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!!!!!!!!!

First Day of School for Max - Aug. 20th 2013!

I cannot believe Max is 3 years old and officially started Pre-school this week! I had him in a toddler program last year, two mornings a week, which he loved. We moved to the suburbs of Chicago (Northbrook) to make sure now that Max graduated out of the state Funded(at 3 years old) Early Intervention, where he received all of his therapies, that he would still get those services. To do that, the school system where you live is required to take the kiddos in need of services into the school system at 3 years. For us, Chicago Public School after much investigation, was not where we felt comfortable for Max, so here we are, and Max could not be happier! He started in a summer program for 5 weeks, he was a little frightened...but by the end of the 5 weeks he was in love with his new school. We had our IEP meetings (Individual Education Plan) for Max and we received such amazing support from the NSSED program. (Northshore Special Education Dept)What an amazing group of people. So, long story short, Max had his first day of school and was sooooooo excited to be back! They have these White SUV's, called Septran's, which act as a bus and they pick Max up and drop him off every day in his very own car seat that they provided to us per Max's needs. The first couple of days, he was "kind" of happy to ride it...this morning, Friday, he saw the truck pull up and screamed at the top of his lungs that his bus is here! And ran outside to the truck, where his little classmate Joseph was already waiting in the truck (He had been on vacation from the summer, so this was the first morning Joseph was there). I opened the door, Max saw Joseph and screamed Joseph is here! And Joseph yelled excitedly, Hi Max!!! What a melt your heart kind of morning. Now, if only Terminex would show up during the allotted time slot to get rid of the bugs in our house, I would really be complete, LOL! They have 15 minutes left, why am I never the first slot EVER!!!!!!!!!!!!!!!! :)

One Small Step For Prader-Willi Syndrome Walk was a success!

Steve and I wanted send our heart felt thanks for supporting us in our 1st Annual One Small Step for Prader-Willi Syndrome walk! The day started out with a lot of rain as we set up and we worried about people not showing up. We were so excited when at just before 9am, the cars started to show up and the rain lifted as if just for us! By 10am we had over 200 people checked in, wearing their shirts, buying raffles and having a great time! We had just a few sprinkles of rain as we walked, but overall we had a beautiful day. We were lucky enough to have the One Small Step founders, Keegan and Tanya Johnson come in all the way from Canada to support us and get up to talk and really pump us up. They founded these walks just 9 years ago with One Walk. This year, we will have walks in over 72 cities and in 7 countries! Last year these walks raised over 1.3 million dollars and this year we are hopeful to beat that goal. We are already more than half way there! We want you all to know that because of all the support of our friends and family, along with all the people who signed up with their own pages to raise money for the cause, we have raised so much more awareness this year, AND over $43,000 this year so far for our walk! One of the things Keegan Johnson talked about is that research has come to the point where there are drugs ready to be tested and put into clinical trials. It is money that is what holds this process from moving forward. So know that your money donated will help to get those clinical trials started. I just came back from San Antonio, Texas for the National Foundation for Prader-Willi Research Convention and got to learn about where all the money went this past year, about upcoming trials and hopes for studies with different drugs for hunger. It will be a long road, but going to events like this helps us to remain positive for Max's future. Again, thank you all for your love and support to Max and our family. We are already looking forward to next year!