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Saturday, March 7, 2009

Ella's new accessory



Ella got her new head gear this past week. Her band came in on Wednesday so we had her first fitting and it fit great so we are good to go. She will wear the band 23 hours a day for probably the next 2 months at least. That is usually the average time frame but it depends on how well the head responds etc. as far as if our time frame will be longer or shorter than that. 23 hours a day, sheesh. Poor girl! I'm just saying that is going to be one fuuunky smelling head. It may be funky smelling but it will hopefully be beautifully round after all of this. It better be. :) So far Ella has done great with it. It does not seem to bother her too much which is good. Every now and then she will pull on it but other than that she is a-ok.

About two weeks ago we went to have the casting done for the band. Now days they have this big high-tech 3-D scanner that they use to take pictures of the head in order to make the mold for the band and the appointment will take maybe an hour. Sounds easy enough right? Sure, for the majority of people but not for the Carders. Oooh nooo. Do you remember how I mentioned that we like to take the hard road for everything so I now use the "go in with low expectations and you will be pleasantly surprised" motto? Yeah, well my expectations were low as far as thinking the scanner would do the job and I was right on this one. Of course Ella was moving too much and they couldn't get good pictures so they had to cast her head with plaster to make the mold. Very messy! Several years ago this is the only way they used to do it but now they hardly ever do it this way because of the fancy-shmancy scanner they now have. Not for us though, we got to go old-school. Thanks Ella!

So instead of our appointment only being an hour, we were there for 3 hours. Real cool. And did I mention it is in Dallas? Yep, another perk. So we will be driving to Dallas once a week for the next 6-8 weeks to have her band checked, measurements done, etc. I normally despise driving to Dallas for things (sorry Big-D friends, just being honest!)especially with how hard it is with Ella to go anywhere but there are some positives. One really good thing about where it is in Dallas is that the clinic is right by my sweet friend Kimberly's house and she is letting us use her house when I need to feed Ella. It is such a blessing. This past week I just loaded up the car with the feeding tube, bouncy seat, videos, etc. and we just moved in with Kimberly for part of the afternoon when I had to feed Ella and it worked great. Such a huge blessing to have a place to go to feed since it is still a challenge for us. Thank you Kimberly!! It was SO fun getting to spend time with you this past week. We love you so much!

Here are some pictures of our journey so far with the cranial band.

Putting the plaster on

The little mummy. I feel like the song "The Monster Mash" should be playing in the background for this picture. I can just hear it, "The-monster-mash, it was the mooonnster mash, the-monster-mash, it was a graveyard smash, the-monster-mash, ah-wooo...ah-wooo." Ella did so good through all of this, hardly a peep until the very end. She is so sweet!

Messy girl!

All clean after her bath

First time to wear the band

BORING! Let's get some decor on this bad boy mom. Yeah, I'm sure that is exactly what she is thinking. More like let's get this thing off please.

TA-DAAAHH! What up? Nice bling girlfriend!

More to come. Ella turned 6 months last week but last week was crazy so I didn't have a chance to update on that so next post I will. Stay tuned!

23 comments:

rm.holland said...

Amy,

I know you will be so happy when you will only have to blog about common everyday events in your life. But we do enjoy hearing and praying for Ella and the Carder family!! This was on Beth Moore's blog today and very worthy and applicable to y'all:

From the March 7 entry in Streams in the Desert by L.B. Cowman:

"There is no way to learn of faith except through trials. They are God's school of faith, and it is much better for us to learn to trust Him than to live a life of enjoyment. And once the lesson of faith has been learned, it is an everlasting possession and an eternal fortune gained. Yet without trust in God, even great riches will leave us in poverty."

love and blessings,

Marilyn

Jodi said...

Yay for the bling! It looks fab! :) Sorry you guys had to go the three hour route... yikes. But at least that way you got the Monster Mash memory! Man, never a dull moment with you guys, bless your hearts! But thank you for letting us in on the latest with little precious Ella, and thank you for new specific prayers. Less than 2 months, I say! :) Love y'all!!

PS. Coming to FtW next week... I'll call you, but I would LOVE to see you!

Jennifer said...

Can't get over how beautiful she is, Amy! She has one of the prettiest little baby faces I've ever seen! Loving the bling :)

Jen said...

Wow! I'm truly impressed with the decor on the band! I thought I had done well with stickers on Grace's but you've blown that out of the water! I simply must have details on that! I still have Grace's helmet (what they called it in Minneapolis) and simply adore it.

Ella is so precious. Someday I'll get my hands on her. :) LY!

Kendra said...

I love the band - she looks great! And you WILL love that perfectly round little head when it's all done. I've heard how stinky the little head can get by the end of the time to wear it . . good thing it won't be in the complete heat of the year at least when sweat would be more . . plentiful??

