good appointment

Jonah's doctor's appointment went well today. The doctor decided not to do the blood draw yet (the geneticist appointment is not until September), so that was good. He got three shots in his upper thighs, but besides crying a little when they went in, he quickly recovered.

His height, weight, and head size are all about in the 25th percentile. She's happy about his growth. Developmentally (smiling, laughing, cooing), she said he is a little behind, but that is typical for hospital babies... especially one with as much going on as he has. He'll smile every once in a while, but it is definitely not a regular occurrence (except in his dreams.) He's certainly very aware of people and voices and will track objects, but as far as expression, he's a little behind. She didn't seem too concerned, and says that should pick up in the next couple weeks.

I know his startle stuff is not from his Morphine. He only gets it once a night (an hour and a half before dressing change), and because of his weight now, it's not a mega-dose or anything. Plus, when all of this was going on, the Morphine had long been out of his system. As far as the anonymous commenter who said for me to get him off of Morphine NOW and acted like I was an idiot for not making the connection... We are slowly weaning him off over time (you can't take him off NOW), and when you have blisters all over your body and are getting nightly dressing changes at two months of age, then we'll talk about pain control... that is, if I knew who you were. I want to get him off as much as anyone. I am his mom after all. Once again, it's a hard choice knowing what's right for Jonah, and we're only trying to do the best we can. It's always a lose-lose with him, and if he stays on Morphine a little longer and weighs out of his dose and that controls his pain and gradually weans him (instead of making him go through withdrawal), that's what we'll do. As far as the vaccines, I'm not going to delay vaccinations for a child who is extremely susceptible to infection... infection that could easily kill him. I'll take my chances with shots. Again, we're just trying to do what's best.

Anyway, back to the startle, the doctor didn't seem concerned, and said it could just be an acid reflux or gas pain. He hasn't done it anymore since yesterday. Thanks to those of you who said it's normal. Reassuring. Encouraging. Thank you.

Matt and I are going out to dinner together tonight while our moms and his dad do drug administration, bath time, and supply set-up for us. That way, we can come in right at 8:00 and get started. Matt gets home around 5:30, so hopefully we'll get about a two hour date. I'm excited, and feel like we definitely need the time out, alone, and together. Although our relationship is strong, anything like this is stressful and takes a toll, and I'm happy to have the chance to hang out a little.

Thanks for praying for Jonah's doctor's appointment. We'll see how many blisters it all caused, but for now, it seems it all went as well as possible. And guess what? For being such a big boy at the doctor's office, he got a Cookout cheeseburger for lunch. Oh wait. That was me.

a special gift

So I got a special gift today. A massage! My friend Gina (who is staying with me today) had a masseuse come. (I just had to look up how to spell masseuse because this is SO out of my league... seriously, I've only had my nails done three times in my life.) She did my back and shoulders, and it was AWESOME! She said, "You really have a lot of stress and tension up here." Ya think? :) I could feel her moving knots around in my back - weird. Anyway, it was gloriously wonderful, and I'm thankful to her, to Gina, and to God for it. Amazing how it has lifted my spirits. I wanted to take pictures, but it was a little difficult seeing how I was getting a massage and all. Did I mention I got a massage?

Jonah has eaten really well in the last 24 hours (21.5 ounces to be exact!), so thank you so much for praying. Now if we could just work on consistency - rather than him eating like that today and then taking only 14 tomorrow.

He stayed awake all during his bandage change last night. He literally fought sleep the whole two hours, and then was wide awake and happy for a good 30 minutes afterwards before giving in. Little stinker. I think he stayed awake just to spite us. He did pretty well considering, but I definitely prefer a sedate baby rather than a thrashing baby when it comes to actually being able to wrap him well. I'm encouraged, though, that he can be awake and not screaming. I hope that's the case once he's not on morphine anymore. I'm eager for and terrified of that day all at the same time. Once we've moved everything downstairs, I'd like to get a TV and DVD player set up within his eyesight, so we can try some baby Einstein videos. Right now, we're sticking to some CD's (thanks to you guys) and Pandora. Pandora is right up there with Target on my list. We're hoping the basement will be finished within the next two weeks. WOO-HOO!

He cooed for the first time last night. No, not at me. But it was at daddy (the only acceptable alternative when it comes to firsts). I try to take video, but he seems to stop whatever cute thing it is the second I turn on the camera. Plus, any time I try to upload a video to blogger, I can leave it all day, and it still won't upload. The only way I've found to do it is to load it to youtube and then embed the video in my blog (which is EXTREMELY time consuming). I don't know what the deal is. I'm not very savvy.

