Friday, October 17, 2008

Update on Bela

Bela is doing great!! I feel so much weight lifted each day that she continues to get better. You can just feel the difference in the atmosphere around our house...it is so much different lately than it has been for the last 7 and a half months. While there are things that are still very hard, things are much better. I of course will always worry about Bela as her future is still very unsure, but I don't feel that constant, sick to my stomach worry that has been my companion for the past year or so since we found out about her delicate condition. It was actually almost exactly a year ago from right now that we found out. It has been a long road, seems like FOREVER ago, but it is SO wonderful to be where we are at. She is just really coming alive latley and is so interested in checking everything around her out.. She is laughing now but Benson is usually the only one that can get her to laugh. It is a beautiful sound to hear... I love to see her happy, I longed for it...

Bela's hair right out of the bath is SO curly!! She definaltey got the Woffinden curl. For those of you who don't know my family, every one of them except me has tight ringlet curls. I always wondered if one of my kids would get it, and I think Bela might have it..

She is still coming along really slowly with eating... SHe has no interest in anything whatsoever in her mouth. SHe forgot what her mouth is for... I keep trying to tell her she'd be so much happier without that tube down her throat, but we've still got a long road ahead of us until she is eating enough orally to get rid of it. We are going to discuss the possiblity of a G-tube tomorrow at our appointment... I have mixed feelings about it. While I am extremely tired of reinserting her NG tube down her throat and the constant rashy cheeks, I would love to be able to avoid a G-tube which would require another surgery. She will have another swallow study done in a couple of weeks and then we'll be able to really start working on eating with a speech therapist at home. I really hope she can remember how to eat and make some good progress there so she dosn't have to get one...




These two pictures are kinda funny but I couldn't really get a great shot of her new thing: standing!! She loves to be standing but it is so funny because her legs are the smallest little bird legs... She'll be fussy laying down and all I have to do is lift her up to a standing position and she's so happy.


We have an appointment tomorrow and it will be a long one, complete with an echo and lab work. Hopefully we'll get all good news. I'll post her weight when I get it..I'm hoping for some good growth. Last apt. she had lost weight, but she has done much better keeping her food down the last three weeks.
Other than that, we are just enjoying being together. Bela is such a joy to have at home, we love her more than we can say. Thank you so much to everyone who conitinues to pray for her and follow her story. We are so grateful for your love and support.


These sweet eyes of hers really tell a story.. :) We love you Bela girl!

31 comments:

Doreen said...

What a cutie. Glad to hear she's doing so well. :o)

Andrea said...

She is so beautiful! I'm so glad that she is doing so well. Good luck with her appointment. Hope it is all good news!

Abby said...

She is such a beautiful little girl! We are so glad she is doing well. Amaya and Jaci still pray for her everyday, it's so cute! I think it would be fun for them to meet the little baby girl they have been praying for one of these days! :)

Camille Gould said...

She is so beautiful! I love that curly hair, too cute! I'm so glad that she's getting better and better.

Matt and Stacey said...

She looks SO big and strong. It's amazing! I tried to call you yesterday, but couldn't seem to get through! Anyway, I am so glad she's doing well.
Take Care,
Stacey

JJ,Kristy,Braylon and Jax said...

I am so happy to hear that Bela is doing so great Avery. What a little blessing she is. It's so wonderful to see what a happy little girl she is. She is in our prayers daily.

The Ridgway Family said...

Avery, I know exactly what you mean when you say this has been a very difficult year. I think of you daily and little Bela looks SOOOO good. It looks like she's filled out so much. I am so very happy for you!

Keisa

Matt and Stacey said...

Avery,
Sorry we missed you today! It was just one of those days and we needed to get out. It would have been great to see you and I know Drew would love to play with Benson sometime! I can't wait to hear how your appointment went. Beth said that Bela's getting big!
Take Care,
Stacey

lundgrenville said...

