our sunday

We had a good day today. We tried going to church again with about the same result. He fell asleep in Sunday School, and stayed asleep for about two songs in worship. They have given us access to the baptismal changing room to take care of Jonah, so we don't have to go into the nursery with so many germs. It was so great, because we fed and changed him there (peed right through his cute outfit), but we could hear the service the whole time over the speaker. I'm glad we have a place we can go... much easier than feeding and changing in the car.

We then went to a friend's house for lunch. Jonah did okay. I'd probably give him a 6 out of 10. He cried through lunch, so we took turns holding him in the living room under the fan. He then had a poopy diaper, but luckily it didn't get on his bandages, so I didn't have to do an away-from-home dressing change. Let me just say that judging by what I packed to go to lunch at a friend's (including his baby swing), we're going to need to rent a bus to go to the beach. RIDICULOUS.

Dressing change went well. Tonight was the first time doing it in the basement. Jonah didn't seem to notice a change, and everything went smoothly. He even fell asleep while we dressed his arms. I've started wrapping his head to protect his forehead. I may not do it all the time, but I at least want to give it a chance to heal up.

Jonah just ate FIVE OUNCES (I usually can't get him to eat four), and he's acting like he still wants more. I'm cutting him off though. I don't want him to throw it all up. This last feeding went really well, but we're still struggling most of the time. I'm thinking about switching him to a liquid form of Prevacid, because it's just so hard to tell how much he's really getting. He likes to spit it out when I give the granule water to him by syringe. I need something I can put in his bottle, so he doesn't notice it.

Sorry this was so boring. I'm extremely tired. My allergies have been kicking my tail today, and I can't really take anything (except Benadryl and that completely knocks me out) since I'm breast-feeding. I'm hoping Jonah will cooperate and maybe I can get in bed before midnight.

the big reveal

The basement is finished! So I guess this post is just one big, HUGE thank you to everyone who made it happen for us. Thank you, Pinedale, for being so willing to fund this beautiful room for our family, and most especially for Jonah.

Thank you Shoe, Doug, Bill, Jeff, Stevie, Brad, Dad, and any others I didn't know about for all the hard work over the course of a month to convert it from an ugly, unfinished storage area into what it is now.

Thank you Gina, Melinda, and Caroline for decorating it so beautifully.

And thank you to our Sunday School class for collecting money to help out, for the surprise cookout tonight, and for being here for The Big Reveal. You guys just don't know how much it lifted me to have you all here. Come back soon!

Matt and I knew there was a reason we were brought back to Winston after leaving Greenville. We didn't really know what it was at the time, but it is so very, very clear to us now. Brenner Children's Hospital saved Jonah's life, and our Church family has just been a huge fortress of strength around us through it all - the loss of Gabe and the birth and life of beautiful Jonah. We cannot express how truly grateful we are, and what you all mean to us.

We're forever in your debt, and all we can really promise is that we'll try to someday pass on the love, support, and generosity to someone else - so that one day we can be that fortress to others who may have to walk a similar road.

Thank you so, so much.

And now the fun part!

Coming down the stairs for our first look.

Me (and Gina!) trying not to cry.

Our first look.

Our beautiful basement.

The unstoppable visionary, Gina. Interior Decorator Extraordinaire.

Jonah's wall. (My absolute FAVORITE part of the room.)

The stairs before and after.

The counter/dressing change area before and after.

The closet/seating area before and after.

The closet/bed area before and after.

And the sweet little boy who God is using in a mighty, mighty way. Even though it may seem it's all for him, we know that it's really all for HIM.

Thank you, Father, for your grace and mercy in blessing us with sweet Jonah. We wouldn't trade him for the world, and we are just so thankful for each and every day we are blessed to spend with him. Thank you for using him and using his story to bring glory to your name. We are beyond speechless at what you are doing through his life. And thank you, God, for our support network - our family, friends, church family, and our blogging friends - thank you for surrounding us in our time of need. Thank you for the body of Christ. Please help us be the hands and feet of Jesus to others, just as others have been your hands and feet to us. Thank you for carrying us. Please grant us the opportunity someday to shoulder someone else's load.

We always thank God for all of you, mentioning you in our prayers. We continually remember before our God and Father your work produced by faith, your labor prompted by love, and your endurance inspired by hope in our Lord Jesus Christ.

the mid-night musings of a milk cow

Pediatrician Update: Jonah's weight is in the 10th percentile, but Dr. B said he's gained excellent weight from last month to this month. She's very pleased. Something about tickled pink or happy as punch or something. Anyway, it was good. We're going to try giving him an extra dose of Prevacid each day. He was taking half of a 15 mg solutab once a day (so I was just throwing the other half out). Now, I'll half the pill before dissolving it, so that he can have half in the morning and half at night... so he's getting the whole 15 mg, not 7.5. I'm also not allowed to eat or drink any dairy this week and can only use my freshly expressed milk instead of my stock pile to see if he may be lactose intolerant (a common problem with EB kids). We're also going to try feeding him every two and a half hours (instead of three), hoping that he can eat less amounts but more frequently, and that will make him more comfortable. She also checked his mouth and says he has some blistering at the back of his mouth/throat, so that may also be causing him some issues. Instinct tells me it's mostly Reflux after reading so many comments describing the same type of thing. I didn't know there was this "silent" kind that didn't involve lots of spitting up (which is usually not an issue for him). Hopefully the increased Prevacid will help. But then, how will we know if it's the Prevacid helping or the no dairy? Oh man, will I ever get to eat cheese again? Ay, mi queso, como te adoro.
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So it's 4:30 in the morning, and everyone in my house is asleep, even Jonah. Although he may be learning to sleep through the night (last night he only woke up once... at 4:45), my chest hasn't quite gotten the idea. I feel like a cow... a cow that is very grateful that her son is learning to sleep more, but a cow none the less. (Sorry, boys, for TMI. This is a girly blog... not a boyly one - as my niece and nephews like to say).

Today (yesterday really) was a GREAT day. Jonah, Granny, and I went to Target, through the Chick-Fil-A drive thru (with a feeding in the parking lot), Kohls, and finally Harris Teeter. Jonah was awesome except for being a little fussy and having to be carried in the grocery store. I'm so happy when I can get out with him. Any bit of normalcy immensely raises my spirits. And he's just getting to be so fun these days. I think I'm going to like three months. As long as he had dry britches and a full belly, he was content... lots of smiling and cooing and good play time. I'm starting to enjoy him so much more, and it makes the hard stuff SO much easier to deal with. He actually laughed out loud at Matt two nights ago, but I missed it. I heard it from across the room, but was too busy trying to get the camera turned on, I totally missed it. It was the sweetest sound and the first time he's laughed as far as I know.

Tomorrow (today really), he has a doctor's appointment and then the nutritionist is coming at 2:00. I'm excited to hear what she has to say. Feeding Jonah is a struggle. He's eating enough (for the most part) and definitely gaining weight, but the actual act of eating/feeding is so hard. He'll take the first ounce peacefully, smoothly, and quickly, but then the last two to three ounces is like pulling teeth. He's hungry and rooting around, but he'll push the bottle out of his mouth, arch his back, thrash around, and cry through the rest. Either that or he completely falls asleep. I have no idea why he gets through the first ounce just fine, and then it all goes to pot. This is the primary thing I want to bring up with the pediatrician. It shouldn't be this hard. For him or for us. Frustrating. Plus, it takes him an hour to eat usually, which not only takes up a ton of time, but they say anything over 30 minutes and he's actually burning calories. But what do you do when your kid's still hungry? I'm not going cut him off at the 30 minute mark. Anyway, I'll be glad to talk to both the doctor and the nutritionist about it. I moved up to the level two nipples with his Dr. Brown bottles, hoping that it would help him not get so tired/frustrated. And, my thought process was that if he's only going to give me a good 20 minutes, I want to get the most out of them. Has anybody else dealt with this same thing? It's so hard for me to know what are EB problems versus "normal" baby problems. (I don't know why I feel the need to put that word in quotation marks).

Well, I'm done milking myself now, so back to bed.

Moo. (Er, I mean goodnight)

by the grace of God

Hey everybody! Today I turn three months old.

Mommy thinks I look kind of fat in this picture, but says I'm not quite this chunky in person. I weigh 11 lbs 10 oz without my bandages or anything. Mommy says that's really good and that she's so proud of me for eating like a big boy and gaining weight. She says it will help protect me from infection, and she says it's really important that I stay well-nourished. She says I'm doing my part. I'm fussy a lot of the time, but Mommy thinks it's because I must itch a lot, and that it's got to be hard on me coming off Morphine, a drug I've been on my whole life. We all hope to be rid of it for good in the next two weeks. I have this really cute cry, and it really sounds like I'm saying "Whaaa," and I pooch my bottom lip out and do a chin quiver. It works like a charm. I especially like to do it to my Nana. I somehow inherently know that it's her job to spoil me rotten. I'm very smart. When I'm really inconsolable, Daddy sings the Star Wars theme song, and I ALWAYS stop crying. Mommy thinks it's really weird, but she's thankful there's something that will shut me up.

