Tuesday, June 30, 2009
still no blisters
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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.
Monday, June 29, 2009
prayer request
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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.
Sunday, June 28, 2009
jonah's first walk
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.
Saturday, June 27, 2009
four months today
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'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.
I especially like getting kisses from Mom and Dad. Don't be fooled by my crazy eyes. Daddy kisses are delicious.
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, 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.
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.
Friday, June 26, 2009
jewels for jonah
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.)
Wednesday, June 24, 2009
GI appt
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
So good night. I can't wait to
(But just in case you didn't know - he's totally worth it.)
Tuesday, June 23, 2009
something other than dressing change
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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
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
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.
Sunday, June 21, 2009
to the BEST dad
Saturday, June 20, 2009
the last few days (with cute pictures)
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.)
Friday, June 19, 2009
yard sale pricing woes and jonah, of course
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.
Tuesday, June 16, 2009
jonah update and lack of posts
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.
Sunday, June 14, 2009
cute shots by lauren
It was great to see you, Lauren!
Thanks (again!) for all the great shots!
jonah meets weston
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!
Friday, June 12, 2009
confessions of a Targetholic
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.
Thursday, June 11, 2009
birthday party pics
Wednesday, June 10, 2009
el problema de las manos, parte dos
Trials two and three have failed on the diapers. I tried Simple Green and Country Save tonight, as well as boiling hot water, but it may take several treatments. I am not giving up hope. I'm excited to write down your suggestions from the comments, and try things until something works.
I have great photos from the party Saturday (not so much of Jonah as he slept through the entire thing), but some great ones of birthday girl, Maddie, and my ever-so-talented-cloth-diaper-making-friend Jen's little boy, Jude. But I'm way too tired to get them off the camera and post them tonight. Sorry. I know you peeps love you some cute photos... and I'm no photographer or anything, but let me just say, I'm patting myself on the back over these. Too cute.
Jonah's hands were in decent shape when we unwrapped them tonight. He had a few blisters that needed to be (re)drained, but the swelling had gone down. So tonight I've wrapped the body of his hands, but left his fingers out. We'll see how that goes. I know ideally it would be best to wrap his fingers individually (a necessity with RDEB, but not with JEB) to protect them best yet still give him full use, but I can barely get him to hold still when I'm wrapping just the body of his hand. I can watch videos til the cows come home, and that's still not going to help me wrap his hands. Homeboy is strong. And ill. And doesn't like to be messed with. You have a very small window of opportunity when doing anything to his hands.
And oh man, I forgot to say that JONAH IS COMPLETELY OFF OF BOTH ATIVAN AND MORPHINE. And has been for about a week. I can't believe I've forgotten to mention it before now, but this is such an answered prayer and blessing that he is off those mega-kick-butt drugs. Now we're controlling his pain with Tylenol only when needed. And besides being the fuss box he's always been (the pictures only make him appear to be a laid back baby), he's handling things just fine.
Ok, my eyes are closing as I type these last words, and I'm sufficiently
Tuesday, June 9, 2009
jonah the giant
3:00am Update: Jonah's hands are swollen, but so far, only a few small blisters. We drained what we could before he went to sleep around 11, and it doesn't seem like there are many new ones yet (although I'm sure he's hurt himself more, because he's been thrashing around since he woke up just now.) Although there aren't lots of blisters, I can tell he hurts more than usual. He won't eat, and as I pump, he's just crying and crying. I just gave him more Tylenol and some Benadryl (to help the swelling?... a long shot) Please, if you happen to be up, pray for Jonah to be able to eat or to find some relief in sleep. Please continue to pray for the condition of his hands - that the swelling would go down, and that the blisters would continue to be limited. I've been pleasantly surprised so far that there are so few... although the swelling concerns me. If he continues to be in pain/won't eat/blisters badly from the current thrashing around etc., I'm especially worried about the lag time between Matt going to work at 7:30 and Kathryn getting here around 9:30.
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Jonah and I ventured out today (all by ourselves!) over to the hospital to meet little Miss Salem in person. I couldn't believe how tiny she was, and how light she felt in my arms. I could have sworn she was a four pound baby, but nope - she weighs 6 lbs 13 oz. Bigger than Jonah when he was born! I don't remember him being that small. Tenth percentile my foot! This kid's huge! (The pictures don't even do it justice. He looked like he could have eaten her. And he may or may not have continually smacked her in the face with his boxing gloves. I couldn't rightly say.)
