snow day

On Friday night the snow started about 5:45. This was fairly soon after it started.


This was right before we went to bed. It was falling pretty hard.




Yesterday was super cold and really windy so we didn't venture out. At all. I did take a shower but stayed in Jonah clothes all day and didn't put on makeup. It was awesome.

But today I was ready to get out, so we bundled Jonah up (much to his dismay) and went outside. He was not happy. I think he would have liked being outside but HATED having so many clothes on. I put shoes on him for the first time too (several sizes too big so they wouldn't blister his ankles), and I don't think he was diggin' that either.

After we came in I decided to make Chicken and Rice Soup. And then I had leftover chicken so I decided to make Chicken Tortilla Soup too. I had no idea how to make it so I looked it up on allrecipes.com. It was so good.

Here is the recipe:

Ingredients:
2 skinless, boneless chicken breasts
1/2 teaspoon olive oil
1/2 teaspoon minced garlic
1/4 teaspoon ground cumin
2 (14.5 ounce) cans chicken broth
1 cup frozen corn kernels
1 cup chopped onion
1/2 teaspoon chili powder
1 tablespoon lemon juice
1 cup chunky salsa
8 ounces corn tortilla chips
1/2 cup shredded Monterey Jack cheese (optional)

Directions:
1.In a large pot over medium heat, saute the chicken in the oil for 5 minutes. Add the garlic and cumin and mix well. Then add the broth, corn, onion, chili powder, lemon juice and salsa. Reduce heat to low and simmer for about 20 to 30 minutes.

2.Break up some tortilla chips into individual bowls and pour soup over chips. Top with the Monterey Jack cheese and a little sour cream.

I think I would add a can of black beans if Matt liked beans. I'm actually surprised it didn't call for them. I think that would be tasty.

I think we got about seven to eight inches, but I never heard a final total. Our road hasn't been scraped yet, so the melted slush has refrozen. It's really slick and nobody really knows how to drive in the snow here. Who knows when school will be back in session. If our neighborhood is any indication, it could be a while. It's really pretty but I'm about done being homebound.

***********************************

Operation Jonah Eat is on hold. Today didn't go very well, and the second try of solids made him puke up one of his bottles, so I ended up chickening out and giving him four bottles anyway. I just can't take the 162 to 216 calories (not that I'm counting) away from him until I'm sure he'll eat. I know I can't expect a change after just one day, but I started having my doubts today and changed my mind. I think I'm not going to worry about it right now. I'm going to talk to his pediatrician at our next appointment. Thanks for praying. Maybe pray for more bravery and trust for me. :)

His diaper area is still super rough. Today was another bad day, and he is crying every time he urinates. It's heartbreaking, and there's nothing we can do. I hate it.

operation jonah eat

Aunt Kim sent Jonah a present with Granny.


He was much more interested than he was at Christmas.



He really liked it.

Like, a lot.

****************************************

Jonah's little boy parts did not blister as badly today. I think we only had to drain two. Desitin works well for us and doesn't seem to hurt him, I just don't know how to stop the blisters. But if I knew that, he wouldn't have EB, I guess. Anyway, it's frustrating, and he's still crying when he pees, but hopefully it will get better soon. Thank you for praying.

I'm going to take a risk tomorrow. I'm beginning Operation Jonah Eat. Jonah is fighting his bottles again and is wanting to cut back on his napping (he used to take four very short ones with every feeding. Now he only seems to want two, so eats poorly when he's not tired). And my Mommy gut is telling me that he's not into solids (AT ALL!) because he's too full on high calorie/rice thickened formula. He doesn't like when I take all the rice out, so I've cut it down by half, but between that and the 27 cal formula (normal mix is 20 cal), I honestly think he's just not hungry enough to want to put in the effort to eat anything else. So...

Operation Jonah Eat is in effect. Tomorrow I'm going to try switching to only three bottles instead of four. And I'm going to try to fill in the gaps with solids. Right now I give him bottles at 9, 12:30, 4, and 8. Tomorrow I'd like to try bottles at 9, 2, and 8, and try solids at 12:30 and 6:30. I don't know. I'm worried because I'm concerned he won't compensate, but even if he doesn't, I don't suppose a couple days will do any permanent damage. And I fully understand that formula is LOADED with nutrition and baby food is pretty much void of anything substantial (except yogurt maybe), so this is not so much for nutrition as it is to see if he has any interest when he's hungrier. If he does get interested, I'll look into more nutritious things, but for now, we're just testing the waters.

At this point, I wouldn't even care if he just ate chocolate pudding and ice cream. I so desperately want him to like eating.

Okay, that's it for me. We're watching 500 Days of Summer, and it's hard to type and follow it at the same time because they keep jumping around. I really like it though and am especially diggin' the music.

this and that

Hi Friends.

This will be a short post because it's 10:15 pm and the first time I feel like I've really relaxed all day. I thought it was cold outside just based on how it felt when I opened the back door first thing this morning. Then my friend, Aimee, came over this afternoon and told me it was in the 50's and beautiful so the three of us went on a walk. And then Jonah cried the whole time, we had to cut the walk short, and he had to be carried back. But that's neither here nor there.

