Tuesday, September 27, 2016

31 for 21, take 6.

Six.

This will be Ellie's sixth October.  This will be my sixth attempt at blogging for all 31 days in October, providing information about Down syndrome.

It's HARD.

It's hard because the one year old doesn't like to see computers she can't touch.  It's hard because I don't know what else to say about Down syndrome.  It's hard because I've been slacking here, as Down syndrome takes a backseat to KINDERGARTEN and FALL PHOTO SEASON and BABIES WHO KEEP FALLING AND GOING TO THE ER.

Seriously.  Caroline is one year and six days old and has been to the ER twice for falling on her head in the last five weeks.

So I'm going to attempt October.  I'll write some posts in advance.  I'll talk about our family.  If I can persuade Ellie, she'll do some writing (or dictating) of her own.

In the meantime, we have a one year old now.  And a kindergartener.


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Thursday, September 15, 2016

Amazing Friends: Shopping to Support DSANV.

You guys!  Seriously such exciting news.  The Down Syndrome Association of Northern VA Buddy Walk is October 2 and some of my amazing friends have worked toward an online fundraiser to help support people with Down syndrome.

Why is this so important?  Our association provides educational and social opportunities for kids and adults with Down syndrome.  They provide parent support.  The parent mentors get amazing training.  (Amazing.  I learned SO MUCH.)

So here's your VERY EARLY 2016 HOLIDAY GIFT GUIDE and everything you buy helps support our Down syndrome group!  Winner!

Awesome nails from Jamberry:

The Dory nail wraps are my favorite.  I like the version that has a child-sized option, but I admit my favorite features Hank.


For the NFL fans, I think these are adorable.  The team-spirit wraps would make a fun gift for an NFL loving friend, especially one who is hard to buy for!

And no big surprise, I want these.



Next up, Stella and Dot!  Looking for some fun jewelry for holiday outfits, fall photos, or gifts?  Look right here!




Little girls with pierced ears would love to get this set.

This necklace would photography beautifully and it's on sale!

And this scarf looks like a great staple for winter into spring!

Next shopping link: Books!  Usborne Books and More has such cute stuff.  I have lots of gift ideas here.

For your new reader, Phonics readers.  These have great stories and they're decodable.


For the little ones, That's Not My....  Books are endlessly entertaining.  Caroline has gotten ahold of Ellie's old books and loves these.



For anyone: Activities!



Another option?  Beauty counter!

This gift set for a new baby would make a sweet shower gift.

This pouch is great.




And finally, if you want to shop LuLaRoe, message me on Facebook via My Stubborn Little Miss and I'll add you to a group to shop Monday night!


Thanks for the over six years of support as we've walked through this Down syndrome journey!
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Tuesday, September 13, 2016

One Week In: Kindergarten

The adjustment to Kindergarten isn't easy for typical kids or kids with Down syndrome.

So far, so good.  The good?  Ellie loves school.  She loves her teacher and assistant.  She loves specials, especially Spanish.  She is happy to walk out the door each day, and our decision to decline special bus services is paying off in increased endurance.  (Her school is half a mile uphill from our house.  Mommy is also getting in shape!)

The hard?  I know less about what's going on at school because unlike past years, I don't know a ton of parents at the school.  I know just three.  Yesterday Ellie had a hard time listening.  I had to remind myself over and over, "first six weeks of school, first six weeks of school."  We also spent the weekend at our church retreat which was wonderful and exhausting, but probably didn't help Ellie's behavior.

We're doing okay.  Ellie remains a bit clingier than normal, even with her favorite babysitter.  "Mommy, you're going to tutor and then you're coming back, right???"  Caroline was a little lost the first week without her big sister around.

Five more weeks of the "adjustment period," but I think we'll be okay.  There will be bumps in the road.  But we'll be okay.




Dancing at the retreat, to the beat of her own very intense drummer!

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Thursday, September 1, 2016

KINDERGARTEN.

Dear Ellie,

You start Kindergarten in five days.  Your excitement level and anxiety level are both though the roof, although you'll only talk about the excitement.  We see the anxiety play out in ways only your parents know.  We will meet your teacher today, and I've been praying for him.  As a teacher, I can imagine that you are fun to have in class but not always easy!

You'll spend most of the school day with your typical peers.  This makes me so excited and so scared.  I want you to have good friends.  I want you to continue to love school.  As hard as your last day of preK was, I hope I again have to drag you away from friends, sad because school is over.  I'll take that over first-day tears any day.

You've done well with school so far.  You love it.  You talk about school every single day, and you have since your first day of school when you turned two and a half.  Kindergarten will be your fourth year in public school, so in some ways you have a big advantage.

I'm not worried about you being gone all day, although I think Caroline will be a little lost at first.  I'm not worried about you speaking up for yourself, other than concern you'll over-do it!  (Last night you told me you would be putting your teacher in time out.... again, praying for him!)  I'm not worried about you running off or getting lost.

I worry about you finding that quality group of friends, especially because you'll be at a different school from all your preK classmates.  I worry about you being away from your best buddy from school after three years together.  I think you'll miss him a lot.  I worry about you trying even when writing or math is hard, and I worry that you'll be overwhelmed with lots of kids and afraid to read in class or raise your hand.  

I worry a little bit about you being made fun of, but mostly I worry about you getting overlooked.

The only concern you've voiced is being away from some specific friends from preK.  I am so proud of how hard you've worked to communicate clearly, but I also know that there are things you don't have the words for or don't want to talk about.  I can tell you're worried about other things, too.  Transitions are hard for you.

But I also know YOU are ready to soar.  You walked into summer school without saying goodbye to me.  You know a few kids from summer school who will be at your school, and I hope in your class.  

Just over five years since your heart was repaired, you're starting "real" school.  My current concerns seem so little when I remember that tiny baby in a hospital bed about five years ago!  

Lately we've been fundraising for your Buddy Walk team, which benefits our local Down syndrome group.  We raised enough to get a sign with your picture on it.  The signs all say "I am ____."  I asked you what your sign you say and you confidently yelled, "I AM SO BRAVE!!!!"

You're going to do great.  I'm sure there will be bumps along the road, because there are for any kid starting kindergarten.  I love you.  I have a feeling you'll bounce into school Tuesday while your mommy sheds a little tear or two.  (And we'll see how Daddy does!)

I love you, Ellie.  Be kind.  Enjoy learning.  Have fun.  And please try to listen.

A photo posted by Megan Landmeier (@meganlando) on

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Vacation.

I promise, I'm still here!

We got back from a delightful vacation,  visiting Southern California for the first time in four years.  As soon as we got home (meaning half our luggage was still outside) Caroline managed to fall down and cut her ear, kicking off our return home with an ER visit.

And now we're getting back in the swing of the final days of summer, buying juice boxes and other lunchbox staples, and today we are meeting Ellie's teacher.  That'll be a separate post, but for now, a few vacation photos.  With Caroline running around, it's hard to keep my camera on me!














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Sunday, July 10, 2016

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!



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Thursday, June 30, 2016

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.


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