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!