the last couple of days

Jonah has had a rough couple of days. Yesterday morning, he just woke up mad and pretty much screamed and cried all the way through bath and dressing change. And then it was off to the Pediatrician's Office for his 18 month check-up. NOT FUN. He was inconsolable the majority of the time. He had to get a shot, screamed any time the nurse or doctor touched him, and needed blood work done. There's a list of things he needs checked at least annually, and it's been a good while since he's had any done. We can't adjust his iron, vit c, zinc etc until we know where his levels are now. Anyway, I unwrapped his only good arm, four of us held him down, the vein was ornery, it took five to ten minutes to get any blood, and then the little bit we did get immediately clotted and was useless. It was a disaster and Jonah was hysterical. We didn't try again. He had had enough for one day.

He then came home and took a two hour and 45 minute nap. Max for him these days is about an hour, so I know he was worn out.

When he got up, he finally ate lunch (at 4 pm), and then we went over to our friends' house for dinner. Jonah seemed to be back to his mostly happy but slightly fussy and clingy self, and we had a good time.

Their son, David, is only about a week younger than Jonah. He is super cute!

Micah is a trip!

Elizabeth is IN LOVE with Matt. She is a huge flirt, and I'm concerned for her parents when she's 14. (Look at that vein poppin' out. She was SERIOUS about her crush.)

Don't be fooled. Matt thought she was pretty cute too.

Jonah had fun playing with different toys and hanging out with other kiddos. This is the last photo I took before my camera battery died. He never quite figured this toy out.

But then, this morning, over the monitor, Jonah woke up with a horrible sounding cough. Just out of the blue. It was more like a bark than a cough, and it sounded like it hurt. He just wasn't himself today.

Poor thing. Throughout the day, his breathing got more stuffy and he started to run a low grade fever. I took him back to the pediatrician this afternoon. More screaming fits ensued as she checked his throat and ears and listened to him breathing. She sent us to an imaging office to get xrays of his lungs and trachea. You can imagine how well that went over given the last two days and what Jonah had been put through. We then had to head back over to the Pediatrician's office (it was well after 5:00 by this time) to await the results.

Jonah has Croup and is being treated with a three day dose of steroids. Dr. B was hesitant and just wanted to know for sure before she prescribed them, as she says the steroids suppress his immune system and was worried about his wounds getting infected. But the EB folks I've talked to say the steroids usually help heal the boo boos, so hopefully it will be a good thing all the way around.

But if you feel like praying a few extra prayers for Jonah, you could pray for good rest, longer naps (one hour a day is not enough for him to stay happy and healthy), that he resists infection, and that his inflammation/coughing doesn't cause any blistering in his airway. All the coughing is also causing him to throw up a lot more (three times today), so we're running Pedialyte in his pump tonight instead of water.

While you're praying, I would really appreciate you lifting up my friends, T and J and their families. T is losing her battle with cancer and will be meeting Jesus very soon (most likely within the next week), and my friend J is fading fast after a long battle with ALS. Both of these women have been huge spiritual influences in so many people's lives, and saying they will be greatly missed is a huge understatement. Many hearts will be broken in their passing. But we will also be so happy that soon their suffering will be over, and they can finally be healed and whole, dancing on the Streets of Gold. Please keep their families, especially their husbands and children, in your prayers.

(UPDATE: I just found out that J passed away this afternoon/evening. Please, please lift up her family.)

As always, many, many thanks.

pat the toilet 1-2-3

Jonah discovered the toilet today. Thankfully, he discovered it with the lid closed. He loved the sounds his hands made patting the top.

This may be my favorite photo I've ever taken of him.

He then made his way from the bathroom to the bottom of the stairs.

He made it up the first step...

... but then wanted down.

So, naturally, being the compassionate and understanding mother that I am, I put down my camera, went behind him and took the moment to physically therapize him by making him climb the entire staircase. He was ticked but he did great, and he was so, so proud of himself when he made it to the top. Totally worth it!

We had a nice day today. We made it to church and then I went to Whole Foods for some full fat, high protein yogurt, and the rest of the time, we've just been hanging around the house. Matt had his Fantasy Football Draft tonight. Not sure how much prep time he put into it this year, but I'm fairly certain it was comparable to last year. If you missed last year's post on what Fantasy Football is like in my house, it might be worth reading... I know many of you can relate.

