Sunday, April 1, 2012

Normal... we are getting there!

Things feel so normal now that it almost makes me normal. And for once I don't mean our "normal" I mean normal normal. Let me see if I can explain.  For over 2 years we've fed Lynlee through a tube.  We've measured medicine, had to feed her every 4 hour, and freaked out while she slept, etc.. That's all we've ever known. That was our normal everyday life. Well for the first time ever I feel like we are getting closer to the normal that everyone one else knows.

I know that I would never wish the things we've went through, the things Lynlee has went through, or still goes through on anyone, but I do know that I'm very thankful for the things it has taught us. We take nothing for granted! I know people say that, but we don't. Every meal that Lynlee eats is still a huge deal. Every new thing she does someone (not always you guys) gets a picture, call, or text. She is making huge strides.  And without all of this she would have been normal and I wouldn't be up blubbering about yogurt, spaghetti, chicken, etc, etc..

Lynlee's eating is going so great.. She went from not eating to eating over 3 meals a day. There have been days we'v'e only used her tubes for meds and liquids.. Drinking is still no there, but Rome wasn't built in a day right. The other night before she went to sleep she asked for something. She took Ryan to frig and showed him she wanted yogurt, sat on the couch and ate it. I know this is every day life for most of you, but to us well this is a miracle.  She melts my heart every time she takes me in there moves food around, turns around the yogurt to where she can see the kinds we have, etc.. I could write for hours on watching her eat, what she eats, oh the list could go on. But I'll spare you and just share a few pictures...

Yogurt is her favorite.. Eats 1-2 containers a day.

I know that "most" 2 1/2 year olds climb, run, jump etc.. Well even though Lynlee walked she never really did most of the other stuff. She struggled really. She seems to have become more agile (I'm hoping this is the correct word, it's way past my bedtime!) She is doing all of the them now.. And sometimes almost giving me a heart attack. I was getting my shoes on and using the bathroom when I walked out and saw this..

So I did what any mom would do.. RAN, locked the door and took a picture!  It was scary but I was sooo excited that she knew that she needed to be to open the door and plus she climbed up there all by herself.. The doors are now locked at all times!

We have very exciting, wild Friday evenings these days... See going topless :)

Lynlee totally cracked me up all day long. She wanted to wear a bib all day???? So we went to see cows (pictures to come!) and she wore it the whole time. She woudn't even take it off to put the other one on at dinner.. HAHA.. Here are the two bibs!

All in all this week was good. Her EBV count wasn't great.. It was worse. We made a med change and do labs in two weeks. I'm not going to lie I was scared. I was afraid we would be in Pittsburgh right now with a PICC line getting IV meds.. I'm afraid if the med change doesn't help this will be our next step. Prayers please..

Yes, it's late.. After midnight. I got very side tracked today. Got online to order something and spent 1 1/2 hours on Amazon?? Oh I can't wait for the stuff to get here. I'd tell you what I'm soo excited about but it would ruin the surprise!  And as you can see I'm very easily side tracked/ chatty tonight!

So this momma is off to bed... We are hoping for a fun family day tomorrow!!!

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