We've had an okay day, but Jonah refused to even take his thirty minute nap in bed today, so literally, the only time he has slept today has been in my arms. I've gotten very little done, but did manage to clean the whole kitchen while Matt gave Jonah his last bottle of the night.

Oh, Katie wanted me to let you guys know that as far as items donated, we are good to go for the auction. I think we have ninety some items, which is just amazing (we were originally hoping we'd get twenty!!!). THANK YOU SO MUCH! This is going to be so great. Now we just have to get the word out so there will actually be enough people to bid on all this great stuff! If you'd like to offer a back-up item in case some of the stuff falls through or donate money to help with shipping costs (so 100% of the bid money can go to DebRA), you can email Katie at jonahsebauction@gmail.com.

And before I end this I would just like to ask for prayers for Jonah tonight. His little boy parts are in very rough shape right now. This happens once in a while, but this time they will not stop blistering. Usually the blistering stops after two or three days, but we've been draining three to five blisters a day in that area for probably the last two weeks. It's really hard for it to start healing when the blisters JUST KEEP COMING. Several times today he would be perfectly happy and then would suck in lots of air and just start crying. I'm pretty sure he's crying at least part of the time when he's urinating. I'm keeping Desitin on him with every diaper change hoping to create a barrier, and I'm sure it's helping some, but the raw areas are so widespread right now... I don't know. I just know it hurts him, and I want it to stop.

As always, thanks so much for praying.

I don't know about you guys, but I am so ready for the weekend. Five to eight inches of snow expected here. I could do without that, but a weekend's a weekend, so I'll take it.

eleven months today

Hello World!



Today I turned 11 months old. Mom can’t believe it. She says we’re just one month away from the Celebration of the Century. I have no idea what she’s talking about, but I think I plan to be grumpy that day.

I’m not sure how much I weigh right now since I haven’t been weighed in a while. Last time I weighed 20 lbs. 9 oz., but Mom’s pretty sure I’m weighing more than that now. I’m heavy! I’m getting so big.

I’m too big for my blue chair.

And I'm too big for my swing.

But for some reason Mom keeps putting me in them anyway. Something about I don’t nap and she needs five freakin’ seconds to get some stuff done yadda, yadda, yadda. I don’t really know.

I’ve really come a long way in the last month or so. I’m sitting up really well, although I’m still toppling over when I lean to reach for things that are to the side.

Mom says I may or may not have fallen over as soon as she snapped this picture. And she may or may not have let me fall on my head. She couldn’t rightly say.

She wishes that were the excuse for my hair looking like this…

… but it’s not true. My hair always looks like this, especially in the mornings. I have a double crown in the back and it sure does make my hair do some crazy stuff. And Mom wants to keep it long so it will grow over my bald spots in the back, but it sure is wacky back there. Mom says it’s good that we get bath and dressing change done first thing. It’s still pretty crazy after nap, but not quite as wild.

I’m teething like crazy.

I have two teeth on the top (my second one has just started coming in – VERY crooked) and four on the bottom. You know my Mommy’s busy and distracted because Daddy had to point out my two new bottom ones yesterday, and they’re almost completely through!

Besides Mommy and Daddy, Deac is my best friend.

I think he is the greatest, and every time he pays attention to me or meets us at the top of the stairs I get so excited. I start flapping my arms and kicking my legs like crazy. And I just bust out laughing. Mommy thinks I’m really close to saying “Deac” because I consistently make a “ck” sound when he comes over. She’s always said that she’s pretty sure “Deac” will be my first word. We’ll see. I’m pretty good at proving her wrong.

My favorite shows are Jack’s Big Music Show and, much to Mom’s dismay, Yo Gabba Gabba. When Jack’s comes on and I hear the music, I start smiling so big. Lots of mornings I miss it since we do 7:30 dressing changes a lot so Mom says she might start DVRing it for me. Wow, my very own show on DVR. I’m getting so old.

I’m rolling over from back to tummy and tummy to back now.

I do it all day long. Mommy says she’s so happy I’m out of the “roll on my tummy and then scream about it” stage. I just roll all over the place these days.

I start out like this…

And five seconds later, I'm like this...

I’m really making all sorts of sounds these days, but they’re getting really hard to describe. I’m doing all my normal ma, ba, da, la stuff, but now I’m combining them and putting inflection in my voice. Mom thinks it’s just the cutest thing. I’m very vocal even though I’m not saying words yet. I still refuse to mimic sounds even though I know what the Big People want me to do. Instead, I just look at them like they’re crazy and do as I darn well please. If they want to sound like doofuses, that’s up to them, but don’t expect me to voluntarily repeat it. Who do they think I am?

When I get excited, I kick my legs and flap my arms and it looks like I’m trying to fly. You should see me when my Daddy comes home from work. I go crazy flapping and rocking , bouncing and kicking, and then I start crying until he changes out of his nice clothes and holds me. And Daddy doesn’t complain a bit about having to hold me first thing. Mommy says she knows he waits all day to hold me. It makes us both super happy.

