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Our Laryngomalacia Journey

To the parent who just found out their child was diagnosed with Laryngomalacia ( LM). Don’t worry if you can barely pronounce it because it took me a few tries. In no time, you will be an expert at explaining it and pronouncing it. Always know that you don’t owe anyone an explanation as to why your child sounds noisy either. In  time, you will know so much about LM and you will literally be considered a LM Supermom.

Let this be the start to your journey. Never get upset or angry about it . Just embrace the journey and the changes as I have come to do.Lean into your faith and grow closer to your spouse.  Seek support, find new LM mom’s to connect with, and embrace the fact that you will be your child’s number one advocate. Most importantly, take care of your own health. Your child needs you.  A mother’s instincts are always the best. The best advice I can give is to stay as organized as possible. Become a sponge and have a special place you can keep all numbers, notes, and co pays. If you have a bad memory like me, notebooks and calendars are essential.  Listen to your child and don’t let the opinions of others get to you. You know your child more than any monitor or specialist too. Vocalize your concerns and fight for what you think is best.

It’s been quite the journey having my son Elijah. This whole experience  has given me a whole new outlook on life. Some days are harder than others but somewhere out there someone else is experiencing worse. It’s changed me for the better.  My son was born with an airway defect called laryngomalacia . Laryngomalacia is a congenital softening of the tissues of the larynx (voice box) above the vocal cords. This is the most common cause of noisy breathing in infancy. The laryngeal structure is malformed and floppy, causing the tissues to fall over the airway opening and partially block it. I remember it sounding way worse than it really was. Now at the age of 3, I can still hear it after he exerts himself or he is under the weather.

For most infants, laryngomalacia is not a serious condition — they have noisy breathing, but are able to eat and grow. For these infants, laryngomalacia will resolve without surgery by the time they are 18 to 20 months old. However, a small percentage of babies with laryngomalacia do struggle with breathing, eating and gaining weight. These symptoms require prompt attention.

Our first year felt like a blur to me. I remember how it felt to barely sleep after having our first child and I felt prepared  to take on having a newborn at home with a 3 year old . The constant dr visits and specialist visits felt never ending. Looking back, I realize having a baby with LM truly teaches you the meaning of lack of sleep all while cherishing every breath we take. I have learned to live in the moment and take everything one day at a time.  I remember never sleeping  because my husband and I were always so worried about choking and blue spells. He was in the NICU for 5 weeks after birth and he suffered many episodes where he lost oxygen and his heart rate would drop. I truly believe whole heartedly that this is the reason he has been delayed in some areas. He had a rough start. Every day I thank God for these two amazing and beautiful children he blessed us with.

I was fortunate enough to find the Tri County Regional Services when my son was just 1 years old. The NICU Occupational Therapist referred me to them because she felt as though my child was at a higher risk for developmental delays upon doing a follow up assessment. At the time, I remember getting super defensive and thinking how could she possibly think that if my son was only 1 years old . All kids develop on their own pace. That was the start to our therapy intervention journey. Since then, my son has received early intervention services, speech therapy, physical therapy, behavioral therapy, and occupational therapy. It sounds like a lot more than it really is. We have become so used to it and his therapist have truly been a blessing in our lives. You truly start to feel like you lose the friends you thought were your true friends, you lose your free time, and you just want to spend any free time you have alone with no one but yourself. There is no free time. There is just ” gaps ” of time . Upon my own research and the laryngomalacia community, I have found that there is an extremely high percentage of children who need speech and early intervention services. Its hard to estimate whether or not the child will need it. But its also noted that most children outgrow LM by the age of 3. Id like to say that my son has almost outgrown it except he’s super susceptible to illness and stridor.

