Saturday, October 24, 2009

eating update

Just checking in... Very tired and determined to be in bed, asleep, by 10:16.

Jonah did a little better today. He took a little over 22 ounces by bottle, which is a great improvement over the last couple days. Unfortunately, it's still probably not enough. And it's a little easier to get it in him when Matt's here, because when he refuses to eat for one of us, sometimes he'll eat for the other one. He probably ate about two ounces of solids.

We have a GI appointment at 8:30 on Wednesday morning, so I suppose I'll find out more then about our timeline, how many ounces he'd need to be taking, how much weight he'd need to gain etc to NOT have the g-tube. Or maybe they'll schedule surgery. I don't really know what we're going to find out at that appointment.

We were supposed to go to a pumpkin patch today, but since it was rainy and gross for a lot of the day, we didn't get to go. But I am determined to have that memory with Jonah, and tomorrow will be our last chance, so we plan on going tomorrow. Unfortunately that means we won't get to go to church because we'll have to get dressing change done before we go. Bummer. Typically I wouldn't put a pumpkin patch before church, but since we can't really get out during the week, if we're going to go, tomorrow's it.

Okay, I'm off to bed. Thanks for continuing to pray. We have faith that our miracle is coming... exactly what form it will take and when we don't know.

But hey, if God decides to give us an appetizer miracle of Jonah eating and no g-tube followed by a big ol' helping of complete and total healing, we'll sure take it. I won't even ask for dessert.

23 comments:

Rochel said...

Oh, enjoy the pumpkin patch! We had such a fun time taking our son there :)
We'll be praying that Jonah eats, eats, EATS! I LOVE that God still performs miracles!

Katie said...

Do you like pumpkin bread? I'll make a loaf in the morning and bring it. I'd say I'm just being nice, but I bought too much pumpkin and am trying to get rid of it. So really, I'm begging. Please take some bread. :) Is it weird to bring pumpkin bread to a pumpkin patch? It's like showing them it's all they have to look forward to. It's like eating KFC in front of a chicken. I'm rambling. I need to pump and go to bed.

Amanda said...

I drove a whole hour to get to a pumpkin patch yesterday (ok yes, I'm a bit directionally challenged). And you know what? We got there and waded through the mud just to read a sign that said:

"Please do not pick the pumpkins."

Really?! -sigh- Oh well.

Hope your adventure turns out better!! I look forward to pictures!

Kelli said...

Amen sister!!! Hope the trip to the pumpkin patch is fun!!!

Anonymous said...

I hope you had some good sleep. I am praying for you and for your miracles. I think your miracles are right there. Thanks to Matt for sharing what all he shared. What a great couple you are and God is using you in ways you fail to understand or see. God is so good! Love you, Jonah!
Jennifer in Southeast, NC

Erin Edwards said...

We are sure thinking about you! Let me know if there is anything I can do.

We will be up there Tuesday for some bloodwork (if ya'll use Coban, Tractor Supply has Vetwrap that is made by 3M too & is exactly the same for MUCH cheaper) & a visit to our favorite ENT:) Does Dr. K have any advice Re: feeding right now?

Jessica said...

Praying that Jonah starts eating more! I hope that you guys get some answers at his appointment.

You'll be in my thoughts and prayers!

-Jessica

Hen Jen said...

praying for you!

Leah said...

Honey....please don't beat yourself up over not going to church. God won't love/bless you any more or less if you don't go. He knows your heart and I don't think it matters to Him one bit. It's not like you are out doing horrible things. You are taking care of your baby...who needs extra care. And God can be found and seen in pumpkin patches!

Jennifer, Sunshine, Angel, Miss Thang, My Birdy (formerly Baby) said...

Maybe today's progress isn't as much as you had hoped for but it brings genuine joy to all in my house who have been praying for him. Several days ago he wasn't eating at all...The last couple days we have ended our days reading that Jonah has not only consumed more liquid ounces but he's eating foods as well! That already is a gift from God that is worthy of praise right along with my prayers that he will continue eating.

I will also pray for a beautiful sunny day tomorrow for you! Happy pumpkin pickin!

erin said...

yea for pumpkin patches..ya'll have fun and i pray that it is nice weather and jonah eats lots tomorrow...hang in there ya'll. it will all work out. keep looking to Him and you will be fine. prayers, hugs for jonut, and blessings from ga~erin

Jenny said...

praying for you and have a great time at the pumpkin patch! can't wait to see the pictures ;-)

Stefanie said...

I think you are amazing and strong. I wish things were easier for you but God obviously chose you to love Jonah with all your heart for a reason.I must say from what I can tell he couldn't be luckier!It is an absolute pleasure to be (however small) a part of it

Mimmy said...

You are all due a humonguous miracle of some nature. Even one of those big washer and dryer sets I saw given on another blog couldn't but complete healing for Jonah is the most splendiferous miracle in the world.

Keeping you in our prayers and having a special prayer just for Wednesday.

God Bless,
Mimmy

Sandy said...

Patrice,
I hope you and your family enjoy the Pumpkin Patch. You are so cool . . .you seem to always know how to close out each writing with he just the right statement!

Continuing to Pray.

Maryellen said...

Praying for that miracle right along with you. Excited to see what the Lord will do. I can see Jonah just becoming a chubby little toddler . . . he is so adorable with those amazing eyes. He is on my heart and mind each day. We have your magnet on our refrigerator and my hubby and I see it and send up a prayer for Jonah everytime we go to the refrigerator - which is too much hah Blessings . . .

NickNonna said...

I hope you are enjoying the pumpkin patch today!

Laura A said...

AMEN, Patrice!! Am praying for that big ol' miracle as well. And am also praying for wisdom for you, Matt and the GI doc on Wednesday.

Hope the pumpkin patch was lots of fun - can't wait to see pics of your sweet little pumpkin amidst all the veggie ones!

Love from TX!
Laura

Anonymous said...

Hope you made it to the Pumpkin Patch today!!PRAYING,PRAYING,PRAYING.
For Healing.
LOVE TO YOU ALL
Gina ( GEE GEE )

unzen said...

Have a good time at pumpkin patch. I know surgery for an EB child is very scary but you are right on he needs about food to heal and be healthy. I hope if he gets a G Tube you will have one less thing to worry about after it is placed as you have enought to worry about. being a parent is hard and you are doing a great job. I hope the weather is nice for you. Will be praying for you this week.
unzens6-animals.blogspot.com

queenmari said...

Have a wonderful and exciing time at the pumpkin patch making famile memories with sweet Jonah.

Keeping Jonah in our prayers and praying that his eating improves. Improves. Improves.


Blessings, Mari

Anonymous said...

Hi! Love reading your blog! You are always in my prayers. I wanted to share with you a blog of another baby with EB someone had shared with me. Her name is Bella and she recently got a G Tube. Hope this helps!
http://careforanabella.blogspot.com/

Shari said...

Patrice: I know eating can be an issue with kids that have EB, but can you give him an appetite stimulant like Periactin so he feels more hungry and will eat? Just a thought and trying to help. Praying and have fun at the pumpkin patch.