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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Friday, June 24, 2016

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.

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Monday, June 20, 2016

Nemo Goes Swimming {A Toilet Story}

A little background:

Our house was built in 1962 and I think we have had the original toilet in our hall bathroom.

Our hall bathroom is the most heavily used by visitors, and it's also the "girls' bathroom" because I don't like the stall shower in the master bathroom.

We got a new toilet in the master bathroom when we moved in, less than a year ago.

We have a third bathroom in the basement that is rarely used, unless someone is staying with us.

My brother stayed with us last week until early this morning.

And there was a full moon and a child who doesn't fully understand consequences.

Early Father's Day morning, the hall bathroom backed up.  This isn't terribly surprising but is a big pain since everyone had to use the master bath.  We scheduled a plumber for the next morning.  We knew we'd replace that toilet at some point soon, and we figured that would be the plumber's recommendation.  The four of us used the master bathroom to get ready for the day.  I put Ellie on the  potty, and when I left she was brushing her teeth.

I changed my clothes and realized she was still in our bathroom.  When I entered the bathroom, her toothbrush was nowhere to be seen.

"Ellie, where's your toothbrush?"
"I flushed it down the potty!"

I tested the toilet.  It flushed, albeit a little slowly.  We decided to see if it worked throughout the morning, and if so, we'd keep the plumber's appointment for the next day.  If not, we'd  call for a same-day appointment.

We went to church.

Later on, we made breakfast and went for a short hike.

In the mess of the broken hall bathroom, Matt had moved the girls' bath toys into the master bath, including a set of "Finding Nemo"/"Finding Dory" themed squirt toys.

Matt walked into the bathroom and from the kitchen I heard, "Ellie where is Nemo?"

I heard little feet run to Matt.

And then...


I'll let you guess the answer to that.

"Why did you flush Nemo?"
"Nemo was takin' a nap in the potty and I flushed him!"

Shocker, but the upstairs potty stopped working.  I changed the appointment to same day, canceling our plans to go out to Father's Day dinner.  We ordered pizza.

We ended up replacing only one toilet (the old one) and the plumber, while unable to retrieve Nemo, believes Nemo has now been on a journey through the pipes and out to sea.  (Oddly, I think it's been a few years since Ellie watched "Finding Nemo.")

It wasn't until a very long time out and a very long talk that Ellie really understood that "flushing random items down the toilet" is in a different category of naughty than sneaking a cookie or taking a toy from her sister.  It's a very expensive kind of naughty.

Happy Father's Day, Matt.

I hope you like your new toilet for the girls and the unclogged, fish-free toilet in our bathroom.

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Friday, June 17, 2016

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!

A photo posted by Megan Landmeier (@meganlando) on
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Friday, May 13, 2016

Input/Output: Credit where Credit is Due.

A mom friend recently shared a post that expressed some thoughts on parenting a child with a disability.  The post essentially said, "My kid will be successful because I will make it so."  (I'm paraphrasing.)  My friend said that this rubbed her the wrong way, especially on the heels of a bunch of Mother's Day posts praising those who raise children with disabilities as extra amazing.

Don't get me wrong, I think my friends who are raising kids with disabilities are amazing.  But sorry, friends, I don't think you get to determine your child's success any more than parents of typical kids determine the success of those children.

Here are some lessons I've learned parenting and making a career of work with children.  They're all my personal opinions, but many came from conversations with moms in the disability community.

Doing nothing will get you nowhere.

Okay, so let's start here.  It's a bad idea to ignore your kid, never read to him or her, and just expect them to turn out awesome.  Some kids do, but let's just agree that ignoring your kid is not a stellar plan.

Doing everything is no promise of success.

Guess what?  My kid will never be a great basketball player.  She's been the shortest kid in her class for three years.  I love her.  I think the world of her.  If I spend every day for the next five years teaching her how to play basketball, she will most likely learn the game.  But I can't make her tall.  She won't be a basketball "success" and play Varsity ball or play in college.  She's on track never to break 5' and that's just life.

By the same token, I can pour every resource into my kid but I can't determine how she will respond. Her success is not ultimately up to me, and I can't take credit.  I can try lots of different strategies but I am not ultimately going to make Ellie a "success."

In fact, I can take less credit with Ellie than Caroline.  Caroline is 7.5 months old.  At this age, Ellie had two different therapists working with her weekly.  With Caroline, my husband and I are flying solo (er, duo?).

Your definition of success might be messed up.

Ellie is five.  She can read some sight words and knows all of her letters and sounds, she is working on digraphs and blends, and her speech is beyond many kids with Down syndrome.

