Day + 1,142 (for Lexi)

The girls have safely returned home - so I am hiding in my basement again!!!    It was good to be in charge for a couple of days.    

Dakota's never did get to see Dr. K - Tuesday was just too busy.    As we discussed earlier, the eye doctors wants the pirate look for Dakota to strengthen her eye (the one that is crossing).    I still can't remember if it is the right or the left.    So far Dakota the Destroyer has not cared for any eye patch wearing (Arghhhh!!).    The patches do not fit well - so Julie is looking for something that might fit better - but my bet is Princess Dakota is not interested in being a Pirate.   The dentist thinks we should brush the back of Dakota's teeth better....and I think I'd be healther if I lost weight.    Neither of those two things are going to happen.    Dakota can bite down quite hard, and I like pizza.    In the perfect world we would do a nice complete brushing - but our world is far from perfect.   

Bailey and Lexi loved the Duke soccer camp.   They both made the All-Star team and where the leaders on thier team.   They where a little disappointed the caliber of players was not a little higher - some of the kids where just learning soccer (rich doctor's kids).     The girls loved meeting an Olympic medal winner who was teaching them drills to improve thier speed.   Speed can be a pretty handy asset in soccer.    They also got to meet Carla Overbeck who was the US Woman's Soccer Team Captain back in the days of Mia Hamm and friends.    She won an Olympic Gold medal.   Bailey was totally exhausted by the end of camp - and maybe a little crabby (but don't tell her I told you that).  

I drove to PA on Thursday night to play in a golf outing fundraiser for the CTSF on Friday.    Brian and Sherri Manning put the event on - and it was very well done.    I got to play golf with some great people, I got to spend the afternoon with Brian and Sherri and thier wonderful friends, and we raised a bunch of money for Tay-Sachs disease research!!!  I even got to speak to the entire group - I think they enjoyed the oppurtunity to get some rest.   It was a wonderful day - and not a drop of rain thanks to the heavenly work of DJ Manning.   The Manning Family has been continuing the fight to find a cure now two plus years after DJ's passing.   They where a huge inspiration for starting the CTSF and wonderful role models going forward.   With all the bad associated with having a Tay-Sachs child, the benefit is meeting people like the Mannings. 

On Thursday we head toward St. Louis to attend the Elise Rochman 4th Annual Tay-Sachs Concert!!!   The event is on Saturday (6/27) but we hope to visit with the Rochman's (another unbelieveable family that helps lead the way for all Tay-Sachs families to follow) and show Dakota the St. Louis arch on Friday.     Julie and I got engaged under the St. Louis arch.  I can't remember the date - but I know it was before we got married (don't tell Julie I don't remember the date).   I do remember we went back to the hotel to order pizza - and it was the worst pizza we ever had!!   That could be why I purged the date from my memory.  

Bailey is guest playing for the North Olmsted travel team (her friend Kylie's team) in the NOSO tournament 4th of July weekend.    Then we are off to Bear Lake to get our fill of family time.  Tim and Erin bring thier kids, Sue and Robb (who own the cabin/cottage/garagemahal) will bring thier boys, Mom and Dad Bihn will be on hand - and us.     We'll also get in some Duggan time as they have a place just down the road at Crystal Lake.   We are looking forward to it.   They have a great golf course down there (Acadia Bluffs), we do a float trip down the river, and lots of water skiing and jet skiing (are there two ii's?).  

Once again all is well in Dakotaville.  She went to summer school today - after missing the first week while at Duke.    With all her drug use and absenteeism - I don't know what comes after summer school - maybe boarding school or Gitmo.   Dakota continues to be in good spirits - the seizures might be increasing once again.   I think her body adjust to the meds , and then the seizures push through - not that I am a doctor, don't let the good looks fool you.    We have to manage the heat - Dakota's body does not do a good job regularing it's own temperature.    But the smiles, giggles, and kisses are still worth thier weight in gold. 

St. Pats is doing a mass for Dakota on Saturday, June 27th - but Dakota will be in IL with her friend Elise.    Thanks to Aunt Mo for setting it up.   We'll take all the prayers we can get.

The 2009 Sports Auction looks to be on for Friday, October 23rd.   Eric Steinbach will be on hand - with friends.     It is possible the good looking kid from Notre Dame will be on hand - but no promises this far out.   Also Joe Thomas and others.    We'll probably be limited to 350 tickets - so I'll let you know when you can sign up.   It will be held at either the Marriott on West 150th near the airport or the Crowne Plaza again.  Originally the Crowne Plaza was booked, but now they are interested again - not sure what happened.   More details to come - but keep the date open - Friday, October 23rd from 6pm till 11pm.   

Thanks for the support - and both the Father's day wishes on the Guestbook.     Show me the love!!!