Friday, December 31, 2010

My year

January 2010.
~Rang in the New Year in the hospital recovering from my c-section. Started getting a fever, which turned into my incision site being opened back up (gross).

~Stayed at the Ronald McDonald House for 3 weeks. Three. Long. Weeks.

~ Brought my lovely baby home and reunited my family on January 26th.

~Had an ice storm that knocked out the power for a few hours overnight on the 29th.

February 2010.
~Celebrated my 30th birthday by being home with my two boys solo for the first time. Loved every minute of it.

~Took D to his pediatrician here in Lawton, who thought he looked very jaundiced still. She tested his blood and found out that it was his direct bilirubin that was high (very dangerous for the liver.)

~Got readmitted to Children's in OKC on February 13th.

~Lots of tests run, lots of blood drawn, lots of blood transfused, and Dylan was released at 10:30PM on February 19th.

March 2010.
~ D started March out with a cold and a nasty cough, which I was scared would get us put BACK into the hospital. He got over it with no problems, though, thank God.

~D got the Synagis shot, which insurance tried not to pay for. But I stabbed them with a fork and a knife. Okay, I didn't, but I did fill out friggin paperwork and they paid all but $20 of it. :)

~ Celebrated (?) our first World Down syndrome Day.

~ That dummy Jesse James cheated on Sandra Bullock! (I wouldn't have remembered that it happened in March if I weren't a bored-pants back then and BLOGGED ABOUT IT. Yeah.

~ Little M entertained me daily with his silly sayings and ever-expanding vocabulary. I guess I could pretty much put that on every month, though.

April 2010.
~Had a great Easter with my little family!

~Had some bouts with some minor depression as I realized that having a baby with special needs actually chases some of your dearest friends away. Luckily, it also brings you closer to people who used to just be acquaintences.

~D FINALLY smiled a true, reactive smile this month! Then he got blood drawn that same day. Poor sweetie!

May 2010.
~ More of the same... still realizing that some people suck at life.

~ Lots of tornadoes hit Oklahoma.

~Made a decision to stay at home (which later didn't work out).

June 2010.
~Celebrated being with my hubby for 9 years!

~Started realizing that surviving financially without me working was probably not going to happen.

~Blogged about Kim Kardashian making breastfeeding comments that didn't make me happy.

~Celebrated D's half-birthday!

July 2010.
~Had a lovely 4th of July with our beautiful family and my in-laws.

~Had some crazy shenanigans go down in my 'hood. Read here.

~Celebrated 5 years of wedded bliss on the 8th. :)

~Started noticing that the Horrible Threes were quickly taking over the Terrible Twos in the bigger boy.

~Watched a Corpse Flower bloom via webcam, which little M lovingly called the Stinky Fwower.

~Finally decided that I had to go back to work so we could live and, you know, eat and stuff.

August 2010.
~Little M got his very first haircut. He cried the entire time it was going on, and then demanded a sucker afterwards. haha

~Since I decided to go back to work, I got moved to a new school and to a new grade. I was scared and sad at the time.

~Had the first day of school from... well, you probably know.

~My precious little M turned 3 this month!

~I had to give up breastfeeding because my supply went WAY down when I started back to work. :( Breastfeeding/Pumping for 8 months was an accomplishment that I was super proud of, considering how hard it was to NOT have success the first time at all, and for D not to be a good sucker. I wish I could have made it longer.

September 2010.
~D's OT moved away, so he got a new one. We like them both.

~Found out my Papaw had cancer. He decided that he didn't want treatment and that he didn't want to die in a hospital, so my mom and her brothers took care of him at home.

~Papaw passed away September 30th.

October 2010.
~My sweet IRL friend Stacey's brother (and my darling jr. high English teacher's son)'s wife had a baby with HLHS. Here is Emma Janae's blog.

~The boys had an awesome time Trick-or-Treating this year! Dylan was the Tin Man, and little M was Super Why.

November 2010.
~Took D to an opthamologist, who said his eyes and optic nerves were great!

~Took both boys to the pediatrician, who said D was fat and little M needed speech therapy.

~Took little M to a speech pathologist (my friend Bonnie) who said that no, he did not need speech therapy.

~Had a great Thanksgiving with both sides of our family.