When I am in a good mood, I smile a lot and use my whole body to express myself. I coo a lot at anyone who makes funny faces or noises, but I will follow Mommy and Daddy around the room with my eyes. I think they're the best. I really like sitting up on someone's chest and holding my head up really strong all by myself so I can see the world. I don't like having to lie back to take my bottle. I want to be looking around all the time. I will scream a lot if I don't get my way. They tell me I might have Mommy's strong will. Mommy is okay with it.

I don't like tummy time, but haven't given it much of a chance, so Mommy says this is something we're going to need to work on. My favorite thing is to lie on the changing table and look around. I love it there, because I get to stretch and kick my legs and arms. Except for the occasional blisters on my feet, legs, and upper arms, I'm in pretty good shape except for my face. I love, love, love to rub my cheeks, eyes, and forehead. You should see me in the morning when they release me from the torture device they call the "Miracle Blanket." I take one big, huge stretch and then go to work on my face, making up for a night spent in a straight jacket. DRIVES. MOM. CRAZY. I think that's part of the reason I like it so much.

I'm just beginning to discover the joys of peek-a-boo. Why has no one ever told me about this? Suh-weet.

I dig hanging out in my swing, but not for too long. I much prefer being held. My favorite part about the swing is watching the lights, and I could just stare at them forever. I really like to ride in the car. I also LOVE the ceiling fan in the living room and will try to bend my body backwards to see it if you are holding me and start walking away. If I do that, the big people will walk back over to the fan so I can watch it. I pretty much call the shots around here. (Muah-ha-ha!)

Like my cute outfit? I only really started wearing "real" clothes yesterday. Mommy is so excited she about pees her pants when she dresses me. So then I pee my pants instead, and she has to take that outfit right back off. But man, for that thirty seconds, she's totally pumped.


This is my blue vibrating chair my cousins Asher and Ainsley let me have. Mommy keeps hoping I will like it, but so far I'm pretty resistant. I will sit in it, however...

if I can do this...

I LOVE Baby Einstein. Baby Beethoven is my favorite, although I also like Baby Mozart. Mommy thinks classical music is pretty boring, but she's glad I like it. She's wondering when they'll come out with Baby Led Zeppelin. She thinks that would rock the house.

THIS is my favorite way to sleep:

1. Hold me. Seriously. Hold me. NOW. I SAID, "HOLD ME, DANG IT."

Now then.

2. Somehow let me get all funny and twisted over on my side.

3. Let me stretch my neck and head waaaaay back like this.

4. Let the snoring commence.

Mommy says that today is a big day for me. She says that I am only here today because God has protected me and because of this thing called prayer. I don't really understand it all, but she says someday I'll know how loved I am, and I'll understand how the whole world prayed for me. She says that God made Gabriel to be an angel, but He sent out Jonah with a message to the world. She says I'm going to have a big story to tell, and that she hopes I'll always give God the glory for my amazing journey, and that I will use it to tell other people about Jesus.

She says to tell you all thank you. From the bottom of our hearts. From the depths of our souls.

I'm here because my God is healing me, sustaining me, giving me breath. I'm here because you prayed... because you are still praying. I'm here because you love me. A stranger. A baby you haven't even met.

I'm here by the grace of God. Praise HIS name forever and forever. Hallelujah!

photos of jonah

Holding bottle all by self...

Our sorry attempt at tummy time. It didn't last very long. He wasn't a fan.

Jonah in a onsie! Real clothes! Hanna Andersson has clothes (although expensive) with flat-locked seams on the inside - so no big seam bunches under the arms. I'm so excited! So far, no blisters in his armpits! But today was our first try, so I'm not sure they would've popped up yet. If it works out, I will be one of their biggest customers, I'm pretty sure. I'm gonna be spending way more money on his clothes than I do on mine. After all, if I can't get it at Target, then I obviously don't need it.

jonah's new girlfriend

My best friend from college, Katie, and her husband Nathan (a friend I've known since high school - it may or may not have been the connection of ME that got them together... I couldn't say) just had their second girl on Friday. And I'm officially (along with Katie's full knowledge and support) dubbing little Quinn Catherine Jonah's now and forever (???) girlfriend.

They've just moved to Holly Springs (the triangle area) from Greenville, so they are just THAT much closer. We have many a plan to meet up in Chapel Hill or Burlington for visits. And someday soon, when I get brave, maybe Jonah and I can go see Katie, Rory, and Quinn for a day trip!? You know... someday... when I get brave.

Congratulations Katie and Nathan! She's beautiful! Can't wait to meet her soon. We miss you guys so much.

jonah on church

I'll see your request for photos, Wanda, and I'll raise you a cute video. How about them apples?

Jonah's opinions on going to church this morning...

my "nice list"

The OT appt went well today. Our OT is super wonderful, and I'm so thankful we have her in our lives. A lot of today was paper work and discussing goals, possible obstacles etc., but I did unwrap one of his hands so she could take a look. She agrees that it would be good to begin leaving them unwrapped sometime in the next few weeks. However, she says she was happy with his hand, finger, and wrist movement. His thumbs being pulled in and the tops of his fingers being curved are not irreparable, she said. One thing she wants me to start doing right away (if I need a baby step before completely unwrapping his fingers) is to start wrapping his thumb separately, cutting a little hole in the tubifast, letting his thumb be outside the fist (but still wrapped). That will encourage him to keep his hand open some, and will promote his learning to push up on his hands (one of the things he should be working on). We also discussed my fear/obstacles with tummy time, and she suggested that we begin doing it on a boppy first. That sounds like a great idea! As far as the videos you guys are sending me of wrapping all his fingers separately, yes, they are great. But there is NO WAY Jonah will keep his hand open enough long enough or be patient enough to let me do that. One of those videos is like a 7-year-old. Jonah's hands are way too tiny and way too clamped into a fist to be able to do that... although I'd love to and may do that when his fingers are a little bigger and he's a little less wiggly. Thanks for the suggestions though!
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Now to something different...

There are some days when you just need to uplift and encourage someone. And some days that person you need to uplift is... well, yourself.

When I was a sophomore in high school, my English teacher had us write down each person's name in the class (except our own) on a sheet of paper. Then, beside each person, she had us write one compliment or one thing we liked about the person. She encouraged us to be creative and thoughtful about what we were writing.

She then typed all of the compliments the other students gave us on one small strip of paper for us to keep in our wallets. I STILL have mine (11 years later) and pulled it out today to give myself a little boost.

Here is what mine says:

Patrice - brilliant orator for students' rights with cute hair clips and maroon pants, strong and independent, one of the strongest people I know, mature, beautiful, my best friend (that was Kathryn's), upstart, very funny and nice, has a great smile, awesome complainer, great listener, good friend, shows Christ in her life in all that she does, the voice of the class, not afraid to ask the teacher for a favor that everyone else silently wants, confident, caring, brings life to the class, keeps me in line, always friendly to all, absolutely charming, makes me laugh, good breakfast person, great determination, sticks up for what she believes in, good listener, I love your laugh, strong in your views, won't back down, pretty nose, easy to get along with

See? Don't you feel better about me already?

Maybe a few of these need explanation -

- As you can see, there is a recurring theme of standing up for rights, awesome complaining, asking for favors everybody else secretly wants, not backing down, the voice of the class etc. This translates to: Must have annoyed the crap out of my teachers. Because of my good grades and strong relationships with my teachers, I did tend to speak up for us when we were overworked or felt there was an injustice. It was usually well received, but having been a teacher myself, I would have hated me. I apologize to any of my high school teachers who may be reading this... especially Ms. Hottinger and Mr. Cochrane... you guys were just too nice for your own good. I couldn't help it. It was the Roseanne in me.

- Maroon pants: They were really cute pants, if I do say so myself. I got them at a thrift store and they were this maroon velvet material. They made my tooshy (I hope tooshy really means tooshy in Australia and not something bad like fanny) look good too. And I didn't have much of a tooshy at the time, so that's saying a lot. I don't have them anymore. Believe me, they would no longer look attractive on me. It's funny how after you have a couple kids, your body seems to redistribute itself.