Jonah has his two month check-up tomorrow. (Yes, he turned two months on Monday. No, I didn't take any pictures or blog about it. Yes, I regret it.) He will have to get shots and will have to have 5-10 cc's of blood drawn (that's a lot for a baby) for the genetic testing the geneticist has requested. I'm very sad about all of it, and if Matt had more PTO left, he would be going and not me. I will cry, I'm pretty sure. In addition to the normal anxiety of all that, I'll have to unwrap and wrap his upper thighs as well as his arms while we're there... part of that AFTER shots and blood draws without pain meds. Good times. Matt's mom will be going with me, so at least I won't be going through it alone.

He's been doing this crazy maniacal cry and startle today. He'll be lying on the changing table or in my arms perfectly content, and then, all of a sudden, without warning, he startles, gets this crazy scared look in his eyes, sticks his arms and legs straight out, and screams hysterically. I have to put my face right in his face and talk him down from it (which takes several minutes). It's really strange, and it's not caused (as far as I can tell) by external circumstances. I don't know what it is that's scaring him. It's hard to see that look in his eyes, though. He seems so scared.

As always, thanks for all your prayers and for praying for me when I have a hard time finding the words. I'm feeling much more uplifted and rejuvenated today. I miss my intimate relationship with the Father, and I want so badly to be on my way back. Today I've felt closer than I have in a long time, and I'm excited to have Him carry me back. Now I just have to stop kicking and screaming to get down and hang on for dear life. And with Him, it is a dear life.

Today's shout-outs:
- Gina - for sending Terre to give me a massage. Did I mention I got a massage?
- Nurse Brian from the pediatrician's office for taking Jonah's morphine prescription to the pharmacy (they wouldn't accept it from the doctor's office over the phone) because I couldn't leave to go get it from the office and take it myself. Above and beyond.
- Jason and Jennifer - for bringing us dinner tonight from El Maguey (the BEST Mexican restaurant in the whole world - trust me). I could buy their sweet tea by the gallon (si lo permitía, pero no (sigh)… así es la vida)

jonah update

UPDATE - Thank you for your offers of breast milk storage bags. If you have extras that you're not going to use, I would love to have them. You can send them to our PO Box (right side bar). Packages are okay as they put them in a locker if they are too big and then put the key to the locker in your box. Anyhoo, just make sure to put Matt's name and not mine. I never signed for the PO Box, so technically it won't get to us if it has just my name (although I'm pretty sure that's a load of poop... better to be safe than sorry, right?) And I'll definitely keep my eye out for the cheaper ones next time or try the ice tray thing. Clever. Very clever.

I have not gone over the edge, although a couple times the last couple days, I felt myself teetering. I know that yesterday was a bad day not to post after my not-so-positive post on Sunday, but it was a long day, I was tired, and I figured a good mediocre night's sleep was probably the best medicine.

Jonah's breathing and eating have improved, although I still don't think he is eating enough. I think he should be eating at least three ounces every three hours, and although he sometimes drinks a full three, there are many times he won't take much over two. His weight is good (he weighed 10 lbs 3 oz when home health came yesterday), but I just worry about all the extra calories he needs to resist infection, heal, and regenerate new skin. Poundage is not really the issue. I know he's getting enough to stay hydrated, but he just requires so much more than a "typical" baby.

My mom took off work and stayed with me yesterday, Matt's Aunt Patsy is here with me today, my friend Gina from church will be here Wednesday, and then Matt's parents will be here through the weekend. Kim, Andrew, and the kids will be getting into town late Thursday night (although they'll be staying at Granddaddy's), and they'll be here through Sunday as well. I'm glad to be surrounded. I often think of couples or even single mom's who have to endure this cruel disease and the hard work it takes to care for a child with EB who do not have the extensive support network and awesome family and friends we do. I don't know how they do it. We are so blessed. And it's pretty easy to feel isolated even though I am surrounded, so I can't even imagine how lonely it would be if you truly were on your own.

Thank you for all your beautiful comments of love and support. They have encouraged me, although I still don't think I'm back to my normal self... hopefully I'm on the way. I appreciate your comments about anti-depressants, and it's definitely something I am considering. Maybe that's too personal to post to the whole world, but I'm definitely not one of these people who thinks if you need medicine to help you, there's something wrong with you. If I need help, I need help. I just want to keep an eye on it, and not rush into medicating myself to deal. If the isolated day lows turn into majority day lows, I'm all about getting some help. And I'll follow the same philosophy I did during child birth - BRING ON THE DRUGS.

It's crazy how you can love your kid so much, appreciate his life and the fact that he's here breathing and beautiful, be more thankful for him than anything, and yet still feel so frustrated, exhausted and completely overwhelmed at the same time. But I'm pretty sure that's an ANY new mom thing and not just an EB thing. Although I know the struggles of caring for an EB baby definitely magnify all of it.

Things are discouraging on the blister front. They weren't kidding about heat and humidity being bad for breaking down the skin. Jonah has new blisters on his face, hands, and feet. His two worst ones are on the front upper thigh of his right leg and under his right armpit. Those two are the kind that grow, and they've just kind of taken over. The one on his thigh wraps almost all the way around, and the one on his armpit covers it, his upper arm, and is wrapping around to his back and in the front to his chest. They are impossible to wrap and protect. It's so frustrating. He cried during his bath last night and when I was wrapping that arm and leg. Often times, I don't think the small ones cause him a whole lot of pain, but these (now large patches of raw skin) are definitely hurting him. It breaks my heart.

