new growth (ugh!)

Yesterday morning Kyle and I noticed Noah's right eye was a little swollen and pushed up. No biggie, but we took note.

Today, still swollen... then when I went to put him down for a nap this afternoon I noticed a new cyst up by his eye; sorta between his eye and ear but lower on his cheek. Not just an old cyst that was swollen. Lymphatic malformation growth in a new area.

UGH! My poor little man! I immediately called Dr. Perkins and he (of course) wasn't concerned. He said unless it starts to force his eye shut, he'll just see us in April the morning of surgery for his tonsilectomy and adenoidectomy. But it's like, really? It made me feel like this lymphatic malformation just has an evil mind of its own, and its goal is to conquer and destroy as much of Noah's face as possible. We've had lots of swelling come and go over the last 14 months, but this is the first time I've noticed actual new cyst growth.

Then I googled "lymphatic facial structure" to figure out how far these stinking vessles go on the face, and where... and sure enough, the majority of them are located on the cheeks and neck, but a few go all the way back past our eyes and in to our hairline. Poor little man! So I prayed over him and tried not to cry while I put my make-up on for work. I looked a little scary! :)

Sometimes I get so frustrated with myself when I let myself cry. I feel like I should've cried all the tears necessary to deal with Noah's condition, especially with swelling and growth. But every day brings new issues and with that new emotions... and today I found myself getting mad at myself for crying. Sounds weird I know but it just gets old. Not that I'm an overly emotional person (well depending on who you ask hahaha, Kyle might say differently), and I don't cry that often about Noah(anymore); but it just gets old sometimes. And I'm tired of it. Tired of crying over the same stuff, and just sad for my little boy. I know he will be stronger because of all this, and has a great miracle story. But still. I just wish this could all be erased and he could be a little boy sometimes. Not that I would change all the growth, depth, focus, and pure joy that Noah and his condition has brought to our lives. Pretty bittersweet.

On a positive note, we returned Noah's feeding pump this week! Such an awesome accomplishment! It wasn't a big deal until I saw it sitting next to the front door with the power chord wrapped around it, all ready to go... I was like, wait... we're really returning his pump today! My mom and I always joked how awesome it was going to be to fill one of the bags with a margarita or some other mixed drink and let it just drip in to my mouth. I never got to do this and I'm a little upset about it! We still use his g-tube for hydration but we're able to do it through a "gravity feed".

We're super excited to go visit my dad this weekend in Olympia. We were planning on going to LA this weekend for my sister-in-law's baby shower, but Kyle just really felt like it wasn't good timing to head down there. So I'm respecting him on this one. Traveling with the kids is so hard, and our last trip down there was just exhausting and difficult for them (shoot, and us!). But since we have the weekend off from work, we're heading to Olympia to hang out with dad on the farm. It's going to be a great weekend, hopefully I'll get some great pics to post!

Some pics just for you, BRE! :)

bad blogging and big eats

No apologies, but seriously. I've been terrible! And there have been so many awesome things going on in the Johnson home!

First off-- Noah and his eating! As I mentioned in the last post, sometime in late December Noah decided he loves food. He can't get enough of it. Our amazing, wise, and incredibly supportive OT Keren has guided us along the path to weaning Noah off of his g-tube for all nutrition purposes; now we only use it for hydration. I was sitting at the table yesterday eating with Noah and just started crying for this reason. I can't believe how much he loves food, is much less picky than Ella (probably just her age, I know...), and just seeing prayer being answered. To God alone be the glory in this amazing accomplishment for Noah! Also, in the past few weeks it seems like I've seen Noah thirsty for the first time in his life! He still has lots of trouble with thin liquids, and he does about as much spitting out as he does swallowing, but he GETS IT. And he gets excited about drinking when he's thirsty. I think the suck/swallow/breathe pattern is still difficult, but he is learning. Such a smart boy. The next step will be to wean him for hydration purposes, but I am in no rush. I am just ecstatic that he is eating so much. I got a text message from Kyle at work tonight that said Noah ate 2 1/2 pieces of pizza. They are small pieces, but still! That's a ton of food, and crust is hard to eat!