- Good breakfast person: This one was written by my friend Justin Vernon. EVERY day he would ask me what I had for breakfast, because it was always something really disgusting excellent like pizza, steak, spaghetti, vegetable soup etc. I would pretend that I eat normal, grown up foods now for breakfast, but that would be a lie. Nothing has changed. This morning I ate this chicken enchilada type casserole. Yesterday it was chicken and rice soup. The day before that it was Hershey's Kisses. Don't judge me. I am what I am.
(And apparently, you guys don't care what I had for lunch, but do have to care what I had for breakfast. So, there!)

Anyway, I was thinking about this list today and know that many of you are either teachers or work with the youth at your churches. I think this is a GREAT idea to unite your kids, and teach them to build each other up rather than tear each other down (which tends to be their instinct sometimes). Give it a shot! I'd love to hear your feedback on how it worked. Like I said, I STILL have mine, so obviously it made an impact on me. Kathryn and Jamie, do you guys still have yours?

Matt's parents and Kim will be here this weekend, and then Peyton, Amy, and the kids are visiting on Monday. Woo-hoo!

The basement is finished, although still empty. Gina says she is going to do an Extreme Home Makeover down there and decorate it for me. I told her she could do whatever she wants as long as I get to scream, "MOVE THAT BUS!" at the end. I'll take pictures when it's all done. I didn't take before pictures, but I think one of the men from church who worked on it took some, so I'm going to see if he can email me those, so you have a comparison. It looks great, and we'll be working on getting things ready to start dressing changes down there over the weekend.

Don't know how much time I'll have to post with all our company this weekend, so if I don't "see" you, have a great holiday weekend. Enjoy the pool!

a smorgasbord

Warning: All I have in my head as I begin to type this post are weird, random snippets. Please do not expect a cohesive post. If you came here with that expectation, stop reading now. Seriously. Stop.

Jonah Update - Jonah is doing well. He's gaining weight (they tell me he's getting fat) and his weight at last check was 11 lbs 15 oz (with bandages on). My guess is that the bandages weigh a good pound. He's smiling and cooing on a regular basis now, and I can't tell you what this does for my morale. He seems to love me the most (and daddy too, of course) which is how it's supposed to be, and that makes me happy too. For a while I felt like whenever he was awake, he cried, and that he hated me for all the crappy stuff I put him through. But nope, he seems to love me a lot, so no worries. He smells delicious, and has the sweetest little grin you've ever seen. I'm going to try to get some video here pretty soon, but you know how they'll never do their tricks when you want them to. He's getting to where he's happy most of the time unless there's an issue (tired, hungry, poopy). Speaking of poopy, he has pooped A LOT today, so I don't know what's in the breast milk that he's drinking today that's cleaning him out. That's the bad thing about pumping... you never know what you ate a month ago that's having X effect on him. But man, I wish I knew because I'd be sure to eat that again when we're having our constipation issues. We're having a better go of it as far as nose boogies are concerned in that he's not getting dried up ones in the back as much, and he's able to eat much easier. Aren't you so glad you get to hear about my son's nose boogies?

OT tomorrow - The OT comes tomorrow. I'm really nervous about it. I don't know why, except that I know he needs a lot of help with his hands (his thumbs are pulled in and the top joints of his fingers are crooked), and I'm sure the reality of it all is about to smack me in the face. Although you saw pictures of mittens in the last photos I posted, his hands were still wrapped underneath. The mittens were just there to protect his face. I feel like they are softer than the outer layer of bandaging. Anyway, after tomorrow, it will probably be time to start unwrapping his hands, and it makes me want to vomit when I think about the blisters that he's going to have. His sweet little hands are just perfect as far as his skin is concerned. But I can't wait to feel him hold my finger and touch me with his bare hand. So far he's only grasped my finger when I have an Aquaphored glove on, and usually it's in protest of me trying to wrap him. Please be in prayer for his evaluation tomorrow and our inevitable unwrapping of his hands (whenever that ends up happening). We are getting his services free through Child Development Services something something, so that's great. So far, I have just set up appts with OT and a nutritionist, although there are other services available as we need them.

Dressing Changes - We have started doing them around 5:30 every night, and it is GREAT! We do it on no pain meds, and he's totally cool with it. I mean, sometimes he gets fussy, but not because of pain... just because he's ticked to be lying on the table for over an hour. Sometimes he's the happiest during dressing change that he is all day - surrounded by people giving him attention, diggin' some Baby Einstein, lying there getting to kick his legs - he's a lot of fun. We're so happy to be getting it OUT OF THE WAY, so we can either have free time (yeah, right) or at least spend our evening doing "normal" parent stuff (feeding, changing etc). Matt and I are both less stressed and more relaxed now. It's been a life-saver.

Night time - Oh, please don't get me started. Jonah was up yesterday from 4pm to after midnight... not AT ALL interested in sleep. We tried rocking and bouncing and letting him fuss it out. All to no avail. And because he stayed up so long, we had to do a midnight feeding (that he's usually asleep for). I was SURE he would sleep through his 3:00 since he had eaten that extra feeding and hadn't slept in forever, but nope. Old Faithful was up at twelve, three, and seven. And to top it all off, he didn't go back to sleep between eight and ten like he usually does. Little stinker. I guess when you've drugged your kid to sleep for 11 weeks of their life, they really don't know how to go to sleep on their own. (Note: Jonah is not completely off of Morphine and Ativan. He should be off of them completely in 15 days if he doesn't show any signs of withdrawal. We are now giving him Morphine at 8pm and Ativan at 9pm in hopes that if they do zonk him out, they will zonk him out at bedtime, not at 7pm. I can't wait for him to be completely off. He doesn't need them now, but it's a slow process to get him off without causing him different issues.)

Sunday - Thank you for all your comments on Sunday's post. They've yet again lifted me up and renewed my spirit. I'm so thankful for this crazy blogging world - to be connected so intimately with the Body of Christ - Amazing. I hope to meet you all someday to thank you in person. But sorry, people, no cruises in our future. Heat and humidity - HELLO! Maybe we could all go to Alaska... oooohhhh, what about a cruise to Alaska? Anybody want to donate a cruise for about 500 people to Alaska? Anyone? Hello? Are you out there? Tim Duncan? Help a girl out. (Go Deacs! Go Spurs! You're way more awesome than Ginobili and so on and so forth).

A few short questions answered:
- I have help during the day (taking care of Jonah, laundry, dishes, but more than anything, emotional support - I'm not so great at being alone... never have been), and either that person stays til 7:00 to help with dressing change or someone else (my mom, Matt's mom, Kathryn etc) comes to help so person A can go home.
- We were married at Bonner Point in Bath, NC (east of little Washington). Supposedly it's where Black Beard was born and called home. It was a beautiful (but hot!) day, and I couldn't imagine a more perfect wedding. I always knew I wanted to get married outdoors, and it was the absolute PERFECT spot (and free too... it's a public park).
- Yes, we can (and do... an insane amount) kiss Jonah. I all the time give him very gentle hugs and squeezes. We usually do hold him in a blanket (to prevent accidentally rubbing him), unless it's just to pick him up to switch out blankets. A lot of times we hold him with a gel pillow behind his head to help cushion his little (seriously little - in the less than fifth percentile) head.

And finally, Happy Birthday to Gerry (Matt's dad - yesterday) and Trent (Matt's best friend - today). Thanks to both of you for being so incredibly wonderful and such a huge part of our support network. WE LOVE YOU!

That's all for now. See? I told you it would be random. Next time maybe you'll listen. You're so stubborn, always having to learn stuff the hard way. Won't you ever learn? Sheesh.

welcome to moe's

Not a whole lot to post tonight except...

Today, Matt's Aunt Patsy and I took Jonah to Moe's for the first time. Oh, for the love of Moe's. Moe's rocks the hizzouse. Wrapped up in his Miracle Blanket tonight, I was inspired. He's either my "Jonah Bag of Donuts" or my "Joey Bag of Jonuts." Can't decide which I like better. He's a cutie either way.

And tonight, after dressing change, Matt and I got brave and took him to Ham's. I know, I know... two restaurants in one day. Tenemos mucho coraje. We felt sure he would fall asleep on the way (he had been awake since 3:30 except for a 20 min cat nap... it was after 8pm), but alas, no. He stayed awake the entire time. He was fussy until we took him out of the car seat, and then he was all good - wide awake, looking around - taking in the lights and the windows and the train. It was actually a lot of fun. And I think I'm mastering the art of eating one-handed. He may or may not have gotten chip crumbs on his legs - I can't rightly say.

Anyway, he's had his before bed bottle and just now fallen asleep, so I'm hoping he'll rest well. It's pretty typical for him to wake up around 2:30 and then again at 5:30, although the night before last he woke up every hour. Two times wouldn't be so bad, except that it takes him an hour to eat... he likes to sleep as he goes.

