Thursday, January 30, 2014

The Daddy

I often talk about the Husband, but he is also the Daddy.  And he is an awesome daddy.  He is involved and present and often more fun than I am.  He lets me sleep in on the weekends because he knows I need a break and some extra zzzz's, but also because he relishes the chance to spend some one-on-two time with the girls.  He is a sucker for their affection and he will go out of his way to do something special for or with them.

A few months ago, Lila started waking up early and crawling into bed with us.  We couldn't figure out why all of a sudden she was waking up so early.  We tried a few things to coax a few extra hours of sleep from her, but the only thing that worked was letting her come into our bed for those morning hours.  The Daddy didn't seem to mind.

Then one morning, the Husband left for work early and I woke up to Lila crying, "Daddy left!  He didn't say goodbye! He didn't give me breakfast!  I didn't get to hug him!"  I explained he had gone to work and that he didn't want to wake her up which is why he didn't say goodbye.  After much crying we decided to call him so she could say goodbye.

I listened to the her end of the conversation:
"You didn't give me breakfast."
"But you didn't hug me."
"But I miss you."
"I want you to come home."
"Okay."
"Okay."
"Okay."
"Okay."
"Bye."

Then she turned to me and grinned, "He's coming home."

I called him, "You're coming home?"
"Yeah.  She misses me."
"Aren't you at work?"
"Almost."
"Honey, you don't have to come home."
"I know.  I want to.  She misses me."

And then about 20 minutes later he walked in the door, gave Lila a hug and kiss, made her breakfast (she wouldn't let me - she wanted him to make it) and kissed her goodbye only to drive 25 minutes back to work.  I'd like to say she understood the depth of that gesture, but I doubt she did.  After all, it's her Daddy - she's come to expect that kind of devotion!*

After some discussion with Lila, I realized that her early morning wake-ups were at least in part because she was trying to squeeze in some extra Daddy-time.  So on days that he leaves for work before she's up, the Husband started setting up Lila's breakfast and a show for her to watch when she wakes up.  This little habit has made such a difference.  It's like his daily love letter to her - a message left for her by her Daddy.  She literally wakes up and says, "I wonder if Daddy gave me breakfast?  He did!"


This morning as I was sitting at a stoplight on the way to preschool, the Husband texted:

Then he texted, "Maybe I should pick her up from school."

And then he proceeded to plan his day around taking a late lunch so he could pick Lila up from preschool.  THAT is the kind of Daddy he is.  You should have seen the delight on Lila's face when he brought her home.  "Mommy!  Daddy picked me up from preschool!" (I love how she tells me this stuff as if I wasn't in on the plans in the first place.)

Sometimes I wonder what my life would be like if I had married someone else.  I'm never more glad I married Mr. Kautzi than when I think about the kind of Daddy I gave my kids when I said "yes" to being his wife.  I love you, Husband!

*I will say that she was a little bent out of shape that he wouldn't come home from work on a whim every day.  That took more than a few discussions to get her to a place of acceptance that sometimes love looks like keeping your job so you can feed your children even if you would much rather be home.

Friday, January 17, 2014

Why babble when you can shriek?

I had hoped that when Faith had her surgery, she would experience a sudden and rapid development of her language and communication skills.  Being able to hear would surely advance things along in a way that not being able to hear had certainly slowed them, right?

Faith says, "WHAT happened to my hair??"
I was right to hope that.  She has experienced a sudden and rapid growth in her language and communication.  I guess I just should have been more specific in my hoping.  Because when I think good and hard about it, I realize that when I hoped for "language development" and "communication skills,"  what I was actually hoping for was some ma-ma-ma-mas - to add to her well-versed repertoire of da-da-da-da and ba-ba-ba-ba - and perhaps some simple signs for "more" and "all done" and "Mommy" in place of inarticulate yelling.

She's definitely more vocal post-surgery.  It's just that the vocalizations that emerged are a varied and animated set of screeches and shrieks, often coupled with banging and flapping.  The yell she's particularly fond of can be roughly translated to "FEED ME MORE NOW!"  It's kind of an "eh-eh-eh-eh" except more like "EH-EH-EH-EH!" with her whole face contorting - eyes squinting, cheeks tightening and pulling back into a dissatisfied grin.

