Quarantine Life

Hi everyone!  How are you all holding up during this time of quarantine?  To be honest, I feel like life has gotten a lot busier since being stuck at home.  I had planned to write more this year, but I just have not found the time to really sit down and do it.  So here I am, giving you an update on our life and what it is like to be quarantined with a child with complex needs and a baby.

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While I have felt some disappointment, stress, and frustration throughout this time of staying home, it has honestly been the best thing for my family.  We have gotten to spend so much more time just being together without the hustle and bustle of running from one place to the next.  Dale has gotten to spend so much more time with the boys since having to work from home, and it has been so helpful having him tag team all of their needs.  I have gotten so much more snuggle time and play time with Brooks which has been a nice change to the amount of time he was spending in the car running from preschool to therapies and back.  Since being at home, Rhett has matured so much.  He is now writing his name and communicating his wants and needs with sign language more frequently.  He is also interacting more with others, although he loves doing his own thing.  School is a great thing for Rhett, but having some true one on one time where we can focus on certain goals has been wonderful for him.

Even though I am loving being home with my family, it has not been easy.  I have been bombarded with becoming all of Rhett’s people which can be draining, especially when I have to give my attention to Brooks as well.  I am doing my best to give each of them direct attention throughout the day, but that typically leaves me with little to no time for myself.  To say I am exhausted mentally and physically by bedtime would be an understatement.  We are fortunate to be able to do preschool and all of Rhett’s therapies online with video chat, but it sure is tough.  Rhett is doing so well that it would be a huge disservice to not continue with his current development plan and goals.  Since everything has moved to online instead of face to face, I have taken the role as his main support, teacher, and therapist.  I have always been super hands on during all his therapies and carrying them out throughout the week, but it has been a definite learning experience for me to go from being the support during therapies to being the person to carry out the therapy with verbal support from his therapist.  I am not going to lie, I am looking forward to when we can do some face to face therapy so I can take a step back, but for now I will continue on.

Rhett tends to get so much attention with my writing, but please do not let that fool you.  Brooks is a definite momma’s boy, and Rhett’s biggest fan.  He stays right in the middle of the action, and boy does he have a little jealous streak.  I think he is loving having everyone home, and goodness has he grown way too fast.  He can clap, wave, say “hey dog” to all the dogs, is so close to being a true walker, and somehow finds his way into mommy’s and daddy’s bed every single night.  Watching him learn and grow has been the most fun!

As things begin to open up, we will continue to stay at home for the most part.  I see a lot of outside time and lake time in our future for the summer.  We will be anxiously waiting for the call to reschedule Rhett’s Cochlear Implant surgery, and I will keep you posted when we have a date.  I pray you all are staying healthy and sane during this time, and just remember that this too shall pass.

Capping Success

What a crazy few weeks it has been.  We returned from our most recent trip to Cincinnati with some great progress, and then the pandemic hit our world before I had the chance to really type up an update of what is going on in Rhett’s world.  First of all, I truly hope that everyone is staying safe, healthy, and AT HOME!!  I am doing my best to put fear to the back of my mind because I truly do not want to know how this virus could potentially affect Rhett if he were to get it.  I can only imagine that it would hit him very hard since it is a respiratory virus and he has a rather wonky airway.  So if you get the notion to not follow the recommendations, please just think of Rhett and others like him.  Following guidelines will help keep him safe, and to also move us back toward normal.

