1p36 Movie Night Fundraiser is a BIG Success!!

A huge thanks to everyone who participated in our 1st annual 1p36 Annual Movie & BBQ Fundraiser! It was a great success and very fun! We had 133 people RSVP to the Evite - it was a huge party!

There was quite the crowd in our yard. Matt Lutz, our neighbor donated his bounce house, Jason's company-GetWellNetwork donated the money for the food and Monkey Joe's donated a free Bounce House party for one of our lucky guests! Thank you to all of our sponsors!

We started off the night with hot dogs, popcorn, lemonade and a big jumpy! The kids all loved it. Once it got dark, Jason set up his movie screen, we passed out movie size candy bars and everyone settled in to watch "Bolt" on the big screen! We even had a round of late night hot dogs.

We made almost $2000 in one night! In addition to our fundraiser - we have received numerous donations from many other family and friends including people from Jason's company. The generosity and support of all our friends, family, neighbors and co-workers continues to warm our hearts. We are very blessed to know each and every one of you.

The money raised will help fund the 3rd Annual 1p36 Conference that is being held in Indianapolis - next week on July 31, August 1 and 2. We are very excited to see all of our 1p36 family again and meet many new friends. We are continuing to raise money for both the conference and the brand new 1p36 organization that is forming.

For those interested in donating online via PayPal - please go to:

1p36 Deletion & Support Awareness Fundraiser Paypal Link

Lily & Friends Backyard Flix Fundraiser

BBQ Fundraiser Benefiting the 2009 1p36 Deletion Support & Awareness Conference!!!

Join us in our backyard Friday, July 17th for a night of celebration, yard games, food, drinks, smores by the fire and a movie under the stars.

Over 28 families from all over the US, Canada and Great Britain will be attending this year's annual conference for the 1p36 Deletion Support & Awareness organization this year in Indy!

All donations collected from the evening will go directly towards funding the conference at the Embassy Suites downtown July 31 - Aug. 1st.

Donations payable to: 1p36 Deletion Support & Awareness

Online Donations can be made through PayPal:

https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=6114971

Big Girl Lily..Almost Two!

The last few months have flown by for us! Many "Lily anniversaries" have come and gone since the last time we posted. The anniversary of our 1st hospital stay came on Valentine's Day. The anniversary of our 2nd hospital stay and her g-tube procedure came in March. Lastly, the anniversary of Lily's diagnosis came on April 7. It is hard to believe it has been a entire year since we found out that Lily had 1p36. It has been a very fast and event filled year.

In the year since Lily's diagnosis we have seen amazing progress in Lily's abilities. Lily's most recent accomplishment is her vision. In December 2007 Lily stopped looking at us. She had trouble focusing on things other than flashing light toys. It was devastating to us as parents. We wanted our baby girl to see us, smile at us, respond to us. In February of this year we were blessed with an amazing therapist who specializes in Vision Therapy. This therapy has changed our little girl. She is now looking at her brother and sisters. She smiles at us often. She follows toys more readily. She is focusing on the sign language we are trying to teach her so that we can communicate. She still has a long way to go as these moments of vision are brief...but they are there and we are thrilled!

Lily's gross motor skills have definitely taken a backseat to all of her eating, speech and vision accomplishments. In March/April Lily decided that she no longer wanted to stand. She no longer was interested in climbing up the step from the family room to the kitchen. She started throwing her head back violently each time we would put her in a position she did not like. She threw a HUGE temper tantrum at the place that fitted her for a gait trainer. (a special durable walker).

It only took me a month to figure out the problem...Lily's shoes were too small. Yes- it seems like a simple solution - but Lily's feet are really little. She had been wearing a size 4. When you press down on the shoe it seemed like they still fit. But with her orthodics...it must have been too tight. We got some new shoes a couple of weeks ago. She only increased to 4 1/2...but that was enough! She is much happier and our PT is relieved! We hope to have Lily using her gait trainer by this summer!

We are back to teething again - 2 year molars. These teeth seem to grow in the middle of the night...like 4am. Tylenol is once again our close friend. I make sure to give Lily her favorite blanket as often as possible - so that she can chew on it instead of her hands.

Also- this spring Lily went on several new adventures. I have been keeping her close to home this winter trying to avoid the nasty germs. But on Spring Break I took a leap of faith and took her out! We experienced all sorts of new things. We took Lily and her siblings to the Indianapolis Children's Museum, Monkey Joes (bounce house place) and Great Wolf Lodge in Ohio. Lily had a blast and handled all of the noise and over-stimulation very well.

Next Thursday our baby Lily turns TWO! What a wild ride these last two years have been! God has taken care of us thus far...so we are going to continue to put our faith in HIM and see what the next adventure will be!

***Jason and I continue to work on this year's 1p36 Deletion Conference. We are currently raising as many funds as possible for the conference. For more information about the conference or to register please visit http://1p36conference.blogspot.com.

***Lastly, I would like to ask for prayers for all those 1p36 families who have lost their children this past year. These are amazing families dealing with great pain and sadness.

2009 Scrapbook Extravaganza benefiting the 1p36 Support & Awareness Annual Conference!

On Saturday, February 7 we had a Scrapbook Fundraiser event to raise money for the 3rd Annual 1p36 Conference that will be held here in Indianapolis. The Conference will be July 31-August 2nd, 2009. The Conference is run 100% by volunteers and the funds used to put on the conference are from donations, fundraisers and sponsorships.