And finally, if you are interested in cloth diapering and haven't found exactly what you're looking for (or think the price of cloth diapers is outrageous!!!), check out my friend Jen's blog. She's offering to make customized cloth diapers for about $7.50 each. She made them for her own son, Jude (also a cutie), and likes them better than the ones she purchased. She's a super great, honest, creative, very talented, wonderful Christian mom who would do a great job. Seriously, you should get in touch with her if you are in the market. Better quality for a cheaper price. It doesn't get any better.

And now I'm going to take advantage of my son's falling asleep late (see, in my head that translates to sleeping all night - can't a girl dream?). Night night.

the danger of facebook

There are reasons I don't spend much time on Facebook. I bet you think you know what they are. You are thinking...

- there are not enough hours in the day
- it's addictive
- it would keep me from blogging
- I'm way too great of a mom taking care of Jonah to engage in such frivolity

You are wrong.

The reason I stay away from Facebook is because of the quizzes. And it's not because they would take up too much of my time. No, no. It's because I find the quiz results uncannily accurate, and they reveal truths too disturbing to mention out loud. They tell you things about yourself that you only silently admit in your most secret parts, but would never, ever tell anyone. They are right on, dead accurate, truth. They pretty much shape the person you are becoming. It's really nothing more than a self-fulfilling prophecy. And they're dangerous, and I just can't submit myself to such disturbing revelations.

Patrice, WHAT are you talking about?

I'll tell you, friends. The other day I took a quiz on Facebook. Maybe you know it. It's one entitled, "Which TV mom are you?" "Oh, this is great," I thought. Just sure that I would be June Cleaver, Carol Brady, or at least Claire Huxtable. But no. Sadly, no.

Here was the description of the kind of mom I am -

You are an independent, feisty, outspoken mom. You work hard to make a good life for your family, but it's not always easy balancing work and home. You'll do anything for your kids and often tell them exactly what you think!

Doesn't sound so bad, right? WRONG.

Here is the cold, hard truth. And as much as I hate to admit, she is a woman I CAN identify with. Take out the cuss words and the crude sexual references, and I really think our parenting styles are similar. That's right, friends. The TV mom I'm most similar to is...

Wait for it...

Wait for it...

ROSEANNE




Poor, poor Jonah. But it can't be helped. Facebook has spoken. And so it shall be.

sweet jonah

one of the lows

It is always my intention to be real here - to show both sides - the downs along with the ups, the valleys along with the mountain tops. And I will tell you this about myself - I am not stable. What I mean is this: For me grief or suffering or going through this (whatever you want to call it) is a roller coaster. It's how I deal. I'll have two or three days of really up and high, and then I'll sink back down. I think Matt, on the other hand, is experiencing a more steady, constant emotion (whatever you want to call it). Regardless, it sucks for both of us, and we're having a hard time.

Usually, I keep the prayer requests centered on Jonah, but tonight I'm asking for prayers for Matt and myself. Without going in to too much detail, I just feel Satan's demons around us like I have only a few times in our marriage. This is a big thing we're trying to wade through - and we're stressed and exhausted and on edge. We need help. But here's the kicker (and I'm only speaking for me here, not for him): I don't really want to talk to the only One who can really give me the help I need. I'm ticked, and I'm pouting. And I don't want to talk about it. I have nothing to say. And frankly, I'm having some trust issues right now. It comes down to this - Right now, I don't trust God enough to pray for a healing. And it pisses me off that I have to pray, "Please God. Make it ONLY just blisters." (You know, the painful, big blisters that leave a wound equivalent to a third degree burn. Make is JUST that.) Should any parent ever have to pray that? Messed up. Wrong. UNFAIR.

I was reading Ephesians 6 tonight (but let me be clear, I am rarely ever reading my Bible these days), but I was looking for the verse that was only vaguely in my head: "Our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms." That is no joke. We are in the scariest, most horrible war ever imagined. And we are just moseying along like nothing's going on. We take the good as coincidence and take the bad and blame it on God. But this is war, and right now, I feel like I'm on the losing side.

It goes on to talk about the armor of God (you know, the cute suit you drew and labeled in Sunday school when you were a kid). "Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, and with your feet fitted with the readiness that comes from the gospel of peace. In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. Take the helmet of salvation and the sword of the Spirit, which is the word of God. And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the saints." Unfortunately, my shield is pretty flimsy, and I've definitely dropped my sword. Most moments, I feel completely defenseless, and offense is out of the question. I'm in the midst of the demons with only my bare skin.

I'm tempted to turn off comments to this post, only because I just can't hear right now the words "inspiration" or "strong" or "example." I am none of those things. I am a stinkin' sinner who has done a whole lot of wrong and is currently reaping a lot of repercussions of those bad choices (no, I'm not talking about God punishing me by giving Jonah EB - I know that is not the case). Please, if you choose to leave a comment, either let it be a prayer for us, for Jonah, or giving God the glory. Because I am sure not praising Him for any of this right now. We are on break. Please, please do not tell me how great I am. You are limited in the view you have of me. There's a lot here that's dark and gross and evil. The only goodness in me is that of Jesus. And right now, I'm not letting it shine out. I want to be radiant. I want to be actively participating (and excited about it) on the winning side. Because I know what side ultimately wins. I'm just too tired and beaten down to help fight. I want to stay here in this corner and be angry.

We are hard pressed on every side...
Perplexed...
Persecuted...
Struck down...

Someday soon I want to be able to honestly say and believe the rest.
...but not crushed
...but not in despair
...but not abandoned
...but not destroyed.

our story

Matt and I went to the same high school, but were not high school sweet hearts. I didn't even like the guy. (He, apparently, was also misunderstood as a teenager... but maybe just by me). I was very concerned about my education and was one of these people that MUST. MAKE. A's. Matt was a class clown. So, really, I just thought he was immature and goofy and a distraction. (I was judgmental). Anyway, all that to say that if you had told me nine years ago we would be married with two sons, I would have told you that you were crazy.

So what happened? Matt and I were in Spanish five together our senior year. Most Fridays, our Spanish teacher (Hey, Sra. Blythe!) would let us play Trivial Pursuit in Spanish. Matt and I would always make sure we were on the same team, because I could understand her and translate all the questions and answers, and he knew all the trivia. We were pretty much the most awesome Trivial Pursuit team EVAH. After graduation, Matt decided to come up to the mountains with my group of friends, who included Trent, Matt's best friend. We decided to go up to my friend Anna's Aunt's house in the mountains rather than to the beach with all the drunk folks. Anyway, when I heard Matt was coming, I got this fluttery feeling in my stomach (which is totally strange and inexplicable considering I didn't even like the guy). When he got there (a day or two after I had already arrived), I had just taken a shower and came down with a towel on my head. He said, "Erykah Badu." I don't know why I remember that. I have a terrible memory.

All of us spent the whole week playing games in the evenings. The first night we played the game of Life. Matt and I decided we had to be on the same team, after all, it was tradition. Anyway, I guess the flirting began then, and he touched my knee under the table. (Don't tell his mom). So we spent the week hanging out and staying up late and being on the same team for every game. And THAT is how it all began. When we were leaving the mountains, Matt said that he would call me. He said that his parents had just moved to Connecticut, and he had just moved in with his Grandaddy and didn't know his phone number. And, by the way, he had also lost his cell phone. I was thinking, "Wow. He could just tell me he doesn't want to see me anymore. He doesn't have to make up this elaborate story. Sure. He'll call me."

But, he really was telling the truth about all those things, and he sent me an email that night and called soon after. We began dating (mostly day dates because Matt worked nights), and spent the whole summer together. He had already committed to UNCW, and I was on my way to ECU. After two years at different schools, Matt transferred to ECU. We got engaged Christmas of 2002 and were married on May 15, 2004.

We tried to get pregnant for a year and a half before we got pregnant with Gabe (in August of 2007). He was stillborn at 37 weeks in April of 2008, and we got pregnant with Jonah about ten weeks later.

... And that's a really short version that brings you up to the here and now.

Here are only a few of the things I love about Matt:

- he loves sports and knows more about them than anyone I've ever met

- he has to wear a hat any time we leave the house unless he's going to work or church

- he has a ridiculously good memory

- he has a great sense of humor

- everybody thinks he's quiet and shy, but that is definitely NOT true

- he's an extremely hard worker and very, very smart

- he's a hottie

- he's a hands-on dad and gets up every night with me to help with Jonah, even though he has to get up and go to work the next day. And he doesn't resent it.

- he would do anything for me or Jonah

- he is GREAT at forgiveness

- he loves Jesus and shows me how to be more like Him

- he's fun to be around, and I actually WANT to hang out with him any time I can

... which we plan to do tomorrow when my sister and Kathryn come to watch Jonah, so we can go to lunch and a movie. Woo-hoo!

Happy Anniversary, Matt. You're my blue sky.

confessions of a targetholic

My name is Patrice, and I am a Targetholic. Today, as I walked through Target, my son woke up screaming, very unhappy to find himself in his car seat in a Target shopping cart. Finally, I gave in and took him out of his car seat, and proceeded to bounce him around Target. He kept crying. My son, it seems, does not like Target. Could it be that he prefers Walmart? My own flesh and blood? The one who has my same hair and eyes and ears? Walmart? I'm sorry to report that if this is indeed the case, I may have to disown him. My name is Patrice, and I AM a Targetholic.

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Exciting news - the magnets are here! If you ordered one, it should go in the mail by tomorrow at the latest. They are totally cute, if I do say so myself. And they did not turn out Carolina blue. They are a very nice dark teal color. I like them very much. And if you haven't gotten yours yet, please consider buying Jonah's magnet (on my sidebar). Ten percent of the proceeds will go to DebRA for EB research and to take care of other EB families, and the rest will be put toward Jonah's care. Plus it's a cute magnet, and don't you want to be cooler than all your neighbors?

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Jonah has a new blog! Our family has set up a new blog: jonahssupportgroup.blogspot.com specifically for fundraisers and prayer requests. It's basically the same idea as the Facebook support group, but the blog will be more easily accessible. Check it out!

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Q & A

What does Matt do for a living? What did I do before Jonah was born?

Matt is an accountant for a business here in Winston-Salem. I was an Administrative Assistant for the Tar Heel Region's Young Life office. I hope to (someday) be able to return to the position, because I should be able to work from home some. Before that, I taught high school Spanish for four years - 3 years in Pitt County and last year at Grimsley High in Greensboro.

What will we do as far as daycare is concerned? Schooling?

At this point, Jonah is way too high-maintenance to consider a traditional daycare situation. So for now, I am a stay at home mom indefinitely. I don't know how things will be in the future, but if Jonah's doing okay, I'd love for him to be able to go to public daycare at some point - just for the social advantage. I think he would enjoy it. I had considered home schooling even before this whole EB thing, but I don't think Matt's a big fan of the idea. So... I still have no idea what we'll decide about schooling (public? private? home?), but that has less to do with EB and more to do with the fact that I worked in the public school system for four years, and I'm not a huge fan of a lot of what goes on there.

What do you need? What can we send you?

Okay, but only because this was a recurring question. Here is a running list of over-the-counter things that we always need.

- Aquaphor

- Polysporin

- Masks

- Alcohol swabs

- Hand sanitizer

- Dawn dish detergent (to get the Aquaphor out of his diapers)

- Similac Advance Soy Powder formula

Our other supplies that we order through National Rehab are:

- Conco conforming gauze (4X4, 4X3, 2X2)

- sterile gauze

- 25 gauge needles

- Vaseline gauze (3X9)

- Mepilex Transfer

- Mepilex Lite

- Tubifast

Here's a link to a post I did earlier on ways people can help (but ONLY because you guys asked).

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And finally, on this night five years ago I was:

- just finishing up with our wedding rehearsal

- eating barbecue, listening to a blue grass band, and getting ice cream from an ice cream truck

- NOT sleeping at all

- and I was looking forward to tomorrow, the day I would get to marry the love of my life and my best friend

- I was dreaming (in my awake state, of course) about this:

the office

Click here for the clip of The Office I was talking about. I wanted to embed it, but for some reason, embedding was disabled on this one. Just look at Jim's facial expressions. Priceless.

answers, part 5

Are we sure Gabe had EB? Was he tested or is this just a guess?
The photos of Gabe on this blog are touched up. His skin was like Jonah's - his hands were completely raw, and the skin was sloughing off in other areas. We were told at the time that this was just because he had died in utero. We had an autopsy done and genetic testing, and both revealed nothing. However, to find EB, they would have to have done special skin biopsies to test specifically for it. Obviously those were not done because we had no idea. We know now that it was much more than just skin slippage from having died. It was more severe than that, and the autopsy came back saying he had been dead at least 72 hours. He had only been dead 36-40 hours at the most.

Does EB get less intense with age? If so, why?
Again, I'd have to defer to the experts. I know Simplex tends to get better with age. I'm not really sure, unless it has something to do with the skin becoming "accustomed" to more... similar to working through a callus stage when learning to play the guitar??? Junctional, on the other hand, is much more severe, so I don't have any idea what the outlook is for Jonah. I have been told by Adrienne (the mom who has the 3-year-old JEB daughter) that his skin will toughen up some, and he'll be able to handle more. But I also know that all EB cases are different, so there's really no way to know except to wait and see how Jonah presents.

Do I like The Office? Which character is my favorite?
I like The Office very much, although I haven't watched any recent episodes. I'm going to have to catch up online, so don't say anything. My favorite character is Jim. His facial expressions are hilarious, and half the time I'm cracking up, and he hasn't even said anything. My favorite episode ever is the one where Dwight is telling all the stuff Jim has done to him like weighing down his phone with nickles over time, and then taking all the weight out, so Dwight would smack himself in the head. That episode is hilarious.

Have you ever considered writing a children's book about EB?
I've always wanted to write Children's books in English and Spanish and have my brother illustrate them. I'd still like to do this. I hadn't really considered writing one about EB, but it's a good idea.

Matt and I started dressing change at 5:50 tonight. We were done by 6:49, but then Jonah spit up all over himself, and we had to redo one of his arms and his torso. So then we were done by 7:13. We still gave him the Morphine and Ativan at pretty normal times, but just started dressing change early. He was pretty happy through all of it, and definitely not in any pain, so that was very encouraging. And guess what I'm doing now? Watching the Lost season finale. Relaxing. Having a "normal" night. Jonah has been asleep since about 7:30, so he's apparently not caught on to the new schedule yet, and will probably have us up all night. Oh well. Once he gets into the new groove, I think we're going to love the new way of doing it. And that way whoever is with me during the day can just stay and help with dressing change rather than us having to find a second person for the evenings. I think it will be better for everyone, including Jonah.

No creative ideas or funny jokes tonight. Just glad to be sitting on my sofa watching television. More tomorrow.

answers, part 4

What keeps Jonah's hair from falling out?
I'm not sure it isn't thinning out a little. It will thin out. That's a common thing with Junctional. I figure he'll probably want to keep it buzzed when he gets older, but I don't know how bad it will be. Right now he's got a bald spot in the back, but I don't know how much of that is EB and how much of it is just typical baby rubbing it bald.

What kind of breast pump do I use? Do I nurse at all?
I use a Medela Pump In Style that is almost eight years old. It is gently used (gasp!) and was given to me by my sister-in-law. I bought all new tubing and bottles, so basically all I'm using second hand is the pump itself. I like it a lot and even took it back and forth to the hospital because I liked it so much more than the stand Medela pumps they have there. It's a lot faster. I can't breast feed at all (as much as I'd like to) because we have to make the milk a 24 calorie formula, fortifying it with Similac Advance Soy Powder and Beneprotein. It's really important that EB babies get extra calories since they are constantly regenerating skin and trying to resist infection. Plus, if I nursed, I wouldn't know exactly how much he was getting, and I'm pretty neurotic when it comes to knowing his intake. I write it down (to the exact cc) every time he eats.

Would silk sleeves help protect his face? Is there anything we can do to protect him?
We do put satin mittens on him over his bandages although they tend to fall off (they have ribbon, not elastic). I've also begun swaddling him in his miracle blanket to keep him from hurting his face in the middle of the night. It seems to be helping some, although even with the mittens, he still gives his face a good wacking during the day. He's got a lot of blisters around his eyes and on his eyelids right now.

What kind of therapy services will Jonah get?
I'm not exactly sure. I have the nutritionist scheduled to come and the OT will come next Friday. If you looked at the comments on the previous post, you'll see that Sara posted some stats for Junctional EB babies and where they are slow in developing. Our first order of business will be working with his hands, but I'm sure we'll have to work on other things (sitting up, walking etc) as time goes on. I'm sure he'll be delayed in using his hands because of how painful it will probably be for him once they are unwrapped and blistered. Same thing with walking... he may not walk until two or three years old, because of pain/fear of pain.