Mom holds me for my morning bottle and nap at 9:15 so I can at least sleep for 45 minutes. If she doesn’t, I immediately wake up and then I am gruuuumpy. For my 12:45 bottle, she takes me up to my room and puts me in bed after I fall asleep. I sleep anywhere from 28 – 32 minutes, and then I’m all done. Sometimes I doze off with my 4:15 bottle, but not always. And if I do, Mom has to hold me again or I wake up and am ill as a hornet. Mom has to do a LOT of sitting around, something she’s not the greatest at. She knows one day she’ll be glad she did all that sitting, holding, and rocking.

But someday she says I’m going to have to learn not to rub my face and to put myself to sleep.

Whaaaat?

Please Mommy...

… that’s silly. You know I like to be held and rocked. AND you know I call the shots around here. Maybe when I move to a big boy bed, you can just come sleep with me. We’ll talk.

I am doing a much better job at sleeping at night though, and I’ll usually sleep three nights in a row and then have a rough night. Mommy thinks it’s funny that most babies start waking up when they are teething, and for me, that’s when I finally learned to sleep through the night… most nights anyway.

It’s been a big month for me, and I’ve changed a lot. Mom and Dad are so proud of me and how I just keep fighting every day. I’m a happy baby considering all the mess I have to go through, and Mom and Dad are so thankful for my fun personality and my resilient attitude. They say that are so excited to see the person I’m becoming. I’m pretty special, they say, and they love me more than they could ever put into words. And even though I can’t say it yet, I love them a lot too. We make each other very happy. Life is good.

a letter to nick jr.

Dear Nick Jr. (formerly known as Noggin but still really known as Noggin because I don't know of one single person who calls it Nick Jr because, let's face it, Noggin is just a cuter name, I'm just sayin'),

(inhales)

I am writing to inform you that very soon I will be putting in a call to Social Services to report the gross parental negligence I have observed by many of the residents of your Nickelodeon Neighborhood.

Let's take, for example, Max and Ruby. After 11 months of observation I have never, EVER seen their parents. As in I'm pretty sure they don't even exist. The children are constantly home alone, only being dropped in upon, every once in a while, by their grandmother. Max, obviously a child two or under seeing as how he can only speak one word at a time, is being cared for by his sister, Ruby, who can't possibly be more than six years old seeing as how she's an idiot. I do not feel this is a good environment for either child and thus will be reporting the Bunny Family to the proper authorities. I am glad that Ruby has her ever-true Bunny Scout Leader to guide her although I don't think the party-hosting skills she is being taught are going to prove very beneficial in the raising of her younger brother.

I am also very concerned about Dora the Abnormally Large Headed Exploradora. Although her parents, Sr. and Sra. Marquez, do appear every now and again, she is often seen out on her own, accompanied only by a whiny monkey. She has faced many a foe (a witch, a troll, a fox) with only her backpack to protect her. And I know she always uses her seatbelt "so she can be safe," but am I mistaken that Dora should still be in a car seat? I am fairly certain she does not meet the eight year / 80 pound requirement. Although I suppose this law may not apply when you are traveling to OUTER SPACE, you know, by yourself.

Lastly, I will be reporting ALL of the neglectful animal parents whose children have found themselves in such peril they've had to call on the Wonder Pets. I feel if you are relying on a guinea pig, a turtle, and a baby duck to rescue your children, you have reached a whole new level of inattention. I'm sorry but if you, as a goose, flew off and left your children to be led south by some classroom pets in a plastic boat, don't you think you should be reported? And don't even get me started on the ladybug's parents who let her play in the Venus Fly Trap or the Mama cow who barely reacted when her baby calf was rescued from a tree (that's right, a tree).

The parents of all the Backyardigans are still under observation, and at this point, there is no reason to suspect negligence on their part. So far, the children have stayed within the confines of their backyard, and at least one parent seems to be home during their playtime, offering a delightful yet nutritious snack at the end of their imaginary adventures.

Please be under advisement that the entire Nickelodeon Junior (if that's your real name) populace is being watched.

Yours Truly,
Patrice Williams

P.S. - And as far as DJ Lance is concerned, the whole Gabba Family is currently under investigation for recreational drug use. Second letter to follow.

griefshare - week one

I'm very tired tonight. Matt watched Jonah yesterday afternoon, and I got to sleep for two hours, and it was glorious. But then I couldn't go to sleep until 12:30 or after (I stopped looking at the clock because I was doing the "If I fall asleep right now, I'll get ____ hours of sleep." It was torturous.) Anyway, I've felt the repercussions of the Sunday Afternoon Nap today, but guess what? It was still worth it. I get the best sleep when I'm napping.

