Our Little Lily Bug is 10 months old- well, make that 10 1/2 months and rapidly approaching a year old.
I marvel daily as I watch her little personality unfold. Ever since we switched her onto the special formula, it has just been getting better and better. She is so happy and content now and just - thriving! We're really getting to know a side of her that we hadn't been able to for the first 8 months of her life.Not only is she doing better, but I think I can feel more now, too. It's interesting, I felt really emotionally numb and detached for so many months -when she was hospitalized for RSV and then when Elena was diagnosed a few weeks later. (And add to that the general mind-numbing lack of sleep that comes with an infant.) I remember when I heard about a baby who passed away from SIDS, about a month after Elena was diagnosed. I can remember hugging Lily fiercely and feeling a huge wave of fear sweep over me. But then it was like my feelings were so overwhelmed, that they short circuited. As I looked at Lily and contemplated what it would be like if she was taken away from me... I can't even describe what it felt like. I was such a wreck during that point in time - so beaten down and drained. I felt sad and scared and full of love for my little baby, but also empty and blank. I wondered how I would even be able to find the strength to cry if something bad happened. It was like I was looking at myself from outside of my body. I had stared horror in the face with Elena's diagnosis and been ravaged emotionally. I spent many months after that moment with Lily thinking and worrying and feeling guilty about my lack of feeling. And trying to feel again.
Those months when Lily was sick and hurting and only a shell of herself and we didn't know it and I was such an emotional wreck were dark, cloudy days, but now it feels like we have burst into brilliant sunlight. Lily has been such an extra special joy to me all these months. Seeing her sweet open mouthed baby grins and snuggling with her and watching her little accomplishments have been wonderful pockets of normalcy that have really helped me though when times have been rough. She's helped to pull me through - it's a special thing I will always share with her. She has been saving to me this year.
At almost 11 months, Lily...
- Can stand all by herself, with no support and take a few steps.
- Loves to make this pursed lips face and breath in and out through her mouth really fast ("hoo-hoo, hoo-hoo, hoo"). It cracks us up!




- Still tries to eat everything she can get her hands on - fluff, hair, bugs, food, toys, Christmas lights, you name it. :)
- LOVES the bathtub/shower. She loves taking baths and showers. Anytime she can wiggle her way into the bathroom, she starts calling out excitedly and crawls right up to the tub and stands up and shouts and smiles and tries to reach in. And if she hears water going for her bath or someone else's - forget about it! She can hardly function she gets so excited! :) She shrieks and talks and points and bounces and bangs on the edge of the tub to get in. Serious love.
- Has four (almost six - maybe eight?) teeth.
- Makes some really awesome "dorky" faces. It is hilarious, nerdy, endearing, and adorable all at the same times.
- Has FINALLY moved into Elena's room and is now consistently sleeping through the night. (Boo-yah! And mommy and daddy think that having their room back is heavenly!)
- "Dances" - she does this really funny bobbing thing while she's sitting or standing. She loves music.
- Is getting very smart. She just figured out how to remove the stopper from the bathtub to let the water out and how to put it back in. (I swear Elena didn't get that until she was like a year and a half or something.) She also knows how to get what she wants and is good at being sneaky and crawling away quick when we start to get after her. There's a little sass there. :)
- Is the busiest little thing! She's always on the move.

- Is a big snuggler. She likes to nuzzle your face and my favorite is when she's really sleepy and she snuggles her head into the curve between my neck and shoulder or after she's had a bottle in the night and she molds her little body into my arms.
- Says "whoa", "yeah", and "hi". "Mama" and "Dada" are a little more hit and miss, but I think they're coming.
- Is very vocal in general - more than I remember Elena being. Lily shrieks and screams (happy shrieks and screams) and says "Ooooo!" and babble, babble, babbles all day long.
- Waves "hi" and points at things. When she first saw the Christmas tree, she sat far away from it and "oooohed" and pointed at it for about half an hour. And whenever I take a video of her on our camera, she crawls over to watch it and starts jabbering and pointing at herself on the screen. It's pretty dang cute!
