God sends us who we need...

Like Levi's physical therapist. She has been an amazing person that not only shows love and kindness to Levi, but also to me. Unfortunately, that's not always the case with people that we come in contact with in the healthcare profession. I feel so blessed that she is not only a mom that has experience with an ill child, but a woman of faith that reminds me how blessed I am. I hope that one day I express that much love and kindness when sharing our story with other people.

From Jackson's Mama...

Another Kidney Mom posted this about 18 months ago when her son was only 3 months old. This is a very accurate description as to what it's like having a sick baby. Want to read more by her? Jenn blogs over at the J's.


So we were looking back at pictures of Jackson tonight and it kind of hit me...

having a sick kid is really quite terrifying!!!

You double guess everything...

You think that any change in personality is a "problem"...

You hear things...

like about a 3 year old hearing for the first time

and you feel grateful that he has heard my voice and my HORRIBLE singing all this time


and  you hear about a 4 month old going home for the first time after abd surgery
but will live (God-willing without any difficulty)...

and you think..

is he REALLY that sick...

but YES...

he IS that sick and

yes, he DOES need you to be paranoid

and YES he does need extra special care

and you realize...

my life is not like yours...

my kid is NOT like yours...

I AM NOT LIKE YOU!!!

I AM his eyes,

his ears,

his mouth,

 his voice,

 his changes,

 his spokesman,

 his survival...

I AM HIS MOM.

I did NOT ask for this,

I do NOT want this,

but this is what I am...

it is more than I thought I could be,

it is more than I wanted to be...

I am lucky enough to hold this position

and I am grateful...

God has led me through the past years to gain knowledge through my work,

to marry a man who speaks his mind

and to learn how to speak up...

I AM JACKSON's Mom

and I LOVE every  minute of it!!!

Exactly. That is my life. 

Levi 2 days old in the NICU at Children's Mercy. See how tiny his legs are next to John's fingers?

Christmas, December, and 2013

Sidekick had his first Christmas this year, and he LOVED it! He was so excited that we got him so much wrapping paper!

Daddy and Levi opening presents

Mama and Levi

Playing Piano with Daddy

Hanging out with some of our cousins!

I got to see Scout! Can you believe we're only 8 months apart?

Driving Grandpa's Tractor with Daddy

Practicing my walking and talking

Worn out from all of these baby adventures!

 

We had a really great Christmas and a fun New Year! Our whole family is so blessed by everyone that helped us get through this last year, it was a tough one! We're excited to see what God has in store for us in 2013, hoping that this is the year for transplant!

Oh Baby Boy...

This was how Levi looked the day that we got discharged. He was skinnier than I had seen him in a long time, had tubes coming out of him, bandages, and he was pale. And you know what? I wouldn't trade it for the world. I know that I always say this, but I feel like God has seriously blessed us with this baby boy. Because we ended up in the hospital for so long, I got to hang out with a friend (because they got admitted as well), spend some quality time with my son, watch A LOT of trash TV, and have some much needed quiet time every night. Those are things that I don't always get to do. I'm thankful that I did. I was also scared. Seriously scared. So far I have never seen Levi as sick as he was this time around. I try not to dwell on the negative with Levi, but I also need to be able to admit that I was scared. I didn't know what was going to happen. I know that Levi looking like he does now isn't going to be the worst that we ever see, but so far it was. He dropped down to under 13lbs. At a year old, he was 12.6lbs. Yikes. Today we were back up to 13lbs 10oz, praise God! I love this baby boy and being his mama more than anything in the world! Thanks for all of the prayers during our hospital stay, knowing of your prayers helps us get through the tough days. That, and good books :)

Hospital Time... Week 2

Levi is back at Children's Mercy. Tuesday, the 20th, we came to KC to pick up Mom from the airport. Levi was supposed to have a routine check-up for his surgery on the 27th. While we were all at lunch, Levi started to get diarrhea. It got really bad, quickly. I called his Pediatrician at home and she told us to go the ER in Kansas City. Once they drew labs in the ER, things went downhill quickly. His labs were all sorts of funky. Nothing looked like what we were used to, even for a "sick" Levi. We were admitted immediately and they started fluids. They diagnosed Levi with a virus that took a nasty turn, very quickly. After a few days of slow feeds through his g-tube and fluids through his IV, we decided that Levi's bowels needed a rest, he was starting to lose the lining of them! On Tuesday, the 27th the doctors decided that surgery would still be too risky and that we instead needed to put in a PICC line. They got that placed and he started to look better right away! Yesterday the team started him on very slow feeds through the g-tube. He seemed to tolerate him pretty well, so today he got to drink some water and get a little more through the g-tube! Tomorrow he should get to eat a little more, with hopes of eating by mouth by Saturday! Once everything is stable (diet, labs and output) they are going to place a port. That will save us a lot in the future! This mama is ready to go get home to everything there, so I would personally appreciate prayers for a speedy recovery so that Levi and I can be reunited with our home, our pets and John quickly!

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.