Wednesday, May 25, 2011

Wordless Wednesday

I've been thinking about doing this in blog for months now..

So here goes (I know I've already defeated my purpose!)

Wednesday, May 18, 2011

Emotional Rollercoaster

If I had blogged this time last week I would have been sure by today Lynlee would be on the transplant list. We would be waiting for the perfect liver. I would be writing about me feeling scared but confident with the decisions we made. However, this blog is nothing like that.. Let me back up for you.

Last week was busy, long, and very overwhelming. We had appointments every day starting at 8am and lasting until at least 2pm. Some appointments were classes about the surgery, how much it would cost us, how to handle it, and some were Lynlee getting her EKG, ex rays, etc. Other than Lynlee falling in the hallway, biting her lip, and us ending up in the ER the week went off great (no stitches need, just lots of blood.) Ryan and I had left there on Thursday with the decision that we were going to list Lynlee. We felt and still feel that she will one day need to be transplanted. It's better to transplant early for a majority of reasons. One, she won't remember it. Two, she is healthy now, and healthier babies come out of transplants better, and three, she doesn't need a liver now, so they can wait for the perfect liver for her.

We were told that "they" meaning all the teams we met with would get together and decide what was best for Lynlee and they would call us Monday to give us the answer. If they said transplant, and we agreed she would be listed on Monday. I was shocked on Friday night when they called to tell us that they felt Lynlee didn't need to be listed yet. We would evaluate again in three months. She won't have to go through all of that again, just meet with the transplant team.

Are you confused with this yet? Yep, me too!!

I finally talked to them again today. I wanted to know why we were turned down after they pushed for this, and I wanted to know what has to change in 3 months for them to list her. Here's the answer I got: That they feel she is stable enough now to wait. They don't feel like transplanting her right now is needed. They want to watch her levels over the next 3 months and go from there.

I know I should be jumping up and down with this news. It's great news to be told we can wait. I should be sighing with relief, but I'm not. I'm not sure if it's just because I finally had my mind set with transplanting, I was finally okay with that decision. Now in three months I'll have to go back to that place and find comfort in that decision again? Or I guess we could be told to wait longer. I just feel like we've been on an emotional roller coaster, and I'm ready to get off of it.

We are back to waiting. I should be good at it by now, right?

Monday, May 9, 2011

Bitter Sweet

As most of you know we are in Pittsburgh this week for Lynlee's liver evaluation. We came up this afternoon because our schedule starts at 8am in the morning. When I talked to the lady last week she wasn't sure exactly where we would be staying, but we were hoping it was the Ronald McDonald House. I was so relieved when they called me this morning to let me know they did get us in at RMH! The room is connected to the Childrens Hospital so all we have to do is go down the elevator and we are connected. It's a really a one bedroom apartment. I hated the thought of having to drive anywhere and share a kitchen/bathroom etc like we might if they could only get us in the family housing.

When we pulled into the parking lot today it was pretty much bitter sweet! I was hoping this would be a place we might never see again. Wishful thinking I know! But in a weird way I find comfort here besides the fact it's most convenient for us. When we walked into the door it wasn't that exciting feeling (maybe I'm the only ones that gets excited to check out a new place?) but it was just like we left it. Yes, we are in a different room, and a different floor from when we were here 16 months ago, but it was just like yesterday. The elevator has the same smell it had when we left, and the helicopters are still flying over which always makes me cringe!

There were so many tears shed in this building, so many prayers said, and so much hope was found here. It was really only a place to sleep and shower. I cant really think of any real moments we just relaxed here. We usually left very early of a morning and usually only came back late at night. But this trip is different!! Of course it's mostly because Lynlee is here with us and not in the hospital, butIt's been a trip of laughter and happiness! Lynlee loves it here. She has so many new places to explore and everything is empty so she can open and close the cabinets 1000 times if she wants.

I'm not saying that tears won't be shed or prayers won't be said because I will probably do a little or a lot of both! However, it's nice to have better memories of a place.

Monday, May 2, 2011

Punishment? No, a Blessing!!

I was watching a TV show last night when the last lines of the show was: Every child comes with a message that God is not yet discouraged at us. It made me sit and think.

It's really easy for us to blame God and a lot easier for us to question him. But how often do we thank him when things don't go our way??

Oh probably about a month ago it was brought to my attention that there was a healing preacher coming to West Virginia. They thought we might want to take Lynlee to see if the preacher would heal her. I didn't. My belief is that God made Lynlee this way for a reason, and he will heal her when he is ready.

Not to long after that I was talking to my little brother about this. Tyler knows more about the bible then almost anyone I know! I told him my belief, and when I said that God made Lynlee this way, he was like you are correct! A lot of people would say that God done this to Lynlee, meaning to punish her.

I've never EVER thought that God is punishing Lynlee or us! Don't get me wrong, I've questioned Why, but don't we all? I've thought why Lynlee? Why pick me as the mother of a child with this disorder! But all I have to do is take a second look at Lynlee and know that God has blessed us! He has given me my prefect child.

Next week we go to Pittsburgh for Lynlee's liver evaluation. I received the packet of info and our schedule last week. When I opened the fed ex packet to a folder saying Pediatric Transplantation Services, I got sick. I went numb. Transplanting Lynlee scares me to death. As bad as this disorder is I know all about it, I know what to expect every day. Transplant could be so wonderful for us, but there is that chance that it couldn't.

But going back to God, he will get us through this also. I'm still asking for prayers for Lynlee, and for our family. Prayers that God continues to watch over her and us, and that he leads us down the right path that is best for Lynlee.