update - monday, april 6th

Wow, you guys are amazing. I think I was thinking, "Pity, Party of 1," but I should have known I wasn't alone. Thank you for loving us. I can't understand why you do, but it sure means so much to us.

I guess I should make it more clear that I DO have help. Matt's mom is still here, and my mom is helping a lot too (she's local so isn't staying here... although she did nights for me last week - woo-woo - because they had spring break). Debbie will be here through the rest of the week, and next week my brother will be coming for a day, my mom will take off to be with us, and Debbie will be back at the end of the week. We are SURROUNDED by love and support... just wanted to make that clear. But sometimes you still feel alone, even if it is irrational. Not that I would EVER be irrational. Totally NOT my style.

Jonah's dressing change went much better tonight. He only got really upset at the very end when we were bathing and rewrapping his torso. He was ready to be all done. The home health care nurse (who also happens to be Jeannie, my best friend Kathryn's mom) weighed Jonah tonight, and he's up to 8 lbs 10 oz, so that's very good news. I did call the pediatrician today, and she has switched him to Prevacid. I'll give him his first dose with his next feeding. The appointment with the ENT is still on Thursday, and I'll only move it up if the Prevacid doesn't seem to help... although I figure it may take a couple days to see a difference. I am happy about the weight gain, but it still bothers me to see Jonah in so much pain when he's eating. The doctor said everything I'm describing sounds like typical reflux, but that he's probably just in more pain because it's likely he has some blisters in his throat. Poor thing. But if his throat is like the rest of his body, they will come and they will go. He'll heal quickly.

Matt wants me to post about specifics of the dressing change, so you'll know exactly what you're praying for, but I'm too tired tonight to go into all of that. I'll try to give some more details soon.

As far as your comments (the ones I've had a chance to read so far...) -

Jonah is on Magic Mouthwash, although his does not have lidocaine because we give it by syringe, and it's something he swallows. It's a combination of Bendryl, Maalox, and something else I can't remember... I just remember specifically that they said it doesn't have lidocaine.

We can't move dressing changes to the morning (as much as I would LOVE to get it over with), because Matt has to work, and I need his help. Also, because he's on the pain meds, we want him to be on the sleep at night, be awake during the day schedule. If we gave him the meds during the day, he'd be zonked all day, wouldn't eat very well, and would probably be up even more at night.

We DO have to keep him wrapped, even though his arms and legs are looking better. He's still getting new blisters, and you never know when or why they're going to pop up. (He had a new one on his arm, two new ones on his belly, and two new ones on his feet tonight). If he was uncovered, he would hit his arms and legs against things and against himself, and he would get blisters everywhere. The SLIGHTEST friction will cause a new blister.

I don't think he has an infection. His temperature has been good, and he doesn't seem lethargic. He's more irritable because he's starving and tired. And he's tired because he's hungry and waking up to eat a lot. (That's my guess anyway.)

That's all I can remember as far as comments at this point, but the last time I read them, there were only 78. I have some catching up to do. Sheesh.

Here is our family picture. I didn't want to post a smiling picture earlier today (you know, since I was in such a great mood and all), but for now, I'm done feeling sorry for myself. (Don't ask at 3 am.) I have lots more pictures from Gabe's spot I'd like to share, but again, too tired tonight. I need to sleep while I can.

Thanks again for praying for us. Can't you tell it's working already? Even having only read 78 of the comments, I feel so lifted up, loved, and supported. What an amazing thing to be part of the Body of Christ - to be connected by only one thing - the blood of Jesus. You know, just that one little thing. :) Through YOU, God shows me that He's not far off. He's next door, across the country, across the world... He's so close. Thank you for reminding me.

My sweet boys.