{31 for 21} Just Because.

Some old favorite Ellie photos!

Road to Recovery.

Well, we are 13 days without tonsils and hanging in there.

Lots of tears have fallen, and Ellie's cardiologist predicted correctly that this recovery would be harder on her than her open heart surgery recovery.

Crazy, right?

But her OHS recovery went really well, and now she is old enough to cry and whine with real words.

As in, if Matt gives her Tylenol or Motrin, she responds, "I'm mad at Daddy."  And if I give her Tylenol or Motrin, I hear, "I'm mad at Mommy."  Even Grandma got scolded for giving medicine.

Summer school starts tomorrow and we appreciate happy thoughts, prayers, and wishes for health not to get in the way of learning and making new friends!

We've left the house for three adventures.

1. American Girl store, where we knew Ellie was wiped out because she could hardly summon enthusiasm for a grandma who said, "I'll buy you a doll.  Pick one."  "I want Addy..."  "You have Addy."  "Oh."

2. Barnes and Noble, where she lasted for about thirty minutes before meltdown mode.

3. Glen Echo Park/Aquarium where she held crabs at the mini-aquarium and rode a carousel.  That went well for an hour but the meltdown at the end was epic.

So that's the update.  Grandma is headed home and we attempt to resume "normal" tomorrow!

Peace Out, Tonsils.

On Monday, Ellie bid farewell to her tonsils.

She was pretty hungry in the morning and began acting out a bit before Matt took her to the hospital, but overall things went quite smoothly.

The plan was for Matt to take Ellie to the hospital at eight for the ten o'clock procedure.  I would head over around eleven and a friend of ours would come to out house to watch Caroline while I was gone.

My friend came over shortly after ten, but as soon as she arrived, Matt called to say Ellie was out of surgery and that I should wait to leave until he had an idea of how she was doing.  An hour later we spoke again, Ellie had already eaten a popsicle and jello and there was no need for me to drive to the hospital.

Ellie is on round-the-clock every three hour meds, alternating between Motrin and Tylenol.  For two weeks, she is on a soft food diet.

I'm certainly no medical procedure pro, especially compared to some of my friends in the Down syndrome community.  (Hat tip to mamas Kelly, Lisa, Jen, Elizabeth, the other Megan, and so many more.)

Sister photo just for fun.

However, I know that the T&A procedure is super common among kids with Down syndrome, so here's my not-so-expert tips.

Before.  We got some social stories from friends that I failed to print but basically recited to Ellie.  We showed her pictures of herself as a baby before and after duodenal atresia surgery and reminded her that she is brave.  We told her that she wouldn't get breakfast but could have a popsicle for lunch and told her that eating and drinking would let her out of the hospital and home to play with Caroline.

Wake 'em up for meds.  It sucks.  Hearing my alarm go off every three hours at night sucks.  Waking Ellie up every three hours when she is finally freaking asleep sucks.  But staying ahead of the pain is key.  I also asked the nice pharmacist at Harris-Teeter for the syringe for 10 mL of medicine when I purchased the pain relievers.  Most kid medicines come with a small dosage cup, but at 1:00 in the morning, there is no way that's not ending up all over the sheets or Ellie's jammies.

Noseplug?  I was told by most people, "There's bad breath with a tonsillectomy."  I was told by ONE honest friend, "It's the worst thing you've ever smelled."  I'm glad one of my friends was totally truthful!

Think creatively about soft foods.  What foods does your child already like that are soft?  And what soft foods does he/she like that are not just sugar?  Because a diet of jello, applesauce, popsicles and apple juice is going to put the kid who isn't allowed to be active onto a sugar high and serious crash.  (Don't ask me how I know this.)  Peanut butter was my personal lifesaver.  We have tried French toast, canned peaches, muffins, tamales and scrambled eggs with beans and avocado.

Not a straw.  Straw is the last choice for method of drinking, which means open cup.  Exhausted child + open cup = water, apple juice, etc all over the floor.  We are using a sippy cup unless Ellie is seated at the table.  She can drink from an open cup but she needs to drink frequently, even when she's in bed.

