Wednesday, June 27, 2012

Swimming Lessons

Miss Kennedy took swimming lessons for the third summer!  She has been a fish since she was a baby so it is no surprise that she passed her level again this year!  

The skills she worked on this year were front stroke (freestyle), backstroke, elementary backstroke, scissor kick, and diving off the side.  The pool was so full of classes this session that Kennedy's class met in the 12 foot!  I was so proud of her for not being scared - who am I kidding?!  She is never scared of water!!



I passed!!!  Onto Red Cross Level IV!!

Tuesday, June 26, 2012

Horses & Corn

I have no idea where she learned how to drink from her bowl.  -sigh-

 Quinn has been enjoying the play horses lately.  She rides on Kennedy's 'big' horse and says "Go Go Go!"  And we ride the stick horses around the house.  I say "Giddy-up" and she says "Gup Gup Gup!"

 Yum!   Corn on the cob!  Quinn really wanted to eat it - just like her big sister.  Kennedy LOVES sweet corn!  She is a great role model in showing Quinn that veggies are yummy.  Too bad Quinn doesn't really care.  She kept trying to eat the corn but once it was in her mouth she would make a disgusted face and spit it out.  Maybe some day she will eat vegetables.

Monday, June 11, 2012

HHT and Nosebleeds

I recently posted about June being HHT awareness month and how I hoped to share more with all of you.  So here we go!

Kennedy was recently clinically diagnosed with HHT.  Here is what the doctors look at:

The clinical diagnosis of HHT is considered:
Definite when three or more of the criteria below are present
Possible or suspected when two of the criteria below are present
Unlikely when fewer than two of the criteria below are present
Diagnostic criteria for HHT:
  1. Nosebleeds(epistaxis): spontaneous and recurrent
  2. Telangiectases: multiple, at characteristic sites, including face, lips, oral cavity and fingers
  3. Visceral AVM (pulmonary, cerebral, hepatic, spinal) or gastrointestinal telangiectases (with or without bleeding)
  4. Family history: a first degree relative with HHT according to these criteria

Kennedy has #4 - Sam had HHT and I have HHT.  She has #2 - a few spots inside her mouth.  And she has #1 - luckily her nosebleeds have never been severe. But I do have the school nurse chart them so we can keep a record.  So, we did not do genetic testing for and myself and my father have never had it done either.  We are currently looking into genetic testing for Quinn and are waiting to hear from our insurance company.  Fun times, right?! 

One of the most common symptoms of HHT is nosebleed.  In fact, 90% of HHT patients have recurrent nosebleeds.  Of those, 30% began seeing nosebleeds by age 10, and 80% by the age of 21.  I remember getting just a few nosebleeds as a kid.  My father had them much more often and they were much more severe.  There are some HHT patients who become anemic from the loss of blood through nosebleeds, some become transfusion dependent, many can't live a normal life due to crazy amounts of nosebleeds.  There are several treatments, but none of them seem to stop bleeding altogether. 

There is a nosebleed severity scoring tool that HHT Centers use to help determine possible treatments.  It is a scale of 1-10 and my score is 1.92.   If you would like to score your nosebleeds or those of someone you know, go to this site: Epistaxis Scoring Tool.  It takes a minute.  

Some treatment options are as follows:
  • Young's Procedure - closes the nasal cavity
  • Nasal Packing 
  • Laser Treatments - used to cauterize the vein
  • OTC ointments - to keep the nasal cavity lubricated
  • OTC nasal sprays - same as ointments
  • Septal Dermoplasty - replaces the nasal lining with thicker skin
  • Avastin - a drug that has just recently been used to help by slowing blood vessel growth
  • Hormone Therapy

If you or someone you know suffers from recurrent nosebleeds with HHT, there is a study going on to look at several of the treatments mentioned above.  If you would like to participate you can check out the info here: NOSE study.  

I feel very blessed that nosebleeds haven't been a horrible side effect for me.  And I pray that Kennedy's continue to be minimal.   

Hope you learned something new about HHT!!!!  Thanks for reading! 



Tuesday, June 5, 2012

For the Love of Animals!

Hooray for a trip to Deanna Rose Children's Farmstead!  We love this place!  Kennedy even had her 4th birthday there!!!  Come see the fun we had!

 I just love this first photo - for so many reasons!   #1 - my bff taking photos of the girls from the other side! #2 - these 3 girls are so close and I love that!  #3 - Taylor had to borrow her mom's sunglasses to "match" Kennedy! #4 - The happiness of summer and exploring on their faces!  #5 - they had no idea I was taking their photo!
We always get photos taken in the butterfly garden!!!!

Quinn was so taken with the animals!!!  She couldn't get enough of the goats!  The older girls fed the goats while Quinn squealed and giggled.  She even was brave enough to hold out her own had to feed them.  So I decided she would do well in the enclosed goat area!

What do you think?  Did she like it?!

