Today was a day I could've laid around all day. One of those days when you didn't really want to face the world and all that was happening around us. You know what I'm talking about right? Staying in your pajamas, no shower, no makeup, no seeing anybody.. Yes, after yesterday I could have had that day.
Yesterday we went to Pittsburgh for Lynlee's appointment. I usually dread these appointments due to all the traveling, the waiting, etc. I was especially dreading this one because on Tuesday I had got a phone call from the transplant team wanting to get Lynlee an evaluation. I wasn't prepared for this, and I knew this was going to be the topic we were discussing yesterday.
Of course I was right, but it wasn't as bad as I thought. We met with the doctor and came to the following understanding. We are going to get Lynlee's evaluation done, but we aren't listing her. We are giving her a few more months to see how she does. At the age of two kids stop growing as much, and it's harder for UCD kids because they aren't using that protein to grow. Some kids get really "sick" when this happens. Due to Lynlee's past up and downs we really don't know if she will make it through this with stable levels. So we have to be prepared.
I've come to a place where I know my team knows what they are doing. And I know the minute they tell me we have to get her on the list, we will. No questions asked because they've done all they can do to keep her stable. Don't get me wrong. This isn't a good place to be in, but I know I have to be comfortable with every decision made because there is no going back no matter what the outcome may be.
So knowing all of this I didn't just lay around today. I got up, got dressed, and faced the world. If I do nothing else for the rest of the day, I've accomplished something.
Friday, March 25, 2011
Friday, March 11, 2011
"I Love You"
I don't know much sign language. Just what I pick up from Lynlee's therapist when they stop in. One of them wrote down a website for me that has all of the signs and can teach me how to sign properly. I go to it time to time when I think of one that I really want Lynlee to pick up.
Today I was walking through the house and thought I need to double check myself on "I LOVE YOU." I wanted to teach Lynlee how to say it. Then I stopped. I don't need to teach Lynlee how to say I love you, when she shows me everyday. Every morning when I go get her out of her bed and she is soo happy to see me. She loves me! When she hugs me for no reason, or comes all the way across the room just to give me a kiss, she is telling me she loves me. Every single night when she won't go to sleep without kissing me and Ryan, she is telling us she loves us.
Yes, we need to tell those of us we love that we do love them. But more importantly we need to show them because even those times we forget to say it, they always know it from the way we show them.
I will teach Lynlee to sign I Love you, eventually.
Today I was walking through the house and thought I need to double check myself on "I LOVE YOU." I wanted to teach Lynlee how to say it. Then I stopped. I don't need to teach Lynlee how to say I love you, when she shows me everyday. Every morning when I go get her out of her bed and she is soo happy to see me. She loves me! When she hugs me for no reason, or comes all the way across the room just to give me a kiss, she is telling me she loves me. Every single night when she won't go to sleep without kissing me and Ryan, she is telling us she loves us.
Yes, we need to tell those of us we love that we do love them. But more importantly we need to show them because even those times we forget to say it, they always know it from the way we show them.
I will teach Lynlee to sign I Love you, eventually.
Thursday, March 3, 2011
What's in a Song?
I used to listen to music all the time. From the minute I got into the car until I reached my destination. When I was working out, getting ready of a morning, cooking, cleaning, etc. Somewhere along the line I lost all of that and I miss it. I don't know if it's because I don't drive very far these days and if I do Lynlee's movies are always playing in the back seat. Most days I don't even get ready and when I do Lynlee is in there keeping me busy, same with me cooking, cleaning, etc. I won't even mention my lack of working out, even though I do Love the Zumba music in class :) But I don't have that silence I used too, and I don't miss that. I love the fact that Lynlee is babbling something in the back ground.
I'm amazed with out music touches us. Whether it's the song that we pick when we get married to the song that soothes our babies to put them to sleep. If we want to feel happy or sad, feel better or worse there is always a song that will do.
