still no blisters

We did dressing change today around noon, and STILL no blisters! Woo-hoo! I'm still not quite ready to say we're in the clear, but if they still haven't appeared by tomorrow, I'd say we should be all good. I'm so happy to think that there may not be damage. I mean besides all of the pain to Jonah, and the difficulty to us in having to lance and drain, lance and drain, lance and drain, logistically it would just be really hard since we're going to the beach this weekend and all. I'm thinking they would have shown up by now, but not certain. I'll let you know tomorrow. Thank you so much for praying. I really will attribute this one to a MIRACLE, because there's no way it would make sense for him to not get blisters. He can't even rub his face without blistering, and this was a lot more rough than that.
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UPDATE: PEOPLE, please. Certainly you must know that I had already checked Kohls,Target, and Walmart before the mall for bathing suits. NOT check Target? Who do you think I am? Silly, silly. Have you learned nothing?
(I was disappointed with Target's selection of TANKinis although I did find a dark green one there I think I've decided to keep. Kohl's had absolutely nothing in the sizes I needed, and I didn't like Walmart's selection nor did they have my size)

On another note, Jonah went to the mall again today. I am NOT a mall girl. In fact, I grew up hating the mall - the crowds, the popularity game, the high prices - gross. But now, now I'm growing fond of the mall. A place we can go where it is very well air conditioned with lots to see and do. I'll probably have my Christmas shopping done by October. Jonah, on the other hand, likes to sleep in the mall, which I must say makes it EVEN better. (Oh yeah, somebody posted a long time ago all the places in the mall where they have feeding areas, but I can't find the post. Can you leave that comment again?)

The reason for my subsequent mall trips? Bathing suit shopping. Don't even get me started. I'm a 10/medium top and a 6/small bottom, so either I have to pay for a set that I can only wear half of, or I have to buy the separates and spend $80 (at least) on a suit. So frustrating. And I can't tell you how many times today I'd find a top I really, really liked only to search the whole store to find a bottom to go with it to no avail. So after buying one top that I think I can match with a set of bottoms I already own, three hours later, we returned home. I can probably wear a couple of my suits from last year, but let's just say that now that I'm breastfeeding, they are going to fit... er... um... a little... differently.

I'm excited about the beach, but also pretty stressed about all we're going to have to pack. I started making a list, and I'm already on page three of JUST Jonah's stuff. There's no way it's all going to fit in the car, but one of Matt's coworkers is going to let us borrow a canvas rooftop carrier, so that should help. I'm also nervous about how he'll do on the actual trip considering the farthest he's ever been is Chapel Hill. We've decided to head to Matt's parents in Florence on Friday to break up the trip, and then we'll head on to the beach on Saturday. We'll get up Friday, finish packing, do dressing change, and then hit the road. I'm not sure how we'll work dressing change on Saturday, although I would prefer doing it at his parents before we head to the beach. With unpacking and fireworks etc, it would just be nice to have it out of the way.

Well, I'm gonna go. Lots to do, and I probably need to share Jonah duties instead of hiding in our room, pretending I'm still pumping. Muah-ha-ha! Back to life. Back to reality. Back to wonderful.

prayer request

Update: We did dressing change from 5:00-6:30, and at that point, Jonah did not have any blisters. Maybe good news? Maybe not. I don't know what the turn around time is for cause and effect blisters, because I can't usually determine the cause and effect. I mean, he rubs his face ALL THE TIME, but I can't say, "Oh that blister was caused by that time he rubbed his face." Normally, we wrap him one day and then 24 hours later is when we find new stuff. So... still be praying. It literally will take a miracle for him not to blister. But hey, that's what we'll pray for. I'll update when I know. And just so you know, I'm not super angry with the nurse or anything who mishandled him. I mean, obviously, I wish he had been creative in his problem solving and figured out a different way, but I know more about EB than he does and it's MY responsibility. I'm not beating myself up or letting the guilt get to me, I'm just saying. I'll always be the EB expert, and it will always be MY job to educate. That's just the way it is. And for the record, he was great at drawing blood and only had to stick Jonah once, and got the whole 10 cc's in one shot. I was extremely thankful for that. I just felt it important to clarify that sadness and worry are more my emotions than anger. That same nurse has been a jewel for us figuring out meds and answering my (almost daily) questions. He even went and dropped off Jonah's morphine prescription refill one day because it couldn't be called in, and I couldn't leave the house. But yeah, I plan to take pictures and show the staff the result, just so they understand the effects and WHY we have to be so careful. As always, thank you so much for keeping Jonah in your prayers.
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Jonah just had his fourth month check-up and things look pretty good. Dr. B was happy with his height, weight, and head size, and they are all consistently on the 25th percentile curve.