I was really hoping for some ma-ma's, but she's still just been perfecting her ba-ba's - which she performs willingly - chin jutted out, cheeks puffed and bobbing up and down like two round water balloons on a string.

And of course, there's the raspberry-blowing which has lost nearly all of its charm - particularly because she chooses to employ it most often with a mouthful of dinner.  "NO, Faith," I say sternly and she laughs at me.

"Say 'Mommy,'" I say while signing my thumb on my chin, "Mom-my."

"Ba-ba-ba-ba."

"Say 'bye-bye!'" I say, flapping my arms like an idiot.

Blank stare.

"Say 'more, please,'" I tap my pinched fingers together and rub my hand over my chest, signing more and please.

"Pfffffffffftttt," Faith spits.

"NO, Faith," I shake my head and keep my voice low and stern.

"Ha." Faith says, her shoulders shrugging as she says it as though she's subconsciously communicating her complete ambivalence to my preference to not be spit upon.

Then she she voices her distaste for the unnecessary pause in her dinner for a language lesson with a series of loud "EH-EH-EH-EH-EH-EH!!!" and punctuated banging on her tray.  She persists until I put food in her mouth and then, as an afterthought, looks directly at me and shouts one more "EH!" for good measure.

Now, lest you think I am having unrealistic expectations of her, having Down syndrome and all, let me be clear that she is smart.  She knows exactly what I am saying - I can tell because she grins at me when I guess correctly or continues to yell if I don't.  And I know soon enough she'll figure out how to say what she wants rather than relying on me making educated guesses based on her animated gestures and grunts and yells.  So please don't misinterpret my annoyance at this in-between stage as annoyance with her.  In many ways, parenting a child with special needs is just like parenting a neuro-typical child - there are stages that you just can't wait to be past and others you want to freeze in time to enjoy forever.  Forgive me, but I'm ready to be past the stage in which I get sprayed in the face with pureed veggies on a daily basis.

The good news is we have added speech and occupational therapy to our weekly therapies so we will be working intentionally and specifically on these skills.  In the meantime, I plan to continue to relentlessly sign "Mommy" to her because it WILL be her first word, mark my words.

And...as I write she is waving bye-bye to...the kitchen cabinets?  Well, it's progress.

Tuesday, January 14, 2014

Lila's Preschool Christmas Program

Lila's Christmas program for her preschool was the week before Christmas.  It had the usual cast of characters that these sorts of things have:

From left to right: Funky Mama (music teacher), Kid who is about to cry, Nicholas - Lila's boyfriend, Lila, Naughty Angel, Mary, Kid whose costume (a star) hilariously impairs his ability to move

The music teacher is also a local children's musician, Funky Mama.  Lila ADORES her.  She put together a darling and perfectly imperfect program for our kids.  The kids were painfully cute.  There was crying, there was jumping, there was obsessive and continuous waving, there was pushing and forgetting of lines.  It was perfect.  

When my sister and I were little, my dad had a habit of finding the kid who was picking his nose or messing with his neighbor and zeroing in on that kid with his video camera during our school programs.  Thus, our home videos often have just a few minutes of us performing and several minutes of some random kid we didn't know being naughty.  The naughty kid is my favorite.  This program had a naughty angel who kept turning around and whacking other kids with her wings.  She danced at the wrong times and sang loudly when it wasn't her turn, but she was loving every minute of it.

Here they are in action:

Lila, of course, thrived with an audience.  She loves being the center of attention.  She did not inherit that trait from her introverted parents.  Aunt Jess?  Nanny?  I think those are your genes at work!

The best part was sitting next to my grandma who, with her dear friend, started the preschool program 48 years ago.  It was so fun to be with her as she enjoyed the legacy she helped create.  She was literally on the edge of her seat.


We love everything about Lila's preschool and are so grateful to have a loving environment with teachers who are so good at what they do and who pray for and love our kids.  Next year, we will come prepared with our phones backed up and cleared of unnecessary date so we can record more of the cuteness!

Monday, January 13, 2014

10 funny things

I have all these random stories and pictures that aren't enough to make their own post, so I guess that means it's time for a post of numbered randomness.  Enjoy!