Ryan and I walked down the aisle to Me and You by Kenny Chesney. I smile when I hear that song because it's so perfect for us. I laugh when I hear the song "All I want to do" by Sugar Land because I know how much my sister hates it. I find myself singing it more loudly than I would just to annoy her even though she isn't there. I cry when I hear the song "I loved her first" by Heartland because I find myself praying that Ryan will get that moment with Lynlee. I could go on forever with the way songs make me feel. Even in Zumba the other night I looked at the girl beside me and said, that song makes me want to take a shot of something. HAHA.
Lynlee has always loved music. From day 1 when we would go lay down for the night in Pittsburgh we would leave music on for her. She has a lullaby machine that she (or I) can't sleep without now. The other night she spent the night with Ryan's parents and I found myself turning it on just so I could sleep. She loves the Itsy Bitsy Spider and does her own motions to it. We do "If your Happy and you know it" for hours and just switch up the motions. We clap our hands, scratch our head, praise God, etc, etc, etc.
After writing this I've realized I'm not really missing my music. I've just changed my preference of the tune.
I'm amazed with out music touches us. Whether it's the song that we pick when we get married to the song that soothes our babies to put them to sleep. If we want to feel happy or sad, feel better or worse there is always a song that will do.
Ryan and I walked down the aisle to Me and You by Kenny Chesney. I smile when I hear that song because it's so perfect for us. I laugh when I hear the song "All I want to do" by Sugar Land because I know how much my sister hates it. I find myself singing it more loudly than I would just to annoy her even though she isn't there. I cry when I hear the song "I loved her first" by Heartland because I find myself praying that Ryan will get that moment with Lynlee. I could go on forever with the way songs make me feel. Even in Zumba the other night I looked at the girl beside me and said, that song makes me want to take a shot of something. HAHA.
Lynlee has always loved music. From day 1 when we would go lay down for the night in Pittsburgh we would leave music on for her. She has a lullaby machine that she (or I) can't sleep without now. The other night she spent the night with Ryan's parents and I found myself turning it on just so I could sleep. She loves the Itsy Bitsy Spider and does her own motions to it. We do "If your Happy and you know it" for hours and just switch up the motions. We clap our hands, scratch our head, praise God, etc, etc, etc.
After writing this I've realized I'm not really missing my music. I've just changed my preference of the tune.
Monday, February 21, 2011
No Guarantees
A week ago I posted on facebook "just got the best news ever." I was talking about getting a new sister-in-law but half of those reading my post assumed I was pregnant. It was bitter sweet when I told everyone they were wrong.
My first response was wow, these people are crazy! I mean I would love to have another baby. If I was guaranteed a "healthy" baby I would try again tomorrow. But that's the problem I'm not guaranteed a healthy baby. I have a 1 in 4 chance to have another child with Citrullinemia. 25%. Not a high number, I know. But it's still a 25% chance.
I've heard of a family in Canada that their last 5 out of 6 children had Citrullinemia. And I've been following a blog of this incredible women who has been through so much, but her last 4 boys have had the disorder. So it's totally possible.
I pray every night for a cure. To cure Lynlee and for a future for Ryan and I have more children someday. I'm always hoping we will look back at all of this one day and say that it wasn't so bad, and we are willing to take that chance. But how do you do that? How do you bring another child in this world knowing all the blood work and procedures you put them through? I'm not judging any other mother than has made that decision. Because hopefully one day I will make that too?
I remember the biggest worry when I was pregnant would be if I would be a good mother. I would ask Ryan this question at least once a week, to the point I would irrigate him. And I'm not one the brag, but I think I've done pretty well. So well that I would jump at the chance to do it all again..
*Sigh*
But until we have a cure, or until I put it in God's hands I'll continue to spoil the amazing daughter we do have.
My first response was wow, these people are crazy! I mean I would love to have another baby. If I was guaranteed a "healthy" baby I would try again tomorrow. But that's the problem I'm not guaranteed a healthy baby. I have a 1 in 4 chance to have another child with Citrullinemia. 25%. Not a high number, I know. But it's still a 25% chance.
