It's Monday. It definitely feels like a Monday around here. I'm mentally and physically tired.
On Saturday Lynlee and I got up and ready and headed to Harman with Heather. The craft show/bazaar was fun and the potato bar was yummo!! However the highlight of the trip had to be Lynlee seeing the cows. She talked about them all evening.. Tried to moo like them!! A trip back is definitely necessary!
Yesterday was a ummm different day I guess I can say. We decided to get out of the house and take a trip to Clarksburg. We had some gift cards from Christmas to use and needed a day trip somewhere. However, Lynlee was in rare form. She started crying before we even got there and the kid loves to travel. She said she was hungry so we went to eat. The whole thing was a fight. Her food was hot, she wouldn't let me blow on it and help her, she wanted to do it by herself... do you see where I'm going with this. I've never been so close to walking out of a restaurant in my life. She just wants what she wants when she wants it.. I hear this is typical 2 year old stuff.. And the whole ordering food is new to us and she just wants to eat.. Sigh...
Long story short we passed on the mall hit up a few stores and came home.. She is was in very rare form. She was a tired toddler and we were two aggravated parents.
After we got home last night I checked my email and had one from a lady that had found me on the UCD group on facebook. Asking about Lynlee's story and transplant journey.. As I sat there and told her about it all those memories and emotions came back.. I try not to go back to those first day. They are so hard. The days of fear and the unknown were the worst days of my life. I know it's good to go back every now and then so I don't forget (if that's possible). And I know that unfortunately this won't be the last time I told Lynlee's story to someone that has a child with this disorder. It's just our beginning.
As I laid in my bed last night crying because of the emotion of the day and the fact that I'm so thankful she's still here with me, I felt like a terrible parent. I had been very impatient with her yesterday. She was just tired and I wasn't great. I wish I could take yesterday back and be a better mom to her. I was texting Heather (have I told you how great she is!) when she told me.. that one I'm not a terrible parent she needs discipline and..... that it never fails something brings us back to where we need to be.. and that it was okay to go in there and sleep with Lynlee and hold her tight.
And she's right. Every single word of it.. I swear God knew I needed Heather in my life long before I did.. Isn't it crazy how people end up in your life and you don't know what you have ever done without them...
I didn't get much sleep last night. After all of that Lynlee needed blood work this am so I kept pushing water in her all night (the advantage of the G-Tube) so her veins would be good and hydrated. We left for blood work around 7:30-7:45 and as we were driving I told her we were going to the hospital for blood work. She stuck her lip out quivering and huge tears dropped off her cheeks. I'm not going to lie. It tore me up. I pulled into the parking lot of the hospital crying. Hating life, hating the hand we were dealt and asking God why my sweet baby girl is going through this. They got her blood with two sticks. And as long everything is okay we will go again in a month. We've tried a few different times telling Lynlee were she is going and then not telling her. She actually does much better when I tell her even if it does break my heart.
On another note most of her labs are back and everything is perfect.. The EBV (the main reason we had labs today) won't be back until Wednesday and then her prograf will be back Thursday.
We have a pretty low key week a head of us which is a good thing. Lynlee took a 3 hour nap today and is still running on full steam so bed time isn't going to come as early as I would like tonight.
I feel like even though I've blogged this week I haven't really said a whole lot.. And the truth is we really don't have a whole lot to say. Which is a good thing! We were laughing last night that the biggest thing that happened yesterday was the fact that Tim Tebow got traded to the the New York Jets. Crazy how our life went from ammonia checks, to a liver transplant, to now having noting else happening that we've resorted to caring about Tim Tebow. HAHA.. But I wouldn't trade it for the world. ..
All jokes aside things really are that boring around here. Lynlee has some nasty allergies that some Claritin is already clearing up. No blood work until next week. Our new addition is finished.. Lynlee's room will be 100% done tonight when her pictures come today. We are still amazed in the 70 and 80 degree weather we are having in March. We've broke out the shorts and been enjoying every single minute of it.
Lynlee's eating is getting better. The past few days have been a littler here and there from the sneezing, coughing, mucus, well you get it... But last night she ate so much chicken that I told Ryan this time 3 months ago we would be life flighting her to Pittsburgh for. It never gets old watching her eat!
And that's about it... So here's so more pictures until next time!
How am I supposed to not be happy at this face??
Her first DQ ice cream cone. A huge success followed by a bath!
I think she's finally got the concept of Easy.. Those cats have lived a rough life!
And last.. Our Pinterest project for the weekend. Whoever thought of this was pure genius. Now Lynlee can stand on the stool and reach the water. Yes it's the little things that really make a difference.
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
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!
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!
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..