I don't have a lot to write about tonight, but I do have a prayer request. We left Jonah's hands unwrapped tonight, and I'm terrified. He swings his hands and arms around so much, I'm so afraid it's going to be a disaster. It makes me queasy to even think about the blisters. Please be in prayer specifically tonight for Jonah's hands - that the blisters will be small and/or that there will only be a few - that it won't be as bad as it was after we tried the mitten a while back. His hand swelled and there were blisters all the way across his knuckles, up each finger, and you couldn't even see his thumb because it was completely encased with a huge blister. Please pray that his skin has/will toughen up and that even if it is bad this first time, that it will get better as we go along. And please pray for me - I'm so scared that it's going to be awful. Please pray for my peace of mind.
I know that's many specifics to ask for, but as always, we appreciate you so much keeping Jonah (and us!) in your prayers.
Monday, June 8, 2009
i think we're alone now
So far, he's been great. He woke up around 8:15, so I left him in bed to get his meds drawn and heat up his bottle. But then, he fell back asleep, so I had time to take a quick shower and pump before he woke up again. Then, he was content in his vibrating chair (remember?... the one I've wanted him to like, but he hasn't until now). After a diaper change, he ate 125 cc's (a smidge over four ounces) in only TWENTY MINUTES. I'm so excited. Not a hint of acid reflux (it's been much better for the last three days or so, but I've been afraid to say it out loud... that maybe we're getting things under control). I then did a patch up job on one of his arms, lanced a couple blisters, and now I've laid him down in his bed hoping he'll fall asleep. He's acting so tired, but when I hold him, he rubs his face back and forth on my chest, and I know that's causing new blisters. I don't hear him anymore, so I think he's drifted off. Man, it's so great to feel like I can handle this by myself. I can't tell you how frustrating it is to know you can't even take care of your own child alone. But he's finally, finally getting to a point where he will stay in the swing for more extended periods of time and is content to sit in his vibrating chair in the kitchen while I wash dishes, mix milk, switch over the laundry etc. And wow, if he will keep eating this well without all the crying and fussing, and in less than half the time it was taking... I'll be a new person. We'll be able to go out in public without me having to run out the door as soon as he finishes one feeding (that is, after a diaper change, then peeing through his diaper, then an outfit change, then spitting up, followed by another outfit change etc. and so on and so forth), just to have to feed him again in an hour and a half... in the car. He's sleeping so much better now too. He usually falls asleep around 10:00 and sleeps until 4:30, and then goes back to sleep from around 5:30 to 8:15 or so. Can you tell I'm excited? I feel like I'm finally getting a taste of "normal." Shwoo.
On another much more frustrating note, my FuzziBunz have MAJOR build up from all the Aquaphor I have to use on his legs with every diaper change. When I use a dropper and drop water on them, it immediately beads up and slides right off. They are not absorbent at all. So I've looked on line on how to strip them and am beginning trials. Last night was trial number one.
Trial Number One - red, green, yellow, and orange diapers
1. Sprayed with Green Works (couldn't find the recommended Simple Green) and let sit for 15 minutes.
2. Hot Wash with one scoop of OxiClean.
3. Second hot wash with a little bit of Dawn and a cold rinse with vinegar.
4. Third hot wash with nothing.
5. Hot wash with 1/2 the amount of 7th Generation detergent (recommended), with an extra rinse.
Result: Complete and Utter FAILURE.
Grrrr.... I have ruined ALL of my diapers. They cost $18.00 each. I'm not sure how to get the Aquaphor build up off of them, but he can't wear them without it, and he can't wear disposables because of the tight elastic. Dawn is supposed to get the Aquaphor out, so I've been scrubbing each diaper with some Dawn as I take it off, but then I get detergent build up which also repels. HELP! Sunny, any suggestions? I feel like they may be past the point of no return. Ruined. If it's not one thing, it's something else. Geez.
But, back to my good mood. I guess I better go while he's asleep. Dishes to wash, laundry to fold, diapers to burn. (JUST KIDDING. Maybe.)
My friend, LeeAnn, is in labor with her little girl as I speak. I'm so excited and can't wait to meet her. I know she and Jonah will be great friends. If you have a moment, please say a prayer for LeeAnn. If there's one thing I've learned, it's that childbirth is a complete and total miracle, and nothing is a given. I just want her little one to be here safe and sound. When any of my friends are in labor, I'm just on pins and needles the whole day until I know everything is okay. I'll try to post a picture of her as soon as they get me one. Hopefully Jonah and I can make it over to the hospital after she arrives (tomorrow maybe?). I'm sooooo excited!
Sunday, June 7, 2009
Saturday, June 6, 2009
confessions of a targetholic
Did reading that just hurt your face?
