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 :)

The Good, The Bad and The Stinky!! :)

Happy 2014! Just wanted to wrap up our 2013 with a little update. Max is doing great, but a little hiccup in his normal restful sleeps. He started lightly snoring (which is uncommon for him) and then it got progressively worse. He ended up getting a horrible cold in December, so I called the Endocrinologist because he has not had a sleep study for over a year and I was worried that with upping his dosage of Growth Hormone, his adenoids and/or tonsils were getting enlarged and impeding his breathing at night, then the cold making it much worse. He was snoring like an old man! LOL! So, we set up a sleep study, met with our Pediatrician regarding his cold and to take a peek at his tonsils and adenoids. His tonsils look okay, but he thought possibly his adenoids were enlarged. So December 22nd we had our sleep study, which always is such a tough night for Max. He is so amazing with all the "stickers" they put all over his head, and body, belts around his stomach, but when it comes time for the sticker under his nose (first time for that one now that he is over 3 years old)and the nasal cannula (fancy word for tube, it's that clear tube like thing that runs behind your ear and through your nose NOT for oxygen, but to monitor his breathing through his nasal passageways)the freak out begins! Each year (this is our 3rd study) it gets better, but how do you explain why it's there rationally to a 3 year old. He whimpered and cried, but this year only pulled it out a few times during the night, and really did amazing considering. I just got the results and there does show some abnormalities in his deep REM breathing and signs of mild sleep apnea. So, Monday we have our first ENT (Ear, Nose & Throat) appointment to review the results, have a check up on those Adenoids officially and tonsils and figure out where we go from here. I know it's pretty common to have them removed, it just sucks he has to go through another thing, and add yet another doctor to his pile. He is an unbelievable trouper though. I took pictures for him of the sleep study, so he could see and understand what was going on. He smiled for the camera even though he was miserable and now loves looking at the pictures of his "sleep study" and how brave he was! Good or bad, Max loves Doctors and Nurses since they pay him such attention. We play doctor at home, so he loves when they check his heart, ears etc...he thinks it is such a great game! :) To top it off, Steve and I have been crazy sick all of winter break (thank goodness Max cleared his cold and didn't get our stomach flu!) so we just hung around all winter break, which leads me to the STINKY!! Haha! Potty Training! It's our 3rd try and I am doing hard core, no pants or under in the house. Now that he is a bit older, he just doesn't go that often, so it's hard to figure out a schedule. He also doesn't know when he is going or doesn't want to stop playing to sit on the potty. All typical stuff. So, we are on day 9 I think and have made some progress, but definitely not there. At home, we just do no diapers, and when we go out, Pull Ups and just don't stress on having to get to the potty in time. Not to gross anyone out, just make sure you cover up furniture and prepare for pee and poop on the floor, furniture and his clothes or yourself! I swear with all the medical stuff we have had to do with Max, Feeding tubes, hospital stays, this has been the hardest for me! Hard to believe, and maybe my memory is now fading on the crazy stuff of the past couple of years, but I HATE HATE Potty Training! Hopefully my next report will be a HUGE Success Banner!

A Fall Update!

Wow, it has been a while since I have been on here! Life gets so busy so fast! It has been a great fall season. Max is loving school so much. When he turned 3, he was ousted from Early Intervention and the state support we got for his therapies. At that time, the school district at that point must take him in to be sure he gets what he needs to perform at school, physically, verbally, socially. So, through the school system, Max goes 5 days a week, 2.5 hours per day. He is loving it. His social and verbal skills have improved so much! He is starting to talk up a storm! I can see that his mouth cannot keep up with his brain, haha! He still has a lot of balance issues and core strength issues, but the school is working to help and support him. We do run into food issues at school in that they have special treats from time to time rather that just letting each child just eat their own snacks sent by the parent each day. I know food is a part of the social world we live in, but it is so frustrating. I just wish school was a place where food was a non issue and safe place for Max. It isn't too often at this point, but I know each year it will get worse. One day at a time... He is loving his Hippo (Horse) therapy so much! His favorite day of the week is Saturday when he gets to ride the horse "Oreo" for half an hour. He has so much fun and his core strength even though has a ways to go has improved so much! Max's syndrome has a side effect for many kids in having early onset scoliosis issues because of their low tone. Max is just 3 1/2 years old and already had 22 degrees curvature of his spine. Just 3 more degrees and casting would be necessary. He held there for about a year and just this past Friday, November 15th, we got our check up and x-ray and found out he is down to 15 degrees curvature! I literally thought I would jump through the roof with excitement! I was getting myself ready for bad news, I just had a bad feeling and then all of the sudden we are all high fiving each other! I know we are not out out of the water and it could turn back to getting worse, but hey, that was a great day and I will take what I can get!! Another exciting piece of news is that I was elected President of the Prader-Willi Association - Illinois Chapter. After our success with the walk this past summer, some board members approached Katie and I (my co-host for the walk) to see if we had any interest in jumping in as President and Vice President. The current President was looking to step down and they were adding a new position (VP). Without really knowing what it would involve, we thought, if we do it together, we should just jump in with both feet for our kids! We just came back from our first National Conference in Orlando, Florida, where we participated in the State Chapter Leader Day along with the official conference. It was very overwhelming, but amazing as well. We learned so much and know we have so much work ahead of us, but are excited to jump in and get things started. Next Saturday, November 23rd is my first meeting at President and am bringing my list of goals for 2014. Ready...set...Here it Goes!!!!!!!!!