to get both done at once. She also said something about how hard it is to test kids, and how programming the CIs one at a time is easier on the kids....The Dr. left the ball in my court, but I don't know if I actually have a decision or not.
At the end of the visit the Dr. told me that the surgery schedule wasn't open for April -May until February. Talk about a let down. I know February is right around the corner, but I thought I would get to book a date at this appointment! And originally the Dr. had said early April for a surgery, then the CT report said something about March, and now the Dr. is saying late April or even May!!! I hope we don't have to wait until May. The Dr. had expressed reservations about some European surgeons routinely doing simultaneous bilateral implants on six-month-olds, but I can understand parents pushing for their kids to hear as soon as possible. I don't know that I would have pushed for surgery at six months, but if we have to do them one at a time, I think Peter could do one now- as he is totally healthy, and a big strong baby. There is talk that the FDA might well lower the age guideline from 12 months to nine months, but that won't happen before Peter gets his implants.
I guess I just wait for the scheduler to call. Then do I say "give me a double time slot!" Or what? I have the appointment with the CI audiologist in a couple weeks, but I don't know if I have to wait until after that appointment to book the date. I am a little confused here, but in a few weeks it will all be clear.
Then the Dr. Starts telling me about a CI conference, and how the trend is to do the implants sequentially as opposed to simultaneously, especially in children, unless there is a reason like meningitis and the risk of ossification of the cochlea (which makes it impossible to implant). She doesn't come right out and say that we should do just one, but it is clear that she is steering in that direction. If we did one ear, then the second ear could be done 3-6 months later. I am not sure if I want to fight to get both done at once. She also said something about how hard it is to test kids, and how programming the CIs one at a time is easier on the kids....The Dr. left the ball in my court, but I don't know if I actually have a decision or not.
At the end of the visit the Dr. told me that the surgery schedule wasn't open for April -May until February. Talk about a let down. I know February is right around the corner, but I thought I would get to book a date at this appointment! And originally the Dr. had said early April for a surgery, then the CT report said something about March, and now the Dr. is saying late April or even May!!! I hope we don't have to wait until May. The Dr. had expressed reservations about some European surgeons routinely doing simultaneous bilateral implants on six-month-olds, but I can understand parents pushing for their kids to hear as soon as possible. I don't know that I would have pushed for surgery at six months, but if we have to do them one at a time, I think Peter could do one now- as he is totally healthy, and a big strong baby. There is talk that the FDA might well lower the age guideline from 12 months to nine months, but that won't happen before Peter gets his implants.
I guess I just wait for the scheduler to call. Then do I say "give me a double time slot!" Or what? I have the appointment with the CI audiologist in a couple weeks, but I don't know if I have to wait until after that appointment to book the date. I am a little confused here, but in a few weeks it will all be clear.
Monday, January 28, 2013
More positive signs
Yesterday we met up with a family we had met at The playgroup at the Deaf School. The older sister in that family is hearing, and she and Sydney got along quite well. They were both a little shy at first, but Sydney ended up havering a lot of fun. Besides both having deaf little brothers, and being active creative little girls, they both also do gymnastics. I think it is great for Sydney to meet other hearing siblings of deaf kids- because there is some extra understanding there- even if the kids don't know they could benefit from those peer relationships.
I had a great time talking with the mom, who signs and wears a hearing aid. We mostly talked about mom stuff, and watched Peter try to get dirt to eat. She likes to read, and teaches reading, but those topics will have to wait, as we had to feed the starving children, and head off to a party!
The party was an ASL using group of adults. I did my best, but keeping an eye on a baby pulling up on everything means I missed some. Luckily a couple people helped out :). My favorite signs I learned - Lemon (Peter was eating one) and Lemonade ;)
There were other kids for Sydney to play with, too. Two of the kids were deaf, and signed, but also had CI's and spoke perfectly. Sydney really enjoyed meeting these older kids- not because they had CI's, but because they were just regular kids AND older (always a bonus) AND they had a hamster (double bonus) AND a puppy (triple bonus). The hostess also had a CI. The whole family was very pro- ASL and CI's. It was a very positive experience, and everyone was lovely. I hope I get to see them again.
The question of Peter's surgeon came up, and it turns out that Peter's ENT was a Fellow at Stanford for the daughter's surgery, and the mom works with the ENT's son (she's a teacher, too). Small world! But it made me feel even better about moving forward with the surgery.