Toys and books.  We're well into two different Finding Dory coloring books.  We're also stocked up on play-dough, shark books, and some new episodes of Shark Week.  Some of our sweet friends from church provided little quiet books for Ellie, and I also got out some Handwriting Without Tears materials to work on some good Kindergarten skills and to give us some routine.

We have until July 10 to keep her calm.

We are not long into the 14 day stretch of "no physical activity" and already fighting the "you can't go play out back and run around" battle.

Oh, and if your kid gets steroids.... I'm sorry.

EEEEK! Done with Pre-K.

Just keeping my mom feelings real here.

Ellie started school at 2.5.  I did not think I'd be emotional about the end of preschool or the start of kindergarten.

Her last day of preK is today and I may have teared up a little.

Before Ellie was born, I knew she'd get special education preschool services.  She loves school and cannot wait for Kindergarten, and I have pretty minimal fears for her.  I worry about her making friends who love her for who she is.  I worry because she'll be at a new school next year, away from "big kids" she's known most of her life through church and away from the friends who have shared her classroom for three years.

I just cannot believe how much this baby has grown up.

When Ellie started school, she had just begun to walk.  She spoke about 75 words, many of which were approximations.  She was tiny and had to find her rhythm.

Ellie is now super comfortable at school.  A friend saw her at school recently and commented to me that Ellie has grown up and carries herself with confidence.

The preK chapter is closing.

I am thankful for the start he team gave her.  Now, we're off to Kindergarten.

Buddy Walk Announcement, Sister Update, Etc.

So I'm a crummy blogger.

Forgive me.

School gets out one week from today.  Caroline eats laptop cords, which makes blogging tough.  (And she eats iPhone chargers.  We have seriously gone through like 8 since she's been mobile.  She sucks on them and they get water damage.)

Ellie has been busy with end of school year activities, learning to ride a very small balance bike, and gymnastics.  Caroline has been busy getting super mobile - pushing a walking toy, crawling at high rates of speed, and climbing.  We've been at the spray park and using our water table and sand table.

In just over a week, Ellie will have her tonsils out.

We've had my mom and my brother in town at various points recently.

My photography schedule is filling up quickly.

Life is good.  We'll celebrate Matt on Sunday for Father's Day.

We're gearing up for our Buddy Walk in October.  You can sign up or give here.

In short, life is life with two little girls.  We laugh a lot.  Ellie's sleep has not improved, although we are hopeful surgery will take care of that.  She's also getting a twin bed tomorrow!

Caroline finally started sleeping five hour stretches at night, got her two front teeth, and since then, has slept five hours exactly one time.

And that's our life.  I clearly am not updating this blog as frequently as I once was, but I'll continue to share glimpses of life with a child with Down syndrome, and continue to direct new moms to the archives!

Here are some photos, since I obviously am just updating on random bits and pieces!

Ride to playground before gymnastics. Slowly gaining confidence. Some things that are fun take ellie so long to learn and enjoy. But watching on her the playground right now, I know she'll get there with the bike. I remember her terror on slides and she just slid down one. now she's playing teeter totter.

A photo posted by Megan Landmeier (@meganlando) on Jun 16, 2016 at 12:05pm PDT

#sprayground

A photo posted by Megan Landmeier (@meganlando) on Jun 12, 2016 at 10:00am PDT

Catching Up: Baptism and Sleep.

When Ellie was a baby, I remember reading a criticism of the Down syndrome community somewhere.  It said something like "Those moms all blog about the cute little babies and their kids turn five and they stop blogging because their lives are so hard."

Um, no.

Our kids turn five and maybe we have another baby and then we blink and it's been two weeks since we blogged because we've been running around from school to sports to friends to church and we are BUSY!  Because we have school-age kids, and that's life.

So, no, my life doesn't suck, but yes, I've been neglecting my blog.  Ellie is still cute, by the way.