So enough with the pandemic talk.  Let’s move on to where we are currently with Rhett.  As most of you probably saw, Rhett passed his capping trial on our most recent trip.  This means that Rhett is finally strong enough to breathe completely out of his upper airway, although it is still rather narrow.  The ENT told us after his scope that his airway looks like it should not work.  She even told us that if she had seen Rhett’s airway 5 years ago, she would never have recommended trying out capping.  CHARGE is such an interesting syndrome.  These kids are amazing, and Rhett proved how amazing he his by rocking his capping trial.  What this means for now is that Rhett will continue to have the trach, but we will leave the cap covering it 24/7.  So far he has handled this well, and we have only had to suction him maybe 5 times in the last month that we have been home and capping.  It is still hard for me to believe that we went from suctioning Rhett every 5 minutes when he was a baby to only 5 times in the last month.  This has been life changing!  Next steps will be a capped sleep study to check for any kind of sleep apnea, and then we will have a better idea of a plan from there.  We had the sleep study scheduled for the end of the month when we were supposed to be in Cincinnati again, but that has currently been put on hold.  We also have one scheduled locally in June, and I am thinking that will probably be the quickest we can have it done with all the craziness the Coronavirus has caused.

Rhett was scheduled to have his Cochlear Implant surgery for his right ear on this coming Thursday.  Since this surgery is considered an elective surgery, we have had to cancel for the time being.  We do not have a new date set since no one knows how long the Coronavirus will stick around.  Hopefully things will get back to normal soon so that we can move forward with surgery.  Rhett is making so much progress with his listening skills, and he is beginning to use more expressive communication through sign.   I am hoping to see even more progress with his communication once he has the second implant.  The surgeon is expecting very good results with Rhett’s right ear.  When we implanted the left, we implanted for hopes of sound recognition.  This time we are implanting and expecting him to have speech recognition.  Although Rhett is improving with his listening skills, he has not yet made any true speech.  He is able to make a lot of vowel sounds, but no true words yet.  I would love for Rhett to speak one day, but my ultimate goal with all of this is giving him access to communication.  He currently favors using sign language as his form of expressive communication.  If he continues to choose signing over learning to talk, then that is 100% fine with me.  I just want him to have full access to language and communication.  I have gone back and forth on whether implanting him is the right decision, and I am choosing to have him implanted knowing that I have done everything possible to give him access to language and sound.  He seems to respond and understand better when I use a combination of speech and sign in comparison to when I use one or the other.  Rhett really loves to listen to animal sounds and when I sing songs with him, so that gives me all the reason to implant him and allow him to have continued access to sound.

While we are feeling some disappointment with having to put this week’s surgery on hold, I am thanking God that he is keeping our family healthy during this time.  I know that the hospital is the last place we want to be with all of the germs still running rampant.  I will keep you posted on when I know more of the next steps for Rhett.  I pray you all will continue to stay safe during this confusing time.  I am so thankful today and everyday for all of the doctors, nurses, first responders, and everyone else in the medical field who have chosen a job to help keep us safe.  I thank God everyday for Rhett and for each prayer He answers.

Being a Parent to a Child With a Rare Disease

Being a parent to a child with a rare disease is difficult yet beautiful. It is exhausting yet amazing. It is what drains me physically, mentally, and emotionally while also fills me up with each accomplishment. It is being able to witness God’s miracles on a very regular basis in such small ways, yet being so confused and angry about how God can allow these difficult things to happen to such an innocent child. It’s research, research, research. Always looking for the best specialists, best therapists, and best strategies to help my child reach their full potential. It’s learning a new language along with my child, and teaching them how to communicate in a language that few people know. It’s becoming a nurse, physical therapist, speech therapist, and occupational therapist for my child on top of trying to just be mom. It means days filled with doctors appointments and therapies. It means traveling out of state every few months so that we can see the doctors who specialize in my child’s syndrome. It’s IEP meetings and looking for the school that will fit all of my child’s complex needs, even though he’s not even school age yet. It’s endless amounts of time talking on the phone from ordering medical supplies, scheduling appointments, and following up with many case managers. It’s trying to find the balance of allowing my child to be a kid and play, while also trying to make sure we get all of his therapies in each day. It’s when handing your child over to the hands of surgeons becomes a normal occurrence, but it does not ever get any easier. It’s always hoping for the best, but also mentally preparing for disappointing news. It’s giving meds, breathing treatments, tube feeds, suction, repeat. It’s changing trachs and g-tubes, and a daily shot to ensure my child will adequately grow. It’s learning medical terms and medical procedures, and feeling like you should have earned a medical degree by all you have learned through your child’s diagnosis and care. Being a parent to a child with a rare disease changes you. It breaks you at your core, but gives you so much strength. This is just a small snapshot of what our life looks like. Other families who have been impacted by rare diseases may look a little different. Children with rare diseases are true warriors, and I am so proud to be the mother to my very own hero.

