Our One SMALL Step Video

It was emotionally draining to go through all the photos of Lillian's first 3 years.  Putting those three and a half years into a three and a half minute video wasn't easy, but I'm happy with the outcome. 

Check out our video and then go to http://onesmallstep.fpwr.org/dw/walking/location/541 to donate or sign up to come to our event!  There are events all around the country and even international. 

Or check the locations and see if there's one close to you.  I promise they will be fun, family friendly, and uplifting, and all of the money raised will go towards Prader-Willi Research.




Daily I stand in awe of my children wondering how I got so lucky. Their sweet little faces with their big personalities tug at my heartstrings and drain me of all my energy at the same time!  No matter what the day or week brings, they are consistently brightening the lives of everyone around them. 

Sometimes I think I should take them out into the world just to bring some sunshine into the mundane moments. 

Exhibit A.  Our trip to the post office yesterday:

They wave so sweetly to strangers with a smile and blow kisses to them as we walk away.  How did they learn to be so loving?  And they love each other so much.  Today I snuck around the doorway to the play room to see them quietly sitting down "reading" a book together.

In the evenings they so willingly end the day with hugs and kisses.  Eric makes the most silly kissy face and walks back and forth between Phil, Lillian, and I sharing his kisses.  Lillian makes sure she gets to kiss both cheeks of each family member.  She taps her cheeks so we know to kiss her goodnight too.  At night before I lay Eric in his crib, he lays his head on my shoulder while we say our evening prayers.  He lets me hold him and hug him and cherish his sleepy little body.  It doesn't matter at that moment how our day was.  All that matters is that we still have each other. 

Hope everyone out there had a safe and happy Halloween!

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Things I Don't Want to Forget Thursday

I should probably start out by saying I don't want to forget this blog!  The kids have been such a joy this past year, I've really soaked up every minute (even the moments that have NOT been joyful).  But overall I do think that 2012 has been the best year of my life.

I don't want to forget how excited Lillian gets when she finds out she's going to ride the bus to school in the morning.  Or how she yelled "WOAH!" louder than I've ever heard her the first time she rode her therapy horse, Cody.  I don't want to forget how she runs towards the door if I tell her it's time to ride Cody, or see Grandma, or anything she's excited about.  I never pictured her running until it actually happened!

I don't want to forget how Eric lays his head on my shoulder when I carry him up to his bedroom just before naps and bedtime.  I try to soak up that time with his head nestled next to mine, giving his tired body an extra tight hug before laying him down.  I don't want to forget how he says "uh oh" any time we ask him "Where did ____ go?"  Or how he likes to pretend to sweep the floors with the broom that is twice his size.

There are so many little expressions and excitements I don't want to forget.  This has been such an enjoyable time with Lillian starting preschool and Eric becoming a toddler!  Their personalities are really blossoming.  And it's so nice to finally live our lives rather than spend each day waiting for therapists and sitting in doctor offices, although we still deal with the occasional orthopedist appointment for her scoliosis. 

I hear a boy waking up from his nap and see a sister trying to empty the much loved ballerina bandaids from their box. 



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A Very Long Lillian Update

I'm sorry these posts have been far and few between.  A lot has happened over the last few months and at the end of the day I'm so tired it's hard to find the motivation to sit down and rehash it!

Lillian is doing really well.  She went through some "terrible two's" during Eric's newborn stage and I think putting her in part time MDO might have made it worse (although at the time helped me keep my sanity).  She picked up some bad habits and was spoiled rotten by the staff, but thankfully she has returned to the sweet girl I knew the first 24 months of her life :). 

Right now Lillian is getting therapy 5 times a week.  She gets speech therapy twice a week, once in home and once through a private therapist.  She also gets occupational therapy, physical therapy, and developmental therapy once a week.  Even though we are consumed in therapy much of the week, we are also thankfully consumed in our social life as well.  I've joined a fabulous mom's group through the church we go to, and Phil and I also teach the 2 year old's Sunday school class every other Sunday.  I'm also part of another women's group at church that meets once a week, so Lillian and Eric get to spend 2-3 mornings a week with other kids their age at church.  The volunteers there are good friends of ours and the kids absolutely LOVE it!  Not to mention, it's been so good for me to get some adult interaction after 2.5 years of being so wrapped up in therapy and PWS. 

This spring has been so refreshing.  Lillian is finally able to navigate most playground equipment and I'm able to just stand back and let her run and play.  She climbs up the stairs, goes down the slides by herself, and makes friends along the way.  What a breath of fresh air that is compared to last year!  She's also been spending time on our family farm with my Father in Law.  My goodness does that girl love tractors!  Keep in mind her idea of a tractor is one with an enclosure and air conditioning, but nonetheless,  she has her grandpa wrapped around her little finger and manages to get in on quite a few rides bailing hay. 

When she's not hitching rides on tractors around the farm, you can find her with my Mother in Law checking out the hatching chickens/turkeys/geese in the incubator, or over at the neighbors barn petting the horses.  I think she's going to be VERY involved in 4H when she is old enough!

Right now Lillian is having a bit of a speech blossoming.  I wouldn't call it a "speech explosion" because like everything else with her development, it tends to be slow and steady.  She has started saying "hi" "mo" (more) and still says mama and occasionally dada.  She says "oh yeah" "hi buddy" "I awn that" (I want that) and "openit" (open it).  It's NOT always easy to understand her, but we've noticed these things she's saying now she has probably been saying for a long time, we just couldn't understand her.  She will imitate the sounds ssssss, ooooo, eeeee, wwww, ba, da, ma, consistently.  Inconsistently I can get her to do the p sounds.

I think the twice a week therapy has helped, as well as adding in some prompt therapy and some other methods that the private speech therapist has integrated into therapy.  Another thing that I'm now convinced has helped her speech blossom is adding B12 back into her supplement routine.  Before adding B12, I stopped giving her carnitine and coq10.  So currently she is only getting HGH and B12.  After a few days of giving her B12, she started to seem more in tune to what was going on.  She was able to match all of her puzzle pieces accurately, started saying more words (she was only saying no and mama before we started B12),  and she is now able to pick up new signs very quickly.  She's learned to sign horse, on, potty, and she also uses the gestures we're teaching her in therapy to help her with sounds.  At first I was really skeptical about the B12 being the connection to these new developments, but after her therapists went on and on about how mature she has been in the last few weeks and how she seems to be absorbing so much more and focusing better on tasks, I finally started to accept that the B12 had to be doing something.  If you ask her OT, she's like a completely different kid! She's also sensory seeking less and saying "no" less... which is nice.  If anyone has questions about B12, you're welcome to leave a comment with your email address and I'll answer any questions you have!  I do plan on introducing carnitine and coq10 back into the daily routine one at a time.  I'm wondering if one of those might lead to irritability, so hopefully I'll be able to see that clearly.

As for now during the summer, we're looking forward to lots of days spent at the pool, park, farm, gardening and traveling.  Our plans to build a house over the summer have changed and it looks like we might put it off another year or so.  We want to make sure we do everything carefully and with as little stress on our family as possible.  In the meantime we're just going to keep doing this...

(Sorry for the crappy cell phone pics!)

And last but not least, Running for Lillian 3.0 is in the works!  We have the donation page set up and are adding more runners as they commit.  If anyone is interested in Running for Lillian in their own home town or in the Indianapolis Marathon, please leave a comment or email me and I'll get the information to you on how you can be part of the big day!  All donations go to FPWR and the One Small Step campaign.  You can find the information here:

I can't promise I'll update this blog more often, but I'm certainly going to try to! And I promise to answer any questions :).


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