I had a great time talking with the mom, who signs and wears a hearing aid. We mostly talked about mom stuff, and watched Peter try to get dirt to eat. She likes to read, and teaches reading, but those topics will have to wait, as we had to feed the starving children, and head off to a party!
The party was an ASL using group of adults. I did my best, but keeping an eye on a baby pulling up on everything means I missed some. Luckily a couple people helped out :). My favorite signs I learned - Lemon (Peter was eating one) and Lemonade ;)
There were other kids for Sydney to play with, too. Two of the kids were deaf, and signed, but also had CI's and spoke perfectly. Sydney really enjoyed meeting these older kids- not because they had CI's, but because they were just regular kids AND older (always a bonus) AND they had a hamster (double bonus) AND a puppy (triple bonus). The hostess also had a CI. The whole family was very pro- ASL and CI's. It was a very positive experience, and everyone was lovely. I hope I get to see them again.
The question of Peter's surgeon came up, and it turns out that Peter's ENT was a Fellow at Stanford for the daughter's surgery, and the mom works with the ENT's son (she's a teacher, too). Small world! But it made me feel even better about moving forward with the surgery.
Imaging part 2, or Hallelujah!
I got an email from Peter's ENT with the scan results. I have never been so happy to have my child labelled "unremarkable"! The excerpt from the report below use the word twice!
Nonspecific Nodular thickening of the tympanic membrane
bilaterally. Otherwise external auditory canals unremarkable. The
ossicles are symmetric. Mastoid attic, antrum well-aerated and
symmetric. No osseous destructive lesion The cochlea and
semicircular canals are symmetric. The internal auditory canals
are symmetric without mass on this noncontrast examination.
Vestibular aqueduct without enlargement.
** IMPRESSION **:
Essentially unremarkable examination of the middle/inner ear
Minor nodular thickening of the tympanic membrane bilaterally,
nonspecific
Cochlear nerves are present, symmetric in appearance.
What does this mean? It means Peter is a great candidate for CI's!! It also means that the risk of a "gusher" or a big leak of CSF when they insert the electrode is less, and he doesn't have LVAS/EVA'S - though I didn't suspect that, as his balance seems normal.
I was so happy to read this :). And then this morning the ENT's office called to schedule a consultation and to schedule the surgery. The only time she had available until MARCH was tomorrow, so I had to reschedule the French class I teach. Short notices all around, but this is so great to be moving forward by leaps and bounds.
Another hoop to jump through is meeting with the psychologist. That office called because they wanted to set Peter up with an appointment to see if he was ready for a CI. "I thought the appointment was for us, the parents? I mean, I will bring Peter, but at 9 months old he's not that much of a conversationalist. " The scheduler laughed and said she had read 9 YEARS by mistake. So that is Wednesday.
We may have another appointment with the CI audiologist, though I spoke with her on the phone, and told her we wanted to go with Advanced Bionics. We will get the Neptune (a waterproof body-worn processer, with the microphone on th headpiece) first, and a certificate for their brand new, smaller, sleeker behind-the-ear (BTE) processer to redeem when that comes out.
http://www.advancedbionics.com/us/en/Neptune.html
All this and the sun actually came in my window today! Our house faces North, so winter sun doesn't get to us.
Wednesday, January 23, 2013
Imaging (part 1)
Today Peter is getting his MRI and CT scans. I just left him at the threshold to the MRI room. The MRI is going to take about an hour and fifteen minutes, then the CT scan an additional 45 or so. I was so worried about the fasting part, but Peter was Ok, and didn't even want to nurse when I gave him his last chance Pre-scan at 9:10. He got to try apple juice for the first time after that, since he could have a little to drink until 11:15. He liked it, but didn't drink very much. We went to the library for toddler playtime, and he was nicely distracted, and didn't complain about being hungry.
He wasn't as happy in the car on the way here. He saw me put the carseats for the girls in my mom's car, and started wailing. He was even whimpering in his sleep when he finally passed out for a late nap. He got to sleep through check in here, but woke up when we weighed him. Strange place, unfamiliar people- but he was OK with most of it until the IV....it took three tries for them to get it :(. Apparently the bigger, healthier, chubbier babies are harder to find the veins on. I was almost crying because he was wailing, and they kept poking him. He was all wrapped up in a blanket so he couldn't wiggle away, so with the blanket and the screaming he worked himself into a sweat. I couldn't look at the needle, or I might have passed out or thrown up. All I could do was look at his sad, tear-streaked, screaming face and apologize. Luckily the sedative was really fast acting, and he was almost asleep as I handed him to the Doctor at the entrance to the MRI room.
