and I guess that means we survived another week. Although, judging by the calendar tomorrow is still part of this week… and… really? We have physical therapy in the morning. However, after the last five or so days I’m going to go ahead and call that the end of the week and start over tomorrow. I am quite a bit behind in updating, but not *as* behind as it seems. I’ve been writing like it’s 1999, retro-style, with pen and paper. HA! Who knew my penmanship is actually still legible? It started on Monday when I was having a rough morning and decided to take a few moments at the park with my coffee after dropping Alyssa off. It continued through the school week with me sitting in the sunshine for a while while Alyssa was at school. That vitamin D stuff must be *amazing* because it truly does adjust my mood.
At any rate, back to today. I’ve been trying to add new stuff to Alyssa’s diet on Fridays so that we have the three days with no school to make sure she’s tolerating everything OK. I spoke to Windrose yesterday and told them she’s still producing way more air than I’d like to see. We decided to up her quantity of “50s,” which are genitian and skullcap, to see if that will curb the excess gas in her tummy. She did sleep until 530 am this morning so perhaps it will actually curb that bloated tummy feeling. This morning I finally made her the protein/veggie enteral feed recipe. Much to my surprise? She tolerated 8 ounces of it prior to her nap. Yes. 8 OUNCES. AKA nearly 200 calories. Of course, the day quickly turned from fab to drab when I laid down to nurse a headache only to be awoken 5 minutes later. Ever had that happen? Yeah…makes the headache a LOT worse. So, I decided to give her a feed and then hand her off to daddy to go try to take a nap again. Only, of course it wasn’t that easy. This feed came back up since mommy got overzealous and gave it to her too fast. Joy. Ah well, after some tears were shed by both of us I went and laid down and Neil redid the feed. She spit up a bit but not nearly enough to count. Later on she got a “snack” of the fruit/grain recipe and then just before bed another 8 ounces of the protein/veggie one. Overall? We are for sure moving in the right direction. She is keeping down more than she’s not and her muscle control and alertness are improving daily.
I want to be all sunshine and lollipops about it but the reality is… it’s not all sunshine and lollipops. It would be GLORIOUS if a doctor could say “Oh do this, and every little thing will be OK!” However, that just isn’t going to happen. There are *so* many stinkin variables. I feel like we are on a rollercoaster and really? I’d just kinda like to be floating in the lazy river for a bit. Between the headache and the puke today I kinda wanted to run away from it all. It’s just so much sometimes. The math, the having to make everything in fear that something will have potato or soy in it, the thinking about everything she’s getting, everything she’s missing out on by puking it out, etc etc. It just gets overwhelming and mind-numbing at times. I break down, cry, and just want it to be freaking “EASY” for a day. I think in my head “THIS IS NOT FAIR!” and then I hear my mom’s voice echo back and say “Honey, life isn’t fair… who ever told you it was? Lied to you!” and roll my eyes a bit. It’s true though. We are all just playing the hand we are dealt and sometimes I’d like to just fold and walk away from the table. However, at the end of every day I am so so grateful for my little family unit… even if I don’t so much show it for a few hours during that day. 😉 Luckily when I get like that Neil is here to balance things out. I ran away for an hour and came back ready to handle things…sorta. That headache was kicking my butt. My mom dropped by for a bit and rubbed my shoulders while I fed Alyssa. Ah, moms… they really are great. Especially mine. She’s the perfect mom for me. Seriously. No one puts me back in my place quicker or with more honesty than my mother. Even if sometimes in the moment I don’t want to listen to what she has to say it always winds up echoing back later and making me go “Dangit! She’s right.” HAHA!
So, today was a rough day but for emotional reasons more than physical. Alyssa was in a better mood than she has been the last couple days and was moving around like crazy. Her head butting has decreased markedly and she’s trying so hard to sit on her own! Additionally if you prop sit her in front of a toy she’s holding her balance for quite a while which is awesome since she’d lost that skill for a while.
It’s things like this that remind me we are on the right track. We are making the decisions daily that are giving her the best life possible. We are taking it day by day and considering the variables that each day presents. They are definitely good reminders on days when I feel like everything is out of our control. I know in my heart of hearts that we make decisions together that make this little girl’s life the very best it can be… even if in the moment it is hard for me to focus on that. It’s hard to see past the day-to-day struggles. However, she’s so much clearer and more alert now than she was just a month ago. The last month has been a struggle and I’m sure there are going to be struggles ahead. I’m also sure there will be amazing days ahead. I’m so grateful that we muscle through the challenging days together as a family and then get to take the time to rejoice in the good days together. I know that soon we will find a new and better “normal” than the old one we had and all of this will just be a blurry memory. People said that about the NICU and I remember thinking “Yeah, right.” but you know what? They WERE right. Those days all run together in my mind like a movie on fast forward and one day these ones will too. So, I’m going to work on continuing to take one day at a time and work on remembering the GOOD parts of the days and letting the rough parts of the days fade away. I think that’s important because when I am looking back on it in fast forward later I want to remember the giggles, the babbles and the triumphs before I remember the other not so important parts of the day. 😉