myhungryboy.blogspot.com

Happy 2016! Okay...it has been a while, life has kept me and our family busy! In looking back at my last post, there is so much to catch up on. Back to work: It has been a big adjustment for me and for Max having spent his whole life together with me and then just a few hours away from me at a time, to the whole day, and negotiating the world around him. For me as well, it has admittedly been great to get back to adult time, using my brain again on other things than Max, baby stuff and just his medical needs. But, has been challenging to get everything accomplished that I need to around work hours! It is still a work in progress, but have found it very rewarding to be back in the grind again! Max full day Summer 2015: Max for the most part loves being out all day, he loved camp this summer, but did struggle to keep up with his peers during the traditional camp setting. After his summer school/special needs camp setting ended, he attended that regular Park District summer camp. Luckily he did have a 1:1 aide at his side, but still there were challenges since Max overheats in the summer and summer is "hot". So finding ways to cool him down often were a struggle. Max is not yet a unassisted swimmer, and the camp he attended would not allow his aide in the pool with him, some rule they had?? and Max was subjected to stay in the Kiddie pool area, water up to his ankles :( - I sent tons of pool toys and lots of kids wanted to share and play with him, so that helped, but again not very ideal, so, looking at new options this summer! Kindergarten 2015/2016: What a transition!! I imagine for any kid it is, but for Max, it seems that it rocked his world. He left his very comforting setting of Pre-K, where there was a 3:1 ratio of kid to adult, because of his special needs setting, where he flourished over those two years. Since he was doing so well, we hoped that he could continue in Kindergarten without a 1:1 aide since he was going to be receiving all his therapies, including, a social worker and a lot of special needs minutes, that would help him negotiate the bus, playground, getting to his class etc...well, that was a HUGE bust! What we found, is that the world around him is way too much for him to just be thrown in. Because he is cognitively behind, combined with severe fine motor delay and still Physical delay, the fast pace and requirements to self negotiate getting off the bus, where to go, putting everything in your own locker, getting out your own snacks, potty time on your own, and moving at a fast pace...then sitting at desk, with math, reading, and Max not being able to write yet....you can see where this is going, one big fat MELTDOWN in Max's system!!!!!!!!!!!!!!!!!!! After many emails, meetings, phone calls, emergency IEP meetings, Max received a 1:1 aide at school and the world of Max is back in order (for the most part). But, overall, he loves school, they love him, accommodate him, and are really helping him to flourish again. I can't say enough about the school setting we are lucky enough to be in, with very supportive staff around us. We have no idea where we would be without them! It just took a few months to really sort out his needs now and moving forward. Max's Medical World: Max is really doing so well, we are so happy and fortunate. Others that share this Syndrome, as it is a spectrum syndrome, don't always fare as well as we have so far. Yes, Max struggles and fights his little heart out with our help to be walking and talking and running, but is the happiest most loving person I know and has an amazing sense of humor! He has lots of doctors appointments still and never complains. Scoliosis is still a battle, and we are so far holding at about 20 degrees, give our take, but may be heading down the road soon to a night brace he will need to sleep in to hopefully keep it from getting worse...since they grow in the their sleep! Speech is still an issue, and although he is very verbal, to the point of never shutting up, haha, he has officially been diagnosed as a person who stutters. So, we will continue with his therapies to manage and hopefully help him past this if that is possible. As of right now, his Sleep Apnea is at bay with the removal of his tonsils and adenoids, but we are always clinically watching him, to make sure it does not re-occur. Epilepsy is still something we are always watchful for. Max's EEG's show irregular brain activity, but he has never as far as we know had a seizure to date. His results show he is a candidate for seizures, but are not treating it since he may never have an occurrence. So, we watch and hope it doesn't occur, and like with everything, we will deal with it, if and when we need to. Hope for the Future! Steve and I are always working to stay positive for Max and for ourselves that there will be treatment for the biggest feature of Prader-Willi Syndrome. His Hunger. That is why we both work tirelessly to raise money through our One Small Step Walks each year along with now our 2nd Annual Live Life Full Gala for Prader-Willi Syndrome! There has been so much research and now REAL clinical trials in our community that show promise. It will be a long road, and lots of money, but we just hope that in Max's lifetime, it will make a difference for him. Disneyworld 2015: This past fall we took our 2nd visit to Max's specialist in Florida, in Gainesville at the University Of Florida, which happens to be less than two hours from Disneyworld. So, Steve and I took Max to the Magic Kingdom. We were prepared! I packed lunches, snacks, drinks, so we would not be freaking out trying to find food for Max's diet in the land of sugar and fat. We had a letter from his doctor allowing us to use his stroller as wheel chair pass and give us a special needs pass to not be subjected to waiting in lines when the heat was too much for Max. What a help that all was! It was super hot, but we saw Mickey and his pals put on a how at the Castle, we went on all of the roller coasters...and learned that Max is a total daredevil! The bigger the roller coaster, the happier he is! Over and Over again! Mom and Dad are way more of a wimp than our 5 year old child! It was a total blast of a day and we all came away exhausted! And yes, Max is already asking when we go back to see Dr. Miller because he knows a day at Disney comes with the package :) - he learned that fast! So, if you are still here with me after this long post since catching up is hard to do and keep it short...It's been a crazy year since I last posted, with ups and downs, but we are still hear, still fighting for our little main man, and are blessed with a wonderful family.