Spring/Summer Update!

Sleep study to make sure Apnea has been corrected from his surgery: Again, what a trooper he is, rough night, but he handles himself like a champion. It looks like Max is doing great and his sleep apnea although is slightly still there, he is within the levels to let him alone, so no C-Pap machine to sleep with! Yay for Max! (and us, I couldn't imagine how that was going to go, asking him to sleep with a machine over his face!) We will continue to watch him clinically and be sure to get him back in if things start to decline. They did however pick up some "epileptic activity" on the scan, so now we go in for a full EEG to make sure it was just a blip, and means nothing, OR it means something and we deal with that. PWS is always keeping us on our toes! Update on Max's scoliosis check: Well, he started at 22 degrees, went down to 15 degrees, now up to 19 degrees...what does it mean, we just keep watching and hoping he stays under 25 degrees, or we have to consider a brace or casting to help it reverse and also keep from getting worse. We will cross that bridge if we get to it, but here is hoping we never reach that bridge! Potty Training: We had a Passover Miracle in our household, ha! I went to an official special needs Potty Training Seminar and learned some great tips, and third round of potty training, we have success! #1, not #2, he saves that for his diaper, but major progress! No diapers other than when he sleeps, I will take it for now! Think of the money we are saving on diapers, wipes, butt paste and diaper pail bags! Holy moly! Max's Birthday: Our little man turned 4 years old May 20th! I can't believe it! He honestly makes us smile and laugh everyday. He truly is the happiest boy in the entire world. I wish to god that he did not have PWS, but I am not sure he would be who he is if he didn't. It is a part of him, not who he is, but it contributes to him. Would I feel so absolutely fierce in my love for him, to protect him, to make his life the best it can be at all costs. Probably, but who knows. He is our only child, so I have no comparison, but it is the only love of a child we know and I wouldn't change it for the world. On a fun note, he got lots of presents, a homemade awesome swing made by his Daddy and Papa Warren, hanging from our tree in our backyard and he loves it. And a huge trampoline that the family pitched in for, so Max can get exercise. He loves it, but seems to enjoy me jumping and it throwing him in the air, so currently I am the one getting my exercise! Fishing: Max's Daddy is a big fisherman, so is prepping Max to get into it. We got him his first fishing gear this year for his birthday, he was so excited! We went fishing on Memorial Day and he had so much fun, caught a few fish and played with all of the worms! I was so grossed out, but as they say boys will be boys! One Small Step for Prader-Willi Research Walk: It is coming up June 28th and we are in full swing with preparations! I can't believe it has been a year since our first walk and we are getting ready for our 2nd. Time definitely flies. We hope to have a great turnout again and raise some money for Max and all people living with PWS! It should be such a fun day! Here is my link if you want to check it out! onesmallstep.fpwr.org/dw/users/heatherosterman/Deerfield2014 PWS, Illinois Chapter: I am still on the board as President and love working to make our state better and raise awareness and funds for our kids to have support in this area. For the families to connect has been so amazing. We had our Pins For Prader-Willi Bowling Event and a had a lot of PWS Families turn out. The kids had so much fun, and it was great to hang out with other parents and get to know them. For those who are following our updates and adventures, thanks for caring about us and I will do better to update!