Our Weekend in Pictures.....Happy 4th of July

I'm sure that most of you know that Lynlee's surgery for her abdominal muscles that I posted about last month was cancelled. She has had bad allergies/ cold so Pittsburgh rescheduled for the 30th of this month.  So we had no plans at all for the 4th as of Wednesday. Then a last minute trip to Canaan Valley with Ryan's parents was scheduled.

I'm not sure words can express how great of a time we had this weekend. One of the best vacations we've ever had..

Here are some of my favorite pictures that I wanted to share :)

First of all our view was AMAZING!!!

Lynlee loved mini golf

 



 Yesterday morning we took a chair lift ride to the top of the Mtn. Lynlee cried for about 30 seconds and then loved it. The view at the top was awesome.

There was a kite festival at the resort! We spent some of our afternoon at the playground and flying kites.

I have to say I think the best part of the trip was the pool. Lynlee finally LOVED the water and swimming!! I am so proud of her.

A wagon ride to roast marshmallows........

And on our way home today we stopped by Blackwater Falls.....

 

I wish I would have got a picture of the fireworks last night. It was a spectacular show and Lynlee was so excited about them. Only 4 years and she finally enjoyed them! She is growing up so fast and changing every day.  I am definitely a proud mom tonight.





Pittsburgh Update

Lynlee had her annual checkup with transplant last Monday and we also saw an allergist while we were there. It was a good trip. Lynlee was excited to spend the night in a hotel and was mad when we came home. So it went exactly how we thought it would :)

They said that her liver was happy. Things were really as good as it gets. Her liver numbers are beautiful, we are on a low dose of meds, and there is noting to wean off. So this is it and I'll take it.
They also said it was time to schedule her abdominal muscle closure surgery. When she got the transplant they were able to close her skin of course but not her muscles. They like to do it within the first 1-2 years post transplant but with last summers complications we got our pushed back. Its not a huge complicated surgery but it's very painful and still a surgery none the less. I am dreading it. The told us we could be in the hospital for one week and at Pittsburgh another week for a check up.  We will be going up in a couple weeks to get it done and over with so she has a fresh start with school this year. I keep telling myself this is the last and final chapter of it, so lets just do it...

We also saw the allergist while we were there. They tested Lynlee for peanuts and she came back positive. We are hoping in a few years we can introduce it back to her. They said it was very odd she doesn't have a reaction every single time so there is hope it may get better... We will see..

I think that pretty much wraps it up.

I have so many pictures on my phone I want to share, but that will wait for another day.....

Catching up picture style...

I swear I've thought about blogging at least 50 times over the past month but I just can't force myself to do it. I feel like I'm in front of the computer enough doing paper work and when I'm not my office it's the last place I want to be. Mainly because I get in here and see other stuff that needs to be done and blogging always gets pushed back....

Anyways, I thought I would do a post with some pictures.... Things are good with us. Really good. Lynlee has bee weaned off her last med from last falls issues. Labs are amazing. We have a transplant clinic in June in Pittsburgh and we are going to see an allergist while we are there.

She also had dental surgery on May 16th. She was a trooper like always. They were able to fix all her bottom teeth but her 3 top ones had to be pulled because they were in terrible shape. One already had an infection in it... She didn't complain once, I don't know how that happens??? So now all four of her top teeth are gone. She looks adorable. It is what it is, moving on...

We've done a little fishing:

Helped Aunt Kara "Baby sit"

 

Went for a few Jeep Rides .......

 

And of course we had time to stop and pose for the camera...

Until next time.......

Update. Bullet Style

I haven't really updated in a while. Things are boring with us but here ya go:

• Lynlee's labs have been rock steady for months. Even with the stomach virus and a cold with a fever last month they were right now.
• She is on one last med wean and then we will be back to her normal 3 meds that will she will take for most of her lifetime.
• Everything she says no ends with my mom (or whoever she is talking too) For example today when we walked into speech I asked her if she wanted me to put her sunglasses in my bag. She replied "No on my head my mom." or my favorite it when I tell her something she always says "Alright my mom"
• Last Wednesday I registered Lynlee for her dental surgery in May. I'm dreading this so bad. I know it's just a cleaning and fixing some teeth but it still stinks.
• I turned 30 a few weeks ago. My husband threw me a huge surprise party. I really am a lucky girl.
• We were out of town for Easter this past weekend. The first holiday ever we've woke up not at our house. It's okay though. The Easter Bunny brought Lynlee's present a day early. A DVD player for the car. We watched Frozen twice but she didn't make a sound.
• Speaking of the weekend, Lynlee is getting an allergy to peanut butter. This is the 3rd time it's happened (not consistently with the peanut butter) but some times seems to be better than others. The last few times it happened she was eating it with something else really spicy and we kinda blamed it on the other thing. Yesterday when it happened she was eating nothing but peanut butter :/ She even had some on Thursday last week and she was not affected but it. So odd. But we have an apt set up to go from there.

