Today we met with the cochlear implant coordinator, one of the surgeons, and two other doctors to discuss Lil Bill and the possibility of him getting the implants. Billy, Lil Bill, and I walked into the room and all four of the cochlear implant team members were sitting in there, waiting for us, we were not expecting it to be so many people.
The appointment was very informative. As you may or may not know there is controversy about the cochlear implants. Both sides have very strong opinions on if they are right or wrong. So I was a little nervous going into this appointment, meeting with the cochlear implant team, that we would receive bias information. I was pleasantly surprised when that was not the case.
The surgeon asked us what our goals were for Lil Bill. He talked to us about ASL and the culture of the deaf and we explored that option. He then talked to us about the implants and what that would be for Lil Bill. We discussed our fears of relying on only ASL. Due to Lil Bill's spastic quadriplegic CP, he is very tight. His arms are more affected than his legs. We believe relying on signing as a main means of communication has the potential to be very difficult for him. That was initially our motivating factor for wanting the implants. It was not because I didn't feel like learning ASL and adapting to my son, because we are still open to learning it. I just think every family's situation is so different. Some families may chose ASL and not want to get implants, and I think it is great for them, that is their choice. However for our family, we think what would be best for us is to get Lil Bill the implants. And that is our choice and we are OK with that. It is all about people's circumstances, and everyone has different ones. So I was happy that the surgeon took the time to explore all options with us.
I keep thinking about something the surgeon said. Billy told him that he thinks Lil Bill hears more than we give him credit for. The surgeon said, that he certainly does hear. But due to his auditory neuropathy, he hears static and it is all mushed together. He does not hear what we hear when we talk to each other. He currently does not process language in such a way that he can understand it. He said that if he hears mush, he will speak mush. That actually made me feel better and hopeful. Lil Bill really does try to talk but does not have much of a vocabulary. He has said mom, and actually said dad today for the first time! :) But he does not say either regularly. When he stops hearing mush, he will probably stop speaking it.
Now before saying what I am about to, keep in mind we still need to have an MRI, a cat scan, and genetic tests throughout the next month to officially qualify Lil Bill to be an official candidate for the implants, but the team agreed today that Lil Bill seems like a great candidate. With all the medical information they presently have and from watching him, they think he would do really well with the implants. They kept saying today that he tries to communicate, he is very vocal and has such a strong desire to interact. He really does, he is truly a people person, he must get that from his dad! ha! It was also relieving to here that they do not believe some of Lil Bill's other issues will hold him back from talking verbally (such as his left vocal cord paralysis). While he does have other limitations, they are remaining positive so I am as well!
I was also very surprised that they said the cochlear implant surgery will only take about 2 1/2 hours. Then they said if all goes as planned, Lil Bill will only be in the hospital over night. I imagined him being in the hospital recovering much longer, that is what I read on the internet (SO HEY IT MUST BE TRUE
RIGHT? (; ) After the surgery, they will turn the implants on 3 weeks later. They wait so long because the area around the implant in tender and if they turn them on right away the sound waves could cause pain. They do not want him to associate sound with pain. Our last tests are done April 15th and if everything comes back ok, they said Lil Bill will be getting the implants in May. That seems so far away and so close all at the same time.
I have never been so scared about something. I mean after today I feel like the chances of the implants working are really really high. But the anticipation is always the worst. Billy and I were talking today about Lil Bill's first surgery. It was the PDA ligation (heart surgery to close a valve in his heart) when he was only 2 weeks old, he was not even a pound and a half. Well we had not time to go through the anticipation. We went into the NICU on a Friday morning to visit him and they told us the surgery was going to be done later that afternoon. That was also the first day I ever kissed him. The surgeon was telling us about the risks of the surgery (including death) and right after that they asked if we wanted to kiss him. It was the most terrifying and beautiful experience. Never how I imagined giving my son his first kiss, but it is our story. It is amazing that there is a surgeon willing to operate on such a tiny baby's tiny heart. We saw the scar afterwards and we couldn't believe how little it was, and that they performed heart surgery through an incision so small. Technology is truly amazing.