I do have a couple prayer requests:

- There is a wound on his thumb that she seems a little concerned about (and that seems to be causing him some pain when touched) and has asked me to keep an eye on for infection. Please pray that Jonah will continue to resist infection, and that Matt and I will be able to discern the "subtle" clues (her words) that let us know that it truly is infected. I'm just so afraid of missing something.

- They had to take 10 cc's of blood today for his genetic testing. When they did, the nurse used a tourniquet on his arm, which put a ton of pressure on his skin. They put those things so tight! It took me off guard, and even though I said something about it, I kind of got the "we have to do what we have to do," so I just stood by while they did it. I didn't even think to get them to pad it with some Transfer or anything. Also, instead of just putting some pressure on his injection sites, the nurse just rubbed and rubbed the shot spots. Again, I asked if he had to do that, and he said yes. Whereas, after talking to the DebRA nurse, she said just pressure without the rubbing would have been sufficient. Please, please pray that Jonah will not blister terribly on his arm and on his upper thighs. I'm so scared as to the damage that may have been done. Ten minutes of stuff like that can cause us three weeks of healing work and Jonah a lot of unnecessary pain.

I just don't feel like I was a good enough advocate for him today. The only part of the blood draw I had thought about was the needle part, so when they put the tourniquet on him, it just completely caught me off guard. And he's had plenty of vaccinations, and they've never rubbed on him like that, so I didn't even know that was a possibility. I definitely would have told them NOT to ahead of time. I just feel so responsible. It's hard when you know how hard you work and how diligently you care for your child so he will NOT blister or get infections, and then, all of a sudden, he's in someone else's hands, and you feel like you have no control. I just didn't speak up more because I didn't know what was medically necessary.

But now, I'm educated. I just hate that Jonah has to suffer for me to learn the hard way.

Please pray that it won't be bad. When he's gotten bad blisters on his thighs before, they've grown and grown to where the whole top of his thigh is just raw, open skin. And it is impossible to wrap him there, because even though I wrap him up to his groin every time, he kicks his legs and everything just rolls down off his fat little thighs. Not to mention his diaper rests on his upper thighs, so having raw skin there is NOT good. It's so NOT good for so many reasons. I'm freaking in my head a little bit. Maybe it will be okay. Maybe it will be okay.

Please pray.

jonah's first walk

Last Tuesday, we got to take Jonah for his first walk. (Isn't that crazy that we've never been able to take him for a walk?) Since I was able to get dressing change done earlier in the day, we were able to go out around 7:30 or 8:00 when it was a little cooler.

Jonah seemed to really enjoy it, and I LOVED getting outside. Summer is our enemy, but I'm hoping the evenings will be cool enough we can get out some. I'm looking forward to breezy evenings at the beach. Maybe Jonah will be able to get out then.

Here are some pictures from our walk.

four months today

Hello world. It's me, Jonah, again.

Today I turned four months old. Can you believe that?

I weigh 12 lbs, 15 oz, and I'm about 23 1/2 inches long. My head has made it up to the 25th percentile, and I'm staying on a really good growth curve. I'm thriving and steadily gaining weight. Mom and Dad are so thankful to God for the way He continues to protect me and helps me thrive. They still attribute so much of that to the hundreds of prayers that go up for me every day. So amazing.

Eating is still a struggle for me. Sometimes it's because of my acid reflux, and sometimes it's because I'm just so tired. Mommy says it's because I need so much energy to heal and regrow skin, and so I sleep a lot. Unfortunately my deepest sleeping occurs between 7pm and midnight, so I'm still waking up a lot at night. I'm now waking up two to three times a night and only eating about an ounce when I do wake up. Needless to say, Mommy and Daddy are really tired. Mommy's starting to put rice cereal in my bottles, and she's also switching me to a really smelly new formula that's supposed to help me. I'm not so sure about it yet, but I'm going to keep trying it.

I'm even more fun now than I was a month ago. I smile and coo regularly, and I'm starting to have whole "conversations" now. I love it when you say, "Ah-Ah-Ah-CHOO" and "SHOO... Stinky Feet." That makes me laugh out loud. I still love to lie out flat on the changing table and have Mom and Dad talk to me and play with me. Mommy thinks I'm just the cutest thing in the world, and I'm pretty sure Daddy agrees.

I'm also starting to like tummy time, and I really like looking at myself in a mirror. I don't know that it's me that I'm looking at, but I sure do like to talk to that other baby. He's one good looking little fellow - that's all I know. My favorite books are Peek-A-Boo I Love You and Old MacDonald Had A Farm that has finger puppets. If I can get my burp cloth on my arm just right, I'll play Peek-A-Boo with whoever is holding me. I'll bring the cloth up to my face while you say, "Where's Jonah?" and then bring it down, so you'll say, "There he is." Then I smile so big.

