Author: mommyinchargeblog

Our Hearing Loss Journey

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In honor of Deaf Awareness Month, I wanted to share with you all in more detail about our journey with Rhett’s hearing loss. I know I have shared bits and pieces throughout previous blog posts, but I wanted to take the time to focus on hearing loss specifically, and share how that has affected Rhett and our family summed up into one post.

I am going to start from the very beginning. We found out about Rhett’s hearing loss very early on. A few days after birth, once Rhett had been transported from the hospital he was born at to the children’s hospital right down the road, Rhett had a CT scan to find out what was going on with his nasal passages. It was after the scan that we found out about Rhett’s inner ear abnormalities and how that could affect his hearing. This scan told us that Rhett had a malformed cochlea in his left ear and that he was missing his semi-circular canals in both ears. It was also after this scan that we were told it was highly suspected that Rhett had CHARGE Syndrome. This news hit me like a ton of bricks. There were so many unknowns and I just couldn’t wrap my head around my new sweet baby having to face so many challenges. Even though I knew hearing loss was very likely, I prayed that was not the case. I asked God to please let him have hearing. I could not imagine how in the world I was going to be able to parent a child with hearing loss. So I prayed very hard for 2 days that Rhett was able to hear.

The day that Rhett had surgery to have the trach placed, he also had an ABR hearing test done while under anesthesia. An ABR shows the brain’s response to sound which lets us know what his level of hearing is. Hearing is measured in ranges based on the pitch and volume of a sound. The ranges of hearing loss goes from mild-moderate, moderate-severe, and severe-profound. When you are in the severe-profound range you are considered deaf. The results of the ABR were that Rhett had mild-moderate loss in his right ear and severe-profound loss in his left. While this was not the results I had hoped for, I remember being so relieved. I think I knew deep down he was going to have some degree of hearing loss based on his anatomy, but he was not completely deaf. He had some useful hearing, and I was so thankful for that. The plan was to have him fitted for a hearing aid in his right ear, and begin therapy to help us learn how to most efficiently utilize the hearing that he had. We were told that a hearing aid on the left ear would not benefit him since his hearing loss was so severe, and that he also would not benefit from a Cochlear Implant in that ear because his anatomy was not typical. We were also told at that time that he did not have an auditory nerve in his left ear, and you can not do a Cochlear Implant without having an auditory nerve.

A month or so after being discharged from the NICU, Rhett had an appointment with audiology to check his hearing and to be fitted for his first hearing aid. We tried to do another ABR test while Rhett was napping in my arms, but it was difficult to keep him asleep with all of the things attached to his head. The information from this test, what information we could get, was pretty consistent with the other ABR which let our audiologist know where to start with programming his hearing aid. I remember during that visit I had to choose the color of the outer part of the aid and also the color ear molds. I tried to match the outer part as close as possible to his hair color and I chose clear ear molds. I remember thinking how Rhett had so many accessories already with the trach and g-tube that I didn’t want to bring attention to one more thing. I guess that was me being vain. I love that sweet little hearing aid and the sound it gave to Rhett, but I did regret the colors I chose on several occasions as little ones do not always leave their devices in their ears. When you have such a neutral color, it tends to blend in with everything. Talk about having a heart attack several times because the aid had been lost. I have even pulled over on the side of 52 several times to frantically search my car for a missing hearing aid, but these are stories for another time.

We monitored and tested his hearing pretty frequently the first few years. He had to go back to audiology every couple of months to have new ear molds made since his little ears grew and changed so quickly over the first few years. We have had some great audiologists, and we spent the first 3 years of his life in therapy with an early interventionist who specializes in children with hearing loss in the birth to 3 years age range. Our early intervention teacher, Preston, gave me so much guidance the first 3 years. She helped me focus on specific goals for Rhett’s language development, and also helped me learn so many signs. I will forever be grateful for her.

We were initially told that Rhett would not be a candidate for a Cochlear Implant in his left ear because an auditory nerve was not visible. Once we started traveling to Cincinnati for Rhett’s medical care, we learned that a CI for his left ear was an option. Rhett does have an auditory nerve to the left ear, but it is small. The doctors at Cincinnati are so familiar with children who have CHARGE that they were confident that Rhett would benefit from a CI in that ear, and he has. We are still unsure of what speech sounds he can actually hear with that ear, but we do know he is having some level of hearing and understanding through his Cochlear Implant.

We put off going forward with Rhett’s Cochlear Implant surgery because we were so focused on his airway for so long. Once we were at a point of his airway management that we knew we just needed to give him time to grow before his trach could be removed, we decided to then move forward with the left CI surgery. He was implanted in September of 2018, and activated in October of 2018. He has had sound to that ear for two years now, and in the last 6 months I’ve been confident that he is getting some level of hearing to that ear.

