Fall/Winter Update!

So, it's been a while, life gets so busy, sitting down to write sometimes gets away from me! Max is back in school and is just loving it. He is in his last year of pre-school, which I cannot believe and next year, Kindergarten! Wow! To update on my last post...EEG update: Max had a follow up with our neurologist and yes, he does have potential for epilepsy and in children with PWS it can be more common. In a small study about 25-30% of kids with irregularities did actually have epileptic occurrences. This is much higher than in the regular community, which is just a few percent. So, that being said, we will NOT be medicating at this time, just a wait and see game. The doctor has just prepared us as to what it would look like if it did occur and what to do in that event along with getting in touch with her to see how we proceed. So, hopefully, nothing ever comes of it! Fingers crossed! Potty Training update: Max is potty trained!! Woot Woot! Still diapers at night, but day time is diaper free. What a difference. Scoliosis Update: Still holding strong at around 20 degrees, which is not fabulous, but still keeps us away from bracing or casting his back. We still work on core strength through physical therapy and Hippo therapy (physical therapy using a horse!) I would say that Max's favorite day of the week is Saturday, when he gets to go to the Barn and see his horse, Oreo (if you can guess, he is black and white) and take his ride. He often gets to groom him and walk him to or from his stall. Max has become a bit of a mascot there. He spent a few weeks in there summer program, 4 hours a day for about 3 weeks and got to ride the horses, learn to groom, take nature walks, learn some yoga, have art therapy and took the time to learn everyone's name who works there and now walks through the Barn like, Hey Norm, Hey Joyce etc...it is truly hysterical and amazing that he really knows everyone there. Prader-Willi Association, Illinois Chapter: Katie and I are still leading the charge here in Illinois. We are working towards a partnership with a group called Muddy Monk, that is a running group, who runs trail runs throughout the year. He is a dear friend of a mom whose child has PWS. He has over the last couple of years dedicated one run to PWS and donated their money raised. He has asked that we talk about making an official partnership in 2015 with their 5 runs to make PWS their full time charity of choice. We are really looking forward to seeing where this goes! That along with continuing to bring our community together, we hope 2015 is another great year. The big Event!! The first ever Live Life Full for Prader-Willi Research Gala in Chicago! Some NY moms have created an amazing event called Live Life Full for PWS and now it's time to follow in their footsteps and add Chicago! So mark those calendars! April 18th, 2015, House of Blues, 7pm! Live music, pass appetizers, food stations and amazing auction items will be featured to make this a night to remember. It is a bit pricey, $150.00 per ticket (adult only event), but it's a night to get dressed up and live it up, while getting to support and give back to our PWS community! We feel that it is time for PWS to get noticed out there in the world and start to compete for charitable funds so badly needed to find a cure for our children's hunger, so that they can live a "full" life! So excited!!