Wordless Wednesday: New Ride

At the birthday party we went to on Saturday there was a small battery operated 4 wheeler.. And the birthday boy himself got a new battery powered Jeep. For much of the party Lynlee didn't want anything to do with them.. However, by the time it was over she was on it riding around. I'm not sure who enjoyed it more. Her or Ryan... Who am I kidding. We all know it was Ryan...

So you guessed it.. Lynlee had to have one too.. Last night in the house she was more mad than anything that she kept running into the walls.. But outside she was having a blast! Miss Independent does not like for me to help her steer or do anything at all. It's going to be interesting!

Yes, that is the dog she's going at.. He's life is about to get harder!

This picture cracks me up!

Don't even ask what the gloves are for. She wears them all the time! haha

Stoping for a pose

Taking a ride to Aunt Kristies

My favorites from a beautiful weekend!

We took these pictures on Saturday evening. I've been trying to decide which ones to put on here for Wordless Wednesday.. And I can't get rid of any more. Each one of these pictures make me smile. I hope they do you too.. Oh and I'm not that crazy. I know it's not Wednesday but I have something else in mind for that post!

St. Patrick Day pictures.

A little comparison from this year to last..

Sigh....

My baby is getting so big.

Happy St. Paddy Day From the Arbogast's!

Friday Randoms

It's Friday evening... Lynlee is at her grandparents house for few hours. You would think I would be doing something other than sitting Indian Style on my bed blogging. Believe me I have plenty to do and I'm sure it would go so much faster since Lynlee isn't here but I just can't get my mind in it. I can't really wrap my mind around a lot tonight so it will probably end up being a pretty random blog...

Yesterday was a huge day! A monumental day for us!! For the first time since Lynlee was two days old she didn't have to be tube fed to get get nutrition. She ate it by mouth. And let me tell you the child ate! Even at 9pm last night she was still eating. It brought tears to my eyes. I did still use the tube for her water intake (we can't find anything that she just enjoys drinking) and for her meds.

Today has been a different story for us. Even though she has still ate it wasn't to that extent. But I know she isn't going to eat overnight either.

The last time I blogged I said we were going to be do monthly bloodwork.. Well that has changed. Lynlee's EBV level finally came back and it was higher than they want it. So we go in two weeks for labs again. I'm hoping it was just elevated from the fever and things the week before.

There isn't a lot going on here these days. The weather has been awesome. Lynlee and I have been out in the neighbor enjoying the days but we also spend a lot of time inside. Most of her days in her room playing. I still can't get over the fact she plays for hours in there. It's nice that we now have a room big enough for all her toys in there and she can see what all she has etc..

We play doctor a lot. Not to brag but I'm guessing she does play it better than most.

Check out the crazy bed head..

Checking her height and sporting the new jammies Aunt Erica brought over.

I didn't mean for all my blog pictures to be pajamas. We do actually get dressed around here. See the bright pink in the background? I'm loving the new room! And so is she..

Speaking of height and weigh. She has lost around 2 pounds since transplant. They aren't concerned at all. It's actually common for kids with Urea Cycle Disorders because she given so many calories to help with the ammonia etc. In Pitt last week she was in the 50th percentile for weight and 3percent for height. Like the kid stands a chance!

I found the urge to change up the blog a little. I'm not sure if I like the new layout or not? But I'll give it a few days and go from there.

Looks like we have a pretty low key weekend coming up. We have one birthday party and I'm sure house projects. That list doesn't seem to ever go away. We still have to tackle the office and paint a bathroom. Good news is. I should be showering in our new shower tomorrow!

The weekend that continued to get better :)

When I blogged on Saturday I said it was going to be a busy few days. And I didn't lie. It's definitely been busy. When I finally sat down this evening it hit me. I think I've been running on adrenaline for days, actually most of last week. I like have a "to do" list. But I feel like I have to do every single thing on it. I don't like leaving stuff for the next day. Some days I set myself up for exhaustion. That's what I've done for the past week with all the painting, moving, etc. My goal for this week is to get a few more things done, but mostly enjoy the warm weather coming this way with Lynlee.

