The doll house from yesterday's picture might be my favorite toy that Lynlee has! We bought it at Tanger Outlets last Friday and have already spent hours playing with it. It melts a little piece of my heart to walk in and see Ryan and Lynlee playing with it.
I do post the same pictures on here as facebook. Well most of them are the same. Why? Because some of the people that read the blog do not have facebook.
Ryan and I went to CJ Maggies for our Anniversary dinner. Does anyone else get really full when they stand up there? No matter how much or little I eat there I have to stand up to get full. Maybe I'm just weird?
Lynlee has been saying Momma!!! Not really to me, but just saying it. I get all excited and say "Lynlee, did you just say momma?" Every single times she looks at me and says Dada? But at least she is saying it!
I'm having my first "party" tonight. I've never had any kind of entertaining party at my house, so I've very excited about this. One reason is I've never found anything I've really wanted and another is I hate asking people to buy stuff. But I do love the 31 products and I don't really care if anyone does buy anything I'm just happy to have people over!
And finally the Pittsburgh updated: The Liver Doctor called me on Tuesday morning and said that they are kinda on hold about Lynlee. They want to get more info on Citrullinemia patients. Meaning they are calling all the other doctors and see if there is a pattern in the patients that went really high in birth that can be harder to control when they are older? Does that make sense? Here is an example. When Lynlee was born her ammonia went to 1200 in just 3 days, however some kids never go above 400 or so. So does that mean since Lynlees went so high she will be harder to keep stable? That's what they are checking into. If the studies show that it is true they might want to list her now, but if they don't I'm sure they won't. She has been very stable so why put her through a surgery she might not need or might do more harm? I know it's very confusing, and a lot of what ifs. They will be calling me when they talk to all the doctors again.
Thursday, August 25, 2011
Wednesday, August 24, 2011
Monday, August 22, 2011
3 Years
3 years ago today Ryan and I walked down the aisle as husband and wife! And walked into the our reception to "The Men In Black"
Happy Anniversary Babe! I love you!!
Happy Anniversary Babe! I love you!!
Sunday, August 21, 2011
Pittsburgh Trip
We got back from Pittsburgh on Friday evening around 7pm. I really wanted to blog that evening or yesterday morning, but we've been pretty busy so I'm just now getting around to it.
We went up Wednesday evening so that we could be at the 9am appt refreshed and ready for the day. It was never easy leaving here at 5am when Lynlee was a baby but now it's almost impossible! All in all I think the appointments went okay? I really don't know how to describe them or what side I'm on these days. I know there is a lot of confusion and lots and LOTS of praying going on. They are going to call me tomorrow and let me know their decision about the transplant. I honestly will be floored if they called and said we want to list her. Her level has been very stable the past few months and even though it's fluctuated on and off for a while she hasn't been really "sick" since last March.
I know this might sound crazy, but I find these appointments to be so much more emotional and stressful than most. Not a day goes by that I don't know she doesn't have this disorder. Every time we are in a restaurant and my child is the only child over 18 months old not eating, it gets pointed out. Not really, but I know.. Every 4 hours when I feed her by her tube or every other week when I watch her get blood work, I know.. But when you are there and the doctors point it out so clearly and the risk of this disorder it's harder to deal with. And it's been pointed out time and time again. I know what could happen if her ammonia goes to high and we don't catch it. I know everything that could go wrong! I also know all the risk of a liver transplant. We've been told every one of them! But when a doctor tells you that are weighing brain damage and a 2-8% chance of death it still hits me in the face! Those are the times I want to curl up in a corner and cry. That the hand she was dealt isn't fair and no parent should have to make these decisions and no baby should go through this.. Yes, this is how I feel after ever single transplant clinic. I'm scared to death..
But I also know that I can't feel like this every single day or I would hate the world. So I pray a little harder on these days.. That God will lead us in the direction that we are "supposed" to be going in and he gives me more strength on these days..
The whole trip wasn't this intense, there was a lot of fun to be had! We spent an extra night to do some shopping and most importantly take Lynlee to the zoo. Thursday evening we spent some time in the pool.
Friday morning we got up and headed to the zoo. I was sooooo excited for Lynlee! As we got there and started going on the thunder started. We did make it to the elephant house when the storm came. What a perfect place to be rained in for 20 minutes.. Lynlee loved it, and they ended up bringing all the elephants in. The pictures were taken by my phone so they aren't to great..
When the rain slacked up we headed to the Monkey House!
Lynlee's favorite part was probably the Aquarium. She loves watching the fish swim all over!!
We rented the Safari Jeep for her:
And by the time we were in the car and 5 minutes away this is what we saw :)
What a great way to follow up another stressful appointment! I'll keep everyone posted!!
