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.
Monday, January 31, 2011
Tuesday, January 25, 2011
Lynlee had her birth to three yearly evaluation last week. I have to say it wasn't as bad as I thought it might be. And as thankful that I am for what it was there was a part of me that will always be hoping we don't need it anymore.
No parent wants to hear that their child is delayed. i could go on and on about that statement but I won't because this time last year we wasn't sure how delayed she would be. We were never promised anything with Lynlee. We still don't know what damage that high ammonia in the very beginning did.
Lynlee has a 25% motor delay and a 40% speech delay. That's it. And I say that's it because I'm pleased with that. I know her speech will come. I mean she is my child, how can she not talk?? And her motor delay. She will get that too. She has came so far in the past two weeks. This time two weeks ago she was barely cruising around the furniture and this picture was taken this morning:
GO LYNLEE!!
Aren't those jammies the cutest thing you've ever seen?
Anyways, back on track. Her cognitive and receptive skills were right on track and in some places advanced. And I'm not sure if it's right or not but that is the most important to me. The fact that she can and is learning.
This very morning she was fussy, it was nap time, I looked down at her and she signed please. I asked her what she wanted and she pointed at the rocking chair. She wanted me to rock her to sleep.. And the fact that she will point at her books and open the first page and throw the book to the side and point again until we find the exact book she wants!! These are the things that matter the most to me.
For all of you wondering what's going on with the levels. Well we are kinda at a stand still right now. Her 36 threw everything off, which is a good thing, I think? So we will get a repeat probably next week unless they say they want it earlier and go from there.
No parent wants to hear that their child is delayed. i could go on and on about that statement but I won't because this time last year we wasn't sure how delayed she would be. We were never promised anything with Lynlee. We still don't know what damage that high ammonia in the very beginning did.
Lynlee has a 25% motor delay and a 40% speech delay. That's it. And I say that's it because I'm pleased with that. I know her speech will come. I mean she is my child, how can she not talk?? And her motor delay. She will get that too. She has came so far in the past two weeks. This time two weeks ago she was barely cruising around the furniture and this picture was taken this morning:
GO LYNLEE!!
Aren't those jammies the cutest thing you've ever seen?
Anyways, back on track. Her cognitive and receptive skills were right on track and in some places advanced. And I'm not sure if it's right or not but that is the most important to me. The fact that she can and is learning.
This very morning she was fussy, it was nap time, I looked down at her and she signed please. I asked her what she wanted and she pointed at the rocking chair. She wanted me to rock her to sleep.. And the fact that she will point at her books and open the first page and throw the book to the side and point again until we find the exact book she wants!! These are the things that matter the most to me.
For all of you wondering what's going on with the levels. Well we are kinda at a stand still right now. Her 36 threw everything off, which is a good thing, I think? So we will get a repeat probably next week unless they say they want it earlier and go from there.
Tuesday, January 18, 2011
A better week!
Last week was much of a roller coaster. There were so many up and down emotions. So much research done. So many tears shed and so many nights of tossing and turning and wondering "what if."
This is going to be a better week! We got an ammonia today.. 36. Do you know how long it's been since we've seen a result that low? November 2nd. It was 21 then, and we've been on one hell of a ride since November. I'm not counting my chickens before they hatch because I know next week it could be up again, but we will take it one day at a time. And this week will be a good week!
On Saturday I got a phone call from Dr. Vockley. Yes, you heard that right. I actually got a phone call from a Dr. on a Saturday on a Holiday weekend.. How often does that happen? I was a little shocked myself. But he was calling to say that Lynlee's labs came back and she still had a UTI (or another one?) and he was calling her in an antibiotic.
Hopefully these infections have been the cause of all her problems. I'm trying not to get my hopes up. Last week was a real eye opener. It showed us that we aren't "safe" from a liver transplant. Even if we have pushed it back a few weeks, a few months, maybe even years that it still might come one day.. And we will deal with all of that when it comes.
I want to Thank so many of you. The response I got from the last blog was amazing. All the thoughts, prayers, good energy. I know that's why we got an amazing number today. So please keep Lynlee in your prayers. Because if we have to transplant one day or stay and fight the battle of Citrullinemia we are going to need them.