I started a 14 week course called GriefShare at church tonight. It's offered at a couple different churches in our area, but thankfully Pinedale is one of them. A friend and I are doing it together. Matt's keeping Jonah so I can go. I was telling him about it when I got home, and I think it's going to be really good for me. From the time I found out I was pregnant with Jonah, I feel like it's been all about him - worrying about the pregnancy, praying for him, and then after he was born - taking care of him, bandaging him, loving him. And don't get me wrong, I think that's the way it should have been, but when Matt is watching Jonah and I am at GriefShare, I feel like I get to stop, relax, and be sad; sad about everything, but mostly I get to be sad about Gabe. I get to cry and be angry and mourn him. And that is really, really good.

It's also extremely hard and very much a "ripping off the band aid" kind of thing. When we were going around telling our stories, I just told about what happened with Gabe and then about Jonah. I feel like I'm grieving many things - losing Gabe, the loss of "normal," the reality that I'll probably never be pregnant again, having a child that has to suffer. Anyway, I think I'm where I need to be. I think it will be hard, but completely worth it.

On a God Knows What He's Doing note, a lady in our group (of about 12 maybe) came up to me afterwards and said, "You have a blog don't you?" I told her yes, and she said she didn't realize who I was until after I told our story but that she's been reading the blog for a while. We hugged especially tight. It was so neat. Those folks are feeling like family already, and I've literally known them for about two hours.

It's all good. Sad, but good. And a lot tiring. You know how when you cry it just takes you to a new level of tired? Well, I'm there. And it's my night with Jonah, so I'm off to bed. Goodnight.

dedication sunday

Today was Baby Dedication Sunday at church. Wow. It's been a long road to get here. Last year, on this Sunday, we played hooky and stayed in bed. I knew I wouldn't be strong enough to sit through the service, looking at all the beautiful, healthy, alive babies that had been born in 2008. The weight of Gabe's absence would have been overwhelming.

But this morning, this morning, God finally gave us our day.



Mike (Elder and Sunday School Teacher Extraordinaire) said a little more about Jonah than the typical "name, parents, grandparents" info. He had asked me to email him earlier in the week to let him know what we'd like shared. I knew there would be many folks in the audience who either didn't know about Jonah or were guests, so it was important to me that things be explained a little. Anyway, he explained about Gabe dying and then Jonah being born with EB. And when he gave the stat about the mortality rate being 87% in the first year of life and that Jonah would be celebrating his first birthday on February 27th, the place broke out in (what seemed to be, to my mommy heart, thunderous) applause.

And it was beautiful.

(And I cried.)

Peyton took some video for me, but I can't post it because a) I don't know how to post video recorded to a DVD, b) it is long and I would have to use Vimeo, and I haven't had time to figure that out yet, and c) I have a new video camera and haven't figured out how to finalize videos etc. (It sure used to be easier with those huge video cameras and VHS tapes. I really wish I was tech savvy.)

Anyway, it was a great day, and I can't really put into words what it meant to us to finally be up there, with our baby, committing ourselves to raise him up to know and love Jesus. Preacher Bill kept calling us, the parents, "custodians," explaining that our children belong to God, and we are just the temporary caregivers. Part of the commitment we repeated was that we understood that our kids were only ours for a "short while" and ultimately they are God's.

I think we're just a "show the love" filter - loving our babies the best we can so they'll know what a relationship with God can offer, which is infinitely more than the love we can show them. And I want Jonah to always think, "Can anyone possibly love me more than my mom and dad? That's some kind of love."

I love you, sweet Jonah. I'll never forget today for as long as I live. You did great, and your Mommy held it together pretty well too, ya know, considering.

triad smarty mom

I'm the featured Smarty Mom today over on Triad Smarty Pants.

Feel free to hop on over if you have a chance.

Hope everybody is having a good Saturday. I made breakfast this morning - omelets, bacon, and orange sweet rolls (NOT from scratch - who do you think I am?).

Jonah is yelling at me - gotta run!

happy weekend

Besides a couple rough feedings the last couple days, Jonah has been eating better. All of his feedings today went really well - how they were going last week. He hasn't gushed in a couple days again, so I'm hoping we're on an upswing. Jonah's making some new really fun noises and is laughing more and more every day. He's so cute. I just can't get enough. Matt does his last feeding of the day, and when I kiss him goodnight, I just breathe him in. I'm going to miss that baby smell one day. I can't believe he's almost a year old.

His face is looking really rough again. I don't know why some days are so much worse than others. But that will eventually hit an upswing too... one day.

I got a Girls' Night Out last night. It was unbelievably wonderful, and we're planning on doing it once a month. I'm so excited. It's just what I need. It's not that I want to be away from Jonah. It's just nice to have some adult girly interaction. We don't get to go to Sunday School anymore since we have to get dressing change done before church. So I really, really miss these girls. It was so great. Do I sound giddy? I'm giddy.

Here are some photos from the last couple days. True, he's wearing the same outfit in all the photos, but they are from two different days. This outfit didn't make it very long the first day, and I like it.

Today we got a shipment of the Northern Essence Diaper Salve I use on his little bum to keep it from blistering. He enjoyed knocking the containers over so I set them up over and over and over again.