December 2010.
~Got frustrated with trying to pottytrain little M. (I could have pretty much written THAT on each month too.)

~Wrote a letter to our NICU, thanking them for taking good care of D and us while we were up there for a month.

~Had awesome Christmas celebrations at home (Santa spoiled the boys!), at Auntie Tina's house (The in-laws spoiled the boys!), and at Nana's house (my side spoiled the boys!) ALL IN ONE DAY. *whew*

~Dylan turned one and I cried.

~Had a wonderful new year's eve celebration with my family!!

Hope you had a great year too!! 2010 kicked 2009's hiney, for sure... don't forget to eat your blackeye peas for good luck in the year 2011! :) God bless you all, and thank you for reading my blog this year.

Wednesday, December 29, 2010

The post in which I cry while I type

Dear Dylan,

Oh, my sweet, dear Dylan. Today, you are a year old. 365 days. 12 months. What can I say? You have changed us. It took 29 years to build me into me, and it took ONE year for you to change me completely.

I remember driving up to Oklahoma City the afternoon that you decided was your birthday. I remember touching my tummy and thinking, "this is it... you're coming to the outside. Life is going to be so much different now." You see, I loved you then... but I was a little scared of you. Scared of what you were NOT going to be able to do. Scared of what health problems you were going to have. Scared that other people wouldn't accept you. Oh, little baby boy. I don't say that with a happy heart-- I look at you now, and I think, "WHY was I scared of this perfect angel?" But I was. I didn't know what to expect.

Until 6:37PM, when you came out screaming. I didn't get to see you immediately, but Daddy did. He said "He's SO tiny! But he looks... I don't know, like a regular baby!" I know he couldn't find his wording, but I knew what he meant. He meant the same thing I was thinking... you looked like someone familiar to us. You looked like your big brother... you looked a little like Daddy... but you mostly looked like me. You had a perfect, c-section, never-been-in-the-birth-canal head. You had one small sprig of blond hair sticking up. Oh, you were so gorgeous. It was love at first sight... my tiny little 5-lb baby. I don't think I stopped smiling that night at all. And even though you were a couple of floors above me in the NICU, I felt good that you were so healthy looking and so BIG compared to the other babies (although 5 lbs is not big!)

Suddenly, who cared about Down syndrome anymore? Not us! You weren't Down syndrome, like we had been preparing ourselves for you to be. You were DYLAN. You were the whole, and Down syndrome just became a tiny sliver of you. I felt so silly for worrying for all of those months. We loved you immediately. We wanted you from the moment we found out you were coming. We got sidetracked down the scared path when we found out you were to have a chromosomal abnormality. We got back on track the moment you came in to this world. We haven't looked back since... well, maybe a peek or two, when we see other kids your age doing things you're not doing YET. But you will, my darling kid. You will. You're not that kid-- you're not Down syndrome-- you're Dylan.

And, Dylan, you are a special little boy!! People are blown away by how chill you are. Perfect strangers are drawn to your calm demeanor. Family members can't wait for their turn to hold you and experience you, because you just radiate beauty and wonder. You have the power to bury yourself deep into people's hearts-- you've done this all throughout this year! You are a joy. A joy, plain and simple.

Little man, you know what you want, and everybody knows that it's Dylan's Way or The Highway. :) If a new skill isn't your idea, you flat out won't do it, and in fact will get a bit upset if someone tries to MAKE you do it. But if it IS your idea? Look out, world!

This month, you've learned to clap by yourself! You wave hi and bye. You have a happy noise... I don't know how to type it out, but it's your "I'm happy and content" sound. You've added "Nana" and "papa" to your babble-list, but still no Mama! You eat so well, moving quickly through to stage 2 and 3 babyfoods. You are all over the place! You proved that you CAN sit up on your own IF you feel like it, which isn't very often at all. Your brother is your biggest fan and playmate. You can point out my nose (but not your own). You're going through a "hold me and never put me down" phase. You give kisses on cheeks... with tongue. haha. You're my handsome little wiggleworm, and I am just SO blessed. There's just no better word for it. Blessed.

You, at an hour or so old, December 29, 2009.


You, chillin' in your crib when you should have been napping, December 2010.


Happy birthday, my darling. Thank you for changing our world. May all of your years be as blessed as you've made this one for us.

