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.

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.

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.

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 :)

Fall/Winter Update!

So, it's been a while, life gets so busy, sitting down to write sometimes gets away from me! Max is back in school and is just loving it. He is in his last year of pre-school, which I cannot believe and next year, Kindergarten! Wow! To update on my last post...EEG update: Max had a follow up with our neurologist and yes, he does have potential for epilepsy and in children with PWS it can be more common. In a small study about 25-30% of kids with irregularities did actually have epileptic occurrences. This is much higher than in the regular community, which is just a few percent. So, that being said, we will NOT be medicating at this time, just a wait and see game. The doctor has just prepared us as to what it would look like if it did occur and what to do in that event along with getting in touch with her to see how we proceed. So, hopefully, nothing ever comes of it! Fingers crossed! Potty Training update: Max is potty trained!! Woot Woot! Still diapers at night, but day time is diaper free. What a difference. Scoliosis Update: Still holding strong at around 20 degrees, which is not fabulous, but still keeps us away from bracing or casting his back. We still work on core strength through physical therapy and Hippo therapy (physical therapy using a horse!) I would say that Max's favorite day of the week is Saturday, when he gets to go to the Barn and see his horse, Oreo (if you can guess, he is black and white) and take his ride. He often gets to groom him and walk him to or from his stall. Max has become a bit of a mascot there. He spent a few weeks in there summer program, 4 hours a day for about 3 weeks and got to ride the horses, learn to groom, take nature walks, learn some yoga, have art therapy and took the time to learn everyone's name who works there and now walks through the Barn like, Hey Norm, Hey Joyce etc...it is truly hysterical and amazing that he really knows everyone there. Prader-Willi Association, Illinois Chapter: Katie and I are still leading the charge here in Illinois. We are working towards a partnership with a group called Muddy Monk, that is a running group, who runs trail runs throughout the year. He is a dear friend of a mom whose child has PWS. He has over the last couple of years dedicated one run to PWS and donated their money raised. He has asked that we talk about making an official partnership in 2015 with their 5 runs to make PWS their full time charity of choice. We are really looking forward to seeing where this goes! That along with continuing to bring our community together, we hope 2015 is another great year. The big Event!! The first ever Live Life Full for Prader-Willi Research Gala in Chicago! Some NY moms have created an amazing event called Live Life Full for PWS and now it's time to follow in their footsteps and add Chicago! So mark those calendars! April 18th, 2015, House of Blues, 7pm! Live music, pass appetizers, food stations and amazing auction items will be featured to make this a night to remember. It is a bit pricey, $150.00 per ticket (adult only event), but it's a night to get dressed up and live it up, while getting to support and give back to our PWS community! We feel that it is time for PWS to get noticed out there in the world and start to compete for charitable funds so badly needed to find a cure for our children's hunger, so that they can live a "full" life! So excited!!

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!

Update Post Surgery of Tonsils and Adenoids

Well, unfortunately I have no amazing report about potty training. A work still in progress! However, great news about his surgery. First of all, the results came back from his sleep study showing SEVERE sleep apnea especially in his deep REM sleep cycle. The doctor basically said, no discussion, they need to come out! So, we took his next available surgery date because we were then so worried about him sleeping and breathing. The surgery went really well. The surgery took a little longer than expected because the tonsils and adenoids went deep into his tissue. The doctor felt that since this was the case, we would hopefully get some good long term results with all of that being gone. Hopefully since there was so much obstructing his breathing, it would really clear out. The first day, or half a day after waking from his surgery was tough. The expected having a hard time swallowing, not wanting to drink anything because he had to swallow was in full swing. He was so sleepy all day. Besides the anesthesia, they gave him morphine upon waking to keep him comfortable and then on pain medication overnight. By late afternoon he started to really get hungry and the nurse said he had to have a certain amount of liquid before the soft foods could begin. So, we worked hard getting some cold juice into him. We tried lemon ice, popsicles, jello, he wouldn't take anything but apple juice. Normally, we eat no carbs or sugar, but I told him he should take advantage of this moment because he could eat what he wanted for soft foods. Of course, he chose pancakes (plain) and macaroni and cheese! I couldn't believe he inhaled them just about 8 hours after surgery like nothing was up! From that moment on, he started to feel better and never expressed any pain or discomfort. With PWS, they say that these kiddos and adults feel light touch pain excessively, but often do no feel deep pain at all or not to the degree they should. So, whatever the reason he had only soft food for two weeks per doctors order, but minimal pain meds and the best recovery process I have ever seen. To top that off, his snoring is completely gone and his energy level during the day has sky rocketed! He must be getting much better sleep and breathing better in general throughout the day. I feel awful that he was suffering silently and that we did not know, but so thankful we did catch it and could help our little man. In 3 - 6 months we will another sleep study to verify that his apnea is either gone or better to some degree. It may still be there. If it is we will deal with it, but for now we will take the victory. Love you Max :)