Look what I made Archives

How they do St. Patricks Day in Whoville.

Last year on this day I was in the hospital with Lanie, who was just 2 days old. She had bad jaundice, was not pooping well, had a wonky thyroid, unsettling sugar levels, and a rough echocardiogram.

wpid-wp-1460835101529.jpgThey couldn’t find a vein to redo her IV and had to call in the NICU nurses (again) to help find a vein. I remember nurses wearing cute shamrocks and one had a small one painted on her face. I appreciated her effort but, and I don’t know why, it all made me feel so sad.

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I’ve been thinking back on that day and I realize how far she has come. How far I have come.

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#theluckyfew is darn right.

A few days ago I told the kids that I was going to make them green pancakes for breakfast on St. Patricks Day. Then I woke up this morning and remembered that Gabe has cello lessons on Friday mornings so I promised the kids that I would make the green pancakes for lunch instead and that is what I did.

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Traditionally, I try to remember to buy the kids a box of Lucky Charms for March 17th, which I did, so I topped the pancakes with some syrup and added Lucky Charms marshmallows on top to keep the old tradition going strong and the whole thing turned out to look like something you’d see in a Dr. Suess story.

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The kids thought they were terrific, especially Jesse, who couldn’t stop talking about how amazing it looked and how great the color green was going to taste.

Pancakes with Lucky Charms on top for lunch was delicious, indeed.

I should also note that I went on a run today.

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31 for 21 Day 9. Celebrate everything.

For some reason, Baby Center sends me all the emails telling me what my child should be doing at this age. Sometimes it’s reassuring because Lanie is currently learning or has already done something in the email. Most of the time, however, I’m disappointed because it reminds me how much harder Lanie is going to have to work than her typical peers to achieve even the simplest things like clapping, sitting up, figuring out how to get a toy out of reach…

Everything will be harder for her.

In this though, we’ve come to realize there is so much more to celebrate with Lanie. Things that are often overlooked milestones in typical babies, we tend to get all excited about around here and it’s like a mini party all the time and I can’t help but think there is something special about this.

Things like making a new noise, staring at something new to her, clasping her hands together, grabbing her feet…

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…making raspberries with her mouth…

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…holding her head up while on her stomach for 2 seconds, then 5 seconds, then 10 seconds…

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…turning her head towards a sound, getting herself completely turned around in her bed, and showing a lot of interest in a stuffed cow (seriously, this one got a lot of celebration from my kids for some reason)…

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And those are just some of the small things we get excited about. There are other things we’ve celebrated with her too. Things we never even thought about before Lanie was born.

After her second cataract surgery, I was so excited that she kept trying to take her eye shield off because after her first surgery two weeks earlier she didn’t have any reaction to what was happening to her.

I celebrated in conflict with myself when Lanie screamed having her blood drawn at 2 months old because a few weeks before that she just laid there and stared into space while numerous phlebotomists tried to get a vein. Her crying hurt my heart and I teared up with her but it was nothing compared to her listlessness and blank stare at her previous blood draws.  Her pediatrician looked at me and asked, Are you okay? When I said I was she smiled and said, She’s responding.

We celebrated that some of her heart issues had cleared up by a month old and that there are only 3 issues left for her cardiologist to watch, which he is confident will likely be resolved by 1 year.

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We celebrated that all of her potential digestion issues worked themselves out.  That she can eat without a tube. That she has a stomach and an esophagus and they were connected and functioning as they should.

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That she didn’t need the NICU or the OR right after birth.

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Life is going to hand Lanie so many challenges and she will no doubt have many obstacles to overcome. But we are going to be here with her and we will celebrate every single thing, no matter how small, and encouraging her to break through her perceived limitations.

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My mohawk twins, Matthew and Lanie, in deep conversation.


If you want to participate in the 10th annual 31 for 21 grab the button on my sidebar.  Big Blueberry Eyes is hosting it and you can start anytime in October so don’t worry if you’re late. You don’t have to have a child with Down syndrome to participate.  You don’t even have to know a person with Down syndrome to participate.  Really, you don’t even have to write about Down syndrome. Just write every day in October and dedicate it to 31 for 21. And grab the button and put it somewhere on your blog or your Facebook or tweet it or Instagram it or anything really. 

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No time to write much but here’s a picture of Lanie gnawing on my shoulder just like all my other babies have at this age.

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Photo credit: Marty

She has Down syndrome, yes. But she’s also a normal baby who does more typical baby things than not.

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Like today when she shared her diaper blowout with me during Gabe’s cello lesson. (No picture of this. You’re welcome.)

Good times, people.  Good times.

And before I go I’d just like to let everybody know that we are a good 300 miles inland from the Atlantic Ocean and the hurricane has not impacted us in the slightest.  However, I have family scattered up and down the east coast so please say a prayer for them and their friends as they all sort through Matthew’s damage in the days to come.


