I mentioned in my last post that Logan's ENT was a bit concerned with some of the MRI results. His concern was mainly the presence of white calcium deposits on his brain. Although he wasn't too worried about it, he called a local pediatric neurologist and went ahead and referred us just to check it out. Apparently, this is pretty common in CMV kids.
Those of you that really know me, know that I am a worrier. So, of course, I go and google this and find all the worse case scenarios I can find. Andrew finally talked me out of "researching" this and just waiting to see the doctor.
So, naturally, I was quite excited to go talk to the neurologist today only to get there and be seen by the nurse practitioner because the doctor was out of town. Luckily for us, the nurse practitioner was very good at what he does and went over everything with us and answered our questions well. He even called us back after hours once he spoke to the doctor about Logan!
Basically everything looks fine because the spots were nonspecific and, although he is a little slow in his development, the important thing is that he is developing. At this point, the only concern the white spots cause is an increased risk for seizures. We will hear from the doctor personally next week and go back in 4 months to make sure Logan is still developing appropriately.
Wednesday, April 25, 2012
Tuesday, April 10, 2012
Cochlear Implants, Here We Come!
Today was finally the day to go see Logan's ENT to discuss the results of his MRI from a couple of weeks ago. We were up bright and early this morning to get Jasmine to Grandma's house and make it to Logan's 8 am appointment.... Did I mention I could use some Starbucks right about now?!?
Although there are other concerns with the MRI results, he is a candidate for cochlear implants, which he is eligible for once he is a year old. Unless there is a dramatic change to his hearing, he will get one implant in 3 months and the second 6 months after that. As it was explained to us, since he has some hearing now, it is best to do one at a time so that he can rely on his aided ear to hear while the cochlear implant gets activated and mapped correctly (which could take 3-6 months). This way, he doesn't lose any valuable listening time.
I don't like the idea of him having to go through surgery twice in the span of a year, but if it gives him the best chance to be able to listen and speak, then we will go through whatever we have to. At least by the second time, we will know what to expect.
We go back in 6 weeks to start discussing dates for surgery. In the meantime, we will be going through cochlear implant options with our friends at Sunshine Cottage. I'm glad to finally have some direction here.
Although there are other concerns with the MRI results, he is a candidate for cochlear implants, which he is eligible for once he is a year old. Unless there is a dramatic change to his hearing, he will get one implant in 3 months and the second 6 months after that. As it was explained to us, since he has some hearing now, it is best to do one at a time so that he can rely on his aided ear to hear while the cochlear implant gets activated and mapped correctly (which could take 3-6 months). This way, he doesn't lose any valuable listening time.
I don't like the idea of him having to go through surgery twice in the span of a year, but if it gives him the best chance to be able to listen and speak, then we will go through whatever we have to. At least by the second time, we will know what to expect.
We go back in 6 weeks to start discussing dates for surgery. In the meantime, we will be going through cochlear implant options with our friends at Sunshine Cottage. I'm glad to finally have some direction here.
Saturday, March 31, 2012
Lost and Found
Logan is at the age where he likes to pull his hearing aids out of his ears to chew on them. In recent weeks, he has become quite proficient at this, as well as stealthy. We had several adventures at home looking for his hearing aids on the floor, but it becomes quite another matter when this starts happening outside of our home.
In the last week, we've had two incidents when we thought one of his aids was lost. Last week, Andrew took the kids out to Target while I spent some time with my mom. I get a call from him saying that he got home from the store and he can't find Logan's right hearing aid. So my mom and I rush to meet them at Target, where we search every aisle they went through and look through every shopping cart we can find. After a while, Andrew took the kids home and my mom and I kept the search up. We finally gave up and decided to check the carts outside again on the way to our cars. Incredibly, we found it at the bottom of a cart at the edge of the parking lot.
When I relayed this story to our audiologist, she suggested we use ear gear on his aids to keep them nearby. This is basically a sock that goes over each hearing aid that is tethered to the child's shirt. I happily gave this a try for a few days, but I noticed that Logan took his hearing aids out even more, since it makes them bulkier. After a few days, we stopped using it.
We are back to using the ear gear after losing one again today, but this time at Lowe's. I remember seeing the hearing aid on him when we were in the store, but when we got home only the earpiece was in and not the receiver. AHH! Not Again! We frantically search the truck, his clothes and his seat and then jump back into the truck to rush back to Lowe's. We must have someone watching over us because we found it near the cart return. It has some scuffs on it, like it was run over by a shopping cart, but it still works!
Needless to say, we will be using the ear gear daily and doing regular hearing aid checks throughout the day to make sure he still has them.
In the last week, we've had two incidents when we thought one of his aids was lost. Last week, Andrew took the kids out to Target while I spent some time with my mom. I get a call from him saying that he got home from the store and he can't find Logan's right hearing aid. So my mom and I rush to meet them at Target, where we search every aisle they went through and look through every shopping cart we can find. After a while, Andrew took the kids home and my mom and I kept the search up. We finally gave up and decided to check the carts outside again on the way to our cars. Incredibly, we found it at the bottom of a cart at the edge of the parking lot.
