18 months today

Hey Everybody! It's me, Jonah!

Today I turn ONE AND A HALF years old. I'm getting to be such a big boy!

I weigh over 25 pounds now, and I've jumped from the 25th to the 75th percentile. Mommy says it's 'cause of all that avocado and flaxseed oil she's been giving me. I've had many eating ups and downs (mostly downs), but we're so thankful for the g-tube, so I can get all the nutrition I need, no matter what. Mommy's just started giving me some yogurt, again, once a day, and it's going pretty well. I sleep about 11 hours a night and take one nap a day. It's not that long (45 minutes to an hour and a half), but I stay in a good mood most days, so Mom doesn't mind too much.

I can crawl all over the place now. And guess what? I can pull up to standing now!

My favorite toys are still (and always, forevermore) my ball popper...

my stacking cups and shapes, any ball, this new toy that my Nana got me that's a fun light-up wand sort of thing, and books. I LOVE BOOKS, especially the kind with flaps. I'll sit and let Mom and Dad read to me. My favorite books are "Barnyard Dance," "Peek-a-Boo I Love You," "A Cuddle for Little Duck," "Mr. Brown Can Moo, Can You?" and "Where's Baby's Mommy?" I love music and anything with a rhythm. My favorite shows are "Yo Gabba Gabba," "Wonder Pets," and "Jack's Big Music Show." I also like "Curious Buddies."

One of my other favorite toys is my new activity table. I love it and it's the perfect height for kneeling or standing.

I'm getting more interested in non-toys these days. I love to explore, and am really learning that I can get into things. I love playing in the dishwasher and trash can. I'm such a fun age right now. I've learned to give hugs and kisses. I go "mm-mmm" when I give hugs, and I give great kisses.

I'm becoming so affectionate, and Mommy thinks I like snuggling and hugging more than ever. When Mom or Dad sit or lie down on the floor, I just can't stop myself from laying my head in their laps or crawling all over them. My favorite time of day is right before bed when Daddy takes me upstairs and we read books and play basketball. It's our "Man Time," Daddy says, and I love it. Last night he was teaching me how to throw my hands up and say, "Touchdown!"

I'm repeating lots of things. I'm not consistent in what I say, but at one time or another, I've said or repeated: dog, kitty, baby, bear, hello, bye-bye, ten, circle, moo, ha-ha-ha (what a monkey says), meow, pop, ball, daddy, up, down, nana, shaina, granny, and deac. Mommy thinks that's it but she may be forgetting some. She thinks maybe I said "mommy" yesterday, but she's not sure. She doubts it. I like to drive her crazy like that.

These last three months were busy and exciting. I guess the biggest thing is that this is the first time I've ever made it from well visit to well visit without having to go to the doctor's office. I've been so healthy!

In other news, Mommy gave me my first full hair cut...

I got to go to the Children's Museum for the very first time...

and to the beach (for the second time, but I don't really remember the first)...

I got to go swimming for the first time (LOVED it!)...

And I got to take my first stroll by the ocean...

and Mommy bought me my very own big boy shoes (even though she still calls me her baby)...

The hardest thing about the last three months has been the heat. It has been H.O.T. We hardly go outside at all, except to check the mail. I spend my days longingly looking out the front door...

waiting for the day I can break outta this joint...

I'm enjoying getting out more and more, although I'm still a little apprehensive in new places. I still like going to Target, the grocery store, and I love going to church and playing in the nursery. I'm not ready for Mom or Dad to leave me there yet, but I'm getting more comfortable. Mommy can't wait until the Fall when we can get out and EXPLORE. She has big plans for us, including but not limited to: the zoo, a pumpkin patch, every park in Forsyth County, the Farmer's Market, the fair, and restaurants with outdoor seating. We can't wait. I mean, our house is cozy and all, but enough already! We want OUT!

It's been a great three months, and Mom and Dad know that the best is yet to come. They just love me so much, y'all. Sometimes it's almost suffocating...

How embarrassing. They are so proud of me and can't believe how far I've come and all the things I've accomplished. They thank God for me all the time and can't wait to see what He has in store for me. They know it will be something great and are so excited for my future.

And guess what else? Mommy says we get to eat the rest of my amazing birthday cake tomorrow. I mean, they'll eat it. Me, not so much. Who do you guys think I am? Let THEM eat cake.

Thanks for praying for me and following my story and letting everybody know about EB. I'm doing so well, resisting infection, gaining weight, breathing easy... all because of the prayers you've prayed. Mommy, Daddy, and I just can't thank you enough. You're loved and appreciated. So, THANK YOU!

fifteen months today

Hey everybody. It's me, Jonah.


I know it's been a while. Mommy has been a MAJOR computer hog. Something about me Aquaphoring her screen and such. Whatever.

Today I turned 15 months old.

A lot has gone on these last three months.

Mommy and Daddy started leaving my toes unwrapped. They said my toes were starting to web a little bit, and so, well, nakey toes for me!

Aren't they the cutest? They're a little blistered, but nothing I can't handle. Mommy says I'm so tough. And my toes are getting a little tougher too with time.

