Another trip to Pittsburgh :(

This is not a post that I want to write. I would rather be sitting her telling you all these wonderful things that are happening (and I'm sure they still are) but this isn't one of those post.

Its a post to tell you we will be going to Pittsburgh tomorrow evening. Lynlee has a biopsy scheduled bright and early Thursday morning and after she lays still for 3 hours on her back after the procedure we can come home. Hopefully... Yes insert sarcasm to all of that.

We had routine monthly labs yesterday and her liver labs were elevated. A lot.. I mean not the worst I've seen by any means, but usually when they are crazy high she is sick or getting sick. But neither one of those are true yet. Yes, secretly deep down I'm praying her flu hits her overnight and we can just watch this from home (if that makes me a bad mother/person then so be it) but the thought of having her go through another procedure makes me sick. And I know it's JUST a biopsy the whole thing last 30 seconds maybe but it's just something I don't want done to her.

We went to get repeats today, and they were some lower. I was hoping enough to keep us on standby get labs in a week, and all that jazz.. But no we are still heading to Pittsburgh...

Did you know that February 14th is not Only Valentines Day but it's Organ Donation day.. And believe me in the mist of all of this I'm still beyond thankful for this crazy roller coaster of life. I'm still in awe of Lynlee and how amazing she is. I know this is just another bump in the road and I'm praying it's really nothing and we will be home for the weekend.

So I'm asking for your prayers too or whatever you believe in. That this is nothing. That it's not rejection and the procedure and everything with it goes as smooth as possible.

Good News Monday

I'm not going to sugar coat it. I'm going to just get right into. Yesterday Ryan noticed a bump/lump on Lynlee's lower neck more like chest area. And I can't even pretend that I was cool and calm about it. I freaked out.. Really freaked out. I know it can be nothing and I know with an immune suppressed kid that has EBV it can be something very scary and very serious.

I talked our AMAZING pediatrician yesterday (Yes on a Sunday,once again) and she wanted to see Lynlee this morning. We went over after breakfast and she was sure it was nothing. That it wasn't a lymph node and thought we should wait a week and see what it did. Ryan and I wasn't comfortable waiting and thought we'd take our chances with a germ infested hospital to get an X-Ray.

After a few X-Rays we came home. It was nothing.. Thank Goodness! It's just her collar bone. The doctor said it has probably always been like that,  he can see the other side doing it also. He said she's probably just growing and losing her baby fat up there and it's more noticeable. He also said it might be a little more prominent since she has had a broken sternum (due to her heart surgery at 2 weeks old.)It should be the least of our worries.

I'll definitely sleep better tonight though.

But this weekend wasn't all worries and scares. We had lots of family time this weekend. Saturday we got a bunch of snow and yesterday we played outside in it!

Snow time!

Lynlee and Ryan were walking outside yesterday when Ryan asked her what she wanted to do? Plow Snow with him or play in it with me. She looked up at him and said "pow no!" So they plowed and plowed. She didn't even want to come in when we made her.

This is what happens while I make lunch and the two of them have my phone!

I'll probably have more snow pictures after tomorrow. It's pouring it out there again not stopping anytime soon with 4-8 inches on the way..

A little bit of everything

I've obviously let blogging get pushed aside once again. I haven't read the blogs that I follow and it's been a week or two since I blogged..

I can't believe it's February. I have no idea where the month of January went. Well that's not the truth. I feel like it was a long month. We were definitely more sick than healthy the whole month. Between Lynlee's health or the weather she didn't make it to school a whole week (which is 3 days for her) the entire month.

But it seems like we are better now and we've fallen back into our routine around here. Days are busy. Some much more than others. Lynlee has school 3 days a week and speech 2 days. Fridays are the only day she doesn't need to be anywhere. Ryan and I have been working two completely different schedules. Some days I see him of a morning (those are rare) and some days not at all. It's not always ideal but it works. We make it work.

Lynlee seems to be growing up faster than I can type.. Her speech is really coming along. Her speech therapist started something new with her and we can see so much progress. She says more words, and she's finally imitating. She said purple the other day and I cried.. No joke. Big ole ugly cry happening as I'm driving down the road. It was awesome. She is Awesome!

I come out of the bathroom and find her in my bed with all the pillows off watching TV. HA

She is also "over" the booster seat. Refuses to sit on it. Refuses to wear a bib (and she's the messiest kid I've EVER seen) Oh the list could go on with the stuff she does and doesn't want to do now. The tantrums are here and get worse by the day too..

 

 

Lynlee has also found a new love for Wheel of Fortune. She asked to watch it all the time. She stands in front of the TV like Vanna. Touching the letters and when she gets to some of the one she can say (like T, D, P, etc) she gets excited and screams them. She claps for the contestants and spins the wheel :)

 



I'll leave you with a Smile! Until next time!

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.

 

 

 

 

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.

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.

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!