This is going to be a better week! We got an ammonia today.. 36. Do you know how long it's been since we've seen a result that low? November 2nd. It was 21 then, and we've been on one hell of a ride since November. I'm not counting my chickens before they hatch because I know next week it could be up again, but we will take it one day at a time. And this week will be a good week!
On Saturday I got a phone call from Dr. Vockley. Yes, you heard that right. I actually got a phone call from a Dr. on a Saturday on a Holiday weekend.. How often does that happen? I was a little shocked myself. But he was calling to say that Lynlee's labs came back and she still had a UTI (or another one?) and he was calling her in an antibiotic.
Hopefully these infections have been the cause of all her problems. I'm trying not to get my hopes up. Last week was a real eye opener. It showed us that we aren't "safe" from a liver transplant. Even if we have pushed it back a few weeks, a few months, maybe even years that it still might come one day.. And we will deal with all of that when it comes.
I want to Thank so many of you. The response I got from the last blog was amazing. All the thoughts, prayers, good energy. I know that's why we got an amazing number today. So please keep Lynlee in your prayers. Because if we have to transplant one day or stay and fight the battle of Citrullinemia we are going to need them.
Tuesday, January 11, 2011
Not what we wanted to hear
On Wednesday maybe Thursday, we got a phone call from Pittsburgh saying they wanted to see us on Monday instead of waiting two weeks. They wanted to get Lynlee in there, get her blood work, and they wanted to talk to us about Liver Cell Transplant.
Of course I started getting all the info I could on the liver cell transplant. Why would they want to try that after all this time? Has anyone done it? Could it be a cure?
Well to answer all those questions. It has been done and it's usually done as a hold off until you can get a liver. They go in and put cells into the liver hopefully (which has never worked other than rats and monkeys) to rejuvenate the liver cells and the liver is cured. If (or more likely WHEN) the cells go bad you either do the procedure again or get a transplant.
But my main question is why Lynlee? Why now? Well that was answered yesterday and in a way I didn't want it to be. I've always said I never wanted to talk transplant unless Lynlee becomes uncontrollable and that is our last resort to save her life.
Lynlee's ammonia was 91 yesterday. Not good at all. They are making some changes in her formula, they have her on an antibiotic in case there is an infection in her gut that isn't showing, we are doing more test. But after it's all said and done they feel like she is on the edge of instability.
They want us to get a liver evaluation immediately and hopefully we never need it. But if in two weeks what they have done isn't working we need to act quickly to make decisions for Lynlee.
We can try the liver cell transplant or we can just transplant the whole liver.
It's scary! We know that her levels cannot stay a 91. They can for a while but after so long brain damage can occur. We have to get it down and keep it down or we have to transplant.
So I'm asking each of you that read this to keep Lynlee in your prayers or whatever higher power that you believe in. I myself believe in God. I pray that a decision does not have to be made that her levels stabilize and stay that way. I also pray that if a decision has to be made we make the right one for her.
Of course I started getting all the info I could on the liver cell transplant. Why would they want to try that after all this time? Has anyone done it? Could it be a cure?
Well to answer all those questions. It has been done and it's usually done as a hold off until you can get a liver. They go in and put cells into the liver hopefully (which has never worked other than rats and monkeys) to rejuvenate the liver cells and the liver is cured. If (or more likely WHEN) the cells go bad you either do the procedure again or get a transplant.
But my main question is why Lynlee? Why now? Well that was answered yesterday and in a way I didn't want it to be. I've always said I never wanted to talk transplant unless Lynlee becomes uncontrollable and that is our last resort to save her life.
Lynlee's ammonia was 91 yesterday. Not good at all. They are making some changes in her formula, they have her on an antibiotic in case there is an infection in her gut that isn't showing, we are doing more test. But after it's all said and done they feel like she is on the edge of instability.
They want us to get a liver evaluation immediately and hopefully we never need it. But if in two weeks what they have done isn't working we need to act quickly to make decisions for Lynlee.
We can try the liver cell transplant or we can just transplant the whole liver.
It's scary! We know that her levels cannot stay a 91. They can for a while but after so long brain damage can occur. We have to get it down and keep it down or we have to transplant.