I've heard of a family in Canada that their last 5 out of 6 children had Citrullinemia. And I've been following a blog of this incredible women who has been through so much, but her last 4 boys have had the disorder. So it's totally possible.
I pray every night for a cure. To cure Lynlee and for a future for Ryan and I have more children someday. I'm always hoping we will look back at all of this one day and say that it wasn't so bad, and we are willing to take that chance. But how do you do that? How do you bring another child in this world knowing all the blood work and procedures you put them through? I'm not judging any other mother than has made that decision. Because hopefully one day I will make that too?
I remember the biggest worry when I was pregnant would be if I would be a good mother. I would ask Ryan this question at least once a week, to the point I would irrigate him. And I'm not one the brag, but I think I've done pretty well. So well that I would jump at the chance to do it all again..
*Sigh*
But until we have a cure, or until I put it in God's hands I'll continue to spoil the amazing daughter we do have.
Friday, February 18, 2011
Another week down
Again, more than a week has gone by since my last post. It's not that I don't have anything to say because those of you that really know me knows that I always have something to say. But days are long here and nights are way to short. My nights are actually pretty routine which is good because if I had actually had to think about anything I couldn't do it. Since Ryan's been hurt I've taken on his feed at night. So now I'm up at 2am to feed, 4am to flush and back at 5:30 to feed again. When you go to bed at 11pm (because Lynlee's feed doesn't stop until then) and then up between 7:30 & 8am it's a short night.
Unlike any other week it's been very eventful. Oh I can't wait to have an uneventful week!! Last Friday my grandma was admitted back to the hospital. She had a blood clot on her lung and was just released on Wednesday. So we spend most evenings at the hospital keeping her company.
Last Saturday was a HUGE day for our family. Lynlee spent the night with Nana (my mom) for the first time ever. The only other time she has been away from home was when I was in Morgantown with Ryan in the hospital. So for us to just let her go was a very big deal. After the accident we realized that it could have been me in that car and that almost no one can take care of Lynlee. Ryan's mom is the only other person that can feed her other than Ryan and I. So we vowed to make sure that everyone can take care of her. Letting her stay with my mom was just part of that. The night was a huge success! I, myself, went on a girls night. It was the first time I've been out for over 2 years and I won't be able to tell you how much fun I really had, and how very needed it was!
From Sunday on it's been a blur. We got the news that we are welcoming a new sister to the family in September, and I couldn't be happier for Keith and Heather!!
Monday we went to get an ammonia level and Ryan and I were floored when it came back at 95. Pittsburgh wanted a retest on Tuesday morning so we headed out early because Ryan also had his follow up appointments in Morgantown that day. Ammonia on Tuesday was back down to 55. Not real sure what the problem was.
I'm pretty sure that Wendesday, Thursday and today was our normal. Our normal is no longer calm and uneventful days. Lynlee is into everything!! She now runs (which means scoots) when she sees her hookup for the feed. If she doesn't get her way she cries. If she does get her way and it's not what she really wanted she cries.. She is now into "time out" probably about a 1/4 of her day. I'm probably exaggerating on that one, but today was a lot. She just doesn't listen to the word No. She will look at something and shake her head NO, but still does it.
*All Advice on discipline to a 16 month old is appreciated*
So that pretty much sums up our week. Hope all is well with all of you guys out there!!
Unlike any other week it's been very eventful. Oh I can't wait to have an uneventful week!! Last Friday my grandma was admitted back to the hospital. She had a blood clot on her lung and was just released on Wednesday. So we spend most evenings at the hospital keeping her company.
Last Saturday was a HUGE day for our family. Lynlee spent the night with Nana (my mom) for the first time ever. The only other time she has been away from home was when I was in Morgantown with Ryan in the hospital. So for us to just let her go was a very big deal. After the accident we realized that it could have been me in that car and that almost no one can take care of Lynlee. Ryan's mom is the only other person that can feed her other than Ryan and I. So we vowed to make sure that everyone can take care of her. Letting her stay with my mom was just part of that. The night was a huge success! I, myself, went on a girls night. It was the first time I've been out for over 2 years and I won't be able to tell you how much fun I really had, and how very needed it was!
