Williams Family Blog

photo (not so) fun

2009-11-15T22:21:00.003-05:00

We've had a pretty good weekend. We did get out for about an hour and a half on Saturday (bought a few things at Kohl's... most stuff 50% off plus I had a coupon for an additional 15% off), and we did a lot (maybe too much) today.

We got up first thing, got dressing change out of the way, made it to church (hooray!), and then after coming home and feeding Jonah, went to a park in Greensboro for some pictures. Shaina and Mom came with us. My hope was that Shaina could take lots so we'd have one for our Christmas cards (that's right, how domestic am I). That's actually what we got at Kohl's - coordinating clothes for pictures. Not too matchy matchy, but coordinated colors anyway. All of that to say that I've been looking forward to this for weeks. I've been waiting for another pretty weekend so we could do it, and after this past week with all the rain, I was soooo excited.

So you know how it went, right?

Jonah fussed and cried the whole time. And finally, when I attempted feeding him to see if that would help, he flung himself back, screamed, pulled a scab off of his ear, and got blood all over my shirt. I don't really care that there's blood on the shirt, but needless to say, all of that ended the photo shoot. And I was extremely disappointed and frustrated and ticked off... not at Jonah but just that we never seem to get a "normal." And I know babies are fussy during photo shoots sometimes, but I don't think it ends with them refusing bottles, screaming, flailing around, and ripping their skin off. THAT about sends you over the edge. I think it was just one of those things where I had really built it up in my head and I had so looked forward to it and been waiting so long to "really" get out... there's no way it could have lived up to my expectations. But it really came in WAY below the bar. Sigh.

We are really struggling to get him to eat right now. He took 17 ounces the last two days and only 15 today. He is barely eating three ounces at a feeding, and it's like pulling teeth to do that. It took us from 7:30 until 9:50 tonight to get him to eat 50 cc's (1 1/2 ounces), and we finally just gave up. He just wanted to sleep and every time you'd put the bottle in his mouth, he'd spit it out and start screaming and flailing. And this is how it's been for about a week now - at every feeding. He had gained an ounce on Friday, but things, at this point, are going downhill. I think I'm going to go to Target tomorrow and buy a couple different types of formula to see if he takes any other kind better. The GI seems to think it's possible he could have outgrown his protein sensitivity by now (kids can do that as they approach a year, apparently), so he said it might be worth a shot to try something besides Alimentum (aka burnt potato water). We've given up on solids for now.

Anyway, I'm tired and frustrated. I know, compared to Courtney and Tripp, I have nothing to complain about, but I still need to vent. Could you please pray for Jonah's eating difficulties (you know, for the 475,000th time)? I'm really worried about him.

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And I just want to say an extra special thank you to Matt's parents' Sunday School Class, The Rice Family, and Liberty Chapel UMC. Thank you from the bottom of our hearts. We are overwhelmed at your kindness and love. Thank you for being the hands of Jesus to our family.

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Oh yeah, and let me know if you have found a good-tasting formula your kid really took well because of the taste. At this point, I'm willing to try just about anything.

If only sweet tea could sustain him...

cooped up...

2009-11-13T16:40:00.001-05:00

Cooped up in the house with this guy...

... and there's no where else I'd rather be.

(But seriously, if it rains one more day, I'm gonna go nuts. Tomorrow, we're bustin' outta here.)

an update on tripp

2009-11-13T08:11:00.006-05:00

UPDATE:
It's not pneumonia. But you probably already know that. I've been doing dressing change, eating lunch, and force feeding my child, so I'm a little behind. Courtney posted that Tripp's lungs look really good. The reason he's having trouble breathing is because of all the mucousy secretions from his virus. His trach is getting clogged up. (That's my really "I don't know anything about anything" explanation.) Anyway, they are starting him on Atrovent to help dry up the secretions, but have to be careful not to dry him out too much. They are still in the ICU, and he did have another episode this morning, but Courtney says she knows what to look for now and how to help him before he gets in too much trouble. For her explanation (which is much better than mine), you can visit his Caring Bridge site.
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An update from Tripp's Caring Bridge:

Hey guys. Real quick update...Today Tripp was taking a nap and started breathing really heavy. I didn't think much of it.. just that he was probably in a deep sleep. Well, when he woke up, he was in a complete state of panic. Nothing was coming through the trach at all... he was making noise through his mouth but by trying REALLY hard to do so. His feet and hands started turning purple and I could tell by his face that something was not right. (Thank the GOOD LORD that my mom had just gotten there and I wasn't by myself). So we put him on the changing table... and within seconds, he was completely grey... everywhere- his mouth, face eyes... everything. There was no air coming out of the trach, so I took that one out and put a new one in. There was still no air coming out. By this time he was giving up and had closed his eyes. I shook him and they opened back for a second. I got the ambu bag and gave him some breaths through the trach. Still nothing. So I did it again. He was still moving some air through his mouth and had a pulse, so I knew breaths were the only thing I could do. Then I called 911. Soon after, he finally started breathing through the trach and starting getting color back. The paramedics came in about 10 minutes (Thank God I had gotten him back breathing). By then his oxygen was about 93% with blow-by oxygen ON. So they brought in to the Ochsner ER by ambulance. Yeah... not over yet. THEN, he had another one of the exact same episodes in the ER. Except this time, the nurses were just standing there watching ME try to unclog the trach (oh, by the way, they think he is doing that because he is getting mucous plugs in his trach because of the thick secretions he's having.. That OR pneumonia). Anyway, so going back to me being the doctor and the nurse and everything else.... there ya go. So when no one else would do ANYTHING.... I called my ENT (THANK THE GOOD LORD ABOVE FOR OUR ENT......... I COULD NOT HAVE A BETTER ONE. SHE IS AMAZING...She's not only Tripp's ENT, but MY therapist.) I called her cell and she LEFT HER HOUSE (which is close to the hospital, thank GOD) and was there in 5 minutes. She changed the trach out again and we got it unclogged. SOO... we are now in ICU and he is stable and breathing better. He is on oxygen and humidified air to try and thin out the secretions. Please continue to pray for him to get better and also for us not to catch anything else from this hospital!) I will try my best to keep you updated. I cannot express how grateful I am for all of you and for everyone's constant love and support. I know it's what is keeping me going. Thank you. Love you all. Courtney

Can you imagine? Can you imagine watching your child wake up and having to see that panicked look in his eyes? Can you imagine literally breathing for him until help arrives? And then, you go to the ER and it happens again, and the people you are trusting to care for your child are just STANDING THERE while YOU have to be the one saving your kid's life... because they DON'T KNOW WHAT TO DO.