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In other news, I was recognized in public yesterday! (WHAT?) Granny, Jonah, and I went to meet Matt for lunch at Dairi-O in Stanleyville (soooo tasty), and we were waiting on our food, and a lady came up (Hey, Allison) and said, "I recognize you from your blog. Do you think I'm crazy?" Honey, I define crazy so no worries there. And then, she got to meet Jonah (who, unfortunately was way more interested in the fan than any human being on earth at that specific moment, but whatever). It was really neat and crazy and awesome. Jonah's famous!
Today is Maddie's birthday party, and we are very excited. Jonah let us get eight hours of sleep last night (not consecutive), and I'm glad because I bet today will be a loooong day. Totally pumped, but really hoping he cooperates. Granny is going to help with dressing change around 1:00 before she heads back to SC, so that we can have it over and done with and enjoy the party.
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And a few random things -
Someone said a long time ago that they couldn't find the hands-free pumping bustier I have at Target. They had looked everywhere. Sorry to make you search. It's not from Target (GASP!). You can find it at easyexpression.com, and it is the best thing ever. Seriously, if you pump and don't have one, order one today. It will make your life sooooo much easier. How do you ever think I get a post up? A sweet blog reader got mine for me (Thanks, Elaine), and it's wonderful.
Secondly, if you haven't received your magnet yet and think you should've, please contact Matt's Uncle Chris at jonahs(dot)support(dot)group(at)gmail(dot)com. He can help you out. (Kelly in GA - I didn't have an email address or blog to get in touch with you, so just email Chris, and he can let you know the status).
Also, if you are a Wake Forest fan (which, of course, we ALL are), Jonah's magnets now come in black and gold too. I know. I know. Too good to be true. But friends, WE are in the business of making your dreams come true, so there ya go.
And lastly (but certainly not leastly), please check out Jonah's Support Group Blog to see some other beautiful and wonderful kids with EB from other parts of the country who have done us the honor of sending in photos with Jonah's magnet for that blog. Please remember that Jonah is not alone and that EB is a big problem. One of DebRA's slogan's is, "The worst disease you've never heard of." That is so sad. How can people NOT know? How did I NOT know? Please, help us raise awareness about EB (whether you buy a magnet or not), and take a second to go see some other beautiful kids who need your prayer too.
Thursday, June 4, 2009
baby bolte
I have been to Hope's site, and I've left a comment for Kristy. I wasn't going to leave a comment just yet until I knew more what they were dealing with (didn't want to scare them or make them jump to any conclusions). However, when I went and saw how many of you had commented about Jonah, I did leave her a comment. I'll be glad to be there for her however I can, but in the meantime I'm praying that it's not EB or if it is, that's it's a less severe subtype.
Thanks for letting me know. I actually found Waiting For Happy soon after I lost Gabe (I don't remember how), but hadn't been back in a long while (lost it somehow).
Please pray with me for baby Hope.
jonah's announcement
Here it is:

This was designed for me by Heather with Picture It Cards. She does beautiful announcements of any kind, and will custom design whatever you'd like. I know she didn't do this so I'd give her a shout-out on my blog, but it was just such a wonderful gift, and she's just so talented, how could I possibly resist? Thank you so much, Heather. I LOVE IT!
I WILL be using her for my Christmas cards... you know, if I actually send out Christmas cards. The three months late thing might be a problem. Maybe I'll send out Easter cards. If I just start working on them now...
Wednesday, June 3, 2009
cfa continued...
After several people mentioned this video in the comments, I checked it out. Here's a nice tribute to Chick-Fil-A. Very funny. Enjoy!
another random post
So I got eight and a half hours of sleep last night. That's right. Count 'em. Eight and a half. I was asleep by 11, Jonah woke up at 4:30 to eat, ate a full four ounces peacefully (Matt must have the touch. It hasn't happened before or since) while I pumped, was wide awake still at 5:30, but we put him back in bed and turned on his mobile, he fell asleep on his own, and didn't wake up again until 8:30. Pretty amazing. I feel like a new person. He's only slept through the night once, but I consider 11 to 4:30 sleeping through the night enough that it counts. A girl could get used to this.
Except for that one feeding, he's still crying, fussing, and flailing through all his feedings. I'm not eating dairy, but am still giving him old milk. A blog reader wrote and told me that milk proteins and lactose stay in breast milk up to two weeks after you've last had it, so I guess this will be a longer endeavor than first anticipated. I'm going to keep giving him old milk until I'm sure I'm fairly lactose free, and then I'll give him fresh milk to see if it makes a difference. I don't think it's lactose intolerance though. His poops are normal and he's not spitting up a lot. I think it's really bad acid reflux combined with the fact that he's probably got some blisters in his throat. Can you imagine??? He's now on Prevacid twice a day and Zantac three times a day trying to get it under control. He has an appt scheduled with a GI doctor at Brenner's on June 24th. I hate him being on that much medication, but he's in so much pain when he eats. I may try to give him a soy formula bottle later today, just to see if that makes a difference... just in case.
