Thursday, August 27, 2009

six months today

Hi World!
Today is my Half-Birthday!!!


See?


I have had kind of a grumpy day, but Mom and Dad tell me if anyone is allowed to have a grumpy day now and then, it’s me.

Today I weigh 16 pounds, 5 ounces. Isn’t that awesome? Mommy says she is so amazed that even though I have inconsistent (what does that word mean?) eating habits, and I’m the best puker this side of the Mississippi, I still continue gaining a half a pound a week. She says it’s totally a God-thing. And it seems like my face is getting a little better (although it looked a little rough today).

Remember how it looked only a few months ago?




And my hands have been much better the last couple days. Mommy says she knows there will be good days and bad days. She says she’s afraid to get her hopes up. I keep telling her to chill out and embrace the miracle. Let God do what God’s gonna do, and quit pretending like you have any control over it. (Don’t worry I use my nice voice and my sweet eyes when I tell her. That crazy lady. You have to be careful with her… she’ll cry at the drop of a hat. Silly girl. But I love her. I just can’t help it.)

Like my shirt?

Mommy says it’s very descriptive of me today. I’m not sure what she means. Do I look like an alligator?

What exactly...

... is she trying to say???

Hey, look at my hair!

It’s finally coming back. Mom said I Aquaphored it as soon as she washed it today, so we embraced the Mohawk.

I sleep in my own room now.


It’s pretty cool. I have my very own big boy bed.



Some might argue that it’s not really a big boy bed, but only a crib. But I’ve never really liked Some anyway. I’m still waking up three to five times a night. Usually I only have to be fed once, sometimes twice. Mostly I just wake up crying and want to be flipped over or have my tooshy patted. Mom and Day say I’m getting too old for all that. But they just Keep. Comin’. Back. I’ve got ‘em right where I want ‘em.

I’ve decided to like my swing again. Well, actually I love it. I know I’ve been a little back and forth about it, but I’m pretty sure I’m stickin’ with it this time. Those lights are awesome. Mom and Dad put me in it every night while they set up for tomorrow’s dressing change.

And check this out...

Mom says it’s called an exersaucer. Whatever it’s called, it’s suuuuhweet. I like being up where I can see everything. Mommy hopes I start putting some weight on my feet soon. She can disguise her physical therapy as cool toys any day of the week. We all know I call the shots and am going to do what I want to do anyway and when I darn well please, so whatever. I don’t know what’s with the Dora bowl, the purple Bumbo, and the purple and pink exersaucer. But don’t worry, I continue to wear lots of muscle tees to prove my manhood.

♫ No matter what they take from me they can’t take away my masculinity. ♫

"So," you ask, "How is tummy time going?"

Well, see for yourself...

Still no. And Mommy, get OUT of my face with that camera and pick me up already! I already did my requisite five seconds!!!

This month I have learned how to make the sounds Ba and Ma. I usually only say them when I’m upset, but still, it’s something. I also know how to blow raspberries and stick my tongue in and out over and over again. I’m trying really hard to click it, but I haven’t gotten there quite yet.

I’m also reaching out and trying to touch most everything now. I can grip really light-weight things or cloths. I still can’t really hold much of anything, but I’m really working on it. I can hold my little lobster for a few seconds. I’ve come a long way just in this last month. Mommy says she doesn’t care how long it takes. She’s still just so proud of me. I’m not rolling over yet either, but Mom and Dad say I’m free to take my time on that one. I think they are really worried about what happens at dressing change time when I can do that little trick. They are in for it, let me tell ya.

I’m kind of hating baby food. I won’t open my mouth for it, and now that I can blow raspberries, I like to raspberry that stuff all over Mommy’s face. Get that mess out of here.

I will now rate the foods I’ve tried –

Apples – Delicious (when I actually open my mouth enough to get some in.)
Squash – Pretty Tasty
Bananas – Tolerable
Sweet Potatoes – Not so much. Too thick maybe?
Avocado – Don’t get me started. I’ll tell you where you can shove your…

(Sorry, I got a little carried away.)

And guess what? Aunt Kim got me a Half-Birthday present. See?


I thought it was pretty cool until daddy balled up the paper. That kinda scared me, and I started crying. She got me some cool foam building blocks. The package says they’re for building. Apparently Mom and Dad think they are for putting all over me.

I wasn't amused.


