It’s been a hot minute since I did an update on my baby girl, Rylyn. For those that haven’t followed along on her journey, Rylyn is a spunky, sassy, old soul trapped in a tiny body, 3-year-old. She is a TRIP!
She is my odd ball though, despite all her amazing qualities. My husband likes to say that she needed just a little more time in the oven…that she just wasn’t quite done. But her quirks are part of her unending charm.
At her 2-month checkup, she hadn’t gained any weight from birth, so she was referred to a GI specialist. We were PCSing to California, so she started seeing rounds of doctors at Rady’s Children’s Hospital in San Diego. At 5 months old, we were admitted to the hospital for about 10 days to run tests to see if there was a root cause in why she wasn’t gaining weight or eating over 2 oz (literally, she stopped at 2oz every time I tried to feed her like there was a shut off switch in her mouth).
The consensus from tests that came back ‘all clear’ (and months later after additional genetic testing, endoscopies, and more doctor visits) was that she had a perfect storm of “minor” physiological conditions that, on their own, wouldn’t impede her ability to eat but, together, made it almost impossible for her. She would eat just enough to not feel hunger (2 oz) then stop because she physically couldn’t do any more.
She has an extremely high palate (it’s like a reverse canyon up there) and low muscle tone that made it impossible to latch and hard to drink from a bottle for long periods of time. She has laryngomalacia (super floppy larynx) which interrupted what is a newborn’s natural ‘suck, swallow, breathe’ rhythm when they are eating. It also makes her super noisy when she breathes, or laughs. Fun fact about this, she snores so loud that you can hear her through the vent when you’re standing in the kitchen and her room is above you…it’s kind of cute in the early morning when I’m getting my coffee. She also has a severe lactose allergy that disrupted her ability to get the nutrients she needed from my breastmilk and the formula, and we weren’t aware of it until she was 4 months old. And, aside from her pacifier, she developed an oral aversion and would allow nothing to come to her mouth at 6 months of age.
Like I said, any one of those issues would have been manageable, but all of them together added up to a little baby who couldn’t eat and when she did, she couldn’t absorb what she needed to grow.
At the end of our visit, she had a feeding tube placed and after three days of round the clock feedings, every 3 hours of a very high caloric lactose free formula, she finally started gaining some ounces. (The pictures below are when she just got her feeding tube vs 3.5 months later...a world of difference).
We began Occupational Therapy, Speech Therapy to help desensitize her mouth, and physical therapy (the entire left side of her body is weaker than the right) each week. I used to tell her that even though she was the fourth kid, she did NOT have to go to all that trouble to get me to spend time with her. I would have given her my love and attention because I loved her…but she insisted.
She had what doctors assume was a seizure type episode when she was 7 months old that landed us in the hospital overnight. She had more tests...more "normal" results.
She didn't start crawling until she was 1 1/2 years old.
We got her a walker with wheels and man, could she cruise in that thing, but she didn't start walking until right before her 2nd birthday. She would have dominated Mario Kart though.
I used to joke that everything we put into her went into teeth and hair production because she popped her first teeth at 3 months old and had a full mouth of teeth by 8 months, and the way her hair grows? We should have named her Rapunzel. (Just for reference, the picture below was taken about 3 weeks ago, and she's had about 4 haircuts since she was born, and my mom takes about 2 inches off each time).
With weekly physical therapy, occupational therapy and speech therapy, slowly but surely, she got stronger. Very slowly but surely, she grew. Very, very slowly but surely, she gained weight. Our little 7lb 10oz nugget is now 29lbs (30lbs on a good day) and full of life.
Rylyn loves (and I do mean LOVES) to laugh. She wants you to tickle her all the time and chase her around the house so she can laugh.
Her favorite books to read at bedtime are ‘Penguin Goes on Vacation,’ 'Brown Bear, Brown Bear,' and 'The Very Hungry Caterpillar.'
She is at the age where she wants to pick out her clothes and Lord help you if you say no.
She is four months older than her cousin, and though there are still major differences in what she is able to do physically compared to her, she is catching up.
Nutrigrain bars and pouches consist of 75% of her daily food intake, but we’re working on it. She’ll eat homemade chicken nuggets, hot dogs, meatloaf, eggs, veggie straws, crackers, blueberries, and grapes. She is OBSESSED with ketchup, which works for me because I can get her to at least try most things if I dip it in ketchup first. And she loooooves chocolate.
But she likes to sniff her food first…which she just started doing. If it’s something new, she’ll bring it to her nose, sniff, and either take a bite or immediately put it back on her plate and say, “I don’t like it.”
She has a fiery temper. She will yell like a banshee if you take something of hers and her siblings know her wrath all too well.
But she also loves them unconditionally.
Fire trucks are her latest obsession outside of the house. Every morning, we pass a fire station right by her daycare and when the doors are down, she says, “shhh, the fire truck is sleeping” and when the doors are open, she screams and laughs. And she's obsessed with Daddy's helicopter.
In December she was finally placed in a special needs class at the same elementary school that my other kiddos go to. She gets to ride the bus from daycare to school and back, which she loves, and is getting more services through this program, like PT, in addition to her IEP goals.
We are starting the potty-training thing and it’s going…meh…as well as it can. We’re about 50/50 there.
Next month, my baby girl will be 4. I cannot believe it has been four years since this little firecracker blessed our family. I am not going to lie, her first year of life scared the crap out of me. She was so small, so fragile.
My little warrior princess who seemed to be clinging to life for her first months, has finally blossomed to become a strong, fierce little human. I cannot wait to see where her path leads.
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