Nothing much is going on around here. It's gotten really cold and crappy these last couple days, so we've been mostly homebound. I'm so glad it's the weekend. Matt and I are watching Grey's and Private Practice tonight since I was out last night, so that makes it feel like Thursday night - which is awesome because it seems like Matt will have to go to work tomorrow, but he won't! Woohoo!

Happy Weekend!

What happens...

... when daddy's in charge.

i'm only going over home

I have been in a funk today but am feeling much better now. I think it's mostly that Jonah is gushing almost daily (although not today, Praise God!) again. I get so discouraged when I think he is over all that or we've found the solution, and then he starts again. It's so frustrating.

But what really gets me is that with each gush, I picture his esophagus blistering. I told you (or maybe I tweeted it) that we've been having to fight a little more to get him to eat this week. Today I think I know why. When he spits up, it's tinged a dark pink/brown. He hasn't eaten any solids today, so I know it's blood. Something's going on down there. I'm praying and hoping that it's just some isolated blistering and that it has drained now for good. But I worry. It's so hard to trust God sometimes. I'm always waiting for the bottom to drop out. I think I feel guilty that Jonah is doing so well. Leah's gone. Tripp is struggling so much. It doesn't make any sense.

As far as what we have been/are going through I'm less of the mentality, "Why Gabe? Why Jonah? Why us?" and more of the mentality, "Why not Jonah? Why not us?" This has nothing to do with how strong I am or my positive (ha!) perspective or anything. (You guys seriously have me all wrong, by the way.) I guess I just feel like I am owed nothing. I kind of think of those words, "I'm just a poor, wayfaring stranger," just trying to survive until I get to go home. And although I LOVE my life with Matt and Jonah, honestly there are many nights I go to bed ready to go home (wishing Matt and Jonah could just go ahead and come on with me, of course). I miss Gabe, and I want to see him.

But we are here for a reason. I can't remember if I've shared this before or not, but from the time I found out I was pregnant with Jonah until the day he was born, Matt and I prayed on our knees for him every night. My recurring prayer was "Let him live, God." Over and over and over again I would pray, "Let him live so he can praise you, Father. Let him live so he can tell his story." I dreamed of him being a missionary (whatever that might mean). And all of these prayers were before we ever even knew there was anything wrong. We had been told that Gabe dying was a fluke; inexplicable; "just one of those things." There was no reason to think that Jonah would be born "unhealthy." But then he came, and it was so bad. And I was sobbing, and Matt had to walk out in that waiting room, face our families, those hopeful eyes and share bad news... again. And nothing was like it was supposed to be. I'm considering sharing some of the photos Lauren took of us that day after we knew something was wrong. I was looking through them the other day, and they are heartbreaking - the fear, sadness, desperation in our faces. Why us?

Why NOT us?

God answered my prayers. Jonah is living. Not only living, but thriving. He's beating the odds, eating, growing, resisting infection. By the statistics, he should not be here right now. But God said, "yes." Jonah has a story to tell. We have a story to tell. We're not done praising. It's not time to go yet.

And I'm glad.

I'm so thankful that (for now at least) he's said yes.

I sing this song to Jonah, but I change the word "mother."

I know dark clouds will gather ‘round me
I know my way is rough and steep
But golden fields lie out before me
Where God’s redeemed shall ever sleep
I’m going there to see my brother
He said he'd meet me when I come
I'm only going over Jordan;
I'm only going over home.

Yep, we're surely going...

But not quite yet.

the giggles

This will be super short. It literally just took us an hour and a half to get Jonah in bed. He had drunk his entire bottle and was asleep in Matt's arms, and PUKED everywhere... literally, like all over the carpet. And then he was very awake and not at all interested in going back to sleep. Then I got him asleep thirty minutes later, put him in bed, and boom - awake. Then I got him back to sleep, and tried to lay him down. Boom. Awake again. Then Matt tried and finally got him settled down. Shwoo.

There was a really sweet moment when I was getting him back to sleep the first time. It's kind of my fault that it took so long, because he finally settled down, closed his eyes, and then he started talking himself to sleep. "Moooo ahhhh ba ba heeeey." I felt the giggles welling up inside of me. "Heeeyy ohhhhhh maaaa da." I couldn't stop them; I burst out laughing and his eyes popped open. And he just broke in to the biggest grin I've ever seen. We just smiled at each other, I laughed harder, he started laughing. It was great. And tiring because it got him pretty riled up. My bad. Sometimes you just can't help it when you get the giggles.

Anyway, I'm off to bed. Sorry (again) for no pictures. I went to take some today, and the battery to my camera was dead.

On a different note, Matt's trying to get connected with a human being on the phone with Verizon to help him get a ringback tone (it's not working like it should), and he keeps yelling, "Ringback tone! Ringback Tone! RingBACK TONE!" to the automated machine. Ahhh. I think I feel the giggles coming on again.

... Maybe I'm just overly tired.