Saturday, December 25, 2010

What Tired Looks Like


This is the very end of a 3-Christmases-Celebration Day. And yes, little M's head is covered. That's the only way he'll fall asleep. Strange, I know. :) And that's my mom snoozing away with them.

Merry Christmas, sweet blogger friends!

Wednesday, December 22, 2010

D's crazy hair and other randomage

Can we talk about this boy's hair for a minute?



I just love my little man's Alfalfa sprig. That sprig of hair is all he was born with. Except back then it was blond, and it's getting darker and darker by the day. And longer and longer. There's no secret-- my children are not great hair-growers. It took little M FOREVER to finally start growing his locks, and he STILL has the old-man-receding-hairline thing going on in the front. Dylan is no different... although his is more of a tall-forehead than the old-man-receding-hairline. Except his alfalfa sprig. It stands tall and proud and lets the world know, HEY, I'm not a COMPLETE baldy!

I just love, love, love this kid.

I also love, love, love the other kid I have too... the one that sits in his carseat in the back seat and barks out driving orders... ya know, since I haven't been driving for *coughs a number* years. His main driving "advice" is "There's the red octagon!! Stop the car!! Mommy stop the car now!!" All the way down the street. On every.single.street. This also applies to stop lights... same command, just "light" where "octagon" is. *sigh*

I stayed up very late last night wrapping presents. Yep, I procrastinated til now. It's all done now, though. Anyway, Dylan slept in (til TEN IN THE MORNING... bless you, child!), so I thought I could possibly sleep in too. Oh, no... the big one? Up with the roosters. I still thought I could manage a little bit of extra snooze time... until he brought me my cell phone, saying "this thing is making too much noise." I saw that it was a missed call from big M, so I called him back... APPAAAARENTLY, someone I know, who shall remain nameless *little M* called his daddy on my cell phone. *sigh*... I'd let him call my entire address book if it meant getting a few extra minutes of sleep this morning, except little M's been listening to lots of the 9-1-1 commercials lately, and I'm CERTAIN that'll be his next crank call. I love how stinking smart he is, but it's gonna get us all in trouble one day!

We're super excited for Santa to come in three more sleeps. Little M and I are going to bake him some delicious cookies, make a... um... well, interesting gingerbread house (we've opted to just use graham crackers, so we'll see how we do. haha..). Of course, the little dudes have matching PJs, so that'll be darling. I hope I remember to take lots of pictures, but I shall not promise anything, since I'm notorious for forgetting to take pictures during the important stuff of my kids' lives. *sigh*

We really, really hope you all have a Merry Christmas! Christ our Savior is born! :)

Thursday, December 09, 2010

A letter

I took a lesson from my bloggy friend Jenny and wrote a thank-you letter to the NICU where Dylan lived his first month of life. You see, I didn't THINK the feelings would hit me. I've been pretty even-keeled when it comes to my feelings about Down syndrome... but one thing I have NOT been so easy-going about is those feelings I had while Dylan was in the hospital. It is absolutely petrifying to live life not knowing what the next day is going to bring. I am a total comfort-zone type of person, and when my comfort-zone is being challenged... well, how I react really depends on the situation. My husband and I handled it the best that we could. There were mornings that we both woke up crying because we didn't want to be in the Ronald McDonald House anymore. We didn't want to be without our 2-year-old. We didn't want to go out in the cold, eat out (or in a hospital cafeteria.. or in the RMH kitchen) anymore. We wanted our family back to normal so badly, and all we could do was cry. There were evenings when we were so drained from the entire experience, all we could do was bicker. There were days where exhaustion set in, and all we could do was laugh. It felt inappropriate, but we had to. We had to survive how we knew how.

Dylan had the very best care imaginable in the NICU. He had awesome nurses, top-notch doctors, and nearly everyone we encountered was nice. They made a crappy situation tolerable. I wanted to thank them in person-- big M was not ready for that. I totally understand... we DID go IN the hospital a few days ago (Dylan had an appointment up there in their physicians building... we wanted to check out their new construction, since we haven't seen it in a year. It looks awesome!), but we didn't go to the NICU floor. So we decided that mailing our letter would be best. It is on the way to them now. I gave them this blog address to look at pictures of Dylan if they wanted to (so hi to all the OUMC staff that might stop by! :) ).