Watching them put oxygen tubes at his nose, and tape monitors to him, and scoot him into a head positioning device almost made me cry, too. But I had to remind myself that this most likely will be the only MRI Peter will have in his life, and that he will be OK.
I have a while to wait now. I am hungry, but they want my cell phone number if I leave the waiting room, and I think I lost my phone. I guess I can go without eating for a while, too. I forgot to ask about the blood draw for Genetics.
2:55- I got to go back to the recovery area! He is still snoozing, though. They didn't do a blood draw, so I guess we will wait on that.
He wasn't as happy in the car on the way here. He saw me put the carseats for the girls in my mom's car, and started wailing. He was even whimpering in his sleep when he finally passed out for a late nap. He got to sleep through check in here, but woke up when we weighed him. Strange place, unfamiliar people- but he was OK with most of it until the IV....it took three tries for them to get it :(. Apparently the bigger, healthier, chubbier babies are harder to find the veins on. I was almost crying because he was wailing, and they kept poking him. He was all wrapped up in a blanket so he couldn't wiggle away, so with the blanket and the screaming he worked himself into a sweat. I couldn't look at the needle, or I might have passed out or thrown up. All I could do was look at his sad, tear-streaked, screaming face and apologize. Luckily the sedative was really fast acting, and he was almost asleep as I handed him to the Doctor at the entrance to the MRI room.
Watching them put oxygen tubes at his nose, and tape monitors to him, and scoot him into a head positioning device almost made me cry, too. But I had to remind myself that this most likely will be the only MRI Peter will have in his life, and that he will be OK.
I have a while to wait now. I am hungry, but they want my cell phone number if I leave the waiting room, and I think I lost my phone. I guess I can go without eating for a while, too. I forgot to ask about the blood draw for Genetics.
Tuesday, January 15, 2013
I was right, but I wish I weren't
We had a visit to the ophthalmologist today, to follow up on what the Geneticist had noted. The doctor was obviously a kid specialist- the room was decorated with drawings from kids, and there were toys and posters all over. The doctor held different small toys out to check Peter's gaze, then held some prisms up to his eyes. Then someone else came, looked with more prisms and toys. I asked about the prisms, and she said they moved the image of the toy, so they could tell if he was following it with his gaze. Interesting. Then the dilation drops, so they could check out the inner eye....half hour of waiting for them to take effect...all the while my husband has taken off work to meet us at the Dr.s, and has both girls in the waiting room....and finally the last part of the exam, where the Dr. looked through a bunch of lenses at Peter's eyes. Peter had fallen aseep and was NOT happy.
Good news, Peter doesn't need glasses, BUT he does have Duane's Retraction. I wasnt happy after my research made me freak out about Duane's Syndrome. The doctor said that it is not serious, and not even that uncommon. He thought it was more likely Peter had this eye thing AND hearing loss, instead of the two being linked and a "syndrome". He will ask for "thinner slices of the brainstem" when it comes to the scan next week. That sounds kind of like a weird mushroom dish, but it will help them to see what is connected to what back there. The Duane's is not anything they would normally order a CT scan for, but since it's already being done they might as well get all the use they can out of it.
The Duane's also means that Peter will have to turn his head more to the left to get a good view in that direction, but he has already figured that out for himself. The dr. suggested Peter might have an easier time batting left handed when it comes time for softball or baseball ;) Hopefully that is the only accommodation needed!
Good news, Peter doesn't need glasses, BUT he does have Duane's Retraction. I wasnt happy after my research made me freak out about Duane's Syndrome. The doctor said that it is not serious, and not even that uncommon. He thought it was more likely Peter had this eye thing AND hearing loss, instead of the two being linked and a "syndrome". He will ask for "thinner slices of the brainstem" when it comes to the scan next week. That sounds kind of like a weird mushroom dish, but it will help them to see what is connected to what back there. The Duane's is not anything they would normally order a CT scan for, but since it's already being done they might as well get all the use they can out of it.
The Duane's also means that Peter will have to turn his head more to the left to get a good view in that direction, but he has already figured that out for himself. The dr. suggested Peter might have an easier time batting left handed when it comes time for softball or baseball ;) Hopefully that is the only accommodation needed!