Sunday Snuggles

This is my first post I’m dedicating completely to Brooks. This is a little different from what I normally write. As I said in my last post, it is time for my blog to go in a little different direction. This is me being honest and transparent as I write out my thoughts. This is me being vulnerable with the world. I hope you enjoy!

Sundays are for snuggles and rest. They are for watching the big boy run and play while I savor every part of you as you are asleep. Sundays are for ignoring my to do list, ignoring the laundry, ignoring the dishes. For I know those things can wait. What won’t wait is this moment. This very moment that you are this little and want me to hold you while you sleep. You being my second born, I now know how fast time will pass by. I know too well that one day very soon you will be running after your brother and won’t want me to hold you and rock you. You being my child born into this world in a more typical fashion, I don’t want this time to end. These snuggles were missed with your brother due to various reasons, so I don’t want to miss a second of this with you. So while the world is moving on around us, I’m going to hold you a little while longer. I’m going to kiss your sweet face, smell your sweet baby smell, rub your soft baby skin, and stare at you to try to memorize your every feature. I want to remember this very moment for the rest of eternity because I know tomorrow you will be a little older, a little bigger, and just a little different. I’m going to sit here and hold you for a little while because I know you are only this little for just a little while.

New Year, New Direction

As we have entered into the new year, one of my goals has been to get back to writing. When I first decided to begin this blog, my intentions were for this to be a place that I can give updates about Rhett and share our story. Over time my writing has become more sporadic for different reasons. Things with Rhett have started to slow down medically, and with having baby #2, I have just not had the time to sit down and write. Writing in this space allows me to share our journey, but also gives me a kind of therapy where I can really get my thoughts and feelings out. So with the new year, I hope to write more often and share more about our medically complex life.

When Rhett was first born, one of my biggest questions was “why?” Why did God allow him to be born with so many anomalies? Why does our journey into parenthood have to be so difficult and different from what we imagined? Sometimes I still have those “why” questions. Why does Rhett have to go through so many surgeries and procedures? Why does he have to work so hard to accomplish things that come so naturally to most people. The list of my “why” questions could continue on forever. I really don’t have answers to any of those questions, and I probably never will. As I have entered into another year of parenthood, now with both a medically complex and typical child, I knew I wanted to start something different in the direction this blog was going. Although I don’t know the reasons as to why God has allowed Rhett to be born with so many problems, I do know there has to be a purpose to all of this. The only thing I can think of to do to help it all make more sense is to share. The good, the bad, and the ugly. The highs and the lows. The big trips, the small appointments, the daily therapies, home life, the inchstones, the milestones, the parenting two very different children with very different needs. I know I have partially been doing this already, but with the new year I plan to share even more. I want to be more transparent in hopes that others can have a little better understanding of what life looks like as a medically complex family. I want to give new parents facing a similar journey hope. I want to give those with loved ones who have similar stories patience and understanding. I want to spread awareness and advocate to the world what my child needs in order to function in a world that is not made for him. And I also want to share about Brooks who has been born into a family that is very different than most. I want to share how this medical life impacts him as well, and that all of his accomplishments are just as wonderful.

I have a few ideas of things I want to write about, so be looking out for new posts and updates. If you have questions or would like to know something specific about our life, please let me know with a comment. Most importantly, through all of my stories, I hope you will see the reflection of Jesus. I know we would not be where we are in this journey without the grace, love, and strength that God has given us.

Thanks for following along this wild ride. We love you all! 🤟🏼💙