The first question is: "Is Ellie a success?"  I'd argue that the above paragraph has nothing to do with whether or not Ellie is successful.  Is she contributing to her community?  Is she in relationships with meaning?  Those determine her success in my eyes far better than a list of attributes.

Your definition of failure might be messed up, too.

Oh, and Ellie cannot draw much that is recognizable.  She struggles to write most letters from ideation (or even trace.)  Her 1:1 correspondence is weak at best.  I don't want to list any more of her struggles here because she will grow up one day and read this, and I want to respect her privacy.  But she has struggles.

Is Ellie a failure?  Have I failed her as a parent?

I don't think so.  I think Ellie has some specific delays that make certain things harder for her.

You see, I know some parents of kids with Down syndrome who have given their kid every possible support, and their kids get cancer, or have autism, or have something making it exceptionally hard for them to meet some random success milestone.  Let's not give ourselves too much credit.  If raising a kid with Down syndrome or another disability makes us a crew of supermoms, what does that say about our kids?

Are they too hard to raise?  Are they burdens?  Impossible to teach?

Let me let you in on a secret.  When I dropped Ellie off for respite care the other day, I said that I felt like I was getting respite for the wrong kid.  

When we make parents of kids with special needs sound like supermoms, we make the kids sound like burdens.

When we make the parents of kids with special needs sound like heroes who make or break the kids' successes, we give the parents too much credit.

Give my kid the credit.  Let me share it.  Let her amazing teacher and assistant and gymnastics coach and therapists share it.  Just like with my typical kid.  She's 7.5 months and cruising.  Guess what?  I have given her toys and tools but I didn't make her ahead in gross motor skills.

Kids are not vending machines.  What I put in doesn't always give me the output I would expect.  (See also: Sleep training failure/Apnea/Low ferritin.)

If Ellie only makes it because I'm her mom, I am doing a grave disservice to my child.  Self-advocacy matters.  Her voice matters.

And she's learning to self advocate.  If you want to test her out, point at her and ask how old she is.  If you really want to test her out, imply that she's a baby.  You'll hear an answer loud and clear.

"I am FIVE years old."

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Friday, May 6, 2016

A Medical Month.

Well, I just liked the title.  Really, it's a medical two weeks and two days which includes both April and May.

As I mentioned in my last post, Ellie had a blood draw as a follow up to her sleep study.

Since then, Ellie started a new medication and resumed Flonase in a higher dose to help combat apnea.

Minor problem: She had an adverse reaction to the antihistamine.

Translation:  She wasn't like our daughter anymore.  She was hitting and angry and it was scary for everyone.  We pulled her off the medication and her medical team has advised against antihistamines for the foreseeable future.

I called the Nurse Practitioner at the sleep clinic, and left a message with the receptionist.  "I think this is having a bad impact on my daughter.  She's hitting her friends."  Ellie interrupted, "NO, I'm PUSHING them!!!"

Ellie acts out normally, like any other five year old.  Or, maybe not like other five year olds in the way she acts out, because developmentally she's a bit different than other five year olds.  But she engages is standard "naughty" behaviors, like saying inappropriate words (her favorite is "POOP!") or using her knee to knock Caroline down if Caroline touches her stuff.  ("I did NOT push Caroline!  I promise!")  But mean isn't a word I typically would use to describe Ellie.  The medication however, made her aggressive and impulsive, a combination that was horrible.  After a couple rough days at school and an evening spent in tears as I ran around the house following my little tornado and attempting to keep her sister safe, we determined the culprit.  That was three days ago and this morning Ellie was a bright ray of sunshine again... a sleepless one, but at least a nice one.  (Until Caroline tried to take her chair, but we can deal with that.)

And just to keep things exciting... with a doctor's visit yesterday and three more next week, medication changes are the rule of the day.  After three years, we are attempting to wean Ellie from reflux medication.  Let's see what the ENT, ophthalmology, and cardiology have to say.  Hopefully, the most we will get from them is the go-ahead for a tonsillectomy, an updated glasses prescription, and a "see ya in a year."

Normally, Ellie's medical stuff is no biggie.  A few extra annual appointments make me feel scattered each Spring, but that's been it.  Daily medication for reflux to remember on vacations, but pretty minor issues.  With the annual appointments coinciding with the sleep study follow ups, this season has been harder than most for me.  (The lack of sleep for the last seven months/five years might have something to do with it too.)  I remember celebrating at the end of 2013 that it was Ellie's first "surgery free" year.  That milestone was big.

Ellie is tough as nails, but she's getting sick of doctors and I can't blame her.  Instead, I'll keep holding her hand and try to provide opportunities for fun in the midst of the unending appointments.

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