Monday, September 29, 2008

We're back!

Well, we're a couple of days behind. Too tired, sick kids and no DSL all contributed to the delay in postings. (By the way, the only hotels that wanted to charge for $9.95 for one night of DSL were the "3 Star" ones: The Sheraton and the Marriott in Madison; the "lesser quality" hotels all provided free DSL.)

You might have noticed that I'm blogging from home on a school day, while I was getting ready this morning McK threw up a couple of times. She seems fine now - maybe too much "yummy" food yesterday or nerves about today. She really liked "living all together in one room" at the hotel. Between missing that, losing her new "best friend", Maddie, and both McK and Mommy going back to school, it could be too much stress.

CurlyGirl came out of surgery fine with very interesting Band-Aids. On Thursday, we met with a genetic historian who wrote a pedigree of our families, primarily tracking developmental delays of any kind. Then we met with Dr. Ellison who interviewed Daddy and I and examined CurlyGirl looking for any traits she appears to share with other children that have a common phenotype, or appearance.

Dr. Ellison confirmed
1) She does not have the Angelman's genetic disorder
2) She's not autistic
3) He can't point to a specific disorder.
So we are going to be scheduled to see him again in 8months to a year from now when more signs of a specific disorder may appear. He's also recommended that KT be seen by the Developmental Delay Clinic at Mayo where they can be involved in evaluating her skill levels and in recommending appropriate therapies and strategies. It takes about 8 months to get in to the Clinic, so we're hoping that our return visit can be scheduled during summer vacation.

Then we met with Dr. Patterson who confirmed that almost none of the test results had come in yet. They will send us a report through the mail in 3 weeks or so. They did reserve DNA for future testing should Dr. Ellison or Dr. Patterson want to test for a specific disorder after reviewing the results. But unless a chromosome is missing a relatively large piece or a big piece of DNA has been copied on the wrong chromosome, they are unlikely to find a cause with more "clues" as in more examples of KT's missed milestones or when there is milestone she can't meet.

We managed to have a little fun along the way and learned why you should drive around LaCross, Wisconsin during Octoberfest. I'll blog a little about our adventures later - Mommy K

Wednesday, September 24, 2008

Mural at Mayo - 16th floor

About 1 year ago, the 16th floor of the Mayo Building was remodeled and dedicated to children's care. The floors, walls, ceilings and art was designed around the theme of the 4 biomes found in Minnesota and the different species of plants and animals that live there. Hopefully, I'll post more pictures later, but here's one of CurlyGirl looking at a mural of 100 different species found throughout Minnesota. The artist cuts pieces out of cardboard packaging to make his murals.

Day Two: Only One Appointment Today...

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

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.

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.