It goes without saying that Kennedy loved feeding them as well.  This has been a favorite part for her for years!
We were able to hook up with some more friends while there.    The big kids got Discovery Passbooks where they have to look around the Farm for hidden questions and then search for the answers.  Kennedy and Owen went crazy over answering the questions and filling out their books!!!!!  Here they are coming out of the General Store!
It was a great day!

Monday, June 4, 2012

First Summer Weekend!

Our first weekend of the summer was great fun!!  We have a tradition every Memorial Day weekend.  We attend Celebration at the Station and I look forward to it all Spring!  The Kansas City Symphony puts on a free concert outside of Union Station.  The audience sits on the hill overlooking Union Station.  We bring lots of food, blankets, chairs and games.  This year we brought some friends to experience it for their first time!  The children searched out their parents' electronic surprise. ;) 

Once the sun set, this children played with glow sticks and flashlights!  It was great watching the lights projected on Union Station and enjoying the KC skyline.   Eventually we turned out chairs around and watched the wonderful fireworks display over the WWI Memorial.  Quinn did NOT enjoy the fireworks at all, poor girl.  Too noisy!!  But she had done an amazing job all night considering how late she was up!  It was an awesome evening!

We also took our first dip in one of the neighborhood pools!  There had been quite a thunderstorm just a day before and the water was still chilly!  But Kennedy was still her normal fishy self - loving every minute in the water!  As I suspected, Quinn is going to be quite the handful at the pool this summer!  She thinks she can just run anywhere and go in the big pool at any time!  She will absolutely be wearing a flotation device all summer!  

Hooray for summer!!!
We can now cross off a few things from of Summer Bucket List!!!
#58: Go to a Free Concert
#38: Visit Multiple Pools (this was pool #1)

Saturday, June 2, 2012

Memorial Day 2012

We had a busy Memorial Day Weekend this year!  Our actual Memorial Day was filled with family time!!  We had a grilled turkey burger lunch at the Miles' and the Kennedy, Logan, Quinn and Zia enjoyed some time in the sprinkler!!

Isn't she cute?!

First sprinkler action of the year!

Logan preparing to run through the sprinkler!

In the morning we went to the Louisburg cemetery and caught part of the ceremony.  Papa Lou, Aunt Barb and Great Papa Henry came as well.  We all spend some time at Sam and Great Grandma Helen's graves.  Then we all went to Miss B's Cafe for brunch. 
Three generations! All in blue!

Papa shows Kennedy the gravesites of other relatives. Quinn says "Wait for me!"

Rare family was super windy!

Quinn with Great Papa Henry.

It was a great day!

Friday, June 1, 2012

HHT Awareness Month

 In the past on my blogs I have mentioned that I have HHT.  I have spoken about how Sam had HHT.  I have shared little tidbits here and there about HHT.  But it is time for me to begin sharing even more.  Being that this is HHT Awareness Month, I believe this is a fitting time! 

A few weeks ago I took my girls to a local doctor interested in treating children with HHT.  I have had a hunch for quite some time that Kennedy had HHT and figured it was time to know for sure.  Dr. McBride was fabulous...she is the FIRST doctor I have MET that actually has HHT and has children with HHT.  I can't tell you how comforting it was to actually meet with someone who knew what we were talking about!  She quickly diagnosed Kennedy with HHT, as I suspected.  I am looking into genetic testing for Quinn as she isn't showing any outward symptoms as of now. 

Over the course of the next month I will be sharing a bit about HHT and also personalize it for you by sharing how it has affected our family.  I hope you will read along!!  It may affect someone you know! 

First, I ask that you watch this is worth it!   My doctor, Dr. Chakinala, speaks in it...I will see him again in a few months!

The HHT Foundation's Awareness Campaign has 3 goals:
  1. Identify the 90% that are Undiagnosed - The more people hear about HHT - through word of mouth, watching a video, reading a post on Facebook, or researching nosebleeds on Google - the more people will be aware of the disease. This will ultimately lead to self-diagnosis, a visit to a medical professional, or a call to the HHT Foundation. These actions alone can potentially save a life!
  2. Educate Medical Professionals - According to a recent medical survey, most HHT patients experience an average of 11-14 years of misdiagnosis by Emergency Room physicians and Otolaryngologists (ENT) due to a general lack of knowledge about the disease. Awareness can lead physicians to seek information and training on how to diagnose, treat, and manage HHT which will ultimately increase the number of medical professionals  who are knowledgeable about HHT and make it easier for patients to receive proper care.
  3. Motivate the HHT Community -  We need HHT patients, physicians, and researchers to engage their families, local friends, Facebook friends, and co-workers in the fight to find a cure for HHT. The simplest thing you can do is send an email, which is already written for you, to your Congressional Representative. Although the Foundation has significantly advanced HHT in a variety of venues, we are only one voice - our message is so much stronger, louder, and impactingl when we all recite it together!
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