Wednesday, April 15, 2009

sweetie gwirl

As Benson so lovingly calls his sister..


April has been a wonderful month. My birthday was at the end of March and although it began with a trip to the Urgent Care at 2 a.m., it was so much better than last year. Last year I was worried sick about my sweet little girl and her life. I didn't know if my days were numbered with her, what her future held.. I was stressed beyond belief having just brought her home, but realizing really quick that something was still very not right with her, and she was admitted again a few days later. It was such a crazy time, and I thought about that a lot on my birthday. It was the best gift for me to see how far she's come, and to have the overall feeling of the day be so different. The urgent care visit after she screamed for 3 hours turned out to just be an ear infection. Thank goodness. It's amazing to just get that news, something so normal as an ear infection. We'll take it!

This month she learned how to pull up on everything.. everytime I go into her room to get her in the morning when she wakes up or after her nap she's standing up, waiting for me. It's so cute!! She is scooching across the room, cruising along the furniture, and wants to walk (with my help) constantly. She's so miniature it's almost funny to see..




We havn't had a cardiology apt. in about a month, but last check up went well. Her endocrinology apt. was monday and he was very pleased with her 16 lb 10 ounce little frame. At least she's still following her own curve, however off the charts that may be.




She is eating so much better lately.. It's still not by any means her favorite thing to do, but she is taking in orally more and more every week. She eats anywhere from 1-4 baby foods a day, depending on the day, and loves to munch on little finger foods. Her problem is quantity..she will take a few bites of everything and anything, but just dosn't want to eat a whole lot of anything. So I let her eat what she wants, then we just put the rest right into her tummy. SOmetimes it's almost the whole feed, and sometimes it's just a tiny bit of food. She drinks about 5-8 ounces a day, so we're still having to give her most of her liquid through the tube. It's great progress tho, it's been amazing to see her improve so quickly. I always knew that darn tube was the problem. I can clearly see now that it hurt her to swallow. I am SO glad we went ahead with the mickey button. It has changed EVERYTHING around here. Not only is Bela so much happier, but there is a different feeling in our home.. no more stress or crying over eating or reinserting it. I knew things would be different, but I didn't know how much better it would really be.




Some pics from Easter Sunday.. She only lasted the first hour as usual, but at least we got to put her in her dress!




Bela and her buddy Mark at the St. Joe's 'heart picnic' in pheonix..



Happy Spring!

21 comments:

The INCREDIBLE Pettit's said...

She looks really good, I'm glad the eating is going so well. I love her Easter dress!
HEART HUGS

Sally said...

Oh she is so darling! The Easter pictures show how much hair she is getting too! Love those kids!

TC Jolley said...

I love hearing all the great Bella news. Keep up the good work Bella, and we'll see you at the park :)

Evie's Story said...

LOVE the picture of Benson and Bella together! Such a precious bond! She looks so healthy and happy! Blessings!!

La said...

I love every single one of these pictures.
Please tell me you are still coming to Cayleen's wedding so I can hold Bels. And then we can go to the beach and just sit. It will be wonderful.
PS: I was in TC Jolley's younger sister Millie's ward in Kansas. Small small mormon world.

Victoria said...

YAY for Bela! And Benson...and all of you. So sweet. You deserve these awesome, happy days!

The Joslyn Family said...

Bela looks so great! She and Benson were so darling on Easter. I'm glad things are going better for all of you. Happy (late) Birthday!

Brittany & Barry said...

She is SUCH a cutie! I'm so glad to hear things are going well for you all!

lundgrenville said...

Oh Avery-
That post just made my heart smile. Bela is such a beautiful darling. She is so happy and sweet in those pictures. What an amazing journey filled with miracles. Im grateful to be a part of it...and truthfully, she is a constant reminder of how the Lord takes care of His children.
Hugs-

Matt and Stacey said...

She looks amazing! Her and Addie will have to get together soon and play...tho Addie has a bunch of catching up to do! :)

Stu and Angie Milne said...

love the pictures! she is so adorable! i love how sweet bens is to her, he is the best brother!

Marshall, Nany and Max said...

Ohh she looked so adorable on her Easter dress! She seems SOOOO much happier without the tube and what a relief for you too. We love seeing the updates on Bela and your pretty family!

Take Care

- Nany Manley -

Andrea said...

Glad things are going well. Love the pictures! You have two very cute kids! And Happy (late) Birthday to you, Avery!

Heidi Ann said...

She is such a cutie. I loved the feeling of this post, happiness, relief, and upbeat! SO glad she's doing well!

The Silly Nilly Family said...

Beautiful

emcghee said...

She looks great! She's doing well which is wonderful.

Likes Chocolate said...

She looks so fantastic without the tubes in her nose. Yahoo! She is a keeper!

Staci said...

She looks so great. We're so happy she is doing well.

Matt and Jennae Porter said...

Ok I know my comment should be about Bela here, but Benson!! Wow, he is getting SO big and SO handsome! What a little stud.

Lindsay Dean said...

Oh Avery, she looks fantastic! You make me see the "good" in a g-tube if Lindsay needs it eventually. Bela's little cheekys healed up nicely! The picture of Bela and her big brother kissing her is just precious! And LOVE the owls in her room! Too cute for words!
Love to you~
Suzie

friea said...

You have an adorable little girl, and she is so lucky to have a mama who adores her and an awesome big brother and so many people who love her. Linked over from Meanest Mom, and started crying when I read your post about some of the rough nights. Our little girl gets asthma when she has a cold and has breathing issues, so I've spent a few long (to me) nights here. Can't imagine some of the nights you've had. Sending you a huge virtual hug, and sending your little sweetheart a virtual raspberry to make her giggle.