Id like to tell you when the journey is over but I truly don’t know when. We are ending this transitional phase from Tri County to the school district services. I knew this month would be hard but not as hard as it’s been. Im a walking emotional wreck. But I feel so blessed at the same time. Here in California, the Regional Center offers these amazing services to children under the age of three. We as parents get the opportunity to have our children assessed by a phsychologist to find out whether or not any type of intellectual disability or autism is present. My son did so well during his last 6 months of services. All of his therapists reports were great. We have all seen tremendous improvement. But I was completely blindsided by the psychologists’ results. In her report , she stated that it’s essential my child continue to qualify for services through the regional center to maximize intervention services. She is not diagnosing my child with anything as he is only the age of 3 years old. But in order to provide my son with the services he needs, she suggest a diagnosis of Mild Intellectual Disability. Let me make it clear that I enjoy sharing this journey with you. Not so anyone can judge me or give me their opinion, but simply as an outlet for me. I find documenting our journey and taking care of my health essential. Its important I hold myself together and my workouts keep me sane.  I have met many  amazing mothers on this journey and don’t believe in judging other mom’s. Every child is different. Every mom is different. Every marriage is different. I share my truth and believe its the right thing I can do to keep myself healthy. There is no book on how to do this the right way. All that matters is the love we give our children. I enjoy the fact that I feel living life one day at a time is best. I cherish every moment and sometimes forget too. I don’t like to compare my first with my second child nor do I like when my anxiety kicks in because I second guess myself. Its the worst. But in my heart I know that Im the best mom I can be for these amazing children. Im doing the best I can.

The day these results were given to me caught me completely off guard. I feel as though Im trapped in a ” damned if you do and damned if you don’t situation” . I have so many questions written down for my Regional Coordinator. I have to be completely honest and just say that I don’t want to be selfish and say that my son doesn’t need additional services. I will continue to give him the services he needs through an outside facility. But then that voice in my head tells me that my insurance will quickly run out and I will benefit from both private and services from the school district and agency. I have to do whats best for my child . Having that diagnosis on paper for coverage reasons just doesn’t settle right with my heart.

My baby is such a light. He is so bright, outgoing, loving, friendly, and such a sweetheart. He loves his sister, he loves people, and he is truly a blessing. Opting out of the opportunity to continue services that have provided him amazing resources would be a selfish thing of me to do. My fears, worries, and defensiveness feel like they have been compiled into one. I have to continue to remind myself over and over that we are doing whats best for him. He will benefit from this. This might not be forever. He will outgrow this .He is bright and perfect the way he is.

What does this hold for his future? I don’t know. Will this title be carried with him when he starts elementary school? I don’t know yet. Is my child on the spectrum? I don’t think he is. Will he catch up and increase his vocabulary? Im so positive that he will. Will my child have the opportunity to be mainstreamed in regular classes ? I sure hope so. This new journey has given me a whole new outlook. I have to choose to do whats best for my child. I have to take care of myself too. I need to keep strong and focused now more than ever . I am him advocate. I will do everything in my power to make sure my baby gets what he needs. I will ensure that he is remaining challenges and he hits his goals too. I will continue to walk into this path of new uncertainty and I trust that God knows whats best for our family. I will educate myself on as much as I need to know and trust our decisions along the way.

So a new journey begins.

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4 Comments

  • Reply Lauren Jackson

    I was wondering if we could connect and communicate. I have so many questions.
    I am a mom of 2 (3 year old and 3 month old). My 3 month old was diagnosed with severe laryngomalacia at 1 month and had to have an emergency supraglottoplasty at 6 weeks because of oxygen desaturations and failure to thrive. We were in the ICU in a ventilator for several days after and have had a blur of specialists appointments since.
    Trying to find a balance of “normal” again… what is that even?
    I used to do 21 DF and shakeology, I stopped at the request of my OBGYN while pregnant. I wanted to start my shakes again, but I’m nursing and don’t know if it’s safe, especially considering all we’ve been through.
    And I read about how you’re concerned of delays with your son with LM, and I’m just curious when and how you noticed them or what signs there were?
    I feel so lost most times, and would love to speak with someone who knows what it’s like to be in my shoes.

    Thank you for sharing your story!

    November 9, 2017 at 7:34 pm
    • Reply Jaclyn

      thank you so much for sharing YOUR story with me too. I would LOVE to connect. I will email you. I love connecting with fellow LM moms too. We can totally relate.

      November 10, 2017 at 7:28 am
    • Reply Jaclyn

      Hi! We should still connect!

      August 30, 2018 at 6:42 am
  • Reply Vanessa

    Hi! My son also has laryngomalacia. I would love to share my story with you and ask a few questions. I’ve been doing a lot of research, but with your experience I’m sure you’ve learned so much along the way and I’d love to learn from you.

    August 31, 2018 at 5:56 pm
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