She gets cuter by the minute! Its so good to hear of her progress. She truly is a little Angel...Obviously has an important purpose in this life!
It warms my heart when you mentioned that she loves when Benson makes her laugh! So cute!
Our prayers remain with you.
Give that little kiddo a squeeze for me....Oh, and Benson one too :)

Jennifer said...

The best part of Sunday for me was to hear my name and look up and see you and Bela together for the first time in R.S. What a wonderful sight!!! You also brought tears to my eyes as I watched you sing "Count Your Blessings" and hold Bela...What an overwhelming message in the words of that hymn as you held your little miracle girl. My eyes were filled with joyous tears as I watched your tears stream down your beautiful face. You and Bela have taught me so much!

johansen viking said...

avery, I love to read your blog we want you to knowan that our family prays for bela and your family often. thanks for keeping everyone posted. your story is miraculous and wonderful and powerful and inspiring. your family is so strong. thank you for the faith you show to us all!

Much LOVE, marni "manley" johansen

PS...about the woffinden hair...about 4 years ago I was attending a ward in Henderson with my husbands mom. We sat in the way back. I was looking around and saw this head of hair. I knew it had to be ERIN! I wasn't even looking for her. I bolted up there after the meeting...sure enough..the woffinden hair showed me the way!

Lily's Mama! said...

I am so happy to read an update and a wonderful one at that. She is looking SO good. I found your number and I have tried to call you a few times but never got you or your voicemail. Maybe I don't have the right number.

I hope she starts taking bottles by mouth here soon. We went through a few different types of bottles until Lily found one that she liked. I hope that is all that is holding sweet Bela back.

I would love to hear from you and maybe we could work out a day to get the girls together for their first play date.

Sending you heart hugs
Jenna and Lilyana

Simmons Family: said...

Oh Bela looks fantastic! It looks like the NG is helping her put on weight too. I know what you mean about the LONG year.

The eating will come along. Owen eats EVERYTHING in sight, but his motor skills are underdeveloped. It's frustrating because he WANTS food, but can't manuever it too well once it's in there. We're working with feeding therapy right now... let me know if you find someone great?! We have gone back and forth on the GTUBE, but it's another surgery and Owen's reserves are just too low right now.

I LOVE the curls! We live really close to you so let totally get the kiddos together. They can roll around together and pull out eachother NG's.

Andrea :)

emcghee said...

Oh my Gosh Ave, I didn't know about the curly hair! WOW! I love it--I hope it stays. Some super cute pictures of her, looks happier.

Sonia said...

Avery, you have a beautiful little family and Bela looks like an angel sent from Heavenly Father. She is beautiful and blessed to have you and Tanner as her parents. You are a solid woman of faith, and I admire you more than words could depict. please let me know if you ever need anything. the Lord will be your constant companion and compass..love you all. sonia
soniasluvz.blogspot.com

Lisa W said...

What a wonderful post! I can feel your joy and gratitude through your words. It was so good to see all four Milnes at church on Sunday. I can't imagine how good it felt to sit there with your whole family together. Even though Bella was a little fussy in RS, I know that no one minded a bit. We could have spent the whole hour just looking at her and listening to her!

Auburn said...

SO SO SO Cute. Great to see her at church last week. As I listened to her little whimpers in RS I suddenly felt grateful that she was there to fuss! What a blessing ;o) Those pics are all so cute. I love the one where she has a double chin b/c it looks so GOOD to see some rolls on her!!

Matt and Jennae Porter said...

I LOVE that last picture of her. And I LOVE her hair. She is such a beautiful baby. How is she standing already?? Crazy. She still seems so young to me, not sure why. Bela should come stay with us for a few weeks- we here at the Porter household are REALLY good at eating. Me especially! Bela would catch on in no time. =) We love you all and are so thrilled that prayers are being answered!!

Erin said...

