Tuesday, July 26, 2011

What's our anniversary?

It seems like everyone has an anniversary for ammonia. Everyone knows how long it's been since their child has been sick and I think everyone celebrates those days as they pass them.

Don't get me wrong I do know how long it's been since Lynlee was sick, but I don't really have a date. March 10, 2010 was the last time Lynle was life flighted from Weston to Pittsburgh with an ammonia of 233. July 19, 2010 we were able to drive to Pitt with an ammonia of 101. We were kept 2 nights for observation and Lynlee was ran with D10 never the ammonul to bring the ammonia down.

I would say we've past our year of being sick, but I'm not sure if that is true. I can't really celebrate something like that when January we had an ammonia of 91. Even two weeks ago we had an ammonia of 81 and then two days later it was 53.

I don't like getting comfortable because when it's a little high it's harder to deal with. We had went 6 weeks in the 50's and when the ammonia came back 80 I had a hard time. I stressed out. Part of me wants to believe that the transplant team turned us down for a reason, and I still want to believe that. A part of me still feels like they made a mistake that we can't live life bouncing from 80s to 50's.

Time will tell. Until then we will celebrate each day and hope for a good day tomorrow.

Sunday, July 24, 2011

Weekend Fun

It's no secret that it's hot outside!! But some of you might not know when it's so hot out it gets very dangerous for Lynlee. If she get to hot, burns too many calories than her body can become catabolic and her ammonia will get high. So I keep her in almost all the time. The moment she breaks a sweat I pour water into her. She's had more wet diapers this week than shes had in a while, but at least I know she's "safe."

Yesterday the temperature was cooler. Still in the 80's but better. So we took Lynlee up the Valley. We went swimming in the pool with Nana.



Then after a long nap we went and played in the river. My grandma has this great rock/road crossing that Lynlee and Piper loved.



And we can't forget swinging with Aunt Kara




Today was a pretty laid back family day for us! After a trip to Wal-Mart, we played outside for a few minutes..






Hope everyone enjoyed their weekend as much as we did!

Wednesday, July 20, 2011

Wordless Wednesday: Let's go for a ride

The fact that Lynlee is even sitting on the dinosaur is huge! And I can't believe she is riding it. We bought this months ago as a walking toy. She would scream every time we put it in the same room for her. I actually got it out to yard sale it earlier this month when she got on it and took off.. Go figure








(She was dancing in this one!)


See everyone next week!

Wednesday, July 13, 2011

Almost WW- A Day at the River

On Sunday we took Lynlee and Piper to the river! Both of them seemed to have the same reaction to it. After a little coaxing they both got in, but neither one of them loved it!!







(This Picture was taking like 2 seconds after the first one!) HAHA




(Lynlee loves throwing rocks!)

Friday, July 8, 2011

Hello Sleep!


This picture just makes me smile


Man, I feel good today!! Last night was the first night of real sleep I've got in a long time! Pittsburgh emailed me yesterday with Lynlee's formula change. Just a few minor changed due to her weight. So I asked if there was any way possible we could go from 6 feeds to 5? And they finally agreed!! I've been asking this for months! Starting last night we started feeding at bed time and then again early this morning like 5am. I know some of you reading this is thinking and that's good? But it is!! I was getting up at 2am, 4am, and then awake when Ryan fed at 5:30am. The fact that I get to sleep from 11 to 5 (and longer on the weeks it's Ryans turn) is huge! I was actually up and ready to go to the grocery store before 10am this morning!

Lynlee had her 6 month review with Birth23 yesterday! In January we set some year goals for you. One was a physical goal, walking, squatting, etc. The 2nd goal was a speech/communication goal. So heres where we stand. We had to set a new goal for the next 6 months with the physical goal since she's already met it! I was soooo pleased with this! The speech goal we kept. It's no secret Lynlee doesn't talk much, but she is improving. The word Nana is out more, and we hear the word "here" everyday now. In January Lynlee signed 3 words. When we did the count yesterday she can sign 20!

Oh, I almost forgot. Lynlee got her first haircut on Wednesday and did amazing!! She sat in the hair and thought she was hot stuff! Here are some pictures for those of you who don't have Facebook to see them!




I'm sure I could ramble more since Lynlee isn't here! She is spending the night with her Nana, and I honestly don't know what to do with my self! But I'm going to go get ready for Date Night with my husband!

Happy Weekend Everyone

Tuesday, July 5, 2011

Monday, July 4, 2011

Happy 4th of July


(Happy 4th of July to you!!!)

Saturday, July 2, 2011

Update 7/2/11

Warning: I haven't blogged in so long. I have so much to say, a scrambled mind, and a yard sale going on. This blog might not make sense, but who am I kidding? I don't always make sense.

Last weekend we went to the lake! I love the lake! There is something so calm and relaxing about being on the water. Lynlee loved it there also. She never wanted to nap, too much excitement and had loads of attention all weekend long. What more could she ask for? And after being terrified of the water for months we made major strides!




When we came home on Sunday we got our newest addition to the family. Meet Piper! One of my friends made a comment I was brave. I'm not sure brave is the word I would use. Maybe insane or even ignorant at times but not brave! Ha ha. But after having him almost a week things are much better. I'd say hes 80% potty trained and listening very well! Lynlee is doing pretty good with him. There are times when shes a little too ruff and he cries, but the cutest thing is when he cries she does too so I don't even have to yell at her :)




This week has been nothing but crazy! Getting ready for a yard sale is hard work. Let alone getting ready for one with a new puppy, a toddler and a scheduled trip to Pittsburgh. We (me, my mom and Lynlee) went to Pittsburgh on Thursday. We had our G-tube appointment. It had been almost a year since our last one and she went up 5 sizes! Yes, that was long over due, but we weren't having any trouble with the current one so I kept putting it off. Our genetics appointment was pretty normal and they said all the things I expected them to say. We've been very stable for the past 6 weeks. Lynlee's ammonia was 59 on Thursday. She's been staying in the 50's. Thank the good Lord! They also said they were floored with the results of the liver evaluation, and didn't necessarily agree with it. In the long run they still feel a transplant is the right thing for Lynlee and they will be fighting for it in August at our next appointment with the transplant clinic.

Last but not least, Lynlee experienced her first fireworks show last night! Even though she was more interested in the kids in front of us with their sparklers she watched some of the show. I'm always more excited about that stuff than she really is.

I hope everyone has a Happy 4th! Enjoy your holiday weekend!!