That's one of the worst things about EB. Half the time, the people who are SUPPOSED to know, who are SUPPOSED to be able to help either just stand there or make matters worse. YOU, as the parent, literally hold your child's life in YOUR hands. It's up to you to nurse, doctor, educate. It's overwhelming, exhausting, and completely terrifying.

Please be in continued prayer for Tripp and his parents. We've only experienced a tiny fraction of what they have, and I know how scary it was for us. Please pray for strength, courage, perserverence, and of course healing.

Thanks. :)

URGENT PRAYER REQUEST FOR TRIPP

2009-11-12T20:04:00.002-05:00

Please, please say prayers for Tripp tonight.

Courtney just texted me and said that he turned gray and stopped breathing earlier today. She had to give him breaths through his trach and called 911. They took him to the ER, and he has been admitted.

They think he has pneumonia.

Pneumonia is bad for any baby, but is especially bad for an EB baby.

Please visit Tripp's Caring Bridge if you would like to leave them a message. I don't know that Courtney has had any time to update it, but I'm sure she will when she gets a chance.

Thank you so much.

coming soon...

2009-11-12T16:52:00.003-05:00

Hey everybody,

Well, I really want to give back to you guys for being such loyal and wonderful friends AND I want to give my good friend, JEN, some exposure for her new cloth diaper business, SerwaChic, so...

LOOK FOR A CLOTH DIAPER GIVEAWAY COMING SOON TO A BLOG NEAR YOU (ahem, this one.)

In the next couple days (or by next week at the latest... don't you love how ambiguous I am), I'll be giving away (or really Jen will... I'm not doing anything but posting about it) these four gift certificates to a lucky reader. I'll post some pictures of her great diapers and nursing covers and also let you guys see the GREAT custom cloth diapers she made for Jonah. And all you'll have to do on THAT post is comment for a chance to win.

These certificates are good for: one nursing cover, one fitted diaper, one All In One diaper, and one Two Size Snap Diaper.

And hey, even if you don't have kids or are out of the diapering stage, THESE would make a rockin' gift. Seriously, I would totally be jealous.

Okay, so be on the lookout for the giveaway. And you better participate, because it's my very first one, and I'll feel like a total loser if you guys leave me hangin'. But no pressure or anything.

So comment, comment, comment. (But not on this post. This is NOT the giveaway. I mean, feel free to leave comments here, but they will not get you any cool presents. Your comments here will just make me smile. They WILL make me feel all gushy inside reminding me of how much I love you. They WILL NOT qualify you for free stuff. Okay, just wanted to clear that up. I'm going to stop typing now. Can you tell Jonah's taking a nap and I finally have some free time? Ok, really, I'm stopping now.)

Man, I'm no good at this stuff. This has got to be THE most confusing giveaway known to man. Except that THIS isn't the giveaway. You know what I'm sayin'? Oh, you don't?

Me neither.

a long day and poo on Ida

2009-11-11T21:03:00.004-05:00

A very long day today.

Jonah only took 18 ounces, and it was a MAJOR struggle getting him to take even that much. He's now fighting us even in his sleep. He's a smart one, he is. I hope this is just the last couple days and not a habit, or we'll be in trouble and on the road to a g-tube yet again. He'll be weighed again on Friday, so we'll see where he stands.

He's still not napping except in my arms... like I said... Long Day.

Don't get me wrong, he's sweet and beautiful, and I love holding him, but I get so tired struggling to get him to sleep and feed him, all I want to do is lie down... if only for thirty minutes. But as soon as I try to put him down, his eyes pop open. And unfortunately, most of the time he's not waking up happy.

Sorry, today is a negative day. We haven't even stepped out the door in two days, something about a tropical storm passing through... constant rain... frigid wind. No fun.

I'm having a hard time knowing how to entertain him (and myself) for a full day stuck in doors with no napping. We've had rough nights the last two or three, so I think I'm just overly tired. It's my night tonight, but I'm hoping it goes well, and I can catch up a little. My whole perspective changes when I'm tired, and I HATE being a whiny baby. I know we have it good.

Could you say a few prayers for Tripp tonight? He's struggling with a nasty cold or virus or something and is also having major pain from chronic mouth blisters/sores (EIGHT TEETH last I heard). Courtney is having to suction him about every five minutes. I know by the way I'm feeling, it must be 20 times harder for her. And she handles it with such grace, always thankful. Anyway, if you could say a prayer for Tripp to feel better soon and for strength for his parents, I know they would appreciate it so much.
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And on another note...

HAPPY FIRST BIRTHDAY, JUDE! WE LOVE YOU BUDDY!

he finally did it!

2009-11-10T21:28:00.003-05:00

Very quick tonight...

Jonah had me up a lot last night, and I am completely exhausted. (AND we haven't set up for tomorrow's dressing change yet.)

The big news from today:

JONAH ROLLED OVER (finally) ALL BY HIMSELF!

He only did it once and hasn't done it since, but he most definitely (with verbal coaxing and toy dangling from me) rolled over from his back to stomach. He keeps trying to do it again, but with his arm being so thick and bandaged, he really has a hard time getting over it. When he did it earlier today, he had his arm up, elbow out of the way, so it was easier.