I like it when Mommy sings "Crazy" by Patsy Cline, and I also like "You are my Hiding Place" when I'm trying to go to sleep. I still like when Daddy sings the Star Wars theme song, and Daddy says I'm starting to like the Superman theme.

And see what chair I'm sitting in?

The one I didn't like last month. It is my new FAVORITE place to be. I wake up happy these days (well, at least after a diaper change) and I'll hang out in this chair and smile at mommy while she makes up my morning bottle. (It helps that she's usually singing and dancing around like a crazy person). It's some of mine and mommy's favorite time.

I'll also hang out for as long as mom will let me watching Noggin. My favorite shows are Max and Ruby and Wonder Pets. Or maybe those are just Mom and Dad's favorites, so they're making them my favorites too. But I'll also watch whatever else is on TV too. Daddy and I watch the Braves most every evening.

I'm still liking my bath most of the time. Sometimes if I'm grumpy and tired, it's not so great, but mostly I'm pretty content. What I DON'T like is the getting out part. I just scream and scream and usually it takes a bottle in my mouth to calm me down. But back to the bath part - I dig it.

See?

I told you.

I especially like getting kisses from Mom and Dad. Don't be fooled by my crazy eyes. Daddy kisses are delicious.

Mommy's always all over me like this. I think she loves me a little bit. She sure does smoosh her face up against mine like this a lot. I'm starting to think I better just get used to it. I don't think she's going to stop any time soon.

Mommy and Daddy started unwrapping my hands a few weeks ago. So far, things are going pretty well. I'm getting blisters on my fingers, but they are not swelling any more, and they are not usually blood blisters. Mommy is so happy to see my fingers and that now I can hold her finger and touch her face... even if I do get her all greasy with Aquaphor.

I'm not reaching out for things yet. I'm a little behind in this since my hands were wrapped up for so long, but I always try to hold my own bottle. Grandaddy seems to think I'm going to be a lefty. Dad would be so pumped. Baseball here I come.

Today has been a big day for me. This morning, I got to meet so many nice people at a special fundraiser they did just for me. Miss Helen and Mommy both started crying, and they said a prayer for me.

Then, Daddy gave me my first video game lesson. True, I slept through it, but I'm sure there will be many more to come.

Then, Mommy, Nana, and I went to the mall. And guess what? I got recognized by four different people in about a two hour period. It's pretty crazy, but just makes me realize just how many people are praying for me and love me. Mommy and Daddy are so overwhelmed at all the love. I don't really get it yet, but I will someday. Mommy says she's got a lot to tell me.

Mommy says she's starting to think more about my future, and she's able to look ahead instead of living in so much fear. Mommy tends to worry a lot. I try to tell her to chill out, but she doesn't really listen. She's a little bit of a control freak, but it's her only vice, so I try to cut her some slack.

Anyway, life just gets better and better, and Mommy and Daddy say they feel so blessed to have me - living, thriving, enjoying my life. I feel pretty blessed too. I know God made them just for me. And not only do I have a great family (that includes so many grandparents, aunts, uncles, and cousins that love me so much), but I also have so many strangers out there praying for and loving me too. And I'm so thankful. I can't wait until Mommy tells me my amazing story. She says I'll be blown away. She is.

Thank you, Jesus, for the life you give me, the breath that sustains me, for giving me yet another day. I can't wait for tomorrow. I can't wait for more living. More living for YOU.

jewels for jonah

My friend Helen, owner of Women's Wellness and Fitness Center (my former and soon-to-be (hopefully) current gym... my probation officer (Jonah) and I are currently renegotiating the terms and conditions of my house arrest) has decided to do a fundraiser for Jonah this Saturday. Women's Wellness is having a Sizzlethon Zumba Dance Party from 9:30am-11:30am this coming Saturday. That's right, people. I said it. A Sizzlethon Zumba Dance Party. (Don't you like how I act like I know what that this?) Seriously though, "Derived from a Colombian word meaning to move fast and have fun, Zumba combines music and movement from a variety of international dances including salsa, tango, flamenco, cha cha, belly dancing, and hip hop." (I tried it once. It wasn't pretty. I'm actually trying to block it out. I CANNOT dance. It's my only vice).