Oh yeah, I forgot to add that Katie has some details and basic info up on the auction site now. You can see it here. And you can email her at jonahsebauction (at) gmail (dot) com if you have any questions or an item to donate. Are you getting excited???

new phones and chicken bones

I made it to Whole Foods today. I asked the lady if they were always that busy in the middle of the day on a Monday, and she said that they were always busy and that it wasn't actually very busy compared to what it sometimes is. Maybe the aisles are narrow? Or the carts are especially big? Or the store is small? I don't know, but it seemed crowded to me. For some reason it made me kind of happy that all those people were trying to eat healthy or organic. Ever since I read this post by Lauren, I have wanted to buy hormone free meat. That thing about the chickens' poor little bones really got to me. I'm no food fanatic by any means, but man, thinking about those chickens has about converted me for good. I know they say "ignorance is bliss," and in some things I probably agree, but I'm definitely wanting to educate myself more about what I'm eating. I'm working up my courage to actually see Food Inc., because I know once I see it, there will be no turning back. And it sucks that you have to pay a butt load to eat decent food. Messed up, I tell ya. Messed up.

I can't wait til Spring when the farmers are all back out at the Farmer's Market. We live within ten minutes of it, and I know Jonah will LOVE strolling around there. And did you know that they have HUGE, beautiful bouquets of flowers for just $10? And they're way prettier than what you can get at the florist. If any boys read this blog (ahem, Matt), take the hint. Girls like pretty flowers... especially pretty flowers that are cheap.

I got a new phone today. Actually, Matt got us new phones today. He's been wanting a touch screen phone for a while now, and Verizon had a really good deal on the Droid Eris. So anyway, new phones. I keep calling the wrong people and have yet to figure out how to find my call history, but I'm sure it will get easier. And don't be expecting a text message from me anytime soon. I'm all thumbs.

And now, what you are all really here for - Jonah was in a pretty good mood most of the day. He enjoyed being out and about this afternoon. And he played a little bette on his own than he has been. I think his favorite toy is the little basketball goal Aunt Sarah got him for Christmas... or maybe it's just that it's just the right height and shape for him to be able to play with on his own. Many of his toys are either too tall or too wide (won't fit between his legs) for him to sit and play with by himself. Anyway, it's nice that he has at least one "action" toy that he can explore a little on his own. He had two gushers today. He puked up his entire 4:30 bottle, but, no worries, I thought, that will just mean he'll be hungry for solids. And he was. So I fed him some vanilla yogurt and a little chicken/sweet potatoes. I then let him try a bite of chocolate pudding, and that made him puke up everything. Again. I'm in a funk tonight because of it. I thought we were out of the woods with all of that. I mean, a couple nights ago when he started again, I thought it was just because we had put the protein in his bottles. But alas, it seems it may be more than that (although I definitely think putting the protein in there is a spew trigger too).

He's slept the past three nights in a row. Will he go for a fourth? I don't think he's ever gone four in a row before.

And I've been meaning to post this for a while, but it's mostly for my EB Peeps so feel free to stop reading here lest I bore you to death. We've gotten the results back for the first two tiers of Jonah's genetic testing. The first tier was to test for the JEB "hot spots" and looked for abnormalities in (on?) lam A3, lam B3, and lam C2. All normal. Tier two was a complete gene analysis of lam B3. Nothing. So then one of the "experts" at the gene testing place wanted to know more about his biopsy results / talk to the geneticist at Baptist etc before proceeding with further testing. So we released those to her, and we've all decided to continue with the normal sequence of testing. He's most certainly JEB (both of his biopsies confirmed this). The next tier, which they've just started, is a complete analysis of lam C2. If they don't find anything, the next will be a complete analysis of collagen 17 (which I think would be best case scenario as it would mean a milder case???). Anyway, the first two tiers of testing are where 70% of JEB kids usually have their mutations/abnormalities. So EB is super rare (we were told eight in a million although I've seen different figures), and JEB is 10% of that (.5 in a million), and Jonah is in the 30th percentile (or less!) of that. I don't even know what that makes him, and I'm just too tired for math. So anyway that's where we stand on that. I'm not really sure what all this will tell us, but at the least, we will already have it all figured out if we ever get to bone marrow transplant (or other treatment) time. And maybe it will tell us more about the severity of his particular case and/or prognosis? I'm just not sure.

Alright, that's it for me tonight. Sorry for no pictures again. Hopefully tomorrow.

this and that

I tweeted last night (on my right side bar) that Jonah had been incredibly fussy yesterday. It was a rough day. Today has been infinitely better. He was back to his old self today, laughing, kicking, shaking his head. Ahhh. That's my Jonah. I feel so much for mommies of colicky babies. I'm not sure I could take it. It really gets to my nerves. But maybe I'd have more patience for it if I didn't have to deal with all this stuff... probably not.