Right after surgery and activation, we spent our time and audiology appointments focused on maximizing the use of his new implant. During this time we sort of neglected his right ear. I started to notice Rhett responding less and less to people speaking, but I honestly thought he was being a toddler and ignoring us when he was focused on playing. Boy was I wrong and I still kick myself for not seeking more information about his right ear. During an appointment that we were checking on his right ear, his audiologist noticed him responding less during booth testing. I figured he was bored or uninterested in the task, but she decided Rhett needed another ABR test to get more information about that ear. Since Rhett was having scopes so frequently, we added that onto one of his routine scopes. Once he had the ABR, we learned that his hearing had regressed from mild-moderate to moderate-severe. I felt so awful because Rhett had been going about life without having the best access to sound, and I don’t know how long that had been going on. We had his hearing aid turned louder and I started paying closer attention to Rhett’s response to sound. Several months later when Rhett was under anesthesia for another scope, he had a repeat ABR done. This time his hearing had regressed even more to the severe-profound range. I cried. I was so heartbroken for him and so mad at myself for not noticing sooner. I was heartbroken because I knew how much he enjoyed songs and animal sounds and I feared he would miss out on that now that his hearing loss was to the point of deafness. He had his hearing aid turned up to the max, but often times having it louder does not help with hearing sound clearly. He wore his hearing aid at the max level for almost a year before finally having the second implant done. Once his hearing loss in that ear was at the severe-profound range, we knew he would most likely benefit from a Cochlear Implant on that ear as well. We began the long process of going through more testing and insurance in order for the surgery to be approved. We finally had surgery scheduled for the spring of this past year, but then COVID happened and postponed it. He was implanted and activated this past June, and he is already doing so well. He is responding quicker and quicker to speech, and I know it is helping so much with his understanding of things. He has also started to become more vocal although sign remains his preferred form of communication.

Rhett currently does Auditory Verbal Therapy twice a week to help him learn how to hear with his devices, speech therapy once a week to work on his communication skills, and twice a week he works with a teacher for the deaf and hard of hearing to learn new signs and vocabulary. He is a busy boy and a lot goes into helping him communicate as effectively as possible. Getting a Cochlear Implant was the best decision for him, but it is certainly not an easy fix to his hearing loss. Rhett is deaf with or without the Cochlear Implants, but they are a tool to help him best access language. We are using what is called a total communication approach to Rhett’s language development which uses a combination of spoken language, sign language, and pictures. Rhett is doing so well, but he still has a long road ahead. This journey has been hard, but it has taught me so much. My biggest take away from Rhett’s hearing loss journey is the never ending work he puts into understanding language. Let’s all learn a lesson from Rhett and work hard with whatever God gives us.

Food for Thought

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As a parent, there are many times you say things you would have never imagined saying. Kids can definitely do some interesting things which make for some interesting phrases. There are phrases that you expect to say as a parent, but when you are a parent to a child who happens to have special needs, you wonder if you will ever say those things. There are many phrases that seem so normal for a parent to say, but I often wonder if I will ever get the chance to say them to Rhett.

Rhett is always ready to surprise me and do things to catch me off guard. That is part of the beauty of this journey. You do not take anything for granted. Just the other day we got to check another typical parenting phrase off our list. It took me by such a surprise that I had to take a moment to just laugh. Dale was feeding Rhett and Brooks a snack when I hear Dale say, “Rhett, stop taking your brother’s food!” That simple phrase sounds as if it would be so normal in a house with kids. Children always seem to want whatever their sibling has. Well let me tell you, I am not even sure if I could have imagined that phrase being said in our house even 6 months ago. One of the most difficult parts of our journey with Rhett has been his feeding difficulties. When he was a baby, he would silently aspirate small amounts of his milk and would get tired so quickly when trying to take a bottle. Because drinking a bottle was so uncomfortable for him, he began refusing the bottle around 5 months old. He basically did not eat anything by mouth for the first 2 years of life and was fed 100% of his nutrition through his g-tube. He was in feeding therapy multiple times a week to help him learn to not be afraid of food. Many other parents and therapists constantly had to remind me that the journey to learn how to eat was a marathon and not a sprint, and there are no truer words than that. There was much frustration, stress, and tears along the way, and it was all to get to the place where he is today. He has been eating the majority of his calories by mouth for over a year now, but has gone without any g-tube supplementation for about a month. We still use his tube for water, but we are hoping he can ditch the feeding tube once he learns how to better coordinate his drinking. There will be more therapy in his future, but he has already come such a long way. What makes me the most excited is that eating has finally become something he enjoys. I can now trust that when he says he’s all done eating it is because he is full and not because he is not enjoying the task. I am so excited that he is at the point that he likes food so much that he will take food that doesn’t even belong to him! For some this might not seem like a huge deal, but for our family it is the result of so much hard work, patience, and perseverance.