Alright, that's it for me. Happy One More Week Closer to Fall! (I heard rumor that they have pumpkins and mums outside of Kroger. Can I get a what-what?!)

a good weekend

We've had a GREAT weekend so far. Yesterday was Jonah's Half Birthday, so we thawed out part of his leftover birthday cake (we still have the entire white chocolate top tier left... this was the leftover vanilla layer), and had an impromptu pizza/cake dinner with our neighbors.

They live two houses behind us, and have two girls, four and 14 months. Their sweet mommy brought them over to play yesterday and, honestly, it was the best half birthday present Jonah could have gotten. He was so excited he just yelled and yelled, and they were so great playing with him. This is Emma. I wanted a better photo, but every time I tried to get them together, my camera wouldn't snap (curse you D40, curse you), and Emma would take off.

Today we had arranged for Mom to watch Jonah so we could go look at some used vans. And guess what? We got one of THESE!

Yep, a Sienna! I didn't think there was any way we could afford a Sienna, but it's an '07, and we got an awesome deal. And they gave us a better interest rate than we had found on our own and way more for our trade-in than I thought we'd get.

It was a comparable price for an 09 Dodge Caravan with about 30,000 miles or the 07 Sienna with 50,000 miles. Ultimately, we chose Toyota over Dodge, and I'm glad we did. I don't think we could have gotten a better deal. I'm so incredibly thankful. Before we went in, I prayed something like, "God, please help us not be idiots and give us a salesman that isn't a schmuck." I know. I'm an excellent pray-er. But honestly, all joking aside, I really do feel like God was in this. Our salesman, Cosme, was from Ecuador and has only been here for two years. We spoke in Spanish just as much as we did English. He was so wonderful and when we told him about Jonah, he explained that he knew how we felt because he has a son with CP. I really do feel like he got it. We didn't feel pressured and stood our ground about the price we needed, and I'm just really happy with how it all turned out.

Jonah, meet Sienna. Sienna, Jonah.

And our two requirements for the van:

Rear air controls.

And stow n' go seats. (I was too lazy to take the strollers out to show them stowing and going.)

Matt and I currently have to wear jackets in the car because we have to keep the air on full blast for it to reach Jonah, so I'm so happy about rear air conditioning. Now he can be plenty cool enough, and I won't have to shave my legs every other hour. Ladies, you know what I'm talking about. AND the van has a luggage rack, so we can still use our canvas roof top carrier when we travel. The captain seats don't stow, but they roll forward (back to back with the front seats), so we will have SO. MUCH. SPACE. And we need it so badly. It's going to be a dream compared to how we've had to travel in the past.

And to top it all off, now we're JUST THIS COOL.

CAN YOU EVEN HANDLE IT?

18 months today

Hey Everybody! It's me, Jonah!

Today I turn ONE AND A HALF years old. I'm getting to be such a big boy!

I weigh over 25 pounds now, and I've jumped from the 25th to the 75th percentile. Mommy says it's 'cause of all that avocado and flaxseed oil she's been giving me. I've had many eating ups and downs (mostly downs), but we're so thankful for the g-tube, so I can get all the nutrition I need, no matter what. Mommy's just started giving me some yogurt, again, once a day, and it's going pretty well. I sleep about 11 hours a night and take one nap a day. It's not that long (45 minutes to an hour and a half), but I stay in a good mood most days, so Mom doesn't mind too much.

I can crawl all over the place now. And guess what? I can pull up to standing now!

My favorite toys are still (and always, forevermore) my ball popper...

my stacking cups and shapes, any ball, this new toy that my Nana got me that's a fun light-up wand sort of thing, and books. I LOVE BOOKS, especially the kind with flaps. I'll sit and let Mom and Dad read to me. My favorite books are "Barnyard Dance," "Peek-a-Boo I Love You," "A Cuddle for Little Duck," "Mr. Brown Can Moo, Can You?" and "Where's Baby's Mommy?" I love music and anything with a rhythm. My favorite shows are "Yo Gabba Gabba," "Wonder Pets," and "Jack's Big Music Show." I also like "Curious Buddies."

One of my other favorite toys is my new activity table. I love it and it's the perfect height for kneeling or standing.

I'm getting more interested in non-toys these days. I love to explore, and am really learning that I can get into things. I love playing in the dishwasher and trash can. I'm such a fun age right now. I've learned to give hugs and kisses. I go "mm-mmm" when I give hugs, and I give great kisses.

I'm becoming so affectionate, and Mommy thinks I like snuggling and hugging more than ever. When Mom or Dad sit or lie down on the floor, I just can't stop myself from laying my head in their laps or crawling all over them. My favorite time of day is right before bed when Daddy takes me upstairs and we read books and play basketball. It's our "Man Time," Daddy says, and I love it. Last night he was teaching me how to throw my hands up and say, "Touchdown!"

I'm repeating lots of things. I'm not consistent in what I say, but at one time or another, I've said or repeated: dog, kitty, baby, bear, hello, bye-bye, ten, circle, moo, ha-ha-ha (what a monkey says), meow, pop, ball, daddy, up, down, nana, shaina, granny, and deac. Mommy thinks that's it but she may be forgetting some. She thinks maybe I said "mommy" yesterday, but she's not sure. She doubts it. I like to drive her crazy like that.

These last three months were busy and exciting. I guess the biggest thing is that this is the first time I've ever made it from well visit to well visit without having to go to the doctor's office. I've been so healthy!

In other news, Mommy gave me my first full hair cut...

I got to go to the Children's Museum for the very first time...

and to the beach (for the second time, but I don't really remember the first)...

I got to go swimming for the first time (LOVED it!)...

And I got to take my first stroll by the ocean...

and Mommy bought me my very own big boy shoes (even though she still calls me her baby)...

The hardest thing about the last three months has been the heat. It has been H.O.T. We hardly go outside at all, except to check the mail. I spend my days longingly looking out the front door...

waiting for the day I can break outta this joint...

I'm enjoying getting out more and more, although I'm still a little apprehensive in new places. I still like going to Target, the grocery store, and I love going to church and playing in the nursery. I'm not ready for Mom or Dad to leave me there yet, but I'm getting more comfortable. Mommy can't wait until the Fall when we can get out and EXPLORE. She has big plans for us, including but not limited to: the zoo, a pumpkin patch, every park in Forsyth County, the Farmer's Market, the fair, and restaurants with outdoor seating. We can't wait. I mean, our house is cozy and all, but enough already! We want OUT!

It's been a great three months, and Mom and Dad know that the best is yet to come. They just love me so much, y'all. Sometimes it's almost suffocating...

How embarrassing. They are so proud of me and can't believe how far I've come and all the things I've accomplished. They thank God for me all the time and can't wait to see what He has in store for me. They know it will be something great and are so excited for my future.

And guess what else? Mommy says we get to eat the rest of my amazing birthday cake tomorrow. I mean, they'll eat it. Me, not so much. Who do you guys think I am? Let THEM eat cake.

Thanks for praying for me and following my story and letting everybody know about EB. I'm doing so well, resisting infection, gaining weight, breathing easy... all because of the prayers you've prayed. Mommy, Daddy, and I just can't thank you enough. You're loved and appreciated. So, THANK YOU!

photos

Crazy hair, dirty bandages, about to get nudey. Good times.

All clean in his Grouchy Smurf t-shirt. (Thanks, Aunt Kim!)

I love this kid.

The best part of my day - Jonah Kisses.

I don't really know, but I thought it was funny.

He loves his Leap Frog Activity Table from his friends, Carston and Caroline.

Today's been okay. Jonah had his psych evaluation today. I was pretty skeptical, because, honestly, how do you evaluate an 18 month old? But it went well. Really, she just talked to me about all the issues Jonah's had, his reflux, current schedule, and how feedings are going now. We both agree that we need to take it slowly, not push him too hard, and have small goals. She agrees that his aversion is mostly driven by his negative experiences from severe reflux (I'm so tired of the puke), and that it's the one thing in his life he feels like he can control. It was very helpful, actually, and I'm glad to have focus, a plan, and someone who is trying to understand all sides of the complexity that is Jonah and eating.

We have some friends coming tomorrow afternoon, and I'm excited that Jonah gets to socialize with some kiddos.

Well, it's been a busy day and I didn't sleep well last night, so I'm off to bed. Goodnight.

convicted

Between this post by my friend, Meredith, (seriously, go read it) and this video...





posted by my other friend, Meredith, I'm feeling convicted today.


Don't you hate/love it when God smacks it right in your face like that?

jonah update and fun discoveries

Matt and I had a really great day yesterday, and the report from Granny and Grandaddy was that Jonah was a very good boy... who took an extra long nap. Go figure. Matt and I were able to eat a delicious meal at Cracker Barrel, and then we were able to use our 50% coupons at Gap and caught a few other clearance sales. I love me a good sale. It would seem I'm becoming a shopper in my old age. Funny how being stuck at home will do that to a girl. Afterwards, we went to see Inception and then got dinner at Ronni's. And between my carb-fest at Cracker Barrel and the wings and pizza (both still as good as I remembered) at Ronni's, I'm fairly certain I gained 10 pounds. Oh well. Back on the wagon tomorrow. My goal is to work out four times this week, but that will mean getting up at 5:45 at least two mornings this week and going first thing. Pray for me, folks. It will take a miracle to make that one happen.