Anyway, at the Sizzlethon, they are raffling off a beautiful diamond necklace. Raffle tickets are $5.00 each, and you don't have to be present to win. But if you are present... we can meet (little hooray) and you can possibly meet Jonah (big hooray!)... the possibly Jonah part is very low-chance, but it is a possibility. If he wakes up doing well Saturday morning, I'll bring him with me. If he's a fuss box, he's staying home with daddy. Or I may decide to keep him home anyway because of germs... if he has a lot of open sores on his face.

So...

If you want to sizzle or Zumba or dance or party or get a pretty necklace or any combination of those things, come on over. I won't be able to stay the whole time, but hope to be there by 10:30 or 11. And I don't know if I'll have Jonah in tow or not.

Hope to see some of you on Saturday!

(If you go to Women's Wellness web site and click on announcements, you can see the above flyer full size or you can see the event on Facebook.)

GI appt

Just a quick post tonight. I'm extremely tired, and so is Matt. We got in bed at 10:30 last night, and Jonah had us up (for at least a half hour every time) at 11:30, 2:30, 4:30 and 6:30. And he would take about one to one and half ounces each time and fall asleep. So frustrating. Gone are the days of waking us up only one time at 4:30. Night before last he woke us up from 12:30-1:15, 3:30-5:00 and then again at 7. I'm soooo tired.

The GI appointment went well today. Dr. S was extremely nice, and spent A LOT of time with us. He has taken Jonah off the Zantac but is keeping him on the Prevacid. He says that Prevacid is such a stronger medication, he doubts we're getting a whole lot extra out of Zantac. Plus, one side effect of Zantac can be headache, he says, and it's annoying because it's a three times a day drug. So anyway, for now we're taking him off it. We're also going to have to switch him to the Similac Alimentum powder to fortify the breast milk instead of the soy... just in case he's having an allergy to the milk protein... which is also found in the soy I guess? That stuff is crazy expensive. I bought two cans at Target tonight, and it cost me $50. I'm sure I can look online for coupons or on eBay for unopened jars and stuff, but tonight was just a "get by" sort of thing. Crazy though. We're also going to put a Tbsp of rice cereal in three to four ounces of milk to see if that will help things. We've only tried one bottle like this, and he screamed bloody murder the whole time, but I figure it's more of a tired thing than cereal/formula thing.

Ok, my eyes are closing, and my pump's starting to talk to me again. "Ifyoutypetheywillcome. Ifyoutypetheywillcome."

That's my cue, folks.

When you're feeling like baseball players could come out of corn fields blog readers could come out from behind light posts at any moment, you know it's time to go to bed.

So good night. I can't wait to sleep seven consecutive hours be up in 30 minutes with Jonah again.

(But just in case you didn't know - he's totally worth it.)

something other than dressing change

UPDATE: As soon as I finished posting this, Jonah woke up to eat. No big deal, you say? He had a blow out poop that covered the tops of both legs and peed through his blue vibratey chair. So... I had to redo the bandaging on both of his legs and then put him in the swing (which he's loving less) to do clean-up duty. There was a whole small load of laundry because of the beast of poop this was. And the kicker? I was here all by self. So, yeah, as soon as I post about free time and NOT having to do dressing change, the bottom falls out. That sounds about right. :)
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So Jonah and I are just sitting around the house today. He's asleep in his blue vibratey chair, and I'm ... well, you know what I'm always doing when I post.

And guess what? Dressing change is done for the day. My mom's out of school now, so yesterday, she suggested we try it on our own. And we did. And it went GREAT. So, we tried it again today. And it went well again. Woo-hoo! So if I can find enough people who are willing brave enough to take on a more substantial role in Jonah's dressing change, I may start trying to do it around 10 or 10:30 every day to get it over with. Then, I could have the whole afternoon to do chores etc around here, or Jonah and I could go out without having to rush back to set up. OR we could go out to dinner or make normal time plans with friends. I LOVE that it's over and done with. Last night Matt and I were able to go to Walmart (I know, I know), and to get chocolate milkshakes at Sonic. (I LOVE me some Sonic chocolate milkshake. No, Cookout is not better - I don't care what anybody says... they have a funny aftertaste.)

Anyway, freedom to go and do is so nice. And I feel so much less stressed.

