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!
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!
Comments
Take Care,
Stacey
Keisa
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
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 :)
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!
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
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 :)
soniasluvz.blogspot.com
Mandy and family
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
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
Tudo de bom pra vcs..
abracos
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