He's so sweet. Kathryn was here and saw him do it, and she and I yelled so much and so loud, I was sure we were going to make him cry. But nope. He just smiled and smiled so proud of himself. And then he immediately got ticked that he was on his stomach. And then we called Daddy. :)

Okay, gotta run and set up. And then it's off to bed.

I'll try to get Jonah on video rolling... you know, if he ever decides to do it again. I'm not holding my breath. That boy has a mind of his own (and a pretty feisty attitude too... I don't know where he gets that.)

a few pics from the weekend

2009-11-09T21:35:00.003-05:00

Hanging out on the deck on Friday.

Playing with his new favorite toy... well, it's a tie between this and my cell phone.

With Aunt Sarah at Gabe's spot on Saturday.

Looking at the ducks with Mommy.

Daddy corralling the ducks for Jonah's viewing pleasure.

Playing with Gabe's flowers.

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Nothing much new here today. We did get to go to the mall, and for those of you who care, I got a GREAT pair of brown pants - exactly what I wanted - for $21.00 at Eddie Bauer. That's what I'm talkin' about.

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But really, who cares about brown pants? I'm so pumped about Stellan's successful ablation I'm literally all giddy and fluttery inside. I don't know about you, but I spent most of the day F5 refreshing Jennifer's twitter page every free moment I got. Still praying for the gunk in his lungs and his fever, but man, oh man, GOD IS AWESOME. I knew He was still in the miracle business. HOORAY!

our weekend

2009-11-08T21:37:00.004-05:00

We've had a nice weekend, and I have a couple pictures to prove it, although I'm too tired to get them off my camera and put them up tonight.

Matt's parents came Friday night around 9, and we were just finishing up putting Jonah to bed. We got up Saturday morning, fed Jonah, let him take a long morning nap (holding him, of course), and then did dressing change. We ate lunch here and then later in the afternoon, my sister, Sarah, came over and we all went out to Gabe's spot (Debbie needed to put some flowers on her brother's grave who is also buried there) and then to Garden Ridge in Greensboro. I like that store. Lots of stuff for reasonable prices. They have LOTS of outdoor Christmas decorations, but I was being indecisive and thinking to myself that I don't have a staple gun or a tall ladder or creative decorating skills or energy, so, needless to say, I didn't buy much of anything. Actually, I got two pairs of pajama pants, 6 pairs of white athletic socks, the book Corduroy, a fall wreath for the front door, and a Christmas decorative stake thingy to stick out front. In my head, I'm totally going to go all out - in the decoration department - for Jonah's first Christmas. But when I really sit and think about how much money, time, and energy that will take, it just makes me feel tired. Pretty much anything outside of the day-to-day makes me feel tired. Sometimes I think I'm just lazy. If I can get dressing change done before noon, I feel like it's a productive day... and then I just kind of feel sluggish until bedtime. I know. I know. Get my thyroid checked. It's on my list.

Today Jonah didn't wake up until 7:45 (after waking up at 6:20 babbling... my response - ignoring him. It apparently worked.) Unfortunately he woke up VERY poopy, which required immediate dressing change. We went straight into it hoping we could still make it to church, but it was 9:30 by the time we got done. We knew we couldn't get him fed, both of us showered and ready, and him changed and out the door within an hour. So no church for us today. We did take him out around 2:00 to lunch at The Loop. Matt and I like taking him to places with outdoor seating (although there are very few here in Kville), because he's happier outdoors and the germs aren't closed in. He was great! Then Matt kept him for about two and a half hours so I could go SHOPPING! I'm not usually a big shopper, but I am desperate for some fall/winter clothes, and clothes shopping is not an easy thing to do with Jonah. The last two falls/winters I've been in maternity clothes, so my old stuff either doesn't fit right anymore or has been washed and dried so many times it's all faded, bumped up, or too short. AND I'm feeling the need to feel pretty. I know that's not really important, and I definitely wouldn't classify myself as "fashionable," but I wanted a few new (colorful) tops for the cool weather. (Staying in your pajama pants and t-shirts with your hair in a pony tail all day starts to make you feel really frumpy after a while.) I tend to buy everything in really dark shades, so I made myself buy things in pink, purple, orange, yellow, and green today. I had great success at Kohl's, and I feel like I got some good deals.

I'm at a frustrating place right now because the styles in Juniors don't really suit me anymore (or at least I feel like I should be dressing differently), but nothing in Misses really fits.

And for crying out loud, where are all the dark brown casual but not too casual pants??? (I tried Target, Kohl's, Maurices, and CATO.) I hate having something very specific in my head but not having a clue where to get it. I'm hoping, if Jonah cooperates, Matt's mom and I can head to the mall tomorrow.

I'm counting on you GAP. You're my only hope.

Jonah ate 22 ounces on Saturday, but only 19 1/2 today.

Oh yeah, and he had a big gusher on Saturday morning, you know, the morning after I blogged about it. Why oh WHY do I do that???

This officially concludes the most boring post ever.

PS - Tripp, Jonah said to say, "Good game." We almost had you, but we have a tendency to screw things up in the end. Hope you got to watch the game with your daddy.

go panthers!

2009-11-08T11:08:00.002-05:00

Dear Tripp,

GO PANTHERS!

Love,

Jonah

quick update

2009-11-06T22:24:00.003-05:00

Just a short update tonight. I'm about to go to bed. Jonah was only up for about thirty minutes overnight, but I went to bed way too late, so I kicked my own butt.

The nurse came and weighed Jonah yesterday. He only gained an ounce over this last week, but it's not a loss, so we'll take it. Plus I think all his calories went to length instead of weight. I swear he seems like he's grown a foot over the last two weeks. He's getting taller and thinning out, and he doesn't look like my little chubby-faced fatty anymore. Kinda sad. :(

He ate 24.8 ounces today! Hooray!

