Thursday, July 28, 2011

nice legs!

Hi Friends!
People often ask me what the clinical trial is doing for Evie's bones. We had some x-rays done at Evie's orthopedic appointment yesterday so I thought I would show you for yourselves! I requested a disc of Evie's studies that have been done, I'm sure you will notice the difference:

x-ray of Evie's right leg, taken 9/20/2009 at 1 day old.

bone is undermineralized, short, bowed, and "disorganized" as her doc says.

x-ray of Evie's right leg, taken 7/27/2011 at 22 months of age.
bones are still undermineralized, yet there is lengthening, straightening, new bone forming, and organization into "normal"-ish, functioning leg bones!

can I get an AMEN!

Her doctor remarked that these two x-rays don't even look like they are from the same child! She has had such tremendous improvement in the past 22 months.

For those of you who are interested, in the top photo, the ends of Evie's bones are there, you just can't see them because of how undermineralized they are. They are basically cartilage that hasn't turned to bone yet. The lines in the more recent x-ray are stress points, or possibly micro-fractures from when she was still in utero or were caused at birth. When she gets more mobile these will be the possible breaking points, although her mom seems to think she will surprise everyone and stay in tact (: You can see the woman's hand in the more recent photo, this is what a more normally mineralized bone would look like, you can see Evie's are more gray, showing the undermineralization.

Love you friends! Thank you for your wonderful comments on Evie's walking video, she is practicing every day and gets so excited to show off her new skills (: She walked around a little when her friends were over today, it was so much fun to see her eye-level with kids her age.

Tuesday, July 26, 2011

... and TODAY!

but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

Isaiah 40:31

Thank you Miss Susan for the new walker!

I can't describe the feeling of watching Evie walk today. Tears of joy, friends! Tears of joy!


go Evie!

Thursday, July 21, 2011

step step!

Hey Friends!
What a HOT summer week! I can't even believe the heat index here in Omaha... over 100 for the past few days. That has given us a lot of time to spend in the pool with friends or nana and papa, so it's been good (:
In regards to the title of this post... Evie is STARTING... very very slowly, to cruise furniture! We have to (1) get her to stand without fussing (2) entice her with something amazing like a brownie or juice box, and (3) help teach her how to shift her weight to a single foot so the other is free to move. The mechanics of taking steps are so much different than you would imagine, we are SO blessed to have such an amazing PT who works with Evie and I so I can learn how to practice with her. Miss Susan is the best!
We also found Evie some shoes at Target that fit right over her braces. We went to a more expensive childrens shoe store but would have had to buy shoes that were 2 sizes too big, but while I was at target one day I saw some sandals (that happened to be on clearance for $6!) that fit perfect! She needs shoes over her braces to give her some traction and stability.
We are expecting a walker sometime in the near future to help Evie balance her weight on her sides instead of in front of her. She panics when she is holding onto something and it moves, so we are hoping to try something a little different. We got her a toy walker that is actually small enough for her to stand, but she isn't loving it.
Brian took a few more photos this week, I can't believe how big our little miracle girl is getting, and that it was two short years ago I was gearing up for her birth. Praise Praise Praise our Heavenly Father for his gracious provision for Evie's life and his tender love to John Lyla and I as we walked this road with her. Pretty soon she's going to be walking herself!
I am dying to get video of her talking a couple of steps but I'm usually the one moving her hips and cheering her on, so hopefully I'll get one soon (:
Love you friends!
photos by Brian Lehmann
look at this BIG girl!
there's that missing tooth (:

Tuesday, July 12, 2011

back in town...

Hi Friends!

We are back after an adventure filled long weekend in Colorado. I thought about blogging last week to inform you of why it was taking me so long to get back to you about Evie's ABR, but I figured it wasn't the best idea to put your vacation schedule on a public website (:

Evie's ABR went great. She did well beforehand in the pre-op area, did better than I did when the nurses took her out, and did okay waking up. She was really crabby when they brought her back, but she had just been sedated and tested on by a bunch of strangers. That would make me crabby too.

The results of her ABR are mixed. The good news is she passed! Which is great and means that she can hear. The mystery is that she has abnormal middle ear function with no good reason. She has had flat tympanograms (for those of you who know what that is) every time she has had one, with no fluid in her ears. It could be a malformation of the ears, or she could just be an exception to the rules... again! So we decided with her ENT that the best thing to do is watch her growth and speech and see him again in a few months.

Here are a few pics from the weekend. We had to keep her on oxygen in the mountains due to altitude.

Is it just me or does she look so much older!? She is getting so grown up.


check out that view!
We ended our weekend with friends who mentored John and I when we were first married. They have 6 kids and our girls had an absolute blast. Lyla encouraged us to buy their house but leave them in it (: It was a special treat to get to spend time with them, a family who truly seeks God day to day and does a great job of loving each other.

It took us two flights on two days with an overnight in Denver to get home, but we made some new friends in the airport and I got to share Evie's story a few times. It seems so surreal to talk about those early days sometimes and even looking at these pictures melts my heart. God is so good. We are so blessed.

Love you friends!

Monday, July 4, 2011

ABR tomorrow!

Happy Fourth of July Friends!

We have had a firework packed weekend with family and friends, it has been a blast. We decided to stay in town and it was a nice weekend for us to relax.

I have been working so hard to get a good new picture of Evie to put on this site, but with her new oxygen-free lifestyle I can't get her to sit still for very long!

Evie's ABR is finally tomorrow. She is healthy and I'm sure everything will go great. She will be under general anesthesia which is really the only thing to be worried about but she has done well with anesthesia in the past. Say an extra prayer for her (and I) as we haven't done the hospital routine in a while and it's always a little stressful. Her test is at 8am, so we have to arrive at 630am, and we will be in post-op/observation for a few hours after her test. Hopefully we will have a good grasp on her hearing when we are done and can make plans to work toward better communication whether that be hearing aides, sign language, etc.

Thanks for praying for us! Love you friends, hope you had a blessed 4th (: