Monday, April 30, 2012

April: Bullet style

I've known all day that I wanted to blog. Some days I blog mearly because I feel like I have to but some days I just want to. It's the last day of April and I thought I wanted to do a little recap of the month.

I looked back at my April blogs and this is what I've learned..

  • We've went from tube feeding some to tube feeding NONE! We only use the tube for hydrating and meds not eating!
  • Yogurt is still Lynlee's favorite food and she has ate at least 1 container a day for 30 days. Some days up to 3!
  • We've seen lots of cows this month!
  • We've done lots of painting and the house has came such a long way. It's almost where I want it!
  • We've celebrated 3 major birthdays and a baby.
  • Our monthly blood work has turned into 4 times in the month of April and only one of those was a finger stick.
  • And last but not least this is the last day of  Organ Donation Awareness Month. I had one person tell me that they became an organ donor because of Lynlee (THANKS MARY) I would love to know that more than one person was affected by this. If you don't want to tell the whole world send me a message or an email.  I'd love to know :)    if you not, you can register by clicking here and clicking register now.  

I'm hoping the April Showers bring May flowers .... That we have less blood draws this month... That we have even greater accomplishments. That we never take one day for granted. That we Thank the Good Lord for his many blessings... And that I don't bore you too much :)

Sunday, April 29, 2012

Come back soon weekend!

 What a great weekend we've had. I'm actually very sad to know it's almost over. Yesterday was a very busy day. We had the bridal shower and then went to my families house followed by a cake walk. We ended up very "lucky" to say the least. We won a guessing game at the shower and came home with dish towels, pot holders, and hand soap. Then at the cake walk between the 3 of us we won a total of 6 items.  We gave most of them away. I have half of a loaf of bread of half of a cake in my kitchen. That is way to much sugar for this household.

Today was an amazing day. Lots and lots of family time. I feel with all the household projects we have going on we barely take time to just enjoy each other. With 70 degree temps it was a prefect day.

I know you see a this pose a lot. But it's my favorite! I love these two more than life itself!

(under the bleachers)

(Like we ever wondered where all the attitude came from?!)

Looking back over the weekend. I think we spent it with the people that really matter most in our life. I saw everyone from my Best Friend, to my sisters, to our family... What else do you really need?

Tomorrow is back to the real world though. We have full labs again. So much for my wishful thinking of a finger stick. Lynlee's prograf (rejection) meds came back high so we are tweaking them. Not a big deal but with her EBV still being elevated we need it lower.

Wishing everyone a happy week!!!

Saturday, April 28, 2012

Busy Bees

Lynlee and I have been busy bees the past couple days. Not really hard labor or anything but we manage to stay busy and have lots of fun while doing it. Yesterday we headed to Aunt Erica's house to make some suckers for Tosh's bridal shower on Saturday. Lynlee feel in love with Tosh's head band but loved getting her way more. She seriously spent all 3 hours bossing them around and dancing sitting on the counter eating chocoloate, dancing, and more dancing.

Then today we made goodies for the cakewalk tomorrow night. Tomorrow will be a fun day. Bridal Shower and cake walk! Yes I'm excited. HAHA. I seriously think Lynlee will have a blast at the cake walk. They are defintely an old school favorite of mine.

Lynlee helped with all the sprinkles today. At the end I finally told her she could eat them and it was all over with! HA!

The end result... Plus doing laundry, cleaning the floors, and running errands. I'll take that as a pretty good day!

Have a great weekend!!

Wednesday, April 25, 2012

Painting, labs, Baby and Birthdays..

Yep that title about sums up my life since my last blog post.

First things first. Lynlee's labs came back good. Liver labs were almost normal again which means no rejection just viral. Her potassium was low so we got rid of one med and cut another in half and go for more labs next week. (I'm thinking a finger stick will work for that one.)

I am seriously out of control with the painting. The living room and hallway bathroom is now painted and added to my done list. I'm actually very happy with how everything is looking. New paint just makes everything look better.

Today is Ryan's birthday. Birthdays are always very special here. Lynlee and I made a cake for him. She is such a helper these days...

(not the prettiest, but made with more love than you can ever imagine!)

