Wednesday, December 2, 2009

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!

20 comments:

Ali said...

Loved the update...and really really loved the pictures! They are perfect!

Amanda said...

Hey Avery,

It's Amanda (Sister Fish).

Cute pictures!

Hasn't your mom told you about essential oils yet? I know Bela has different needs than most kids, which would make it harder to try to make those decisions for her, but I feel the same way you do about shots.

I'm sure vaccines and RSV shots are a little different, but everyone thinks I'm crazy for not having my kids get the flu or Swine flu shot. But I've been using doTERRA essential oils on them nearly everyday during this crazy sick season, and they've hardly gotten sick. They may get a runny nose here and there, but it never lasts longer than a day. I love them. My kids love them. They ask me to put oils on their feet all the time. It's a lot better than a shot in the leg.

Let me know if you want me to send you some info about them. I gave your mom some info and a few samples. I haven't heard back from her. I'm assuming she keeps pretty busy down there.

I'm glad things seem to be going good for you guys. Take care!

Courtney N said...

You have a gorgeous family!!

Lindsay Brummer said...

Just wonderful. These photos really capture your family. Your spirit just shines through in them. Seeing you guys hugging and laughing... it's just perfect, Avery. You guys are so neat.

La said...

wonderful pictures, wonderful news (basically no news!!)

we miss you guys so much! but if keeping bels at home is keeping her healthy then it is worth it!

Matt and Jennae Porter said...

ADORABLE family pictures!!!

Branton Family said...

Great pictures! I just went in for my ultrasound with Dr. Ponkey. She says hello, I told her you all were doing great. :)

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likeschocolate said...

What great photos! She has gotten so big and her hair is so long. She is precious! Merry Christmas!

The McBrides said...

It's so good to see your family doing so well. You remind me of me everytime I read your blog. Ellery and Bela have some similarities and your insight about it is identical to how I feel as a heart mom. Good and Bad, but I agree with the RSV shots. You feel guilty if you don't take her in, at least I do. Love your pics as well!

The Joslyn Family said...

It was so great to see an update! Cutest pictures of your family! Bella and Benson are so cute! You guys look great!

Sally said...

The pics turned out so cute! Glad you got to snag them from her for the blog.

Andrea said...

Such cute pictures, Avery! Glad things are going well. My sister-in-law had a little boy last month with heart problems and had to have open heart surgery when he was just a few days old. I thought a lot about you and all that you have been through with Bela. All I can say is that you heart moms really amaze me!!
Have a wonderful Christmas and tell your family hello.

Evie's Story said...

Absolutely gorgeous family pictures with you and your little miracle girl! Precious!

Joe and Megan Karlsven said...

Those pictures are great. You guys look so good. I love your shirt by the way. She is getting so big. i am glad that things are going better. Hope you have a great Christmas.

Dallas and Krista said...

Cutest pics Aves. I miss you.

Rich and Miriam said...

LOVE your pictures! Glad to hear things are going well. Hope you enjoy the holidays!

Courtney said...

Love your family pictures! I am adding you to my bloglist, even if we aren't in your ward anymore! It was fun while it lasted!

Anonymous said...

Your blog keeps getting better and better! Your older articles are not as good as newer ones you have a lot more creativity and originality now keep it up!

Anonymous said...

Tanner and Avery,
My grandson is 2 1/2 and has HLHS (has also been through the first 2 surgeries) and was just admitted to the hospital Monday night with RSV. My daughter and son-in-law had him get the monthly RSV shots his first winter but quit the next winter (praise God he didn't get it last winter). Don't know how bad of a case he has yet but please be assured you are doing the right thing for Bela to continue the shots till she is a little older. And please pray for Ethan (Miles), our grandson.