Catch Up

I feel like I'm constantly playing catch up on here! I can't seem to every post enough stuff! I think part of that is because the kids are growing so quickly. Levi's doing great right now. He started dialysis in January, and we have seen an improvement in his energy level so far. He's held his weight for over a month and a half now, even after having to take a day or two off from his normal feed schedule! This is a huge accomplishment for Levi. Lydia is a giant. At least, I feel like it next to Levi. She had two teeth pop through this week and she is as cute as ever! She's pulling herself into a standing position and can stand for a few seconds at a time. John's still enjoying his new job here in Oklahoma, which is a great blessing for all of us. I'm taking time to get to know our church better, and make a real investment in our doctors this time. Sometimes it's tough to find the balance between being an advocate for your child, and steamrolling the doctors. I'm making a conscious effort to apply myself to our research and make sure that we have a voice with the doctors. Currently, I'm also involved in our church's women's bible study. We're going through a book "What's it like to be married to me? and other dangerous questions" by Linda Dillow. I highly recommend it to any married woman out there!

Coming up with Levi

This next week is going to be nuts. I'll start from the beginning with last week's information.
Last week we went and saw a new urologist. This was our first visit past the "meet and greet". This urologist, Dr. P, decided to run some tests that we had never done before. Through the testing Dr. P found out that Levi's bladder doesn't hold even half of the amount it should. They expect a newborn baby to be able to hold about 3 oz of urine. Levi, as a 3 year old, should be able to hold at least 5 oz of urine in his bladder. Levi holds about 2 oz. The rest of it gets pushed up into his kidney. This was something that we expected to see. What we did not expect is what came next. We also found out that when Levi goes to the bathroom, he only empties out about half of the urine that is in his bladder and kidney. Therefore, his bladder and kidney almost always have old urine sitting in there.

After learning all of this, we also decided that a transplant won't stop this from happening. They expect that his bladder will grow a little bit with a kidney transplant, but not enough in Levi's case. This leads us to what is coming up, this next week Levi will be having surgery to fix this. The surgery is called a uretal/bladder reimplantation. I've gone ahead and linked that so that you can look up more facts and information. We will also be putting in a dialysis catheter. Not because he needs dialysis right now, but because he is borderline needing dialysis. As his parents, we would rather put him through just one surgery and do both of these things then have to open him up again. If we don't use the catheter, that is fine, we can remove it at the time of transplant.

Our hope and prayer is that this will help solve issues that could arise again after transplant. I am nervous, especially this close to Christmas. We should be able to go home a day or two after surgery. Please pray for peace for our family, and for the doctors over doing this. My anxeity is through the roof on this one. I really dislike having to decide if what we're doing is best for Levi, or if we're just working on borrowed time anyways. I know that God can and will protect Levi during this time and I need to just calm down and THANK HIM for getting us this far without having to do any of these procedures.

Our Big News

We're moving! John got a new job in Oklahoma, so we'll be heading down there! He's going to be doing the same type of work that he does in Kansas, for better pay. We'll have our families a lot closer to help with kids and do family stuff with us. It seems like a lot right now, but I think it's going to be great! And what would a blog post be without pictures, here's a picture of the new house!

I'm excited to see it! I know that this is going to be a great "restart" for our family. I think Oklahoma will be a smart move. The house has more space than we do now, more yard, and I might have convinced the Music Man to get another dog :)

Before I was Mom

Before I was Mom I KNEW things that my kids would and wouldn't do. We've all seen those crazy parents that let their kids get away with murder, and in turn, make those around them want to murder them. I knew that some of those things would be a waste of my breath, and some, I would stick to, no matter what. Boy was in for a surprise.

Before I was Mom...

• I knew that my kids would always be well fed, they'd have enough and it'd be healthy.
• I vowed that we would eat at home as often as possible
• I knew that I'd find the perfect daycare provider so I wouldn't miss a beat at work
• I promised myself that my kid would never get away with things, even in public
• I promised to keep my house clean, and to pick up toys every night
• I knew that I would never let my kids sleep in my bed
• I was going to keep them on a schedule, they needed to fit into my life
• I was still going to see all of my "pre-baby" friends
• And most of all, I'd raise them to love the Lord.

Then I had a sick kid.

Now that I'm Mom of one perfect boy, and one baby girl on the way I've learned...

• I'm lucky if my kid eats anything. Tonight a piece of cheese was a huge win
• I'm thankful our town has more than one McDonald's, so I don't seem like I go to any one too often
• Work wasn't worth it. Between doctor's appointments and Levi being sick, home is a good place to be
• Levi totally climbed across a table at a meeting tonight. And I wasn't even mad. 
• My house isn't clean. It never is. There are toys everywhere. But it's home.
• After getting up 3 times before 4am the other day, Levi ended up in bed with me.
• The only schedule we keep around here is Levi's feeding and medicine schedule.
• I'm glad most of my friends are having babies right now, then they still want to hang out with me
• We are raising our children to love the Lord. If there was anything I was going to get right, I'm glad this was it.

