A letter to my youngest son on his 6th birthday... My Sweet Alex aka Alexander the Great, I can hardly believe that you have made 6 trips around the sun already. What an incredible 6 years it has been! I have a few things to tell you and writing them down is always my best way to communicate. If I could tell you just one thing that I would want you to know for the rest of your life, it would be: "Be You". You know that you are loved and adored. Who you are is simply incredible. Never doubt that. Let me begin by reminding you of how you came to be. In the beginning, I was told that there was a problem with my pregnancy and that you may not make it. It was stressful, but I knew that you would be okay. I prayed that day as I laid on … [Read more...]
A Letter to My Son on his 10th Birthday – Congential Hypothyroidism
To my sweet son, William on the eve of your 10th birthday, Tomorrow, you will be 10! I've had a lot on my mind that I wanted to tell you. So, here goes... Ten years ago today, I went to Grammy & Grandpap’s house for an impromptu Bojanlges breakfast before Uncle Nick headed back to Florida. I wasn’t feeling so well, but couldn’t put my finger on why. The rest of the day was a pretty normal Saturday. That is until your Dad and I went to REI to cash in his gift cards from his birthday a few days before. I was standing there waiting for him to decide on a knife and I felt a pretty intense pain. I figured I was just tired (you were pretty heavy in my belly by then) and went to wait in the car. Later, it was determined that I was in … [Read more...]
Giving Infants Medication
You want me to give a PILL to my NEWBORN?! I remember asking my son's pediatric endocrinologist that question. As if it's not enough to have to deal with giving birth, having your newborn diagnosed with Congenital Hypothyroidism, endure repeated blood draws in those first few days, and then you are told you must get your infant to swallow a medication that (at least in the US) only comes in pill form. Our endocrinologist said to crush the medicine and give it to our son through a syringe. It was as if this was no big deal. For me, it was a big deal. The conversation had occurred over the phone. We hadn't even seen our pediatric endocrinologist in person yet. Where would we get the syringe? Oh, the pharmacy has them? Are you sure? … [Read more...]
You Are Your Child’s Best Advocate
When my oldest son was born, I remember having a conversation with my sister about how I disagreed with a decision made regarding my son's care. My sister told me: "Never be afraid to flex that mom muscle." What great advice. She was so right. Never be afraid to assert yourself. You are your child's best advocate and you know what is right for you and for your family. I tell that to people all the time. You'd think I would listen to the same advice. I usually do, but, recently, I failed to follow my own advice. 3 weeks ago, my oldest had to have blood drawn for some allergy/immunology testing. His doctor wanted me to use their recommended lab. I really didn't want to because we (of course) have a lab and phlebotomist we prefer. I … [Read more...]
My Child Has Congenital Hypothyroidism: A New Mom Confronts the Diagnosis
I am Thyroid Mom. I have been talking to parents and grandparents of children who were diagnosed with congenital hypothyroidism for several years now. Until this year, I had never met (face to face) with another mother of a child with congenital hypothyroidism. I had never met another child, another than my own, who had congenital hypothyroidism. Imagine my surprise when one day my endocrinologist said to me that she had a patient I needed to speak with. She told me that another patient of hers had just had a son diagnosed with congenital hypothyroidism and that if it was okay with me, she'd like to pass my email address along to her other patient. A few months later, I met my friend Shelley and her son, Gavin. I am pleased to share … [Read more...]
Top 5 Tips for Surviving Blood Draws
Having to deal with frequent blood draws is one of the worst parts of having a child with congenital hypothyroidism. When they are infants, it's heart breaking to watch them cry in pain as the phlebotomist squeezes droplets of blood into the little vials. Then, they become toddlers and are old enough to know what's going on, which may mean that they freak out when you pull in the parking lot of the hospital or lab. This phase lasts until they are 3 or 4 usually. As they get older, though, it does get easier as they are old enough to understand what's going on and why they need the blood test. Until then, here are my Top 5 Tips for Surviving Blood Draws. 1) Relax: No matter what the age, kids are perceptive. They can sense when you … [Read more...]
Raising Children with Congenital Hypothyroidism
WELCOME TO HOLLAND by Emily Perl Kingsley I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to … [Read more...]
Are your child’s pajamas safe?
Pajamas – have you given much thought to what pajamas your kid wears? Other than whether they are Dora or Spiderman? What about the mattress they are sleeping on? Well, you should. A few years ago, I read that the flame retardant chemicals used in everything from children’s pajamas to mattresses to infant nursing pillows have been found to be endocrine disrupters. It upset me beyond words, and worries me to this day, particularly given that everyone in my family has an endocrine disorder (Congenital Hypothyroidism, Hashitmoto's Thyroiditis, & Graves Disease). What is an endocrine disrupter? According to the Natural Resources Defense Council ("NRDC"), “an endocrine disruptor is a synthetic chemical that when … [Read more...]
Thyroid Olympics
I love watching the Olympics. My husband downloaded the Olympic app to his phone. My kids are glued to the TV. We are an Olympics loving family. We love watching sports on TV, so what could be better than watching the world's best athletes compete against each other. We also love learning more about sports that we aren't familiar with - like curling. As an aside, I sarcastically asked my boys if they wanted outfits like some of the curlers were wearing. My youngest (who loves costumes and characters and did not detect my sarcasm) jumped up and said "Yes! I'd totally wear that!". HA! He probably would. I started thinking about what Olympics our family could qualify for and compete in. Probably not much at this point (thanks to … [Read more...]
Golden Birthday – Kids with Congenital Hypothyroidism
Struggles in Raising Kids with Congenital Hypothyroidism That precious, little baby in the picture is my oldest son who has congenital hypothyroidism. He was 5 months old and in the hospital when that picture was taken. My oldest son recently had his golden birthday. Your golden birthday is when you turn the age that corresponds with the day of the month you were born. For example, if you were born on January 18th, your golden birthday would be the year you turn 18. I think your golden birthday should be a birthday that gets a little extra attention. So, we bought some gold balloons ready and ordered a cake with a big gold medal on it. Just a few things to make this birthday stand out a bit. When I think about how much he's … [Read more...]