Two big recent events, in (semi)chronological order:

Caroline was baptized, for real this time!  You may recall that we planned Caroline's baptism for January, but instead, we got a blizzard.  Well, this time around, we made it to church, the weather was great, and Caroline slept through the service, barely opening her eyes when our Rector (that's the pastor in an Anglican church) poured water on her head.  She woke up for a small celebration at our house following the service.

Since we had people over, a couple days before the baptism I asked my dear friend/Caroline's godmother Christina to help me plant some of the planters in our backyard.  That project turned into a small renovation project, and our patio no longer features carpeting!

Both photos credit: Jessica Mellon.

We also got the results of Ellie's sleep study.  No big surprise, her ferritin is most likely still low causing restless sleep, and she has moderate apnea.  We've attempted to treat the ferritin in the past and will continue to do so, and we have an ENT added to our annual spring list of specialist visits.  

The sleep clinic wanted some updated labs from Ellie, which meant a blood draw.

She is so tough.  She watched and didn't even say "ow," just thanked the tech and asked me for a treat.  We went to meet friends for donuts because... well, when the five year old handles a blood draw better than mom, she gets a donut.  And when mom accidentally glances at the needle, she deserves a donut, too!

Sometimes I'm Surprised.

Hearing Ellie speak in sentences is normal for us.  Her articulation and syntax can be a bit off, but our girl is a chatterbox.

(I hesitate to even write that because it feels braggy and I didn't do anything special to make her verbal.  It's just Ellie.)

Despite the monologue that Ellie provides nearly 24/7, occasionally she says something that captures my attention and reminds me of how wrong my expectations were.

Yesterday afternoon, the girls and I were getting ready to go outside.  I told Ellie to put her Keens on. She asked where they were.  I told her to check the shoe bin.  The entire conversation was yelled back and forth between the kitchen and living room over a fussy baby.

Ellie walked up to me a few minutes later holding adorable little pink Chucks.  "Do these fit me, Mommy?"

I explained that I'd recently found them for Caroline with her old clothes but Caroline was still too little.

For reasons I don't understand, the conversation stood out to me later that night.  Not because of amazing content (although Ellie has good taste) but because it was an ordinary conversation, the exact type of ordinary conversation I spent my pregnancy wondering if I would even experience.

And as I had that thought last night, Ellie came and snuggled next to me on the couch.

"Hey Mommy, can you say 'FARTS!?'"

Because hey, she's five.

Vacation Wrap Up.

The beach.  The sun.  The water.

It was a good vacation.

A few final photo highlights:

Photo credit random lady on beach.

We're back to the grind today.  Ellie is at school.  Caroline has a cold and is asleep on the living room floor.  We have massive piles of clothing and kid supplies to unpack and put away and no food in the house.  But we're all a little sun kissed and salty haired.  (Don't think one or two showers can remove the amount of sand on my children.  They looked like churros.)

The next few weeks will be a return to routine with gymnastics and school and photo shoots.  But as the weather gets nicer, I hope the next few weeks will also feature some outdoor play!

Always in Naples/Photo Highlights.

We vacation about once a year in Naples, Florida.  And without exception, we meet another family who has a child with Down syndrome.  (We often plan meet ups, but I'm talking about chance meetings.)

Easter was no exception.  We happened to sit near a family of six girls and one boy, and the boy has DS.  Ellie was of course delighted.

Other highlights have included the beach, the Children's Museum of Naples, and feeding giraffes at the zoo.  We went to the museum for sensory night, so there were very few children, extra sensory friendly experiences, and and additional staff on hand.  Ellie loved it.  At the zoo, we also met the Easter Bunny and a giant chick.  Ellie was thrilled, and I was grateful.  Caroline was unfazed.

Museum fun.

Baby blues.

We wouldn't let her eat sand.  She was angry.

All Ellie wanted for her birthday was to feed the giraffes salad in Florida.

Easter service on the beach.

The Easter Bunny is holding baby Caroline!!