Bookends – The end of one chapter, and the start of a new one

Posted on August 26, 2013 by Kristen Page

Next week will be the first week in 2.5 years (with the exception of time at the science station or vacation) that we will not go to Milestones for PT or OT (or both). The girl graduated from OT last week. We will really miss Ms. L! She’s always so encouraging and fun to play with! I know we will stay in touch!

Thanks Ms. L! and thanks Milestones!

You may ask yourself, “what will the girl’s mom do with all that extra time?”

Piano Lessons!

The girl had her first piano lesson yesterday. She LOVES it!

Ms. B is a great teacher and the girl loves her. Today was our first day to have 2 instruments to practice, and the girl did it with no hesitation. She practiced for an hour between cello and piano. I hope I can do this! I know she can!!!

One year

Posted on May 8, 2013 by Kristen Page

One year makes all the difference! A year ago today the girl had her surgery at Lurie Children’s. We were starting two weeks of being flat! One year later, you would hardly know that there ever was a problem! In fact, we can’t keep her still if we want to!

Graduation

Posted on April 26, 2013 by Kristen Page

The girl has met her physical therapy goals!! She’s super fast and confident and ready for anything!!! We first met the girl’s PT in the fall of 2011 after the neurosurgeon said “she just walks funny, go get some PT”. The girl certainly had a distinctive way of walking!

Our friends called it the “zombie walk”. The girl worked hard in PT, but hit a plateau. Without Ms N, we never would have gotten the doctors to listen! We might have never met Dr. A (the new neurosurgeon)! We are very thankful that the girl was in such good hands. Look how far she’s come!
From this:

To this:

We can never thank her enough!!!! We have a lotta love for this amazing PT! Thanks Ms N!!!

Spring Break

Posted on March 15, 2013 by Kristen Page

The girl and her mommy are enjoying some spring weather and fun with family this week. We started with a visit to the neurosurgeon. He’s very happy with her progress and we don’t need to go back for a year! We will follow up with the urologist in June.

We made it to TX on Monday night and the girl has been enjoying her grandparents and cousin (aunt and uncle too) all week!

We are going to take advantage of the beautiful weather and have a picnic today! Can’t wait!

Results!!

Posted on June 15, 2012 by Kristen Page

Good news. The Surgeon did not see anything abnormal on the MRI! He’s not sure what’s going on, but it could be inflammation. We will try a round of steroids and see if that helps!

She’s still a little “wobbledy” as she puts it, but we are encouraged and happy!

The big truck

Posted on June 15, 2012 by Kristen Page

The girl had an MRI this morning to see about those tickly feet. The cool part was that the MRI was in a truck! They let her look before she was sedated. When she woke up the first thing she asked was “when do I ride in the truck?” Thankfully she believed me when I told her that she had just finished a ride. No news yet, but I’ll post when we learn something.

Amazing Peace

Posted on May 8, 2012 by Kristen Page

We have been so blessed by so many prayers! We have had a very peaceful morning, and know its because we are centered in God’s perfect peace. It’s so amazing to know so many people from everywhere…so many we haven’t even met…are praying!! Thank You! The girl was a little agitated, but really did great. She’s in there right now…in very good hands!

She took it well

Posted on May 8, 2012 by Kristen Page

We told the girl that we were going to the hospital tomorrow. She said “that’s ok! I’m brave. I had 3 X-rays before!”. We also told her about her new puppy “Amos”. I think the picture explains it!

It’s set

Posted on May 7, 2012 by Kristen Page

Tomorrow morning, 5/8/12,at 7:45. We have to be at the hospital by 6:00am. I think we will tell her tonight…

More tomorrow!

change in plans – MAY 8!

Posted on May 2, 2012 by Kristen Page

This picture says it all…what a crazy day! It started with a trip to the gastroenterologist. Not very eventful or informative, but necessary for him to be on board with the plan. At least the hospital was nice, and the girl was amazed by the piano that played itself!

This afternoon, the nurse called to talk about the surgery. I asked if the girl might be well enough to travel to the beach by the first week of June (mid week). The trip is a family trip, and it’s been planned for a long time. This girl LOVES her Nonnie and Poppie…and her BIG GIRL COUSIN!!! So, she has been talking about the beach for months. We have read Ladybug Girl at the Beach about a million times. So, when the nurse suggested that the doctor might be able to work the girl in sooner, we thought this was a great idea.

The date has been moved to May 8! That’s a week from today! This is good in so many ways, but the best thing is we won’t have as much time to really get nervous. I won’t have time to read as many papers and over-think this. ( I’ve already read about 5 of the surgeon’s papers. He doesn’t have any on TC, but he is well-published, and several are on surgical procedure. So, I know he is current and well-read, and that gives me comfort).

We will have the pre-op visit to the pediatrician this week, I’ll turn in my grades, and by Monday, we’ll be ready! We don’t know what time on tuesday, but we will be ready.

Tethered

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