Now we wait

Posted on October 30, 2012 by Kristen Page

The MRI was this morning. There are some perks. Child life brought an iPad with much better games than mommy has:

The girl did great with the sedation and the test took about an hour. She was really “wobbledy” and “didn’t feel good” when she woke, but she managed to eat crackers!

She ate her special cookie on the way home proclaiming “it’s a bad ghost so I have to eat it!”

Now we are home and the girl is trying to convince mommy that she won’t fall if I let her play. After a sandwich enjoyed by the girl and the BAD puppy, she is now sleeping off the sedation.

The mom is wearing some special socks that remind her of friends and prayers and God’s faithfulness.

We will talk with the neurosurgeon next week. Until then we will run like a rocket and have as much fun as we can!

Update

Posted on October 24, 2012 by Kristen Page

We have spent the fall visiting every doctor that the girl sees at Children’s. She has these little issues that keep creeping up. First we had some changes in the way that she runs. We had muscle testing at Children’s (and of course her PT has been watching) and until recently she seemed strong, just uncoordinated. She started falling and having some accidents again in early September. We had the routine muscle testing (again she tested strong) and bladder testing (CMG). The CMG wasn’t normal, but it wasn’t anything like pre-surgery and it wasn’t terribly alarming. The urologist put the girl on a medicine that would control bladder spasms, and suggested a different laxative to see if we could get past the accidents. The Dr. was concerned about the accidents and walking issues, and encouraged us to call the neurosurgeon. The neurosurgeon ordered an MRI and a follow up sooner than the previously scheduled December MRI. So, the girl will have an MRI on Tuesday and we will learn the results the following Monday. I’m hoping that this is just a “better safe than sorry” MRI, but the “strength” of the girl’s legs is changing (as of this week). I’m glad we can get this checked next week, but we’re all still a bit grumpy about more doctor visits!

Who’s the coolest adult in the room?

Posted on October 24, 2012 by Kristen Page

We have been enjoying a terrific fall break. The gir’s Nonnie came and we have had so many adventures. We went to the city this weekend and enjoyed seeing the new Lurie Children’s Memorial Hospital. Any place with Whales hanging from the ceiling and anemones in the lobby is pretty awesome!

When we go to the hospital and there isn’t a doctor involved, it’s a good day! The new hospital is across from a very cool fire station and a very fun park!

After visiting a friend in the hospital (who is doing great, we are happy to report), we went to see a very fun concert! Elizabeth Mitchell is one of the girl’s favorite singers! She was so excited to meet “Miss Elizabeth” and her daughter Storey. The concert was at the Old Town School of Folk Music in a small auditorium. We snuggled in and enjoyed all of our favorites like “Little Bird”

Elizabeth Mitchell, “Little Bird”

At some point, our “very shy” girl (ha!) ran down to the stage and set up at Elizabeth Mitchell’s feet.

Before we knew it, she volunteered to lead the train while they sang “Mystery Train”. When the girl’s daddy went down to “help”, “Miss Elizabeth” announced that he was “the coolest adult at the concert!” We think so too!

(sorry for the poor picture quality…very low light, and no flash!)

After the concert, we got to meet “Miss Elizabeth”, Storey, and Penny.

Then the girl put on a concert of her own!

Fall break was a terrific “break”! I’ll update you on the girl’s medical situation tomorrow!

Not your average girl!

Posted on October 19, 2012 by Kristen Page

Time is zooming by and I haven’t given an update in a long time. The girl had a great initial recovery following surgery and spent the summer getting stronger. However in September, some of the symptoms that led to the surgery returned. We went for her bladder testing and had about 3 weeks of frustration trying to communicate with doctors. We finally visited the urologist for the follow up after the CMG. The test wasn’t “normal”, but definitely did not totally explain the accidents. We are trying a new medicine and will see the urologist again in 6 weeks. Additionally we were asked to follow up with the gastroenterologist and the neurosurgeon. The neurosurgeon ordered another MRI (10/30) and follow up with him (11/5). I’m hoping that this is a “better safe than sorry” MRI and that nothing is wrong. I’m praying that the girl is just taking a little longer to recover than the “average” child.

“I’ve been thinking…”

Posted on October 16, 2012 by Kristen Page

Tonight the girl said “Mommy, I’ve been thinking that when I get big I want to be a farmer and cook for my sheep.”

This mom loves the idea! I’ve also been thinking about the future. Tomorrow we have the follow-up with the urologist. No matter what the doctor says, I know the girl will be ok. She’s clever, funny, persistent, and nothing’s going to stop her!

September is gone?

Posted on October 1, 2012 by Kristen Page

I can’t believe that September is over! We had an appointment at Children’s every tuesday of this month! I wish I had an update to share, but we are still waiting to learn the results of some of the girl’s tests. Once we know more, I will post an update…we go to the spina bifida clinic on the 16th.

Today is the daddy’s birthday! He’s getting pretty old, but he’s still smiling. The cake was the girl’s idea: