Yo soy La Lay

adventures in family, faith, and Down syndrome

Lesson #29: No passing up snuggles

This is part of the 31 for 21 Blog Challenge!

How did we arrive at Day 29 of this challenge already?! Unbelievable. This has probably been one of our busiest months yet. And here we are at Day 29. You are going to have to forgive my short post tonight. I have no excuse except for this:

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These days, when we’re running like crazy and the girls are stretching their independent streaks, I cannot pass up snuggles.

At 6:15, Ellie snuck up into my lap with FOUR books. How can you resist a little lady peeking up through mile-long eyelashes, begging you to read “just one more, please?”

After Ellie went down, the other munchkin was ready for her chance at some lap time. Once I wrestled her meds into her (eye drops in this squirmy worm… Yeah right. Anyone who says people with Down syndrome don’t get angry should watch this fabulous spectacle), she settled in for a snooze.

I do not make a habit of holding my children while they fall asleep. It’s not how we roll. But, on rare occasion, it is kind of lovely.

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Nine Months

Well, the car seat carrier is getting heavy.  I’m not sure how much longer I will be able to cart my sack of potatoes around in it without enrolling in a gym to build up some muscles.  One of my most favorite things about Tessa is the fact that she literally melts into your shoulder when you hold her.  It’s a product of her low muscle tone (meaning: it takes her more energy to get the muscles going than is typical) and I adore it.  However, when it comes to her being carried in a car seat or otherwise, she gets heavy fast.  With little to no assistance from her own muscles, mine are tired.

I bring this up only because we had a nine-month visit with Tessa’s pediatrician today and she is tipping the scales 😉 at almost 17 pounds and 26 inches these days.  She’s essentially not on the growth charts for height or head circumference, though not surprisingly, her weight was on the percentile charts.  On the old, no-longer-in-use Down syndrome growth charts, she’s at a solid 50th percentile in all areas and continues to grow.  And, as John so correctly noted, she’s in the 100th percentile for cuteness.  For comparison’s sake, she’s about the size that Ellie was at 5 months.

(Yes, I did run home and check Ellie’s baby book for that comparison.  But, for the record, I was only trying to determine how much longer I might be able to keep Tessa in the six month clothes, based on what Ellie was wearing.  I think we’ll get through the fall and maybe part of the winter…. yippee!)

With good reports from cardiology, her ENT, and her eye doctor, we are thankful to have a little break from appointments until the end of the year.  We don’t have to go back to cardiology until she is about 2 and a half.  They are still monitoring the very, very small hole that Tessa has between the top two chambers of her heart.  It is causing no issues and we fully expect that the hole will close on its own in the next couple of years.  If not, she may have surgery at around 3-5 years of age.  No ear infections recently, tubes are still in, eyesight is normal, clogged tear duct resolved months ago… we’re in good shape!  For once, when the doctor asked for any changes to her medical history, I had nothing to add!!  Tessa did get her flu shot today as well and took it like a total champ.  She puffed out her lower lip a bit, but there was no horrific, blood-curdling scream as her sister tends to do.  We had originally thought that Tessa might be our drama queen, but I have to tell ya, she is not showing any signs of being dramatic at this time.  Let’s keep it going.

I’ve been oddly reflective over the past couple of weeks, but am saving my posts up for the 31 for 21 Blog Challenge that I will take part in during the month of October (which happens to be Down Syndrome Awareness Month).  More details coming soon…. And since my crazy schedule is keeping me from taking a tremendous number of pictures these days, I leave you only with Tessa’s new sleeping position… and solid evidence as to why I pick out the girls’ clothes every day (not John):

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At least they are just pajamas, but poor Tessa… 🙂photo (12)

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Belly Sleeper

I just went in to check on the girls and found Tessa asleep on her belly.

We did not put her down this way.

We knew that she could roll from back to belly, but she hasn’t ventured into the world of tummy sleeping until tonight.

Sweet Jesus, how am I going to get any sleep?!

I realize that all you moms with kids around my age are chuckling at me right now. My own mother always tells me “all YOU kids slept on your bellies and here you are today!” Yeah, yeah, yeah. But modern advances in medicine have changed a LOT of our ideas about infant safety. Take car seats for example. Have you ever seen a car seat circa 1985?? Yeesh.

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It seems to me that now, medical professionals subscribe to the idea that if you put your baby flat on her tummy and do not watch her every breath, she will die. And being a mother who wants the best for my child, I believe them… which is why this whole evening is so agonizing for me.

I did the same amount of agonizing with Ellie, but still feel like Tessa is different. Because she is less interested in rolling the other way. Because her breathing is loud still. Because dang it, I’m not ready for her to make this decision for herself! Ha. Leave it to my daughter to ignore her mother and do as she pleases at the ripe old age of not-quite-four months. Karma.

Parenthood is not for the weak-hearted.

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Snorty McSnorterson

Did you know that Tessa sleeps in our bedroom closet?

Someday, Tessa will move into her crib in the room that she and Ellie will share. I think they will be *great* roomies… However, before she was born, John and I agreed that it would be best for everyone if Ellie didn’t have to endure the sleepless nights like the rest of us. So Tess started in our very small “office” (which is actually just part of our upstairs hallway). When she woke up Ellie one night and no one in the house slept (Worst. Night. Ever.), we moved her to the only place in our house that we had room: the master bathroom.

We felt kind of awkward explaining to our original EI coordinator that our brand new baby was sleeping in a bathroom. She didn’t seem to be phased by it, but we were and that very evening, we cleared out some space in our closet and she’s been there ever since.

So why doesn’t she just sleep in our room? One word (and it’s a doozy): Laryngomalacia.

Say it with me: La ring o malaysia.

If you listen to Tessa breathe in some positions (mostly laying flat on her back), she sounds like she is congested. We spent a few weeks trying to “treat” her congestion with saline drops, a humidifier, every kind of nasal aspirator available on the market… nothing worked. The speech therapist who did Tessa’s initial evaluation told us about Laryngomalacia. It is essentially loose cartilage that causes some airway obstruction when a child breathes. It’s pretty common, and it will most likely go away on its own before she turns one. So if you have the joy of spending time with our sweet girl, don’t worry, it’s not contagious, she’s just a little floppy on the inside. 🙂

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