I'm going through a very weird stage right now. I can't talk, but I have so many opinions and that makes me VERY frustrated. See?


Yes, it's true. I've mastered the fake cry. And the fake whine. And the fake tears. And the fake angry scream. I'm a big faker. Still cute though.

These last few months have been super busy with lots of firsts.

Daddy and I made our very first fort...


I got my very first haircut (did not love it)...



I had my very first Easter AT HOME...


I went on my very first Easter Egg Hunt...





I learned to clap (and had a love affair with it for several weeks)...



I wore my very first collared shirt...


I learned to sit up on my own...


And best of all - I learned to CRAWL!

Can you believe it? Mommy just burst into tears when I first did it. She says I'm the cutest little crawler she's ever seen. I'm slow and cautious, but I am definitely on the move. Mommy knows the real trouble hasn't started yet. Just wait until I get confident. She won't be able to stop me.

And guess what else? I've started going into the nursery some at church. Mommy still goes with me since I'm so high-maintenance, but we're getting there. I love to crawl around on the floor and play with all the different toys. Mommy says it's good for me to be with kids who are close to my age. She says that in some cases, peer pressure is a good thing. I'm going to remind her she said that when I'm fifteen.

I've gotten to take a couple trips over the last couple months.

To celebrate my big brother in April, we went up to Smith Mountain Lake in Virginia. I did not love it.


Most of the time Mommy and Daddy spent putting me in the car and driving around just so I'd be happy.

And last weekend, I got to go to my (girl)friend Quinn's birthday party. *Please excuse my Mommy. She interrupted me with her parenthetical addition.*


And the biggest thing that happened in these last few months is this -

Yep, that's right. I got a new friend. His name is Mic-key. Mommy says it's going to help me get all the calories and fluids I need to be healthy. It's caused me some problems, but Mommy thinks we're getting things under control now, and that I'm doing better. I don't get much formula anymore. Mommy now gives me all kinds of crazy blended food through my feeding tube. Tonight I had Baked Ziti. Can you believe that???

Anyway, back to the point. Here I am the afternoon after my surgery. I had a couple really sleepy days, but I recovered so quickly. Mommy is not surprised in the least. She says I'm a champ.

Before I got into my "everything makes me grumpy and don't even think about breathing in my area" stage, I really loved to be outside and swing at the park. Most of the time, when nothing else makes me happy, being outside will.


I'm still loving my ball popper, and I LOVE pinwheels.

One of my favorite things to do is play up in my room with Daddy. I have one of those basketball hoops hooked on my closet, and we play basketball. I pass it to him, and he shoots. Sometimes he holds me up there to let me shoot, but I refuse to let go of the ball and just dig hangin' out in the air. I like to give Daddy's muscles a workout. I love my Vtech Alphabet Train. Some wonderful ladies at Daddy's work got it for me for my birthday, and it is one of my most favorite toys. I also really like the bubble machine my Nana got me. It makes like 1,000 bubbles a minute. It's out of control.

I weigh between 22 and 23 pounds. I'm in the 20th percentile for weight and the 35th percentile for height. I'm not saying any words yet. Mom thought my first word was "Deac" but she hasn't heard me say it for several weeks, so maybe it was just her imagination. I "talk" all the time, though, and Mom says that once I'm saying real words, she thinks I'll never stop talking. She hasn't a clue where I might get that from. I'm sleeping through the night and napping like a champ. It only took me a year to figure it out, but these days, I love sleep.

No matter what, sleeping or not sleeping, eating or not eating, being happy or fussing nonstop, Mommy and Daddy love me so much and wouldn't trade me for the world. They can't believe how far I've come and all of these milestones I'm reaching. It's been an amazing three months, and Mommy and Daddy are so excited to see what else God has in store for me. They're pretty sure it's going to be amazing.

twelve month post

I just posted Jonah's twelve month post, but I wanted it to show up on the 27th so my posts would be in order. You can either scroll down a couple posts or see it here.

Sorry for back-posting. I'm anal like that. I know many of you can appreciate my OCD qualities (KM and KH, I'm talking to you.)

twelve months today

Hi Friends,

It's me, Jonah.

Today I turned twelve months old. Mom says that means I'm ONE YEAR OLD. She said that in a big voice and put one finger up on her hand, so I guess it's a pretty big deal.

What's that?

I'm a big boy???!!!

Right on.

Don't tell anybody but on Saturday, I heard Mommy say that the next person who called me a big boy was getting punched in the face. I think she wants me to stay her baby forever.)

I'm getting so big. I weigh 21 lbs 9 oz now. I'm 30 inches tall, and my head circumference is 45 cm. I'm in the 25-50th % for weight and in the 60th % for height and head circumference. Dr. B says my growth is GREAT! I'm staying right on that curve. I'm cool like that.

I have six teeth now. Two on the top and four on the bottom. See?

I have all sorts of noises these days, and I'm babbling like a champ. Mom and Dad can't decide if I'm saying any words yet, although I keep telling them that I'm saying all sorts of things. It's not my fault they haven't learned my language. G seems to be my favorite sound, and my favorite things are growling, blowing raspberries, and fake coughing. Mom is pretty sure I'm trying to say Deac, but it's not quite identifiable yet. I also regularly say Ma Ma and Da Da, but am not really saying them TO Mom and Dad. When I see a photo of our family, I can point out my Mom and Dad when asked. Mommy says I'm so smart.

