Yeah, so it's been one of those months where I'm like, oh wait a minute, I have a blog! ::slaps forehead::

Of course I didn't really forget that I have a blog, but we've been so insanely busy that every week that goes by without a blog entry I dread how much I have to catch up on.  So in short - we were really busy.

But we did do a little bit of this -

4th of July Parade on vacation in Flagstaff, AZ

A side trip to the Grand Canyon

A family camping trip in Indiana to celebrate Father's Day and Phil's Birthday
Hanging out with cousins

A couple weddings and receptions

And a trip to the Cincinnati Zoo with the ladies and babies from Transatlantic Blonde and Mookitten

Oh, and we also celebrated our 3rd wedding anniversary.  It's been a great time getting to travel and celebrate weddings/birthdays/anniversaries with everyone.  We're happy to be home now and back to our regularly scheduled program.

I've also managed to have 3 weeks of meeting with a therapist to get some things off my chest (in between traveling).  Mainly just talking about the changes we've had to go through with Lillian's special needs... the anxiety that comes with her future having PWS.  It's been nice talking to someone that really seems to "get it".  The therapist I see has also had some interesting things happen in her life that somehow help her understand what we're going through.  It's really been a blessing. 

Lillian is really doing great.  Her energy is picking up and she gets stronger every day.  She's learned to blow raspberries and says dadada more regularly now.  She's such a joy in our lives! 

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  1. Wow...looks like your having a wonderful summer...beautiful pic's!!!
    Congratulations on your anniversary!!!

  2. Great pictures Sare, the pic of you and Lillian camping, now that is what life is about, enjoying your children!

  3. I have a 6.5 year old girl w/ PWS. She was not diagnosed for 20 months.... Longest 20 months of my life~!! I was just relieved to know she was going to be w/ us for a while--some scary "stuff" out there.

    Some advice to you that has been give to me. #1... never read anything on the internet. That is old information, relative to current medicine. In addition, you are treating the individual child, not the entire syndrome. #2.... As soon as you can you start building healthy lifestyles for the child. My daughter, Cassie, walks a mile to school every day and is on a 900-calorie diet to stay thin and fit. No awful eating yet. #3..... I cannot tell your doctor what to do, but all of Cassie's doctors, from Pediatrician to Endocrinologist wanted her on Growth Hormone. We were very conservative w/ sleep studies before, a month in and then 6 months in. My mother refers to it as the miracle drug. We are involved in clinical research in FL, and they really pushed it too.

    Lastly, not advice that was given to me from any medical team, but from one PWS mom to another...... You are at a really tough stage that will last a bit longer. Cassie sat up at 13 months, crawled at 23 and walked at 33 months. After that things got a little easier. Not that I don't work hard still and worry a lot, but you are at a much tougher stage. Hang in there~!!

    To provide you w/ some hope, Cassie has taken up swimming this summer and can swim 10 lengths of a 25 meter pool. She successfully completed Kindergarten and will be heading to a mainstream first grade class in the fall. Yes there are still therapies and a ton of work, but it is all paying off now. There were about 5 years of happy milestones, but now I am receiving a ton a "job satisfaction."

    Good luck~!!!!!



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