We made it to church today and Jonah is napping now. Good day so far.
**********

A quick Jonah update:
- Eating: I took a mega break from offering anything to him by mouth. For both of our sakes, and it was the right decision seeing as how I don't feel like jumping out our kitchen window anymore (kidding... sort of). A couple of times this week, I've very nonchalantly offered Jonah some yogurt here and there, and he's eaten a couple of ounces a time or two. No problem, Little Buddy. It's all good. (This is me, not caring.)
- Sleeping: Still sleeping all night most every night for about 11 hours. Good stuff. He only takes one nap a day, for an hour and a half. I'd love to push that to two hours, but I'll take what I can get.
- Pain/Skin: Jonah's been in rough shape these last couple of weeks. He has a huge raw area (from a refilling, growing, dragging blister) on the top of his left arm/back, two big places on each side where his ribs are, a place around his g-tube site, a small place on the top of the other arm, and a big spot on the bottom of his foot/toes. His face is doing pretty well, but his forehead and eyelids are worse than the rest. I can't wait until he knows what rubbing does to his face and can understand to take it easy, already.
- Nutrition: In the last seven weeks, Jonah has gained three and a half pounds, and has grown three and a half centimeters. He has jumped from the 25th percentile to the 75th. Thank you, avocado, flaxseed oil, and duocal. We're backing off some of the calories and are able to relax a little more about the volume he takes in. It's nice to not feel like every calorie is life or death now. I'm so thankful.
- Cuteness: Yep, he still is.

So overall, things are well. Jonah has his 18 month check-up a week from Monday. I think this will be the first time EVER that we've not had to go to the doctor between well visits. Three months without a pediatrician visit! Thank you, God!
**********

I wanted to tell you about a couple of cool things I found out about this past week. You already know that I'm a mega fan of online grocery shopping. Actually, I try to do as much shopping online as I can, since our schedule, most days, doesn't allow for much getting out.

I now follow this blog, Money Saving Mom. It's a great place to print out coupons if you don't get the newspaper, and you can sign up for weekly emails and pick your preferred stores, and she'll email you the deals/coupon match ups to save you lots of money. I haven't really figured it all out yet, but she makes it super easy. You can join her Facebook page here.

And I also signed up with Groupon this week. It's free to join and you get emailed one coupon/awesome deal per day. You can take it or leave it, and there are a lot of things that don't interest me, but when you get a good one, it's so good. Matt and I each have an account and each paid for a $25 coupon to get $50 of clothes from The Gap. We paid $50 for $100 worth of clothes yesterday. Woohoo! (Note: you don't get your coupon immediately... or at least The Gap one didn't come immediately. I got it in an email the next day and printed it out from there, so don't be worried if it takes a while before you get it in your inbox.)

And probably my favorite discovery that I learned about from MckMama, ebates! Do you guys know about ebates? Essentially, you sign up for a free account, and you go there before you begin any online shopping. They have pretty much any store you can think of AND you can search for coupons (online codes) to get a percentage off and/or free shipping. And if you click on the store link from ebates (go through their site to get to your store of choice), you earn cash back on your purchases... anywhere from 1-10% in most cases. I've already earned a few dollars back. I think they send you your check quarterly. Anyway, if you want to sign up, it's free. AND I get rewarded for referring folks if you let them know I sent you. You can click here if you'd like to let them know you're coming through me. I've loved it so far.

Alright, just wanted to let you know about those fun things. Hope everyone is having a good and restful weekend. We're one week closer to Fall. Oh man, I can't wait. (On a side note, Cracker Barrel already has some of their Christmas stuff up! Apparently nobody's told them that it's still AUGUST.)

cutie in a laundry basket

Things are good here. Matt's parents are here visiting. Tomorrow, Matt finally gets his Father's Day present. For Father's Day, I bought him gift certificates to a couple of his favorite restaurants and movie tickets, and planned a fun day just for him. We were planning on going out for his day in July, but between Debbie's back problems and Great Grandaddy (her dad) getting sick, we had to postpone.

So the plan for tomorrow is for Jonah to spend the day with Granny and Grandaddy, and we get a day out: Cracker Barrel, the mall, the movies, and Ronni's (the best hot wings you've ever tasted) for dinner. We're both excited. And I don't think Granny and Grandaddy are hating it too much either.

Because seriously... who could really be upset about getting to spend a day with this guy?