Yesterday we had Presley's Neurology appt with the pediatric Neurologist to find out more about her seizures that she has been having & the dreaded possible SWS. Good news is, that while yes Presley has a ton of markings all over her head/face, she said that she didn't agree with some of the other doctors that had seen her, and DOESN'T think she has SWS. (INSERT HUGE YAYYYYY and sigh of relief) but that because she has a few on her back, and most concerning the one that wasn't there when she was born but has developed and grown anyway, she still wants her to have an MRI to check for it, and of course to make sure her seizures aren't something crazy going on. She has to have that MRI (still has to be sedated for that) & an EEG of her brain. She said that she is hoping Presley's EEG will be able to be done without being sedated, so it just depends on if she can hold still enough, if not, she will sedate her for that too. SIGH, I HATE that sedation stuff, it makes me feel sick to my stomach. She also needs her blood drawn to check for some other things.
ANYWAY, on to much funner things, PRESLEY NOW WEIGHS 14 pounds! The little fatty lol! From her well baby check up on Monday to her appt yesterday, she gained 9 ozs!! Aaron & I kept saying we thought she seemed heavier, SURE enough, she is :) She is also 24 1/2 inches long, catching up to her sister nicely who is at 29 1/2 inches long. Presley is finally starting to fill out her 3 month size clothes well, and I have officially put away all the newborn & 0-3 month clothing. I will be honest here, don't judge me, I bawled my eyes out. It's bittersweet to know I won't ever have a tiny little baby wearing them again. Both girls have worn them, and it makes me sad memories won't be made in them anymore. I LOVE that Presley is getting bigger, but time is FLYING by, and before I know it they will both be in college. And THAT is the fact that makes me get this huge lump in my throat. I just wish time could slow down.
I've never really been afraid of growing old, but over the past few wks, my world has been changed, and now the future of what lies ahead scares me a little. There's that raw pain that the fear of the unknown brings. No matter how grateful one can feel or be, that doesn't mean situations aren't hard, and it doesn't take the pain away. But what doesn't kill you makes you stronger right? I have realized though, that while my body may have this disease, IT doesn't have ME. I'm thankful to know that. I have felt pretty defeated lately, and I was so SURE that this new year would bring wonderful and great things. I was very hopeful that it would be better than last year, because last year was HARD... and while January has made me it's bitch, I'm hoping that the next 11 months will be better. My new favorite quote is by Elizabeth Edwards. "She stood in the storm, & when the wind did not blow her way, she adjusted her sails". So while life isn't exactly how I would want it to be, I'm adjusting & even though I feel defeated a LOT lately, I'm still very grateful for the things I have.
I laid in bed this morning with my sweet little Libby who is sick, and we watched some cartoons while Presley napped in her swing. While that may not seem like the best to some, it was the best for me. Why you ask? Because Libby had her head on my shoulder all cuddled up with me & her blankey, and every so often she would look up at me & smile. Her sweet little face and her red little eyes because she was fighting naptime so hard, but the way her eyes sparkled and she would just randomly kiss my cheek... THAT is what makes my world go round. I could hear Presley being rocked by her swing, and seeing the steady rise & fall of Libby's chest as she finally fell asleep in my arms, my whole world felt complete. Sure I wish things in life could be easier, that people didn't have to get sick, and babies/kids didn't have to struggle, BUT all in all, I feel like my world is pretty darn good. I wouldn't trade my crazy life with anyone, because I love my life. I love the people in it, and that is what I'm thankful for, MY life. I'm thankful for the good times, because they are what get me through the hard times. I've had countless times in the shower where I've cried & sobbed, I've gotten good at the silent cry, but it makes me human. It makes me FEEL, and the thing about that, is that you can't possibly know how GOOD you have it, unless you have experienced the hard bad times too. And the truth is, The good FAR outweighs the bad.
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