Usually when you put a book (or in this case a birthday card) in my hands and open it up, I start reading. Most of the time it sounds like this, "ahhhh tickle tickle tickle a guh duh guh duh guh duh." Mom says it's just about the cutest thing she's ever seen.

My favorite songs right now are "Malti," "Do-Re-Mi (Sound of Music)," and "Jump Up." I dance now when I hear music. I LOVE music. It calms me down during dressing change or when I'm upset (like today at the doctor when I had to get four shots and a big vile of blood drawn from my arm).

Between Christmas and my birthday I have lots of new toys. I just opened my birthday presents so I haven't really played with them yet, but my (old) favorites are my ball popper...

my exersaucer...

... my pull back cars that zoom across the floor, and still my basketball goal.

For a kid who can't even crawl yet, I sure am hard to keep up with. Mommy can't leave me alone for five seconds or I've fallen over (on purpose), leaned forward and am about to fall on my face attempting to crawl, or I've rolled half way across the room.

I'm eating a little better these days. I usually drink around 30 ounces a day (27 cal formula) and am starting to show a little more interest in solids. I have a really bad gag reflex though, so right now we're mostly stickin' to purees. Otherwise I puke up not only my baby food, but also my previous bottle. I'm still having gushers every two to three days. Too much information? Oh, my bad.

I'm becoming less and less interested in TV these days (too busy trying to move around), but for a few minutes at a time, Mom can sit me in my new toddler chair and I'll watch some Jack's Big Music Show or Yo Gabba Gabba.

I want to crawl so badly I can barely stand it. I can get my hands out or sometimes my knees up, but I haven't figured out how to do both at the same time. I can put weight on my feet and stand with support, but when Mom tries to lean me over to help me get into a crawl position, instead of going to my knees, I stay on my feet and put my hands on the floor, so my butt's straight up in the air. Mom says I may want to look into Yoga.

Mom and Dad can't believe how far I've come in this last year. On February 27th of last year I was born in TERRIBLE shape. There was not a whole lot of hope for my future. On February 28th, I stopped breathing, and Mom and Dad thought I was going to die. I spent 32 days in the NICU. I had to go back to the hospital over Easter for breathing issues, and have been on the verge of a g-tube more times than I can count (you know, because I don't really count yet). But so far, I've stayed infection free and haven't been back to the hospital (except for doctors' appointments) since last April.

Mom and Dad say they love me sooooo much (they tell me about a MILLION times a day), and they don't take one day for granted.

They think I'm the most beautiful, perfect little boy baby in the whole world.

They are amazed at what I've overcome and what God is doing in my life. They know I have a big story to tell and look forward to many, many, many more years for me to tell it. And thanks so much to all you guys who have come along on the journey. Mom and Dad say to tell you how much they appreciate the love and support. You guys are the BEST!

(Thanks to Aunt Katherine for the photos of me with my ball popper, in my exersaucer, and in my chair.)

happy birthday, jonah

Dear Jonah,

Today you turn one year old. I’m fighting back tears as I write this to you. Some of them are happy tears, some sad. There are so many emotions I feel when I think about this day last year and pretty much all the days since.

Daddy and I waited so long for you. We prayed for you every night on our knees. We could not wait for you to come, but after losing your big brother, we were so scared. The night before you were born, in tears, I cried out to God that he would let you live. I checked your heartbeat every few hours, just to make sure things were still okay. I waited on pins and needles. I hoped.

We went to the hospital very early in the morning, and guess what? I started having contractions on the way. We think it was your way of saying, “I know you guys planned this, but it’s cool. I’m ready to come anyhow. Just lettin’ you guys know that I call the shots.” We waited all day for you.

We were so excited.

Everything was ready.

Then, at 3:50 in the afternoon, God gave us you.


And we were breathless.

Sweet Jonah, you were not what we expected. Something wasn’t right. This was not the way it was supposed to be. Why were your hands, feet, knees, and elbows completely raw? Why were there blisters on your face and head? What was wrong?


But, still, you were perfect.

You were beautiful from the moment you were born. Blonde hair, blue eyes. I could see Gabe in you, but you had your own look. Beautiful. Really, I know everybody says, “All babies are cute,” but most babies look kind of funny and squishy when they’re first born. But not you. You were adorable from the first moment.

We were elated and relieved that you were here, alive and breathing. And we were heartbroken and devastated, terrified that you would not be with us for long.

But here you are today, Jonah, a whole year old.

You’re our miracle.

And you are still completely perfect, beautiful, and you still leave us breathless.

I just want to tell you today how much we love you, how much you’ve changed our lives for the BETTER. You are far more wonderful and amazing than anything I ever could have hoped or dreamed, and I ache for you to know how much we love you. I don’t think we could love you any more if we tried. You’re the light of our lives.

So, Happy First Birthday, my sweet Baby Jonah.

We pray and wait in expectation for many, many, many more.