And now, back to Walmart. Ok, so besides just being overcrowded and kind of dirty feeling (I'm such a snob. I know how that sounds), I hate, hate, hate that the carts are all broken. That's my biggest thing about Walmart. Armed with hand sanitizer and disinfectant wipes, I could totally overlook everything else. But man, we went through three carts yesterday (cleaning each one as we went, daggoneit) before we finally just went with the third and gave up. And it was the WORST one. Jonah was bumping and shaking all the way through the store so badly, I was sure he wouldn't be able to fall asleep (although he did). But the cart was so loud and shaky, it was almost embarrassing. And I don't embarrass easily. (Except last night at Walmart when I was trying to get a box of Fudge Rounds off the top shelf, and it was really high up. And this fit jock looking guy was standing behind me, so I turned and asked if he could help me. He said, "You want the big box?" And I said, "Um, yeah. Of course. Is there any other kind?" And he just looked at me and got the box down. That was a little embarrassing.) But anyway, I could tolerate Walmart if it weren't for the stupid cart situation. SO. ANNOYING. You know how they make those reusable shopping bags? I want someone to make a fold up reusable cart you can take with you. That way, I'll always know I'm going to get a cart that works and won't wake the slumbering beast Jonah, and I'll know that the only germs on that cart are mine. And, well, I have some pretty great germs, if I do say so myself.

Just finished a Chick-fil-A lunch and wondering what to do with my afternoon, you know since I don't have to set up for dressing change and all. Did I mention I don't have to set up for dressing change?

Speaking of Chick-fil-A, July 10th is dress up like a cow and get free chicken day. So in the spirit of things, I have the plan to dress Jonah up like a cow: white bandages, smack on a white diaper, tape on some black spots. VOILA! Cow. Too bad we'll be at the beach. I'll have to scout out the closest Chick-fil-A. True, it's exploiting my own flesh and blood for free food, but it is, after all, Chick-fil-A. And although you guys would never support Jonah exploitation, if aforementioned cow escapades do occur, I'll be sure to take pictures. Not that you guys would ever support that.

Ok, well, off to do something OTHER than set up for dressing change. Oh wow. So many choices. Laundry. Dishes. Diaper stripping. Sweet tea making. Watching Roseanne. The possibilities are endless.

to the BEST dad

Hey Daddy. It's me, Jonah.

I just wanted to steal Mama's computer for a second to tell you how much I love you. You're really special, and I hope you know how much I love you even though I can't really talk yet. All that arm slinging and kicking I do to work out a tiny little coo is to tell you I love you. I think you understand me, but just in case.

On Friday I laughed - really laughed - for the first time, and guess what? It was at you. You were going Ah-Ah-Ah-CHOO, and even though mommy's done it a thousand times, you, daddy, are just HILARIOUS. You make my whole face light up. I'm so happy when you are around.

I love how you sing to me, and I especially like it when you sing the Star Wars theme. I love when you rock me to sleep, and hold me up on your chest so I can look around. You always help mommy so much, and I like our middle of the night time when you're feeding me. You are so patient and kind, and even when mom is all tired and grumpy, you are so peaceful, and you never get mad at me.

Mommy thinks you are so calm and have such a great attitude. She tells me how strong you are, and how she doesn't think she could get through all of this without you. She says that you give her strength to make it through another day.

You are so great with me, and even though before me you didn't know anything about babies, you would never know. You've jumped in with two feet, and you do such a great job! And let's face it, dad, I'm not the easiest baby ever. But you are amazing.

And even in this world that can be so hard and cruel - in this place that may be hard for me at times - you see me as beautiful and perfect. And even though I will face a lot of pain in this world, you will be always be my safe place to come. You will make me strong and funny and you will teach me to love Jesus. And with you and mommy and Jesus, I'll be okay. And I just want to say thank you - thank you for all you've already done and all you're going to do. Thank you for the man I'll become because of you.

Thank you for loving me with all your heart.

And thank you, God, for preparing the perfect daddy for me. You made us for each other. What a gift you've given me. And God, I'll know how much you love me, because of the way I see my daddy loving me. Of all the great things he will do, showing me your love will be his most important job. And it's one he's really, really good at.

the last few days (with cute pictures)

Last Saturday we went to hang out with our friends, Shawn and Jen, and their cutie, Jude. Jen and I have decided that Jonah and Jude will be best friends, and Matt is already calling them "The J Team." (Now we just have to get them a cool black van). Jude seems very interested in Jonah, and Jonah, well, he seems very interested in Baby Einstein. But soon enough I know they will be good buddies. And BOTH parents like to hang out with BOTH parents, so we're pretty pumped about their arranged friendship. Here are the boys mesmerized by Baby Mozart. They both behaved beautifully, and we plan to get together again really soon.

Here is a shot of our yard sale stuff. We did alright money wise, but after it was all over, Matt and his dad took the rest to Goodwill, and we can now fit the Escape back in the garage - the real point of having the sale. With the hot weather, it was imperative we get the car in the garage, so it won't be so hot when Jonah gets in. We are SO tired. We didn't get in bed til about 1:30 last night, we were up with Jonah from 3:45-4:45, and we had to get up at 6. Tonight will be an early to bed night, even if it means getting up an extra time or two with Jonah. (Although he was mostly on an up-one-time-a night schedule, he's now back to waking us up at 1:30 or 2:00 and then again at 4:30 or 5:00... even if his last feeding of the day is at 10 or 11.)