Sweet Blessings

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I am working on sharing more. Especially the inch stones that we totally live for. Being a mom to a child with unique needs has taught me so much about how to not take anything for granted. I hope that I can help you also see the beauty in the small things. I hope I can help you to also not take things for granted. I hope I can show you the beauty of our life. I hope you can see God’s faithful hand in any circumstance.

I am writing tonight because, in the midst of my mind spiraling to a place it didn’t need to go, God brought me back to the here and now in the best way possible. I am writing tonight because I had the most amazing thing happen, and I do not want to ever for one second forget this moment. I am writing for a reminder to myself, but also to share with you, again, how amazing God is.

Tonight I am feeling extra tired, and I was dwelling in all that I need to do tomorrow. While I am so thankful and relieved from the news of Rhett’s scopes, I was worrying about how busy tomorrow is going to be with therapy, a well check appointment for Brooks, and an audiology mapping for Rhett. I was thinking about how Rhett starts school on Monday in person with a ton of virtual therapies mixed in thanks to COVID. I also start work Monday, and I was starting to feel in over my head. I was in a moment of stress over Rhett’s communication and how I can help him learn speech. Am I talking enough? Am I doing his therapy enough? To be honest, I have been having a hard time on the best approach to take with Rhett. We chose the cochlear implants because that is truly what is best for Rhett’s sensory development, but that doesn’t mean I need to try to force speech. All of this realization came to me in one simple sign. The sweetest phrase I have waited my entire motherhood journey to “hear” or see. For the first time, Rhett responded “I love you” back in sign language when I said and signed it to him.

I have never doubted that Rhett loves me. He constantly shows it in his own unique way. But seeing that sweet little sign just brought me back to reality and to what really matters. Rhett is amazing. I don’t need to try to change him to fit what the world thinks he needs to be. I need to change the world for him. At the end of the day, I want and need Rhett to communicate. Instead of putting my time and effort for a sound that honestly isn’t truly meaningful, I need to put that energy into enriching his sign vocabulary.

One sweet little sign was all I needed to remind me that Rhett is in charge. He takes the lead on his life, and I will follow that lead. Sign language is beautiful. If that is his choice for communication then I will do my best to become fluent in sign. Brooks is only a year old and is well on his way to being bilingual in ASL and English. I encourage you to learn some sign so that you have the ability to communicate with Rhett. I encourage you to help this world be a more accommodating place for those with disabilities.

Thank you, God, for the sweetest blessing tonight that brought me back to reality. Rhett, I will do my best to change the world for you.

Let’s Talk Disability

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Let me preface this post by saying that what I have written is based on what I have been thinking and feeling. I have been listening, researching, and reflecting from others who either have disabilities or from other parents who have children with disabilities. I am bringing this topic up because I think it is one that needs to be discussed more frequently so that it is not looked upon with negative connotations.

So the word I want to discuss today is “disability.” I will admit, this word has been a difficult one for me to accept when it comes to Rhett. In my mind, he can do absolutely anything he wants to do, which is true. The way he accomplishes things may look different than what others do, but he can still reach any goal he wishes. The word disability has become sort of taboo, which is what needs to change. I have had a lot of difficulty accepting that word as a term to describe Rhett, but why? Just because he has disabilities does not make him less. It does not change who he is and how amazing he is. It’s just another word to describe his uniqueness. Now I’m getting off my point. What I am trying to say is that the word disability should not be treated as a bad word. It is a word to describe a person, but the disability is not the person.

Let’s take a look at what the word disability means. The prefix “dis” means being the opposite. For example dislike means to not like something. So disability means not having the ability. One of Rhett’s disabilities is deafness. It has taken me a long time to say that word when talking about Rhett and his hearing loss, but it is the truth. Rhett does not have the ability to hear (without devices), therefore, has a disability of deafness. Now the point I want to make is that Rhett is deaf, but being deaf does not define his abilities. He is still able to communicate, learn, play, and be a kid. Having a disability does not mean he does not have many abilities, but those abilities may look different than what you are used to. His abilities might shine through with the support of an interpreter or special devices like his Cochlear Implants, but the abilities are there. Some people may have a disability of being unable to walk, but they are able to get around with a wheelchair. Some people may have a disability of blindness, but they can learn to read with a special text or walk using a cane. Some people may have a learning disability, but they are still able to learn when taught with certain modifications. With all that being said, a person who has a disability may need accommodations in order to accomplish all they are able to do.

People with disabilities can teach us important lessons. They show us that there is not one right way to do something or reach a goal. They show us that though there may be barriers or challenges, they are still able to do so many things. It’s time to look past the word disability being a negative way to describe part of a person. It is time we all acknowledge when someone has a disability, recognize there may be barriers for them, but see the person for all their amazing abilities. Let’s embrace the term in a positive light so that we may have a more accepting and inclusive world for those who have disabilities.

