Thursday, July 29, 2010

this and that

Hey Everybody,

It's me, Jonah, checking in for a very short post. It's WAAAY past my bedtime. We've had an okay day today. I've thrown up twice, and Mommy is frustrated and says she just doesn't understand why I'm throwing up again all of a sudden. What's she complaining about? I'm the one who's puking. She says that, now that I'm on solid foods through my tube, the throwing up is WAY grosser than it used to be. I'd have to agree. Anybody got any gum?

Mommy got kinda mad at somebody on the phone today. She talked to a lady on the phone at 11am and at 2pm to try to get someone to come and switch out my feeding pump for a new one. Even though I'm trying to sleep through the night, that stupid pump is waking Mommy, Daddy, and me up like five times a night with its false alarms: "no food" when there's still plenty in the bag and "no flow" when there's no kink. Anyway she talked to this lady TWICE and told her we needed a new one before tonight, and it was after 7pm and she still hadn't heard anything. So she had to call the after-hours number and gave a different lady the 'what for'. Guess who has a brand new pump tonight?

Mommy was kind of a spaz today. The camera guy and interviewer were supposed to come interview Mommy and get some footage of us for a video for the new Brenner Children's Hospital site (hopefully going up in September), and she forgot ALL about it. They showed up at 4:30. Guess where we were? The grocery store. Not good. Daddy called us at 4:55 to ask where we were. He had just gotten home and they had been waiting there for 25 minutes not able to get in the house. Mommy felt SO bad. But she changed clothes (out of her Aquaphor shirt) and threw on some make-up, asked them not to focus the camera on her nasty carpet, and on we went! They were so nice, and I think they forgave Mommy so everything is okay. I was afraid they might be mad at her, so I made sure to give them my really sweet smiles and played like a good boy for my part. I wooed them. I'm cute like that.

Mommy says I have to go to bed now, but here are some photos from yesterday. They're all kind of blurry, but Mommy and Aunt Shaina were really trying not to use the flash. Gotta go... Mommy's giving me her angry eyes.

16 comments:

Skye is the Limit! said...

beautiful!

Penny said...

I tell you he is just about the cutest thing I have ever seen! Love his perspective on today's activities..... hope you gave them "what for" for not getting back with you!

Edling's said...

Cute pictures! I'm glad Jonah has a new pump for tonight! Go get 'em!

The Shelley Family said...

love all the pics! Jonah is sooo cute!
i have to tell you that in our local "paper" ksl.com there was an article today about a 20 something old "kid" who also has EB...I dont know what kind of EB he has...but it was cool to read about him anyway! get this..he SKATEBOARDS!!! ahhh!
if ya have a minute u might want to check it out. they described him as having skin as fragile as a butterfly wing! wow.
i know u know all too well about all of this....
keep blogging and THANKYOU for letting us in to "jonah's world". you are inspiring!

thorney said...

Jonah, I love your writing about your day. You have a talent for making your days the most interesting days ever. I had a feeding tube, a few short years ago, and that thing seemed to always go off at night telling us there was a kink in it, when there was not anything wrong. Then it would go off, with the alarm blaring, again and again. Always at night when were were trying to sleep. I think my husband disliked the tube even more than me, if that was possible.

I have you in our prayer book and we pray for you every single morning.

Blessings

Jarka said...

aaaw he's so cute :) and so grown-up in some way :) such a big boy! :)
I just wanted to let you know that my Mac added your blog to the list of the most visited pages and now every time I open a new tab there's that cute photo of Jonah in the middle of the page and I just have to click on it and check if something's new :)

love reading your blog - so inspiring :)

princessputter said...

Jonah please stop this puking its making your mommy a nervous wreck.Awesome how you got the pump you needed you`re a wonderful mommy.

Wanda Wilkinson said...

Jonah you are awesome!!! but buddy give you mommy a BREAK (before she breaks something in you :))--you know sometimes a boy just has to puke just to be a BOY.(it has something to do with that male gene

Maybe, just maybe you body is telling you if you won't eat & let your mouth taste the delicious food going down, then your body is making you PUKE so the have to taste the green junk coming up. I think if I was you I would decide to eat & taste the good stuff. What do you think??

Glad to know you got a new pump, sometimes mommies & daddies just have to take charge & let others know who the boss is--JONAH!!

Love the pictures, especially that second one where you are looking over your shoulder to see who might be chasing you...

You are adorable, I could eat you with a spoon, & that sweet face & eyes make my day.

Be kind to mommie & daddy & stop the PUKING!!!! it makes you stink :)) according to your mommie.

Love & prayers. trying to let me sense of humor come out today--hope it comes across ok--ps..my secret word is unialam--of course I work in a dr's office & at first thought it was urinal

Claire said...

Yay Jonut! I hope the puking calms down soon, you poor thing (poor mommy, too!).

Cxx

jenn said...

love his pictures...

Laura Kathryn said...

I love when Jonah takes over the blog! So fun. I can't believe how big he is getting...praying for you guys and hoping that this crazy NC heat dies down soon and Jonut can get outside some!

Miss Cook said...

LOVE that second picture with Jonah looking back over his shoulder - too cute for words!

Janice Dyer said...

Jonah,
You are a lucky boy to have a Mommy that loves you very , very much. I love the pictures of you. You are the cutest little boy!!

Jennifer said...

Good to hear from you again Jonah. It has been awhile. It was also good to see Deac's hair growing out and him out of his Snuggie! You are one incredibly inspiring boy. I have been praying for you to start eating FOOD (with your hands and mouth, boy!) so you better start 'cause you know what happens when God gets involved (in case you are wondering, it's MIRACLES!). I am so blessed to be able to pray for you and your wonderful family and to be part of your journey. Sort of makes getting up at 6am to go walk a bit more "worthwhile".... Hang in there! Jennifer of Southeast, NC (you know, the beach where we have SAND for little boys!)

Chris said...

I love a Jonah post. You are such a creative and entertaining blogger. Hooray for the new pump and I hope the puking is over. Jonah has a beautiful smile. Thank you for sharing your lives with us.

Jill said...

What kind of feeding pump do you have? If it is an infinity (teal) then you probably received a bad set of bags. We had the same problem with my son's pump, they replaced it and two days later we had the same problem. Come to find out it was the bags. I hope it has been worked out for you already :)