We only had to take CurlyGirl over to the St. Mary's Hospital Campus for today's appointments but is was enough for one day. She suspicious anytime sometime other than Daddy or I touched her. The staff at Mayo is great - very patient and understanding - They seem to go out of their way to anticipate confusion and they repeat things and explain and then repeat again.
That is a strategy that more medical institutions should use. The last time our doctor in Michigan needed a urine sample, I took her to the local hospital with the prescription and they sent me home with the collecting devices and told me to read the directions. Here they actually placed the device on KT and gave me a choice of removing it myself or returning to their office. (Daddy wants a couple for Chase for cold winter days.)
Anyway, that little rant was off opic. Today, KT was the second patient of the day for Dr. I. She had blood taken, skin and muscle biopsies and a lumbar puncture. She's developing a distrust for places that smell like rubbing alcohol. After a couple of skirmishes, KT was sedated with laughing gas and then the IV was inserted. The staff invites one of the parents to suit up for surgery and stay with the child until they fall asleep. Then you wait in the family waiting area until your child reports to the recovery room. KT was pretty sleepy so we didn't leave Mayo until after 1:00.
Procedural info: They schedule pediatric surgeries of this sort in order of age: Youngest first to oldest patient. We would have been first except KT was having multiple procedures which meant dovetailing the schedules for two surgical teams. Initially, KT had been scheduled for two separate operations but when we met with Dr. I yesterday, the team rearranged schedules to allow for only one sedation. So I had to call into a Patient Information Voicemail system where your doctors can leave messages for you like the one that told me what time we needed to report today. Mayo is amazingly well-organized around the concept that patient care comes first and this is reflected in everything they do.
KT is now giggling while she watches Bear from the Jeep. We're supposed to keep her still today and the Jeep stroller allows her to lie back and still watch Tutter the little blue mouse. Hopefully, she'll sleep a lot today and finally shake this cold. McK is making friends playing in the toddler pool. She's finally gained the courage to slide down the little toddler water slide! She misses Chase and our white house back in Michigan. We'll be home soon! - Mommy K
Wednesday, September 24, 2008
Tuesday, September 23, 2008
Afternoon of Day 1
We're back. Today we met with Dr. Marc Patterson, the infant neurology specialist, CurlyGirl gave a urine sample and we met with the surgical team for tomorrow's procedures. Dr. Patterson interviewed Daddy and I for about an hour and we received the first scheduled version of our week. Dr. Patterson is going to run some more extensive DNA tests which will be looking for genes with missing, moved or extra sections of genetic information. (This is why we study genetics!)
In order to run these tests, they need more DNA samples. So, tomorrow KT will be sedated so the surgical team can 1) Draw blood 2) Remove skin and muscle samples 3) perform a spinal tap. We won't know what time she is scheduled for surgery until after 8:00pm (CST). Some of these samples are being sent to New York and Georgia for testing and analysis.
Thursday, we meet with a genetic historian, a genetic counselor and then again with Dr. Patterson at the end of the day. And we should be done; however, we have already paid for the hotel room and our schedule could change.
This is the end of the today's blog for family, friends and students. Later tonight, I'll write a posting for people who are bringing toddlers to the Mayo Clinic describing the types of things we wanted to know before we came.
In order to run these tests, they need more DNA samples. So, tomorrow KT will be sedated so the surgical team can 1) Draw blood 2) Remove skin and muscle samples 3) perform a spinal tap. We won't know what time she is scheduled for surgery until after 8:00pm (CST). Some of these samples are being sent to New York and Georgia for testing and analysis.
Thursday, we meet with a genetic historian, a genetic counselor and then again with Dr. Patterson at the end of the day. And we should be done; however, we have already paid for the hotel room and our schedule could change.
This is the end of the today's blog for family, friends and students. Later tonight, I'll write a posting for people who are bringing toddlers to the Mayo Clinic describing the types of things we wanted to know before we came.
First Day at Mayo!
Today, we finally get to go to the Mayo Clinic! It's very exciting - not the trip itself but the prospect of getting answers for KT. It's like meeting a long-distance relative you've heard of but never met; hopefully we'll get a name and some idea of what to expect and how to help KT adapt as she grows up.
Monday, September 22, 2008
We've arrived in Rochester
We left Charlotte with Grandma K about 1:00 on Saturday afternoon. Mommy (TK) was ill most of Saturday and contributed to our delayed departure (along with flooded basements, School Board presentations and general life stuff.)
Saturday, as we drove to Wisconsin, CurlyGirl started to run a fever and soon it was clear, she's a got a really bad cold. We drove to Madison, Wisconsin where, we stayed at Marriott West, thanks to Mr. Wilson and Priceline. They had the most comfortable beds and pillows I have ever experienced in a hotel room! We arrived about 8:00 Michigan time! McK had a lot of fun picking up stars in the hallways and dancing to the music from the ballroom but CurlyGirl slept all evening. Poor kid!
Sunday, we drove out of Madison on Route 14 towards Praire du Chien. Fog hung over the hills and fields, yet it was a beautiful drive through farms and small, small towns. I'd like to come back someday when the girls are older and visit Taliesin. By the time we reached Praire du Chien, TK and McK were sick too. We stopped at Wal-Mart to by medicine and Kleenex and then started driving north on the Great River Road. This roadway parallels the Mississippi River and was incredibly beautiful. The sun reflected off of limestone bluffs, the leaves are starting to turn, and the Mississippi itself was breathtaking. We drove north through many small towns, stopped briefly in LaCrosse, and at Winona, we crossed the Mississippi into Minnesota. Saw Pepin Lake - more about that later.
We spent Sunday night in St. Paul and visited the Mall of America today. Girls are sick and tired - literally. Not even a Disney store could create much excitement. Then we drove to Rochester.
Pretty drive from a really big town to a good sized town and not much in between. Lots and lots of prairie.
Tomorrow we check into Mayo. We don't really know what to expect except we need to get up early. Hopefully, CurlyGirl is better and this "cold" doesn't interfere with any tests that need to be performed. Thanks for all your prayers.
Saturday, as we drove to Wisconsin, CurlyGirl started to run a fever and soon it was clear, she's a got a really bad cold. We drove to Madison, Wisconsin where, we stayed at Marriott West, thanks to Mr. Wilson and Priceline. They had the most comfortable beds and pillows I have ever experienced in a hotel room! We arrived about 8:00 Michigan time! McK had a lot of fun picking up stars in the hallways and dancing to the music from the ballroom but CurlyGirl slept all evening. Poor kid!
Sunday, we drove out of Madison on Route 14 towards Praire du Chien. Fog hung over the hills and fields, yet it was a beautiful drive through farms and small, small towns. I'd like to come back someday when the girls are older and visit Taliesin. By the time we reached Praire du Chien, TK and McK were sick too. We stopped at Wal-Mart to by medicine and Kleenex and then started driving north on the Great River Road. This roadway parallels the Mississippi River and was incredibly beautiful. The sun reflected off of limestone bluffs, the leaves are starting to turn, and the Mississippi itself was breathtaking. We drove north through many small towns, stopped briefly in LaCrosse, and at Winona, we crossed the Mississippi into Minnesota. Saw Pepin Lake - more about that later.
We spent Sunday night in St. Paul and visited the Mall of America today. Girls are sick and tired - literally. Not even a Disney store could create much excitement. Then we drove to Rochester.
Pretty drive from a really big town to a good sized town and not much in between. Lots and lots of prairie.
Tomorrow we check into Mayo. We don't really know what to expect except we need to get up early. Hopefully, CurlyGirl is better and this "cold" doesn't interfere with any tests that need to be performed. Thanks for all your prayers.
Sunday, August 31, 2008
Our first post!
Hello - If your reading this post looking for deep spiritual insights, pithy political analysis or practical parenting tips, you're in the wrong place. This little blog is being written for a couple of reasons.
1) This is a way to communicate with family and friends as our family travels to the Mayo Clinic in Minnesota later this month.
2) As we've tried to get ready for this trip, we've looked around the Internet for other blogs in order to know what to expect. While none of the other children have medical conditions quite like Kaitlyn's, it was useful to read of other families experiences. So in the interest of helping others in similar situations, we plan to blog up to and through our trip to Mayo.
So, if you know of our family, please pray for us as we prepare for this journey and for our CurlyGirl, in particular. If you've found us because you're in a similar situation or have a question, leave a message in the comments.
Thanks - TK
1) This is a way to communicate with family and friends as our family travels to the Mayo Clinic in Minnesota later this month.
2) As we've tried to get ready for this trip, we've looked around the Internet for other blogs in order to know what to expect. While none of the other children have medical conditions quite like Kaitlyn's, it was useful to read of other families experiences. So in the interest of helping others in similar situations, we plan to blog up to and through our trip to Mayo.
So, if you know of our family, please pray for us as we prepare for this journey and for our CurlyGirl, in particular. If you've found us because you're in a similar situation or have a question, leave a message in the comments.
Thanks - TK
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