We made it to church this morning. Jonah loved the music and singing, but once again, had very low tolerance for the preaching part. We were able to come back in at the end for the closing songs, though. Matt and I just rotate weeks of who keeps him out in the foyer. I actually don't mind it too much. My friend Monica's baby, Maddie, usually won't stay in the nursery, so a lot of times I get to spend the time chatting with her, and Jonah likes watching Maddie run around. It's win win, really. I don't know if I'll ever be brave enough to leave him in the nursery. It's not that I wouldn't trust the volunteers to handle him correctly, but the idea of the germs make me shudder. Having Jonah has turned me into quite the germaphobe.

We just hung around here this afternoon. Jonah slept for an hour a half this afternoon in his bed. Now if only he would do that when Daddy's not at home. I didn't take a nap, so I'm off to bed myself here in a few minutes. Jonah gushed again tonight, although we didn't put the protein or anything different in his bottle, so I have no idea why. That's three nights in a row now. Frustrating. Anyway, because the gushing woke him up, we didn't get him settled back down and in bed until probably 9:45. He's slept the last two nights all night, so I'm hoping for the same again tonight.

Anyway, sorry the last couple days have been more informative than fun. We just haven't done a whole lot. I didn't go to Whole Foods after all. I mean, it is ALL the way over in Winston. It would have taken a lot more energy than what I had to get over there and shop. Most of the time I hate shopping, for groceries or otherwise. I have to be in just the right mood. Today I just wanted to bum around. And so I did.

Don't miss the SMA video below. It's only a couple minutes long, and it's very powerful. There are many disorders worse than EB... SMA is one of them. Poor babies.

vote to cure SMA, part 2

If you haven't used all your five votes on Facebook for Chase Community Giving and haven't yet voted for The Gwendolyn Strong Foundation, watch this video.



Now will you? Please?

They're currently in sixth place and only the top six get money. The top place vote-getter will receive one MILLION to fund research. Please help these precious babies. It's so easy.

Here's the link to vote:
http://apps.facebook.com/chasecommunitygiving/charities/710566

Thanks :)

vote to cure SMA

I got this from a sweet blog reader, and I also have a bloggy friend whose son died from SMA. Please consider voting on Facebook. Thanks :)

If you are a member of Facebook or know someone who is, please take the chance to do something incredible!

Chase Community Giving is awarding $1 million to one charity and $100,000 to the five runners-up! The Gwendolyn Strong Foundation is working to find a cure for Spinal Muscular Atrophy - and they could use the money!

Fast Facts:

- SMA is the #1 genetic killer of infants under the age of 2
- 50% of those diagnosed will not live to see their 2nd birthday
- kids with SMA lose the ability to sit, stand, walk, talk, eat, swallow, and breathe
- 1 in 40 people is a carrier
- the National Institute of Health says that SMA is the #1 CURABLE disease if given research funding
- right now there is NO cure and NO treatment
- right now SMA is a DEATH SENTENCE

Want to change that? Vote for the Gwendolyn Strong Foundation on the Chase Community Giving app on Facebook! You have five votes to tell the world that you want a CURE for SMA!

Tell your friends and blog contacts - let them know they could be part of a MIRACLE - be part of a CURE - and give these kids a FUTURE!

Here's the link to vote:

http://apps.facebook.com/chasecommunitygiving/charities/710566

the protein problem

Jonah had us up six times last night and had a gusher with tonight's bottle. It was a nice run while it lasted.

The gushing really wasn't his fault though. When he was doing okay with milk and whey protein, we were adding Beneprotein to his bottles. When he started having issues with that, we switched to adding Provide protein, which is not whey based. Problem - it tastes like cherry. So when I was desperate for him to eat and decided on junk-free bottles, the protein got taken out too (I was doing 5 ml in three bottles a day). His nutritionist ran the numbers yesterday based on how many ounces he's taking a day now, and guess what? Not enough protein. So tonight I put the cherry stuff back in there, and BOOM - gusher. Sigh.

He's not getting enough protein to heal and grow, apparently.

So anyway, now she wants me to start Duocal and ProStat 64. Duocal is protein free but adds calories. ProStat 64 is protein but only comes flavored. And how in the world is he supposed to be hungry for solids when he's being pumped full of so many calories? But how can I lower the calories if he's already not getting everything he needs and has finally started gaining weight again? And I would just put the Duocal in solids, but he's decided he's not interested in that again. I just don't know.

Anyway, besides that frustration, we've had a good day. I know maybe it's a lame-o blog post to talk about the weather, but man, it was an AWESOME weather day. Sunny and in the lower 60's. Jonah struggled to eat his first bottle of the day, and it was quite the battle. We did an 11:00 dressing change, another feeding, a 30 minute nap (he's killin' me, people), and then we made a Target run. It was so nice I stood out front with Jonah in the cart and talked on the phone a few minutes. It felt great, and Jonah was loving it. Tonight has been low key, and I'm off to bed. After our rough night last night, I'm exhausted.

No big plans for the weekend. I'm glad. I think it's supposed to be rainy, so I'm fine with not having a lot going on. Hope y'all have a good one.

photo shoot for invitation

checking in

Hello Friends.