We just love that Bela girl!!! She really is starting to fill out and get the cutest personality...like I said the other day I cannot wait to come again and hold her and maybe not have her fuss for mama (at least for a couple minutes). It was great chatting and I sure hope the doc appt went well...let us know. We look so forward seeing you more in church with the little princess as it is a reminder of what the gospel and miracles are all about. You have come such a long way and we are so grateful we have been able to be a small part of your journey. Keep up the good work Miss Bela!!!

Wendy said...

Hi Avery, I am so happy to hear that she is doing so well. I think about you guys often and continue to pray for your family. Sorry I've been slow to respond lately. I'll have to call you sometime to chat and catch up on everything. You look great and Bela looks so healthy. Yea!!!!!!!

Evie's Story said...

Absolutely darling pictures. Love the one of her in pink - what a precious outfit! We pray for baby Bela regularly and are thankful for the specific request. We will be praying that a Gtube will not be necessary and that little missy figures out the eating thing. She's come so far. What a little miracle. We love her too!
Mandy and family

Lisa said...

Avery,
I keep coming back to your blog to see how sweet Bela is doing. I am glad things keep getting better. You are such a good example of strength and faith for all of us.
Love,
Lisa

Courtney N said...

Hey Avery,

I ran into your dad at the airport a while ago and he told me what was going on with you and your family. I found your blog this morning and Im glad to hear that things are going better. You have a beautiful family and I hope you don't mind me keeping updated on your family through blogging.

--Courtney Neilson

The Zemp Family said...

Wow! she looks fantastic! I know there is much more to come, but I am so happy for everybody! I hope you are getting some more sleep.

Carmen said...

Ela esta tao bonitinha, que alegria saber que ela esta se recuperando pouco a pouco...
Tudo de bom pra vcs..
abracos

angie said...

yay! I'm so happy that I got to see her recently! I want to come back! The pictures just don't do little bels justice! But I think they'll hold me over until Thanksgiving :)

Preston and Rachel said...

Hi Avery, you will remember me as sister Richards. I found your blog by chance several months ago. Holly Gibb used to live in my ward here in Wisconsin, I was looking at her blog, and having an Avery of my own, I couldn't help but look at the Avery that she had on her blog list. I was so suprised when it was you, the only other Avery that I know. I have been reading your blog ever since then, and I always mean to leave a comment but something (or three little somethings) always pull me away from the computer before I get a chance. You are so amazing! Our third little one has had health problems all along, nothing to the extent of your little Bella, but she has spent some time in the hospital. Early in my pregnancy we were told that she may only live for a few days. She is now 15 months old mostly healthy and loves to cause trouble and make messes. Anyway I just wanted you to know that I am reading your blog (I even put a link to your blog from ours feel free to check it out in your "free" time prestonandrachel.blogspot.com) and I have appreciated your amazing attitude and reading about your sweet baby. Her name is very fitting, she is beautiful!

Alvin & Jessica Pease said...

Hi Avery,
my name is Jessica Pease and a friend of mine (chantel reidhead) gave me your blog to check out. we just found out our baby has a heart defect & i would love to ask you lots of questions. we are thinking about going to St Joes & i was just wondering how you liked it. I have only meet a lady named Beth from there and two other people and so far so good... neway we have a blog but its private so if you want an invite send me your email to jessica10e@hotmail.com or you can call me at 480-292-4808. im sure you can give me lots of good advice for the future! especially since i have no idea what to expect & am in complete fear. anyway i hope to hear from you soon!
-Jessie

Heidi Ann said...

Hey Avery. I had an appointment with Dr. Ponkey and she asked about you. She wanted me to tell you Hi and that she still thinks about you. Isn't she the best!!!

Moranda Fielding said...

The Woff curls made me get real emotional Gurty.....I love it. I can't wait til she has a fro.

Victoria said...

Hooray for Bela! Yours is the only blog I check every time... you guys have an amazing family. Heavenly Father wouldn't have sent Bela to anyone else. The McDaniel family loves you...