We went up Wednesday evening so that we could be at the 9am appt refreshed and ready for the day. It was never easy leaving here at 5am when Lynlee was a baby but now it's almost impossible! All in all I think the appointments went okay? I really don't know how to describe them or what side I'm on these days. I know there is a lot of confusion and lots and LOTS of praying going on. They are going to call me tomorrow and let me know their decision about the transplant. I honestly will be floored if they called and said we want to list her. Her level has been very stable the past few months and even though it's fluctuated on and off for a while she hasn't been really "sick" since last March.
I know this might sound crazy, but I find these appointments to be so much more emotional and stressful than most. Not a day goes by that I don't know she doesn't have this disorder. Every time we are in a restaurant and my child is the only child over 18 months old not eating, it gets pointed out. Not really, but I know.. Every 4 hours when I feed her by her tube or every other week when I watch her get blood work, I know.. But when you are there and the doctors point it out so clearly and the risk of this disorder it's harder to deal with. And it's been pointed out time and time again. I know what could happen if her ammonia goes to high and we don't catch it. I know everything that could go wrong! I also know all the risk of a liver transplant. We've been told every one of them! But when a doctor tells you that are weighing brain damage and a 2-8% chance of death it still hits me in the face! Those are the times I want to curl up in a corner and cry. That the hand she was dealt isn't fair and no parent should have to make these decisions and no baby should go through this.. Yes, this is how I feel after ever single transplant clinic. I'm scared to death..
But I also know that I can't feel like this every single day or I would hate the world. So I pray a little harder on these days.. That God will lead us in the direction that we are "supposed" to be going in and he gives me more strength on these days..
The whole trip wasn't this intense, there was a lot of fun to be had! We spent an extra night to do some shopping and most importantly take Lynlee to the zoo. Thursday evening we spent some time in the pool.
Friday morning we got up and headed to the zoo. I was sooooo excited for Lynlee! As we got there and started going on the thunder started. We did make it to the elephant house when the storm came. What a perfect place to be rained in for 20 minutes.. Lynlee loved it, and they ended up bringing all the elephants in. The pictures were taken by my phone so they aren't to great..
When the rain slacked up we headed to the Monkey House!
Lynlee's favorite part was probably the Aquarium. She loves watching the fish swim all over!!
We rented the Safari Jeep for her:
And by the time we were in the car and 5 minutes away this is what we saw :)
What a great way to follow up another stressful appointment! I'll keep everyone posted!!
Wednesday, August 17, 2011
Wednesday, August 10, 2011
Thursday, August 4, 2011
Randoms
I haven't blogged in what feels like forever! I just looked and it's only a little over a week. The bad part is everyday I plan or think about blogging but I just can't get my thoughts together enough to do it. How sad is that? But yesterday one of my friends blogged with random thoughts! So Mindy, I'm so stealing your idea!
Lynlee had an ammonia check this week! 61. We've been running in the 50's anyways so 60's is just fluctuation.
Lynlee is running now! It's by far the cutest thing I've ever seen. She swings her arms an just goes! I love it!!
Piper and Lynlee are best friends an enemies at the same time :)
Everyday when I blow dry my hair Lynlee comes into the bathroom and gives me my hair straightener because she know I use it next.
I love the fact that even if I just leave to Zumba for an hour when I walk back into the house Lynlee runs to kiss me hello!!
I'm so thankful that I can stay home with her and experience every single thing!!
I will never be an extreme "couponer" but I did save 10 dollars in coupons the other day and was very excited about it.
Holding a drum for Lynlee to hit with her drum stick is like holding a nail for Ryan to hit with a Hammer. Not smart!
The month of August is going to be very busy for us, so I'm apologizing a head of time for my lack of blogging. We are going back to the lake next weekend, followed by a trip to Pittsburgh for Lynlees follow up transplant eval and a trip to the zoo. Plus you throw in a baby shower and a bachelorette party, you have a pretty packed month.
Hopefully we will be doing wordless Wednesday next week, if I can get my act together!
Lynlee had an ammonia check this week! 61. We've been running in the 50's anyways so 60's is just fluctuation.
Lynlee is running now! It's by far the cutest thing I've ever seen. She swings her arms an just goes! I love it!!
Piper and Lynlee are best friends an enemies at the same time :)
Everyday when I blow dry my hair Lynlee comes into the bathroom and gives me my hair straightener because she know I use it next.
I love the fact that even if I just leave to Zumba for an hour when I walk back into the house Lynlee runs to kiss me hello!!
I'm so thankful that I can stay home with her and experience every single thing!!
I will never be an extreme "couponer" but I did save 10 dollars in coupons the other day and was very excited about it.
Holding a drum for Lynlee to hit with her drum stick is like holding a nail for Ryan to hit with a Hammer. Not smart!
The month of August is going to be very busy for us, so I'm apologizing a head of time for my lack of blogging. We are going back to the lake next weekend, followed by a trip to Pittsburgh for Lynlees follow up transplant eval and a trip to the zoo. Plus you throw in a baby shower and a bachelorette party, you have a pretty packed month.
Hopefully we will be doing wordless Wednesday next week, if I can get my act together!
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