Before deciding we were going to get the implants, a reason I did not want to get them was that it seemed unnatural. But then it hit me, what about Lil Bill's story is natural? Even going back to my pregnancy with him. Having to get a cerclage, a pessary, and weekly progesterone shots. Then after he was born, being put on a ventilator immediately, and staying that way for 12 weeks. Several surgeries, and machines were keeping him alive for months. He was on the jet ventilator for a long time. The jet ventilator pumps 420 breaths into the person on it per a MINUTE. What the hell is natural about that? So if we wanted to stick to things that were only natural, honestly Lil Bill probably would not have survived long enough to have the option to be saved. My weak ass cervix would have done it what was naturally trying to do weeks prior. Just like what it did with our first pregnancy with Aiden. We have always used the technology and resources available to give Lil Bill the best shot. So why stop now if we believe this is the best shot for him? Unnatural is natural to us.
So our plan is to stay in the day, not worry about May and the surgery until May and the surgery gets here. I am just going to enjoy my baby boy, and his happiness.
Every single one of Lil Bill's issues can be traced back to him being born premature, at only 23 weeks and 1 day. All of the 'unnatural' things that kept Lil Bill alive were initially determined a success through research. The March of Dimes funds research to help maintain a full term pregnancy and helps babies get healthy. We started participating in the March for Babies walk after we lost Aiden. We walked in it the first year with Aiden in our hearts. We walked in it the second year with Aiden still in our hearts and Lil Bill in our arms. This year we plan to do the same. Please help us and join us on our team to walk. You can also donate to our team and all the money raised will go directly to the March of Dimes.
CLICK HERE TO CHECK OUT OUR TEAM PAGE TO SIGN UP TO WALK WITH US OR DONATE TO OUR TEAM!
Friday, March 7, 2014
Tuesday, March 4, 2014
he is not broken...
Well there is lots and lots going on in our world this month.
We are kicking off the month with a G.I. appointment this Thursday, followed by an appointment with a cochlear implant surgeon on Friday. Why are we meeting with a cochlear implant surgeon you ask? Good question, I will get to that later in the post.
The following week we have an IFSP plan meeting with several different parties to revise Lil Bill's treatment and goals plan. We are also going to be seeing the eye doctor that week as well. (Keep your fingers crossed for no glasses! We already have a hell of a time trying to keep hearing aids and braces on our boy!)
The following week Lil Bill will go under general anesthesia for an MRI, a cat scan, a bronchoscope, and to repair his frenulum. The MRI and cat scan are screening for the cochlear implant candidacy. Since he was going under general anesthesia his ENT doctor wanted to ad a bronchoscope to check on his airway diseases and to see if his left vocal cord is still paralyzed. He also wanted to fix his frenulum. The frenulum is a little piece of tissue maybe?? Basically its the thing that connects your tongue to the bottom of your mouth. Lil Bill was tongue tied and actually broke that piece on his tooth, tried to fix it himself ha! But it is a little messy so they are going to fix it up too.
We will be adding a pre op appointment before all the tests at some point, just do not know when.
We are going to end the month with Lil Bill's primary care doctor whom we really like! This is a very busy month for us. I do not think we have had so much going on in a month since Lil Bill came home from the NICU. We will get through it. Hopefully Lil Bill will not get sick this month, which would many appointments on to our schedule!
He has not been sick in three weeks (knock on wood!) This season (since Octoberish) has not been so kind to my little man. He has been sick more than he hasn't. When he gets sick he coughs so hard and so frequently he throws up so much. Because of this he has not gained weight at all. He gets weighed at daycare frequently and we have noticed a slight rise in his weight. I was so happy! I hope it stays that way. I am interested to see how much he ways at his G.I. appointment later this week.
