It's been too long!

So much has changed since I last posted.
Celia is great! She has seems to be on a mental upswing, learning like crazy! She healed wonderfully from her spine surgery! The school district is supposed to be providing her with an iPad and working with her on it for communication.
Aimee graduated high school in Dec. Then turned 18 in May. She is working 2 jobs at this time.
Heather is still struggling to find her way in the world.
Jeff and I have separated. I am struggling with this, but will pull myself up by my boot straps as always!
I can't figure out how to put pics on here at the moment using this iPad so if your not on my facebook, you will have to join me there!!

As promised...

Celia's post op appt went great,,they were very happy with her progress and the correction they got!! Here are the xrays of before and after surgery!! I wish I could have figured out how to get my scanner going but for now these are just pics I took of the xrays on my cell!
                                                    Before surgery front view

After surgery front view

Before surgery side view

After surgery side view

AND we are off to Denver again..

It has been a month since Celia's surgery!! I can't believe it has been a month! We have been so blessed that she was dismissed after a week, we got to come home and finish recovery in the comforts of home, and that her recovery has gone so beautifully!!

This is going to be a short trip with only one appt!! So excited about that!! We will drive out on Tue. the 10th,,appt on Wed. the 11th and travel home on Thur. the 12th. I pray it goes that smoothly!!!

I am excited to see her back in xray! As soon as we get home I will get before and after pictures of her xrays scanned in and on here!!

Celia is so amazing!!

Alright, alright, so we all already knew Celia was amazing BUT since this surgery it has just reiterated to me just how amazing she is!!! She is doing so well!!! Feeds are back to normal,,she is almost off pain meds,,getting up and walking quite a bit(in fact we have to MAKE her sit down and hide her walker because she goes until she is shaking!!) and in general back to ruling the house!!

We are all soooooo amazed at how well the doc was able to correct her curve and hump!! She went from 4'4" to 4'7"!!! She looks all stretched out now!!! Her incision is looking so good and the bruising is all but gone.

My amazing baby girl!!!

We are HOME!!

She keeps going and going!!!

How sweet is that!?!?!?

 Daddy comforting Celia!!

Incision site looks beautiful!!

First time up to cruise in the wheelchair!

NEAT shower cap that has some special waterless shampoo in it,,the nurse gave her a wonderful head massage in the mean time!!

All pretty now!!!

ALL READY TO GO!!

Nana is so comforting!!!

Ahhhh finally kicking back at home!!!!

We were sprung from the hospital on Sun!! Celia did great on the 6+ hour drive home and only became uncomfortable the last 50 miles of the drive despite having all the pain meds I could give her!! We are settled back in at home now though and it feels so great!!!! Celia is doing well considering! We are still having to keep a close eye on the pee-pee and poo output and are not back up to regular feeds but that will all come with time!!

A very picture heavy post!!

So straight, even from the front!!!

Lauren(cousin) visiting Celia.

Aimee and Celia

Celia helping the RT bag in her breathing treatment!!

Woo hoo look at that straight back!!

Celia's wall of cards!!

Nana and Celia

Part of our beloved Ortho team(Surgeon Dr.Erickson in dark blue)

First time sitting up in the recliner.

Nana lovin Celia!!

Second time sitting up in the recliner!!

Sitting up BIG with Daddy!!!

Awe daddy and Celia!!

So much going on!

Today we moved to the floor which is great news but as always with good news there is bad news!

This morning she pulled out her central line OUCH but it didn't seem to bother her however it creates all kinds of complications for us as we no longer have ANY IV access!  3 attempts were made to get an IV in but every one blew right away. We are giving that a rest for now as we are on all g-tube meds anyway and can still get a blood draw pretty easliy.

Her stomach is horribly distended and hard as a rock so we have paused formula, started Pedialite,  venting with a Ferrell bag to prevent any more air from heading south and have started some strong enemas to try to clear out her intestines!!

Her lungs are not doing the best,,growing several things so we started Augmentin as it is broad until we know specifics and can target the ickies specifically. Talking about starting back on CPAP and being more aggressive with breathing treatments.

We had a great day in regards to PT!! Got her up and walked with her walker(and lots of support) about 6 feet, then sat for a few minutes then walked about 3 feet then sat in the recliner for a few minutes before the 3 feet back to bed!!! Very proud of my punky girl that despite the pain she charges on!!!!

On the up swing

The night went fairly well with 2 long stretches of good sleep and only a couple of waking up going crazy episodes.

  Today started a little rough,,coming off sedation and the heavy pain killers,,then spiking a fever of 102.  Motrin seems to have done the job on the fever.

I think she has managed incredibly well today being off the big gun pain killers, some pain and discomfort but not unmanageable!!

We got her into a sitting position with her legs dangling off the bed mid morning, still needing full support but I am sure that a lot of that is due to the meds. She patted her pillow to lay back down after a few seconds. Tonight we just sat the head of her bed up fairly upright and she stayed sitting up for a couple of hours before wanting to lay back down!!

She is down to only a central line. She started with a arterial line in her left hand, IV in her right hand and a central line in her chest. Yesterday she pulled out the arterial line. They replaced it with an IV,,guess what,,,she pulled that out today!! The nurse removed the other IV today. Baby steps,,baby steps.

She is back on feeds. She is up to 60ML an hour and doing well with it. Once we up to the floor we will gradually increase then work on getting back to her bolus feed schedule.