Will the doctors give Jonah anything to counteract the withdrawal from Morphine? If he's in pain, why are we taking him off?
We're hoping he won't suffer withdrawal, and no alternative medicines have been brought up. I don't think he'll need any. We're going down on both the Morphine and Ativan by one hundredth of a ml every day, and so far so good. It's so slow I don't think it will affect him negatively. Plus, he weighs a lot more now than when he started that dose, so he's already weaning himself. We have read that EB kids have a high tolerance to pain, because it's just a constant part of their life. However, Jonah is in pretty good shape most of the time except some isolated areas, so I think the dressing changes are less painful to him and more just annoying. Matt and I feel his pain can mostly be controlled by occasional Tylenol or Motrin (once he's older). So when the Morphine and Ativan are more for our convenience than his pain, it's time to get him off. We should have him weaned of both in 20 days. I'm excited. At that point we'll start doing the dressing change as soon as Matt walks in the door. So hopefully we can get started by 5:30 (I'll hopefully have already given him his bath), and be done by 7:00. We'll be able to go out to dinner or to a movie or just sit on the couch and watch a TV show... in real time. Wow.

Let me know if you are getting bored of this question and answer stuff. I don't feel like this is all that interesting, but you guys asked. So there it is.

My mom came over right after work today, and she and Matt's Aunt Patsy kept Jonah so I could get out of the house. (Patsy and I were going to take Jonah to Target earlier in the day, but he hasn't pooped in over two days, and I was worried he would choose the Target trip for his poop escapades... which would mean not only a back of the car diaper change, but also a back of the car leg rebandaging - when he goes, he really goes. He acts really constipated and is not eating as well because of it, and I've tried juice twice - which usually does the trick - and still to no avail. Poor thing.) Anyway, I went to Target myself, and it was glorious. I have never liked shopping by myself, but now, for some reason (hmmm), I totally dig it. I won't do the "what was on my list" versus "what I actually bought" post today, because I would be ashamed. Let me just say the extras may or may not have included Little Debbie Fudge Brownies... and Fudge Rounds... and a new skirt... and eight cases of soda (hey, they were on sale). Maybe that can be my weekly post - you know, like Not Me Monday or Show Us Where You Live Friday. We could call it "Confessions of a Targetholic. Who the Heck Cares What Day of the Week it is?" Is that title too long? It's a work in progress.

Because I've been struggling for blog ideas, Katherine got me a new book called "No One Cares What You Had for Lunch. 100 Ideas for Your Blog." You guys are in for it now...

answers, part 3

What kind of clothing does Jonah need / can he wear?
My friend Kathryn's mom, Jeannie (who is also my friend), sewed Jonah some satin lined shirts. He can wear regular pants because between his diaper and his leg bandages, they don't directly touch his skin. He could probably wear most things if I did a halter bandage around his neck, and then put a onsie on inside out under the outfit. The only problem is that it's already getting pretty hot here, and three layers when it's 85 degrees out certainly doesn't help Jonah stay cool. So... what I'm concerned about are the seams under the armpits (one of the few places not bandaged) and around the collar. Every where else is pretty much covered with bandages. That's why I've been putting him in those little overalls with no shirts. He could wear anything if it was lined with a soft material, and no seams would be touching his skin. I may get more brave and try regular clothes with just the halter bandage (without the onsie inside out), but so far I'm not there yet. I figure I'll just look out for more of those overall outfits and let him wear those shirtless to get us through the summer.



What will we do when Jonah starts crawling/walking to protect him?
Um...Er... I dunno. I'll have to educate myself and defer to the EB pro moms on this one. I'm sure - just like anything with Jonah - it will involve some creative problem solving and layers of padding. Probably no matter what we do, he will get banged up. Maybe a couple layers of bandaging with soft tube socks over his knees to hold them on? I'm so flying by the seat of my pants these days... crossing those bridges when I come to them... (and other such cliches to tell you guys that I don't know what the heck I'm doing...)

Will EB affect his diet as he gets older?
EB can very much affect a person's diet, although with Junctional I don't think this is as likely as with Dystrophic. Junctional doesn't usually affect the esophagus (I don't think). He will have very weak enamel, so is likely to have many dental issues as well as blisters in his mouth, so in that way, it could affect his diet. The mom I go to for all my info (her daughter has Junctional non-Herlitz and is now three years old) says she can eat most anything, even taco chips if she softens them in her mouth before chewing and swallowing. I'm encouraged that Jonah hasn't yet had to have a g-tube (like many JEB kids do), and hope this is a good sign as far as what his esophagus and stomach are able to handle. I think the bigger issue affecting his diet will be blisters in his mouth and weak teeth.

What kind of dog do we have, and how is he dealing with all the new change?
Deac is a Lhasa Apso. He is four years old and pretty much the BEST dog you could ever ask for. He comes when you tell him to, stays when you tell him to, and if you say, "Deac, stand up for Jesus," he'll stand up on his hind legs (thanks to Grandaddy). He's having a rough go of things right now. Not that he's being bad or anything, but he's just being super needy and always lying right under our feet. A couple times (I posted a picture), he jumped up on the rocking chair with me while I was feeding Jonah. And believe me, the rocker is not that big. When everyone now talks to the new kid the way they used to talk to you, I imagine it's all pretty confusing. I feel bad for him, and we try to show him plenty of attention, but it's tough to convince him that things are like they were... because they obviously aren't. I think he will come to love Jonah as he gets older, and they can play together.

How did we choose Gabe and Jonah's names?
I think Matt's dad was the first to mention Gabriel as a name choice. Then, when we looked it up and it meant "devoted to God," that kind of settled it for us. I always like Bible names, but not the ones that are so common. I also liked that Gabriel works in Spanish and English, as it was my hope that I would speak Spanish to him from the beginning, and he would be bilingual. Jonah we also chose because we liked the fact that it was a lesser used Bible name. I didn't think Matt would like it, but was going through the baby book and suggested Jonas. He said he preferred Jonah. I said that I did too. We had a couple other names we were considering, but we settled on Jonah within a couple days. It was really important to me to name him early in order to help me with the bonding process. I had a really hard time the whole pregnancy letting myself be hopeful enough to imagine we'd be bringing a baby home. Calling him "Jonah" instead of "the baby" was really instrumental in helping me separate him from Gabe and helped grow the bond I was not letting myself feel.

Speaking of Gabe, I'm really missing him tonight. I was just looking at their pictures at the top of the blog and thinking how much they look alike. I get sad that I can't imagine Gabe as a one-year-old, but can only picture him as the newborn I have pictures of. I've been frustrated today - Jonah has been high maintenance, dressing change was extremely hard tonight, in an attempt to get boogies out of his nose so he can breathe and eat, I pulled some of the skin lining his nose out... etc. I'm just feeling a little overwhelmed. I'm tired. I know tomorrow will be better. But in these moments of weakness, not only do I feel guilt (although I know irrational) for feeling frustrated with Jonah, I also think of Gabe. I wonder how in the world I can feel irritated with Jonah when I lost all my time with Gabe and begged and begged for Jonah to live. I miss him so much and love both of them so much. And I just wish I was good at showing it all the time. I feel like all I want to do is make him proud of me, and I fail over and over again. I need to get out of the house. :)

I wrapped Jonah in his miracle blanket tonight. His great Aunt Melanie gave it to him, and I've yet to try it, just because I wasn't sure he could be swaddled. But most of him is bandaged, and the seams aren't thick or rough, so I'm giving it a shot. He's getting really strong with his arms, and although he's wearing satin mittens over his bandages, he's really wacking the crap out of his face. It's my attempt at preventing further blisters. He's face was healing up really well, but yesterday, he started getting a lot of new blisters around his eyes and forehead.

Maybe it will make him sleep all night??? (yeah, right)

I'm going to pretend. If I go to bed right away, I might can get four hours of consecutive sleep. I need about 48. Seriously, I'm pretty sure I could sleep that long.

a very happy mother's day

I was very thankful for a nice, fairly cool day here today. We were able to take Jonah and meet my mom and Shaina at a local park. We got KFC (fried, not grilled... WHAT is the deal with that? If I wanted KGC, I'd go to a different restaurant), and spent a couple hours eating, taking pictures, walking, and hanging out. Jonah pretty much slept the whole time. We did get to go to church this morning, but only made it through Sunday school, because by the time we caught up with everybody after class, it was time for Jonah to eat. We were going to feed and diaper change in the car (to avoid the nursery), but by the time we would have finished, worship would have been almost over. So we just headed home. I was very excited and happy to be there, and hope to make it the whole time next week.

My beautiful, intelligent, funny, wonderful mommy.

Shaina in a torture rack.

Matt losing his sno-cone that he bought from the ice cream truck.

It was a great day. Much happier than last year. Last year, this weekend was very difficult for me. Saturday (May 10th) was Gabe's due date, and Sunday (May 11th) was Mother's Day. Please read this post to see how God gave us our miracle last Mother's Day. This year, I loved the day with my mom and loved the day with Jonah. I don't take any of it for granted.

answers, part 2

Katie - HELLO! Of course Superman would win. He had super powers. Batman was just a rich boy with cool toys. Superman would open up a can of woop-butt on Batman. But Matt says to tell you that they would never fight anyway. After all, they are both in the Justice League. (And he says to say, "What if the Batmobile was made of Kryptonite?")


