Damian Update

If you saw the Instagram post from yesterday, you know Little Man has been having some issues. I hope to keep you updated so you can continue to pray for him. 

A little background... 

Damian has Biliary Atresia--a rare liver disease in which the bile ducts going from the liver to the intestines disintegrate. He was diagnosed at 2 weeks of age and at 3 weeks had a surgery known as a Kasai Procedure in which they take part of his intestines and make a new duct for bile to drain through. Praise God Damian's liver seems to have responded well to this surgery. Every 6 months his liver levels are monitored and they have always been relatively stable. We hope this means a liver transplant can wait a nice long long long time from now. However, I've been given a short list of things to keep an eye on as they could be signs of complications that can arise when one has a compromised liver. These things include a sudden, unexplained fever (from a potential bout of cholangitis,) blood in stool, spitting up or coughing up blood (from potentially bleeding varices caused by portal hypertension,) etc.

So what's been happening... 

Yesterday Damian began experiencing "some bathroom issues" with what appeared to be a decent amount of blood in it. I knew this was a sign of bleeding varices so I immediately called our pediatrician, and he got us to come in right away.

Crazy kid is just happy to have a lollipop

He confirmed it was definitely blood, and we spent the rest of the morning and early afternoon trying to figure out what the GI Team at the local children's hospital would like for us to do. I kept saying if I don't have a "plan" by 3pm I'm taking him to the ER because I know that early intervention is key as far as limiting the damage done to his liver, and I was starting to get a little mama bear crazy.

Thanks wifey for finding something that accurately depicted my mood

Normally I do a decent job keeping my whits about me when stuff happens with Damian, but we had still not been able to get into see the new GI/Liver Team here since moving back in February (that's another frustrating story for another day) and I didn't feel like I could "trust" these doctors yet. 

Anyway, a little before 3 o'clock I hear from the GI team and they would like to see him at 8 am the next day (today.) I questioned whether or not he should be seen sooner and they made it seem like it was up to me as to whether or not to take him to the ER. (Mama Bear be annoyed at this point.) So I promptly called our old GI who recommended we take him in, if he had another "episode with blood in it." Thankfully Damian didn't and we went to the GI today. The doctor explained that while it could be varices, Damian would likely also be spitting up blood as well since varices tend to bleed a lot. Also his liver and spleen felt fine, so he's hoping that's not what's causing it. We did blood work today, and the results should tell us (based on his cell counts) how profuse the bleeding is. If it is profuse (or the episodes continue,) then we will be scheduled for an emergency scope to determine the source of the bleeding. If his numbers come back fine, we will schedule him some time in the first week July to have the scope done. 

The doctor is speculating that it may be hemorrhoids that formed at the site of the new bile duct created during the Kasai Procedure or something else going on in the large intestines. Neither are life threatening, but both would require a minimally invasive surgery to correct. Or (although I find this unlikely judging by the fact Damian is acting like he feels fine) he's having a bacterial infection of some sort. 

So if you could, please keep him in your prayers that it's only something minor, and that it's an easy fix! As of tonight, we haven't heard back about blood work so I will keep you posted once we hear something hopefully tomorrow. 

Thanks again for all the kind texts, comments, etc. We really appreciate them!

7 Quick Takes

Normally when I do these post I go through my phone and look at all the pictures from the week to remember what seven things I should quickly tell you about. This week the pictures have been nothing short of random... 

1.

Two nights ago, a family member drove by our old house in Atlanta and sent us a picture of our once pink house. It is now a very TEAL teal. This caused me a large amount of sadness as that was OUR HOUSE! It's supposed to be PINK! I'll never see it PINK again! EtcEtc. And so of course we all took a trip down memory lane and google street viewed it. And then realized that I AM STANDING OUTSIDE THE HOUSE ON GOOGLE STREET VIEW!!!!???!!!?! Creepy.

2.

Sorry for all the yelling of the last take, I'll try to take it down a notch with Clare sleeping in her crib. Oh her hair!

3.

I hate cleaning our shower, which if you look at it, is very apparent. However, I saw this in Target the other day. I want it. Anyone have it? Is it as wonderful as it seems?

4.

I checked a bunch of books out from the library, one of which was about homesteading. At the end, it had this gem... Anyone want to start an Intentional Community with me? I will provide the bandannas.

5.

Nate wanted me to take a hipster foodie pic of Damian's 5-star dinner the other night because it looked so...spectacular... I never got around to editting it. If you are wondering, he ate approximately -1 bites of it.

6.

We made more laundry soap, and surprisingly no one got a shot of Borax to the eye--even with Damian whisking.

7.

