Saturday, June 19, 2010


We've had a fairly uneventful day. Jonah let us sleep in until a little after 8:00, and then we fed him, did dressing change, let him take a nap, and then did another feeding. I tried to get him to like eating again by putting him on a strict diet of Chocolate Ice Cream, but as you can see, more ended up on his face than in his mouth.

Then we headed out because Deac is STILL cold, and we wanted to get him a shirt so he wouldn't have to keep wearing his bulky jacket. We did get him a little shirt on clearance for like $3.00, and we also found this -

That's right. My dog has a Snuggie. You wish you were so cool.

While we were out, we bought Jonah a few new toys. I wanted to get him a few new things specifically to reserve for feeding times - partly to make eating something special, that he WANTS to do and partly because I'm trying to entertain him without so much TV. I hate it. I don't mind some TV or even a moderate amount, but between general play time, dressing change, the fact that we can't play outside and feedings, he's on TV overload. Yuck. I would so much rather him be actively DOING something than just observing something. I do love the educational shows and the most recent DVD purchases (ESPECIALLY Curious Buddies), but I want TV to be a last resort.

This look says to me, "Take your eyes off my toys and slowly step away."

So that's about it. No big plans for tomorrow. We'll celebrate with The World's Best Daddy around the house and hope to make it to Church. It's always hit or miss for us. Jonah threw up his entire last feeding tonight. I have no idea why. BUT right before bed, he did willingly take two ounces of yogurt and two ounces of oatmeal. I guess he'll eat when he's starving. It makes me want to NOT feed him by the tube to see if he gets hungry enough to eat by mouth. I know it would mean one missed meal, maybe two. I'm not brave enough to risk the calories yet, but I really think it would make a difference. He's never known how to read and satisfy hunger cues. Even if it did make him eat, I know he wouldn't eat enough to get the calories he needs. Even when he's eating "well," he maxes out at about four ounces.

Okay, my eyes are droopy as I type, so I guess that's it for me. Happy Father's Day Eve.

(Please forgive the poor quality of these photos. They're cell phone shots. I ordered a new battery for my camera and am hoping it will get here by Monday or Tuesday. I'm not even sure that's the problem, but I sure hope it is.)


Anonymous said...

Just wanted to drop by and say Im praying for you guys...I dont usually comment, but have you all in my prayers. Jonah looks so grown up in that last picture :) Keep up the good work.

flynnfamily said...

He looks so big in the cart with his toys. The haircut is so cute on him!

Laura A said...

Looks like he got some cool stuff - Jonah, that is (although Deac's Snuggie is pretty enviable!)

Anyway, hope Matt has a great Father's Day - we're still praying!


Claire said...

Praying for you guys. And I *love* Deac's snuggie!


Jennifer said...

When you are ready it will be time to let him get hungry and skip a feeding. You will know and you will be ready. Don't push yourself so hard. He is trying to control his world. ALL toddlers (and some much older, read: adults!) want to control their world. It's the 'stage' and it is SO hard as a parent to go through it, especially when you see the negatives of it. One of the "joys" of parenting. Give yourself some credit. You have made it so many months. Remember when you were scared to come home from the hospital? You have come a long way baby (just don't start smoking on us!). I also want to say that we also have a VERY cold dog. I bought some very cheap fleece receiving blankets and she makes a nest in them. So cute. She mostly has them in her kennel but in the winter we let her have one or two on the couch. Maybe Jonah has some old ones to share? Good news on the eating. I like that you are going to have special "eating only" toys. Don't forget to give him "food" things (cups, spoons, etc) that are safe for him. Mine LOVED (still do) the turkey baster. I could get them to do all sorts of things for that one! HA! Praying for you, loving you, wishing Matt a happy day, rejoicing in the small steps (on the way to greatness) and ready to bash some old ladies in the head for you... Just let me know! Jennifer in Southeast, NC

Tanya said...

Just wanted to say hello... my name is Tanya, I'm a neonatal ICU nurse in Orange County. I found your blog from Bella's page... I actually took care of her and Daylon at CHOC :) I've been doing a lot of research trying to make my hospital a EB-friendly place, but I can easily say the thing that has struck me the most about EB families is how amazing you all are!! I enjoy following your posts... and often find myself laughing out loud (a dog snuggly... who knew!?) I hope your family has a wonderful Father's day!!


Anita said...

He gets cuter every day!! Tripp has the animal sound school bus!!! Weird animal sounds huh!?!? Hope Matt had a great fathers day!!

Anonymous said...

I can not believe you got your dog a snuggie. That is so funny! And Jonah does look like such a big boy in the shopping cart, and he is so cute with his new hair cut:)

PS. I heard the Before the Dawn song and I abosolutely LOVE IT and think of yall everytime I hear it:)

Praying for you!
Donna in NC

Anonymous said...

Sorry, Before the Morning is the song.

Donna in NC

The Smittys said...

jonah looks like he could easily be 3 in that picture! he is soooo cute! maybe it's the big boy haircut!

and i can't believe your dog has a dang snuggie. i'm so jealous. does he know that he's the envy of every pansy dog there is? his face doesn't show it if he does! ha!

Jenifer said...

I told you Curious Buddies rocks!!! Quack, quack, waddle, waddle, all day long...that crap gets stuck in your head! Ha!!