Thanks, Aunt Kim!

Mom says I’m too little this year, but her plan is to celebrate my half-birthdays. For year birthdays I get to have a party, friends, the whole hoopla. But for half-birthdays I get to choose a special activity to do with my family. I think it will really be neat. That way, since I have a winter birthday, I can do summer things for my half-birthday. Mom says she plans on spending many, many half and year birthdays with me.

Mom and Dad are so thankful for all the miracles God has already done for me in these short six months. Many people never thought I would make it to six months. Many thought I’d never come home from the hospital. But here I am. Strong. Brave. And healthy besides this stupid EB. It won’t get me down. Mommy says I’m the toughest, strongest, bravest person she’s ever met. She says I’m her hero.

She and Daddy thank God for me every single day. HE is making me who I am. And Mom and Dad think that Who I Am is pretty darn great. Blisters and all.

84 comments:

Anonymous said...

Love the pictures!

Laura A said...

Happy half-birthday, sweet sweet Jonah! It looks like you had a wonderful day! We all love you very much and are praying for you every day.

Tell your mom and dad we are praying for them too. Also tell them tomorrow is Sweet Tea Friday at Chick-Fil-A (well, at least at the one in TX!)

Hope you all have a happy weekend!

Love from TX!
Laura

Angela said...

Adorable. And he's bigger than both my boys were at 6months. Great job! Happy Half Birthday Jonah! May God continue to bless you and the lives of those He touched through you.

Tricia said...

6 months?!? Wow! Way to go. He does look a whole lot stronger and healthier. It is nice to be able to compare the old with the new. Our God is an awesome God, protecting and healing that sweet boy of yours. Before long, he'll be walking and talking and driving the car. Really, it comes sooner than you expect! I will keep praying, for you and for him.

Missy said...

Dear Jonah,
I think you're amazing. You make me cry but that's a good thing. We pray for you alot and I am very thankful that your mommy shares your life with us because she is a pretty neat lady. I tell my baby boy Caleb that he should write cool blog posts but he says only Jonah is cool enough to do that. Oh ya he also wouldn't eat much baby food at 6 months - finally at 8 months he's starting to eat better but still blows raspberries in my face. Sorry this is so long. Happy half-birthday little man!

Kirsten: said...

Happy Half Birthday Sweet Jonah!!! I must say the pictures in this post are my favorite...so far!!! He looks GREAT!!!

KK said...

I love half birthdays! You are my hero Jonah!

It Is Worth It said...

happy half birthday jonah! and you~i might add~are hilarious ;) i will read your post to our kids tomoro (they look forward to them) and then we will keep praying for you! :)

Thrifty Decor Chick said...

God bless him, he looks fantastic!! I'm so happy for you and your family, you are so blessed!!!

Sewconsult said...

Just down right precious.

Kristi said...

He is so precious! I am in love all the way here in Oklahoma! What a brave little guy. I am believing God with you for your miracle. Expect a miracle! I am so amazed by how much better his face is looking! To God be the glory!

Rebecca said...

Happy half birthday Jonah - you are an amazing little boy with an amazing mommy and daddy!

Anonymous said...

Happy Half Birthday to you, dear Jonah. May God bless you with 200 more half birthdays, filled with health, happiness and life's best. Miracles WILL happen. Keep the faith.

Rebecca said...

Jonah,
Sorry for taking up 2 comment spots, but I wanted to tell you that for your 1/2 birthday I bought a magnet - and now West Virginia can be RED on your map too!

Unknown said...

What a miracle Jonah is. He certainly is special. Not just just because of the EB, but because of his spirit. Those smiles he smiles... wow. I wish some of us adults could smile like that on even the days we THINK are bad. That boy of yours, this world is blessed to have. You are doing a fine job raising him. It is a great idea to celebrate his half birthdays, every milestone is a miracle indeed.

Stacy K. said...

I Cracked up with the one of Jonah with the blocks!
Such a precious little one. He's doing really well developmentally and has such an adorable smile.

Debby@Just Breathe said...

Happy Half Birthday Jonah
I love your post, great job!

Anonymous said...

What a cutie!! Happy half birthday, Jonah! We celebrate half birthdays in my family, too. We just do half a cake (with half a candle - it's just a short candle) and sing 'happy half birthday.' Half birthdays are pretty awesome :)

-Stephany

Anonymous said...