If you want to participate in the 10th annual 31 for 21 grab the button on my sidebar.  Big Blueberry Eyes is hosting it and you can start anytime in October so don’t worry if you’re late. You don’t have to have a child with Down syndrome to participate.  You don’t even have to know a person with Down syndrome to participate.  Really, you don’t even have to write about Down syndrome. Just write every day in October and dedicate it to 31 for 21. And grab the button and put it somewhere on your blog or your Facebook or tweet it or Instagram it or anything really. 

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lanie-9I’m not proud of how hard it was for me to come to terms with Lanie having Down syndrome but I think it is important for me to be as honest as possible about how it felt because, from what I’ve read, I’m not alone in how I have processed my feelings and I want other people to know this is normal. Yes, some people are able to take it all in right away and that is amazing. But some of us take a little more time and some of us need a little more patience and some of us need somebody to drag us along by our hair.

For me, I stayed in a state of pseudo-denial for a long time. I guess it’s time to fess up to my uncanny ability to put stuff in a box labeled to-deal-with-later, stick it on an imaginary shelf, and ignore it.

This, my story of denial, has nothing to do with how much I love Lanie and it has not affected how I have bonded with her. As a matter of fact, it was (is) my love for her that got me to where I am now and where I am now is a very good place. I may do another post later about why I think a Down syndrome diagnosis is so difficult for some people to accept if I can wrap my mind around how to word it. But the why isn’t what this post is about. This post is about how it felt.

We were informed that Lanie would very likely be born with Down syndrome a few days after Christmas last year when I was 25 weeks pregnant. Rabbit couldn’t be with me at that appointment and I was all alone receiving the results of the screening test. As the geneticist stumbled through delivering the results, not really sure how to explain them, I sat there and pretended like she was reading me a grocery list because I didn’t know what else to do. If I had shown any emotion I’d have had to admit that something wasn’t right and I wasn’t ready to admit my child might have Down syndrome. I’m so sad, looking back, to see that I wouldn’t be ready for that for a long time.

I think this was the reason I chose not to proceed with a diagnostic test to know for sure.
I wasn’t ready.

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Every time we had an appointment the perinatologists and my obstetrician would always remind me with long faces that Lanie had Down syndrome. I decided to ignore it. Even though her ultrasounds showed markers for Down syndrome.  Even though the screening showed high risk.  Even though in my heart I knew…
I wasn’t ready.

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After Lanie was born they labeled her a Downs baby. I reminded every doctor that she had not been diagnosed. And when they wanted to take blood to officially diagnose her I blew it off, reasoning that she’d been through so much poking and prodding already and I would wait until she was a couple of weeks old.
Because I wasn’t ready.

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At 10 days old we went in to have her blood drawn to test her thyroid and diagnose Down syndrome. After poking at her without success for what seemed like an eternity I stopped them because she was just lying there staring into space. No crying. No reaction at all. It broke my heart to pieces to watch her have zero response. And I knew. Even though they didn’t get enough blood to test for Down syndrome. I just knew.
But I still wasn’t ready.

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A few weeks later they sent in another blood draw and I was relieved when it was not enough blood again because even though the results came back as consistent with trisomy 21, I was able to brush it off because the blood sample wasn’t large enough so the results may not be accurate.
Would I ever be ready?

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It was at Lanie’s 4 month appointment that her Pediatrician told me that Lanie did have Down syndrome.  She wasn’t trying to convince me because I’d never actually outright denied it.  It was just the way she said it while picking Lanie up off the exam table and snuggling her.  Like it wasn’t this huge deal. It just was what it was and it was okay and suddenly I was ready.

I don’t know why it took me so long to admit to myself that she does have Down syndrome and to be okay talking about it with my friends and, even more importantly, my family.  It seemed like overnight I came to accept that this was a part of her and I realized that it was a part of her that I loved and had loved from the start.  Her sweet little starfish hands, her adorable sandal gapped toes, and her ears…  the cutest ears.

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Sometimes I feel like those 4 months were wasted being afraid of something that, as it would turn out, is not the least bit scary at all.  Other times I think maybe that time of denial was necessary for me because there were other things she had going on and her medical issues were far more concerning than the actual extra chromosome that was causing them.

I don’t know that I’ll ever have the answer to that but I do know this.

Lanie.
Everything she is was planned.

God created her and loved her before I ever knew of her existence. She is not an accident and not something to fear.
She is not a mistake.

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No child with Down syndrome is.

No child is.

And when I look at Lanie…

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…I feel joy.

My friend, Marty, took some of these pictures.  The one at the top and the last three are all thanks to Marty’s photography skills. Kait gets credit for the one in the hospital.