He's still not really napping more than twenty to thirty minutes at a time, and most of the time, he'll only sleep as long as I'm holding him.

I know I shouldn't do this but...

He hasn't had a gusher since Tuesday of LAST week... so we're going on ten days! And it was seven days between his last two. I'm not saying he won't do it again (especially now that I blogged about it), but hopefully we're outgrowing it.

Matt's folks are here this weekend, so I'm excited about that. They're only here until tomorrow evening. I'm hoping we can get out tomorrow (I've been out once since Sunday... Jonah hasn't been out at all since then). It's supposed to be a pretty weekend here, so I hope we can spend a lot of it outside. I figure we won't have that many more warm ones left.

Okay, off to bed. Thanks for all the wonderful comments and emails. You guys are the best. I'm better now. :)

anonymous comments

2009-11-05T22:44:00.005-05:00

This comment was just posted by Anonymous:

Hey mom! That's not very "christian" of you to tell me to get a life. Maybe you need to get one too besides going to Target every chance you can get and then blogging endlessly about it!!! If you don't like my comments about T.V. then maybe you will listen to the American Academy of Pediatrics and what they say about children under 2 watching T.V. (see below)The American Academy of Pediatrics (AAP) recommends that kids under 2 years old not watch ANY (hear that Target mom!) TV and that those older than 2 watch no more than 1 to 2 hours a day of quality programming.The first 2 years of life are considered a critical time for brain development. TV and other electronic media can get in the way of exploring, playing, and interacting with parents and others, which encourages learning and healthy physical and social development.

I'm sorry if my comment seemed not "christian," although I still don't really know what that means. All a Christian is is an imperfect being saved by grace in Christ. And I need more grace and forgiveness than most. I don't think I've been shy about admitting that fact.

On the other hand, I am ALL DONE with people judging my parenting and acting like they "know" what kind of mother I am based on what I choose to share here on my blog. Most mothers can skip baths, leave their kids in their pajamas all day, don't have to do two hour dressing changes DAILY, and get a small break when their kids close their eyes (as opposed to having to use every nap as an opportunity to struggle to feed your child). If I need to put Jonah in front of the TV to brush my teeth or eat my lunch or fold the laundry, I am going to put him in front of the TV... you know, horribly brain-rotting television like Little Bear. Please do not act like you know how I engage, interact with, or educate my child. I spend more quality time with Jonah than about 99% of parents... and I don't take a moment of it for granted. I love it. I live for it. I do anything and everything for him. And God gives me the strength, patience, and perseverance to do it day after day after day. I wish you could be here to see what a day is like for us. Then you might be a little slower to "speak."

And obviously you are ashamed of what you have to say (or at least the way you are going about saying it) because you continue to post as Anonymous. I loved the way one reader said it, "If you have an opinion, then OWN IT."

I have TWO email addresses on my sidebar where you can contact me. I would appreciate you using mine instead of Jonah's since his should be reserved for encouragement. What a coward you are! YOU are the one who should be ashamed.

To everyone else:

So many of you post as Anonymous, and you are so uplifting, so encouraging, so completely wonderful. But I cannot take comments from the cowards ANY longer. They bring out the demon in me. They make me so angry I shake. They ruin my day. They drive me nuts. I'm home all day long trying to take care of Jonah as best I can. I have very few hobbies; very little time for non-Jonah things. But the blog is a hobby that I enjoy. It's meant to be positive - sometimes happy, sometimes sad, sometimes funny, sometimes sarcastic, sometimes completely superficial - but never mean or hateful. It was started for Gabe. I continue it for Jonah. It's mostly for my family and a scrapbook for my boys. It's my blog.

And I need it to be a good thing. For me. For my family.

So...

I am no longer allowing anonymous comments. This is not the first instance where people have abused that they can post comments faceless... with no accountability, no consequence. They can abuse innocent people for whatever reason. I don't get it. I don't get people who spend their time reading blogs they don't agree with just to hurt the people who write them. I don't get it. I don't get why they are so angry or jealous or hopeless or sad that they have to take their time to bring down other people.

And I would say I'll just delete them and move on, but I know, emotionally, I just can't take it. My skin is too thin. My heart is too fragile. My brain is too tired.

So please, please, if you are a regular positive poster who posts as Anonymous, I'm begging you to take the time to register with gmail or post with an ID. I still want to hear from you! You warm my heart. You make me feel like I'm surrounded by friends... even when I'm all by myself. You make me excited that there are positive people in the world who will love on and care for Jonah, despite his outward appearance. I hope you stay!

And for all the haters, feel free to email me if you'd like to have an open discussion about something you disagree with. You don't need to hide. If you feel so strongly enough about something you feel the need to comment, then email me. If you have an opinion, OWN IT!

Thank you to the 99.5% of you who lift us up and encourage us every day. We thank God for you!

sweet tea for baby j

2009-11-05T16:08:00.004-05:00

So in an effort to convince Jonah that not everything that goes toward his mouth is negative...

I let him try sweet tea.

And Jonah, the boy who won't open his mouth for anything, opened right up (over and over again) for some good ol' sweet tea.

Here in the south, we like to start 'em early.

And for those of you who've asked, here is how I like to make mine -

I always use the Lipton Decaf tea bags. I definitely think Lipton is better than Luzianne. I typically get the Family size bags. (But I'd say five or six of the small bags equals two of the big ones.)

I turn a burner on high and fill a medium saucepan about 3/4 full of water. (OK, really I don't know what a "medium saucepan" is exactly. I use not the smallest pots I have, but the next size up... the size you'd warm up a big can of soup in.)

I put four family size tea bags in the water.

I let the water get to a boil, and then almost immediately turn it off. (It's okay if it boils for about a minute, but no longer.)