1. I try to keep a pad of paper and a pen in my purse so that we have something to pass the time at restaurants, doctor's offices, etc.  We were waiting on our food a few weeks ago and Lila was practicing her lower case letters.  Then she wanted me to draw a picture of her, but halfway through she decided she wanted to draw the legs.  This was the result:

 2. "Mommy!  Guess how many undies I'm wearing!"

3. The cold weather is not Faith's favorite.  She gasps in shock when we go outside and she catches her first breath of the frigid air.  I have taken to putting her in a onesie and tights underneath her clothes so that she has an extra layer of warmth.  Add in her puffy coat and the hat someone made us and I can barely handle the cuteness.
 4. Faith fell asleep in the car and when I went to get her out she had disappeared.
 Don't worry.  She could still breathe.
5. Lila has taken to sneaking into our bed in the middle of the night.  It's become a real problem.  Part of the problem is that she has figured out that the Husband is a heavy enough sleeper that he will lift her into bed and then have no recollection of doing so in the morning.  The other part of the problem is that the Husband doesn't seem to mind it as much as he should.  I'll never understand snuggly people.

6. Lila came running out of the bathroom the other day announcing proudly that she "went potty like a boy!"  The Husband began to congratulate her and then caught himself when her words sunk in, "Good joooo…wait.  What do you mean by that?"
She meant that she had lifted the lid and sat on the gross part of the potty.  Somewhere she had gathered that boys lift the lid to go pee, but hadn't put it together that they also stand up.  I took advantage of the teachable moment and took the opportunity to do a little age-appropriate education.  I sat her on my lap and drew her some illustrations.  
"Okay.  Everyone has a bottom and that's what we poop out of."
"Yeah," she agreed with a giggle.
"Well, boys have _____ and girls have ______."  (I'll let you fill in the blanks for the sake of protecting the blog from unsavory searches.)
I went on to explain why boys stand to pee and why girls sit.  Then asked her if she had any questions.  
"Yeah, I have a question."
I looked at the Husband and I think he was thinking the same thing I was.  Oh boy.  Here we go.
"Okay, what's your question?"
"Can I draw that, too?"
Really I think she was more excited to have the excuse to draw a potty than anything else.

7.  Lila had a little tea party with some distinguished guests.  She set this whole scene up by herself.  I love her imagination these days!

8. Look what I found on one of the sweet potatoes I bought!  I mean, it's no Potato Chip Mary, but it's something, right?

9.  Lila put on her Ariel wig the other day and Faith was less than thrilled.


10. I found this card on Urban Outfitter's website.  I think I need to give it to the Husband at least once a week because that is how often he is the recipient of some hunger-induced snippiness.  After nearly 8 years of marriage, he has learned how to not take it personally.  My friend Hannah calls it "hangry" - hungry+angry which I think is the perfect word for those of us who forget our manners when our tummies are rumbling.

Friday, January 10, 2014

Lila's 4th Birthday

I wrote about Lila's birthday party here, but for her actual birthday we spent a fun day together as family.  We have a few fun birthday traditions for her birthday that we were able to mostly adhere to this year.  (Here are the previous two birthdays: 2, 3)

The Husband took the day off and we started the day heading to our favorite donut place for the traditional Birthday Donuts.  Only wah-wah, we forgot that John's Spaceage is closed on Mondays.  So we tried another donut place.  Closed.  Evidently Monday is the Sabbath of the donut industry.  We finally tried a place near the Husband's work and we were thrilled to discover that a) they were open and b) they had the ever-important chocolate glazed donut (I mean, is there any other kind of donut??)
Faith had a poop explosion on the way over and the Husband was tasked with clean-up when there was not a changing table in the bathroom.  Apparently it was an impressive and antibiotic-fueled display of excrement because it took the poor man 20 minutes to clean up.  Unbeknownst to us, the poop had seeped from her diaper and down into her tights so when the Husband pulled her tights off, poop went flying everywhere.  Fortunately (or unfortunately? I'm not really sure) he was changing her in the back of our car so the poop flew onto the parking lot pavement rather than, say, a bathroom wall. (By the way, we had so many explosions during that 10 day antibiotic run that I finally developed a system that worked.  I discovered that if I put her in a disposable diaper with a cloth shell snapped around it, the cloth shell kept the poop contained, but then I could just easily toss the soiled diaper.  So if you find yourself in a similar situation, give it a try!)

