Rare Disease Day

Today is Rare Disease Day. As most of you know Lynlee was born with a rare Disease (Citrullinemia) which lead to a liver transplant when it became unmanageable.

A Rare Disease has made a world go upside down.

A Rare Disease has made a appreciate life and all the small things in it.

A Rare Disease made us love a little harder.

A Rare Disease made us pray a little longer.

A Rare Disease brought so many people together.

So today I hope you wear your Jeans for the Genes.

And most of all we hope you don't take any day for granted. That you smile today. That you laugh and love hard today. That you appreciate the small things because we never know what tomorrow might hold.

Pittsburgh, sickness, etc

Last Tuesday Lynlee had her ultrasound. We drove 6 hours total for a 20minute procedure. It was a long day with a little shopping and some awesome food :) The results showed everything was clear which stumped the doctors. They were sure it would show something. They wanted to get labs today and do an MRI of her bile ducts early next week just to make sure there isn't something hiding in there.

(Lynlee waiting on Aunt Heather to try on dresses on our Pittsburgh trip)

Last week Ryan and I both came down with a terrible cold. No joke, I don't remember the last time I felt that bad. Ryan called off from work one night and I was in bed every night by 10. We are still pretty stopped up but feeling much better...

(When mommas sick on the couch Lynlee does hair)

So of course Lynlee comes down with it. Her nose started running over the weekend and she hasn't been sleeping well.. She had labs today and they were about the same. Still high. They can't sedate her with a cold so they decided to get labs in two more weeks and we will go from there. We are going to reschedule the procedure but that doesn't mean she will have to have it. Basically we are praying for perfect numbers in two weeks..

Speaking of praying,Ryan and I went to church for the first time in a long time yesterday. Our Godson got baptized and we were honored to be apart of it. I feel like with Lynlee's medical stuff and some personal stuff going on we have a lot on our plate. The sermon the preacher gave really spoke to us. And I left there feeling so much better. I'm not one to preach or push religion,but it's awesome how God knew we needed that.

I think other than all of that things are the same. No real update... I've been working some, finally have some of my own clients. I can't tell you how thankful I am for a job that it doesn't matter that I need days off to take of Lynlee.. And other than the cold Lynlee is awesome. She's still going to school a few days a week and having her speech therapy. She's making some progress, I'm so proud of her.

(Love these two!)

 



Update & Results

It's been a rough week. I can't remember one that has been this bad. Both physically,mentally,and emotionally draining. I'm ready for the weekend. To have time with my husband, with our little family and hopefully rest up.

The trip to Pittsburgh was exhausting. Ryan had to work so his mom went with Lynlee and me. Lynlee LOVES hotels. She gets so excited in them. She never seems to sleep and never wants to leave. We made a mall trip just to pass the time.

Did I mention she loves the luggage carts too..

The night we got about 2 hours of sleep total. She was not resting, complaining of multiple things hurting etc.

(Two thumbs up for dad!)

 

(playing Dr. with Vava)

The procedure it's self went fine. Lynlee fell asleep before they took her back thanks to some meds they gave her and she slept for about 2 of the 4 hours of recovery. She had to be on her back for 4 hours afterwards then they had to draw labs make sure her blood level was okay and then we could go. We arrived at the hospital at 7:30am and left at 4:30. Long day..

(Bed rest watching Barney)

They called today with the results. No Rejection!!! But they did see some change in her bile ducts and said they would be calling Monday to schedule an ultrasound. We don't really know what that means, what they will have to do or anything at all until they take a look at it..

This afternoon Lynlee spiked a fever.. And then this evening she started vomiting. I'm hoping she gets so some rest tonight to fight it.

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!