Jonah, I love it when you blog. You have such a way with words. You really tell it how it is. You are a little miracle and don't you forget it. Your mommy is ok when she cries! She just gets overwhelmed sometimes because God is so good to you, her and your daddy! I think doing half birthdays are such a great idea! I might even do that with my strong, brave little boy! Give the sweet potatoes a chance, you will end up loving them! Also, try making guacomole with the avocados! I think you will love it when your tummy is old enough to handle it! I bet mommy knows how to make it. Now you let mommy and daddy and whoever else love on you as much as they want to. You are really blessed to have so many people who love you!

Keep posting! I love reading your entries and happy happy half birthday!

Claire said...

Happy half birthday, you gorgeous boy, you!

Cxx

Jen said...

Happy Half Birthday Jonah!! I look forward to you celebrating many, many more!

ashpuck said...

Awesome post! Sweet baby Jonah is as precious as ever. I'm so proud of him. Happy half birthday Jonah!

~Ashley

Julie said...

Happy half birthday to Jonah! What a little miracle he his. I know this 6 months has been so full of ups and downs and joys and frustrations for you, but you are doing an AMAZING job dealing with Jonah's cruel disease. He is such an adorable guy!

Staci said...

You are a special gift Jonah...happy half birthday :)

Wanda Wilkinson said...

Happy half-birthday....looks like you are doing great!!! enjoy the foam block in the bathtub...then mommie or daddy can squeeze the water on your head (haha).

Awesome to see your updated pictures & the video LOVE to see you in action..rubbing them feet together was your way of telling mom you were EXCITED!!!

love you & your family

Prayers for a great weekend..may be you will let mommie got to church on Sunday ??? or maybe not???

Rochel said...

Happy half-birthday Jonah! We love to see pictures of you! We're praying for you :)
Ya know, Jonah, one infant to another, my mommy tries to get me to go on my belly too, and i hate it as well! I'm 9 months old and I still won't hang out there. I've pretty much decided I'm never going to crawl. .
I will say, though, just wait until you can stand up (with mommy's help) It's SOOO fun!
Have a good day!
love, Eli :)

Anonymous said...

I love Jonah's writing. Good for him.

Having a birthday close to Christmas, I had half birthday parties in the summer in the park.

Anonymous said...

Jonah, your blogs are the best! Happy half-birthday, sweet one, and many many many more. With all the good care you are getting from Mommy and Daddy and your grandparents and aunts and uncles...well, all this love and goodness will be a precious part of your life. You have no idea just how many lives you have impacted in such a short time.
May God continue to bless you and your family in a special way.
Sandy W.

Jenny said...

Happy 1/2 B*day, sweet boy!!!

Lari said...

Happy 1/2 Birthday Jonah! You're such a cutie and have a great sense of humor.

Rachelle said...

What a great post! Happy half birthday Jonah! you are reaching lots of great milestones and are obviously super smart and well on your way to saying lots more consonants! keep up the growing! I love seeing your cute pictures.

Rachelle

Mrs. O said...

Happy Half Birthday, you brave boy! I'm still praying for you and wishing you many many more half birthdays (and whole birthdays) with your mom and dad.

Sabrina said...

Happy half birthday Jonah! You rock, seriously. And your pretty cute, ok REALLY cute. Thanks for telling us about your day. You have a very captive audience.

Toni :O) said...

We ALL think you are pretty darn great...and those pictures are just darling! Happy Six Month Birthday Sweet Boy! I thought those foam blocks were an awesome gift. What a lucky boy! He's growing beautifully and doing so well....we're all thankful that our prayers are working...Yay! Have a great weekend sweet family!

Mindy said...

Happy Half Birthday Jonah!!

Misty Rice said...

Too cute. As I was watching the video, my little 16 month ran over to see who was singing happy birthday and then we watched the video together.

Happy Birthday Jonah.

Kristen said...

Happy Happy half-birthday sweet boy!

Jackie said...

You are one amazing Mom! Jonah is THE most handsome 6 month old I have ever seen. He is blessed as you are blessed also! May God be praised!

Auntie D said...

Happy Birthday Jonah! Mom and Dad it looks like you are doing a great job! Thank you God for so many answered prayers and thank you to you all for sharing your story with us. Keeping you all in my prayers and celebrating today with you!

Anonymous said...

Happy Half-Birthday!