Luckily, we had a back-up outfit so we didn't have to go home in between donuts and our next birthday tradition: visiting Santa!  We talked about the other years when Lila was terrified of Santa:
Lila was determined to sit on his lap all by herself this year.  She said, "I'm four now, so I'm not scared and I'm gonna help Faith not be scared."  
This is Lila telling Santa that it was her birthday.
Faith just stared at Santa.  She employs the theory that it's best to keep an eye on suspicious characters.  If she's unsure about you she'll stare you down.
You can tell by the unnatural smile and insecure hand placement that it was mind over matter for the big girl.  It helped that Santa gave her a candy cane - she warms to people who offer her candy.  We're gonna have to drill the Stranger Danger warnings into her hard as she gets older.  Faith…stared some more and there was a disappointing lack of outright terror.  I kind of love the freaked out first picture with Santa.

Bass Pro is our favorite place to visit Santa because it's free (!) and they always have a bunch of other activities to keep you occupied while you wait.  We rode the carousel and this is video that the Husband took makes me laugh till I cry.  Check it out around 7 seconds:



Bahahahaha!  That Lila-girl.  She is such a ham.

We went to lunch at Fritz's - another birthday tradition - or as Lila calls it The Train Restaurant.  I forgot to take pictures, but it was pretty uneventful.  We ate and then we gave Lila her one birthday present from us: a play set of the characters from Frozen and told her that the other present was going to see the movie in the theater!  The Husband's mom watched Faith while we took our big girl to see her first Disney movie in the theater.  She was so excited!

There was a preview before the movie that was a little intense so I asked Lila if she was scared.  "No, I'm four so I can handle it."
The movie was AWESOME.  I immediately wanted to see it again and Lila has been singing the songs non-stop.

It was a fun, fun birthday and I was glad to do some fun things together to make our girl feel special, but keep it low-key since December is so full of activity and presents!  I think I will forever be trying to find the balance between making Lila feel special and loved on her birthday and keeping her from getting spoiled rotten and turning into a bratty kid who expects a present every day for the month of December!

Happy Birthday, my big Four Year Old!  We love you!

Faith's surgery

I hope you have assumed by now that Faith's surgery went really well.  We have already seen a huge difference in the amount of congestion and in her responsiveness to sound and words.  She has started babbling more and just generally seems healthier since her surgery.  

We had to be at the hospital at 6:00am the day of surgery so our day started at 4:30am to give us enough time to get things packed up and make it to the hospital on time.  This mama was not a happy camper.  I am the opposite of a morning person.

Faith was groggy, but happy.  For all she knew we were going on an exciting adventure that did not involve needles and drugs and people poking her everywhere.
It's a little sobering to be sitting in the waiting room at a children's hospital.  It's also pretty humbling because it gives you perspective on the challenges your kids face (and how small they are in comparison to the things other families are facing).

We didn't have to wait long.  They brought us to the pre-op room and put Faith in a gown that was huge on her.  How can someone look so cute in a hospital gown, I ask you?
I was really hard to keep her entertained so that she would sit still long enough to get her vitals.  But nothing solves that problem like a good ole piece of paper to wrinkle, rip and ingest.

That and wearing Mommy's hat.
Things were going swimmingly until the nurse took a listen to Faith's lungs and didn't like how congested they sounded.  When the anesthesiologist took a listen, he didn't like it either.  They asked us if we were sure we wanted to do the MRI since it was the MRI that required her to be under anesthesia for longer. They were concerned that her congestion might make it necessary to put in a breathing tube which could put her at risk of infection or other complications.  Up until this point, they told us we would be home within three or four hours, but now the anesthesiologist was telling us that she may have to stay overnight if things didn't go well.  In fact, he said there was a 50% chance that she would have to stay overnight.

I started to second guess our plans.  Did she really need the MRI at all?  Was I pushing for something that wasn't necessary?  Should we wait?  Should we do it at all?