I then let it sit for about five minutes (but no longer) while I put my sugar in my gallon pitcher. For a gallon of tea, I use about 1 1/2 cups of sugar. Suuuh-weeeet.

I then pour the tea over the sugar in the pitcher, using a slotted spoon and mashing the extra tea liquid out of the bags.

(I don't like my tea to taste over-brewed... think Bojangles...blah... so that's why I don't boil it very long, don't let it sit for very long, and get rid of the bags early.)

I add a little more hot water and mix the sugar until it dissolves and then fill the pitcher the rest of the way up with cold water.

I put it in the fridge and usually don't touch it for 24 hours... or at least until it's really, really cold. (THIS may be the most important part!)

I like NOT using ice if I can get by with it.

So that's how I do it, and it's dang tasty if I do say so myself.

Here are my DON'TS for sweet tea:

- DON'T use Splenda when making sweet tea. You might as well give up tea altogether.

- DON'T make tea in a coffee pot. No matter how much you clean the pot, you can taste the coffee (or I can, anyway).

- DON'T over-brew your tea. If you leave it too long and get distracted or let it boil longer than just a couple minutes, start over.

- DON'T buy "sweet" tea in a bottle at a convenience store. It's GROSS. And in most they add that fake lemon flavoring, and that's even worse.

My DO's:
- DO try the sweet tea at El Maguey. It's the best I've ever had. Seriously.

- DO give sweet tea to your eight-month-old. DO NOT care what other people may think of you because of this.

It's your blog and your kid and you'll let him drink sweet tea (AND WATCH TV EVEN THOUGH HE'S UNDER TWO YEARS OLD) if you want to. (Some people - ahem, Anonymous - need to get a life.)

fajita mac and cheese

2009-11-04T21:10:00.003-05:00

This recipe is from the January 2004 issue of Southern Living. But I think Kim, my sister-in-law, is the one who passed it along to me.

I made it a couple weeks ago, and it was SUPER tasty and REALLY easy.

Ingredients:
1 1/2 pounds ground beef
16 ounces elbow macaroni, cooked and drained
1/2 cup sliced green onions, divided
1 (1.4 oz) envelope fajita seasoning mix
2 (15.5 oz) jars salsa con queso
1/2 (4.5 oz) package taco shells, crushed

1. Chop green onions. (Look up how to chop green onions because you never have before.)

2. Feel better that you must not be the only person who doesn't know the proper way to chop green onions because there's an actual video on it.

3. Whatever you do, do NOT admit to the whole world, publicly on your blog, that you had to watch a video on how to chop green onions before you could complete such a simple task.

4. Complete simple task successfully. Feel really proud. Take a break and reward yourself with some Hershey's chocolate.

5. Brown ground beef in a large skillet; drain.

6. Stir in cooked macaroni, 1/4 cup green onions, seasoning mix, and salsa con queso.

7. Pour into a lightly greased 13 x 9 inch baking dish.

8. Add additional (uncalled for) cheese on top. Because, really, can you ever have too much cheese?

9. Sprinkle with crushed taco shells.

10. Bake at 350 degrees for 30 minutes or until thoroughly heated. Sprinkle with remaining 1/4 cup green onions.

ENJOY!

Note: I am presenting this recipe in all of its unaltered, full fat, deliciously wonderful glory. I do not claim that it is a healthy recipe. You are free to make any changes you so desire, but I will always present the recipes I've tried in their original state. I'm sure I could have used ground turkey or whole wheat macaroni or low-fat, organic salsa con queso (or something), but I didn't. And I'm okay with it. Feel free to be healthy if you feel so led.

As for me and my house, we'll eat fatty cheese, and we'll like it.

jonah's sweet face

2009-11-03T21:59:00.005-05:00

This picture is one Lauren took from Sunday. I wanted to post it here in case you didn't have a chance to go over to her blog and see it there. I LOVE this!

And these are pictures from today. I just wanted to document how great his face is looking these last couple days. I'm trying my hardest not to get my hopes up. Tomorrow he could wake up and be covered. But I've been working in as many sweet face kisses as I can and am thanking God for this gift, even if it is only for today.

Man, he's beautiful.

a jonah funny

2009-11-03T16:41:00.003-05:00

So ever since I got pregnant with Gabe and then started this blog, I've dreamed of the day I would get to blog about my kids' funnies. You know what I'm talking about right? All the crazy things that kids say and do, how clever they are (albeit unintentionally)... all the good stuff that makes the day to day drone just... BEAUTIFUL.

Like...

When Matt was little and was in line at the grocery store, his mom had bought some sanitary napkins. Matt saw them going down the belt, gasped, and said (very loudly), "MOM, do you have bladder control problems???"

Or the time I stuck my tongue out at my mom (I was probably three years old), so she popped me. And then, through my tears (don't you feel so sorry for me?), I said, "My mind wants to say you're a mean mommy, but I won't."

And I know Jonah can't talk yet or anything, but man, oh man, I think we're gonna get some good ones.

So here is my first Jonah Funny.

On Friday, Kathryn had come over and we put Jonah in his little chair in front of Little Bear so that we could eat some lunch (because Heaven Forbid the child actually take a nap). Anyway, he wasn't acting at all interested, and was looking around everywhere but the television, so I said, "Okay, Jonah, if you're not going to watch your show, we're going to turn it to something we want to watch." And I turned it to Everybody Loves Raymond. Then he started looking at the remote and grunting (such a man), so I handed him the remote control to play with. And within just a minute or so, Kathryn and I looked up and Little Bear was back on the TV and Jonah was just staring at it, completely enthralled. He had apparently hit the Previous button on the remote to get it back to his show.

I guess he told us.

jonah pics

2009-11-03T07:48:00.003-05:00

Check out Lauren's blog for some cute shots of Jonah.

Her photos are from Sunday when they stopped by our house on the way back to Greenville from Boone.

a few more halloween pics

2009-11-02T21:30:00.004-05:00

Here are a few more Halloween pics from Saturday. Despite the brightness of these photos (fake), it was a dreary, rainy day.

