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!

One Small Step for Prader-Willi Syndrome

So, last year after Steve and I went to our first Prader-Willi Conference, and learned so much and met some really amazing parents, I decided that I needed to be part of the movement to find a cure. I would not just sit back and hope someone else does the work and it happens for Max in his lifetime. A couple from Canada, Tanya and Keegan Johnson started the One Small Step for Prader-Willi Syndrome when they decided they wanted to find a cure, about 10 years ago. It started with one walk and now it is almost at 100 walks around the world. Parents are joining together one walk at a time to raise money for research that is desperately needed. This year, along with another mom, Katy, we are hosting the 1st Annual One Small Step for Prader-Willi Syndrome! I am a bit nervous, but am hopeful it is a great day and that all goes smoothly! And that we have good weather! So...wish me luck and I will post again after the walk!

Let's walk for the cure! So, it has been a while since I have posted, but with great and fun news! Since Max's diagnosis, Steve and I went from devastation to realization of what Max's condition means for our lives as a family. We dove into understanding it all, going to conferences and I am on every support group and research group I can find. One to learn, then to be part of the community. I have found that I learn the most from the parents of kids of PWS who have been through it before me and have older children. In these groups and at the conferences I have now also met the next generation of parents with kids of PWS...and the hope we all share for cure for the hunger, which seems to be the biggest devastation to hopefully having a life of independence as an adult.The movement has started with parents to raise money for research to find a cure. It started about 8 years ago with one family in Toronto saying, there is money for support, but where is the money in research? They decided to raise money and help and feel like they were working towards something and name their first walk, One Small Step for Prader-Willi - and with that success of raising money, they felt empowered. And now, just last the One Small Step walks around the world have raised over 1 million dollars! This year they hope to raise 1.3 million or more! So, now I decided to join that band wagon and along with another mom, I am hosting the 1st Chicago One Small Step walk! I am completely a wreck that it will flop, but so excited to be doing this and doing my part for Max! If you want to check it out, please visit http://onesmallstep.fpwr.org/dw/walking/location/721 for our main page or just check out my personal fundraising page http://onesmallstep.fpwr.org/dw/users/heatherosterman/Deerfield2013 - So if your reading this, come out and have some fun and walk for Max and a cure! :)

Family Visit!

Max's Uncle Scott (my brother) & Aunt Samantha just came for a visit and stayed with us in our new place in Northbrook. Yes, we moved to the burbs! :) They came for my Grandmother's 100th Birthday! I cannot believe she is 100 years old. I am so happy she is here to get to know Max. He is so in love with his Mema. She got that name from Scott. When he was young he couldn't say Grandma, so she became Mema. So, now that she has a Great Grandson, that became her official name! Max had such a great time with Scott & Samantha! He had a new audience to show off to and get all his books read to him and new people to play with, as he is bored with us sometimes, LOL! Now that they have gone home, he drags me into their room that they stayed in and we talk about Scott & Sam and how they stayed there and how Sam showed him her makeup and brushed his hair...it goes on and on. So funny! He misses them already!