I'm not always a good mom...

I'm not. There it is. I said it. I'm really bad at some "mom" things.

• Mostly housework. I hate cleaning. That's not an understatement. I actually hate cleaning.
•  I forget when it's snack time. We've been on tube feeds for so long that now that Levi's started to take in some of his nutrition by mouth, I can't figure out for the life of me why at 4:30 he's screaming in the kitchen. Oh yeah. He just wants a snack.
• Remembering to schedule play dates. I live in this world of "I have a sick kid". I forget that sometimes he likes to be normal and play with other kids. Whoops.
• Washing diapers. There's always only one left when I finally get around to it. Then it's dirty and I still have 2 more hours before the others are clean, so we have none. 
• Not watching TV. Especially when I'm cooking. I like to watch netflix at the end of the day, but Levi needs that time more. 
• Baths. I hate bath time. Levi loves it. I try to make it as quick and as painless as possible. Levi wants it to last as long as possible.
• Did I mention cleaning? I hate cleaning. 

There it is. Honestly. 

Grow, Baby, Grow

Levi's not growing. At least, he's not growing enough or very well. He's only gained 1/2 lb in 4 months. That's not enough. We head in to KC again tomorrow to try to figure out a new game plan. Please pray for the best outcome and that the Lord will show himself during this struggle.

2 month catch up!

I've sat down to write a blog many times over the last two months. And something always seems to come up instead of writing. Usually it's Levi wanting to play, which I don't mind.

A lot has happened over the last few months, Levi is up to 16lbs 12oz. We've had snow and summer hit all at once it seems. I'm filling in a few days a week at the YMCA again, which means Levi is hanging out with Aunt M or in kids gym. Both seem to be good for him. And we've taken a lot of pictures. It's probably just easier to put those up so you can see what we've been doing...

Levi trying on some bunny ears before Easter

Easter Day family picture at church

Tilled up (and now planted) our garden plot!

Played at the park

Sleeping like a rock!

A few small hospital stays, but nothing major, doesn't he look BIG!?!?!?

Went to Texas to visit my parents!

Went to Galveston and Levi saw the beach for the first time!

Got to play with Popcorn, a lot

Found out Levi is allergic to penicillin

Had breakfast with Aunt Pat in Texas

Mom, Julia and I painted these, we had a great time!

Hung out with friends in Texas

Rocked the shades

Came back to KS and the next day it SNOWED (April 23), but this still wasn't our last snow of the year

We've been taking a lot more time to just "hang out" as a family :)

That's right, Levi is EATING a little bit!

Went to the All Schools Day Parade in McPherson with Aunt Kelsey

John got a new carrier to wear Levi

Went bowling with our young adult group at church, and Levi got to hang out with a friend, too!

 

 

 

That's been our last few months in a nutshell. In there we also had the baby shower for Kelsey, Levi had his first "big" injury. He fell in the parking lot and it ended up with a hospital stay overnight, everything was fine, but I was one freaked out mama! We had a wonderful time in Texas, and Levi and I really enjoyed spending time with my family.
On Friday we go to KC to get the "real" answers of how Levi is doing from the dr's there. So pray for good results!
I'm training to run a half marathon in October, which my sister so kindly signed me up for. It's a long road, but Levi seems to enjoy being my "training buddy". Really, he just rides in the stroller and then gets mad when I don't go fast enough for him. Other than that, we're just enjoying the start of summer!

A Big, Good Weekend

We had quite a busy weekend! We went to Omaha this weekend for two reasons, first, to see John's side of the family, and second, it was Mary Kay Career Conference. I learned a lot at the conference! It was great to hear success stories and struggles of other consultants. I also learned that I have a stronger love for my job than I thought! I feel so blessed to work for a company that starts a conference in prayer and encourages everyone to share their faith story. I know that God has placed me within this company to help share my faith story with other women. I cannot wait to help other women experience the Mary Kay opportunity and learn more about themselves. Here are my pictures from this weekend at the conference.

New Trench Red Jacket

 

New Cropped Red Jacket

New Classic Red Jacket

Our team this weekend L to R: Margo, me, Mary, Rita, Lizzy and Brenda

Mary and I before Friday night's session

And here are some pictures from the other half of our weekend, family time! And the drive home, which was crazy with all of the ice!

Levi with his bagel

Mary Sleeping

Levi sleeping

John and Levi

Mary being Napkin Face

Ahh, spring weather

This spring weather, even if it's just a teaser, has been wonderful! In the past two days Levi and I have walked about 7 miles outside and I've jogged 1.25. Loving it!