If you want to participate in the 10th annual 31 for 21 grab the button on my sidebar.  Big Blueberry Eyes is hosting it and you can start anytime in October so don’t worry if you’re late. You don’t have to have a child with Down syndrome to participate.  You don’t even have to know a person with Down syndrome to participate.  Really, you don’t even have to write about Down syndrome. Just write every day in October and dedicate it to 31 for 21. And grab the button and put it somewhere on your blog or your Facebook or tweet it or Instagram it or anything really. 

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My 3 month old wears contacts.

I don’t have many pictures of Lanie, and I only have one of myself with her and it really isn’t a good picture at all and it was taken with a smart phone in the hospital right before Lanie’s first surgery so everything was just weird.  I am unbelievably sad about this and really disappointed that I’ve missed recording so much of these first 3 months, but Kait’s camera is broken and I’m just not the photographic genius I always wanted to be.  I do take pictures, but they always turn out fair to awful.  I’m just saying this to let you know that I’m desperate so even though these pictures aren’t the best, I tried.

Lanie got her contacts last Monday and her brain is slowly learning to take all those new images and turn them into something.  I can see the daily progression in her eye control, her neck strength, and her attempts to communicate with us.  I’ve also noticed that she is beginning to associate sounds with the thing or person making those sounds.

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It is truly astonishing how necessary vision is to a child’s development. Her ophthalmologist told us that she was essentially blind before her cataracts were removed, with zero vision in her left eye and only some light and maybe some color vision in her right eye.  Nothing useful.  Then, after her surgeries, he said she could see but without focusing power everything was just a blur of shapes and colors.  So this past week everything has been brand new for her and I really love all the smiling she does now.

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It’s really crazy that my 3 month old wears contacts.  Seriously, people that learn this cannot wrap their minds around it.  It really is a gift though because her glasses, which are still being made because it takes at least two weeks to create the lenses she needs, are THISTHICK and I think it would be disappointing to not be able to see her eyes very well as they light up when she learns new things.

Her contacts are pretty thick too, but they don’t detract from her eyes at all.  If you look closely you may be able to see the contacts in this picture.

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She really does have the prettiest eyes.

Other than her eyes her health appears to be very good.  I still nurse her often but I also pump about 12 oz a day and add whole powdered goats milk to it to boost the fat and calories she’s taking in and she is finally gaining weight the way she’s supposed to. It is still a lot of work to make sure she is eating enough each day but it has definitely been worth it to see her get a little meat on her bones.  I’m hoping in a month or so I’ll be able to start weening her off the bottles and just nurse her normally.

FYI if you are ever find yourself needing to boost your baby’s caloric intake – I added formula to her milk in the beginning because that’s what her pediatrician recommended.  That turned out to be hard on her tummy and I started looking for alternative ways to boost her calories.  I came up with the idea of adding powdered goat’s milk after reading that many moms who cannot breastfeed are using goat’s milk as a base to make a better formula because it is easily digestible.  I chose powder because I wanted to boost the vitamin rich breast milk she already ate, not add more liquid.  I decided to add one scoop of it (I think it works out to be two tablespoons) to each 4 oz bottle of breast milk.  It took her a few days to get used to it but she does very well on it now.

She’s rolling over all the time now. She started rolling over from front to back at about 2 weeks, and has been rolling over from back to front from about 2 months.  She even rolls over when she’s swaddled.  It scared me to see her face down without her arms free to help her lift herself up so I’m not swaddling her anymore.

She’s doing so much better than we had hoped for and at her appointment today Dr. Mickler said he doesn’t need to look at her eyes until September. He’ll test for glaucoma then so please pray she’s one of the few who does not have that problem.

I can’t think of anymore updates to give so that’ll be it for now.

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Dad, I think Gabe stole your face.

Kait has a themed Christmas party this afternoon and while the plan was for Joe to go with her his finals tomorrow have kind of taken over his life. Gabe was happy to take his place, however, so the two booked it home from church to get made up in a somewhat 40’s fashion.

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There might be 6 years between these two but they are quite close. It’s enjoyable watching my each of my baby’s relationships with each other change as they go through new stages in life.  And even though sometimes it can pain me that my older children’s kid years are behind us, it really does seem to only get better as time goes by.
I’m living in a real life enigma, people.

Also, Gabe looks just like my dad did when he was younger so if any of you have ever wondered what my dad looked like as a teen, which is kinda weird and I don’t know why you’ve been thinking about that and maybe you should get a hobby or something, you have your answer.

Merry Christmas

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Gabe turned 15 last month.  He’s somehow become significantly taller than the rest of us at 5’10” – a full two inches taller than the next tallest person.  As of last week he wears a size 12 shoe, and his pants are now a 34″ inseam and I’m right to think this is completely ridiculous, aren’t I?  Also, he is now old enough to learn to drive. He completed all his little quizzes and classes and then passed his permit test with a perfect score yesterday. Now he is off with Rabbit driving for the first time.

