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Monday, November 29, 2010

Round 6 Has Begun!!!

This is Ella's look upon arriving back at the hospital today. I am amazed yet so thankful that she doesn't mind being here at all. I am sure that part of it is that she gets so much attention all the time.

To catch you all up on our last week's events, Ella has done fine with the G-tube. She was definitely a bit sore to the touch for a few days and I think the feeds bothered her some as her stomach would be stretched causing some pain. But she is doing great with it now and we have worked back up to 7 ounce feedings (the goal is 8 ounces). The biggest problem now is keeping her from pulling the feeding bag attachment out of the tube and spilling her milk all over the place. We tape it like crazy but she has become quite proficient with working the tape over these last few months of having lines all over her body. So if anyone has any suggestions for reducing the amount of mess, I would greatly appreciate it.

We were released from the hospital last Tuesday and were home for a total of 7 hours before Ella decided to get a fever. When you have a central line, a fever can mean there is an infection in your blood and therefore you MUST come in to the hospital to receive IV antibiotics. So, we came back in through the ER about midnight. Her fever at home was 101 and in the ER was 100.5. They gave her Tylenol and we never saw the fever again. Of course nothing turned up in the lines but we can't take any chances. Thankfully, they didn't keep us the full 48 hours and let us out around noon on Thanksgiving day. We only had 3 days at home but we accomplished alot during those days and had some good times. This round will be exactly the same as her last round. Seven days straight of chemo and then sit and wait. Please pray that this round will be much less eventful than the last round. I really hope we can be home for Christmas!!

This was my favorite Black Friday purchase!!

Our new way of feeding Ella. I still can't believe
that I have an IV pole in my house. We try to keep
Ella occupied by watching TV and let the bear sit on her feeding tube so
that maybe she won't try to disconnect it!!

Ella's new poncho made by my Aunt Judy.

We had some special visitors on Saturday. Melissa and Claire from Moos Crossing (and her husband) were visiting from Colorado so we planned a little get together at my house. Laura and Ashley (and family) from Dear Laura, Love Sissy also joined us. We had a wonderful time and I can't wait to see them all again. The girls were quite funny together. Once again, Ella was a bit of a brute, finding it humorous to push Claire over from the sitting position. But she also tried to love on her as you can see below. Unfortunately, I didn't get many good pictures as my battery was dying and most of them came out blurry. (If you go to Ashley's blog above, she has much better pics)
Ella and Claire getting a little TOO friendly!!

Ella is showing the girls how to play with diapers

It was actually quite cute as they were all passing them
around like they were playing hot potato!!

Ella and Laura...aren't they the sweetest little Puritan
girls you have ever seen??

Trying to get a picture of all three of them together was
kind of a joke...this was the best I got.


Ashley said...

We had so much fun and we can't wait to see you all again <3 *HUGS*

Zoey's mom said...

Love and prayers to you friend.Left a FB message.

Still so bummed I missed the get together,A ton of cuteness in one place!The girls and the diapers,just cracked me up!

Talk to you tomorrow sometime.

Patti said...

I'm so jealous!!! Can't wait to get together in April!!! I'm praying for speedy recovery the sweet and adorable Ella:)

stephanie said...

AWW, you meet so many bloggy friends! What a great visit!!

And round six!! let's go Ella!

Get in
Get out
Get home!!!!

Rachel said...

So glad that you were home for the weekend and that she had some fun with friends:)

The VW's said...

What cuties!!

Praying round 6 goes well and fast! Hugs!!!

Suzie said...

You have the most upbeat, positive, fun blog! I love coming here and reading about Ella's journey, although cancer is not a journey you would have chosen you find the best in things and cherish what you have.
Ella is a true beauty and so sweet you just want to squeeze the stuffing out of her!
The three girls together melted my heart today thank you for sharing!
You need stock in diapers!

Rochelle said...

So thankful that she is on round 6! Praying for a speedy round, no illnesses and that you are home for GOOD way before Christmas!!!

P.S. Alayna had tonsils, adenoids removed and ear tubes put in. She is doing well.

my family said...

the cutness gauge is off the charts :) I see who the "teacher" in the group is. oh how she has grown the past several months....baby to big girl too fast. Could you send your address so I can get some christmas cards out in the next few weeks? Hope everything continues to go smoothly {{hugs}}

Runningmama said...

Oh wow, I had no idea you would be starting round 6 so quickly, but at this rate, maybe you have a shot at being out by Christmas and totally done with all of this! Ella looks great! I hope this round is uneventful!

ANewKindOfPerfect said...

Denise, see if you can get some AMT Clamps to try!
I will see if I have any lying around the house and let you know. :)

Cammie Heflin said...

That is a room full of adorable!

Kelli said...

Sounds like so much fun!! :)

Christi Harrison said...

what a great post. i love the pictures. ella really looks like she is teaching the other girls about diapers and the puritan photo...adorable! i hope this round is easy and you are home for christmas. lots of love and prayers headed your way.

Lori said...

Even more prayers than usual coming your way. Praying this round goes smoothly and that you are home and enjoying the Christmas holiday with your family.
Love the pics of the girls...the Puritan girls one is a hoot! =)
Sending something to Miss Ella soon -- just got to get myself organized and to the post office! =)

Michelle said...

sending love, good luck, prayers to you all this round! Love the Pics...gosh she's grown since we saw you guys last...feels just like yesterday, yet the pics remind me it was almost a lifetime ago. Sending hugs and kisses!

Tina said...

Awww the girls with the diaper....what a laugh, seems like Ella has got the others hooked!!

O.k. round 6 here she comes, lets get it over and done with and put this behind us!! Yes Ella you are a fighter and you're going to do just great. Mommy stay strong just like you've done throughout this journey. Sending prayers of healing and much love always.

Melissa M said...

It was so, so wonderful to meet you all! I can't wait to come back for another visit.

I have been thinking of you and Ella and hope all is well with Round 6 so far!

Anonymous said...

I thread my son's under his pants...after taping it of course. :) Hope it works! Blessings!

Emily said...

Love what Stephanie said... So many fun visits for you! We're praying for you sweet girl!

Mama Mason-Mann said...

Love the diaper pictures! Love all the pictures, actually. The first one is great. She's got such a great happy face! Good luck with this next round. I hope it goes much smoother and that you're out by Christmas. Hugs and smooches from Chloe and her family!

Leah said...

I am very late in answering this! I'm currently sitting in a hotel room in Serbia with my new son! I'm a little behind on my blog reading. ;-)

About the gtube, put it under a onesie, then run it down her tummy and her pants so it comes out the leg of her pants. When she's in the high chair she she (hopefully) won't be able to get to it well enough to disconnect it.

Also, when she's having her feeds, if she is interested in putting stuff in her mouth, encourage that at the same time she's getting a feed. It is amazing how quickly some kids forget to associate putting stuff in their mouth with getting satisfied. With Angela we gave things that had flavor but I knew she couldn't/wouldn't bite off, like whole raw carrots, or popsicles. I know Ella isn't big on things in her mouth right now because of sores and stuff, but it's worth a shot if she's at all interested.

Hopefully the soreness is gone by now. The nerve endings in the skin were cut during surgery, so the stoma itself should not be sore. (just like if you have surgery you now have a numb area at the site of the incision...like a c-section scar)

Once she is used to feeds, you can do bolus feeds with a syringe. Some kids can tollerate getting their feed over the course of a few minutes, just like if they guzzled a cup of pediasure. My Angela could get a whole feed pushed in via syringe in about a minute! Every kid is different in how they tolerate feeds though.

Hugs, and hang in there!