We woke up Saturday morning, and when I opened the front door, this spider had made its web from one porch post to the other. I thought it was very Halloweeny. (After I took this picture, Mr. Spider had to go. I'm sorry but anything that makes me scream when it moves is not welcome on my front porch.)

The three pictures I've posted with Jonah smiling (the two in the previous post and this one) are about the only smiles he had for picture time. He cried at The Pumpkin Patch the previous weekend, the night before Halloween the whole time we were carving pumpkins, and was pretty stoic throughout this photo session. He was not feeling Halloween. I have higher hopes for Thanksgiving and Christmas.

Please excuse the green mildew on our porch railings. Power-washing is on my ever-growing list of things to do, but it's just not happening. I probably could have clone stamped that junk out, but I'm just too tired. Oh well.

Matt and I worked together on the pumpkins. (Jonah fussed and cried in his high chair.) I did the "We love Jonah" one, and we both worked on the other one. Matt did the majority of it, and I just kind of cleaned it up a little. Matt said, "Wow. Pumpkin smell. Every year it surprises me." And then the next morning, we thought Jonah's morning poop definitely smelled like pumpkin. (No, he hadn't eaten any.) I have no idea why, but we both thought it before either of us said anything about it.

Jonah didn't dress up this year, just the little "My First" onsie. I wasn't really motivated to find a costume (although I did look a couple places), just because I knew it would frustrate me. All the ones I found either had hoods, zippers, hard plastic or other things I thought would cause face / chin / ear blisters. Or they just looked super-hot. I just didn't think it was worth it for him to not know the difference. Plus, I loved that little onsie, so I'm happy with how all the pictures turned out. Next year, though, we'll definitely find something (or I'll have Katie make him something - she made Rory a Toodee costume from scratch, and she doesn't even really sew. Crazy girl.).

We had 72 trick-or-treaters and that's down a little from last year - partly because of the rain and partly because we had to close up a little earlier this year to put Jonah to bed.

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

Jonah's eating a little better the last couple days (not more but easier). Yesterday he took seven and a half ounces completely awake and calm. It was amazing. Today he's kind of fallen back into crying until you get him to sleep and then taking the bottle, but I did get him to take about three ounces at his noon feeding before he fell asleep. I'm praying and praying that he'll continue to realize that eating is not so bad and start taking his bottles when he's awake. It's definitely a psychological aversion to eating and not a physical pain thing (or at least most of the time it's not).

He has not taken a nap (except the twenty minutes of sleeping when we feed him a bottle) for the last few days. And it's killing me. I'm so exhausted, and I don't ever get a break. Or if I do, it's shoving Jonah in front of the TV (which I hate to do too much) while I switch laundry, make phone calls, or check email. I'm determined to get him into a nap schedule again if it kills me. Every time I try to lay him down, his eyes pop open. But I'm going to sit in his room (to make sure he doesn't rub his face) and just let him lay there every day until he finally gets the hint. He has to eventually get the hint, right? He is so fussy at night between about 6 and 8 because he's so tired. But if we put him to bed earlier than about eight, he won't settle down until about that time anyway, and he wakes up super early in the morning (like pre-6:30). And he's so overly-tired by the time he goes to bed, he'll barely eat anything.

And I don't know if it's teething or the time change, but he's not sleeping nearly as well at night either. He was just waking up the one time when we were getting him up to eat, but last night he woke up and had to get a butt pat four times between 9 and midnight, and then screamed for most of the hour it took to feed him in the middle of the night. I was so on the verge of not posting tonight because I'm just so tired, but wanted to share those pics. Please don't worry if there's a night here and there over the next couple weeks where I don't post. Until he's sleeping better, I'm really going to try to get in bed earlier. I can feel the exhaustion setting in. And just ask Matt. I do NOT handle lack of sleep well. It isn't pretty.

Hope you guys had a Happy Halloween. I LOVE FALL.

happy halloween

2009-10-31T20:12:00.004-04:00

Happy Halloween!

Love,

Jonah

yet another miracle

2009-10-29T21:38:00.005-04:00

Wow! What a day! When the nurse took Jonah's weight, and we saw what it was, I just started crying. Jonah was looking at me like I was a crazy person. Isn't it funny how we, as parents, tend to FREAK OUT (with reason... most of the time anyway), but all the while our kids are like, "It's cool. Whatever." So nonchalant. He never even acknowledged the fact that he was pushing me (not really him but the circumstances) to the edge of a mental breakdown. Sweet, oblivious, 18 lb 3 oz child. How I love thee!

And just to clear things up for those of you who have just begun reading or don't know much about EB - You may think I'm crazy for talking g-tube for a (previously) 17 lb 11 oz eight-month-old. And if he were a "normal" baby, we would be. But the problem is not how much he weighs. The problem is with his growth curve. Any time he starts falling off his growth curve (and a month without gaining any weight was doing that), we have issues. There's a lot to consider with EB, but nutrition is #2 (I consider #1 to be infection). Like I said in an earlier post, once EB kids get behind, it's a real struggle getting them caught up. They need MANY more calories than "healthy" kids, and their bodies require lots of EXTRA to heal the blisters they do have and to regenerate new skin. Healing takes a lot out of you.

So... I hope that explains the urgency of the last couple weeks. And there is still a great chance that we are not out of the woods. I don't think this is the last time we'll be dealing with this (although God can do anything, so we wait in hopeful expectation), as there is so much to consider. G-tubes are good for so many reasons for EB kids - adequate nutrition, a happy alternative to shoving lots of meds and vitamins down your kid's throat, and one I've thought about a lot: a way to nourish them if they fall down and hit their lips or mouth. Can you imagine? Big blisters, days of healing, and the inability to eat. I can see why many EB parents get them. Actually, the idea of the g-tube itself sounds pretty good... it's just the hospital stay, the surgery, and mostly the intubation that scare the you know what out of me.