So I'm asking each of you that read this to keep Lynlee in your prayers or whatever higher power that you believe in. I myself believe in God. I pray that a decision does not have to be made that her levels stabilize and stay that way. I also pray that if a decision has to be made we make the right one for her.
Tuesday, January 4, 2011
Waiting and worrying
Ive wrote this before, and you've read this before. This blog is so much of a repeat that it makes me sad. Lynlees levels are still crazy. Still so much higher than our "normal." After two blood draws yesterday, we got a 79. I hate a 79. And I'll even state the obvious, it's either going to go up, down, or stay in the 70's. I hate this waiting, worrying, over analyzing every thing she does.. Of course, I pray that it goes down. I'm not even selfish at this point, I'll even take it staying the same until our next appt (the 18th) in Pittsburgh.
I've been in contact with our team. I think I worry enough for all of us. They didn't seem to be alarmed by this? I was secretly hoping they would say we want to see Lynlee tomorrow in the office or even next week? But no, they we said the 18th is fine, and let us know if something changes... So I'll wait....
Lynlee has been more than fussy today.. Is it ammonia? I don't know, but I've been watching her like crazy. Other than that she seems just fine. It could be those nasty molars poking through the skin. The poor kid has cut two teeth in December and her molar is sooo close. I'm sure it makes her fussy..
So I'll wait. And I'll watch her too close. And I'll over analyze every single thing because that's what I do. Because I'm her mom!
I've been in contact with our team. I think I worry enough for all of us. They didn't seem to be alarmed by this? I was secretly hoping they would say we want to see Lynlee tomorrow in the office or even next week? But no, they we said the 18th is fine, and let us know if something changes... So I'll wait....
Lynlee has been more than fussy today.. Is it ammonia? I don't know, but I've been watching her like crazy. Other than that she seems just fine. It could be those nasty molars poking through the skin. The poor kid has cut two teeth in December and her molar is sooo close. I'm sure it makes her fussy..
So I'll wait. And I'll watch her too close. And I'll over analyze every single thing because that's what I do. Because I'm her mom!
Saturday, January 1, 2011
Happy New Year!!
Hello 2011!! I can say that we are more than happy for a New Year! So bring it on!
Our last 6 months has been fantastic, but we had a really ruff start to 2010. Until I sat down and thought about it's crazy the things we've been through in a year. We had 3 ammonia rises and 2 surgeries in 2010. Those were all hard. But this is a New Year. And using the word's of my friend Mindy, "This is Lynlee's year!"
I'm not one to make resolutions! I mean I could, and probably need to, but I won't call them resolutions. I feel if there is something I want to do I will do it when I want to. I Need to lose about 20 pounds, but I have to do it for me not for some silly resolution. I should stop worrying about how clean my house is and play with Lynlee a little more. I've gotten better at this, but I still have room to work on that. And the one thing I need most of all. To have more "me" time. Will this one happen? Hmm, probably not, but hey I have next year.. :)
I wish for each of you a Happy, Heathly (especially my UCD family), and Weathly New Year! Don't take each day for granted (I know we won't) Don't stress about your resolutions, and Slow Down and Enjoy Life.
To a New Year!!!
Our last 6 months has been fantastic, but we had a really ruff start to 2010. Until I sat down and thought about it's crazy the things we've been through in a year. We had 3 ammonia rises and 2 surgeries in 2010. Those were all hard. But this is a New Year. And using the word's of my friend Mindy, "This is Lynlee's year!"
I'm not one to make resolutions! I mean I could, and probably need to, but I won't call them resolutions. I feel if there is something I want to do I will do it when I want to. I Need to lose about 20 pounds, but I have to do it for me not for some silly resolution. I should stop worrying about how clean my house is and play with Lynlee a little more. I've gotten better at this, but I still have room to work on that. And the one thing I need most of all. To have more "me" time. Will this one happen? Hmm, probably not, but hey I have next year.. :)
I wish for each of you a Happy, Heathly (especially my UCD family), and Weathly New Year! Don't take each day for granted (I know we won't) Don't stress about your resolutions, and Slow Down and Enjoy Life.
To a New Year!!!
Subscribe to:
Posts (Atom)