Friday, March 16, 2012

Friday Randoms

It's Friday evening... Lynlee is at her grandparents house for few hours. You would think I would be doing something other than sitting Indian Style on my bed blogging. Believe me I have plenty to do and I'm sure it would go so much faster since Lynlee isn't here but I just can't get my mind in it. I can't really wrap my mind around a lot tonight so it will probably end up being a pretty random blog...

Yesterday was a huge day! A monumental day for us!! For the first time since Lynlee was two days old she didn't have to be tube fed to get get nutrition. She ate it by mouth. And let me tell you the child ate! Even at 9pm last night she was still eating. It brought tears to my eyes. I did still use the tube for her water intake (we can't find anything that she just enjoys drinking) and for her meds.

Today has been a different story for us. Even though she has still ate it wasn't to that extent. But I know she isn't going to eat overnight either.

The last time I blogged I said we were going to be do monthly bloodwork.. Well that has changed. Lynlee's EBV level finally came back and it was higher than they want it. So we go in two weeks for labs again. I'm hoping it was just elevated from the fever and things the week before.

There isn't a lot going on here these days. The weather has been awesome. Lynlee and I have been out in the neighbor enjoying the days but we also spend a lot of time inside. Most of her days in her room playing. I still can't get over the fact she plays for hours in there. It's nice that we now have a room big enough for all her toys in there and she can see what all she has etc..

We play doctor a lot. Not to brag but I'm guessing she does play it better than most.

Check out the crazy bed head..

Checking her height and sporting the new jammies Aunt Erica brought over.

I didn't mean for all my blog pictures to be pajamas. We do actually get dressed around here. See the bright pink in the background? I'm loving the new room! And so is she..

Speaking of height and weigh. She has lost around 2 pounds since transplant. They aren't concerned at all. It's actually common for kids with Urea Cycle Disorders because she given so many calories to help with the ammonia etc. In Pitt last week she was in the 50th percentile for weight and 3percent for height. Like the kid stands a chance!

I found the urge to change up the blog a little. I'm not sure if I like the new layout or not? But I'll give it a few days and go from there.

Looks like we have a pretty low key weekend coming up. We have one birthday party and I'm sure house projects. That list doesn't seem to ever go away. We still have to tackle the office and paint a bathroom. Good news is. I should be showering in our new shower tomorrow!


  1. I love the layout...the color is so Spring! The new room looks so perfect too, I'd have LOVED that color when I was little. Heck, I'd love it now!

  2. Haha thanks Mindy. The bad part is I had to change it from the one I had so I could post on fb? I'm sure it was an option but I struggle with blogs. And there's something about the pink that makes me smile. Wonder why Ryan won't let me paint the whole house this color? Ha

  3. SO excited to hear that you had a day of no tube feedings! You must be so excited just to know that you are headed in the direction of a potential life without a g-tube. Even if it may be some time from now, just the difference that a few months makes from pre-transplant to post-transplant is awesome! Do you know why the transplant changed why she will eat by mouth now?

    Good luck finishing your home projects!