Puddles

First of all I can't say how touched I am after yesterday's blog post! Thank you all so much for the kind words, and helping me get through a rough day.

Today was a much better day.

It was still rainy and gloomy but we got out tonight and enjoyed some mud puddles :)

And everyone now and then I find that picture that takes me back.. And tonight it's this.

Almost two years to the day... Man I love these two!

Life isn't always rainbows and butterflies.....

I've debated and debated about blogging about this. I've started typing it twice only to delete what I had. But I'm not one to sugar coat things. I never have, and I decided not to start now.

It's a rainy gloomy morning and that fits my mood. I'm tired. I'm frustrated and discouraged. I'm scared.

When I was laying down with Lynlee last night at bed I couldn't help relieving the past 3 1/2 hours in one way or another. She is my life. She has made me complete but everything she goes through breaks my heart. I would give anything to take her place. She has gone through more than most and she always comes out smiling and fighting. I have no clue where that strength is from because I'm the one crying behind a computer screen. She was sedated again on Monday. I can easily count she's went under anesthesia at least 10 times. That makes me sad. But she is amazing. She came out of it smiling. She was on bed rest for 4 hours afterward. She slept for 2 of them but the other two she only asked to get up twice and didn't fight us when we told her she had to lay there.

Thank Goodness for a TV and the Disney Channel

Enjoying some chicken nuggets

 

Yesterday when we got the news of rejection I wasn't happy. I'm still not. To be 100% honest that was NOT what we wanted to hear. That was the 2nd to worse news we could have got and it has thrown me for a loop. I know yesterday I said I was thankful it wasn't worse and I still am but it sucks. It does. Sucks! We've back tracked so far. Her rejection medicine is very high now which means she can catch anything. We will have to start all over weaning it down. And her EBV was the lowest it had been since she became positive. We were soo close to getting that undetected.. The high prograf and the steroids will vamp that up fast. It has turned everything we've known upside down and that scares me. The last thing in the world I wanted was for her to reject her liver (even if it's mild) and it's happening.

I know it's not the end of the world and we will eventually be back to loving life. But I'm taking a few days to be cranky and sad. Because, well, I can.

The results are in...

Let me just start out by saying the zoo was amazing! Lynlee did so well in 93 degrees heat. She enjoyed every minute of the zoo. We took lots of breaks, drank lots of water, and had much needed family time.

Yesterday went easy too easy to be exact. They said they would take her back at 8am for the biopsy. She went back at 8:10. This is almost unheard of in hospital time. We had an ultra sound scheduled for 3:40 and they were able to get it done at 11am. We were home by 5:30.

We got the results of everything late this afternoon. Her ultrasound was clear which meant no blockages, but the biopsy did show some mild rejection. The words "barely there" were even used.

So what does this mean...... Well it means they will increase her rejection medicine, and they will add a few more meds to our daily routine. One of them being a steroid. Since it was so mild we can manage it all from home for now. We will have repeat labs next week.

That's basically it. It's pretty simple, and it could have been so much worse. Sometimes when they find the rejection it can be moderate to severe which means multiple days in the hospital and IV steroids. So I'm thankful for the oral meds and being at home.

I'm also thankful for the prayers and support over the past couple days. Our friends and family have been once again more than amazing and we couldn't have done it without you.

Upcoming prodcedures

 

This has pretty much been our week this past week. Lynlee and No-no sitting in the lobby waiting for labs. We've been there twice. Not the best of weeks by all means.

 

We went Tuesday for our monthly labs. After the sticks 1 in the arm and two in the fingers we were finished. I really thought they would be awesome labs this month. Lynlee isn't sick and is eating, and growing and everything that should be happening. Well I was wrong. They are elevated. Higher than they've been in months. So the transplant team wants to do a biopsy to see what's going on. She hasn't had "normal" labs since March so they are concerned.

 

They have everything scheduled for Monday. We will be at the hospital at 6:30am with the biopsy scheduled at 8am. After the biopsy and the great 4 hours of bed rest she will have an ultra sound of the liver that afternoon.

 

We are going up Sunday to spend the night. In fact I think a zoo trip is much needed.

 

We are staying positive since Lynlee went through all of this in February and it ended up being nothing. Ryan is able to go with us this time too, so it makes going a little easier.

 

I'll keep everyone posted and just say a little prayer for everything if you don't mind.. 

Like Father like Daughter

There's always something about Ryan and Lynlee sleeping together that makes my heart full. I love the two of them more than life itself. Lynlee and I are two lucky girls when it comes to that guy..

Sigh...


Happy Fathers Day to all the dads out there.. Especially my dad, my step dad, and my husband!

A little sunshine for you!

I thought on this nasty rainy day I'd post some pictures that make me smile! And before you scroll down remember that Lynlee is still dressing herself these days! From Hat to Shoes.... Enough said