Thursday, January 17, 2013

Boring & Sick



I feel like I should do some sort of introduction. It's been so long since I blogged you might have forgotten us :) Just kidding.. but it feels like it's been a while. I think that means its normal around here. If our life is so boring that I can't even think of something to say that is a good good thing and it's taken us 3 years to get to this point..

And that's just it.. We have been boring... Sick... but boring.. We've had the headcold/sinus stuff for what feels like ever. And then I had a bladder infection this weekend which lead me into Express Care. I can't be sure but I think I picked up the wonderful stomach virus while I was there. So I spent Sunday night in the bathroom... I'll spare you the details but I haven't had a stomach bug since I was pregnant and I haven't missed it...

And of course if I had the stomach virus someone else in our house would get it too. I've been home the past two days with Lynlee.  That poor kid was so not herself. She literally laid on our couch for almost two days watching TV. And for all you of that really know Lynlee knows she doesn't just lay on a couch.. EVER...

Still smiling
 
But today she seems to be back to herself. Getting in trouble ever five minutes. I would like to say we are all 100% now but I've been so nauseous all day. I'm really hoping it's nothing. I wouldn't get it again? Right!?
 
I'll definitely take the boring days over the sick and/or eventful days...
 
Until next time.
 
 
 
 

Monday, January 7, 2013

All is right in our world

Should I really say that all is right in our world for the moment?  Because it is. We've had an amazing two days.



Yesterday we got up and headed to see Elmo.I'm not sure what I expected but it was SO good! And Lynlee loved it sort of.. No, she did love it but hated to see it end. When Elmo left the stage for a different scene (is that what it's called in a performance?) she would cry. During intermission she cried and you didn't even want to see the scene she made when it was over. I guess she thought we'd stay there forever? or obviously longer than an hour and a half. She wasn't the only one upset. The little boy behind us was refusing to get out of his seat until Elmo came back out. HAHA.

 


And then we headed to Pittsburgh. Lynlee got over the Elmo ordeal when she found out we were staying in a hotel. That might be her favorite thing ever. She loves a hotel. She can entertain herself for hours with no toys needed. She goes on very little sleep and wakes up in the best mood.. I can't say the same for me but it definitely works for her.

This morning we had to be at the Children's Hospital bright and early.




Our day started with labs followed by transplant. We had a urology appt to make sure everything was okay with all her UTI's shes had and we ended up with Genetics. And to make things simple everything was perfect. Her liver labs from today was great. We are weaning her off her iron and the aspirin should stop sometime next month. There was nothing to worry about urology wise. And Genetics was thrilled to see her. They had done an ammonia level on her and it came back less than 9. I didn't expect it to be anything but the number made me feel so relieved.


We will be back going back in the spring to get Lynlee's final muscle closure surgery done. When she got her new liver they wasn't able to close up her stomach muscles. It's obvious if you're around her. She can't just sit up from laying down or even in a chair. She struggles in all things core related. And down the road it could cause pain and not to mention the cosmetic issues with it. She would Never have a flat stomach and it could even become lop sided and such. We are free to arrange the surgery whenever  but Lynlee can't be sick for it. So they suggested spring. Hopefully we will be over this darned cold by then!.

If it wasn't for that we would be clear for another year..

So tonight I'm definitely counting my blessing and thanking God for the many prayers he answered.

Saturday, January 5, 2013

Packed and Ready to go.

When I sit down to blog I realize it's been longer than I expected or wanted to. I always feel like I need to blog more than I do. The week wasn't to bad. We are all stick sick. Head cold, runny nose, coughing, all that jazz. We've had it forever.. Weeks really. It seems like it's all gone and comes back again. I'm sick of being sick already..

But life goes on even when we are sick. Lynlee only made it to school one day this week. She was off one for New Years, and then we took her to the doctor on Thursday.

But moving on the exciting news. We are all packed and ready to leave town tomorrow. We have tickets to see Elmo in Morgantown tomorrow and then we head to Pittsburgh for our yearly check up Monday. It's the first time we've been in Pittsburgh since her allergy appt in August. That's possibly the longest we've ever been away from there and it's been nice!

I'm not dreading the trip like I usually do. I'm excited about Elmo and seeing some of our favorite people at Pittsburgh. We haven't seen our genetics team since transplant. We are looking forward to seeing them for sure.

I'll update you when we get back. Here's a few of my favorite photos from the past few days.





Tuesday, January 1, 2013

New Years




Happy New Year everyone!!

Last night we decided to stay home and bring the New Year in with just the three of us. We had been invited to a few places but Lynlee had been pretty tired most of the day and had a very stopped up nose. I knew she would never stay away from home and be comfortable. She needed to be home in her bed and get a good nights sleep so she can get better.. So that is what we did. She went to bed around 8:30 and we didn't see her again until 8:30 this morning. She is still a little stuffy but seems to be feeling much better.

I'm thankful for last year! The last year, the last 6 months have been the best we've ever had as a family. There was definitely some bumps in the road with Lynlee, our lives, etc but the overall was amazing. I can't get over how far Lynlee has came in one year. She amazes me. So many changes has been made this year.. This time last year I would never have believed Ryan would have a new job, that I would be working or Lynlee would be going to "school." I would have never thought she would be eating and drinking, and taking her medicine by mouth. These a just a few things I'm so beyond grateful for.

I'm excited about this year.. I'm excited for another year with our family. I can't wait to see what strides she will make and how much farther she will come. I'm looking forward to watching her grow and learn. I want all of us to grow. I want to be a better friend, a better wife, a better mom, and an overall better person.

I'm also looking forward to a few other things this year.. We will be getting a new niece or nephew in August... I can't wait and I'm so excited for my brother and sister in law.... And we found out last there would be a wedding this year. My BFF got engaged.... I can't stop smiling over those two things and I know the rest of the year will bring other happiness as well..

I wish you the  Happiest of New Years and for 2013 to be the best yet!