Don't ask me why Matt looks so grumpy. I'm pretty sure I had just called him down for selling all my really good stuff for hardly anything. That'll teach me to go inside and pump.

Jen and Jude came and hung out with us a couple hours at the yard sale. And then Jude stole Matt's hat.

Matt and I are using some of the money to start a "Tenth Anniversary Trip" fund - the only way we will EVER save money for a tenth anniversary trip. We discussed going back here in Riviera Maya, Mexico, where we spent our honeymoon, but Matt would LOVE to go to Hawaii. I don't care where we go as long as it's tropical (or a cruise), but I'm planning on needing a break in five years... or possibly five minutes.

And on a completely different note, look who's doing a great job with tummy time! He'll enjoy it for five to ten minutes, and then he's all done, but we'll take it. He's got pretty good head control, but we're working on building up his arms. He is delayed in his grabbing/grasping/reaching (obviously), but we'll have to give him some time. He's only had his hands unwrapped for a week, so you can't really blame him. He does try to hold his bottle when he's eating, and he always plays with his fingers. The only rolling over he's doing is from side to back, so I figure he's going to be a little delayed in that too. I'm okay with it though, because once he knows how to roll over, dressing changes are going to be a nightmare.

Off to wash dishes, switch the laundry, wash diapers, feed Jonah, and go to bed... eventually.

yard sale pricing woes and jonah, of course

Man, pricing stuff for a yard sale is tough! I can't stop thinking about how much money I spent on the thing when I bought it... and my books, my precious books. So hard to let them go. I will take it very personally if people try to haggle with my books. Just rip out my soul why don't you?

Matt's gotten slightly carried away with the "what to sell" pile. I've already had to rescue our fire escape ladder, our screen insert for our storm door, and a memory card for my digital camera. We were going through our books the other night, and while I sorted through my books on the bed, Matt was sorting his on the floor and reorganizing the book shelf. I came up with a huge pile to get rid of, but when I handed him my keepers to put back on the shelf, he informed me there was no room. "Where are all the books you are getting rid of?" I asked. "I want to keep all mine," was the response. Um, no. Try again. So he was able to get a small stack together to sell and mine found a place on "his" shelf. And I love my Matt, God bless him, but he's really more of a Sports Illustrated kind of guy than a book man. I think he likes the idea of the books and wants to be a reader, but the odds that he'll actually read them are slim to none. But hey, they look really nice on the shelf, and what if Jonah wants to read them in fifteen years?

We are giving away our extra Bibles for free, but you'll have to pay $3.00 to get our PlayStation South Park game. How 'bout them apples?

I'm excited about pretending I don't speak Spanish, and then fluently bargaining the socks off any Spanish-speakers that come our way. I've been out of the Spanish loop for a while, so I'll be excited to practice.

Kathryn came and helped me price some stuff today, and we've both decided that we collectively suck at coming up with good prices. Our mottos are, "You couldn't get that for a dollar at The Dollar Store," and "I paid ____ for that," and "That would make a great _______ gift." Anyway, I think we're looking for very specific buyers. We've pretty much mapped out their whole life story and the exact reason and motive they will have in order to pay $15 for a pair of shoes. (Just kidding. Sort of.) Anyway, it's hard, but I know the price is really just a suggestion anyway. Let the haggling begin.

I about put a "Make an Offer" sticker on a travel bandaid case just to be funny, but wasn't sure people would get my humor. I also have this big wooden circle decorative thing on a stand, and I was going to write, "Why reinvent the wheel when you could buy this one for $10?" but again with the humor thing. Maybe you just had to be here. I'm funny in my head, at least.

We're going to have a table set up with Jonah's story and some magnets. I don't really care whether we sell any magnets or not, but I am excited about spreading the word about EB. I'm actually looking forward to people's questions. It's supposed to be in the mid 90's here on Saturday, so I don't think Jonah will be making an appearance, but the 7th grade girls at church did a nice trifold presentation for us to put up with the magnets. It's kind of a summary of what EB is on one poster, and then another one with clips from the blog and pictures that tell our family story. I want people to know Jonah and to know about EB whether they buy a magnet or not.