- Is very sensitive. It's something we noticed from her first few weeks and it looks like it's hanging on. The only way to sum it up is just... sensitive. She is upset easily by loud noises, cries when she sees Elena crying, loves to snuggle, sometimes cries when she knocks over the vase on our living room floor, gets distracted when we cheer for a new accomplishment and stops (although she smiles too at the cheering :)), and lots of other little things. She's a sweet, sensitive little thing and we sure love our tender girl. It's not that she's high-maintenance or crying all the time - quite the opposite, in fact- she is such a happy, content little baby - just in a more subdued way (At times. Remember how I said she loves to shriek and scream when she's excited? :)).
It's so interesting to see the differences between her and Elena! I mean, I know she and Elena are two totally different people, but I still marvel everyday- it seems like- at some new part of Lily's personality that shows itself that is so different. Elena has always attacked life with gusto - she was a very happy, outgoing baby. She was loud and friendly and bubbly and super-excited about everything. Lily is very happy as well, but usually more quiet and guarded. She is shy and can take a little while to warm up to people. It just takes a little bit for her to show her enthusiasm for things, but when she does, it is SO sweet. I love her all the more for it - the careful, selective way that she shows her pleasure and goes about life. I just love it. Both ways are fun - the Elena way and the Lily way.
Lily brings so much joy to our lives! We sure love our Little Lily Bug!
10 comments:
She's adorable! I'm so glad that the formula is working and she's finally thriving. Yay!
hoo hoo hoo hoo! I think thats my favorite part about her...what a sweet little baby you have....i think ill steal her and she will be mine and i will call her fluffy...
(anyone..anyone...? its a little different but come on..name it)
finding nemo....
Hi! This is Penelope, Mason's mom. I just wanted to let you know how grateful I am that you found my blog and started commenting! Those two comments have been so helpful! It's really nice to hear from someone who has gone through some of the same things I have as the parent of a child with cancer. Not only that, but I have loved reading little Elena's story of her courageous battle; she's a tough little girl!
Your blog has been so inspiring to read, and I want to thank you for all you have posted. I got lost reading it all these past few days, because there is so much helpful information; things the doctors and nurses don't tell you about. I can identify with so many of the emotions and trials. And I have found myself inspired and uplifted by your family's courage and strength through it all.
Your words in this post about feeling detached for a while really struck home with me. I think it's a survival instinct; one of the big things that helps us get through times like these. We become a bit distant, to the point where we can deal with whatever comes next. Otherwise, we'd be helpless, crying piles of tears, and breaking down every other minute. At least that's how it is for me...I'm still in that stage, and can relate to your feelings.
But before I get all emotional on you, I just want to say thanks for your comments, because they have really helped! And I am so sorry to hear about Elena having the same trouble with her port being accessed; what a terrible thing to go through! I'm so glad you took action, and are now accessing her port at home. I can't think of who a child could trust more, but her parents, and I sincerely hope that it continues to go well. :)
Oh little Lily, you are so sweet and cute and adorable and just one of my favorite little babies to read about. Someday we'll get to meet you and tickle you and see you perform!
We are so grateful that she is growing and progressing. I am so thankful that the new formula is working. Briana, I just don't know how in the world you could handle TWO sick kids. You and Eric are such wonderful examples to us!
Merry Christmas!
Ah, what a sweet thing!! She is just so darn cute! Not that Elena isn't, but, like you said...they are just different girls! Both precious in their own special way!
Briana, I truly admire your honesty about your feelings...how healthy is that!!?? I can relate in a very small way to how you are/were feeling...but what you & Eric are doing for/with those two precious little girls, is just amazing!
We love you guys so much...hope that all works out for Elena to get her wish in January (boy, those numbers are soooooo low!).
Have a very Merry Christmas and a good, healthy New Year!! HUGS!!
she is such a doll!! She always seemed to be such a happy and content thing--she must have the sweetest disposition!
That One Last Christmas video below had me in tears--such a sweet message.
we love lily. she is so sweet. i loved seeing her poke her little head out from behind the table when i stopped by last week. she is so cute. :) i'm so happy she's thriving. and that you all are, too. i loved reading your thoughts and about what a blessing lily is during this difficult time. i remember our feeling the same way about baby andrew when my dad was sick. babies bring so much joy!
ps- miss lily, i have got to see these steps!
and hooray that you got your room back! that is AWESOME!!
Penelope: Thanks for your thoughts about my feelings being a "survival instinct" - that makes sense. And it makes me feel 100 times better. :) It's just nice to have some idea for the reason as to why you feel so weird - it removes some guilt. :)
She is darling! and growing up so fast!! So fun that she has "come out of her shell" since the formula, so glad!
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