Trash the Trach

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Wow. What a day. I am laying in a hospital bed with my trach free child, and my mind is going back to the very beginning. I am thinking back to all the things along the way that got us to this point, and it brings tears to my eyes to think about all he has been through. All we have been through. It’s a lot. My mind goes back to the NICU days. To the day Dale and I met with the ENT surgeon and decided that the best chance for Rhett was to give him the trach. How I HATED the trach for so long. All the suctioning. All the hauling around so much medical supplies to keep Rhett safe. Not being able to leave my house with Rhett unless someone could go with me so that I could ride in the back seat to suction as needed. Those early days seem so long ago, yet they seem like yesterday all in the same. As the years went on and we learned more and more about his airway, I hated the trach a little less and less. Because of the trach, Rhett has never had to struggle to breathe. Since he never had to worry about trying to breathe through his narrow airway, his body had the energy to grow and thrive in other areas. We finally got to the point that the trach didn’t seem like such a huge deal. I still wanted it gone, but it was no longer controlling my life. I could go places with just me and Rhett. The suctioning happened less and less until not at all in the last 3 months. My heart no longer beat out of my chest for trach changes, and I had grown to really appreciate the trach. And now it’s gone. And suddenly I’m overcome with so many emotions. I was not sure if we would ever make it to this day, and yet here we are. Rhett is beside me soundly sleeping without the trach, and it is the most beautiful sight.

Wednesday, July 15, 2020

I’ll start from the beginning of today. Rhett had a rough night last night, and I honestly think he is at that point where he knows where we are and what happens when we come here. I always tell him in advance to try to prepare him, but I don’t think he fully grasps it all until we have the long car ride and are in the hotel. He was sassy for all the nurses and doctors this morning, and I can’t say I blame him. After getting a swab stuck in your nose 3 times over the last month and a half due to COVID, I think you earn your right to be sassy. One of the great things of doing procedures during this time is the OR seems to pretty much run on schedule. The waiting room was also bare, and it seems nice and odd all in the same. I was a nervous wreck waiting for the scopes to be over. I always am, but this time I knew we had the possibility of decannulation. My hopes were already high, and I was not prepared for negative news had that been the case. The doctors called us to a private room as they always do to go over the pictures they took during the scopes. When we entered the room, Rhett’s ENT was smiling behind her mask. She was completely happy with how his airway looked, and was excited to share how it had never looked this good. The pulmonologist even compared his pictures to what a typical airway looks like. If you have learned anything about Rhett and CHARGE it’s that their anatomy often times looks anything but typical. They were both in agreement that the decannulation trial would happen today as scheduled.

We went to recovery to find Rhett still snoozing which is the norm for him after anesthesia. He normally wants to continue to sleep even after the anesthesia should be worn off enough for him to wake up. Today I put his cochlear implants on almost immediately after going to the PACU, and he immediately began to stir and wake up. That is super encouraging seeing the difference his new implant is having on his hearing. We soon left recovery to go to our room on the complex airway unit, and we waited a bit for Rhett to wake up even more. After an hour or so, it was time. The team of nurses and doctors came in to talk us through and supervise removing his trach for good! The trach came out, and Rhett has been doing amazing. As long as he keeps up his sats through the night, the decannulation will be permanent.

Thursday, July 16, 2020

Today was an uneventful day, which is exactly what you want in the hospital. The more boring, the better. Rhett came off all monitors, and was able to get up and play. We even got to leave the room to walk around, and Rhett got to ride around in a little car. Each time vitals were taken, Rhett was doing amazing. The nurses had him a little party, and he got to change the number of how many kids have gotten their trach out this year. Rhett was number 11 for this year at Cincinnati. He went to sleep on all monitors that night, and his sats continued to be exactly as they should be. It still amazes me that Rhett is breathing all on his own, just like you and me.

Friday, July 17, 2020

It’s Friday and it’s official! The trach is gone for good!! Rhett has been discharged, and now we are killing time before his audiology appointment for his new Cochlear Implant. At audiology, Rhett did some booth testing with his new implant on. It is amazing the difference this implant has had so far on his hearing. He is hearing sounds that he has never responded to before!! The audiologist gave Rhett 3 more programs to work through before his next mapping appointment. I am so excited to see the growth in his hearing over the next month.

I know 2020 has not been a good year for most, but this year will always hold a special place in our heart. 2020 has been Rhett’s year, and I am excited to see his growth being trach free with his new implant. Thank you to everyone for the prayers you have constantly poured over Rhett and our family. Stay tuned as we can now share our journey being trach free! We love you all!