Post # 2---Ellie's MD appt

I'm going to copy and paste most of what I wrote on Facebook so if you've already read that, bear with me. I really, really, really appreciate all of the prayers and phone calls from everyone. It means more to me than you all know!! One of the big issues with Ellie's SEDc is that it can cause the neck to be "loose" which is where we are with her right now. She is at an increased risk for having paralysis due to the nature of the loose vertebrae in the cervical area. With that said, she is on many restrictions physically (which is rather hard for a VERY active 4 yr old). The only way to fix this looseness is for her to have a cervical spinal fusion which is one of the most delicate surgeries and poses many risks. In order for the surgeons to find out the degree of increased flexibility and how much movement she has in her neck, she will have to undergo an MRI of her neck which is scheduled in a few wks. Dr. Lubicky seemed very concerned but thankfully, doesn't think she has any spinal cord damage at this point. She passed all of the neuro tests so he is confident things are OK so far. Thank God! I pray her path continues this way...but if not, we'll cross that bridge when we get there. She is a fighter and she gets it honest. God Love Her!!!

The next day after the appt, we headed to the Indianapolis Children's Museum...GREAT PLACE!! Ellie had a ball!! I am definitely going back this summer except taking Katie and Maddie, too (they were at their dad's all wk so they weren't able come). Ellie's favorite parts were the Carousel and the Dinosaur exhibit...yeah, you heard me right, the dinosaurs. Wow...talk about surprised!! She was completely mesmerized by the sounds, the fantastic lighting, the huge displays of the different dinos (I'm doing you all a favor here by not trying to spell the kinds we saw...b/c frankly, I don't even remember!) and the feeling that you were completely in the middle of the Land of the Lost (I loved that show and can't wait for the movie to come out--although I kept looking for the Sleestacks and never saw them). Anyway, it was a great way to end our short journey up north and take my mind off the inevitable.

As always, there is always something being fixed, built or worked on in Indy and the Children's Museum was no exception

For some reason, Ellie was fascinated with the sand...like she'd ever played in it before!

Ellie's blue boat she constructed herself. She was so proud of it. Ahoy, Mate!!!

Ellie's favorite place to be....on the Carousel!! She LOVES these things!!!!
Apparently, Ellie has a deep love for dinosaurs, which was a news flash for us!!
And the Princess FINALLY takes a break...and awaits for her Knight in Shining Armour! I don't think she'll be waiting long!
I think Ellie was terrified of this lego dragon...she has a nervous smile.
And away we go!!! Who knows the destination with Ellie in the drivers seat!
My Lil Hoosier!! (this is the name of the doghouse which didn't show up very well)
Waiting...and waiting...and waiting for the train to go by....unfortunately, it only went by one time and there was like thousands of them everywhere!


Melisa said...

I'll be waiting to hear how that MRI goes. So happy to hear no spinal cord damage. Prayers to you. Ellie is a fighter like you said.

Destini said...

What a great day at the Children's Museum! Ellie is such a beauty! Dinosaurs, huh, very interesting! We will be keeping you guys in our prayers over the next few week!

Mike said...

Isn't that place great?? We did an event there a few years ago and it was a blast to get to work in there! We'd take our breaks down in the Dinosaur room just for the fun of watching the seasons change... Of course, we were all lighting geeks and spent half the time talking about how we would have done it better, but it was still a load of fun. Was she able to crawl into any of the little cages and pop up in the middle of the exhibit? I thought that was a really neat design!

Kim said...

I am keeping you in my prayers for the MRI! it must be next to impossible to keep her restricted in her activities! She is just a complete beauty!

Melissa Swartley said...

We are keeping you all in our prayers for Ellie to get through this! I'm so glad to hear that there is no spinal cord damage! I know of another little guy who is now 10 years old, has had 4 spinal fusions and each time he emerges from them wonderfully! I'm sure Ellie will do just as well if she needs to go through it! Looks like she had a great time! Dinos are so facinating for kids! Sending you big hugs! :)

Greene Family said...

What a fun day at the Children's Museum! Ellie is so adorable in all of the pictures, and she does look so proud of her boat! I'm sure she'll have a line of Knight and Shining Armours!
We'll continue to pray for you guys over the next few weeks! That is great to hear that she doesn't have spinal cord damage!

Katie said...

What a cutie. I love your pictures! I will be praying for good results from her MRI. Let us know how it comes out.
In 2002 my Dad had a neck fusion surgery. He found out that he had a rare syndrome called klipilfile(spelling?) that caused the upper vertebrae of his neck to fuse in 2 different areas-in all involving 4 disks. They took bone from his hip and pig bone to sperate them. It was a worrisone and stressful time but he recovered fine and months later was back on the golf course.
~Love, Katie