Continue to pray for him as we transition into hot weather. I hope once his body gets used to the change, it might adapt a little, but I'm not sure that's how it works. We may be in for a VERY long summer.

Switching gears...

Can you store breast milk in regular freezer bags? These Medela bags cost $20 for a box of 50 (Sorry, Debbie. I had no idea.), and I'm going through a lot. Ideas?

And because I try to mask my Yikes-I-just-totally-exposed-myself posts with a little humor -
The other night my breast pump was saying, "Pay up. Pay up. Pay up." This definitely confuses me since I thought my pump and I had settled up on all our bets a couple weeks ago. I think I'm getting played. Stupid pump.

prayer request

Please pray for Jonah. He is extremely congested and has dried up boogers way in the back of his nose that I can't safely reach. He's really having to work hard to breathe and can't eat because of it. This is on top of the fact that he's stopped eating as well over the last couple days. I think he's supposed to be taking 17-18 ounces minimum in a 24 hour period, and the last two days, he's only eaten about 14 each day... and this was BEFORE all this crazy congestion stuff (JEB pretty much affects any of his mucous lined surfaces). I've tried a cool mist vaporizer, a hot steamy bathroom and saline drops. I can't suction him because it will cause blisters. I don't know what else to do.

When I try to pray about it, it goes a little something like this, "God you can just snap your fingers and take his congestion away so he can eat. Throw him a freakin' bone for once."

See? So I need help.

I'm feeling very angry and negative these last couple days. Mad for Jonah. Mad for us. Mad that I can't go out to lunch with my friends, mad that I'm probably going to have to give up my job, mad that we can't go to a night movie or out to dinner. But mostly, I'm mad for Jonah - that he'll have to be in pain and struggle his whole life. That people may look at him and think he's gross or contagious or unclean. Mad that I can't make people be friends with him or make girls think he's attractive. So scared he might hate his life.

I know this is entirely negative and directly from Satan, but it's how I currently feel. I'm mad and on the verge of depressed some days.

And now he can't eat. Enough already. That's enough.

a day of firsts

Gabe's day (Wednesday) held many firsts for Jonah. Here they are in pictures.

Jonah's first time wearing pants. His diaper is so big and his legs are completely bandaged, so pants don't seem to be a problem... except that it's hot here now, so they're a little too warm.

Jeannie (Kathryn's mom) made Jonah some satin-lined shirts with no sleeves (I was worried about seams under his arm pits) that he can wear. It's a little redneck, muscle-tee for my taste, but you do what you gotta do. He needs some color in his life.

That's right, people... Jonah's first trip to Target! SO. MUCH. FUN. He slept through the entire thing, but I'm sure we'll make many more trips.

Jonah's first Target purchase. A plug-in bottle warmer for the car. This and my hands-free pumping bustier (Thanks, Elaine) may be the greatest inventions EVAH. I may even love them more than my nav system I got for Christmas, and I LOVE my nav system, so that's saying a lot.

This cashier looked at me really funny as I documented our time in line. I don't know what's so strange about taking 10 pictures of your baby making his first Target purchase. Monumental.

Jonah's first in-the-car bottle.

Jonah's first in-the-back-of-the-car diaper change. Please excuse all our crap.

And finally, Jonah's first bath.

Wait, what did you say?

Wait. Wait. You're going to do what?

WHAT?

Seriously though, Jonah DIGS the bath. He cries when you take him OUT. We tried last night with his leg bandages off, but he had new blisters on his feet when we did dressing change tonight. I think we could still do it if we wrap his feet and legs separately, and leave his feet wrapped. It's all trial and error. So I can get his torso, head, and face really clean, but still have to do a sponge bath for his limbs.

So fresh and so clean clean.

fundraiser for jonah

So, you wanna be a part of something really cool (if I do say so myself... and I do)?

To help raise funds for Jonah's care AND to support EB research, a few of our family members have come up with a great idea. Buy clicking on the BUY NOW button on my right-hand side bar, you can buy one of these awesome magnets (that my brother designed, thankyouverymuch) for your car or fridge or forehead... whatever.

Don't you just love it??? (But please, people, don't describe it as Carolina blue or Matt might not purchase one... We'll just say it's Jonah blue.)

They cost $10, and 10% of the net proceeds will go to DebRA (Dystrophic Epidermolysis Bullosa Research Association of America. DEBRA is the only national non-profit organization dedicated to both promoting research to find new treatments and a cure for Epidermolysis Bullosa (EB) and providing information and support for people with EB and their families. Check out debra.org to find out more.) The rest of the proceeds will go directly to help with Jonah's care, medical bills, and bandaging supplies.