On Saturday Ryan's family came in. It was so nice to visit everyone. Lynlee has a cousin named Skylar that is 5 years old. They played together all day long! I was so proud of her. She's never been around a lot of kids and hasnt' always been the nicest too them but I have to say she did very well on Saturday. She definitely looked up to Skylar and wanted to do everything she did which included eating :)

As I was going through the pictures I was cracking up. I had forgot my camera so Janna let me have her pictures. I cropped a few of Lynlee because she was obviously the only one that knew the camera was out. Go Figure!

Yesterday was my sister's baby shower. Have I told you guys I'm getting a nephew in just a few weeks? Well April 24th to be exact a C-Section is scheduled unless he decides to come early!

After the shower we headed out to Pittsburgh. Of course Lynlee was being a diva in the back seat.. Surprise, surprise!!

We stopped at TGI Fridays and had dinner.. It was the first time we've actually ordered Lynlee something to eat and drink. I seriously almost cried twice at dinner just watching her eat. She did so good, and was drinking like crazy. She even asked for 3 more sips before she would leave the table to get in the car! HA!

                                I actually thought this was going to be the highlight of our trip!

We got to the hotel around 9pm. 9pm is usually bed time for her but I guess since she had a long car ride and the excitement of a new place it was a little past 11 when she finally went to sleep. Followed by an early morning for Miss Thing,  it made for a long day..

Blood work was actually a breeze today. We told Lynlee if she did well we would stop and do some shopping. They got her on the first stick. There are the moments I've came to be thankful for. That my baby only has to be stuck once or twice instead of 3 or 4 times. But none of those great things  even compared to the new we got from the doctors.. They said our next appointment would be on our one year Anniversary in December and we could go to monthly bloodwork instead of weekly. I really think I was more happy about the later of the two. I honestly don't mind the trips to Pittsburgh. We've only done them since Lynlee was born, but I'm not complaining. I don't mind just going up to go to the zoo and to come home! But the monthly labs mean sooo much to me. I know Lynlee's veins are getting bad. They've been used a lot lately so we will welcome the much needed break.

We stopped by the outlets and I guess Lynlee was very good. She came home with more than a couple shirts!

Well this momma is tired. We will continue to take it day by day. Pray that Lynlee doesn't have any plans to visit the hospital before December but if she does we will manage. And we'll definitely be Thanking God for our many blessings again tonight.

And for those of you that don't have Facebook.. I thought you might enjoy a few extra pictures from the weekend..

                                                      Cheesing with Aunt Janna & Uncle Kevin

Marking Blogging off my to do list!

I've had blogging on my "To Do" List for days.. And for some reason I keep putting it off until the next day. So I thought if I blogged bright and early this morning then I finally mark it off. Besides, we are getting ready to begin a crazy weekend so I know my blogging time is limited but more on that in a moment.

First things first.. Why most of you read..... We went for Lynlee's bloodwork on Monday. All labs looked great. Everything was back in normal range. We head to Pittsburgh tomorrow evening for an early clinic visit on Monday morning. I'm kinda hoping we can go to every two weeks with labs, but I know that's probably wishful thinking..

Things around this house are crazy.. But a good crazy, I guess.. We are making progress. Since last Sunday we've moved into our new bedroom and closet.. Hopefully the bathroom will be working by the end of this coming week.. We've also got our old bedroom painted and Lynlee moved it. It's all starting to come together. I can say we've worked our butts off. For the past few nights we've worked until bedtime and woke up and done it all over again. And Painting with a two year old... Wow.. I'm surprised I got int finished in two days..  (Pictures of the room to come when it's finished with pictures hanging)

Dad and his little helper!

Our vanity came in this huge box so Ryan made a door and some windows for Lynlee. I can't tell you how many HOURS of entertainment this box has been for her. We move it from room to room (into the room we are working in) and she loves it.. I'll actually be sad to see it go..