I have nothing else for this last one here, other than to say thanks for coming by the blog. I really appreciate all of you readers and followers. Thanks to all the sweet comments, texts, and emails from my last post. Those really meant a lot to me! If you haven't left a comment before, I would love to know you read and introduce yourself--especially if you have a blog. Thanks to the Bloglovin' app, and Clare's love of snuggling, I'm back on the old blog reading horse!

Linking up with Jen

A Letter to My Daughter

Dearest Daughter,

This letter is for when you are older, but I don't want it to come too late so I'm writing it to you now. 

I want you to know a few thing about your mom. 

When we heard "It's a girl!" I could barely contain my excitement. I'd finally get to do all those girly things like bows and ruffles and dolls. Your grandmother is my best friend and I had always hoped that one day I would have a daughter to share that relationship with as well. And as we continued to prepare for your arrival, my excitement still grew but I began to realize more and more what having a daughter, especially in these times, would mean. You see, the world is a tricky place. As a woman, you are lucky to live in a time where you can do and be whatever you want. A mother, a doctor, a teacher, a politician? Go for it! I hope you find your passion early and give it your best shot. However, there's a darker side of this world in which we live. One where sin prevails and a woman is objectified and misused with little thought to her as a whole person. Just walk down any magazine aisle and read the headlines. It's all about how you look, how sexy you are, what you can offer to your man. And while I may tell you your worth is so much more than that, I know the world loudly shouts something else. 

And then Sweet One, I had you and watched you start to grow. You are absolutely beautiful to me. No really, you are stunning. And the more I thought about how the world might make you feel otherwise, the more angry I became. Not at the world, love, but at myself. For women are the ones that have allowed this to happen. We were the ones that bought that lie. We're the ones that kill ourselves trying to look a certain way, complain about our worst features, and dream about what it must be like to be just one size smaller or one inch taller or just a little bit curvier. 

So I began to think about how maybe I could save you from all the pain so many women go through. I could keep you in a bubble, never exposing you to the world, but there's so much good out there I want you to see too. Maybe I could try my hardest to protect you from bad influences and just never let you out of my sight. But then how would you learn to be independent or grow from mistakes? I don't want to save you from every fall or broken heart. It was then I had the scary realization, that all parents do at some point, that I can't control your life forever and at some point I will have to let you go. All I can do is give you the tools to survive. 

But I don't want you to merely survive, I want you to thrive. There must be a better way for a woman to live than constantly obsessing about how she looks. But isn't that what we women do?  Why is that? Where do we learn that from? It must be from other women. When I came to that conclusion, I decided that I would try with all my might to teach you something different. I can't control the world, but I can control me. Maybe, just maybe, my influence would be enough to give you the strength to not buy into the image obsessed culture in which we live.

My words will never be louder than the culture's, but I hope my actions are. So I want you to know...

When you see me running and working out, it's not so I can fit into size 0 jeans or have a bikini body. It's because I love fresh air, the feel of working for something hard, and I want to be good to this body God has given me. I do it so I will be around for your children, and God-willing, your children's children. 

When you see me eating a salad or choosing a healthy food option, don't think it's because I'm deathly afraid of cellulite or gaining a few pounds. Know it's because eating the natural things of this earth remind me of how blessed we are to be able to have good food that nourishes our bodies.

When I put on make up, please don't ever think I don't like the way I look without it. Just as I like nice clothing that flatters my body, I enjoy having fun with make up. But if I ever thought it made you think you needed it to be pretty, I would throw it all away in a heartbeat and never wear it again.

And when you hear me talk about myself, I hope you never hear me complain about the way I look. How could I not like so many of my features that I see look so beautiful on you?

I hope you learn to value looking beautiful rather than "looking hot." I want you to enjoy good chocolate and a fine wine while knowing moderation and temperance. I want you to know the virtues because you were raised surrounded by them. I want you to know you are loved. I want you to know who you are and what you stand for and to never waiver in either of those. I hope that if I can teach you only one thing about being a woman, it's to see yourself as God sees you and to be grateful for this body of yours. 

I love you my beautiful girl,

Mom

7 months...

Dear Clare,

7 months... Per the norm, this past month was a lot of fun! You've done so many new things, and I'm starting to worry my days with a "baby" are number as you race full steam ahead to toddlerhood. I blame Damian (as we usually do when you start to cry) because you are sooo intent on keeping up with him. I understand, he is a lot of fun. But darling, I don't know that your mama is ready for it all. Let's just go ahead and recap this month shall we. This month...

You started crawling! Woot woot! You are on the move and go go go go. After the second day of you crawling around, Damian finally noticed (typical male) and asked "Mama, what is Clare doing?" I said "She's crawling!" to which he responded "No, she's too little to crawl." My thoughts exactly.....