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He is learning on Rabbit’s Mini Cooper, as my Mini, Watson, is off limits for this sort of thing. My poor car has been crunched twice since Rabbit bought it for me 3 years ago; once by a guy whose breaks went out, and once by a guy who backed into it, gave Rabbit bad insurance information, and was never heard from again. Mini parts aren’t super easy to come by according to our body shop here and it took more than a month to repair the front end last time. I’m not super excited about having to go through that mess again so for now only experienced drivers are permitted to drive my car.

Even though I’ve been here already twice, with Kait and with Joe, it still took me by surprise that I have a new driver and seeing him in the driver seat yanked me back to last week when he was just a little blond-headed toddler who couldn’t sit still and bit my knees out of sheer excitement.  I just don’t understand when all this change and growth is happening.  I am, however, pretty happy that he no longer runs up and bites me on the knee.

I wish it didn’t take so long to realize how short life is and how quickly it all passes by.  I wish I could somehow give my older children perspective on that – to help them understand the importance of enjoying where they are in life and appreciating the moments that they’re in. To be truly content in the here and now.

It really is a never ending lesson.

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A couple nights ago I put spaghetti on the table for my children to eat for dinner.  Rabbit and I had to run a quick errand so I charged Gabe and Matthew with dishing up the littles’ food and we headed out the door to the bank and then to Publix.

We were gone for about an hour and when we got home the kids were just finishing up dishes and evening clean-up chores.  This made me happy because it meant that I had missed the bulk of the work.  Two points for having awesome kids.

About an hour after we had returned home everybody started to notice the faint smell of roasted garlic.
Roasted garlic on burnt toast to be more exact.

Ben was the first person to realize what it was.

MOM! It’s the bread!  It’s still in the oven!

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Before I had left with Rabbit I had checked on the garlic bread in the oven.  It wasn’t even close to being finished yet so I set the timer so the children could get it out after about 10 minutes.

Only I had forgotten to mention that to them.
And they had forgotten that I was cooking garlic bread.
And somebody had just turned the timer off when it buzzed because the boys use that timer for a million things and probably thought it was for something else, like whose turn it is on the stationary bicycle, with which they are all obsessed.

So for 2 hours the garlic bread cooked itself into a hard rock-like substance.  There was no fire, no smoke, and only a hint of burnt smell. Thank goodness I had it cooking on a low temperature because once when my mother-in-law and father-in-law were cooking us dinner they set their garlic bread to burning, like on fire, when they were broiling it to give it a quick toasting on top.

We have a big family with many eager cooks so we frequently have a newbie in the kitchen trying something they’ve never tried before. Obviously mistakes are going to happen.  Things bubble over on the stove, green beans get burnt to the bottom of a pot, muffins get set on fire
But we’re not talking about a newbie here.  This was simply me being a doofus.

And now I must go because Maggie is dumping Super Puffs all over and around the stationary bike.

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This baby.

Maggie is 10 months old now.  I mentioned that she took her first steps a few days before she turned 9 months.  It took her about 3 weeks to decide that walking about better than crawling though.

She’s practically an expert walker now and she’s just so little that it seems wrong. Kait was my only other early walker and that was 9 kids ago so I never expected this.

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Yesterday we went swimming at a friend house.  It was a great Labor Day celebration with a lot of good food and a bunch of terrific friends.

After Saturday’s games in the heat, yesterday’s fun in the sun, and today being the beginning of our school year, I’m all done for.

I need a nap, people. And a margarita.

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I found one of these Huggies designer wipes cases at my local Walgreens a while back.

KIMBERLY-CLARK HUGGIES

 

I needed a travel case and even though it was a little bigger than I would have liked, I bought the blue one because it was pretty and function didn’t seem as important as design.  It’s a baby wipe container, I know.  I don’t know what’s wrong with me but it just listen up because as it turns out I bought it because I was having a great idea that I didn’t even know I was having at the time.

This one case actually holds baby wipes AND diapers when you do like I did. I love a multipurpose tool, y’all.

I took these pictures for your viewing pleasure.

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The side of the container pops off and what I did was wrap two diapers in a ziploc bag and I slid them in behind some baby wipes, then I put the cap back on the side of the container.  There was no fuss in doing this.  Everything slid in nice and easy and there is still plenty of room for another diaper or more baby wipes too. A small tube of diaper cream would even fit inside.

I find this to be super easy and the whole thing makes changing while we’re out and about more organized.  Plus, it helps keep the diaper bag less chaotic.  It might seem like a simple thing but chaos seems to rule my life sometimes. Any little bit helps.

So go forth and make your diaper bag neat and orderly.  You can send me flowers and cards and gifts of appreciation if you feel it necessary.

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