Jonah had an appointment today with the ENT, and he said everything looks really good (just one small place on his tongue that he could see - he didn't scope him again). He says the noisy breathing is probably just from excess secretions (something any baby could deal with), and the stridor when he's sleeping is probably just a floppy airway that he'll outgrow. He's still breathing well, never in distress, always has good coloring. I'm feeling better about things on that front, which is a huge praise. We'll see him again for a check-up in three months. I'm nervous about the GI doctor on Wed. I'm not really sure what they can do for Jonah without going down in there, but hopefully they can give us some feedback on the acid reflux stuff. He's eaten more today, but it's still a lot of fighting to get him to do it. I guess just meeting with the doctor who would make the g-tube decision if it ever came to that scares me. I don't even want that to be in the realm of possibility for Jonah, and it just makes it too real.

Ok, I better run. It's almost 1:00 am, and I'm sure Jonah will wake up as soon as my head hits the pillow. He has a sixth sense about these things. Have I mentioned that he sleeps with his eyes half open? Freaks me out. I guess he knows I'm always coming at his face with a needle as soon as he sacks out. I can't really blame him. But unfortunately, he also uses it offensively as well, making sure to wake up as soon as I shut my eyes or sit down with a plate of food. I know, baby, revenge is sweet. Revenge. Is. Sweet.

jonah update and lack of posts

Hi all. This will be short, because I don't have much time. I just basically wanted to write and say that blog posts this week will likely be few and far between. Matt and I are planning to have a yard sale on Saturday, so any moment Jonah is sleeping or in a catatonic state watching TV reading an educational book on modern medicine, I'm going through closets and reorganizing. If I'm going to do a yard sale, I want to do it right... get all of our crap priceless treasures (seriously, come buy some) OUT OF MY HOUSE.

Jonah update: Jonah's doing well for the most part, although we are still having major feeding inconsistencies. I thought we had the acid reflux under control, but today he is back to his old ways arching his back and crying. He's been really tired today, though, so I'm hoping that's why. It's so frustrating when he's too sleepy to eat, but too hungry to sleep. He finally did pass out for about three hours this afternoon (woot woot!), so that was good. But all I could get him to take when he woke up was three ounces.

The nurse came today, and Jonah weighs 12 lbs 9 oz. That's up five ounces from two weeks ago. We'll take it. :) His hands are doing alright. I'm now wrapping the body of his hand, but leaving his fingers out. We haven't had any more swelling since doing it this way, so for now, that's what we're trying. He is getting about two big blisters on his finger at a time, but they are the clear ones, not the bloody ones, which seem to hurt him more. For the most part, the skin is staying intact after draining them, so that's great news. His thumbs both have raw spots on them now, so they are bandaged back up. I guess, unless he's acting like he's in pain, I'll keep his fingers unwrapped, but just wrap them as needed if he gets raw, exposed skin. I think it's so important that he be able to move his fingers, grab objects, and explore the world. I guess my thought process is that, at some point, he's going to have to get used to it, so I'd rather him go ahead and make the adjustment now before his hands get even more sensitive. Plus, he needs to be able to develop those fine motor skills.

I LOVE feeling his hands on my face or having him hold my finger. I can't explain how amazing it is to see him moving his hands or bringing them together and exploring his fingers. The other day he was giving me a fit not eating, and he kept putting his hands together up at his mouth. I said, "Oh, you're right. We forgot to say the blessing." So we did. And then he ate. WHAT was I thinking?

On a crazy note, the Facebook prayer group for Jonah has 7,997 members. That is amazing. We are continually blown away by the love, prayers, and support that Jonah inspires. He is one amazing child, and you guys are unbelievable. Thank you so much (just in case I haven't said it in a while).

Anyway, I better run. Milk to pump, dressings to change, hubby to hug (he just came in from work).

Please pray specifically for Jonah's feeding inconsistencies, and that the skin on his face and hands will toughen... and of course, for a healing.

cute shots by lauren

My friend, Lauren, got some cute shots of Jonah this weekend you can see here. You may remember Lauren from the day Jonah was born, as she posted some of his first pictures on her blog. I had asked her to come to take pictures of the moments preceeding and just following his birth. She is our go-to photographer and took some great maternity pictures of me during both pregnancies.

It was great to see you, Lauren!

Thanks (again!) for all the great shots!

jonah meets weston

Today we had the honor of meeting Weston and his parents. Weston has Recessive Dystrophic EB. You can find out more about how we became friends with Weston here, but the most important part is this: Weston gave us hope when we didn't have much. When all the doctors were telling us how bad it was, Weston's mom, Dana, sent us pictures of Weston LIVING - bowling, playing ping pong, hanging out with friends. It was exactly what we all needed - optimism, life, hope for Jonah's future.

Weston is up here for some dental work (from Texas!), and they traveled from Chapel Hill today just to see us! We went out to Sagebrush for lunch, and then Weston, his parents, my mom, and Shaina all went bowling. Weston and Shaina are the same age, and Shaina has become friends with both Weston and Dana since Jonah's birth.