Peace and Love-
Amber

Janel said...

Happy Half Birthday Jonah!! Wow, I can't believe its been 6 whole months!! I cried tears of Joy for you today!! What a fantastic day God has made!

Maybe on your first birthday your Mommy and Daddy will let me make your cake - btw - CAKE ROCKS!!! Its the BEST food EVER - not at all like that yucky avacado!

oh well - I hope you have a fantastic 1/2 birthday!!

btw - you blog so much better than your mommy! hehe!! (don't tell her I said that!)

Janel

Amanda said...

Happy half-birthday, Jonah man!!

Signing Out said...

Lifting up that sweet boy in prayer! I would love to pick him up and give him a hug, but I know that God is doing that already!

Happy 6 months!

Jane

Summer said...

Patrice, I love reading your blog! I love hearing about little Jonah and know someone from Iowa supports you!

Baby Bird said...

HAPPY HALF-BIRTHDAY BABY JONUT! Do you think you will try to make the picnic at Tanglewood on Sunday? Wow! I love the foam blocks...where did you find those?! WOuld love to have some of those for my house!
Have a great day of celebration!
Love & HUgs & baby head kisses...Aimee

Unknown said...

Happy half birthday, Jonah! I love when you write from Jonah's perspective. Don't tell my kids I said this, but I am pretty sure Jonah is the cutest baby ever.

Anonymous said...

Awesome post, he's so cute! And, this might be dumb thing to ask, but does his face hurt? As I've read your blog (and a few other EB blogs) I know the dressing changes can be painful, but do the skin sores hurt all the time? I hope not....hard to think of Jonah or any baby being in constant pain. Thank you so much for sharing your lives with us out here. You're in my prayers -

JB

Anonymous said...

Happy Half Birthday, baby Jonut!
I thank God for you too. So handsome, beautiful and precious.
Great Job relaying his thoughts, Patrice:)
Carlee

Jen said...

Happy half a year birthday Jonah!! - we have been watching your grown from a teeny tiny little baby into the gorgeous little man that you are today, you look fabulous!! God bless you darling!
Doug and Jenny from Perth, Western Australia xoxox

Ellen said...

Happy 6th month Birthday Jonah! My 8 yr old ds has asked for a half year b'day all summer! His b'day is the end of Dec and he would love to have a pool party for his b'day!

I love the pic of Jonah with the block on his head! The close up one! But I really love all the pics of Jonah!!

Stacey said...

Happy half birthday Jonah!! You are beautiful!

New Momma said...

what a precious little guy! Happy half birthday, Jonah and many blessings in the months to come.

Anonymous said...

Happy Day, Jonah! You are such a beautiful, big boy, and you are doing such a good job growing and learning! Your parents are doing an awesome job, too! We can't wait to celebrate with you in person some time!! A special hug from your friend, Caroline.

Love, the Provosts

Anonymous said...

Happy Birthday Jonah! I with your momma, sweet boy, I think you are just one of the strongest people I have ever come across. I can't wait to see you celebrating the big 1!

Anonymous said...

Happy 1/2 birthday big boy. You are so sweet. I just love those blue eyes. Adorable you are Jonah.

Country Roads said...

Just LOVE when Jonah does a post. This is just precious! He's getting so big and making great advancements. We'll keep praying in SE Nebraska!

Lighthouse Photography said...

What a sweet post! Thank you Jonah and Happy Half Birthday! I cant wait to see what you you ahve to say on your year birthday :-)

Kathy said...

Gorgeous photos of a beautiful boy! What a sweet smile.

Anonymous said...

Happy 6-month birthday to Jonah!! He is so adorable!

Katie in NE

Anonymous said...

Jonah is so lucky to have such a loving family. I check the blog every day to read about the highs and the lows. The pics are wonderful. Thank you so much for sharing Jonah with us. Happy 1/2 Birthday, buddy!!
Meredith

LB said...

I love it! He is precious.

Happy Half Birthday, Sweet Jonah.

And I might just steal that half-birthday celebration idea because my daughter has a Jan bday.

Michelle Whitlow said...

so so sweet :)

Marisa said...

Well, you've got me laughing and crying in the same post. Jonah--you are a precious, sweet boy with two precious, sweet parents and a God who loves you more than we can measure. A very Happy Half-Birthday to you. That is, indeed, something to celebrate.

Love,
Mis

Jane said...