It's only 11am?!?!?!?

It's already been one of those days. Today started out like any normal Sunday, John got up before the sun to go to church to practice, since he plays the service today. I got up around 8 (thanks for letting me sleep, Levi!) got showered, then did some stuff around the house. Once Levi got up we did his normal morning stuff, baths, playing, singing, etc. I put Levi down for his normal before church nap and kept piddling. Everything seems good so far, right? Now it begins. John called around 10:40 to make sure that we were coming to church and I confirmed that we were. I began to get Levi and I's stuff ready for church. I couldn't find my keys. Called John, he had no idea, kept searching. Pop past Levi's room and hear him playing. Nap did not happen. Get Levi out of bed and put him on the floor while I keep searching for missing keys. Head into Levi's room to see if keys got put in there and I hear Levi in the kitchen. Then I hear the dog's water, and no dog. Go into the kitchen and Levi is covered in water and is putting cat food into the dog water. Move Levi into another room and keep looking for keys. Finally find keys under John's shorts on the couch in the living room. Yay! Go to find Levi and he's back in the dog water. COVERED. We have to leave for church, decided that I would just change him right when we got there. As I'm putting him in his carseat he proceeds to poop, big, stinky poops. Gross. Go to start car and the car won't start. Try again, and it still won't start. Then the horn starts going off. Argh. Get the horn stopped and realize that the battery is way dead. Get baby boy inside and change him and he is covered in poops/blood. He's had a yeast infection because of the meds, and the poops mixed with that caused some open sores that started bleeding. Got that taken care of and got him in his crib and started a feed. I feel very done for the day. I've had to say some very big prayers that God will handle my emotions, thoughts and actions today. More so than other days. All of these things that happened were more or less out of my control. I know that there's a lesson in this somewhere. I'm just going to wait and see and hope that He shows me his plan. And I'm just sad that Levi's bum hurts. It breaks my heart to see Levi in pain.

Surgery Tomorrow

Tomorrow is surgery day for Levi! He has his hypospadias repair (fixing his boy parts). They have scheduled 4 hours for this surgery, which makes me a little nervous. Luckily, we will be at CMH, and they do a great job with everything! Another bonus is that John will be there as well, so we can all rest easier. It makes the entire surgery process much calmer for everyone when John and I can switch off sitting in the waiting room. For most of the time we'll both be in there, but CMH has a rule that you must have at least one parent in there at all times. So, if you're the only parent there, it can be a long four hours. We're leaving tonight and hopefully staying at the Ronald McDonald house. The nice thing about staying there is that we don't have to worry about being out by a certain time. Another bonus about this surgery is the peace that I feel. I've been praying for days (okay, weeks) that God would give me peace about this surgery. This one has been bothering me, and I'm not quite sure why. But, after spending a lot of time in prayer and listening to more Jesus tunes than normal, I do feel His peace.

Past surgery coming up, we're having a few new experiences, Levi got an upper respiratory infection that has to be cleared up by tomorrow morning! So we've been doing breathing treatments three times a day. Levi has gotten used to them, because we let him watch Shaun the Sheep while he's doing them. Although Levi does still seem to think that it's fun to pull the mask off and then laugh only to put the mask back on.

John and Levi doing a breathing treatment

One thing that we're finding that is odd about Levi is that when you judge his age by his size, he's only about 6 months old. When you judge his age by his gross motor skills, he's about 10 months old. When you judge him by how ornery he his, he's definitely 15 months old!

See what I mean?

We also celebrated Valentine's Day this week. We don't usually do much, John got his usual gift of a card, candy and shotgun shells. He was happy. I got flowers, ITunes gift cards and we all went out to dinner. I would say great day!

Happy Flowers

Anyways, I think that Levi's starting to stir for the morning, so I'd better go grab breakfast while I still can! Thanks for the extra prayers tomorrow, they mean so much to us!

Levi's favorite times of day are when all three of us are just hanging out together. We don't even have to be doing anything. He just likes it when he can be laying on Daddy and touching Mama's arm at the same time. Those times, where he's so content with so little, remind me that I have everything I could ever want.

God has blessed John and I with this son. We need to protect him, advocate for him, love him, and teach him the ways of the Lord.

Pictures.

Here are some of our newest and favorite pictures from this January/February! I LOVE how big Levi looks! Hope things are going as good for you as they are for us!

Levi playing in his room, he's suddenly decided that he actually does like it in there!

Sunday family pictures. We all did the same face on this one :)

Levi Rocking out in his high chair

John, really excited that OSU beat KU

Levi and Eisley playing outside together, IN JANUARY!

Levi trying to find more fries in the box. He likes to chew on them.

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!