I feel like I have so much to say and to update but nothing important comes to mind. We are excited for a weekend with family and tomorrow is my sisters baby shower then we leave for Pittsburgh.. So I guess I'd better go get some toys put away, a shower, and get ready for the day...

I'll try to update soon!!

Have a great weekend!

Live and Learn

On Monday we took Lynlee for labs. After 3 sticks they finally got the blood they needed. We got a call on Tuesday from Pittsburgh. Lynlee's liver levels were slightly elevated. Not crazy high but elevated enough they were concerned. They wanted us to come to clinic on Thursday instead of this coming Monday for labs and an ultra sound just to check things out. We are only 9 1/2 post transplant and there is 90% of rejection 8-12 weeks post. It's normal.

Yesterday morning everything was fine. Lynlee wouldn't eat breakfast and seemed a little but her temp was normal. We check it every morning and night. She had her physical therapy evaluation (did great) and played. Around lunch time she screamed when she saw food and Ryan took her temp while I was in the shower. It was 99.0 By the time we were starting to pack to go to Pittsburgh to spend the night since we had a 9am clinic appt her temp was up to 101. I called Pittsburgh and they sent us to our pediatrician. It was 103 by then. We were hoping it was an ear infection or something common but her check up was clear. Our pediatrician called Pittsburgh and they wanted her to go to our local ER and get blood work done, get IV fluids running and get transported. Its no secret I'm not a fan of going there. They scare me with Lynlee. They don't know our situation and it's never been a great experience there. Our pediatrician knows this and tried getting Pittsburgh to let us drive her, give her the Tylenol and pump her with fluids the whole way. Transplant didn't agree so we went to the ER.

A very long and disturbing story short... We ended up heading to Pittsburgh over 3 hours later with no IV access after several attempts, hemalized blood with incorrect numbers, and a very tired little girl that went through so much. How frustrating!

I'm not going to lie. Ryan and I were a mess. We were scared it was rejection. We thought the days of getting their immediately were over. We thought the many attempts of IV's in hospital other than Pitt were over.

And I'm so grateful for our support system and family. The first thing I did was call my sister-in-law Heather. For those of you that don't know she is a paramedic. She came in on her day off along with a good friend of hers to take Lynlee to Pittsburgh in an ambulance. I can't tell you the relief it was to have someone that Lynlee knows taking care of her. They literally played the whole way to Pittsburgh.. (I on the hand was trying my best not to vomit in the back of ambulance!)

She looked so big riding in a seat belt, watching Barney, and playing doctor.

After we got to Pittsburgh things were much smoother. We got an ultrasound done, got admitted, go an IV on the second try with amazing blood return, and was in bed by 1:30am. Okay the 1:30am was all sarcasm. The labs were better, ultrasound great, and it looks like Lynlee just had something viral. Her fever broke around 3am and she's been fever free since. We got discharged around 2:30 this afternoon and I'm thankful to be blogging from home.

This was last night in the ER...

And this morning she was back to normal.


I knew our first fever and fear of rejection would be scary, but I'm glad its under our belt. I've learned a lot over the past few 36 hours....

• Unless it's absolutely necessary and I mean ABSOLUTELY NECESSARY we will be taking Lynlee by car to Pittsburgh with the next fever. (I say next time because I know somewhere down the road there will be, I'm just being real)
• Ryan is stronger that he thinks. For the first time ever he took Lynlee to the ER while I came home and packed our bags and meds. It was the first time Lynlee has ever had an IV and I wasn't there to hold her. A huge day for both of us.
• There still are good people in this world.
• God puts the people you need in your life...
• I wouldn't trade our pediatrician or her nurses for the world.
• Never get in the back of ambulance if you get car sick.. trust me!
• My daughter is more amazing every day. She's one of the only kids I know that can have a fever or 101 been stuck more than 8 times in the past 3 days and still dancing to Barney at 11:45pm at night in the ER with a huge smile on her face. God has big plans for her. And I can only thank him for letting me be part of the ride.

We are hoping for a very low keyed weekend followed by hopefully easy blood work on Monday.

Thank each of you for you thoughts and prayers. God heard what you were saying and blessed us once again.