My husband and I were blessed with our amazing son Max who is now 9 years old. Our fighter had a rough beginning when he entered this world and fights every day. In September of 2011, Max was diagnosed with Prader-Willi Syndrome. After meeting with doctors and doing research we are still learning every day. To learn more about Prader-Willi please visit www.fpwr.org. Follow our blog and keep up with our family and Max's progress!
LA 2017!
LA 2017!
Friday, October 12, 2012
I just posted a cute photo of Max as we are about to get in the car for school! Max is almost 2 1/2 years old and I put him in a toddler program to start him with socializing and getting used to how school is and he loves it! Max and I took some classes over the summer there together, so he would get used to the place, get to know the teachers and feel safe there, but I had never left him there. He did so great over the summer. So, the week after Labor Day, the time came and we were told the band aid method was the best by the school. Just a quick kiss and go! So, the first day, Steve and I went there prepared for a melt down, begging not to be left...only to have Max run into the school so excited and dart away from us, like don't let the door hit you on the way out! LOL - So, shocked...we left. Day two (he only goes 2 mornings a week) as Max and I pulled up, I could see him getting nervous. Once we got in the door, the melt down began. The begging not to be left. I think he realized, oh wait, you leave me here! I felt so bad, (but kind of happy that he wanted me, hee hee, sick right!) the teacher, said just kiss him and go, he will be fine. And of course he was, I think I was more traumatized. It only took about two weeks, each time a bit better. Yesterday, he ran in, turned to me, and said "BYE!!!" and took off. So, I guess he is officially a big boy now! Max is doing great and the school has been very accommodating to Max's needs (that he may need more physical assistance, get tired and need a break, and understand his food needs/issues and working with us on it) So, it has been such a great experience so far and we can't wait to see how he grows and changes with this experience with school, kids, music etc...I was told on Tuesday that Max won best dancer and that he is in love with the guitar! Go Max! :) We just love you so much.
Thursday, August 16, 2012
What a fun weekend, thanks Olsen Family! Our friends from Chicagoland, who now live in California were in town visiting and invited us up to their cabin at Lake Delavan this weekend. What a great time! The Seed family came up as well and everyone has boys boys boys! Max was the youngest, but loved following all the boys around trying to keep up. What great exercise for him to keep his body moving and motivating to do more. On Saturday afternoon we all headed down to their pier and all took turns taking the kids on the wave runners all around the lake. Everyone had a blast, the kids loved it! Well...all but Max, Steve & I both took Max on going about 1 mile an hour and he was just not having it! LOL So, it was short lived, but he got on there! We all hung out on the porch, in the yard, the kids ran and played, we had a big pot luck BBQ, and ate all scattered around the yard. Everyone was so impressed with Max's meal! I had brought Salmon, sweet potato and yummy veggie mix (but he opted for some corn on the cob, it's not a great veggie, but in the summer you have to do it every so often, so yummy and he just loves eating off the cob!) With Max's condition he can only eat super healthy, and thank goodness he just loves it! I was telling eveyone that I can make him anything as long as it has Herb de Provence on top, they thought that was hilarious. Max headed off to bed and we had a bon fire and smores and wine, beer etc...lots of fun. Sunday morning, the mom's took our coffee down to the pier and the men & boys took their fishing pool, worms and leeches and caught all the tiny blue gills by the pier. Max had such a blast! We thought he wouldn't like to sit still and touch the worms, or fish, but he did it all. He held the fish, tossed them back, dug into the worm bucket, which I think is completely disgusting, but I guess he is all boy! :)
Sunday, July 22, 2012
Max in Amish Country!
