Goodbye- for now.

It's been almost 3 months since I made a post.  In almost 5 years I never went that long.

I think about writing on a daily basis. I wanted to write about so many things like Lynlee's first day of pre-school. Her first art work, the first time she wrote her name, etc... Those days came and went..

Blogging takes time. Some post more time than others when I include pictures, etc.. Right now I don't have the time.. Well I do have time but I've chosen to spend that time wisely. In the past three months I feel like things have changed... So I take every minute I have to be a better mother, wife, and friend... Some times I fail in that task but day by day I try again. I want to be a better person and that is a work in progress every single day.

For the first time in almost 5 years of blogging I want our life to be a little more private. I'm not sure why that's changed. Lynlee's labs have been up and down lately and I didn't want to spread it all over the internet. Maybe I'm just getting older, Lynlee's getting older and I don't want every minute of our day published.

I've went away from the reason I started to blog.. To document every thing for Lynlee so she would be proud of what she accomplished and where she came from.. And also for the families reading this that was scared  when they got diagnosed with Citrullinemia and for the families that needed hope when they were told they needed a transplant..  And after a while I wanted to bring awareness for Organ Donation. It saved my daughter...

All of those things are still near and dear to my heart they always will be. But I've ran out of steam. I actually sat down to do a birthday blog but I couldn't do it.... So this is a goodbye blog.. Maybe forever maybe not.. But definitely  for a while.

See ya on the flip side!

My little fighter

There's never been any doubt that Lynlee has been a fighter. From the moment she was born she has to fight to survive. She has been through more in the past 4 1/2 years than most of us will have to endure in a lifetime.

I'm not going to lie. I forget this. In the day to day routine she is still our "normal" 4 year old girl. I don't think of everything she has been through every single day because when life is good it's good. When we pick her up at day care and the only worry of the day was how many times was she in time out (for fighting) is our biggest problem life should be good right.

I laugh silently while typing this. How ironic is it that she gets in trouble for fighting.  I mean that's all she has ever done. And while we don't condone this at all. We punish her, explain its not right we don't hit, etc etc etc there are times I'm proud of her for fighting.

For instance: in just the past 12 months.. One year.. August 1st 2013 to August 1 2014 this is what my fighter has went through.

Lab work - 21 times (as an outpatient)
2 dental procedure that needed anesthesia
1 hospital stay that lasted 5 nights- that included multiple blood work, a liver biopsy, and a bile duct procedure
4 trips to Pittsburgh for bile duct procedures as an outpatient. Each time she was in day surgery.

So when I look back at just the past year and I've never been so proud to have a fighter..

So Keep Fighting Lynlee... Except be nice about it and don't hit ;)

Surgery postponed and a few pictures

I thought I'd take a few minutes to update everyone on Lynlee's surgery that was supposed to be Wednesday. It has been cancelled again... After my last post she had high labs. We all felt it was from the runny nose, cough, cold etc. So we had repeat labs scheduled for the following week. In the mean time she wasn't getting any better. I took her to Express Care and she got an antibiotic for a sinus infection. This is when the surgery was cancelled. They won't touch her with an infection. We haven't rescheduled. Now if we would have it we are looking for recovery to be in the early weeks of school and I don't want her to miss the first few weeks. We are looking at possibly winter break, spring break or even next summer. We can do it anytime from now but of course the older she gets the harder it is on her and the more she will remember.

In the meantime we've pushed it all to the back burner. We have had repeat labs since, and they are trending back down. We are getting ready for a weekend in Cincinnati for a wedding and preparing for pre-k. I'm sure there will be more post about that. Lynlee had her first home visit so the paper work is complete and we should meet her teacher in the next few weeks. I won't lie I cried like a baby before, during and after her home visit... It will only get worse I'm sure. But I know in the big picture this is the right thing for her, or that's what they all say ;)

I think it's rained here almost everyday so we let Lynlee take advantage of it. She LOVED playing in the rain!!

 Two old photos from last month :) And before anyone complains Ryan was behind the rock wall holding onto her.

I think this picture here sums up her whole personality!

 



Until next time..... Happy Sunday :)

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!

January has flew by.......

I'm having a hard time believing it's already the end of January. It could be because the weather has been terrible and all my days run together but I will not spend the whole blog complaining about the weather. We have done a lot of laying around and being lazy though.

We have had a great month. Lynlee got a new floor in her room..