Anyway, if you'd like a rockin' cool magnet and you'd LOVE to help Jonah, just click BUY NOW, and you can purchase one (or more) securely through PayPal.

** Please allow a couple weeks for delivery **

Oh yeah, if you don't want a magnet, but would still like to donate, you can do that by clicking on the DONATE button on my sidebar. All of that money will go directly to Jonah's care.

We're working on a separate page off this blog (if you want to share a link) with all of the above information (and some cute pictures, to boot), but wanted to go ahead and put up a post about it so you can get 'em hot off the presses!

We've also created a flier you can post to let other people know about Jonah and this fundraiser. If you'd be interested in getting the flier to post, please email Matt's Aunt Katherine at stainsofgrass at yahoo dot com, and she'll be glad to send you the pdf file.

As always, more than anything, we covet your prayers, and don't expect a thing. Thank you for your love, support, and continued petition to God the Father on our behalf.

gabe's day

Yesterday ended up being a beautiful day - weather wise and Gabe wise. It was a tearful day for me, but definitely more sweet than bitter. We lugged Jonah around town for about four hours. It was a day of many firsts for him, and I have LOTS (116 to be exact) of great pictures of the day, but I can't fit all of it into one post. So, for now, I'll just post some Gabe related pictures.

We bought three blue balloons and each wrote (I may or may not have helped Jonah with his) a little message to send up to Gabe.

We then drove out to Gardens of Memory, the cemetery (I hate that word) where Gabe is buried. Here are the pictures I took while I was driving. They were just hold up and snap pictures. Don't worry, I didn't use the view finder.

See? I told you it was a beautiful day. After arriving and a quick back-of-the-car diaper change (one of the firsts), we let our balloons go. It may appear as if these balloons flew directly into the trees, but I can assure you that most certainly did not happen. Er... (We also have a balloons flying out of the car accidentally, getting stuck in a really tall tree, Matt having to climb down a steep incline into the woods, putting all his weight on a tree, bending it completely backwards, me putting a screaming Jonah into his car seat in the bright sunshine without wind protection to cut the entangled balloons out of the tree, all to let them go - right back into the trees again - story, but I won't go there.)

At least one of the balloons made it. See? We didn't see the remaining two in the trees, so we're pretending those made it too. It was a funny moment, and I was glad that God blessed us with some ridiculous, this-can't-really-be-happening sort of humor to lighten the day. Humor is kind of our way of dealing with things, so it seemed fitting.

Then we spent some time taking some pictures with Jonah at Gabe's spot. I don't know where the pot of yellow flowers and birthday hat came from. They were there when we arrived. Matt, Jonah, and I added the sunflowers.

Jonah - really excited to be at Gabe's spot in the wind. This was just a short-lived moment of weakness. He recovered quickly.

Daddy and a recovered Jonah at Gabe's spot.

After we left there, we went to Lowes, and I picked out a bird feeder for Gabe's garden. I also got two cool decorative garden stakes. One says "Live" and the other is a butterfly. We're going to put all that out this weekend, and then I'll take some pictures. The flowers are beautiful right now, and BOTH of Gabe's dogwoods survived the winter and are looking great.

And then, after dressing change last night, we had some of Gabe's birthday cake. I want to do balloons and a cake every year, and when Jonah is a little older, I'd like to have a picnic out at Gabe's spot. This year we couldn't do it because of how windy it was. It just wasn't practical with Jonah. I also like the idea of adding something to his garden every year. If I keep adding plants and trees though, we'll never be able to move. I wonder how easy it would be to transplant a whole garden???

Anyway, we enjoyed the day very much, and Jonah did great. It's as if he knew it was a special day. We had a great time as a family (I love that word), and it was a great birthday. I look forward to celebrating every year, especially as Jonah gets old enough to understand what it's all about.

Thank you for praying for us. We felt God's peace and a sense of joy as we spent the day celebrating the life of both our sons. And the great news is - GABE LIVES - Praise God!!!

gabe

My dear, sweet Gabe,

Today is your one year birthday. I honestly can’t believe it’s been a whole year since I finally saw your beautiful face and held you in my arms. I still remember how warm and cuddly you felt, and I miss holding you every minute of every day. We were so excited about having you, our first child. Your name means “devoted to God,” and you are, aren’t you buddy? I wouldn’t call you back here if I could, even though I want to so badly. But I bet you are having such a great time. I can’t wait to see you in Heaven, and I hope you’ll do me the favor of meeting me at the gates. I’ll have waited long enough.


I figure you know everything that’s going on down here, and I want to thank you so much for talking to God and Jesus and asking them to help and heal Jonah. I know you have a hand in all of this, and I honestly don’t think people would be so touched by his story if they didn’t know your story first. It’s actually just one, big story, and it started with you. I know God is doing a big work through both of my boys, and I’m so proud of you for being such a big part of His plan. I don’t know why He chose you, but I’m so honored that He did.


