myhungryboy.blogspot.com

Spring 2017! Wow, it's amazing how life just flies by and you realize it's time to catch everyone up on Max! It is amazing how much he has grown physically, but also just from little kid to a Big Boy as he likes to say! He is rounding out his year in 1st grade and just loves his school so much! We were lucky to receive Max's 1:1 aide again this year and are set to have her again next year. Max's Team at school could not be more amazing. They really have his back and his best interests in their Heart. We are so fortunate to be where we are, as not all schools feel or work this way. They really set him up for the best success he can have academically, but also help him negotiate his day and his emotions/anxiety, which can really fluctuate. One thing that has progressed are some OCD/Anxiety Behaviors both at school and at home. He gets a lot of support though at school and we have introduced some therapy to help him outside of school and just in life, since life doesn't come with Picture Calendar as it does at school :) - Max also receives Tutoring 2x weekly for reading/math along with his Occupational Therapy and of course Hippotherapy, his Physical Therapy on his Horse every weekend! It's one of his favorite parts of his week. Max's Summer: Max will be attending JCC Apachi Day Camp through an organization we found called Keshet. It has been a huge game changer for our family and Max's experience to get into a traditional camp setting with his peers. We signed him up for Camp through Keshet, who provides a 1:1 aide for him, so that he is in a "regular" group and has someone there to help him keep up, attend to any medical needs he has, such as overheating, making sure he is not in the pool alone since he has potential for Seizures (thankfully he has not had one!). He still has trouble dressing himself, and is NOT a self swimmer, so needs assistance in the pool and with general activities, just to keep up with his peers. They are also there to attend to his diet restrictions, and keep him on track with rules set from home. Speech: Speech continues to be a struggle for Max. He is completely verbal, thankfully, but has been given an official diagnosis of a "Person that Stutters". Some days and times are worse than others, it can vary based on emotion, if he is tired, but it is something we are working on with him, so that he can best negotiate that and hopefully an emotions or frustration that can come with that. Max's Medical World: Max is still doing really well, on the higher end of the spectrum of this Syndrome, we have been very fortunate in many ways, even though we are chalk full of things to keep us on our toes! Scoliosis is still a battle, which thankfully kind of just hangs at a mid range curve, not enough for bracing or casting at this time. Sleep Apnea seems to have subsided and has stayed away! Max struggles with GI issues though. With his low tone and food taking a long time to move through his system, we are always working on the best foods and supplements to help his body from backing up or getting a blockage, which can be deadly for him. We have only had (1) trip to Urgent care for potential blockage, which thankfully was NOT blocked, but his whole intestines full, so intervention was required. He as usual handles it all in his stride. Hunger... One of the biggest features our PWS kids deal with, is there, but not sure we have reached the full Hyperphagia phase, the insatiable hunger. Max definitely is ruled by food. He definitely does NOT know when he is full. However, we can still use diversion methods, and he does not seek or try to steal food at this time. We are fortunate not to have to lock up all of our food and refrigerator in our house to keep him from sneaking or seeking. He loves his rules and seems fine to obey them. Dr. Miller! Oh thank you for Dr. Miller! Max is a rule follower, especially from his doctors. He used to like to sample from others plates, asking everyone for a taste, ways to get something not his. Rules have been set that there is NO SHARING, and he now will NOT share since the rule has been set! He also loves his diet! He loves that he eats Healthy! He is very proud of himself and that he eats better than everyone! His favorite meal when we go out, is a Chopped Salad! Phew, lucky us! LOL! We have our cheat meals or snacks, like pizza every so often, or cake at a Birthday Party, of Ice Cream on a Hot day...but we live by our diet, which is a Modified Paleo Diet. His is more satiated, has better behavior, better emotions when we stay on his diet. Things kind of go haywire when we get too far off track! One Small Step for Prader-Willi Syndrome! I can't believe we are entering year 5 on June 24th! https://onesmallstep.fpwr.org/dw/users/heatherosterman/deerfield2017 - I can't believe it. We live on Hope for the Future for Max and that if we keep up the fight, we will see something that can effect his life, in his lifetime, not only for those int he next generation. There is a 5 year plan set in place, https://www.fpwr.org/wp-content/uploads/2016/07/PWSResearchPlan.pdf that us parents are all working to help accomplish and see what can attained for our kids! It is very exciting right now in our community. Loss: It is with great sadness that we have lost my Grandmother, Max's Great Grandmother, his Mema this past March 2017 just having reached her 104th Birthday. She lived a blessed and long life. Max and his Mema were best of friends and shared a great love for each other. Max is just now learning about real loss and is struggling a bit with processing it, but is really doing amazing. He is an old soul, and talks about having her in his Heart forever. Max the Mayor: That is what Max is called most everywhere we go! Mayor of his school, Mayor of the Barn where he rides, just about everywhere he goes, he ends of talking with everyone and they just say, there is something about that child! He genuinely cares about people, is interested in them, and has developed a great sense of humor! He can get set in his ways, and OCD can take over in many ways, but then he is happy to go wherever we go, whenever, loves to travel and just goes with it! Spring Break 2017! An example of his "go with the flow" that astounded us, was that we traveled to LA to see Uncle Scott and Aunt Samantha! It was over a 4 hour flight, a 2 hour time difference, meal times were all off, sleep schedule was completely off, but he seemed to just be happy as can be the whole trip. Yes...I carried with me, endless supplies of snacks, drinks and things, so no matter where we were, I was prepared, but no meltdowns, just Happiness to be wherever we went. He was pure joy, and we all had a blast on our trip! Max, he amazes us every day. And he is our true blessing and miracle.