From Sunday on it's been a blur. We got the news that we are welcoming a new sister to the family in September, and I couldn't be happier for Keith and Heather!!
Monday we went to get an ammonia level and Ryan and I were floored when it came back at 95. Pittsburgh wanted a retest on Tuesday morning so we headed out early because Ryan also had his follow up appointments in Morgantown that day. Ammonia on Tuesday was back down to 55. Not real sure what the problem was.
I'm pretty sure that Wendesday, Thursday and today was our normal. Our normal is no longer calm and uneventful days. Lynlee is into everything!! She now runs (which means scoots) when she sees her hookup for the feed. If she doesn't get her way she cries. If she does get her way and it's not what she really wanted she cries.. She is now into "time out" probably about a 1/4 of her day. I'm probably exaggerating on that one, but today was a lot. She just doesn't listen to the word No. She will look at something and shake her head NO, but still does it.
*All Advice on discipline to a 16 month old is appreciated*
So that pretty much sums up our week. Hope all is well with all of you guys out there!!
Tuesday, February 8, 2011
Update 2/8/11
I didn't mean to go a whole week without blogging. I wanted to keep everyone up to date with how everyone was doing, but I slacked. Sorry.
Ryan and I went to Morgantown on Friday to get the staples out of his head. We arrived a few hours early to visit my grandma. She was actually getting ready to be released. On Wednesday (maybe Tuesday, my days ran together) she had surgery on her collar bone. So she was more than ready to get out of there. The staples seemed to come out easy and pretty painless.
Yesterday my grandma came to spend the day while my mom ran errands. It was so nice to spend the day with her.
After Lynlee was born I stopped taking people and life in general for granted. You never know what tomorrow may hold, and this past few weeks have proved that once again.
Yesterday Ryan and I went to see the car. It was a mess. They are so lucky to be alive. They are even more lucky to just have the injuries they do. I'm so lucky to have them, such strong fighters in my life.
Ryan and I went to Morgantown on Friday to get the staples out of his head. We arrived a few hours early to visit my grandma. She was actually getting ready to be released. On Wednesday (maybe Tuesday, my days ran together) she had surgery on her collar bone. So she was more than ready to get out of there. The staples seemed to come out easy and pretty painless.
Yesterday my grandma came to spend the day while my mom ran errands. It was so nice to spend the day with her.
After Lynlee was born I stopped taking people and life in general for granted. You never know what tomorrow may hold, and this past few weeks have proved that once again.
Yesterday Ryan and I went to see the car. It was a mess. They are so lucky to be alive. They are even more lucky to just have the injuries they do. I'm so lucky to have them, such strong fighters in my life.
Monday, January 31, 2011
God Answers Prayers!
Life is unfair! For some more than others, but these days I feel like our family can be the poster child for an unfair life. As much as I want to be mad, and scream at the world, I have this over joy of thankfulness that won't let me. I want to ask the question "why" but I won't because I know that God has a plan. He has a plan that we might know about but a plan indeed.
Do you ever wonder if God answers prayers?? Well he does! Let me explain!
Lynlee has an ammonia of 47 today! Not to shabby when this time two weeks ago we were talking transplant and afraid that this ammonia today might be putting us on a list. But God answered our prayers and it's not time for that yet.
Most of you know, but for those that don't we spent the weekend in the hospital again. Except it wasn't with Lynlee, she was the one that came to visit. Ryan and my grandma, and my little sister was in a terrible car accident on Friday.
Let me go back to Friday for you.. The three of them were going to Subway to grab lunch for all of us. My mom and I decided to stay here because Lynlee was napping. About 10 minutes after they left I got a call from Kara (my lil sis) saying they were in a wreck and to come. I asked her where they were and if everyone was okay. She start sobbing but finally got out they were in front of Bob Evans. I asked to talk to Ryan and she replied "he won't wake up!" those words still make me sick.