A lot has happened this year. Mommy and Daddy have had a pretty rough go of it, but have also been blessed beyond measure. We’ve grieved you every day, endured the longest eight months of our lives being pregnant with Jonah, and had to quickly come to terms with a different “normal” than what we were expecting with his EB. We know that’s probably what you had to, and we are glad that you never had to feel any pain – that you went straight from mommy’s belly to the arms of Jesus. I imagine every day what you might be doing there – how great it must be – and aching for the day when I can join you. Thank you for showing up at the beach this summer and for the message you sent me through Nana on Mother's Day. I can feel you here with us, and I’m so glad to know you’re still around. I hope we make you proud.


I told Jonah today that he was going to wish for many things in his life – that he was going to want many things to be different – that he was going to think a lot of things were very unfair. But one thing I told him was that daddy and I would always make sure that he never wishes he had a different set of parents. He’ll never think he’s not loved or cared for or adored. I hope you know that we would have loved you (DO LOVE YOU) the very same way. And although I know you are with the best parent ever, I hope we would have come in a close second. I hope you know how much we love you and care about you. We will never, never, never forget you. As long as we have breath to breathe, we will tell your story. You will be the chapter where life started to have real meaning – where we stopped being so selfish and started living for something bigger. You will be the chapter that taught us unconditional love, hope in the midst of terrible sadness, peace that passes all understanding, and living for heaven, in a way we never had before. You may be my most favorite chapter.

I hope you are having fun playing with Kindred, Emory, Audrey Caroline, Luke and so many other babies that have been taken up to Heaven too early. I truly believe each one of you holds a special place in God’s heart , and I smile when I think about you having so many beautiful and PERFECT playmates. Satan never touched any of you. You never had to feel anger or guilt or greed or lust or temptation – any of the things that make this fallen world such a nasty place. You never messed up. You were perfect, unblemished, white as snow. How many of us can say that? And now Jesus tucks you in at night. What a lucky boy you are.

We never got to hear you cry or see you smile. We never got to take you to Church or on a walk or to a Wake game... never got to see the man you’d become. There were so many plans we had for you. But God’s plan was different, and that’s okay. I’ll never understand it. I’ll never like it. But I accept it. People say they’ll take all these questions to Heaven to ask God. But I won’t. I think when I get to Heaven, I won’t have to ask. I’ll just know and understand, and it won’t matter anymore anyway, because we’ll have ETERNITY to hang out. And that’s all I’ll need.

Today, Daddy, Jonah, and I will celebrate your birthday. We’ll celebrate the 37 weeks we had with you, the day the angels carried you to Heaven, the day we finally got to hold you, the day that was the saddest and happiest days of our lives. We’ll go out to your spot, send you some balloons, feed the ducks, work in your garden, tell Jonah all about you. I hope you’ll see us celebrating you, and that it will be just one more thing to add to your happiness. Jonah will always know he has a big brother. He’ll always know your picture. We’ll tell him all about you. I’ll sing him the songs I sang to you.

Thank you for looking down on us. Thank you for asking God to watch over us. Thank you for being our son. I consider myself the most blessed mommy ever. I’ll never forget you, buddy.

Happy First Birthday, sweet baby Gabe. We miss you more than we could ever say. I ache for the day you’ll be in my arms again. And if Jesus comes before I make it home, I hope to see you riding with Him when He returns. I’ll be looking for you. Either way, I’ll see you soon. I can’t wait.

Love,
Mommy

Gabriel Matthew Williams

April 22, 2008

3:11 am

6 lbs 14 oz

20.5 inches

a post not (entirely) about jonah

Katherine "tagged" me to do these quizzes. God bless her. This obligatory daily blogging is killing me, trying to come up with something exciting enough to post EVERY day. I don't know how the blogging pros do it. Thanks for giving me something (anything), Katherine.

8 Things I Am Looking Forward To

1. Going back to church: I sure do miss rockin’ out for Jesus at Pinedale and the awesome fellowship (IN PERSON) of our brothers and sisters in Christ. Can’t wait ‘til Jonah is well enough and on some semblance of a schedule, so we can head back.

2. Jonah sleeping through the night: Although he would maybe do this on his own, I’m WAY too paranoid about him needing to eat more and his high caloric needs to LET him sleep through the night… so maybe this one should read 2. Not being so neurotic.

3. The basement being finished: So excited about doing Jonah’s dressing changes somewhere other than the dining room table… partly for back pain reasons, partly because I’d like to PRETEND we actually eat at our dining room table and need it for other reasons. In reality, we eat on the couch in front of the TV, but don’t tell anybody.

4. The end of this survey: When you’re all of a sudden a stay-at-home mom whose life seems to be taking care of an eating, sleeping, pooping machine who can’t go out much, it’s hard to make any out-of-the-house sort of plans to look forward to. :) I’m boring.

