christmas, part one

I started to do a Christmas post, but then I realized I took so many photos (and I have an "I can't delete photos even if they're blurry or I have five of almost the same exact thing and also I have to edit all my photos even if the edits look almost as crappy as the original" syndrome), I'll have to split this up in a couple posts. Basically, we had a wonderful time with Matt's family. There was the normal Jonah stuff we always have to do, but there was plenty of relaxing, book reading, Scrabble playing, way too much eating, laughing, talking, sleeping etc. I can't tell you how nice it was to be away from the house for a few days and to have so many family members who wanted to help out with and entertain Jonah. I love Matt's family so much, and I feel so blessed that God put me with them. And Jonah was a pure joy and so much fun. I LOVE THIS AGE! Every day I treasure it all up in my heart, trying to hold on to all his cuteness and hilarity. He seriously is such a charmer and I am completely in love and enamored with this child. (I'm going to pretend he's always going to be like this and he won't pitch fits, talk back, bite his friends, or find me embarrassing... let me bask in my denial.)


So anyway, I thought I'd start with the most important part of Christmas - the loot Jonah scored. (Just kidding, of course.) But seriously, this kid is spoiled rotten, and I'm pretty sure he has the most toys of any child on the face of the planet. Okay, maybe not as many as Tripp, but he's coming in a close second. I have many more meaningful and better photos to share, but that will come later, due to the aforementioned photo syndrome.

Oh yeah, before we get too materialistic, I wanted to show you how great Jonah's face looked on the 24th.

And this was the 26th. Both are pretty amazing compared to the last ones I posted, huh? God is good!

Now to the stuff (and this was only a portion of it...)

Rumblin' Chuck Truck (that he was slightly scared of at first). 

Jungle thingy. Don't remember the name, but little animals with wheels slide down the path. Cute.

Jonah took a small break from "getting" to walk for the first time.

 Stocking stuff: some books...

... and a wooden train... it would appear Santa did his stocking shopping at the dollar bin at Target.

The big one - a Fisher Price Laugh and Learn Something Something Pony.

Santa may have gotten this one more for Daddy than for Jonah, but I think it will bring them both lots of joy for the next several years. It's going to start out in Jonah's bedroom if we can do some rearranging and find a spot to put it.

A geometric shape stacker. I really like this. Jonah agrees.

A surprise gift from Granny and Grandaddy - a Power Wheels! (Which he was TERRIFIED of at first and only moderately scared of now.)

A Little People Barn. (Hat not included.)

And this, Friends, is what my living room looked like after we unpacked today. Did I mention we have two more Christmases on Saturday? And did I also mention that the two ottomans shown (and another one off the kitchen, not shown in the photo), are already full of toys? Yep, we have some serious sorting, organizing, and redistributing to other rooms to do. Can you even spot Jonah?

Seriously though, this child is so loved and toys or no toys, he'll never feel lonely or unloved. That's our promise to him - no matter what you go through or how much you endure, no matter our financial situation or where we live, no matter how much you have or how little, no matter what, you will NEVER think you are unloved or wish you had different parents. (Well, you may wish that but it won't be because we don't love you enough... it'll be because we won't let you get a cell phone at the age of eight or because we'll make you do your homework before you turn on the TV... but not because you don't feel loved.)


I hope you all had a very Merry Christmas. I'll be back with more (and more walking videos) soon!

boo boo face still boo booed

Boo Boo Face - Day 3 (yesterday)

Boo Boo Face - Day 4 (today)

This crying wasn't from pain. Mean Mommy wouldn't give him the camera.

We've had a rough couple of days, as you can see. Jonah will go all day not hurting his face, and then BOOM he has a little, normal, toddler fall or bumps into a corner or I have to pat his face to clean it, and all of his skin comes off again. The two on his forehead keep growing and filling up, so I have to cut them with suture scissors, which makes them look worse. His upper lip has opened twice today and bled like crazy both times, so that's no closer to healing. Ugh. 