I don't think there's any way I could say "thank you" enough. Our guy is healthy, happy, and wonderful, and it's because he had such an awesome start.


**I guess I could actually post the letter, since I have access to it now. Don't tell anybody I wrote the other post at work. I will deny it. *ahem*

To the Doctors, Nurses, and staff in the NICU:


“Long after people forget what you said or did, they will remember how you made them feel.”

My name is Amy C*********. My son was born December 29th, 2009, at OU Medical Center, Children’s Hospital. He has Down syndrome, and he was born with doudenal atresia. He lived his first month of life in the Neonatal Intensive Care Unit at your hospital.

This year has been a long one in some ways, dealing with Dylan’s diagnosis and getting his health stabilized. In other ways, the year has flown by. It seems like only yesterday, your doctors, nurses, and staff were like our family away from home.

I’m writing this letter to thank you. Thank you so much for the outstanding care our son received. Thank you for taking care of his needs and ours. My husband and I felt like our world was starting to crumble in on us, having to stay away from our home and our then-2-year-old for so long. You really took good care of us in that time, making us feel welcome to stay in our son’s room during the day and making us feel involved in his care.

Now, I know you probably don’t remember us. It is a sad fact that you get a ton of babies in your intensive care unit, and I can only imagine how many you’ve seen since you saw Dylan. You might remember my husband in all of his Texas Longhorns gear, but that’s a different story. :) But the point is– you don’t remember us, but we remember you. And we always will. We remember sweet Jessica. She was Dylan’s very first NICU nurse on his very first night outside of the womb. We remember Kristen, who was great with Dylan and helped me get situated with pumping in Dylan’s NICU room. We remember Nicole, who was one of our favorites, along with Mary, Tiffany, Jennifer, and Ann. We remember Blake and Jena, and how they played music to our boy. We remember some of his night NICU staff too, even if we can’t remember everybody’s names. :) We remember Bonnie, Janie (who had to put up with me bawling twice. Sorry about that! heh), and the other Nurse Practitioners. We remember Kris, the lactation consultant, and how well she got us set up to give our son the best start in life. We remember the young ones at the front desk and how sweet they were. We remember Dr. Sheldon, Dr. Dannaway, and Dr. Gottipati, and how much help they were to us when he had questions. We remember the Pediatric Surgery team and how wonderful they were too.

Thank you for knowing that, when parents are in the throes of NICU life, it is important to make them feel okay about their situation. Thank you for training your nurses and staff to be compassionate and to field questions they’ve answered a million times over like they don’t mind explaining it again. Thank you for the tiring work that you do. I can only imagine how often your heart must break up there, dealing with sick babies or worse.

Dylan thanks you too, as he’s a healthy, happy almost-1-year-old now. He has a little hair, no teeth, but lots of chunk-rolls (thanks again, Kris!). He is learning to hit his milestones at Dylan-pace. He is such a wonderful baby. And he’s here, healthy and beautiful and wonderful, in part because of you guys. Thank you.

Sincerely,
Amy, Michael, and Dylan C********

Saturday, December 04, 2010

Adventures in Pottytraining



See this kid? This kid is 3 years old. This kid, at 2 years, 11 months, potty trained himself. This same kid regressed completely back in to Pull-ups when I had to go back to work. This kid? Knows EVERYTHING there is to know about potty-training. Everything. He can feel when he needs to potty. If you ask him where he's supposed to go peepee and poopoo, he'll say "In the potty. Not in my underwear or Pull-ups!" If you ask him what he should say if he feels like he needs to peepee or poopoo, he'll say, "I'll say, Moooommmmyyyy, I need to go Pottttyyyyyy." If he is wearing underwear, and he pees and poops on them, he'll say "Uh oh, I guess *insert character here* is going to cry now." Yep. We've tried guilt trips. In fact, we've tried bribery, telling him all of the people he knows that go potty in the potty, letting him watch US go to the bathroom, etc.

Conclusion? I do believe I will be packing Pull-ups in my son's care package for college. *sigh*

We're open to suggestions. He WILL sit on the potty. He's not afraid. Like I said, he was potty trained before I went back to work. So, your suggestions? We've probably tried that. But let's hear 'em anyway! :)