5. Kim, Andrew, and the kids coming: They arrive next Thursday (the 30th) and will be here all weekend. I can’t wait!

6. Taking Jonah to Target: he’s going to love him some Target… or else.

7. Watching a movie: Really, any movie will do. Really. I just want to watch a movie. We’ve had a Netflix movie since before Jonah was born. Oh, the times they are a changin’.

8. Jonah’s first (second, third, fourth, fortieth) birthday, Jonah starting kindergarten, getting baptized, playing sports, going to prom, graduating college, getting married, having kids – pretty much every beautiful milestone we’ll get to witness in his miraculous life.

8 Things I Did Yesterday (Monday)

1. Prayed for poop.

2. Got lots and lots of poop. Seriously, can you guys stop praying for poop now?

3. Contemplated taking a picture of aforementioned poop for my blog. Reconsidered.

4. Sat on my back deck in the beautiful sunshine with my brother and my baby and talked on the phone with my sister-in-law who I hadn’t talked to in a week. Inexcusable.

5. Ordered a small changing table for my bedroom from target.com. (Target.com - the next best thing to the real, live Target)

6. Took this funny picture of my dog.(This is after Jonah finally asleep for the night. Deac LOVES it when Jonah is asleep. If he’s crying too loud, Deac goes to the backdoor and growls until we let him out. He’s pretty pooped by the time the day’s over. Look at him - Poor dog. It’s as if he’s on Morphine and Ativan too.)

7. Watched HGTV – saw lots of cool designs in lots of cool houses that I’ll either a) never be able to afford b) never be creative enough to pull off or c) never have enough energy to plan and carry out. HGTV is the devil.

8. Prayed for Jonah. (This was on Katherine’s, but you can never have too much praying for Jonah. – I mean, in my humble opinion, that is).

8 Things I Wish I Could Do

1. Renovate my bathroom: Knock out the back wall of my house, expand it out onto part of my deck, build a big ol’ honkin’ closet, and make the current closet part of our bathroom. I want a big tub with jets and bubbles. But I want it to be a tub that never gets scummy or requires cleaning. A girl can dream, right? HGTV is the devil.

2. Get more sleep: This one I left from Katherine’s. But I second that emotion.

3. Become a runner: That’s not really true. I just want to say I’m a runner so people would be all impressed with me like I am with people who say they are runners. Really, I just want a runner’s body without all the work and sweating.

4. Go to all of the Spanish speaking countries: I’ve been to Mexico, Argentina, and Nicaragua. Only 18 more to go.

5. Go on another (many more) mission trips: I did a VBS for a week in Nicaragua in the summer of 2000, and I haven’t been able to go on any more. Someday.

6. Play the guitar: That’s it, really. I just wanna play the guitar.

7. Speak Italian and French: Learning languages is addictive. They say once you’ve learned one, it’s easy to learn others. I don’t really know who they are, but they say it, so it must be true.

8. Find a cure for EB: or find someone who could find someone who could find a cure for EB. Still praying for that miracle.

8 Shows I (used to) Watch
Grey’s Anatomy
Private Practice
American Idol
Lost
The Office
Chuck
The Today Show
Sportscenter (but against my will and better judgment)

big blue eyes

Guess who slept through his dressing change until 2:30am (when we woke him up to eat) and then from 3:30am-7:00am (when we woke him up to eat) and then again from 8:15am-10:00am?

He did. Guess who's feeling like a brand new person?

ME!!!

we have poopage

Excuse me for not taking a picture...

He went from whiny, fussy, uncomfortable, red-faced, struggling to...

...almost instantaneously.

Hooray for relief!

jonah's article

Click here to read Jonah's latest article.

(I don't know WHY in the world they posted that last picture of me in the slide show. Yikes.)

pray for poop

Jonah's head is looking much better. Thanks for praying! Keep 'em coming.

Our only problem tonight is sweet boy is very, very constipated. He hasn't pooped since 6:00pm LAST NIGHT. And he's on breast milk (fortified with Similac soy powder). When we were in the hospital, he pooped with almost every feeding. He's on Poly-visol (a multi-vitamin) with iron (EB babies tend to be anemic, so we're being proactive).

Anyway, pray for poop! I'm going to call the pediatrician first thing in the morning. I've looked at some online tips, but don't really feel comfortable doing much of anything til I've cleared it with the doctor. I'll call tomorrow whether or not he poops tonight, but it sure would be great if he would! I know his tummy is KILLING him.

He's still not asleep and hasn't slept in a good while. He's not crying. He just is. Please pray for some poop, and a good ol' night's sleep. He can't be feeling great.

Have you guys ever prayed for poop before?

