Monday, January 4, 2010

have to think of a title fast so i can go to bed

Jonah seems to finally be back to normal after being a grumpy, grumpy baby from Thursday afternoon to Saturday night. He fussed pretty much constantly all day Friday and Saturday, and Friday and Saturday nights were a nightmare. Really, I felt like it was a bad dream. We couldn't alternate nights. We had to alternate times getting up, because that kind of sleep deprivation is too much to put on just one person. But last night he only got up once and for only about twenty minutes, so that was no big deal. Shwoo. That was a butt-whoopin'.

This was one of the two times he actually smiled on Saturday.


This was the other.



This is Jonah's newest face. I have no idea what it means. He's definitely in the "I have very strong opinions but no words to express them" phase. It's cute but often frustrating. We've taken to calling him Tude. Fitting, dontcha think?


This would be about the time I was yelling, "Jonah, don't rub your face!" A phrase I say at least twenty times a day.


His face is looking better than this today, although the blister under his left eye is growing and getting worse. That bad place on his forehead from the rolling over incident is much better.


He had his second RSV shot today. He has to get one every 30-32 days until April, I think. This crazy shot costs like $1,400, but after some hard work by our Pediatrician's office, they got our insurance to cover it. I'm thankful he has such a caring medical staff who will work so hard for him.
On Wednesday morning we have to go to the hospital for a barium swallow. I think his GI doctor wants to make sure there's nothing more going on than just acid reflux. And he also wants to make sure that all this throwing up Jonah does is not causing throat strictures. I'm a little nervous about it. We can't feed Jonah after midnight, and we'll have to get him up early to get dressing change done before our 9:15 appointment. We are going to have one tired, hungry boy on our hands. Plus, I'm concerned he won't take the barium by bottle, and they'll have to put an NG tube down. And I'm stressing about the x-rays because we'll have to hold him down pretty tightly. I just don't want to hurt him. I'm not taking any bandages off, so I hope they don't need me to. Because I most definitely won't. I'm just sayin'.
I know all this worry doesn't help anything. I think it's just that ANY medical procedure with Jonah is scary, no matter how minor. I just don't know what to expect, and EB seems to complicate everything.
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On another note, I am so excited about Jonah's EB Auction for DebRA. Katie and my other two friends, Lauren and Leigh, are working so hard. We're already getting lots of great stuff donated (THANK YOU!), and I think we're just getting started. There is going to be a Target Gift Card giveaway for helping get the word out, but I'm not really sure how that's going to work yet, so for now, if you tell people about it and spread the word, it'll just be out of the goodness of your heart. So thanks, in advance.
To all my EB Peeps: Katie would like to raise lots of awareness (along with money) with this auction, and we would love it if you could write your story to share on the auction blog (and here too, probably) in the days leading up to the auction. It would be awesome if you could include a photo too. Could you send it to the auction email? jonahsebauction (at) gmail (dot) com.
Adrienne, Courtney, Katie, Meg, MaryBeth, Barbara... and any other EB parents that still read the blog - we'd love to share your stories. EB goes so far beyond just Jonah, and we want to make sure we make that very clear. Love you all so much. Thanks!

Speaking of my EB Peeps, please be in prayer for Samantha tonight. She's back in the hospital with a dangerous virus. They think they've caught it in time, but because she's considered "highly contagious," they've put her on the Infectious Disease Floor. You can imagine how scary that is considering her immune system is still very compromised from her BMT. You can visit her CaringBridge Site here.
As always, thank you so much for being in prayer for all the EB kids (and parents!) out there.

23 comments:

Jennifer said...

I LOVE the picture of Jonah's pouty lip! :) Glad to hear he is feeling better and sleeping better. I'll be be praying for you guys on Wednesday!

Kelsey said...

I am glad that you had a better night last night with Jonah, I can't imagine how exhausted you must be. Hang in there! You are such a good mom to Jonah, he is one lucky boy! Good luck at the doctors on Wed, I will be thinking of you guys.

Laura A said...

Hi Patrice - hope you get more rest this evening! Praying for the swallow study to go well. We had to do one on my 3-yr old (she was almost 2 at the time), and they put it in a HUGE syringe that looked like a turkey baster. I think they flavored it orange? I was shocked, but she sucked all that stuff down! Maybe they can flavor it for sweet Jonah too. (You should ask if they have a sweet tea flavor!) :)

I'm really excited about the auction - what a terrific idea!

Caroline will be glad to see these pics - she was asking about Jonah this afternoon. Can't wait to show her! Have a great Tuesday!

Love,
Laura

lifelaughsandlove said...