We have two friends, Greg and Monica, who take a date night every Tuesday night. They get a sitter and then head out. Well, they've decided to spend some of their date nights with us, so last night they came over after dressing change. We got take-out Japanese and just hung around the house. Probably not so exciting to them, but SO GREAT to me. Monica and I went to pick up the food, and just those few minutes out on a beautiful summer evening did me so much good. It's been 90 degrees here the last couple days, so Jonah and I have been home bound. It makes for some very long days, and I get really stir-crazy. I'm really dreading official summer and the hot days of July and August. I don't even feel like I can take him indoor places if a feeding is coming up, because of the scene it is. It would draw lots of attention, and I'm just not in the market for lots of attention when we go out in public.
Speaking of Greg and Monica, their daughter, Madison, will be celebrating her first birthday this Saturday, so Jonah will be attending his very first birthday party. It's supposed to be a much cooler day, but they will also have their house open to guests if it's too hot for baby Jonut. Monica and I went through our pregnancies together (when I was pregnant with Gabe), so we've always had a special bond, and I'm so excited to see Maddie turning 1-year-old. I just can't believe it. It will be fun to see her change and grow and to imagine Gabe the same age. Anyway, they're wonderful friends, and I'm so glad we got to hang out last night (social interaction - woot woot!), and we can't wait for the birthday party Saturday. Hopefully Jonah will cooperate. I'd hate to have to leave him behind as an extra special birthday gift. (Just kidding, of course.)
On the magnet front, I have yet to see one as I drive around Kernersville. I'm so excited for the day when I'm driving around and see one on a car of a non-family member. (Beware strangers, I will stop you and give you a hug). I know they're out there. A lady from Jacksonville emailed to let us know she had seen one on another car in Jacksonville. Florida. Crazy. Oh, I've been meaning to tell you to take your magnet off your car before you go through a car wash. We have a certain family member (not to mention any names... Aunt Melanie) who lost hers that way. I would hate for you guys to have to buy a second magnet to replace a car wash casualty. Hmmm... On second thought, make sure you leave your magnet on your car when you go through a car wash. They're really dirty and could use a good scrubbin'. Seriously.
Beach Vacation Countdown: 31 days
Okay, end of random post. The pump has deemed that my "free time" is up. Back to the front lines.
Happy Wednesday. (It is Wednesday, right?)
Tuesday, June 2, 2009
ten reasons i love...
1. They will replace the toy in the kid's meal with ice cream. Suuuh-weet.
2. They say "My pleasure" instead of "You're welcome." I mean anybody can say "You're welcome" without even thinking about it. It takes some real thought, effort, and caring to say "My pleasure."
3. They give Deac doggy treats when we go through the drive-thru.
4. Their sweet tea is PERFECT. (You northerners wouldn't understand. Just take my word for it. Unsweet tea is dead to me. I don't understand the point of its existence.)
5. They have Diet Dr. Pepper. - The Master of all diets.
6. Everything on the menu is good, particularly the 8-piece nuggets (yes, specifically the 8-piece), the cool caesar wrap, and the chicken salad sandwich (although it doesn't come with tomato... WHAT are they thinking?)
7. Their fries are waffle style. Other flimsy, chewy fries pale in comparison. A fry's surface area directly corresponds to its flavor potency. The larger the area, the better the fry.
8. The Polynesian sauce is dang tasty. (True, Polynesian sauce is just a fancy way of saying Sweet and Sour Sauce, but something about the elegant name just makes it taste better.)
9. It is the closest fast food place to my house and within two minutes of Target. A girl just couldn't ask for more.
10. They are closed on Sunday to give employees a day of rest and the opportunity to go to church. (I think this is an awesome idea until it's Sunday, and I'm cravin' me some Chick-Fil-A. Then, not so much.)
Monday, June 1, 2009
jonah's first trick
This video is kind of hard to hear, but basically it's Jonah imitating Matt sticking his tongue in and out and making a funny noise. Obviously Jonah can't make the noise, but he's trying really hard to imitate the action. This is the one thing that makes Jonah laugh out loud. He won't do it often, but when he does, it's because Matt is doing this. I didn't catch any laughs on camera, but did get some really good smiles.