I ran Lynlee across the street to my sister and my mom and I went to accident. I don't know if I'll ever forget what I saw. Kara was standing there just crying and screaming.. I ran to the car and Ryan had this white sheet over him (they were cutting him out of the car) and I finally saw a corner of his face. He had oxygen on and I could tell his eyes were open. I looked at my grandma and she had this blank stare that haunts me.. And the blood, oh the blood was everywhere. It was all over both of them, all over Kara...It was awful.
They finally got them out of the car and loaded in the ambulance. They let me get in the ambulance and see Ryan. He was awake and he told me he loved me.
The next few hours were a blur. In the emergency room I just went from Ryan to Grandma a hundred times I bet. They decided they both need to be sent to Ruby to the trama center.
Ill save you the boring details of the next few hours and days. It was just a lot of waiting and sitting and waiting. Ryan came home yesterday with a few broken ribs, and a fractured collar bone, some staples in his head and some stitches in his lip.
My grandma is waiting to be moved to a step down room as I type. She has a collapsed lung (the chest tube should be out already) a cracked pelvis, broekn ribs front and back and a broken collar bone. She will be having surgery in the morning for the collar bone and she will be home soon.
We've found out that they were setting at the red light. The light turned green and they pulled out to go left toward subway when a tractor trailer ran the light and plowed into the driver side of the car.
So yes God answers prayers. Just look at my family to prove it.
Please remember them in your prayers for a speedy recover, and always remember Lynlee! And never lose your faith, because even through all the bad stuff that is the only thing that has kept us going.
Do you ever wonder if God answers prayers?? Well he does! Let me explain!
Lynlee has an ammonia of 47 today! Not to shabby when this time two weeks ago we were talking transplant and afraid that this ammonia today might be putting us on a list. But God answered our prayers and it's not time for that yet.
Most of you know, but for those that don't we spent the weekend in the hospital again. Except it wasn't with Lynlee, she was the one that came to visit. Ryan and my grandma, and my little sister was in a terrible car accident on Friday.
Let me go back to Friday for you.. The three of them were going to Subway to grab lunch for all of us. My mom and I decided to stay here because Lynlee was napping. About 10 minutes after they left I got a call from Kara (my lil sis) saying they were in a wreck and to come. I asked her where they were and if everyone was okay. She start sobbing but finally got out they were in front of Bob Evans. I asked to talk to Ryan and she replied "he won't wake up!" those words still make me sick.
I ran Lynlee across the street to my sister and my mom and I went to accident. I don't know if I'll ever forget what I saw. Kara was standing there just crying and screaming.. I ran to the car and Ryan had this white sheet over him (they were cutting him out of the car) and I finally saw a corner of his face. He had oxygen on and I could tell his eyes were open. I looked at my grandma and she had this blank stare that haunts me.. And the blood, oh the blood was everywhere. It was all over both of them, all over Kara...It was awful.
They finally got them out of the car and loaded in the ambulance. They let me get in the ambulance and see Ryan. He was awake and he told me he loved me.
The next few hours were a blur. In the emergency room I just went from Ryan to Grandma a hundred times I bet. They decided they both need to be sent to Ruby to the trama center.
Ill save you the boring details of the next few hours and days. It was just a lot of waiting and sitting and waiting. Ryan came home yesterday with a few broken ribs, and a fractured collar bone, some staples in his head and some stitches in his lip.
My grandma is waiting to be moved to a step down room as I type. She has a collapsed lung (the chest tube should be out already) a cracked pelvis, broekn ribs front and back and a broken collar bone. She will be having surgery in the morning for the collar bone and she will be home soon.
We've found out that they were setting at the red light. The light turned green and they pulled out to go left toward subway when a tractor trailer ran the light and plowed into the driver side of the car.
So yes God answers prayers. Just look at my family to prove it.
Please remember them in your prayers for a speedy recover, and always remember Lynlee! And never lose your faith, because even through all the bad stuff that is the only thing that has kept us going.
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