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.

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!!

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.

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.

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.

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.

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.