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..


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!!

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.