Question 1: What is a normal day like for us?
I'm not sure we have any concept of "normal" or "consistent" around here. Every day is different, but always very, very busy. I usually get up between 7:30 and 8:00 (after being up with him for an hour and a half around 3 or 4) with Jonah, and give him his first bottle of the day. (Feeding Jonah takes an hour - this can include preparing his bottle, drawing up his meds, one to two diaper changes, rebandaging (if he pees or poops on his leg dressings), saline drops, picking the boogies out of his nose so he can breathe to eat, burping, and oh yeah, feeding him his bottle. It's quite the ordeal, and those visions you may have of sweet, calm bonding time that is quiet and peaceful... er, um, not at our house). So anyway, that takes a while. Then I usually rock him back to sleep, put him in his chair or swing and check my blogs and email. Then I take a shower and pump. By that time, it's time for Jonah to eat again or he's spit up everywhere or peed out of his diaper or puked all over his chest and arm bandages. There's also LOTS of laundry to do, washing of bottles and syringes, and other household chores. I'm also working on finding addresses and addressing envelopes to send out birth announcements. I'm so behind. (Don't even get me started on thank you notes. I wouldn't advise holding your breath.) No day is ever the same, but lately I've been trying to get out at least once every other day, just so I don't go nuts. And usually, you guessed it, I go to Target. Man, that doesn't sound like as much as it is, but it is. (Note: I do usually have daily help who do many of the above things - I usually do all the diaper changing and bandaging.)


That leads me to...
Question 2: What's a diaper change like for us?
We have found that FuzziBunz work best for Jonah's skin while still keeping the pee and poop in (for the most part). We get a diaper, slather Aquaphor all over the elastic, and when he has breakdown on his bottom (like now), we take a vaseline gauze, fold it in half, aquaphor both sides, cover the side that will be touching him in Polysporin, put it on his bottom, put the diaper on, slather his legs all the way around with Aquaphor and snap the diaper. Voila! (Unless he's leaked out of his diaper onto his bandages in which case we have to rewrap at least the tops of his legs). All of this Aquaphor on his diapers makes them lose their absorbency after a while, so today I "stripped" them, washing them using Dawn dish detergent, vinegar in the rinse cycle, and then rewashed them using Dreft. I have only 15 FuzziBunz, and Jonah potties A LOT, so we have to wash diapers often.


Question 3: Now that I'm a stay-at-home mom, do I find myself with free time and if so, what new hobbies have I picked up?
I definitely have less free time than I used to. Blogging is the only "hobby" I get to do, and even this doesn't get done sometimes until late late. (Like tonight.) My only free time is basically from 10:00pm to midnight. I used to read and scrapbook. I like going to the beach and camping. If I ever get more free time, I hope to be able to continue my Admin job for Young Life from home.


And last question for now:
What are our chances of having another child with EB? How will this affect our decision to have more kids? Would we consider in vitro/adoption?
This question is hard to answer. Not because I don't have opinions or Matt and I haven't talked about it, but just because I know our plans aren't necessarily God's plans, and it's hard to put something like that into writing when you know in six months, you could have changed your mind (or God could have changed it for you). We have a 25% chance of having another kid with EB. But Gabe had it too, so we consider that 100%. At this point, all we know for sure is that all of our time and focus is on Jonah, and I don't think we'd consider more kids for two to three years. However, it makes me very sad to think that this was my last pregnancy, and I know we both would like more kids. Matt and I have talked, and I think, at this point, we are both leaning toward adoption. Right now we feel like we wouldn't want to spend all that money on in vitro when it might not work, and when there are already plenty of kids who need loving families. I feel God calling us to this option. As far as "donation of product," we are SURE that if it's not a baby that is a combination of the two of us, we are not interested. (Except adoption, of course). But like I said, God could have a different plan, and if He surprises us with an unplanned pregnancy, we'll be thankful, prayerful, and will love, care for, and glorify God for whatever child He may give us.


Okay, off to bed. Matt and I are going to attempt church tomorrow for the first time since before Jonah was born. We'll go for at least Sunday school and then see how it goes. We were going to try it the last couple weeks, but his face was so bad, I was worried about germs with so many open, unbandaged wounds. Please pray for a good night for Jonah and a successful attempt tomorrow. I'm so excited and completely anxious at the same time. I know Church is about God and not about me, but man, I'm pumped for me. I know I have suffered spiritually because of all we've been through along with missing our weekly rejuvenation time of praising God along with our family. I can't wait. Please also pray that God will protect Jonah from infection. It will be the first time we are taking him somewhere where people will be in such close quarters, and I'm a little concerned about germs. Thanks for continuing to pray for our family. We appreciate it so, so much.

Oh, and Katherine, I ALWAYS have spacing issues with blogger when I post pictures. Drives. Me. NUTS.

answers, part one

Sorry for the late post tonight. It's been one of those days where I've been constantly busy, but then look back and wonder what in the world I've accomplished for the day.

I'll answer a couple questions tonight, but will probably make this short (I always say that and they end up being the longest posts), so I can catch up on my LOST.

Matt said I should answer some of these in one sentence. I asked him if I had EVER been one to answer anything in one sentence. The answer is no, my friends. I can claim to be a lot of things, but concise is not one of them.

Most important question first: When you go to Target and you have Band-Aids, socks, stationery and apples on your list, what ELSE do you leave with?
Good question. And I saved my Target receipt from today so I could answer accurately. On my list today: drinking glasses, cooler (thinner) receiving blankets, kitty litter, deodorant, gallon size Ziploc bags. What I actually bought: 2 sets of receiving blankets (go big or go home), a set of soft burp cloths, Utz Honey Barbecue Chips, deodorant, drinking glasses, gallon size Ziploc bags, and a $3.00 whale shorts and shirt outfit (that he may be able to wear???) for Jonah. I did NOT, however, get cat litter after struggling royally to wrestle the 28 pound box to the bottom of my cart (is 28 lbs heavy or am I just really weak?) to later call Matt about what kind of deodorant he wanted, for him to then report that he had already picked litter up on his lunch break. Note to Matt: Don't put stuff on the master list if it is also on your mental lunch break list. That is in violation of statute 422, line 7, page 64 in the "Being my husband" handbook. So then I had to wrestle it back on the shelf. (Let me also add that I had put entirely too much thought into which kind of litter to buy in the first place - taking into account price, quantity, level of fragrance, clumping ability etc. and so on and so forth - go big or go home, people).

Question: What about the bone marrow transplants being done at the University of Minnesota?
I have only seen a couple things on this, and from what I understand this treatment is being done on patients with Recessive Dystrophic EB only. Also, they are only accepting children who have a sibling who is an exact match to the trial. So that's two against Jonah. I don't know if this would be a cure for Junctional too or if it would only work for RDEB kids. All you RDEB peeps out there, clarification? I am very excited about this trial - I think it's 4 for 4 with awesome success - even if it is a cure for RDEB only. If only there were more money and more awareness... let's get this train a movin'. These kids need help. I have heard about some skin grafting being done with some success on EB patients and need to look into this (but haven't yet).

Question: Why do we keep Jonah bandaged? Is it because he has wounds or just for protection?
Both. (HA! You thought this was going to be a one word answer... sucka!) We mostly have him wrapped for protection reasons, although he does have spot blisters. Right now, he has breakdown on his face, ears, upper left arm, bottom, upper right thigh, and left ankle. His ankle and bottom are his worst spots. Every where else is soft, clear, beautiful, seemingly healthy skin, but would blister at the slightest friction or pressure if unwrapped.

Question: How will having his hands wrapped affect his development?
If we were to leave his hands wrapped, he would not be able to develop his fine motor skills. Therefore, it is our plan to start leaving his hands unwrapped within the next few weeks. I'm very scared about this, and it is a definite prayer request. His hands will blister (as we saw when we tried to put the mitten on him), but we'll just have to drain and keep on going. He has to be able to touch and feel and hold and explore with his fingers. But it will be painful for him and blisters are inevitable. And it makes me sick to think about it. But we have no choice. At some point, you just have to accept the sucky parts and move on.

Question: Do we have air condition?
Yes. (Woo-hoo! Look at me. One word. Except for these subsequent ones.)

That's it for Q & A for now, but I'm enjoying the questions. Please feel free to re-post a question if you've posted it at a different time, and I haven't answered it.