Will be praying for some peace for you now as you wait for the exam on Wednesday, and for a very undramatic visit with the doctor.

Love the new face Jonah is making. I love this age. They are so expressive, but can't talk back (I know the whining and crying is bad, but seriously hearing my sassy 3 year old makes me thankful that her brother hasn't learned how to talk back yet!).

Anyway, praying for you and all of the other EB families out there. Can't wait for the auction!

~Amy

thorney said...

I'm glad to hear that Jonah had a better night last night, giving you and Matt a much needed sleep time too.

5 years ago I had a stricture. You are so right, as I can only imagine how EB just adds to the discomfort of it all. I will keep you in prayers that all is well on Wednesday for Jonah.

Jonah's new facial expression is pretty darn precious. He is such a cute little guy whether he be laughing and smiling or giving you the "Figure it out NOW" look.

--Mari

brandie said...

ahh i love his new look! so cute! and yay for his crabby's bein kicked to the curb :)

Jennifer said...

Glad you all had some good sleep. Praying for a safe and effective procedure today (or is it Wednesday.....). I am thinking of you all and know that God has His hand squarely over Jonah and his precious family. Jennifer in Southeast NC

Janel Waters said...

I will definately be praying that he drinks the barium - I think that will be the hardest part of the test - but maybe he will be hungry enough to eat it!

SERIOUSLY - this is the easiest test I have ever had done (besides the bone density test). You will not have to take his bandages off and you probably won't have to hold him down much at all.

Kenzie had to have one down when she was about Jonah's age - it really is no big deal (other than getting the barium in them).

Hope it all goes well and hope you get some answers!

Love and Prayers!
Janel

WendyBee said...

Will be in prayer tomorrow a.m. for the barium test, not just for getting it done, but also about the result.
You and Matt are the most perfect parents Jonah could have. Never doubt that.
WendyBee

Joe Murray said...

I would love to help with the auction in any way possible. Just let me know how I can best help.

Katie (signed in under my husbands name since I'm stuck in the 90's and don't have gmail)

Wanda Wilkinson said...

Love that lip poked out (reminds me of the one when he was a little baby). Glad to hear he gave you a night with more rest...

Praying for his barium swallow tomorrow..maybe it will be to his taste buds, especially since he will be hungry & hopefully they will flavor it.

Just a little longer & HE will be telling you what those facial expressions mean...sometimes it is better to guess.

Love & prayers

Claire said...

Oh bless the Tude! What an expression!

Cxx

Lisa said...
This comment has been removed by the author.
Lisa said...

I posted a comment, but wanted to make a simple change and lost it all! YIKES!!

At any rate, I have Jonah's button on my blog and will be praying for your little guy's healing. God is able!

Hugs,
Lisa

Julia said...

We had a barium swallow for Perron when he was 7 weeks old. The GI doctor and the pediatric radiologist did not warn us about a potential issue that results from this, so I wanted to give you a heads up. The barium basically turned into chalk in Perron's GI track and caused MAJOR constipation...like send us to the ER constipation because they thought he needed an enema. No one warned us that this could happen so we TOTALLY freaked out (as did Perron when he was trying to pass it). He literally pooped big,hard, white pieces of chalk.

He was okay and ended up being able to pass them all by himself, but it was VERY scary at first because we didn't know what was going on. I think if we had been given a heads up that this was a possibility it wouldn't have been nearly as big of a deal.

Hope all goes well and the swallow shows no damage.

Angel said...

Glad you slept better. We were reading Matthew 4 today and discussing with the boys why the apostles followed Jesus so easily. I said I wouldn't have, most likely, but I would have been with the crowds that were following for healing. Jonathan quickly answered, "I would take Jonah straight to Jesus if he were here." You are all three still in our hearts and thoughts. God Bless.

Elizabeth Mahlou said...

How nice to see the smiles, involvement, activity. Jonah's quite a little character!

All the best with the medical appointment!

Pam, mom, honey, said...

i remember those shots, we had/have a great pulminologist and we recieved them for three winters. i was so grateful. i think it is funny how last year insurance did not pay for them and my baby girl (3 year old) spent 15 days in the hospital. I am sure they saved money though, haha

mrs_muffins said...

I just found your blog. Jonah is so handsome and seeing him smile lifted my heart. I will keep your family in my thoughts, always.
xx

the-mommy-person said...

I love Jonah on your pooch. Cuteness.

Jackie said...

I am keeping your family in my prayers today. I pray that all will be well with the testing process and that the results are that Jonah has escaped injury from the vomiting.

LisaL said...

Thinking about you!

Laura said...

Great pouty face! Praying for you today...you are amazing.