The Scrapbook Extravaganza Fundraiser was a HUGE success! We raised over $1700!! I am continually overwhelmed by everyone's generosity - especially during our current economic times. Many of these women have never even met our Lily and yet they opened up their pocketbooks to donate to our conference. We feel so blessed to have such generous people in our community.


A Heartfelt Thanks goes out to the following sponsors of our event:

• Jeanne Spaletto and Jill Sutton - Creative Memories Consultants - Donated all of their profits from the sales of scrapbooking supplies to the event. $500 came from their donation alone.

• McAlister's Deli - Donated Lunch - Sandwiches, Chips, Sweet Tea, Cookies, ice, plates, napkins and silverware.
  

• Starbucks - Donated coffee and pastries for the morning.

• Carmel Lions Club - Donated the space used for our event. We had 30 women sign up this year and we used almost every inch of space!

We are actively taking donations for the conference and looking for sponsors. Please contact me at julie@hungrydawg.com for any details including where to send donations for the 2009 1p36 Conference.

You too can have a Scrapbook Fundraiser for the 2009 1p36 Deletion Conference!

This Scrapbook Fundraiser is easy to plan and can raise a lot of money in just one day. You should be able to find community businesses willing to donate their space and products for this event. Try local Lions Clubs or Parks and Recreation areas. Some hotels may even be willing to donate if they have an off weekend...it just depends on the area. You can try to get Lunch and Breakfast provided by community sponsors. We charged a small registration fee - $30 for early bird sign ups and $40 for the rest. Since everything was donated we were able to keep 100% of the money raised for the event. We also had a small raffle of scrapbook items that generated a good amount of money as well. Creative Memories scrapbook consultants are fairly easy to find online and may be willing to donate their profits. It was nice to have their tools and product available all day for those who needed it. I have a nice registration form that you can use - we can just change the information. I also put together 2 boards of pictures of 1p36 children. One board was of Lily - for people who know us ,etc. The other was of several kids from our 1p36 Family. And there you have it! A fundraiser! :)

Please contact me with any questions - julie@hungrydawg.com

3 Months in the Making - Lily Climbs a Step!

Yehaaa! Another milestone met!

For the past three months Lily has been trying to scale the single step from our family room up to the kitchen area. What seems like such an easy task for the rest of us, was, and still is, a big challenge for Lily. She kept working at it and finally did it on Thursday of this week!

Many people have asked about Hippo therapy and how it is helpful. This milestone was met the day after we had Hippo. Our PT feels like Hippo has been very helpful and we have only been 3 times! With Hippo Therapy we have PT 3x per week and it has been wonderful for Lily's gross motor skills. On Wednesday in Hippo, the therapist had Lily standing on her horse! It is was like watching a circus act! Also at Hippo they had Lily climbing up onto mats and walking in a special walker. We are thrilled with this therapy and recommend it to everyone.

We are also adding another therapy to our case load. We just got approved through our early intervention program for a Vision Specialist. She will work with Lily on her visual tracking and attention. Lily still does not look at us very well and uses alot of peripheral vision. We are struggling getting her to sign and hope this may help. Our OT and ST were instrumental in getting this needed therapy. We start it next week!

Here is a video of Lily going up the step!

2009 1p36 Deletion Support & Awareness Annual Conference

The 1p36 Deletion Support & Awareness organization will be holding it's 3rd Annual Conference on July 31 - August 2, 2009 at the Embassy Suites in downtown Indianapolis, IN.

This is a wonderful opportunity to meet other 1p36 families and develop friendships that are sure to last a lifetime. Julie and I attended last year's conference was simply wonderful for us as we got to meet so many families that are just like us... with little angels sent to us from heaven. We are so excited about this year's conference, not only because it is in our back yard, but because we look forward to seeing our friends again and meeting even more!

See below the post the planning committee published on the Yahoo! Forum about the conference.

http://health.groups.yahoo.com/group/1p36_Deletion_Syndrome/message/17230

See below the link to the files regarding the conference.

http://health.groups.yahoo.com/group/1p36_Deletion_Syndrome/files/1p36%20Conference%20Information/2009%20Conference/

We encourage all 1p36 families to attend the event this summer. Lily cannot wait to see her friends!

Peace, J&J

Lily Starts Hippo Therapy!

Lily started a new therapy on Wednesday - Hippo Therapy! Hippo stands for "Horse" in Greek. Lily will be receiving PT and riding a horse each Wednesday morning bright and early at 8am! We are very fortunate to have one of the largest Hippo Therapy facilities in the country near our house. We are also very fortunate that they offer a fee assistance program where we only have to pay a small portion of the cost.

Lily absolutely LOVED it! The arena where they have the horses is heated to about 40-50degrees in the winter. Of course our very first therapy was on the day of a big snow storm - and I bundled Lily up in about 3 layers.

Hippo Therapy is supposed to help with both walking and speech. They are not sure why it helps with speech. They think the part of the brain that is stimulated by the horse is near the "speech cortex" and it gets stimulated as well.

Lily spent about 15 minutes on the horse doing 2 different positions. Straddle and Side Sitting. She was babbling and making sounds the whole time! Afterward she got to play in the PT room and she rode a big green horse like swing. She laughed hysterically and signed more each time it stopped. It was very fun.

We are up to 2 PTs, 1 Hippo, 2 Speech and 1OT per week and 1 Nutrition every other week. A Vision Specialist came out to our house and evaluated Lily this week as well. She will most likely qualify for this service as Lily is still having a lot of trouble with eye contact. 2009 is the year for intense therapy for Lily. Our early intervention program ends at 3 and we want to make the most of it while we have it and while she is approved.