Also, I didn't mind the SIDS comment at all. It was posed very nicely, and I knew posting the pics it would probably come up. Believe me, it's something I've thought about a lot. It's mainly a warmth thing. He can't wear clothes and doesn't like to be swaddled, so I really don't know what else to do. I don't do stomach for obvious reasons. I don't do back because of acid reflux/spit up reasons. So I lay him on his side and put a blanket up under his arms (arms on the outside), so that if he lifts his arms, he won't lift the blanket up over his face. The BEST thing is the Angel Care monitor we got from Babies R Us which will go off if he hasn't moved (including breathing movements) for 20 seconds. It's the only reason I can sleep at night. Really. I recommend everybody go out and get one. Talk about peace of mind.

Anyway, I said this would be short, so I'll shut-up now. Goodnight.

off to bed

Jonah's dressing change went really well tonight. Thank you for continuing to pray.

Please be in prayer for the back of Jonah's head (hey, you said you like specifics) - that his blisters there will heal quickly and that it will become more durable. It makes it so hard to pick him up, it's hard to bandage and protect from infection, and it hurts him because as much as we'd like to avoid handling him there, it's just impossible.

And now...

We're off to bed.

Sweet dreams.

an ode to granny

There once was a lady named Granny.
Her knack for caring uncanny.
She fed me and snuggled.
She never got muddled,

and always cleaned my fanny.

Granny came and stayed for three weeks.

She accomplished many feats.

The house was a wreck.

She saved mommy's neck.

And when he was scared, she snuggled Deac.

Today she had to go home.

I'm very sad that she's gone.

I hope she comes soon,

and sings me a tune.

I'll ask grandaddy to put her on loan.

Granny helps me in all of her ways.

I love the time that she stays.

But have no fear!

Granny is here

e-ver-y Thursday and Friday.

Thanks for all your help, Granny.

We love you.

Love,

Jonah (and mommy and daddy)

after a hair wash

Jonah tonight after his bath and dressing change... looking a little pooped.
(The new face blisters I was talking about are on his forehead - under the towel).

Look at those little cheeks plumping up - current weight: 9 lbs 10 oz

Eat, Jonah, Eat!! Grow, Jonah, Grow!!!

Thank you, Father.

another day another post

***UPDATE***
The Zout/Oxiclean combo was a no-go. But no worries. At least I ran everything through the dryer again and set those stains EVEN deeper. Grrrr...
*****************************************************************

I'm happy it's Friday. Not that my weekend days are really different from my weekday days, but Matt's around more, and that makes me happy. He has used sooo much vacation time that after next Wednesday (when he takes off for Gabe's one year birthday) and our beach trip we had already planned for this summer (assuming we'll still get to go), he'll only have 2.5 days of vacation left... which is actually great when you think about what he's already had to take off. His work has a very generous PTO policy. He'll just have to stay healthy.

I put on make-up on today, brushed my teeth, and blew-dried blow-dried dried my hair with a hair dryer -thankyouverymuch.

Not a whole lot to report today. It's 72 degrees and sunny, and Jonah and I spent some time out on the back deck. I'm sure we'll be out there again. It gives me the semblance of getting out of the house. It was all going great until he projectile spit up all over me, the chair and the deck. Sweet boy missed his bandages though, so I was very thankful for that.

Think we may have gotten some real smiles today... still too hard to tell.

I'm currently washing my Aquaphor stained clothes. I'm trying a concoction of Oxiclean powder wetted with Zout spray and rubbed in. I'm washing them in warm water (YIKES). We'll see how it goes. If it takes the color out, it's not really a big deal since I'm not wearing them out of the house as it is anyway. Thanks for being considerate of Jonah's clothes, but HE doesn't wear clothes. It's OUR clothes that have grease stains all over them. Matt and I are developing Aquaphor and Non-Aquaphor sides of the closet. If this doesn't work, I'm eager (I mean not exactly eager, but you know what I'm saying) to try the other options you guys recommended.

Oh yeah, I forgot to mention when I was writing about the crazy, incoherent breast milk labels - I also tried to pour the milk from the bottle to the storage bag, totally missed, spilled milk all over myself and the bed, and had to do a middle-of-the-night sheet change. Just what I want to be doing at 3am. Good grief.

They say the newspaper story is on track to run on Monday. I'll let you know if it changes.

Jonah's still eating well, and we were able to skip the midnight feeding last night. It was a good move except I accidentally turned off the alarm clock at 3am. So at 3:30 when he woke up, it was NOT pretty. Homeboy woke up with a vengeance. And as much as I wish I could heat up milk in 10 seconds, it didn't happen. VERY ugly.

We'll be celebrating Gabe's one year birthday on Wednesday. I'd like to do some special things, but am having a hard time coming up with exactly the right thing. It's hard for anything to feel right when he's not here to celebrate with us. I think we'll probably take Jonah and have a picnic out at his spot if it's nice weather. Other than that, I'm not sure... it's such a bittersweet day - mourning the incredible loss, celebrating the day we finally got to see his beautiful face. I miss him every minute of every day - even more now that Jonah is at home, and we're getting to do so many baby things with him. I wish he was here with us but am thankful he rests in the arms of my Savior. I can't believe it's almost been a year.