Saturday, January 12, 2013
Neither a blessing nor a curse
I try to live in the moment and appreciate the little joys every day. That can be so hard when dealing with my daughters, who seem to have gone feral, a cranky baby, and obnoxious dogs knocking over garbage and peeing in the girls' room.
I try to appreciate the people I meet and the experiences I have, but I don't think I will ever be one of those people who says my child's deafness is such a blessing because of all the great people I have met and how much I have learned. But neither will I say that it is a curse and wonder what I did to deserve this. It is what it is.
Any decision or circumstance changes our path in life a bit, and we get the opportunity to meet people and learn from our experiences on any of those paths. I am thankful that the people in the Deaf community that I have met have been helpful, and have welcomed Peter and his family with open arms. I am thankful that all the doctors and specialists on Peter's team have been kind, open-minded, and easy to work with. I am thankful I don't have to fight with my health insurance company about anything. I am thankful that we live near great schools, and that no matter what technology can or can't give Peter, he will have access to a great education. I haven't spent a lot of time wishing all of this weren't necessary. It is what it is. I do get exhausted and overwhelmed sometimes, but I couldn't say whether that is due to dealing with all this stuff, or just cause I have three kids....
I do wish for a few things- but only in a tongue-in-cheek way: an extra 24-hours in a week, sanity, a magic wand to clean my house, but I think those are pretty standard mom wishes ;). I do need to figure out how to make sure my daughters get enough attention, and try to not create a situation where they resent their little brother for hogging all of my time. Balance is going to be one of the really big challenges over the next few months, but they are worth it. I try to remind myself every day that my three amazing kids are my blessings.
I try to appreciate the people I meet and the experiences I have, but I don't think I will ever be one of those people who says my child's deafness is such a blessing because of all the great people I have met and how much I have learned. But neither will I say that it is a curse and wonder what I did to deserve this. It is what it is.
Any decision or circumstance changes our path in life a bit, and we get the opportunity to meet people and learn from our experiences on any of those paths. I am thankful that the people in the Deaf community that I have met have been helpful, and have welcomed Peter and his family with open arms. I am thankful that all the doctors and specialists on Peter's team have been kind, open-minded, and easy to work with. I am thankful I don't have to fight with my health insurance company about anything. I am thankful that we live near great schools, and that no matter what technology can or can't give Peter, he will have access to a great education. I haven't spent a lot of time wishing all of this weren't necessary. It is what it is. I do get exhausted and overwhelmed sometimes, but I couldn't say whether that is due to dealing with all this stuff, or just cause I have three kids....
I do wish for a few things- but only in a tongue-in-cheek way: an extra 24-hours in a week, sanity, a magic wand to clean my house, but I think those are pretty standard mom wishes ;). I do need to figure out how to make sure my daughters get enough attention, and try to not create a situation where they resent their little brother for hogging all of my time. Balance is going to be one of the really big challenges over the next few months, but they are worth it. I try to remind myself every day that my three amazing kids are my blessings.
Wednesday, January 9, 2013
Genetic Consult
Luckily my insurance is Kaiser, and they have been SOOO easy to work with! No questions about in network or not (though I do have to go to their facilities) and all the teams have been working together seamlessly. Yesterday we had our genetic consult (so they could order the blood to be drawn during sedation at the ct scan).
After chatting about medical history, and anything that might be hereditary (like strasbismus), the Dr. examined Peter and was duly charmed. Crawling, pulling up, strong legs, yup. No wierd dimples or pits (didn't expect that question!). No funky birthmarks (except the stork bite). Feet are normal (and big). They said he looked mischiveous, and then agreed that there was something going on with his left eye. Peter 's left eye doesn't seem to turn all the way to the left, so if he is trying to look left he ends up looking a little cross-eyed. The doctor waved different toys around to get Peter to look, but flirt that he is, he just gave her the "look". The eye thing is something that could be related to his hearing loss, or just something on its own, but they may want to see what is going on with his eye since we are already getting the scans. The Geneticist was able to schedule Peter an eye exam, and THAT Dr. will help determine which views are needed during the CT scan, and also feed info back to genetics about which genetic screening tests to order for the blood to be drawn. I just have to get myself and Peter to the appointments.
So, nothing new, but one more thing checked off the list for CI candidacy. And one more appointment added for next week. I literally ran out of the office to my car because I knew I was barely going to make it home in time to teach my French class. So much revolves around Peter, but my daughters asked me to keep teaching French, and I really enjoy it, so I am trying to keep that going for us. I am hoping to maintain some kind of balance in our lives!