Nothing much to report today. I'm actually still in my pajamas, as a matter of fact. Jonah continues to eat like a champ and has gained nine ounces since the week before Christmas. We haven't had him weighed since then. He hasn't had a gusher in a week, and has slept all night for the last three nights.

I, however, have been getting in bed at midnight every night. Don't ask me why. It basically boils down to me being an idiot and spending way too much time watching TV and doing things on the computer instead of sleeping.

So I'm going to bed early tonight. The sleep deprivation is making me grumpy.

Jonah's doing great, and I want to be energized enough to appreciate it. :)

Hope you had a happy Wednesday!

jonah learning to stand

And this one too, just cause it was cute. He has had his tongue out all day.

I'll have to try to get him on video, but his newest thing is shaking his head. He doesn't know that it means "no" but I think he just likes how it feels. It is so funny.

Tonight we were saying things like:

"Do you like Carolina?" (vigorous shaking of the head)

"Do you like the Yankees?" (vigorous shaking of the head)

"Do you love Mommy?" (vigorous shaking of the head)

I'm so unappreciated.

Things are coming together for the party. We got a location nailed down and paid for today. And some other really fun and exciting party things have fallen into place, but I'm keeping them surprises for our party goers. Sorry. Don't worry, I'm pretty sure it will be the most well documented birthday party in the history of birthday parties, so you'll eventually get to see it all.

Next up - invitations. Heather, I'm counting on you. Start thinking County Fair. I'll be in touch.

jonah in a new blue chair

We've had another GREAT day today. Jonah ate over 28 ounces. No luck on the solids today, but I also didn't try very hard. He slept in a little, we missed our 7:30 start time for dressing change, so we didn't start until 11:00 I think. We can start at 7:30 and get done by the time he needs to eat (around 9:00) or we have to wait until he's eaten and had a short (in my arms) nap.

Here is a random photo from yesterday.



A man in Matt's parents' Sunday School class made this rocking chair for Jonah. Thank you so much, Robert! We put Jonah in it for the first time tonight, and he really liked it. You really have to watch him though as he likes to lean forward. Right now it's a high supervision toy, but I know he'll really like sitting in it to watch sports with Dad as he gets bigger.

Please excuse my complete inability to manually focus my camera on this next one. As quick as Jonah moves, it's hard to get it focused and snapped in time. Shaina and I both have problems with our cameras refusing to snap half the time when they are on Automatic Focus. We have Nikon D40's. Has anyone else had this problem? It is incredibly frustrating. I can't tell you how many times I've missed the best smile or greatest shot because the camera will just randomly stop snapping. Grrr.

After Jonah's dressing change today, Matt's mom, Jonah, and I headed back out to Gina's new cafe, Miller's on Main. A couple of you have asked where it is. The address is 4339 South Main Street. It's about a mile from the intersection of Main and Clemmonsville, kind of out in the country. It's a cute little place, and the prices are great! I've enjoyed both meals I've had there so far. The chicken stew is soooo good. (Here's the post I did on NC chicken stew if you are wondering what it is.)

Gina held Jonah the ENTIRE time and walked him all around the restaurant. I got to eat peacefully. Now THAT is service. :)

And then I forgot to leave our waitress (our Pinedale friend, Katelyn) a tip. Yeah, it's bad, I know. I'm in the process of rectifying the situation. Sorry, Katelyn. I totally acknowledge the fact that I am a complete loser, and possibly the worst customer EVAH!

Later this evening Matt's mom and I went to check out a location for Jonah's birthday party. It is the PERFECT place, and I'm just hoping that it's not already booked. We won't know until we can talk to the lady who does the booking sometime in the next couple days. I think I'm going to do a carnival for his birthday. I have all these great ideas, but I'm completely overwhelmed. I know I have lots of great friends who will be willing to help (hint, hint), and I'm sure it will all come together, but right now it feels impossible (games, prizes, crafts, food, decorations... yikes!). I know I'll go overboard and it will probably be ridiculous to some people, but I just want it to be the greatest. I know I shouldn't think this way, but I can't help thinking, "What if this is the only birthday he ever gets? I want it to be so special." But maybe I should just think, "Wow! We never thought he'd make it this far. What a reason to celebrate!" Either way I get to rationalize a big party, and nobody can say anything about it. It comes with the serious illness territory. The mommy gets to go crazy at birthday time. Period.

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I also wanted to mention that Meg and Jeff (Leah's parents) have posted an address where you can send cards if you feel so led. She would like them sent to her parents' house. Here is the address she has posted:

The Turnquists
2853 Shipley Road
Philadelphia PA 19152

She also published a beautiful post today and included one of the last photos of Leah. It is so precious, and I'm so glad that Meg has it. Beautiful Leah.

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I'd also like to ask for prayers tonight for Baby Kessler (high school friends' baby) as he has just been released after being hospitalized with RSV. He is only a month old. And if you could also pray for Matt's baby cousin, Jake, Katherine's youngest, as he also tested positive for RSV today. He was hospitalized twice last year with it, so we are all just praying it's not as severe this time.

Thanks as always.