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Wednesday, December 23, 2009 - 11:27pm

It's the night before Christmas Eve and I just got done cleaning up puke and wrapping presents.  I guess I should go back in time a bit and explain...

We had Hailey's appointment with her Endocrinologist on Friday afternoon in Madison.  The good news is all indications are the early puberty has not progressed enough at this point where we need to treat it.  Things appear to be holding steady on that front for now.  The challenging news is her growth hormone level continues to be too high.  She is growing in height at about twice the rate you would expect for her age.  More tests will be run at Hailey's MRI on January 7th (while she is under) and overall this will be one of those times where we have to go through a process to try to figure out exactly what's going on and how to treat it, but the bottom line is it's a complicated issue with little in the way of tried and true treatment alternatives. This could be a tough one.  The doctor did want us to start first on a pretty easy and harmless drug that could have some effect on lowering the growth hormone level and slowing down her growth, so we all agreed to give that a try for a few weeks and see if the blood work taken during her MRI on the 7th shows any early positive effect on the growth hormone level and/or gives us any more clues.  

Now as most of you know, a big challenge with Hailey is how we get ANY medication in her at all.  She is so defensive and down right resistant to putting most things in her body, it creates a serious challenge for us if we ever would have to give her medications orally.  To the point where she will gag and throw up if we try to force something in her. Well, this will be the first medication we will have to give her since she no longer has her stomach tube.  We've been dreading this moment, but thought it would come in the way of antibiotics for an ear infection or something simple like that first.  We went ahead and got the prescription today for the growth hormone drug and talked it through with Hailey and we’re happy to report she was very good about doing the first dose in a spoonful of cottage cheese.  The process actually went great and we were thrilled!  It almost felt for a minute like we had a "normal" child in that way.

Apparently this medication is relatively harmless and easy on the body from what we've been told, but unfortunately nausea can be a side effect on occasion.   We really thought it would not be an issue with her based on how she handled her chemo and the relative ease of this drug.   Boy were we wrong!  She threw up once before bed, and then threw up again in the middle of her sleep all over her bed, herself, the bedding and pillows, and her floor.  So I just got done getting everything stripped down, in the washer, a new set of bedding on, and picking up chunks of puke from her carpet and scrubbing it the best I could (grandpa john, we're going to need your carpet cleaner again!) and then doing our best to get her back to bed after we cleaned her up and let her have some snuggle time on the couch. I have to say, very few things stress me out more than cleaning up puke!  Once we made it through that whole ordeal, I did find the strength to finish wrapping presents, but day number one of this medication doesn’t leave us wanting more! We're going to stop giving it to her for now so she can have a normal Christmas and circle back with the doctor after the holiday to see what we need to do in this case.   

Anyway, long story short, the growth hormone issue is not going away, the medicine we're trying first makes her sick, and we're officially done wrapping Christmas presents.   Ba hum bug!

Tuesday, December 15, 2009 - 11:00am

Hope everyone is having a happy and healthy holiday season! 

On December 22nd we will be going back to Madison for another appointment with the Endocrinologist to check in on the progression of Hailey's early puberty and excess growth hormone issues.  What we find will determine whether we begin treating any, all, or neither of the issues at this point and in what manner.  If you didn't know, you wouldn't really be able to tell Hailey has either concerns at this time. 

Then on January 7th we go back for another MRI to check on the status of her tumor.  Of course we are hoping for no growth since the last MRI.  At this point we will be doing MRI's every 4 months until something requires us to change that schedule.

Hailey and Faith are both doing well.  They have had a very good holiday season already and are excited about Christmas.  Both are performing well in school and enjoying their every day activities.  Faith is in gymnastics again and doing very well.  We have not been able to convince Hailey to give some type of organized athletics a try again yet, but she does enjoy going to open gym at the gymnastics center and running around and doing some tricks on the bars and mats.  At some point hopefully we can get her to try a class of some kind again.

There have been some interesting and promising developments on the research and quest for a cure front.  Check it out at www.fightplga.org.

Happy holidays to all of you following this site, and thanks as always for your concern and support! 

Monday, October 12, 2009 - 2:41pm

First, we wanted to update on the golf outings of the last two weekends.  Both outings went well in terms of the support we had from the people that came and the opportunity for us to connect with people we don't see often enough. 

The Tomahawk outing raised approximately $1,500 for the PLGA Foundation, and the Milwaukee outing rasied approximately $10,000 for the PLGA Foundation.  Thanks to all who had a hand in coordinating and supporting these events.  In what seems like typical Team Hailey event fashion, the weather was a bit challenging at both (particularly on Saturday at the Milwaukee outing where it SNOWED!) but as usual everyone had a great attitude and a good time anyway.  Can't thank the supporters and coordinators enough for their efforts and generosity!!! 

Hailey's birthday is on Thursday this week.  She will turn 4 years old!  And next month Faith turns 6.  Both of them are doing very well right now.  We are still in watch and wait with Hailey as far as the tumor itself, and the new developments with the potential excess growth hormone and early puberty issues.  We will find out more on all fronts at the end of December/early January when another round of tests and an MRI will be done. Until then, just trying to live one day at a time as much as possible, and continuing to plug away at "normal" life.  Happy Fall to all of you reading these updates.  We'll check in soon.

Thursday, September 3, 2009 - 10:18am

Just a reminder that we have two golf outings coming up in October:

Ocotber 3rd is Hackin for Hailey - Tomahawk for those who are in the northern part of the state or may be in that area anyway (or just want to take a trip up north)

October 10th is Hackin for Hailey - Milwaukee for those who prefer the Milwaukee area.

If you are interested in participating in or sponsoring either of these events, please click on the EVENTS tab of our site for more information.  Hope to see some of you there!!  And thanks to those who are coordinating each of these events.  Your time and efforts are much appreciated!!

Faith started kindergarten yesterday!  We were choking back tears for the first few hours of the day.  It helped that she has gone to a pre-k type program for the last several years, but it was still almost unbelievable to watch her get on that bus for the first time.  So far she LOVES it and is very excited about the experience.  When she got home yesterday, the first thing she did was her homework!  Lets hope that habit lasts for many years to come.  

Our little girls are growing up too fast!!!!