Thursday, August 22, 2013

Random Thoughts Thursday

Every now and again I feel like I want to write about a subject. But I can't seem to get my thoughts together enough to do it.. Today seems to be one of those days. My brain is scattered. I have way to many topics running through my mind.

  • Lynlee's labs were prefect this time! PERFECT!! So they decreased her steroids again and we have labs in TWO weeks. Yay... We've been going weekly since July.
  • I done a bunch of research on kids with Apraxia (Lynlee's speech problem) and we've been giving her fish oil. In the past 3 weeks we've seen a huge improvement. My mind is blown!
  • Tomorrow is mine and Ryan's 5 year anniversary. Really? Where has the time went...
  • Lynlee starts school again on September 3rd.
  • Ryan and I are running a 5K at the end of September. We started training months ago. I'm proud of what we have accomplished because when I first started I couldn't even run for a minute and the fact that we run 3 miles now is amazing. I know if he hadn't started training with me there is no way I would keep up with it.
  • I seriously wonder if people think we drink daily. Every time I log into facebook someone tags me in a post about wine. I crack up. I can't remember the last time I had a glass of wine (or anything for that matter) at home!
  • Lynlee was given a trampoline. She was so excited about it. And after being on there a whole 10 minutes she hurt her knee. It's actually better today but she's been asking to be on it every day and we've had to tell her no.
  • And for all you weather people out there. I heard this winter we will have it snow as many days it rains... Just so you know :)
  • After all this time when people tell me they read my blog I get a little nervous. I never know what to say. In my mind no one reads it.
Okay I think that was everything running through my mind... Maybe...

Monday, August 19, 2013

Two Busy weekends

After two very busy weekends I'm happy to say I took the Monday off. Well if you say off and mean lots of laundry, toilet scrubbing, tons of paper work, and lots of phone calls then I have definitely had the day off.

The wedding was perfect. I haven't seen any of the professional photos yet but here is two my mom took right before Lynlee left. She already changed her shoes, took her head band off and had a sweater on but you get the point.

She wasn't the best flower girl in history. I had to carry her down the aisle and she refused all the pictures but two. But she was the cutest one I'd ever seen.

This past weekend we went to the lake. It was our annual trip. As always it was the most relaxing weekend of the year. There is something about the water that just calms me. Lynlee had a blast and even cried when we left yesterday.

We hope everyone is having a Happy Monday.

Tuesday, August 13, 2013

My kid plays doctor better than yours....

I'm not sure how true that title is but it kinda made me smile and sad at the same time. The things Lynlee does when we play amaze me. I guess I don't always give her enough credit of that stuff she knows or learns. She can give one heck of a doctor exam and always uses everything appropriately.

Today we were playing and she brought out these....

Then she .....

(warmed my finger)

put my blood in the tube..

she actually rocked the tube back and forth

and then she ....

We had labs this morning and she always leaves with what she can.

P.S. labs were better than last week :) This makes me one happy momma.

Thursday, August 8, 2013

Rock solid labs :)

I wanted to do a quick blog for a few reasons tonight. One our weekend and next week and weekend is already looking crazy so I'm not sure when I can fit it in. Two, I'm so afraid my computer is going to crash at any moment I'm not sure when I'll be back up and running. I keep getting this message pop up and we are still deciding if we are going to get it looked at or just buy another one. Nothing like waiting until the last minute. I do have everything backed up so I'm okay if it just crashes.

First things first. Lynlee's labs are rock solid. They are down to steroids just once a day again and weaning the dosage. That makes me so happy. We are still getting weekly labs but hopefully that can spread apart soon too.

She has grown soooo much over the past few months!!

Her favorite thing ever. We've been there twice this summer :)

Lazy summer afternoons
I'm a little excited for her cheeks to be back to normal size. I'm not a fan of the big ole cheeks. And I think that's why I don't have many pictures these days and besides that we are just busy.
We are reading for a huge wedding weekend. My best friend since (forever) is getting married and Lynlee and I are both in the wedding. I'll try to post pictures if I can next week..
Have a great weekend. I know we will :)

Thursday, August 1, 2013

Why I blog

From the day to day hustle of  things I often forget the reason I started this blog and why I'm still blogging. There are times I go days and weeks from it because I either get side tracked or I feel like nothing is going on that you would want to hear it about. I'm sure neither of those are true. I could probably blog daily about something cute and funny that Lynlee does and I want to start doing that more so I have good stuff on here too not just the medical.

I know I started this blog to remember things. Lynlee has an amazing story and I don't want to forget one minute of it.. And I want to share her story. I want to give someone the hope and faith we found through the years.  Just like the hope I found when I read Mindy's blog for the very first time. The first child I had ever seen with Citrullinemia.

So if you are reading this and have a very special child I want you to know this:
  • When the doctors tell you that your child might never see their first birthday or if they do they might never walk, talk or learn simple task they can be wrong!
  • There is so much more to life than the scary what ifs and life will get easier.
  • You will appreciate the small milestones much more than a parent has never been through what you have.
  • You will never take life or anything for granted!
  • Your bad days will be bad, but the good days will make up for it.
  • You can and will have to make hard decisions for your child, but you always know what's best for them.
  • Don't lose faith! Don't give up because they have probably fought to be here and we owe it to our babies!

I read once where it said "You never know how strong you are until you have to be." That is the most true statement I have ever read. I would do anything for the child. She is my whole world!