We went out to dinner. I'm not even joking when I say I'm not sure who ate the most. Lynlee is certainly holding her own at the dinner table these days. And loving every minute of it.

And last but not least my nephew Brody entered the world yesterday and literally stole a piece of my heart. He is the most precious, adorable, sweet little boy I've ever had the pleasure of meeting in my life. At 7lbs 10oz and 19inches long perfect doesn't begin to describe him. Him and his wonderful momma are doing fine and should be home tomorrow.. 

Welcome to the this world Brody! I know it's a better place just because you're in it!

Friday, April 20, 2012

It's Friday! It's nice and warm out, the sun is shining, but I'm tired. I feel like I could sleep forever. Thursday Lynlee woke up with a fever of 102.6 so we headed to the pediatrician first thing. Everything looked great there so we went for labs. Her liver labs were elevated. Very elevated. We go back for a recheck on Monday. We are hoping the fever caused the high labs and they are trending back down by then..

Her fever broke last night before bed and hasn't returned. She is back to herself today and seems to be feeling fine. I wish I had her energy after two nights of no sleeping. She actually slept last night while I was up checking her temp, etc..

Both pictures taken today.

Yesterday we also said goodbye to Lynlee's IV pole. I called them to come get it. We haven't used it since December. They asked me if I wanted them to pick up her feeding pump too. I decided to keep it. I know we haven't used it since February but I just can't let it go yet. Maybe when the gtube comes out. Yes I said when. I am very hopeful that will happen... one day!

Have a great weekend.. We are planning on doing more painting...

Wednesday, April 18, 2012

WW: TUTU Cute :)

I know it's supposed to be Wordless Wednesday.. Wordless being the main word but you guys know by now I have issues keeping my mouth shut. In more ways than one :)

Since the addition and Lynlees rooms are done it was time to move the office. We made Lynlee's old room the office. I was shocked when Ryan woke up Saturday and said... Time to take up the carpet and put down the new floor. I was excited inside but also I knew I had a lot of painting moving to do.. But it's done. Well we need to hang some pictures and make it look more homey but there is computer desk and a computer in a new painted office with a new floor. I'm excited..

Other than all the working that's been going on here I have nothing... Working and eating.. That's all we have time to do.. Lynlee's eating has really taken off.. I love it.. Per our therapist we are still on pureed foods until we can get to therapy this week and work on the proper way for Lynlee to use a spoon. She doesn't shut her lips just takes food off with her teeth..

But here are some before and afters of a couple of dinners this week..

I swear she eats more than me..

I loved this picture and just had to share..

And this was supposed to be my wordless Wednesday.. It was finally warm enough last night to wear her Easter Jammies that Donna and Miranda got her. She wont sleep under a blanket at all so I really do have to wait until the house is warm.. TUTU cute :)

Friday, April 13, 2012

A day to remember!! (MORE COWS)

The past two days have been good great  Awesome.... Yesterday we had speech therapy and I left there feeling good. Really good. I learned more in the one hour I was in there with her than I have learned in a long time. She watched Lynlee eat and made a plan! I'm ready to go back and do whatever possible to get Lynlee talking and eating more...  But I'll write more on that after our next session when I have more to talk about and a better understanding on everything...

Pittsburgh called yesterday afternoon.. Lynlee's labs looked great and we go back for labs in one month.. Yes that's one month...

And today.. Well Aunt Heather took us to see some cows up close and personal. I hadn't prepared myself to be sooo close to the cows but Lynlee did amazing. We are so thankful for Aunt Heather and her our new family now. They really went above and beyond for Lynlee today and I can't tell you how much we appreciated it. It made her day.. And I know where Heather got her heart from :)

She HAD to take all of these to see the cows!!!

 Lynlee and Aunt Heather :)

 Petting the cow

 Up close and personal :)

 They even played on a tractor

 Made time to pick some flowers

Her new Best Friend. Lynlee loved Wesley!

 This was definitely a day to remember.. 

Wednesday, April 11, 2012

Easter, Birthday and more...

Things are good here! Really good! The weekend and past couple days have been beyond busy and I might be just about the worst person ever since after 3 Easter dinners we took 1 picture.. Yep just one.. I love taking pictures but I hate to feel like I need too and we are usually so busy visiting and moving on to the next dinner holidays fly by..

