LA 2017!

LA 2017!
LA 2017!

Friday, June 5, 2015

Spring Update!

I cannot believe we have made it through the horrible Chicago winter season and summer is just upon us! Well, almost...it's June 5th and its freezing out :) Max has his last day of Pre-School on June 12th and it is on to summer programs with the next step Kindergarten! I have started back to work full time (around Max's hours of course) so for the last few months Max has his morning pre-school program and then goes directly to Day care. I was so worried about how he would fare with such a long day, being away from home all day etc...but he has been amazing! The one real struggle I will admit we have run into is food, not because of Max. The day care we sent him to, is at the Jewish Community Center, which is amazing and has really stepped up in addressing his needs, however they are all Kosher. So, I was not able to prepare and send all of his food and had to send Kosher compliant packaged items for him mixed with finding what he could eat on their menu along with figuring out portions etc...it has been challenging. In not being able to regulate that all, Max has put on a bit of weight (just a few extra pounds, but on a little guy it was too rapid), so we are working on taking that weight off and working through adjustments at the JCC on portion control. It's no one's fault, just difficult for the staff to understand truly how little food he needs and that he will ask for more etc...he is so wonderful about knowing he only eats what Mommy says or sends, but won't say no to extras or be shy to at least ask for more! :) We are very open with Max about his "special tummy" and that his body needs the food that work for him and that is not always what the other kids get to have. That he has his own special diet and that those foods can be so yummy while doing good for him! We do of course allow for some special treats, but just try to keep it to a minimum, because it's a slippery slope! I know that from always trying to eat better and diet myself! With Steve and I being at work, Max is scheduled for a full summer! He starts his summer school program through school just after school ends, where he still receives his therapies for 5 weeks. That is in the morning, but they offer afternoon camp sessions following school, which Max will participate in. After summer school ends, Max will be attending good old fashion summer camp at our local Park District, but being where we live has such amazing special services (at no charge!) Max will be receiving a 1:1 aide during that time at camp. This is to make sure he can keep up, be safe while swimming, climbing etc...since he has fine and gross motor issues. They will monitor his food (but I get to send all of his food, yay!), and make sure if he has any medical issues, such as body temperature spiking, overheating, possible seizure activity( which has never happened thank goodness, but he has the potential for seizures) and overall well being. Next stop will be Kindergarten. He will be starting a new school, our official home school where he will be for his Elementary school career. I have signed him up for Extended Day Kindergarten since I will be working and by keeping him at this home school he will receive all of the accommodations he needs set up through his IEP (Individual Education Plan). So, that will be a win/win! Summer/Fall Travel: Steve, Max and I have traveled quite a bit with family. We have been lucky to take wonderful family vacations, but not with just us three! Max has his upcoming 1 year annual visit with his Specialist, Dr. Jennifer Miller, in Florida. She is the leading Endocrinologist in Prader-Willi Syndrome and has hundreds of kids she watches over. She leads many conferences and is a wealth of knowledge and hope for our community. We realized that even though in Chicago, we have wonderful Children's Hospitals, no one there really understood Max's condition and we had to fire a few doctors. So, why not just go to the best! She is amazing, and works wonderfully with our pediatrician, who is a big advocate of Max's. We are thrilled! So, short story long....haha...we are heading down to Gainesville in early Sept to see her, so are making a small family vacation with Max to Orlando to see you know who! Max tried last year to meet Mickey, with success, but much much horror and lots of crying when he realized how big he was in real life! Since then, he has asked to try again and this time he won't be afraid and really wants to see him again. So, we have traded a week of our time share to head down to Orlando for some much needed family bonding and fun in the sun with our main man :) Scoliosis Update: Max's curve has gotten slightly worse, up to 23 degrees. I am working on getting his X-Rays and sending them off to the East Coast to the leading PWS orthopedist in our community for a second look. Our doctor here has PWS experience and is very knowledgeable, but is very cautious and has a wait and see approach. We are still within range to "wait and see", however, in talking with other PWS parents, I feel that a second opinion in the matter would be advisable, in case getting a bit more aggressive may be needed since we seem to be on a slow curve getting worse as we go along. The big Event!! The first ever Live Life Full for Prader-Willi Research Gala in Chicago at the House of Blues! Well, we had a very successful and wonderful Gala this past April. Only the second city to have a Gala or event this large for Prader-Willi Syndrome! We had over 230 people attend the event, a great live band, great food and drinks and live and silent auction prizes. We raised just shy of $100,000! We are looking forward to next year, but first we are working on our 3rd Annual One Small Step Walk for Prader-Willi Syndrome coming up October 24th! That is our fun, family friendly, free event to raise money and awareness. So, our community is very busy always fighting for our kiddos! Prader-Willi Association, Illinois Chapter: I am still the president of the chapter and am still working on community relations and fundraising. Our chapter has partnered with a trail running group called Muddy Monk, who has a dear friend, who child has PWS. Once a year, they do a run for charity, a big event and now have chosen PWS as their charity. This year, we had a booth at their event, helped them with their fund raising page, promoted the event and it was a great event. It brought so much attention from those from other walks of life, who would never had come to one of our events and were eager to learn about PWS and meet Max and other families who were there. We hope to continue that relationship for years to come! Hippo therapy! (Physical therapy on a Horse): Max is still loving his weekly outings for Hippo therapy. He has been there for about 3 years now and it has been so amazing for him. He is really a part of their community there and he is so loved there! Unfortunately he horse he rode for over two years, Oreo, passed away due to old age and sickness that came on suddenly, we have had to overcome that loss and move on to another horse, named MJ. We were honest with Max and he did handle it well. He is starting to bond with his new buddy MJ. Art therapy: At the same facility where Max rides his horse, they also provide art therapy. We have been lucky enough to get a partial scholarship for Max to take an hour session right after he rides his horse to have a one/one art lesson, where he gets to work his fine motors skills along with working on his emotions, making decisions, and becoming more artistically expressive. He has really grown a lot through his sessions. He actually talked about Oreo in art as they talk and make projects together, write stories etc...and he seemed to express some of what he was feeling about that loss. It was very interesting and good for him to have that other place to express himself. I like to call it therapy through Art. Well, that I think was long enough of a read for everyone! Thank you for taking the time to catch up on our little family and our wonderful son. He is our inspiration each day to be better people, better parents than we thought we could be. It's not hard, when your fighting for a guy like him. He is filled with sunshine :)