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!

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! :)

Hippotherapy - Horse Therapy

Hippotherapy for those who don't know what it is:
Hippotherapy is a physical, occupational, and speech-language therapy treatment strategy that utilizes equine movement as part of an integrated intervention program to achieve functional outcomes.Equine movement provides multidimensional movement, which is variable, rhythmic and repetitive. The horse provides a dynamic base of support, making it an excellent tool for increasing trunk strength and control, balance, building overall postural strength and endurance, addressing weight bearing, and motor planning.  Equine movement offers well-modulated sensory input to vestibular, proprioceptive, tactile and visual channels. 

So...While at the Prader-Willi conference a couple of months ago, I met a physical therapist there who kept telling me I had to get Max into Hippotherapy and how amazing it is and how I will not believe the results. Steve and I have been thinking about it, but Max already has 6 therapies a week, was it too much, would insurance cover it etc...well, once we got Max's diagnosis with Scoliosis, I went to my Prader-Willi group online for advice and information since there is always a group of moms out there who have already been through what we are going through with older kids. They all said, Hippotherapy!! So, we are hoping that this will just seem like a fun activity we are doing, not therapy, I mean he will be riding a horse once a week! We don't yet know what insurance will do for us, but you do what you have to for your child :) So, here we are...Max has just started his first day of Hippotherapy this morning! He did amazing! Last week he had his evaluation, which was pretty traumatic. We met our therapist, had a meeting to discuss why we were there and then got Max on his first Pony, a miniature Pony, named Penny. I cannot say which is cuter, Max or the pony, but seeing him on there was just about the cutest thing you can imagine. Max has sensory issues with putting things on his head, so we put on his riding helmet and he went nuts, crying, crying, then they put on his safety belt and the crying went to a whole new level. I couldn't go into the arena with him, since there are other horses and riders doing there work, so when he was taken away from me, that was it. He got to meet his Pony and only managed about 5 minutes before full meltdown.

For a full week, we talked up Penny the Pony and how awesome the helmet was, so he was prepared when we got there. So, we all put on helmets this morning, so Max wasn't alone wearing one. He cried, but not as hard, then he cried for about 5 minutes once he got on Penny. Then, he stopped and started to participate. There is a window we can watch from as he goes around. The first loop, he called for me, while crying. The next time he came around, he was smiling and showing me the ball he was holding, just like, look at me!! He stayed on for a full half hour and did amazing! I was just hopeful it wasn't as bad as last week, but this was more than I hoped for and it will only get better once he really gets comfortable.

Max, you are truly amazing :)

Update to Enough is Enough!

So, I know my last post was a rant, so wanted to update...we saw the doctor and he was not happy with the x-rays since they had him in a sitting position, not sure why. We took one more standing and it went from 27 degrees curve down to 21 degrees curve. So...he does unfortunately have scoliosis, but it's not as bad at this point as we thought. So, we will be watching him, going in for X-rays in another 5 months and hoping it does not progress. If it does, then he will have to get casted or some sort of bracing to keep him straight, so it doesn't get worse. I am just hoping we can continue to work on his core strength and just hope for the best it does not get worse. We are looking in Hippotherapy (working with horses). We were told it can be so great for the kids in regards to strength, balance etc...So, we will just see how it goes. We are bummed, but it is what it is and we will do our best for our little man that we love so much. No matter what, he brings us so much joy and he takes everything in stride and is just such a happy boy, so we just have to take his lead. Take it in stride and just be happy :)