Unfortunately January and February were rough months for Noah however. It seems like the kids were sick for months; and Noah ended up in the hospital twice. Plus, when he goes on steroids to control the swelling, it weakens his immune systems and inhibits the body from properly fighting off infection, so it was just one thing after the other. At one point when his swelling was down, we weaned him off the steroids against doctors orders because he just wasn't getting better.

The next plans for Noah start with a tonsil and adenoidectomy on April 15th. We've decided that this is a good next step because it just opens everything up in there, making more room, and for some reason it helps with the swelling under the tongue for other kids with LMs. It makes sense to us. We still aren't comfortable or ready for the big neck dissection surgery that we were planning on this spring. We are continuing to pray about if it's the right timing or not. We know God will reveal himself one way or the other, in his timing!

We know we would like to have most of his LM removed by the time he starts school, and Dr. Perkins will only do one side of the face at a time, with a year's time between surgeries. So we figure we have until he's 3 to start the surgery. I just feel like kids are so mean. When I take Noah in to pick up Ella from preschool, all the kids stare at Noah and even laugh at his big cheek. It breaks my heart. He will have to deal with this is whole life, and in no way to I want to cover it up or make him feel like it is a bad thing. It is a part of him, and God is using him (and his hygroma) to change lives. To change the way people think about things. But I don't think he should have to deal with it at 3 or 4 years old. Crossing that bridge when we get to it! We still have to believe that God is the perfect healer, and by our faith we are healed... but God also gives doctors the wisdom and the tools to heal. Please pray for wisdom and discernment in this area; that God will give us peace whether to do the big surgery. We want to do it before cold and flu season, so if we don't do it by August of this year, we will most likely wait until next year.

Amidst all this, there is Ella.



(Feb. hospitalization)

Sweet sweet Ella.

This little girl is somethin' else. She is absolutely hilarious! And she knows she's funny. So smart, so gifted, I am so proud of her. And the compassion, patience, and love she has learned from having a special brother like Noah. I know it has been so hard on her. But she just shines. With all the flu bugs and sicknesses this winter, we considered taking her out of school to avoid more germs coming home. But we realized how badly she needs that time. My favorite thing is to come early to her school to pick her up, and watch her when she doesn't know I'm there. She interacts so sweetly with her friends, and at circle time I see her daydreaming and getting antsy. So funny. I just love watching her grow up, and I'm so lucky I get to be home (most of the time) and be a part of every moment. I am a blessed woman!

Most of all, Ella loves her grammy. Her grammy is her world-- if she could she would spend every waking moment with her! Second to her, she loves these little "beanie baby" type doggies that my mom gets from the fabric store. They are her babies, its so cute. She's not really in to dolls that much, but she loves to mother these little dogs. She makes beds for them, makes them get in to trouble and she gets to punish them and put them in time out. She loves to draw pictures of our family (I love that I'm always the hugest one in the picture); her latest picture had 3 KIDS on it.

I said, "Who's this Ella?"

She said, "That's the new baby you're going to have!"

"Oh really... what's it's name?"

"Maybe Lightning McQueen... that's a nice name?"

She also loves writing letters and numbers. She can spell Ella, cat, coat, boat, and dog. Her favorite number is still five!

Her other favorite thing to do is make popcorn, hot chocolate, snuggle up and watch a movie. I think I need to start writing down the funny things she says. Some of them may not be blog appropriate though! :) She is super excited for Nana's big visit next month also. Lindy will be coming up shortly after Noah's surgery to help out with the kids for a couple weeks which will just be awesome. It's so hard when Noah's not feeling well. Like all little ones, when he's sick he just wants to be held and nothing else. It will be nice to have her here to take Ella to the park, and of course just hold her sweet grandson so I can get some laundry done!

Other than that, not much is going on. I got in a small car accident last weekend (stupid dingy thing I did), and it's been interesting timing with Kyle and I trying to rebudget our money and just be smarter stewards. It's hard, but rewarding. Oh, and we're going on a Marriage Encounter this weekend in Leavenworth! We can't wait. First time away from Noah overnight... should be fun for my mom!!

Check back soon. I promise I will be better at keeping things posted. Even if its just a picture here and there or a quick Ella-ism!

Big Love, Andie.