Please be in prayer for us as we approach the day. I'm not sure yet how we will handle it, but I've teared up several times the last few days just thinking about it. Our hearts are still very much broken.

Also, please be in prayer for Jonah. He's got some new blisters on his face, the back of his head, his shoulder, and his belly. The ones on his belly and shoulder keep refilling and stretching out. He's going to have huge raw spots by the time they're done growing for good. The ones on the back of his head hurt him a lot and make it very hard to pick him up. And the ones on his face just make me sad. His face has looked so great for so long... my hope for him has been that his face would stay clear - superficial though it may sound. It would just make his life easier. I need to not care what people will think and say, but I just know how cruel the world can be. I want them to see what I see. I want them to see Jonah.

jonah - thursday, april 16th

Good morning! I went to bed earlier than usual last night, and may have to make that a habit. Usually I've been staying up until after his midnight feeding (so at least until 1 am), but last night I slept for about an hour and a half and just got back up. I was COMPLETELY out of it at midnight, but this morning, feel like I've had a little more sleep - I wouldn't go so far as to say refreshed - but not half-dead, so that's good.

Speaking of being tired last night...

When I pump, I have to write his name, date, and amount on the storage bags (I fool with all of this just in case we end up in the hospital, I want his milk labeled). But last night, I was so tired, I was writing on them with my eyes closed.

One says - Name line: "Jonah Williams (hope)" Date: 12-15-09

(um... what? Apparently I was having a very optimistic, you'reheidiklum kind of a moment in my sleep...)

The other says - "Jonah" and then on the date line it says "Elastic in work" (???)

I'm really tired.

Jonah is doing well. He's still eating well for the most part, although he'll eat 115 cc one time and only 60 the next. I can't figure him out. If he would start eating more and consistently throughout the day, I'd probably eliminate his midnight feeding (we always have to wake him up for this one since he's still pretty tired from his dressing change and the drugs), and just feed him at 3am and 6am.

He's still having some stridor at night from about 10pm (when we finish his dressing change) to midnight when we wake him up to eat. I don't know what the deal is or what's causing this or why it's only isolated, but it still freaks me out. I went to bed crying last night worried about him. I hope we're not missing anything. When he gets a little older, we may make a trip to Cincinnati just to get a comprehensive look at him from an EB perspective . I'd love for him to be checked out by all these specialist doctors who have EB experience. We do have an appointment with Dr. Morrell in Chapel Hill (a pediatric dermatologist who sees several EB patients and trained under Dr. Fine) in early May, so I'm excited about that. I wouldn't want to travel very far with Jonah before that anyway.

I think Matt's mom and I are going to take Jonah out to Lowes later this afternoon. I need to pick out a light fixture for over his dressing change table they're putting in down in the basement. It will be Jonah's first non-doctor's office outing. I'm nervous and excited, but figure Lowes is a pretty good place to take him - big, open, airy - not many women or children who will be trying to touch him. Why do people think they can just walk up and touch your pregnant belly or your baby? All social code goes out the window. It's so strange. I don't want to have to go mama crazy on some poor, innocent well-wisher. HELLO, the bandages should tell you something. Back off, woman!!!

This may be my only post for the day, especially if I try to get in bed before 1am.

Please continue to be in prayer for Jonah's stridor issues. Please pray that it's nothing or that if it is something, it will be obvious, and we will catch it in plenty of time.

All I keep thinking is 47%... I want to hear the Voice of Truth, not the voice of the deceiver.

A few pictures Leigh took while she was here. Leigh is also the one who started the Facebook prayer group page. Thanks for all your hard work, Leigh. We appreciate it so much!

Still me with no make-up...

home again, home again

A couple more pictures from our time at the hospital.

The following picture pretty much speaks to how tired we are these days. The rigor of new parenthood coupled with giving meds, pumping, mixing milk, dressing changes, time in the hospital and just worrying in general lead to UTTER EXHAUSTION. We sleep when and how we can.

We're home now. Our friends Rob and Leigh are visiting from Greenville, and it was so nice to have a happy day to come home to. I slept for about 2 1/2 hours this afternoon. Napping is glorious - I just wish I got to do more of it. The running joke is that if we need Jonah to wake up to eat, I just go lie down in bed and pretend I'm trying to sleep - that wakes him right up.

Things I'm thankful for tonight -

- Jesus and the gift of salvation and ultimate hope

- Answered prayers

- JONAH

- Jonah's healthy airway
- Beautiful friends and family - a huge support network

- Blog readers (aka PRAYER WARRIORS)

- HGTV (which has good shows all night except between 4-6am, when it's lacking which is unfortunate considering this directly coincides with Jonah's play time. Sabrina, I blame you for this. I don't feel like reading Bible stories in the middle of the night like some night nurses I know)
- Still Target