Thursday, June 24, 2010

The unknown

There are so many things in life I don't know or understand! Some on purpose, some I won't allow myself, and of course there are just things that none of us know! Allow me to elaborate.

I don't know how to work a weed eater! I don't want to know, and honestly if I never touch one in my life I'll be okay. They kinda scare me, and I just don't think I should have to weed eat, that's one job that's all Ryans. Grilling- Another thing that intimidates me? I can cook, bake, do whatever but don't ask me to use a grill! Handyman work, fixing things, etc just not my thing..

I don't have the time or you would get bored if I listed all the things in life I don't understand so I'll hit on the main ones. Of course it's Lynlee. I'll never understand why she has her disorder, why God thinks I'm the one that can take care of her, or the one that is strong enough to handle it? Because there are some days I question him. I know it's wrong to do so, but I think he thinks I'm stronger than I am. Ryan had an accident yesterday. He wrecked his truck, we are pretty sure it's totaled but have to wait for the insurance adjuster to make that call. My first thought was are you okay?? Are you sure you're okay?? Then when he told me how bad the truck was I freaked out. We are SO close to getting it paid off and now this. We aren't exactly rolling in the money these days with me staying at home, and I don't know how we can swing another payment? But none of that matters, and it will work out. Or so I'm told! But I do know that the accident could have been so much worse. He could have flipped, been thrown out, etc, but God was watching over our family again!

They say God won't give you more than you can handle.. But I just wish he wouldn't trust us as much!

Then there are the things I won't allow myself to know.. Example- Water on The Brain. When they told me that Lynlee had excess water on the brain my first thought was I have to Google it. But I didn't. I didn't want to know the side effects, the procedures, etc. I knew deep down Lynlee was fine! I wasn't allowing myself to Google something then dwell on it! I'm glad I didn't since she just has a big head like her daddy :)

Another thing I don't know much about. Liver Transplants. I do know that I don't want to go down that road and I hope that's not in our plans. Savannah has accepted her new liver and she is going home today! She is almost 7 months old, been home only 2 1/2 weeks since birth and that transplant saved her life!

I learn new things everyday, and that's what makes life living for. I look forward to life and what the future holds (as long as it's not weed eating or grilling!)

Trust in the LORD with all your heart and lean not on your own understanding. In all your ways acknowledge Him and He will direct your paths. Proverb 3:5-6

Monday, June 21, 2010

Oh Where, Oh Where

Have I been? Well to say the least life's been crazy busy. Not metabolic wise, Lynlee's been great. I hope I've never writing to you about high ammonia again, but I do know that's wishful thinking. However, I am doing better on not dwelling on it. We are "Living" more! Today was a monumental day. It was the first Monday in 15 weeks that I didn't drive to Weston. I did not get Lynlee's ammonia checked this week.. Yes, I repeat. I. DID. NOT. GET. LYNLEE'S. AMMONIA. CHECKED!! Shocked? Yea so am I, a little. I know we can't get it tested every week for the rest of her life and honestly I didn't even question my decision today. I know she is okay.

Last week was busy! Lynlee and I went to Weston (all by ourselves) for the ammonia check. I have only went by myself one other time. I'm spoiled like that, but it's hard work by myself. Before we were 10 minutes from the house she had gagged herself with her little fingers (yes, we are teething) and was throwing up in the back seat. I had to pull over. Not even 5 minutes later she had pulled all her toys off and was throwing a tantrum, so I pulled over again. The ammonia was 41, so we headed home. 10 minutes after we started home she pooped all of her outfit so we were changing clothes in the Sheetz parking lot, and I forgot her milk. This is why I don't go by myself.

Last week we also had Development, Occupational Therapy, and Speech Therapy. In general, she is doing well. Still delayed in the fact that she doesn't bare a lot of weight on her legs, and isn't pushing up all the way, or crawling or rolling over to her left side. I don't know about anyone else but I hate the word delayed! It's my natural instinct as her mom to take up for her. That she isn't pushing up because they have her calories up and she is 20lbs 14oz, that she will just do it when she is reading, and the list can go on and on. But to some she will be delayed..

Two days after they left Lynlee was pushing up (all the way up) with her arms, and on the third day she was rolling on to her left side. I don't think she likes the word delayed either!!!

This weekend Lynlee had her first time in the swimming pool. I knew she would either love it or hate it. Lucky for us she LOVED it. She would kick, and splash. My favorite part had to be when she would get so excited that she would pull my face and give me huge baby kisses. I'm not really sure if that's what she's doing, but that's what I'm saying! Regardless, there are few things better in life that slobbery baby kisses!