(Lynlee in Aunt Kara's chair)

Saturday night Lynlee sat her basket out to see if the Easter Bunny would fill it.. I think he lived us to his expectations. As soon as she got up on Sunday we ran in to see if he did.. She was soooo excited. I wish I would have video taped it. The golf set was a huge hit not to mention the Reese cups. HAHA..

Speaking of Reese Cups she is out of control with the eating and Easter candy. I'm loving every minute of it. We've been introducing every food possible and she seems to like everything except for Mac & Cheese? Really? She will eat Beets, Peas, anything else except that. She might be unAmerican. haha.

I made Lynlee an appointment at the Pediatrician yesterday to make sure we were right on track with everything. She has lost 6 pounds from when we were there last October. I know that sounds like a lot and it is for a 2 1/2 year old but she was very overweight. In October she wasn't able to crawl on couches, on her bed or on the island in the kitchen. She's quite the climber these days :)

(and stacker!!!)

(and she loves her daddy shoes)

We had labs Monday. Everything looks great and her EBV is trending back down. God is Good!

Yesterday was my birthday.. I made Ryan promise not to get me anything. I really don't need anything and we are trying to really save some money right now. So I have to tell you I was beyond surprised when I woke up to the sweetest letter I've ever read.. Followed by a card and dinner out.. It was the best birthday ever. Not because of some crazy expensive gift but because I spent it with the two people I love the most in this world. And people are right when they say money can't buy everything. Watching Lynlee eat food we ordered off the Kids Menu made my day.

In the craziness of Easter and Birthdays Lynlee had speech therapy this week and I made the decision to find a new therapist. I really believe Lynlee has needs the new therapist isn't well versed in. So as I was looking at our other options I came to realize we don't have a lot of other options. So starting tomorrow we are taking Lynlee to the hospital for Speech. We've had this option since we started the program but I've fought it. I didn't want her around the germs, in a hospital more than we should be, etc etc etc.. But you do what you have to do. And the only opening is Thursdays at 9am. Ryan laughed because it's hard for me and Lynlee to be up by 9am let alone out of the house and ready. We are not morning people for sure. I am excited to see what progress they can make.. I'll keep ya posted..

I think that's it. That should be us to date.. And before I forget April is Donor's Awareness Month.. Are you an Organ Donor?? Of course Ryan and I are. 

You can become an organ donor by here

And can you really look at this picture and say that you wouldn't have wanted to be her donor if something would have happened..

Don't Take your Organs to Heaven... Heaven knows we need them here!!!

Friday, April 6, 2012

Sour? NAH!

To "wake up" Lynlee's muscles in her mouth we've been doing different things to make her pucker. This was how the lemon turned out.... hmmm.. maybe next time! 

Wednesday, April 4, 2012

WW (umm who am I kidding?) no spill bubbles

I know I don't have to tell you how special Lynlee is.... She seems to get more gifts than any other kid I've ever seen. She has so many people that love her and it makes me feel beyond blessed. But this isn't that kind of post.. Not a mushy one that will make you cry.. It's a post to tell you she's already getting her Easter presents..

The first one was a Barney DVD that went in within minutes of it being opened.. But the other one from Merredith was No Spill Bubbles.. I have to admit I was a little weary of it, but it worked great. I recommend especially for toddlers that love to pick up the container etc..

And yes I know she is covered in bruises.. I almost opted out of Wordless Wednesday (like it's ever Wordless)  because she's covered. Her head and her poor legs. It looks bad, I know. People stare in Wal-Mart and one lady even commented on it. I get it.... But she's two. She is finally climbing, running, doing all the stuff she's supposed too, and she's going to bruise... And she's still on baby aspirin from surgery. I'm not sure when we will stop it but she bleeds a lot and bruises so much easier than normal. So I decided if I opted out this week I'd have to opt out possibly for the whole summer and that will not happen.. So overlook them and enjoy..

Lynlee doesn't have the blowing down yet. It's actually therapy for us to blow bubbles.. Getting her lips together is a struggle. Just like sucking a sippy or a straw hasn't happened YET.. She's never had that sucking sensation that "most" babies have.

My favorite shirt! HA!

For some reason,this one cracks me up.  

No spills :)