Kids are hard. I think that goes for both typical children, and for children who have special needs. There might be more hard things that we go through with Rhett, but sometimes Brooks can be tough too. Whenever you are on the outside looking in and think to yourself, “Having a child like Rhett must be hard,” I want you to remember these things.
Rhett is hard.
He works harder than anyone I know. The amount of hard work and energy he puts into everything he does shows through all of his accomplishments. He has to work harder than most to eat, breathe, walk, and communicate. He works hard day in and day out in all the therapies he has to do. Yes, Rhett is hard. He works hard, that is.
He loves hard. Rhett finds something he loves and then loves it with all his heart. He loves animals, books, and his family. He may not say “I love you” with words, but he says it with his actions. When he runs up for a hug, goes in for a kiss, or grabs you by the hand to lead you where he wants to go, he is showing you his love. Yes, Rhett is hard. He loves hard, that is.
He plays hard. From the moment his eyes open in the morning, to the moment his eyes close at bedtime, he is playing hard all day. He is playing, creating, and learning all day long. He plays just like any other child plays. Yes, Rhett is hard. He plays hard, that is.
I looked up the definition for the word hard, and it actually describes Rhett perfectly. Hard means not easily broken, and if you know anything about Rhett, you know this is true. He is so strong and resilient, and doesn’t let anything keep him down. Rhett is definitely not easily broken. I also found that hard means with a great deal of effort. This also describes Rhett because he puts forth his best effort in everything he does. Rhett is the definition of hard, just not in the way you might think.
Like I said before, being the parent of a child who has special needs can be hard. But parenting in general is hard. Let’s not forget that this journey isn’t just hard for the adults. This journey is hard on Rhett too. But let’s shift our focus to recognizing the effort it takes for Rhett to thrive and be successful in this world. This is a message to Rhett, but also to myself. Life is hard, but you can do hard things.
Philippians 4:13 I can do all things through Christ who strengthens me.
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.
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.
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.
I hope everyone enjoyed their 4th of July weekend!! We sure had a fun time at the lake. The boys played hard and went swimming, and memories were made at our favorite place.
I sort of left you all hanging after my post about answered prayers from our trip a couple of weeks ago in Cincinnati. I said I had more details to share, but I have yet to sit down and share the details of what we learned. I needed some time to process everything because it almost feels too good to be true. But I need my prayer warriors to come together for our Rhett as we embark on another adventure very soon.
We will be leaving to travel back to Cincinnati in a week from today. We had already planned on traveling back to adjust his programs on his new implant, but we quickly added some more things to this trip after our findings from our last trip. The last time we were in Cincinnati, Rhett had a capped sleep study. He had many wires and monitors attached to him so that he could be fully monitored while asleep with the cap over his trach. He had to do this to check for any apnea episodes and to make sure he was safe breathing through his upper airway while asleep. He did great while the doctors and nurses attached everything to his body, and quickly fell asleep. He slept all night long, and we even had to wake him up the next morning. If you know Rhett, he is always our wake up call and not typically the other way around. Normally it takes about 4-6 weeks for sleep studies to be reviewed and read by the doctors. The lead nurse conducting the study knew we had an appointment with ENT the next day, and put a rush on his study to be read. We got the results that next day, which was pretty unexpected, but we were so relieved. Our ENT went over the results with us, but since he is the ENT that follows Rhett for his ears, we had to wait until his ENT that covers his airway reviewed the results. I immediately emailed the nurse practitioner that I communicate pretty frequently with, and she responded with some very positive emails, but again we had to wait for Rhett’s airway ENT and Pulmonologist to review the results of the study before we knew what next steps would be. The doctors quickly reviewed results and let us know that the next steps for Rhett’s airway management would be to scope his airway and do a decannulation trial. That means we will remove the trach and he will be monitored in the hospital for 48 hours to make sure he does not go into any distress when breathing without the trach. We were extremely excited to learn of this plan, especially since it has been a long time coming. We have waited so long to get to this point, and it almost feels to good to be true to know we are so close to Rhett being trach free. I decided to wait before sharing details until I knew more of a timeline for when things would happen. Cincinnati is truly amazing for scheduling things when we already have trips planned. I was expecting the scopes to take place in a couple of months, but somehow they were able to get them scheduled for next Wednesday! They knew we would be there on Friday for more Cochlear Implant mapping, so they got Rhett scheduled for scopes during this trip to hopefully help cut down on our travels.
That was super wordy and detailed. So in case I lost you, I will summarize what will happen next week when we are in Cincinnati. We will travel back to Cincinnati next Tuesday, and Rhett will be scoped next Wednesday. That means he will go under anesthesia and have his airway and lungs checked out. As long as everything looks good with his scopes, he will be admitted to the Complex Airway Unit. While he is admitted, the doctors will remove his trach and Rhett will be monitored for 48 hours. As long as Rhett does well with his breathing during this time, he will leave the hospital without a trach. Yes!! You read that correctly!! Rhett could possibly come home trach free after next week!!! That still sounds too good to be true, and I do not want to get my hopes up yet. We are always hoping for the best, though. Rhett will also have his Cochlear Implant adjusted during this trip, and after this visit we are hoping to be ready to transfer care to our local audiologist. Rhett is doing fantastic with his new implant, and we are so excited to see him grow with his new device.
Please pray for our trip next week. Pray that Rhett’s scopes will go well, and the doctors are pleased with what they see. Rhett will have to do another COVID test, and it has been really terrible each time he has had to do them. Pray he handles it well, and that it is again negative. Pray that Rhett will breathe easy once the trach is removed, and that he does not go into any distress breathing on his own. Pray that this is the trip that Rhett will come home without the trach. Pray that Rhett continues to respond well with his new implant, and that we are able to work him through the programs to give him the best hearing possible.
Thank you for keeping up with the craziness of our life, and for following along Rhett’s journey with us. We are so thankful for all of your prayers and support as we work through the medical puzzle of Rhett.