Latley..

It's been awhile...
It's hard to believe that Thanksgiving has come and gone and we're only a couple weeks away from Christmas.. I love this time of year so much. Thanksgiving this year was so full of gratitude. I'm so grateful for my two angels.. One protective big brother and one sweet, spunky little girl. It's been so fun to see them play more together and get excited to see eachother. Bela can hardly wait for Benson to wake up in the morning. She always tries to sneak away and go knock on his door. She'll start up the stairs and I'll ask her where she's going and she'll say 'no,no' because she knows what i'm going to tell her. When he wakes up she squeals and giggles.


She's saying so many words and tries to repeat everything we say. She calls herself 'Wewa' and is usually carrying around her 'bag' or her baby. She's such a girl, her favorite word is 'pretty'. She is still obsessed with Yo Gabba Gabba. She wants to be bigger than she is, she wants to be a big 2 year old, but her tiny little body stops her from doing some 2 year old things. She tries riding her bike, but her legs don't even come close to reaching. I'm pretty sure they don't make bikes for 10 month olds? We very lovingly call her 'little'. She finally reached 19 lbs. As you can imagine, it's very difficult to try to get her eating by mouth and growing at the same time. There's a lot to balance. She needs enough food to grow, but also needs to be hungry enough to want to eat. If I feed her by tube at all during the day she dosn't want to eat. If she could she would survive on snacks every now and then when she feels hungry. A couple pretzels, some goldfish, cheezits. She will usually eat a pretty good breakfast, usually some kind of yogurt and toast, although she's starting to eat eggs, cereal bars, waffles, and pancakes. She likes pudding, mac n cheese, chicken, and snap peas. Very random, I know. She continues to keep me always guessing and wondering, as well as busy. Feeding her continues to be very time consuming. But she has stayed healthy and is somehow full of energy.



Speaking of healthy.. she is healthy until I take her in to get her montly RSV shots. Is any other heart mom as frusterated as I am with RSV shots? We try so hard to keep her healthy (and she has been, thanks to never leaving and serious sanitizing), but then I take her to get that shot and she's sick for a week. Really sick. Horrible, thick congestion, cough, fever, dosn't sleep, no energy. It's like they give her full blown RSV every month. Ugh. I'm seriously tempted to stop (she's supposed to get 4 more). Her reaction combined with my feelings towards vaccines make it very hard for me to take her in there each month. I literally force myself in those doors.
BUT, whats a heart mom to do? Sometimes I wish I wasn't the one who had to make all the decisions for her. But I don't make them alone and I'm grateful for that. Although I still worry about her so much, life has seemed to slow down so much lately and there is so much less stress. It has been wonderful to say the least. With her NG tube gone and her throwing up very minimal, it is like a whole new life. We only have to see the cardiologist every 2 months and she continues to get wonderful feedback from doctors. We couldn't be happier. It's amazing to witness a miracle every day of my life.





Hope you're all having a very merry Christmas time!