After chatting about medical history, and anything that might be hereditary (like strasbismus), the Dr. examined Peter and was duly charmed. Crawling, pulling up, strong legs, yup. No wierd dimples or pits (didn't expect that question!). No funky birthmarks (except the stork bite). Feet are normal (and big). They said he looked mischiveous, and then agreed that there was something going on with his left eye. Peter 's left eye doesn't seem to turn all the way to the left, so if he is trying to look left he ends up looking a little cross-eyed. The doctor waved different toys around to get Peter to look, but flirt that he is, he just gave her the "look". The eye thing is something that could be related to his hearing loss, or just something on its own, but they may want to see what is going on with his eye since we are already getting the scans. The Geneticist was able to schedule Peter an eye exam, and THAT Dr. will help determine which views are needed during the CT scan, and also feed info back to genetics about which genetic screening tests to order for the blood to be drawn. I just have to get myself and Peter to the appointments.
So, nothing new, but one more thing checked off the list for CI candidacy. And one more appointment added for next week. I literally ran out of the office to my car because I knew I was barely going to make it home in time to teach my French class. So much revolves around Peter, but my daughters asked me to keep teaching French, and I really enjoy it, so I am trying to keep that going for us. I am hoping to maintain some kind of balance in our lives!
Monday, January 7, 2013
Vindication!
Today we had what are hopefully Peter's last hearing aid molds made, and another sound booth test. I talked with the audiologist, T., about how I thought Peter has been responding to my making high-pitched raspberries, and Peter looked up at me when I demonstrated the noise. I told T. how I thought I was getting more reaction to sound, at least the raspberry sound, in the last few days. It hasn't been 100% consistent, and my husband said I was imagining things, but I kept making a big deal out of it anytime it seemed like Peter was reacting to noise I made.
The sound booth test was pretty short, but T. was able to get a consistent response at the louder levels (70 dB) and got some, though not completely consistent responses at 50-55 dB! Peter HAD been reacting to my weird noises! And he was reacting to T.'s "buh, buh, buh. Peter! Where am I?" This is good news, in that it means there is some auditory information being processed. Good to know there is some function in the inner ear, the auditory nerve is being stimulated, and that Peter reacts to and tries to find out where a noise is coming from. Based on all the previous tests, and Peter's behavior in general, we are still thinking that there isn't a lot of speech sound that Peter can hear, but we will take what we can get for now! T. was so happy for Peter, and praised him on the good job. I was happy, and relieved, too. Looking on the Internet one finds all kinds of information about syndromes that may be linked to hearing loss, and it is easy to get freaked out. My latest parananoia was something called "Duane's Syndrome", where the hearing loss is due to a severely malformed or even absent cochlea. A missing or severely malformed cochlea could make a cochlear implant impossible or less likely to be successful, so thankfully the sound booth results point away from something like that. We'll know more when we get the scans at the end of the month, but I was happy to have these "good" results for now!
After the fun of watching elephants playing drums in the sound booth was the ear mold "torture". Gooey cold stuff squeezed into screaming baby's ears. It shouldn't be painful, but Peter didn't like being held tightly or the sensation of the goo. Hopefully it's the last time we need to do that, since it's no fun, and that was the last time the molds were free under the warranty. Sydney and Samantha came with, and got to make their own super bouncy balls out of some ear mold goo that T. squeezed into their palms. They had more fun than Peter did with the pink goo!
The sound booth test was pretty short, but T. was able to get a consistent response at the louder levels (70 dB) and got some, though not completely consistent responses at 50-55 dB! Peter HAD been reacting to my weird noises! And he was reacting to T.'s "buh, buh, buh. Peter! Where am I?" This is good news, in that it means there is some auditory information being processed. Good to know there is some function in the inner ear, the auditory nerve is being stimulated, and that Peter reacts to and tries to find out where a noise is coming from. Based on all the previous tests, and Peter's behavior in general, we are still thinking that there isn't a lot of speech sound that Peter can hear, but we will take what we can get for now! T. was so happy for Peter, and praised him on the good job. I was happy, and relieved, too. Looking on the Internet one finds all kinds of information about syndromes that may be linked to hearing loss, and it is easy to get freaked out. My latest parananoia was something called "Duane's Syndrome", where the hearing loss is due to a severely malformed or even absent cochlea. A missing or severely malformed cochlea could make a cochlear implant impossible or less likely to be successful, so thankfully the sound booth results point away from something like that. We'll know more when we get the scans at the end of the month, but I was happy to have these "good" results for now!