We're so happy to have met Weston, and will never, ever forget the great gift he gave us in a time of hopelessness.

Thanks, Weston. Come back soon!

confessions of a Targetholic

My name is Patrice, and I AM a Targetholic.

Yesterday I went to Target with the following things on my list:

- baby wipes

- Gerber Apple Prune juice

- sugar

- Diet Dr. Pepper

- Simple Green (it was in the automotive section)

- travel size hand sanitizer

- shampoo and conditioner

- baby Tylenol

- wall clock

- quart size storage bags

- cat litter

- graduation card for cousin Jake

And I did really well. I got all of the above things, springing for the Target brand (now the Up brand) whenever possible.

In addition to the list, I also bought:

- Two more pairs of mittens for Jonah (not so much for his hands, but for his wee-wee. I've discovered mittens are the perfect wee-wee cover - he can't wiggle it off - when I'm having to change his diaper, lance leg blisters, or redress his legs)

- Hershey's kisses (Granny made me do it)

- Fudge Rounds (a breakfast or late night necessity)

- Splenda (my sweet tea will never be the same)

- a pack of ten brushed silver knobs for the cabinet below the counter downstairs

- deodorant (Let's face it. You can never have too much.)

- sanitizing wipes (so I can stop pouring hand sanitizer all over the cart everywhere I go)

So far, so good...

But then you hit the dollar section, and it's all over.

I got these two really cute tote bags for a dollar each. I thought they would be perfect for carrying stuff down to the beach. It looks like you can just rinse them out and reuse. And the smaller one would be a perfect lunch bag. You know, if I was still working and had even a remote need to carry my lunch in a bag somewhere. Whatever. They were cute and cheap. I was sold.

And finally, my guilty pleasure purchase. This pretty, over-the-shoulder bag for $10.

Let me just say that I am NOT an accessories girl. I typically don't wear jewelry now that I have Jonah for fear of fricting him, but besides my rings and my Gabe necklace, I never really wore it a whole lot before. I like accessories, but I can barely get organized enough to even put on a matching outfit. (When I hadn't found Kelly's blog yet, and only read Angie's, she referred us to Kelly for a scarf tying video demo. WHAT? People wear scarves just for decoration? I'm so behind...) Most of the times I'm in jeans or a knit skirt and a t-shirt. I don't buy shoes, because I'd just rather wear flip flops. And if I've got a black pair and a brown pair, I'm set for the summer. And I don't typically wear bracelets because a) I never dress up fancy enough that I need one and b) I think I have an abnormally small wrist. Bracelets that aren't adjustable always go up to my elbows. And I don't wear necklaces because Jonah will hurt his face if he rubs against them.

But I love me a cute bag. Not a purse, but a bag. I still don't typically buy them, but this one was so cute... I couldn't resist. And I have this irrational need to justify my purchases by making a "want" into a "need." So here goes.

"Patrice, you really need this bag. It's really hard to have a purse you have to carry in your hand or one that's always falling off your shoulder or arm. But look at this bag. This bag is an across your body shoulder bag. You won't have to hold it, and it won't slip off your shoulder. And really, you don't need one more thing to have to carry or keep up with. It's hard enough with a huge diaper bag (the one thing I HATE about cloth diapers. They really fill up your diaper bag). Plus, it's only $10. That's cheaper than you and Matt eating at Chick-fil-A. And it's blue, green, and yellow - your favorite colors. Plus, you really need to stop coveting Kathryn's bag, Sarah's bag, Laura's bag (... and so on and so forth). AND, you haven't bought a new bag in probably three years. It's time."

So there you have it, friends. My justification. It's my story, and I'm sticking to it.

My name is Patrice, and I AM a Targetholic.
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In other news, Jonah had a blow out poop out his diaper yesterday (just as Matt was on the brink of laying him down to change a wet one) that went all over the floor, but more importantly, all over Matt's shoes and shorts. I missed it (I was in our room pumping), but when I saw the look on his face and heard what happened, I laughed so hard I nearly cried. HILARIOUS. Welcome to my world, honey. Glad you've been inducted.

birthday party pics

Jonah sleeping. He slept the whole way there (45 minutes) and most of the time while we were there.

Jonah's friend, Mason, who every time he sees Jonah, points and says "Baby Jonah."

Maddie, the birthday girl.

My favorite of the day.

Jonah's friend, Miller, who was pretending to be shy.

Jonah's friend, Jude. We get to hang out with him and his awesome parents on Saturday night.

Jonah... still sleeping...

Our family (still loving that word)... with Jonah... still sleeping...