But anyway, for today I am SO happy, SO grateful, SO completely amazed at what God has done over this last week. EIGHT OUNCES!!! Wow! The most he's ever gained in a week is six ounces. And I just love you guys to pieces. Ninety-eight comments on a post about my kid gaining eight ounces! I can't say enough about what a great support you are to us, and to me especially. Knowing that Jonah is being prayed for all over the country and the world gives us so much hope and strength. We feel so blessed that God has given us the gift of YOU! Again and again I ask for you to pray VERY specifically, and again and again, God says, "Okay. Since SO MANY of you asked, I'll do it." You can just back and read my daily prayer requests from the NICU and see directly how God answered each and every prayer. Isn't that amazing? So many times God answers prayers or works in our life, and either we're too busy and miss it, we chalk it up to coincidence, or we realize it but then forget about it a week later. I am so BLESSED to have this blog. Not only do I have a record of Jonah's life and medical journey, but most importantly, I have a written record of God's miracles in his life... in our lives. That's just so neat to me. Sorry, I know I'm rambling. I'm just so excited for the day when Jonah can read (and truly understand) where he was, how far he's come, and the many, many things God has done for him.

And maybe by that time, he'll be completely healed.

Faith as a mustard seed...

It's coming, friends. Just you wait and see.

(My friend, Katie (Quinn's Mom), took this photo of Jonah and me on the hayride at The Pumpkin Patch. I just had to share it. She did such a good job. Look at that sweet face!)

PRAISE GOD

2009-10-29T10:16:00.003-04:00

The nurse just came and took Jonah's weight.

After a month of not gaining even one ounce, Jonah weighed in today at:

18 pounds and 3 ounces

That's an EIGHT ounce gain from last week!!!

Praise God!

jonah update

2009-10-28T20:19:00.002-04:00

Just a short post tonight. I feel very tired and it's my night with Jonah, so I'm trying not to be up too late. Plus, I feel like I should spend some overdue time with my hubby and pretend to care about The World Series... ya know, cause that's what good wives do.

Jonah ate 20.8 oz today and maybe about an ounce of solids.

I gave him the Periactin today before his nap, and he slept for three and a half hours. I don't know if that's because of the medicine or because he was so tired from not having napped yesterday/doctor's appointment today. His sheets were bloody (not unusual) when he woke up and I could tell his nose had been bleeding (unusual), so I'll have to keep an eye out for that. If the new meds dry him out too much, we'll have to stop them... bloody noses and corneal abrasions are the last thing we need. He also seemed VERY itchy from the time he got up from nap to the time he went to bed... strange considering the new med is an antihistamine. AND he was irritable.

So anyway, those things could be coincidental, but I just want to stay on top of it. If the same stuff happens again tonight, and he wakes up irritable and itchy tomorrow, I'll discontinue it. Any of you EB peeps ever tried that med?

Okay, off to wash dishes and mix milk (and pretend to care about baseball).

GI appt

2009-10-28T10:33:00.002-04:00

Our doctor's appt went well this morning. I feel VERY confident that Dr. S is on top of things, researching EB nutrition, g-tubes, and talking to the right people. He had even already emailed with Dr. Fine!!

But, because there's just kind of a natural plateau around eight months and Jonah's not losing weight, he's still in the wait and closely monitor stage. He said things will change if he starts losing weight, stops eating in his sleep, or goes a few more weeks without any weight gain.

He's talking with the surgeons and anesthesiologists at Brenner's so we can go ahead and get everybody up to speed and start discussions of what would need to happen if we did have to get the surgery.

And he's been started on Periactin just to see if it might work. Periactin is an antihistamine that also increases appetite. He just wants us to try that before we take more drastic measures.

So that's where we stand right now. No plans for surgery in the immediate future, praying that the Periactin will work at increasing his appetite and that Jonah will show interest in solids... especially the yogurt which has lots of nourishment value (as opposed to other stuff that's more just getting them used to eating food.)

Thanks for praying!

eight months today

2009-10-27T21:41:00.007-04:00

Hi Friends!

Today I turned eight months old. Wow! I'm getting so big.

I currently weigh 17 lbs, 11 oz and have for the last three and a half weeks.

Mom says I'm just as cute as ever... especially now that my hair has started coming back. It's getting so thick on top. Mom's favorite thing is to put it up in a mohawk after my bath.

And it will stay up without ANY Aquaphor, although it pretty much always has Aquaphor in it. I'm greasy, and I like it.

Socially and cognitively, I'm right on track. I make lots of sounds and love to talk. I think I get that from my mom. She never shuts up. Seriously Mom, I don't need to know everything. Really, some boundaries are okay. And don't think I didn't notice the other day that you kissed my bare hiney. I'm not letting that one go.

I regularly make the sounds ma, da, na, geh, and I sort of roll my r's. Mom's excited about that one. She says that will serve me well in my Spanish-speaking endeavors. Too bad it's a very slobbery skill at this point. We are going through many burp cloths around here. My favorite sound is my "machine gun" sound - eh eh eh eh eh eh. You get the idea. I make this face when I do it:

I've also learned to put my feet down when I'm lying down and arch my back up. I kind of jump up and down in that way, and I just think it's the best. Mom doesn't share that opinion when it comes to dressing change. I've just added it to my repertoire of things I do to make dressing change a little more complicated. It makes me really happy, though, so ultimately Mom thinks it's great too!

I am SO close to rolling over. See?

But then Mom will start jumping up and down and screaming, and I get distracted and roll back to my back. And I just smile and smile like I've already accomplished the goal. (And really, I have, because, little does Mom know, my only goal is to make her jump up and down and scream like a crazy person.)

Sometimes Mom helps me roll over. The OT calls this "facilitating the rolling over." I call it "Mom shoving me over on my face." Semantics.