After the fun of watching elephants playing drums in the sound booth was the ear mold "torture". Gooey cold stuff squeezed into screaming baby's ears. It shouldn't be painful, but Peter didn't like being held tightly or the sensation of the goo. Hopefully it's the last time we need to do that, since it's no fun, and that was the last time the molds were free under the warranty. Sydney and Samantha came with, and got to make their own super bouncy balls out of some ear mold goo that T. squeezed into their palms. They had more fun than Peter did with the pink goo!
Friday, January 4, 2013
What a day!
Yesterday was bittersweet. I wrapped up the procedure of resigning as treasurer of my younger daughter's preschool, and withdrawing her, closing that chapter of my life. But I was also able to schedule Peter's Genetic consultation, and his MRI and CTscans! And I think Peter signed FIRE!
I know the next six months of my life will be hectic enough with Peter, and I decided I really didn't need the added stress that the co-op was bringing to my life. And to start those six months of hectic...some of the things to do for CI candidacy evaluation.
First we will be getting our Genetics consult. This is not required for CI candidacy, but if they do identify something like a Connexin 26 or 30 deletion (which indicates ONLY cochlear issues, and no other health problems) then the doctors have a really good idea of what they will be dealing with inside the ear. Genetics can also help identify or rule out many syndromes associated with hearing loss, so we can either breathe a sigh of relief, or get a heads up for future things to watch for. If there is a genetic recessive cause for Peter's hearing loss, his sisters might be carriers of the gene. This won't matter to them, but when they are older and ready to have their own kids they might want to be tested. The Consult is next week, and if they determine Peter needs the tests, they can order the blood draw to be done while Peter is sedated for the scans. I am glad they are able to coordinate everything so easily, and that everyone was so understanding about my desire to avoid a scary needle experience if possible.
Later this month we will get both an MRI and a CT scan. They do them one after the other, and Peter will be sedated for them so he will be still. Sedation is scary to me. But I even worry about the fasting before sedation! Hungry babies are no fun! The first scan will be at 1:15, and we have to be at the hospital by 12:15. Peter can't eat solid food after 5:15 AM, but can nurse until 9:15 AM. Then he can have a little bit of water, Pedialyte, or apple juice until 11 (that will be interesting, as he had never had Pedialyte or apple juice). I am sure it will be fine, but moms worry, right?
And to wrap this up on a bright note, Peter is obsessed with our fireplaces, and has started reaching towards them, but with his palm facing him, which is the ASL sign for FIRE!!
I know the next six months of my life will be hectic enough with Peter, and I decided I really didn't need the added stress that the co-op was bringing to my life. And to start those six months of hectic...some of the things to do for CI candidacy evaluation.
First we will be getting our Genetics consult. This is not required for CI candidacy, but if they do identify something like a Connexin 26 or 30 deletion (which indicates ONLY cochlear issues, and no other health problems) then the doctors have a really good idea of what they will be dealing with inside the ear. Genetics can also help identify or rule out many syndromes associated with hearing loss, so we can either breathe a sigh of relief, or get a heads up for future things to watch for. If there is a genetic recessive cause for Peter's hearing loss, his sisters might be carriers of the gene. This won't matter to them, but when they are older and ready to have their own kids they might want to be tested. The Consult is next week, and if they determine Peter needs the tests, they can order the blood draw to be done while Peter is sedated for the scans. I am glad they are able to coordinate everything so easily, and that everyone was so understanding about my desire to avoid a scary needle experience if possible.
Later this month we will get both an MRI and a CT scan. They do them one after the other, and Peter will be sedated for them so he will be still. Sedation is scary to me. But I even worry about the fasting before sedation! Hungry babies are no fun! The first scan will be at 1:15, and we have to be at the hospital by 12:15. Peter can't eat solid food after 5:15 AM, but can nurse until 9:15 AM. Then he can have a little bit of water, Pedialyte, or apple juice until 11 (that will be interesting, as he had never had Pedialyte or apple juice). I am sure it will be fine, but moms worry, right?
And to wrap this up on a bright note, Peter is obsessed with our fireplaces, and has started reaching towards them, but with his palm facing him, which is the ASL sign for FIRE!!
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