When I relayed this story to our audiologist, she suggested we use ear gear on his aids to keep them nearby. This is basically a sock that goes over each hearing aid that is tethered to the child's shirt. I happily gave this a try for a few days, but I noticed that Logan took his hearing aids out even more, since it makes them bulkier. After a few days, we stopped using it.
We are back to using the ear gear after losing one again today, but this time at Lowe's. I remember seeing the hearing aid on him when we were in the store, but when we got home only the earpiece was in and not the receiver. AHH! Not Again! We frantically search the truck, his clothes and his seat and then jump back into the truck to rush back to Lowe's. We must have someone watching over us because we found it near the cart return. It has some scuffs on it, like it was run over by a shopping cart, but it still works!
Needless to say, we will be using the ear gear daily and doing regular hearing aid checks throughout the day to make sure he still has them.
Friday, March 30, 2012
Next steps
Logan's hearing is worse in his right ear, but his left ears seems to be getting worse as well. Since he has profound hearing loss in his right ear, we have already been discussing the possibility of a cochlear implant (at least for that ear) with his ENT.
The first step is to see if he is even a good candidate for an implant. So we had to schedule a sedated MRI so his Dr. can see what his cochlea and nerves look like. We had this scheduled for the end of February, but of course, Logan got sick the week before we were going to have it done and we had to reschedule. Unfortunately, that meant we had to wait another month to get it done.
We finally had his MRI done this past Wednesday. It was so hard seeing them put an IV on my little guy, but I know that is nothing to what it will be if he gets his surgery done! Everything went smoothly and we were home within an hour after the test was completed. Now we have to wait for our ENT appointment to get the results. I swear it feels like we are always waiting. We just want to know what direction we are going!
The first step is to see if he is even a good candidate for an implant. So we had to schedule a sedated MRI so his Dr. can see what his cochlea and nerves look like. We had this scheduled for the end of February, but of course, Logan got sick the week before we were going to have it done and we had to reschedule. Unfortunately, that meant we had to wait another month to get it done.
We finally had his MRI done this past Wednesday. It was so hard seeing them put an IV on my little guy, but I know that is nothing to what it will be if he gets his surgery done! Everything went smoothly and we were home within an hour after the test was completed. Now we have to wait for our ENT appointment to get the results. I swear it feels like we are always waiting. We just want to know what direction we are going!
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| Logan and Grandma waiting for the MRI to start |
Our Story
This blog is long overdue! Logan is now 9 months old and I've been meaning to start this to document his story and to share with others for so long. Since he was diagnosed, I've taken much comfort in reading the stories of other families and I hope our story can give comfort to others.
We have 1 daughter and were very happy to be adding a son to our family. I can remember how in his first month of life it was both one of the happiest times and one of the hardest and saddest times in my life. He failed his newborn hearing screening 3 times before we were discharged from the hospital. They assured us that we did not need to worry and that this happens quite often. We were sure he just had some fluid in his ears.
When he was 1 week old, we went to get an ABR test done, which he failed. The audiologist suggested we do a repeat ABR when he was a month old, just in case there was still fluid in his ears. As we waited those 3 weeks we did many "hearing tests" on him, such as banging pots together, having his sister yell and anything else we could think of. Every time we thought he had a response, we were so hopeful. The 3 weeks finally passed and there I was with him and the audiologist again. As I knew deep down, they confirmed his hearing loss that day. I was crushed when they told me that he had severe to profound hearing loss in both ears.
Logan was fitted with his first set of hearing aids when he was just 7 weeks old. I will never forget how his face lit up when he actually heard us. But with that joy I also felt so sad thinking about all the things he had been missing.
Logan has come a long way since then. He has so much help that I am so thankful for. He is enrolled in an early childhood program at a great oral deaf school here and has other early childhood intervention services. He is such a happy baby and he loves to babble, which melts my heart knowing his degree of hearing loss.
We have 1 daughter and were very happy to be adding a son to our family. I can remember how in his first month of life it was both one of the happiest times and one of the hardest and saddest times in my life. He failed his newborn hearing screening 3 times before we were discharged from the hospital. They assured us that we did not need to worry and that this happens quite often. We were sure he just had some fluid in his ears.
When he was 1 week old, we went to get an ABR test done, which he failed. The audiologist suggested we do a repeat ABR when he was a month old, just in case there was still fluid in his ears. As we waited those 3 weeks we did many "hearing tests" on him, such as banging pots together, having his sister yell and anything else we could think of. Every time we thought he had a response, we were so hopeful. The 3 weeks finally passed and there I was with him and the audiologist again. As I knew deep down, they confirmed his hearing loss that day. I was crushed when they told me that he had severe to profound hearing loss in both ears.
Logan was fitted with his first set of hearing aids when he was just 7 weeks old. I will never forget how his face lit up when he actually heard us. But with that joy I also felt so sad thinking about all the things he had been missing.
Logan has come a long way since then. He has so much help that I am so thankful for. He is enrolled in an early childhood program at a great oral deaf school here and has other early childhood intervention services. He is such a happy baby and he loves to babble, which melts my heart knowing his degree of hearing loss.
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