LA 2017!

LA 2017!
LA 2017!

Monday, November 18, 2013

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!!!!!!!!!

Friday, August 23, 2013

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!!!!!!!!!!!!!!!! :)

Wednesday, July 24, 2013

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!

Thursday, June 13, 2013

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!

Thursday, May 2, 2013

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! :)

Wednesday, March 20, 2013

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!

Wednesday, February 20, 2013

A reason for vacation!

So this post is a little late, but last month we took a vacation and what a great time Max had! I swear it is crazy, but every time I am going to go on vacation all of Max's therapists (OT/PT/DT & Speech) always tell me they can't wait to see what strides he makes on vacation. Everyone always says that for some reason kids in therapy always make new advances while on vacation. It is so true! We have always seen it a bit on prior vacations, but this one it was so apparent! Max was just starting to use words more and kind of doing stairs, but still afraid of the pool and the beach (well, the sand). This trip, he was a mad man! I guess it's the change of scenery, new people, new activities, the travel and adventure! He was wanting to do all the stairs himself, which he couldn't, but the effort was amazing! He also started using his words more and started saying two words together. As far as the pool, the first few days, he slid and fell and couldn't get his bearings in the kiddie part of the pool. By the end of a few days, he was pushing he way around, getting on the noodle floaty himself, and then figuring out that wet said to build castles is so fun, not a horrible thing not to touch and get off of you! (even though I feel that way! LOL) So, all in all it was a fun trip and everyone was so pleased with his accomplishments when he came home! I would say, a vacation is a needed tool for Max, not just for our fun! :)