Ministry through Mary Kay

I want to share a little bit with y'all as to why Mary Kay is important to me. Mary Kay is my opportunity to stay home with Levi. We know that a point in time will come (maybe has come?) when Levi will require more intensive care than a daycare can provide. When that time comes, I still need to be able to help support our family, Mary Kay is providing me the chance to put God first, Family second, and career third. God has also provided me with an opportunity to use Mary Kay to help other families. Through facebook, I have also gotten to connect with other Kidney Mamas. As I get to know these moms, I realize that I'm not the only mom that feels alone. Many of our husbands have to go back to work while we're still in the hospital with our babies. Some of us have to be the bad guy that hold our child down 5 days in a row for blood work. And let me just tell you, it sucks. My goal is to be able to have a successful enough business that I can donate items for fundraisers for our kidney babies, and also to be able to afford to travel to meet these moms, and help raise awareness about Kidney Disease. I don't ever want to hear about a mom having to hear bad news, go through a surgery, or endure a hospital stay alone. Finally, I want to help empower women. I truly believe that women can accomplish anything that they set their minds to. I want to help other women reach their potential as mother, wives and servants of God. I also want to help women feel their best. And as y'all know, when we look better, we feel better! So, if you have questions about my story, about how Mary Kay can help you and your family, or the Mary Kay opportunity, please don't hesitate to ask.

Picture of Levi and I that Levi took with my computer today :)

Kansas City, Again

What started out as a normal trip to our pediatrician ended us on KC. I took Levi in because his g-tube was leaking from the hole that the mic-key button sits in. When they weighed him at the pediatrician's office, he had lost 4 oz over the weekend. Because of that, combined with the leakage and dehydration, we decided that getting him admitted was our best course of action.

Since being at Mercy, we've seen a huge improvement in Levi's attitude . Unfortunately, his weight has remained about the same, and we're still seeing skin breakdown and leakage around the mic-key.

I know that we're blessed to be in such a great place, but I just want my baby to feel better, and I want to go home.

Talking to Adults

After talking with another Kidney Mama last night, I realized something, we all LOVE talking to adults! What's even better, talking to adults who understand what you're saying. Many times when I start a conversation with another adult, they can catch everything up until they ask the dreaded question, "How's Levi doing?". I'm glad that you asked, really I am. The problem is, I can't tell you the truth. If I could put it into terminology that you'd understand, without making his case sound like a disaster, I would. If I could tell you things about my son, without you feeling bad for him, and tell you how bad things are in a way that you'd see the same amount of hope that we see, I would. But, I can't. Because of this, many days the nurse at Levi's doctors are my best friends. When they ask, "How's Levi doing?" and I give them the grim outlook, they still see the hope and get excited with me because he's gained 1.5oz in two weeks, she is always genuinely excited. She's also not afraid to tell me that sometimes, it's just not enough. I'll tell you, I cannot wait for the next "phone date" that I get with the Kidney Mom that I talked with last night. After knowing this, I also want people to realize how important is is to keep asking us how Levi's doing. Even if you don't understand a word that comes out of my mouth, I need you to ask. I need you to pretend like you know exactly what I'm talking about. That's how I'll get through this. A lot of prayer, friends and support.

10 Months

Yesterday Levi was 10 months old! It's been a busy ten months! My sister, Mary is back from South Korea. We're all thankful for that. We love it when she's home. I got to see a few "old" friends this past month. Both of them were from my college sorority days! I am so blessed to still have them around and in my life. Tonight, John and I get to go on a date! WOOO HOOO!! Levi is going to Parent's Night Out at the YMCA. Levi is very close to crawling! I can't believe it. He knows the basic concept, but has a bit of trouble getting all of his limbs to work together and support his weight the whole time. I know that he'll have it in no time! I found a group on facebook that's all Kidney Moms, and i am SO glad to have them. They know what we're going through! Not much to report on the Kidney front here. Hopefully we'll have some good news in two weeks for his appointment. I also will (hopefully) have an exciting blog coming up on Monday night or Tuesday. I can't share all of the details yet, but I will soon.