And now that you are crawling, you are pulling up on anything and everything you can get to. It's caused a lot of falls and boo-boos for you. You've probably cried more since crawling than you have since being born. However, you are also pretty good about rolling with the punches and getting back at it after a fall.

Because you can pull up on everything, you also want to walk. You love walking around holding on to our fingers and you take the cutest GIANT baby steps. You've started cruising some on the sofa, and even think it's fun to let go occasionally and see how long you can stand (only a few seconds.)

We went to the doctor last Wednesday, and you weighed in at 20 pounds 1 oz. and 28.75 inches long. You're off the charts for your height; both Daddy and I are tall, so that's not too surprising. He was very happy with all your development and couldn't believe how well you were doing. It was a proud mama moment, even though I know I have nothing to do with it. You're a motivated little girl.

Sleeping... Well girlfriend... It's still pretty inconsistent. We tried for a few weeks to not let you in the bed with us but you kept us up all night (even Damian) and after weeks of no one sleeping, I just gave up. You are definitely teaching me that every baby has different needs... So now you go down around 7 and sleep for a few hours, wake up and I feed you, you sleep until somewhere between 12-2 and then come to bed with us. I'm working on night weaning you in an effort to convince you that mama isn't the only place you can sleep. On a positive note, you have gotten a bit better about naps though and that's been really nice. Usually I can get 1-2 naps in the crib each day, and they can be anywhere from 15 minutes to over 2 hours. So while sleep overall is still not what I would love (you and Damian sleeping in your own beds for 12+ hours every night and napping for hours during the day) when I look at where we've come from since you were born, we are still progressing.

You love to talk and babble. You will say DaDa if we ask you to, and if I ask you to say MaMa you say BahBah which, considering you don't take bottles, is kinda appropriate for me... sigh... I guess that's just how you see me-- a giant bottle.

I bought you some 2nd Foods baby food and you like those much better than First Foods so you will let me feed you as long as you have something you can feed yourself. Therefore most "meals" include a squeeze pouch and finger foods.

You make some of the best faces. When you laugh, cry, or make your "I'm full" face your eyes completely disappear and you become all cheeks and mouth. You still only have your two bottom teeth, but I can see little swollen spots so I think the top ones will be coming in soon. I bought you an amber teething necklace so we will see if that helps.

Now that you are crawling I'm starting to notice that you are understand words/commands. You respond to your name and usually will come to us when we ask you to. It's always fun to realize when babies actually understand much more than you think they do. I'm also able to see what are your favorite toys, which are usually the 'not actual toys' (i.e. shoes, my purse, wipes) and then of course any lego project Damian is working on. I see a lots of fighting in the future over toys. Can't wait...

You hate hate hate diaper and clothing changes. I think you would much rather be my naked baby.

Well, that's about all for now! I'm looking forward to another month with you cuddle bug.

Love you!!

Mama

Family, Sabbath, #SundayFunday

When we first moved into the house, our weekends were jammed pack trying to unpack, organize, and accomplish all our home improvement projects. Nate and I tried to use our time wisely and get as much done as possible since I was useless during the week with the littles. And by the time Nate got home from work, it was bedtime. Power tools + bedtime does not work in this house. Thus the weekend became GET IT ALL DONE NOW time. 

That worked for awhile, until I began to realize it wasn't actually working for all of us. Damian, poor kid, wasn't getting to enjoy his weekends with his family. Sure Nate and I were there, but being there versus being present are very different things. He can only go to Lowes so many times... And watching us paint while watching Mary Poppins for the umpteenth time isn't exactly as exciting as it was the first 3498 times. So I decided we needed a change...

For awhile now I've wanted to be better about keeping Sunday the Sabbath and minimizing the "just another day" aspect of it. Of course we go to Mass so that helps, but other than that, there's not been much different. Awhile back when I was reading St. Therese of Lisieux's Story of a Soul, I was struck by how she described the Sundays of her childhood as little tastes of heaven. And I want that, more than anything, for my kids. So in a more modern hashtag-y kind of way, we started Sunday Funday. 

We don't always do some big, but we try to do at least something fun as a family on Sunday. Sometimes it's just going to a park or for a walk, other times we'll go to the beach or get a meal. Whatever it is, we try to do it together and make sure it's something we can all enjoy at some level. Even the babe. 

Today we just walked around our beautiful city 

and enjoyed the cool breeze coming off the harbor. If anything reminds me of what I hope heaven is like, it's walking around on a beautiful day near the water. It was nice to just laugh at Damian being a nut, 

talk with Nate,

and watch Clare try to play with her brother. It's good to take it slow sometimes. The dishes and laundry aren't going anywhere, and on Sundays, they can wait.