Tomorrow we leave for Matt's parents house. I'm excited about a few days away. We were going to go to this tomorrow night, but we may just do the drive through part now. Jonah won't know what he's missing and I just don't know that we can handle the stares and questions. He looks so incredibly rough right now, and there will be so many kids there. And kids ask questions... I'm so torn. Part of me is like, "Screw it. Forget everybody else and just give Jonah the experience." The other part of me is like, "Getting mean stares and comments and questions all night sounds miserable, and after this tough week, I just don't feel like I have the emotional energy to deal with it." I guess it's yet to be seen what part will win out.

Please keep praying. He has been much fussier the last few days. I'm sure a lot of it has to do with his face, but he's also throwing up more and seeming more mucusy, so he may have a touch of something. Matt has a sore throat, no voice, and is super achy, so Jonah may be picking that up too. 

I don't like being down at Christmas time. :( Good thing tomorrow is a new day!

yet another miracle

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!)

the nature of miracles

So I was already planning on doing a post on this topic, and had been thinking about it A LOT lately and trying to decide what I actually believe when my friend Jill, who is battling ALS, wrote this post. It was actually pretty crazy (and I'm sure not at all coincidental) that we were thinking about the same things.

* A side note before I get into all of this - I think Jill is one of the most courageous, honest, and amazing people on the face of this planet. I won't say she's strong or an inspiration (because I know that she doesn't feel like it), but I admire so many things about her, probably the biggest ones being her transparency and ever-growing faith (no matter how that manifests itself, Jill). *

I was talking to a friend the other day, and she said she doesn't think God performs miracles like He did back in Bible days. She said she thinks He did it that way back then to confirm the Word and that Jesus was, in fact, the Son of God.

I hope that's not true. I NEED to believe in miracles. And I'm not talking about a Stepladder Babies sort of miracle or even a Gabe's Message sort of miracle. I'm talking about an out and out God snaps his finger and takes away Jonah's EB sort of miracle. Because, honestly, I think a miracle from God is more likely than a cure. I'm not trying to be a pessimist or a defeatist, but if Jonah has the most rare form of an already extremely rare disorder, why would the research money go to curing his type? (Junctional is only 10% of EB cases.) And I know about the bone marrow transplants that are being done (and successfully so), but that's only for Dystrophic and, right now, only for kids who have a sibling match. And bone marrow transplants are no joke. They are dangerous and risky and no easy fix, to be sure.

I beg God for a miracle all the time - complete and total healing. I know He can do it, but will He? And I feel like I have so much faith that He can, but I often doubt that He will. I think about having faith like a mustard seed to move mountains, and when I think about that verse, it really does make me think that maybe He doesn't do that kind of miracle still. Because I feel like I have at least that much faith, and here Jonah is... so sick. And if He does still do that kind of miracle, who gets healed and who doesn't? Why hasn't he healed Jill? Why is Stellan still sick? Why did Kayleigh die? I know that my human understanding just can't get it. I know I'll never understand all this pain.

I just want to scream at all those Bible people who, no matter how many miracles God did, they still doubted. I mean, he parted a sea for crying out loud. He healed the lepers and only one came back. I would do anything for God to heal Jonah. I would dip him in a river seven times, I would lower him through the roof, I would travel across the world, I would crawl to touch the hem of his robe. He could do it in person. He could do it from afar. I would believe. I do believe.

But I still don't get it. Is it selfish to pray for healing? For a miracle? How do I pray, "Your will be done"? That is so scary to me. I know that's what I should pray, but rarely ever do I have the guts to pray it.

So in the meantime, I pray that God takes Jonah's pain away, that his face will continue to have more good days than bad, that he'll eat, that he'll resist infection... that we'll be strong enough to persevere... that we'll be able to do enough to keep him safe.

And of Him who is able to do immeasurably more than I can even ask or imagine, I ask for a miracle... even if it is selfish or not in line with His plan for Jonah, one thing I know for sure is that He understands why I have to ask anyway.