Oh such a sweet post! Happy half-birthday Jonah. You have come a long way and doing great. You are a darling little fellow. Thank you so much for sharing more pictures and the video. Always look forward to seeing them. Still have all of you in my prayers every night.

Brandy said...

I love reading your blog! Lil' Jonah is getting so big! =)

Seen this on the news this morning and thought that I would share w/ you.

http://www.abc3340.com/news/stories/0809/653895.html

Have a good weekend!
Brandy

........ said...

I LOOOOOVE it when Jonah decides to post! It always makes me laugh! He is so sweet, and cute, and chubby and just completely irresistible! Yeah six months! Man, so many exclamations!!!!

Really though, I am just so happy for you all that Jonah is doing so well. It has been such a blessing to have front row seats to his little life so far. Thank you so much for allowing me to travel this journey with your family and for sharing your sweet Jonah with us all everyday. Thank you also for trusting us all enough to share the bad days too. Loves to you all...

Erin said...

Loved this post! He looks wonderful!!!!

watersea said...

Love your blog, and this post was great! I love the narrative from Jonah's point of view!

Anonymous said...

Amen, little man! :)

Anonymous said...

Are you like so kidding, He is so beautiful! I just LOVE looking at him. I only wish I could see him in the flesh! Here is a song for you Jonah: He's still wroking on me, to make me what I ought to be, it took just a day to make the moon and stars, the sun and the earth and Jupiter and Mars, how wonderful and gracious He must be, He's still workin' on me! God will always Be with you, don't loose faith! ( or Mommy and Daddy)
Brenda In Wisconsin :)

Jenny in CA said...

Dear Jonah,
I just love when you blog and look forward to your blogs the most. They are hysterical.

You are an adorable and precious boy and lucky to have such caring and special parents. Happy half birthday!

Mama10EE said...

Jonah, I could eat you with a spoon (if I was cannibal, which I am not, so don't worry). You are just so darn cute, and you are such a brave little boy. Happy 1/2 birthday sweet guy.

Lauren said...

happy half-birthday, little man!

love the photos and all the fun new things you're doing :)

Beverly Wooley said...

Jonah, you are growing SO big and more precious every day. I love the blog posts that "you" write best of all. You are such a blessed little boy to have such a talented mommy. God sure knew just which mommy and daddy to give you to. They're the best. They take SUCH good care of you, don't they?
Keep being such a sweet boy. There are many of us out here in the blog world that count it such a great privilege to get to pray for you. Jesus loves you, little man, and so do we!

Devon said...

Beautiful! What a great post!! You are SUCH A SWEET BOY, little man!

Dakin has the same Snappy shirt!

Heather said...

Beautifully written. Your love shines through for him in every post, what a lucky little guy!

queenmari said...

happy 1/2 birthday jonah!!!

i love all your pictures and you are sure growing up and getting cuter with every passing second of the day.

we keep you in our prayers, every day, here in seattle. your mommy and daddy will have to show you where seattle is--it is far away from you, clear on the other side of the country.

enjoy a wonderful weekend.

blessings, mari

Barbara said...

Happy Half Birthday, sweet Jonah. I look forward to reading about your days! Prayers for you and Mommy and Daddy. Thanks so much for letting me 'pop in' on your life everyday. There is so much hope on your mommy's blog that I just have to smile when I read!

Diorella N. said...

Happy half birthday jonah! You are getting so big. i love your monthly post. so cute.:)

Anonymous said...

Jonah- you are the luckiest little man to have a Father in Heaven who loves you as well as AMAZING parents who adore you and take such good care of you. Praying for a happy healthy first year!

Matt and Patrice you are such incredible examples of grace and mercy. I will keep you two in our prayers as well...

Sandy said...

Happy half-birthday (two days late) sweet, precious Jonah!!! I love you and continue to pray for a miracle!

Love,
Sandy in King

Anonymous said...

Happy half birthday Jonah! You a such a big boy already and getting cutier and cutier every time mommy posts another pic of you. Keep up the good work buddy. Sending my love,Darlene

Melissa said...

What a juicy post! Great pictures and great commentary on your life these days, Jonah. Love you, little babe! Still praying for you, and agreeing with your mama for a miracle!

Alison said...

I am so happy to see that your family is doing well! Jonah is absolutely precious! Happy 6 months Jonah!!!! :)