2018 Update!

As you can all tell, life keeps us busy and I find I don't settle down to update on our precious Max :) - As usual, Max is still his happy, wonderful self! This past year, has been one of growth for Max, both physically, while he keeps sprouting up (with the help of his Growth Hormone shots!) and emotionally/academically. I can't believe I didn't update on Max while is 2nd Grade, and here we are in 3rd! Last year while Max still has his 1:1 aide by his side to help him, they are working on building his independence. In 2nd Grade, it was more about getting off the bus on his own and meeting his aide on the playground. Going to the lunch room with his peers and getting himself settled and starting to negotiate his own lunchbox. Walking in the halls alone if he was going to see a specialty teacher (i.e. Speech or OT). Eyes were always on him, but just giving him more space to realize what he can do, and know he can move towards independence where appropriate. Summer: Max loves summer camp! He attends a traditional Day Camp through an organization called Keshet, a non-profit, that sends him with his own aide, to make sure he can fully immerse himself fully with his peers, while keeping him safe. H still needs food safety, as he is on a very strict diet, and camp has a ton of opportunities for food outside of his boundaries. He is also not a self swimmer yet, and needs someone in the water with him, but has improved a great deal. His gross and fine motor still need a lot of work, so he gets help to keep up with all the physical activities along with overheating, so needs someone looking out, in case he needs to get out of the sun, and into some air conditioning. But, it was a great summer! 3rd Grade: 3rd Grade has upped the ante. 3rd Grade in general changes for all kids, with more difficult academics, and more independence is expected, and things move pretty fast. Max...doesn't move very fast. He still has his 1:1 aide, but more limited, as he is now pulled from his class and goes to his Special Education Resource Room much more. His processing delay has proved to be even more than we thought, so he really needs his own education plan more than ever. Max is managing his independence with getting around the school, on and off the bus, the lunch room, but academically, that push has brought out some emotional outbursts and undesired behaviors, along with a lot of crying in school. It is breaking our hearts for Max, but we know, as in true Max fashion, he WILL overcome and thrive. He just has to process this change. He needs time to gain more confidence in his abilities, although different from many of his peers, that he can and has to participate. Because school, people, surroundings move to fast for him, he can "check out" of the situations and then feel "bored", as he puts it. It is proving a challenge right now for him and his teachers, but I know he will get there with the amazing team he has. One thing I know, is that he could not be in a better place, with better surrounds that really care about him. You can't ask for more than that, so we are so grateful! Max Medical Update: He is doing great! Scoliosis: We are hanging in there at around 22-24 degrees. Not great, but not the worst. We made a trip out east to a PWS Orthopedist, to be sure we were doing everything we could for him, to keep this at bay the best we can. He confirmed that if we had not brought in ALL of his X-Rays, he would have said, we should start to brace him with it creeping up to 25 or more degrees. BUT...since he has been holding there for so long, we need to be diligent about his check ups because it's that growth spurt that can put him over the edge. So, wait and see. Speech: He is really coming along! He is completely verbal, but still battle a bit of stuttering. Depending on if he is feeling anxious, tired, upset, etc...it can vary on the amount. BUT...it is much improved! Sleep Apnea: it's been so much better since his surgery, although he has taken up snoring again, a bit, so keeping an eye on that and perhaps another sleep study will be coming our way soon! So, TBD! EEG's: Max had a follow up EEG this summer since he was having some random memory issues and confusion at the end of 2nd Grade, so to be safe, we made sure it was not that he was not having any seizure activity we were unaware of. So far, so good! GI Issues: With still having that 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 thankfully still only had (1) trip to Urgent care for potential blockage, and he 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: It's coming up on Miller Time! Our annual visit to see his specialist in Gainesville, FL at Shands Medical Center. She is the leading Endocrinologist for Prader-Willi Syndrome, Period. She manages his Medical Treatment. She gives him a full check up, from head to toe, reviews it all, everything I talked about above. We talk about his Mental Health. His issues in school, his emotional well being, of of course his food consumption...his weight...his diet...his meds...you name it, we cover it at this meeting. It is difficult to travel so far for a doctor, BUT, we would travel the world for Max and his well being. At least it's less than 2 hours from Orlando, land of fun! So, with each trip, we take in a bit of fun in the sun, and Max could not be more happy about our trips to see Dr. Miller! So...without writing a book, there you have the last year in a nut shell! As always, a lot going on, BUT, that kid...I tell you, he is simply a joy and our blessing. We would do anything to take away his hardships, but NEVER EVER, would I change him. He is pure love and joy and you can't ask for more than that.