It seems that Lynlee has gave up her evening nap. So now if I'm lucky I get 3 30 minute naps for her a day. However, I'm going to try to blog at least twice a week. I don't like the fact that it's been 2 weeks, and now I'm trying to put all these events in one long blog instead of doing a few short ones and elaborating a little bit more.

Monday, June 7, 2010

Not knowing

At our last check up Pittsburgh told me that we could go every other week with checking ammonia. This week was the week we skip. Well it was supposed to be the week that we skipped, but I couldn't do it! I couldn't not know. I'm sure Pittsburgh, and some people think I'm nuts but I had to go. I had to pack all our hospital bags in the vehicle and go. Even Ryan told me this morning, she is fine. But there was that chance, the chance that the ammonia was creeping up and I'm scared to death of that. So I called Ryan's mom and we went.

Before she arrived I almost called her a million times to cancel while Lynlee played in the floor. She was blowing raspberries, chewing her fingers, being 100% normal, but when she showed up I didn't argue I went.

We got there, got the blood drew and took it to the lab. We usually know a result within 20 to 25 minutes. We waited, and waited, and waited.. Finally after 40 minutes I went up to ask about it. Maybe they forget we waited on the results, we've only been doing it EVERY. SINGLE. MONDAY for 13 weeks??? But the girl said it had 6 more minutes. Oh, I thought, they must have just been busy no big deal.

So 10 minutes later (yes, I'm counting at that point) they come to the door and told me they were going to rerun it! WHAT??? Was it high? (The only time I've ever known them to rerun it was because it was really high (like over 200) and the machine would rerun to make sure it was correct.) She wouldn't tell me anything just that she had to rerun it.

I, of course, freaked out. I can't even tell you all the things that were going through my mind. My biggest one was that I didn't know. Lynlee had no signs. Everything I thought I was looking for wasn't there. She was so normal! I was sick to my stomach! I went and called Ryan and Pittsburgh to give them a heads up. Then I went back to the lab (yes, I'm a huge pain the butt about all of this.) As soon as I walked up I was told it's still running. Well I figured that since it had only been 10 minutes, but I didn't say that.

I begged them to tell me what the first one was? Was it that high? If it was I need to know and I need to know now. Lynlee has to go on D10 we have to make transport decisions, etc... As I stood there begging for a number with tears rolling down my face I knew they would never understand what this was like for me! A high ammonia to them was just high ammonia. To me it's death. Finally she said, I can't tell you what it was because it wouldn't be accurate, the machine said there was an interference.

Are you kidding me? The machine malfunctioned and you didn't tell me?! That's the ONLY reason we are running it again? Would it have been that hard to tell me. UGH

So 15 minutes later she walked out and handed me the paper. 49.. A 49! Thank you so much for the considerate attitude, and friendly service. NOT!

Putting the drama behind me what I said was true. They will never understand what it's like to live for those ammonia results. The lab techs there will never understand what we've been through or continue to go through every day, but that's okay.

I agree with other mothers with children with this disorder. Not knowing is the worst part (other than what high ammonia causes.)To this day I'm still so scared that I won't know. That something bad is going to happen because I didn't catch it in time! What I wouldn't give for an at home tester like you test blood sugar. Yes Lynlee's poor fingers would probably be numb, but we would know! I would sleep a littler better at night, but until I'll drive to Weston. Maybe next week I'll actually skip a week? We'll see!

Wednesday, June 2, 2010

No news is good news!

Wow, where have I been? I'm not sure why it's taken me so long to do a follow-up from last week's blog! Almost instantly after posting I had good news on the phone! Our nurologist called and said that Lynlee's head ultra sound came back the same! Which was wonderful news. We didn't want a change and now no follow-up is needed! Finally some great news.

Then on Friday we had a phone call from our nutrionist. Lynlee's amino acid results came back and her body was a little low on the stored protein. Too much protein is bad, but so is too little. It's an extremely fine line and I'm so thankful for them to be there for us! So they made complete formula changes and wanted another ammonia checked on Tuesday just to make sure it wasn't going higher than 55. We took Lynlee yesterday and it was a 47!

Lynlee had an extremely busy weekend. We celebrated her first Memorial Day. We went to Valley Head for the day on Saturday. She got to experience her first pancake breakfast and her first parade. Her pappy was very proud of her and showed her off most of the day! We actually made it home around 9:30pm and she was wore out.

Sunday we spent the day with Ryan's parents and family. Lynlee got to try her baby pool out for the first time. I have to say I was way more excited about than she was (this happens alot in our house) and she lasted about 5 minutes and was ready to get out.

Then today was a big milestone for us! I took Lynlee for her weekly weight. Our result?! 20lbs 20oz. Oh how I've waited for this day. The day to finally turn the car seat around. YAY Lynlee, but you can stop growing now!