I have to say, though, that for a baby that had to go "old school" (and the scanner is actually a fairly new thing, I think), she did fabulous. I've heard lots of horror stories of screaming babies who couldn't calm down the entire time. At least that expectation was surpassed, yes? he!

You are so precious, Amy - I love your honesty, your candor, and the humor you choose to infuse into difficult life circumstances. Thank you for sharing this time in your life with us "blog readers" - your family is very loved! Blessings -

Brooks Inc. said...

Amy-

Ella is one of the most beautiful babies I have laid eyes on...She is precious!

Thanks for the updates...we love you Carders so much!

BJB

Jamie Ridgell said...

Definitely the cutest band I've ever seen! I can't believe she didn't make a peep while being mummified. What a sweet baby. Hang in there Ames. Love you!

oleyfriends said...

Hello!

I found your blog and wondered if you had heard of the Oley Foundation yet.

We offer free information and peer support for families like yours with a member on home tube or IV feeding. Check out our website at www.oley.org.

In particular you might be interested in the

• Tube Feeding Tips page
http://www.oley.org/tubetalks.html

• Meet Patients Section (try all three links)
http://www.oley.org/volunteers.html
http://www.oley.org/call.html
http://www.oley.org/forum.htm

• Oley's annual conference -- where you can learn a lot about tube and IV feeding and meet other families facing similar challenges. Preliminary details are posted now, but keep checking for updates at http://www.oley.org/2009_Annual_Conference.html
There are travel scholarships for first time attendees.

If you have any questions or would like to be introduced to another family, feel free to contact me.

Warm regards,
Roslyn Dahl
Oley Foundation Staff Member
dahlr@mail.amc.edu
(800) 776-OLEY

DCVol said...

Oh my precious....that girl is stunningly beautiful. The casting looked like torture, but she is so resilient and is just SO CUTE. What a blessing that Kimberly is so close to the doc. I cannot believe that Ella is 6 months already....she is SO amazing and so are her parents. Love you guys~ Kelly

Bogle said...

Ok you could not have a more beautiful baby sporting that helmet. She makes it look SO fabulous!!! What a trooper that little munchkin....and her parents too.

Nancy Giurlanda said...

Is she not the most precious baby! Ella is so beautiful and you did an awesome job on her headgear mom....look how happy she looks !!
What a babydoll she is. I am thinking about you and I love you all.

Sweets said...

Wear your gorgeous band proudly, our sweet Ella! God outdid Himself with your beauty! We're with you, Ella, with you all the way!

Summer and Jason said...

She looks so adorable with her stylish head brace! Think about you guys often and would love to see you soon.

Mere Ware said...

Soooooo cute!!! I will bring the stencil book over anytime to add that extra "something"!!!

jaymie said...

we were just in there last week! Too bad we weren't there at hte same time. You would've known it if we were. Kanyon was having a coniption fit while they...get this....TOOK HIS PICTURES! I mean seriously...he was a basketcase. Not sure if we're gonna get the band (he's probably too old) but we went for the consult. If we do...i'm feeling a plaster mold mummy man. oh great.

Anonymous said...

What a beautiful child of God sweet Ella is and what a blessing your Blog is to so many. We pray for your family regularly and know God is smiling as He watches how tenderly and sweetly you minister to this precious one of HIS. To God be the Glory! We Love You! Mike & Gayle Biggers

Monica said...

Little Ella looks adorable in her head gear!! She really is such a cute cute baby. Your plaster pictures just don't seem right!! Poor girl. She has such a good temperament to allow all that craziness!!

Amanda said...

Ella is so precious and I love the bling you added to her new accessory. We are always praying for you guys and love watching what the Lord is doing in your lives! BTW--your last post was hilarious. Eva eating boogers and paper towels is fab. Her and Sydney would be great friends. :)

Kristinsgirls said...

I love the bling on the headband. Is it vinyl stickers? I love reading your blog! You are such a comedian through your life struggles. I can't believe how calm Ella was through all of that. I think I would have been freakin' out! :)

Chesley said...

Love the helmet! As Kimora Lee Sims would say she has "Fabulosity".
And I am calling dibs on Ella to be my daughter-in-law some day. She is just beautiful! You could give her a green mohawk and she would still be beautiful!
I just want to snack on her!

LYN said...

That is one cute hat!!!
Our prayers are answered every day. Love, Ron and Lyn

Leilanni said...

I just love reading your posts Amy! You are such a gifted writer . . . ever thought about writing a book?? Um, not that you have a plethora of free time at the moment but I think you would be fabulous at it :-)

Leah said...

Hi,
Just wanted to say, I feel you with the band or "helmet" as we called it when my daughter had hers, 13 years ago. We were truly one of the first ever patients, so she had to do the casting ... twice! She was so young when she got it that she quickly outgrew it. Anyway, I just wanted to tell you the time passes really quickly and they do work. Take Care!