Thursday, June 4, 2009

baby bolte

Just a quick note...

I have been to Hope's site, and I've left a comment for Kristy. I wasn't going to leave a comment just yet until I knew more what they were dealing with (didn't want to scare them or make them jump to any conclusions). However, when I went and saw how many of you had commented about Jonah, I did leave her a comment. I'll be glad to be there for her however I can, but in the meantime I'm praying that it's not EB or if it is, that's it's a less severe subtype.

Thanks for letting me know. I actually found Waiting For Happy soon after I lost Gabe (I don't remember how), but hadn't been back in a long while (lost it somehow).

Please pray with me for baby Hope.

15 comments:

Susan said...

Oh great! I sent you an email about this, too. I'm sure you didn't get but a million of them. Have a great evening! I'll be praying with you, that it's not EB...

In the meantime, I'll be praying for no new blisters for that sweet baby boy of yours. Take care!

happy gram said...

amazing, isn't it, the way the 'evil' internet connects people with prayer warriors! a couple of years ago i was directed to a blog by a friend - and was quickly linked to others - of mothers who lost babies due to Trisomy18. one day i commented to myself that it was strange that i was so attached to these women. why was i reading their blogs? one month later, my daughter had a placenta abruption and her baby was born still at 32 weeks. several of these women have become her CLOSE friends and they have shared the deepest parts of their life journeys. kristy is one of the moms; i know if kristy and howard are facing EB, you and she will become friends(and after reading your blog, i think you two are very much alike!) God bless you and your sweet, beautiful jonah! he is absolutely a beautiful baby! love, jan (now that i think about it, i think you were listed on my daughter's "blogroll" when you lost Gabe) )wow-my word verification below is slysa - my daughter's name: alyssa)

Anonymous said...

What beach will you be visiting? If you're coming to the Outer Banks you just might see my magnet!

April Swarthout said...

Jonah is the first person I thought about when I read her post. I am glad you made a comment. also praying that it is not EB... Praying for Jonah!!

April

Anonymous said...

Hi,
This was in a comment on another page, and I remember you tlaking about finding irritation-ree clothing, and about bandaging and feedings, so I thought I would put it here--maybe you have already seen it anyway.

Hope precious Jonah is doing great today!

http://www.garrettshouse.org/guide

Megan @ Hold it Up to the Light said...

I went to the site last night (and had actually been there before, like you). Praying for this sweet baby and family. I know that God is in all of it though. He is near!

chinamoon1420 said...

I will add her to my prayer list. Thank you for mentioning her.

Marie said...

I've just been reading their blog...wow what a story, I had to go back to the beginning and read it all. Gosh so many people mentioned Jonah, he's quite the well known celebrity now isn't he? See there you go, EB was such an unknown disease and now Jonah has singlehandedly brought so much awareness to it!

Anonymous said...

Sweet Jonah at work...bringing EB to the blog world in the hopes of educating others...now thats an important job for that little miracle boy of yours.

Sharon said...

I didn't read the comments on Hope's site...I wish I had because I just sent them an email about your site. I know if it were me, I would truly appreciate someone reaching out to me like you are reaching out to them. God Bless You.

Rob and Amy said...

Awesome Patrice!!! I did send Kristy a facebook message with Jonah's site, and she did respond that she knew of your site, and was so thankful that I sent her the link....and right now they are just not too sure about an EB diagnosis. However, they still haven't ruled it out, either :)

Thanks Patrice =)

Drama Queens said...

Hey, I was just reading your prevacid dilemma-all 3 of my kiddos had acid reflux and with the 2 that were on prevacid I would just split their pill (or half of a pill) in half and stick it in their cheek--yes even at 6 weeks of age. I talked w/my doc about it and she said just to watch them and I am a nurse so I felt fine w/it, but of course make sure it's good w/your doc.

Anonymous said...

I saw TWO cars with Jonah stickers yesterday! Amazing how much more aware our community is of EB because of him!

Michelle said...

as soon as i read that entry (i've been reading their blog for quite awhile) my heart sank. i thought there was NO WAY another person's baby would be born with it so soon after Jonah since - as you pointed out - i'd never even heard of it.

i thought i'd be alone in commenting about EB on her blog, but sadly, i wasn't... and even more sadly, we were right it seems.

praying for them & you...

- michelle

Sonja said...

Patrice...I can't get onto the Waiting for Happy site. The blog banner is there and sidebars, but no entries. Could you let me know how Hope is doing? Did they move their blog? Or make it private? Or is it just trouble on my end?

Thanks!