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.
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 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.
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!
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.