Yes, we can

That's what I want to start SCREAMING at people every time they tell us "you can't do that". I am getting tired of how negative a lot of people are towards us. They're negative about us having a sick kid, living in an old house, not making millions, being content with what we have (most of the time), not trying to get out of Salina. I'm just tired of it. I want to have people around who are the type of people that rejoice with our triumphs and weep with our sorrows. We are going to do what we feel is right for our family, and I'm sorry if people don't agree with it, but that's why it's OUR family, not YOURS. We have a sick son. That's most of our energy. So yes, other areas are going to slack in our lives, so that we can give him the best life possible. We have to make decisions based on what we believe, what we like, and how we feel. I know that God is going to take care of our family, no matter what. I trust that. I also know that in the end, those that love us will be there, and still loving us.

9 Months/Kidney Disease/Training Buddy

I'm going to try to make this post quick!

Levi was 9 months on Tuesday!!!! I can't believe it! I'm totally that mom that's thinking "It seems like yesterday...". I'll get the 9 month photo up ASAP. Stats will also go up on Monday, that's our follow up appointment for the feeding tube.

I had no idea how bad kidney diseases were in our country before Levi had them. I don't know if that's naive of me, or if it's just something that's hard to diagnose, therefore hard to publicize? March is Kidney Disease Awareness Month, and I'm thinking of something BIG! I'd like to get other kidney mama's involved. I would also like to start devoting more posts to kidney disease awareness.

I keep putting off starting to run again. I tell myself things like; no time, it's too hot, I don't have a training buddy, God didn't create me to run, why should I run? Well, this week God whacked me in the face with answers to my excuses! The weather has gotten beautiful! We're up every morning kind of early, so we'd have time to jog outside, also, I have a FREE gym membership. Duh. As for a training buddy, I have Levi. Jogging with him in the stroller is good for him too. He loves it! So, I'm going to start Couch to 5K again. Also, God may not have built me like a runner, but He gave me a son whom may require one of my kidneys one day, and I need to be healthy enough to give it to him.

The food is in!

Levi finally has his feeding tube! I know this sounds like an odd thing to be excited about, but, we are! He now has an easier way to get the nutrients that he needs into his body. This week was a long week, since we spend Monday-Thursday in the hospital. Monday morning we had to be at the hospital, in Wichita, by 6:30am. My good friend, Meghan and her daughter (4 months old), Eisley, came with us. They picked us up from our house around 4:15am. We ended up at the hospital WAY to early, which was fine. That's better than being late! The procedure was scheduled for 8:30. Here is a picture of Levi right before surgery

As you can tell, he has no idea what's about to happen. They got him back, Pastor Kent came up, and we all waited around. It was a relatively quick surgery, only about an hour and a half. After surgery they stuck him in the PICU for about 24 hours. Then we moved to Peds, once we were there my sister-in-law, Allison came up. This was on Tuesday. I spend Tuesday-Thursday night in the hospital. I don't think that is something that I will ever get used to, no matter how often I do it! They released us on Thursday afternoon. We now have to feed Levi every 4 hours. What he doesn't take by mouth, we push through the tube. Overnight he gets a continuous feed through his tube. Part of that means I go to bed late and get up earlier. If you know me, you know that's not a good combination for me, I need sleep! In a few weeks, Levi and I will go back to the doctor and get this tube taken out, and then get his Mic-Key button put in. That will be much easier to use than this current tube is.

John is doing GREAT with the tube feeds. He helps me out so much. He was at home this whole week, and I know that could not have been easy for him.

We are blessed beyond belief to have the friends, family, and church that we do. They have helped us pull through this procedure, as they will the rest of them. I cannot emphasize enough to people how important a good, strong, supportive church family is. At a time like this, they gather and strengthen us with their prayers, gifts, and visits. I sometimes wonder if God really has us in the right place, but when they come together for us, I know that He does.