I'm pretty sure I got it all. Told you we were boring people :)

Donor= Hero

Today is National Organ Donation Day. I've known for weeks I would make a blog post about it since it is something my world revolves around now. But Tuesday something changed the direction I'm taking the blog in.

On Tuesday I got a message from Lynlee's donors mom. I'm honestly not sure I ever thought I would hear from them and there is no way I would have ever thought I felt like I did. When I read the message and it said I'm your donors mom I know I read that over and over before I could continue. Like it wasn't sinking in that it was real.

I was so emotional, I cried for hours reading about this man. I mourned for his mother and for his family.  His mother, god bless her, posted everything about the accident that took his life and about his final days. She was posting up until the time he went into the OR, up until the time that he was becoming part of our family. She even mentioned a 2 year old getting a part of his liver.

I didn't know you could feel so connected to someone you didn't know. And up until this week I've always known Lynlee had someone else's liver (of course) inside her but it really hit me. That this man has a piece of him living inside her.  We are connected to him and his family.

Over the past few days I've talked to his mom multiple times. She's told me so much about him. He loved music, travelling, but most of all he loved his family. She said he had a heart of gold would have given Lynlee his liver anyways. She said he took amazing care of himself (flossed all day long) and was never in a bad mood. He never told a lie. He was a wonderful man.

So today I want to Thank this man. Victor Livingston  Harris for giving me my daughter. For giving us hope and faith for a future.  We will take such good care of your liver and hopefully your legacy. I promise we won't take any day for granted.

Thank you.

From bad mood to good

Today I want to talk about Lynlee's speech. It's so frustrating for all of us to have a child with a huge speech delay. Now don't get me wrong. We are so thankful for Lynlee, how far she has came, and all the progress she has made etc, etc, etc.... I haven't forgotten about that but some days it's hard to remember that.

 I can't ask her a simple question like how was your day. I have to say things like was your day good or bad. The open ended questions like what did you do today are usually too much for her. She can tell me by acting out if she colored, she can say nap but she usually can't tell me what she had for lunch or anything like that. It stinks.. There are days when I'm frustrated with it. I just want her to talk so badly and it be so easy for her. But it's not. It's very hard for her. She even gets frustrated occasionally but in general does very well getting her needs and wants met by the little words she does have.

So we ordered a special CD that she has been using in Speech. If we are in the car she will occasionally sing/hum along but I can never understand her. So today when I put in the CD and she was singing the words with it I was crying like a baby. I knew she did some of it in speech but just to hear driving down the road was all I needed to today. My bad mood instantly lifted to good and all is okay in our world..

Keep Singing Lynlee!

Getting caught up

I'm not sure where February went but I went the whole month without a blog post. I don't think this has happened in the 4 years I've been blogging. I'm not trying to stop it all together but some days just feels like I'm done or I'm over it... And then something happens. Something that I don't want Lynlee to forget and I think I need to blog that.. And I get busy or tired and I miss it..

But todays post are all good things.

First and foremost Lynlee is off of steroids for the first time in 7 months! This is huge! I wasn't sure when this would happen. Her rejection last June was hard on her. Going from nothing to up to 40mg of prednisone and to finally wean off has been a huge adjustment. We went for labs early February when they decided to start a wean again. We went on hold with everything after the drain was in and then out and such... Labs on the 10th were good. We weaned the steroid to every other day with repeat labs in two weeks. We went back for labs on the 24th and they were even better. So the steroid was stopped. I didn't think the wean would effect her any but it did. Every time we did a wean she was irritable and mean some worse than others. We have labs again in two more weeks and will start weaning other meds (that were added when the drain was in) if everything looks good.

Second big thing that happened was Lynlee was signed up for Pre-K in the fall. This happened on Friday. It was a big deal. Not so much for anyone but me. I sat in the car crying for 15 minutes before I could even walk into the school. I'm sure they think I'm nuts. And then they ask me if she would be riding the bus. I literally laughed at them. The lady was so nice and understanding and even said I could follow the bus by car if I wanted. I wasn't joking when I said I would probably be doing that daily.. 

Other than that things are pretty much the same around here. Lynlee is going to day care 3-4 days a week right now while I'm working. She had a Valentines Day party where they decorated cookies and had a blast. Here is the picture I've been meaning to share with you...

She also has speech therapy twice a week. So there is rarely a day when we having nothing to do or no where to go. Sundays are still the only "family" days we seem to have with everyone's crazy schedules .We always take advantage of that!

Until next time... I promise it wont be a month from now!