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 :)

Enough is Enough!

Well, normally I only like to post positive things, but today I really have to vent...and hope anyone who reads this will put out good vibes to Max this his appointment this Weds goes well (November 28th, 2012). One of the many side effects for our kiddos that have Prader-Willi Syndrome is Scoliosis. Because of the severe low muscle tone, there is not a lot of support around the spine area. This combined with the fact that kids with Prader-Willi (PWS) need to take Growth Hormone to their muscle tone, metabolism and proper growth function, it gives them growth spurts and they can have severe cases of scoliosis at this early age so need to be watched. We just had our first screening and Max has been doing so well and watched and looks so good I really thought it would be our baseline and it would be just fine. I got the results a few days ago and it was a punch in the stomach. I heard Max's pediatrians voice and I knew there was a problem. He told me that the results show all kinds of curves, although it noted it was difficult to get good pictures. Obviously we are concerned, so now we are adding yet another doctor to Max's group and are off to see the Ortho to have him look at Max, the pictures and decide what to do. From all I have read and learned, once your curve hits above 25 degrees (Max shows 27 degrees) they may put him in body casting to wear almost 24 hours a day to help stop the curve! I honestly cannot wrap my head around the fact he may have to do this. I have met kids who have to wear them, and I know it's not uncommon for these kids to deal with this and it can get better, but every time  he gets tested for something new, he has it, I mean really!! So, I will keep everyone posted, but please put out good thoughts that it was a bad test or something and it won't be true.

To end on a slightly better note, he did recently have his sleep study (since the growth hormone can make their organs grow too big, like tonsils and adenoids) to be sure he isn't getting sleep apnea, which can be common, Max thank goodness does not have this at this point. The test is just awful, electrodes all over his head, face, neck, body, legs etc...and he handled it like a champion (for the most part) too. He always is a good sport :) - So, I lied, there is one test that came back negative and he doesn't have it!! Woo Hoo - LOL

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.

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! :)