SOOO we are meeting with the cochlear implant surgeon, and doing a bunch of tests for it?? For my readers to who do not catch on quickly, or rather because I never formally wrote this, we have decided to get the implants! After much research, talking with professionals, and other families who have gotten their child the implants we choose to do so. It is what we think would benefit Lil Bill the most. Due to his hearing loss, and his auditory neuropathy, we do not know exactly how much or what he hears.
It was best explained to me like this. You know when a radio station goes staticy and you can only hear bits and pieces of the song? Or when its just straight static and you can't hear any of the song?? Well that's exactly what auditory neuropathy is. We do not know how severe Lil Bill's is. We know that sometimes we could scream his name from a room over and he will hear it. We know that sometimes we can scream his name from behind him and he won't even notice. He has what we like to call hearing moments.
Here is a link. The links under number 1 are what the cochlear implants will sound like. The links under number two are similar to what he currently hears.
http://www.healthaffairs.uci.edu/hesp/simulations/simulationsmain.htm
I will never forget the first time we just knew he heard. We were at his mom mom's house and the fire alarm went off when someone was cooking. Lil Bill jumped and looked around and actually seemed to find the sound amusing. Prob the only person on the planet to find that sound amusing huh? So we were so excited and went and stood right next to the fire alarm with him. Let's make one thing clear, there was no fire! But we were so happy for him and he seemed so happy to hear something.
Since then, it is very apparent that he does hear some times. There is no denying that. However with his booth tests, with his hearing aids on the highest settings, there is still not response until 70-75 decibels. He displays patterns of babies and toddlers who can't hear. One being, his vocalizations. He used to babble, he used to vocalize so much. He still will occasionally, but compared to how he used it, he does it so so much less. This is because he can not hear himself and he is not getting reinforcement from his audio sense that he is actually making sounds. He mimics us occasionally. Simple sounds like AH and OH. While he has say hi, yea, no, and mum (yes mum, he picked up a British accent somewhere), he does not say any on the regular. He does try to communicate though. He eye gazes and he grabs at things when he has the physical ability to do so.
Due to his physical limitations, we believe that signing would be difficult for him. Billy and I have thought long and hard about this and had several discussions and we believe it is what is best for our son. Based on his hearing loss, abrs, booth tests, and lack of progress with speech, he is a candidate for the implants. However several other tests need to be done, such as the MRI and cat scan mentioned above and we have to get genetic tests done. If all these tests come back ok then at some point in the near future Lil Bill will receive the cochlear implants.
I am so excited yet so anxious and scared. To give my son the gift of being able to hear which technology has made possible is amazing. Though I feel self doubt in wondering if we made the right choice for him. We have made so many medical and developmental decisions for him and I always think about them after hoping we did the right thing. But to implant him with something that will take away all of the natural hearing he has in order for him to hear everything more effectively, wow its a big decision. My biggest fear is that years down the road he will think we were trying to fix him by doing this. I do not want to fix him, he is not broken, I just want to offer him any opportunity I can. He has had it so hard and has overcome such much, and continues to, so gracefully. I admire him for his strength. I just want to make his life easier and this seems like the option to do that.
More to come!
We are kicking off the month with a G.I. appointment this Thursday, followed by an appointment with a cochlear implant surgeon on Friday. Why are we meeting with a cochlear implant surgeon you ask? Good question, I will get to that later in the post.
The following week we have an IFSP plan meeting with several different parties to revise Lil Bill's treatment and goals plan. We are also going to be seeing the eye doctor that week as well. (Keep your fingers crossed for no glasses! We already have a hell of a time trying to keep hearing aids and braces on our boy!)
The following week Lil Bill will go under general anesthesia for an MRI, a cat scan, a bronchoscope, and to repair his frenulum. The MRI and cat scan are screening for the cochlear implant candidacy. Since he was going under general anesthesia his ENT doctor wanted to ad a bronchoscope to check on his airway diseases and to see if his left vocal cord is still paralyzed. He also wanted to fix his frenulum. The frenulum is a little piece of tissue maybe?? Basically its the thing that connects your tongue to the bottom of your mouth. Lil Bill was tongue tied and actually broke that piece on his tooth, tried to fix it himself ha! But it is a little messy so they are going to fix it up too.