We just came back from a fun weekend! Check out the photo of Max in his Amish Hat! We had an outing in Bremen, Indiana at a friend's place with a bunch of people and their kids at a Cottage on a lake. BBQ'd all day on Saturday, did some water sports and just hung out in the water and on the lake, so fun! Since it was about 3 hours from Chicago, we made a weekend of it and stayed in the area in Nappanee, Indiana at a placed called Amish Acres. We stayed at the Inn at Amish Acres. What a trip! We ate a big Amish meal, shopped in beautiful wood furniture stores and explored the Amish Acres, and all their amenities. Of course we had to visit the gift shop, buy fudge and all the tourist stuff you do! It is so bizarre to see the horse and buggies on the road all over town, at the grocery store, and generally everywhere. What an interesting life they lead, so amazing to get to experience it. Fun weekend! Max had a blast! :)
Monday, June 25, 2012
Max is finally really starting to talk! So, Max has been in speech therapy forever I think, LOL, and has learned a ton of sign language, which has been amazing so we can communicate, but Steve and would always say, I wonder what his voice will sound like, and just couldn't wait to hear him utter some words. Of course, he has over the past several months, said DaDa...and Papa, of course not Mama!! :) - then ba and nonsensical things, but it seems like all of the sudden, over the last weeks, he is really trying and all of the sudden Bye came out, then more, then finally Ma! He mostly needed prompting, but he is getting it. Then on Saturday after an overnight at Grandma and Grandpa's, he came in and said, Hi!! I was like what!!?!??? So, needless to say, we are so thrilled to hear his amazingly sweet voice starting to talk and make himself heard. I think as he gets physically stronger, his words come more and more. You can tell he is so proud of himself and so are we!!
Thursday, May 17, 2012
How Strong is Max!
I posted a picture on my blog to best describe this, but we are always telling Max how strong he is as we help him to conquer his goals. It has gotten to be the funniest thing, we say..."how strong is Max!?" Then he has started holding up his hands and clenching really tight making the funniest faces, like yes, look at me, I am sooooo strong!!!!!!!!!!!!!!!! It is so hilarious. You are so strong Max!! We love you! And you really are getting so strong! :)
Tuesday, May 1, 2012
Max's First steps!
It finally happened...on May 1st, 2012...during Physical Therapy, Max completely walked on his own for about 5 - 7 steps! His therapist and I were playing a game with pretend bugs...she had the bugs in one part of the kitchen area, and I had the basket on the other side, and we asked him to take a bug and bring it to me to put in the basket. We have done this from sitting to stand and getting him to stand on his own, then asked more and more of him. He has taken like a step or two almost on his own and then falls into you...today, he really for the first time, walked completely on his own from point A to point B! It was crazy amazing! He is stilling wobbling around like a drunk man and falling, but he did it! I so badly wished he would just take a few steps by his 2nd birthday, which is coming up on May 20th, and yes he has done it and I wish came true! Now of course, I am greedy and switched my wish to walking from place to place in the room when playing rather than going to the ground to crawl, or pull along holding onto things or me. My back is soooo ready to not be bending over anymore, LOL! Go Max!
Wednesday, April 11, 2012
My Brave boy
Hi eveyone! Well, we are on day 10 of Max's Growth Hormones that he needs to be on and he is such a trooper. I cannot lie, it's been pretty heart breaking though. He needs this shot every night to help him not only grow properly, but mostly at this point to gain lean muscle and help his metabolism, which he desperately needs, but giving a 23 month old a shot every night when he doesn't understand why you are doig this to him is heart wrenching! We had a wonderful nurse come over and go step by step to train us on how to put together the shot, mix the drugs and administer the drug, practicing on fake body parts...then came the real deal. He cried so hard. We had to pin him down and cause him pain that he didn't understand...and it only took a day or two for him realize when he saw the needle coming, he needed to run and then we had to pin him down, awful... So, like any parent, we now bribe!! LOL! Even though food is not what we do in our house given his circumstances, you have to do what you have to do. So, we save a special small treat with his milk that he only gets after his shot. We try to explain it and show him the treat...I am happy to say on day 10, he seemed to atleast understand he had to tolerate it to get the treat. He let Steve hold him while I gave the shot. He did cry when the shot went in, but settled pretty quick when he got his treat. What a long way a half of graham cracker goes!
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