Our choices were to go ahead and do the surgery but reschedule the MRI for another day, or to continue with our original plan and do both at once.  The whole reason we were doing both at once in the first place was that we were trying to minimize the amount of times she has to be put under anesthesia, so I wasn't a fan of doing them separately.  But I also wasn't thrilled with being put on the spot to make a choice that would potentially put my daughter at risk.  It's times like these that I am so aware that I am not her only mother.  I wonder what her First Mama would do in my shoes - if she would make the same choices.  I find myself thinking of the worst case scenario and imagining what it would be like to tell her that something happened to her daughter because of a decision that I made.  Add all this to the fact that it was 6:00am and I do not function well at that hour.  Have I mentioned I'm not a morning person?

Despite the concerns, our gut was telling us to continue with our plan - after all, she ALWAYS sounded that congested.  The surgeon helped us make our choice by asking if she could have a better day.  Meaning, if we came back on another day would she be healthier than she was at the time?  The answer was "yes," but that those days were few and far between.  In the end, the odds of being able to coordinate a "better" day with a scheduled MRI seemed slim so we decided to go ahead and do the MRI and the surgery.  I tearfully asked the group of nurses, anesthesiologists and surgeons if I was making the right choice, worried I was being too risky.  They said if they thought it was unsafe they would not allow us to proceed, but that they simply wanted us to know that there were more risks involved that we had anticipated.

I think they could tell that I was feeling insecure about our decision because four different people came out to update us throughout the procedure.  The anesthesiologist even made a special visit to tell us she did well - he said he usually just lets the nurse give parents the update.  I played the role of Nervous Mommy well, I guess!  They were very kind and we are grateful for how well we were treated.

I was also grateful for my friends who are nurses who assured me that we made the right choice - two of whom also have kiddos who have special needs and who have had much more intense surgeries than Faith had.  It put my heart at ease to hear their expert opinions that we had made the right decision.

My prayer was that she would do better than expected and each person who came to update us said those words exactly: "She did better than we expected!" I was so grateful for such a clear and obvious answer to my prayers.  What a kind and generous God we have!

Again, we were humbled by the number of families waiting with us for news that their kids were out of surgery.  I overheard one nurse give a family an update that they had about six more hours of surgery to go, and I was grateful once again to be reminded to put our situation in perspective.  Surgery for a little baby is a big deal, but there are many worse situations we could have been facing.

The Husband read a book while I watched a movie to keep my brain distracted while we waited.  (Baby Mama - I may have laughed out loud at the part when Tina Fey apologizes for overreacting and Amy Poehler mumbles under her breath, "I'm sorry I farted into your purse." I may be laughing right now remembering it.  Maybe.)

Soon enough they were calling our names to meet her in the hallway before going to the post-op room.  She grinned when she spotted me and I held her hand the whole way up to the new room.  I was desperate to get my hands on her again, and I was super relieved when they said I could hold her.  They wanted to monitor her for an hour or so to make sure she handled the anesthesia okay.  She was a little out of it at first, but soon enough she was restlessly trying to climb up me and get down on the floor and eat inedible objects and I knew I had my girl back.

The recovery was amazingly quick and she has done so well since the surgery.  The MRI came back negative - the enlarged ventricle is no longer enlarged! - and she passed the ABR hearing test with her new pipes.  The MRI did reveal a sinus infection (which, I believe, is THE most expensive way to diagnose a sinus infection - only the best for our girl!) so we got her on some antibiotics and that combined with the tubes has cleared up her constant congestion miraculously.

She is a new baby!  This might sound weird, but I am obsessed with her upper lip now!  For so long it was covered in dried snot (or just regular old snot) and I never really got a chance to see it, but now it's bare and soft and clean and has a delicious lack of snot on it!  It's clear she is feeling much better and she is definitely talking more and is more responsible to sounds and language.

So the surgery was a success.  I am grateful that everything went well.  They tell us she will likely need her tubes replaced in 6 months, but I'm hoping that once again she'll do "better than expected" and we can spread out the surgeries a bit more.  We were encouraged that the tubes seemed to resolve nearly all of the hearing loss she had experienced which means that there most likely isn't a separate problem causing hearing difficulty.  Time will tell, but for now we are happy to have come out of this latest adventure unscathed!