We will be adding a pre op appointment before all the tests at some point, just do not know when.
We are going to end the month with Lil Bill's primary care doctor whom we really like! This is a very busy month for us. I do not think we have had so much going on in a month since Lil Bill came home from the NICU. We will get through it. Hopefully Lil Bill will not get sick this month, which would many appointments on to our schedule!
He has not been sick in three weeks (knock on wood!) This season (since Octoberish) has not been so kind to my little man. He has been sick more than he hasn't. When he gets sick he coughs so hard and so frequently he throws up so much. Because of this he has not gained weight at all. He gets weighed at daycare frequently and we have noticed a slight rise in his weight. I was so happy! I hope it stays that way. I am interested to see how much he ways at his G.I. appointment later this week.
SOOO we are meeting with the cochlear implant surgeon, and doing a bunch of tests for it?? For my readers to who do not catch on quickly, or rather because I never formally wrote this, we have decided to get the implants! After much research, talking with professionals, and other families who have gotten their child the implants we choose to do so. It is what we think would benefit Lil Bill the most. Due to his hearing loss, and his auditory neuropathy, we do not know exactly how much or what he hears.
It was best explained to me like this. You know when a radio station goes staticy and you can only hear bits and pieces of the song? Or when its just straight static and you can't hear any of the song?? Well that's exactly what auditory neuropathy is. We do not know how severe Lil Bill's is. We know that sometimes we could scream his name from a room over and he will hear it. We know that sometimes we can scream his name from behind him and he won't even notice. He has what we like to call hearing moments.
Here is a link. The links under number 1 are what the cochlear implants will sound like. The links under number two are similar to what he currently hears.
http://www.healthaffairs.uci.edu/hesp/simulations/simulationsmain.htm
I will never forget the first time we just knew he heard. We were at his mom mom's house and the fire alarm went off when someone was cooking. Lil Bill jumped and looked around and actually seemed to find the sound amusing. Prob the only person on the planet to find that sound amusing huh? So we were so excited and went and stood right next to the fire alarm with him. Let's make one thing clear, there was no fire! But we were so happy for him and he seemed so happy to hear something.
Since then, it is very apparent that he does hear some times. There is no denying that. However with his booth tests, with his hearing aids on the highest settings, there is still not response until 70-75 decibels. He displays patterns of babies and toddlers who can't hear. One being, his vocalizations. He used to babble, he used to vocalize so much. He still will occasionally, but compared to how he used it, he does it so so much less. This is because he can not hear himself and he is not getting reinforcement from his audio sense that he is actually making sounds. He mimics us occasionally. Simple sounds like AH and OH. While he has say hi, yea, no, and mum (yes mum, he picked up a British accent somewhere), he does not say any on the regular. He does try to communicate though. He eye gazes and he grabs at things when he has the physical ability to do so.
Due to his physical limitations, we believe that signing would be difficult for him. Billy and I have thought long and hard about this and had several discussions and we believe it is what is best for our son. Based on his hearing loss, abrs, booth tests, and lack of progress with speech, he is a candidate for the implants. However several other tests need to be done, such as the MRI and cat scan mentioned above and we have to get genetic tests done. If all these tests come back ok then at some point in the near future Lil Bill will receive the cochlear implants.
I am so excited yet so anxious and scared. To give my son the gift of being able to hear which technology has made possible is amazing. Though I feel self doubt in wondering if we made the right choice for him. We have made so many medical and developmental decisions for him and I always think about them after hoping we did the right thing. But to implant him with something that will take away all of the natural hearing he has in order for him to hear everything more effectively, wow its a big decision. My biggest fear is that years down the road he will think we were trying to fix him by doing this. I do not want to fix him, he is not broken, I just want to offer him any opportunity I can. He has had it so hard and has overcome such much, and continues to, so gracefully. I admire him for his strength. I just want to make his life easier and this seems like the option to do that.
More to come!
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