Last weekend we took Lynlee to the movies to see Frozen ( I highly recommend going to see it if you haven't.) It was her first time going. It took her a few minutes to get comfortable there but after about 20 minutes she was eating popcorn and watching it on Ryan's lap. When the movie was over she literally was sobbing and saying MORE!

This week was her second week at day care she loves it. She seems to be adjusting great (I am too in case you remember the last time I blogged) she is even napping there for hours at a time. She hasn't napped for 2 years so this is huge. I'm so glad that she can just lay down there and nap but we do miss the 8pm bedtime.

Last night Lynlee went bowling for the first time. I think she is a natural ;)

 

It's supposed to be warmer tomorrow. I see lots of playing in the snow in our future. Stay warm! 

A New Day

I'm having a hard time keeping up with everything. Blogging always seems to fall last on my list. Even though we seem to be busy I always feel like I don't have much to write about.  So no news is good news from us.

Today has been a day. A long day and while dinner is in the oven I thought I'd catch up real quick.

Lynlee hasn't been in "school" since October when she got her drain put in. There were a couple things going on we weren't too happy about and when she got the drain we were afraid of it being pulled out so we didn't send her. When it got out I decided to make it work with our families for the time being. Well that's easier said then done. While our family is amazing it was a lot of traveling on both me and Lynlee and at the end of the day she wasn't being around any kids. I feel like she needs to be around them, play with them, learn to play and share and all of that. So we started looking for a sitter/day care at the beginning of the New Year.  She started the Day Care today. I was a nervous mess. I still am. She said she had fun and wants to go back tomorrow but it's momma having the hard time. I could wrap her in a bubble and home school her in a heartbeat if I could....

As if that wasn't enough to set my nerves off we had labs today. However they are great. Even with the runny nose and sneezing from last week. What a relief..

Tomorrow is a new day. 6 hours of day care. I'm sure she will be fine and love it.. Me on the other hand.. Well just pray for me...

Baking, playing, Christmas, more playing

I finally set down to right about the old year, the new year and everything in between when I realized I haven't even blogged about Christmas. So the New Year post will have to wait.

We had an amazing Christmas. Lynlee loved opening presents this year and helping everyone. When she got up on Christmas morning she asked if Ho Ho had come. So she really got it this year. Sending Tootles back to the North Pole was harder than I had imagined. She puckered up and whimpered on Christmas eve when we said our goodbyes. It broke my heart!

Here's a few pictures to show what we've been up too :)

Baking Cookies. Daddy got to help this year!

 Christmas Morning. I'm sure SANTA thought a microphone would be a great idea. However at 7am the next morning with a microphone in my ear screaming MOMMA UP the microphone wasn't so awesome!

 A Jeep like her daddy!

And we've done lots and lots of playing with new toys!

Two years.

I can't even believe it's been two years since Lynlee's transplant. Part of me feels like it's been so much longer but I can remember it just like it was yesterday.

I know I say this a lot but we are blessed. So beyond blessed. I wouldn't wish what we've been through on anyone or especially any child but it makes days like today and holidays so much more special. We never take any day for granted. We are thankful for each milestone or each new word Lynlee says. Each day is something new and exciting for us.

This morning I was sitting in the living room alone. I was thinking about the past two years and how far Lynlee has came. Tears were dripping off my face when she walks in at 7am with her sunglasses on and her head band. These are the moments I love most. That she makes me laugh. Every single day she makes us laugh. She has this personality I can't even begin to describe but she brings joy to everyone around her. Even strangers stop and say hi.

We will be spending the next two days with our families. I honestly can say that I don't think Ryan and I would have made it through the past 4 years without them. They have helped us in more way than I can count. I'm thankful that we know the true meaning of Christmas and we can be around everyone we love.

And I can't end this post without mentioning her donor family. I think of them every day but my heart hurts more today for them. I hope they know that their loved one gave Lynlee a future. A future of hope. I hope that it eases their pain just a little to know that its a gift that money can't buy and I'll never be able to thank them enough.

We wish you a very Merry Christmas! And while your around your family talk about being an organ donor!!

Snowy Day Fun

 

Today we woke up to it pouring down the snow!!! Lynlee started asking to go out at 7:45am. The two of us bundled up around 10:45 and went out and it had already turned to rain/sleet. But we had a blast

 

 

We had to make her come inside for lunch. After that she went plowing with her Dad and then we headed over to Ryan's parents to go sledding.

 

 

 

 What a fun day!!