Thanks for praying for our girl and for following our adventures - big and small!

P.S. If you were wondering where our big kid was during all of this, she got to spend the night at Nanny and Pop's house and was ecstatic to FaceTime us in the morning to tell us that she was eating breakfast before preschool!  We were discharged from the hospital just in time to pick her up from preschool and Miss Independent did great.  No surprise there!

Wednesday, January 1, 2014

Lila's 4th Birthday party

As usual, I am behind with blogging about all of our December adventures.  I've got a post about Faith's surgery, Lila's birthday and Christmas coming.  I'll start today with a post about Lila's party which we had at the beginning of the month.  We like having it early so that there's some time in between before the Christmas craziness hits.  Plus we had Faith's surgery in the mix so it was an extra busy December!

We had a dress-up birthday party for Lila and it was so, so fun!  We kept it smallish and the girls that came were so sweet and cute and they played so well.  It was like a birthday party miracle!  There were no spats or toy-stealing incidents or anything!  I asked my friend's little girls, Sophie and Stella (two former students of mine), to come and help me with Faith and the little craft we did and they did such a great job.  They are in 2nd and 4th grade and their little brother is Lila's betrothed, Jude.  They are so sweet to Lila and they love Faith which warms my mommy heart!  I wish I had taken a picture of them!
Because Faith's surgery was a few days later, I wanted to keep things simple so I planned a little craft, ordered cupcakes from a local cupcake shop, and pizza from one of our favorite pizza places.  The kids played dress-up with our myriad of dress up clothes and I called them aside one at a time to make the princess wands which Stella and Sophie helped me with.  Then we had pizza, cupcakes, opened presents and they played some more.  Everything went so smoothly and Lila had a blast.

I took a few pictures to document the day.  We moved Lila's bed into Faith's room so that her room could be the play area.  We set up the stage that the Husband built for her last year and the girls had a blast!


 Here's a picture I took before the chaos came:

Her room is finally in a place that I'm really happy with.  It took awhile to find the right use of space for everything as we transitioned her to a big girl room.  I should do a room tour one of these days.  Her room is full of special finds and things we've put some love into.


Anyway, back to the birthday party...
I made that birthday banner for her first birthday and just break it out every year.  I think I'll make a new one next year because it's kind of falling apart.  It's scrapbook paper and music pages from an old hymnal.  When I pulled out that table cloth, Lila gasped like it was the most beautiful thing she'd ever seen.  My girl loves pink!  My mother-in-law gave it to me.  It's too small to really fit our table, but it's a fun accent fabric for something like this.

Since Lila's birthday is so close to Christmas, I use that little white Christmas tree as decoration each year.  This year I adorned it with some glittery necklaces that the little girls got to take home as party favors.

I borrowed my mom's little table and chairs and pushed them together with ours to make a longer little table for the girls.  I used paper from our Ikea roll of paper to spread across the tables like a table cloth and wrote Happy Birthday Lila in pink sharpie.
Lila wanted it to be fancy so I put out the place markers with each girl's name on them.
I had a nail-painting station set up and the craft supplies.  We made little princess wands with wooden rods, ribbon, washi tape and sparkly foam stars and crowns.  They turned out so cute and were a hit!  The girls got to pick their wand topper and the color of ribbon they wanted.  Sophie and Stella were so helpful with this!  I'm so glad I asked them to come help!

I could not believe how quietly the girls sat while Lila opened her gifts.  Lila was so hilarious - she wanted to read and examine every card before she got to the gift.  I guess she wanted to savor the moment!

You can see the wand the girls made in the picture below.  That's sweet Ruby-girl looking at the camera.  We miss our weekly Ruby-sitting so much!
Afterwards, the girls went back into Lila's room to play with the gifts.  The disembodied head with the play hair dryer and curling iron from our little neighbor was the favorite gift.  As you can tell from my description, the head creeped me out, but the hair dryer and other accessories were cute!
 Lila's favorite gift was the Belle dress that her friend Jaslen gave her.  She couldn't wait to try it on!


It was such a fun party and the best part was that it took very little planning and effort.  My girl had a great time and all the little ladies played so well together.