But when I do get over on my tummy, this is typically my reaction:

When I'm in a decent mood, at least. Mom feels like it will be just a matter of days though. Because I am so close. If I could just figure out what to do with my stupid elbow.

I'm still not sitting up, but sometimes I can do it on my own for about five seconds. Then I either tip forward or fling myself back. Mom can't wait til I can sit up and support my own weight more. She says I'm getting heavy.

I'm sleeping mostly through the night (this week anyway), but Mom and Dad are still getting me up around 3:30 for a feeding. Most of the time I go right back to sleep. Sometimes I stay up for two hours. Depends on my mood. Some days I nap for two to three hours. Some days I sleep for two minutes. I like to keep The Big People on their toes. Makes life a lot more interesting.

I have a few favorite toys. I really like my dog whose ears flap up and down. Did you know he can sing? He sings "Do Your Ears Hang Low?" and I think he's really funny. I also like my soft, colorful Very Hungry Caterpillar. I like to chew on his antennas. Granny keeps calling them his antlers. She's so silly. Silly Granny, antlers are for mammals. And my Aunt Katherine just got me ALL. THREE. WONDER PETS.

I know, I know. I'm one lucky boy. What's that? You're jealous? You shouldn't be. Thou shalt not covet thy neighbor's Wonder Pets.

I also love another toy. The Big People call him "Deac." I don't know what a Deac is exactly, but I think he is awesome! Every time he comes near me, Mommy says, "Say, 'Hey Deac!'" And I just smile and kick my legs and try to get my hands on him. Sometimes he'll let me pet him, and he tolerates me pretty well. Notice I said "tolerates." I certainly wouldn't say he feels quite the same affection for me as I do for him.

He likes to sit at this distance.

I like it when he sits here.

Some new things this last month - I like to play a game Mom refers to as "respiratory distress" where I suck air in and make a scary noise. Mom comes running to realize that I'm making that noise completely on purpose and cracking myself up. (What she doesn't know is that I'm laughing at her.)

I still stop whatever cute thing I'm doing when Mom gets out the video camera and make crazy eyes. Drives Mom nuts. I'm still digging bath time for the most part, and Mom can't wait til I can sit up and she can cushion a seat for me so that I can actually be in the water. She just knows I'm gonna love it. I'm starting to laugh more frequently and with more gusto than before. And, oh man, when Dad comes home, I just go nuts... kicking my legs, flapping my arms, grunting, smiling. I'm so happy to see him!

My favorite song right now is "You Are My Sunshine." That seems to change from month to month though. What can I say? I'm a man with refined tastes. I need to change it up every now and then.

Okay, I'm off to bed. Mom says I have a really important doctor's appointment tomorrow to decide about my g-tube. I ate 29 ounces today!!! True, I spit up about four of them, but still, that's so much better. The reason I ate more is because I did not nap at all, so I was really tired all day. Mom could feed me every two to three hours and I would just take a 15 to 20 minute cat nap while she fed me. And then I was all done... with both eating and sleeping.

Could you pray for me and The Big People? Mom just needs to feel what the right decisions are. She needs certain doors to open and others to close, so she'll know what to do. A new fear has clinched her heart tonight - that maybe the intubation from the g-tube surgery will lead to scarring in my trachea which will lead to a tracheostomy (now that I'm finally a silent breather with NO STRIDOR)... if not immediate, then down the road. So now, although she was feeling more content about the surgery (not the who and where of it all, but at least the getting the g-tube part), she's all upside down again in her head and heart.

It's hard being eight months old. Lots of big decisions and tough choices. Mom and Dad know I'm so strong though. They know I can overcome any obstacle and that God will get me through it. And like Dad says, I may have some physical setbacks, but EB can't do anything to my mind and heart. And Mom says they're stronger than just about anybody's. She says she couldn't love me more if her life depended on it. Her heart's about to explode, she says. Don't worry. I'll make sure she gets that checked out.

update on tripp

2009-10-27T07:47:00.003-04:00

Here's an update from Tripp's Caring Bridge.

Hey it's mom. Well, we certainly knew that a tracheostomy was in the near future, but weren't really expecting it today. He went into surgery around 10:30 this morning and the plan was to go in and cut some tissue that was blocking his airway so he could breathe better. Well, when his ENT came out into the waiting room, I knew as soon as I saw her face that something was wrong (she has gotten VERY close to Tripp and our family, we LOVE her.) Anyway, she said that his airway was so swollen and had what she thought was some granulation tissue. She showed us pictures of the scope... pretty intense. Don't know how the little man was even breathing. She said that it was so swollen that she didn't think it would help to make the cuts. So the decision was pretty much made right there for us. THAT was tough. He is now back in ICU and doing well. Everything went fine, thank GOD and thank EVERYONE who was praying for our little fighter. He is starting to breathe a little bit on his own, so they are weaning the oxygen a little at a time. He is the most beautiful little thing... even more so now. I just love him so much and respect him so much. He is so strong. Stronger than I could ever be. He's amazing. I just can't wait until the initial shock and aggravation wears off and he can know what it feels like to actually be able to breathe!! And I am having serious withdrawals because I haven't held him and rocked him in like 3 days.. AHHH... I just want to pick him up and squeeze him and tell him how proud I am of him. Randy and I thank you from the bottom of our hearts for all of your thoughts and prayers. We need them so much and all the encouragement really helps us in such a difficult time. THANK YOU.Well, I just wanted to let everyone know that he now has the trach and everything is so far so good. I will try my best to keep you updated.

All my love, Courtney

So anyway, obviously a tracheostomy wasn't the desired outcome, but of course, the ultimate outcome is that Tripp can breathe easier now, which is what everyone wants. Courtney said that his skin is good, and he only got one little place on his arm from the blood pressure cuff. Pretty amazing.

Thank you for praying.