Cool things:
- the Praise Baby CDs a wonderful blog reader sent. Jonah really likes them, and so do we. Thank you!
- the Target gift cards and one hour massage I received from blog readers for Mother's Day. You guys are too sweet!
- the FREE freezer that was DELIVERED TO ME by a sweet, sweet blog reader. Thanks, Trish.
- the plethora of milk storage bags I now have.
- the 1,000 Japanese cranes the Japanese class from South Central (where I used to teach) sent me. In Japanese culture, you try to fold 1,000 cranes to make a wish come true. And those sweet high school students spent two days folding cranes and wishing for Jonah. They also raised money for us. High school students. Teenagers. Amazing people.
- And finally, the fact that I received packages from MckMama AND Kelly today. WHAT? If only Angie had sent me a package, it would have been the ultimate blogging trifecta. Hey, two of three ain't half bad.

And now, I must go. I'm trying to watch LOST and type, and well, I'm completely lost. What year is it? Where are they? Who's that? Who is his daddy? Why are people coming up out of the water? Whose side is Sawyer on anyway? I'm so confused.

And next time I say it's going to be short, I'm for serious.

you should see the other guy

You should see the other guy...

Although the left side of Jonah's face is finally healing, his right side has decided to join the party. Both sides are at the scabbing stage, with no new ones (this hour, anyway), so I'm hoping his face will be looking tons better in just a couple days.

HA! Chest freezer! I get it. I wasn't trying to make a joke, but glad you guys got a laugh anyway. I'm so funny, I just can't help myself. (Reminiscent of my senior year in high school when everyone was voting for superlatives, and I was trying - campaigning really - to get voted funniest girl. I was literally walking around to my classmates at lunch saying, "I'mafunnygirl. Vote for me." It was quite pathetic actually, but really just an attempt to demonstrate my clever wit and humor. They apparently didn't get it. I didn't win. I was misunderstood as a teenager.)

Our appointment went well yesterday. There wasn't actually a whole lot to it. He asked if there were any spots besides his face that we wanted him to look at. We said no - not that there aren't spots, but I'm just not concerned about how they look - so he didn't have to unwrap Jonah at all. He did get us on a schedule to wean him off the morphine and ativan (woot woot), and gave us a dentist there in Chapel Hill who can consult with whoever our local dentist ends up being. As far as prognosis, he couldn't really clear things up for us. It will be clinical from here on out - just watching Jonah and seeing how he does. Junctional can range anywhere from dying in the first year, dying by six years old, dying in your teens or early twenties, or living a full life. So we just don't know. And we'll just have to deal with it. I loved Dr. M though (even though he was wearing a Carolina shirt). He was very kind and took plenty of time with us. It was a good trip all around, and I feel peaceful about it. I've been a little more up these last couple days. Getting out of the house has done me a lot of good. We stopped by my brother's house after our appointment yesterday because Jonah needed to eat. We knew it would get us home later, but we opted for a late dressing change rather than a screaming baby all the way home. We'll see the dermatologist again in three months.

I don't really have anything to post about, so I thought I'd open this one up to questions. Lots of times I get questions in the comments, and although I read them, I don't have a good way to answer them unless I just dedicate a post to that. So... on that note, feel free to leave any questions you have on this post, and I'll work on answering them (as I have time) over the next few posts.

Hope you're all having a wonderful Thursday. My pump's calling... literally.

the weekend

Kim (Matt's sister), Andrew, and the kids came down from New York this past weekend for a visit. Although Kim spent a lot of time at the hospital with us and Andrew had flown down for a day to meet Jonah (while he was still in the NICU), this was the first time the kids had met their cousin. They were sweet with him, but were definitely more intrigued with Deac. Can you blame them? Deac plays fetch and stands on his hind legs for food. Jonah sleeps and cries. I can see how the kids would find the dog a little more exciting.

It was a good weekend. The kids spent most of their time outside playing baseball. Grant is going to be quite the player, I think. He was hitting them over the fence, batting both ways. Abby is quite the tennis player, and I can't wait to see her play sometime when we travel to NY. And Will (at the age of 3 1/2) is quite the numbers whiz. At the PA state line on the way back, he said, "I want to go see Jonah again. Take me back to four-zero-one-zero (our house number)." They are great kids, and we miss them very much. We'll see them all again July fourth week when we head to the beach for our annual trip. (We had thought about NOT going, but we've decided to give it a shot - even if we end up not being able to be there all week - taking shifts being with Jonah inside. The house we stay in is always very cool.)

I actually didn't take that many pictures of the weekend, but here are the few I did snap.

Kim, the kids, and Jonah.

Silly faces.

We have our appointment with Dr. M, our dermatologist, tomorrow in Chapel Hill. He has several EB patients, and I'm excited to finally talk to a doctor who knows more about this disorder than I do. I have a LONG list of questions, but I hear he's just great. I'm sure it will be a very informative visit. I must admit, I'm a little worried though. It will be the first time we've taken Jonah anywhere but around here, and I'm sure there will be a lot of wrapping and unwrapping of his dressings while we're there. As much as I like to get out, it sure is easier just to stay home.

Oh, funny thing. I had to go out yesterday and get some breast milk storage bags, because I was completely out (I went with Gerber - half the price, larger size so last twice as long). Then Matt comes in from work and has about eight packages from our PO box. I think six of them were milk bags. :)

Thank you guys gals so much! Now I just need a chest freezer to keep all this milk in. It's outta control. And believe me, when the freezer is so full that bags of milk are falling out and crushing your toes, it's not fun.

all smiles

Here are a few pictures my sister, Shaina, took on Thursday night when Matt and I went out to dinner. Apparently he decided to use up a week's worth of smiles in the hour I was gone, because I don't think I've EVER seen this kind of smile action from Jonah. It's rare that he's this content, but when he is, we can either get a few smiles or at least a few open-mouthed grunts from him. These photos are from the first bath (before all the spitting up) when he still thought bath was a good idea. By the second round, he had definitely changed his opinion. I'm happy to have photographic proof of the happy bath.

jonah's face

Jonah is looking really rough right now as far as blisters are concerned. The pictures I posted two days ago were not from two days ago. They were from early last week. I'd love to say that his face is the only bad spot on him right now, but unfortunately he's having a hard time in other areas too. His ankles and feet are broken down again, the back of his right leg bleeds every night during dressing change, he's got new blisters on his upper thigh on that same leg, and still has the bad one under his armpit (although it's looking much better). His face and ears are BY FAR the worst, getting new blisters every day, sometimes getting new ones from hour to hour.

It breaks my heart.

I guess I thought when we left the hospital, and he was improving so much, that if I just took care of him a certain way or bandaged him well enough, that I would be able to control and prevent them. I'm so frustrated to learn that this is most definitely not the case. They are not cause and effect like I expected. Half the time I have no idea why he got a blister a certain spot, and as far as his face is concerned, there doesn't seem to be any way to prevent them. I don't know if it's the warm weather, the fact that he's getting stronger and is moving his head around more, or something else. But it's bad. It's sad. And I hate it. I won't even take him out when he looks this bad, because I don't want to have to answer any questions. I know I'll get over it, but this is the first time it's been so obvious - just by looking at his face - that something is really, really wrong. I just don't want to have to explain.

Please pray for Jonah - that he will adjust to the warm weather (I don't know if that's how it works - we are trying to keep it cool in the house, but it doesn't seem to be helping), and that his face will quickly heal and will become more durable... or at least that we'll figure out a way to keep it from getting so bad.

He's still beautiful though. Sweet boy.

Friday, midday.

Saturday, midday

Saturday night

This morning

date night

Matt and I enjoyed our night hour and fifteen minutes out. We left the house around 5:45 and were back by a little after 7. We went to one of the best restaurants ever, were too full for dessert, and well, to tell you the truth, I missed Jonah. And he knew I left him, people. He stared me down when I got back. I told him it was all daddy's fault. He forced me to go. I had nothing to do with it. Honestly.

(Don't worry. He showed me. Although he had already been bathed and dried, he proceeded to mega-spit up - twice - morphine and all - all over himself, warranting a second bath and a medication free dressing change. Good times.)

On our way...

One of my favorite restaurants (we had to go ALL the way to Greensboro, oh the humanity)...

The BEST salad (and bread!) ever...

Teriyaki Club Steak with loaded mashed potatoes...


Teriyaki on steak??!! No, Patrice, that doesn't sound very good. Oh, young grasshopper, ye of little faith. Just try it. Long gone are the days of teriyaki being only for the chickens. Teriyaki is the new A1. Take my word for it. I don't play around when it comes to food. And whenever you're ready to live on the edge, medium-well butterflied is the way to go. Consider yourself schooled.

a whole lotta cute

Cute Baby.

Cute Dog.

Cute Baby with Cute Dog.