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! :)

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! :)

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!!

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! :)

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!

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!

Boys will be boys!

Max has always been on the sidelines with the kids in the neighborhood...now that he has started walking using his walker outside since the weather had been so nice, he wants to be out with everyone all the time! We had a rain last week, then it got nice, but left big puddles and the kids were jumping in the puddles. Max begged to get out of his stroller, then crawled into the center of this nasty puddle and splashed around, sat in it, got completely dirty, picking up dirt in the water etc...then the other kids joined in and all got soaked. Of course I had to scoop him up when it was time to go in and I got soaked in nasty sewer water, we stunk! He loved it because he got to get naked when we got in, and get a bath! :) All the little girls kept looking on saying, gross!!! Oh boy, I am just waiting for him to now pick up bugs and worms...LOL!

What a beautiful day in Chicago!

Hi everyone! Yesterday, March 5th was such a beautiful day! It was warm enough outside to be out with a light jacket, so around 5pm all the mom's and kids starting coming out with their kids to run around...(our community is gated in, so all the kids play in front of the house and we all watch for cars pulling in) For almost two years, I go out there and carry Max or he has to be in his stroller etc...and as he is growing, he is getting heavy! Plus, he wants to be out with the other kids, so it has gotten tough this past summer and fall. Well, today was the first really nice day and Max and I went out and now that Max can walk using his walker, he was free to roam the village! I put him down with his walker and the smile on his face was unbelieveable! I wish I could have caught a picture of him. I did get a picture that is a bit fuzzy, but you can see him walking. He had the best time walking with the other kids and everyone made such a big deal of him. He was ear to ear smiles. Man, I can't wait for summer already!

Max Update

Hi all! Well, we just had our meeting with the Endocronologist this morning and all of Max's tests and his sleep study results came back great, so we are medically approved for GH...(Growth Hormone). For those of you who don't know, Max's condition has given him very low muscle tone, just ONE of the reasons he is so far behind physically. Growth Hormone is not just for "growing", but will help Max with his Lean muscle mass and hopefully make him stronger and help his metabolism as well to push things through his body better. With the good, comes the potential bad (side effects), which we won't mention, since I believe if you don't put it into the Universe, maybe it won't happen to him! We are very nervous to start Max on potentially a life long drug, and hopeful it will only bring him positive things and that it gives him all the benefits it is supposed to give him! We should be starting it in the next few weeks, once we sort through insurance and the medical group comes out to show us how to administer it...yes, we have to give him shots ourselves every day, yikes for us!! :) Boy, we have done more medical things in our home in these last two years that I thought I would ever do in my life time, but realize we are much stronger in the stomach than we thought! LOL - Please put positive thoughts out for our Maxie pie that this only makes his life easier and better :)

Vacation!

It's been a while since I blogged, but we were enjoying an amazing vacation in St. Maarten! Max was a trooper and had a blast as we all did. Food was hard with his special caloric diet. Being out of the country has it's challenges and not being in your own house to prepare things. The grocery stores just don't carry what we have here. But, starting your child on a healthy diet so early turned out to be a blessing! We could go out for a nice meal and I could order Max Red Snapper with steamed veggies and just a small amount of pasta and we would eat it all up! People always thought I was crazy not ordering my child chicken nuggets and french fries for every meal! Max also really started to move more on our trip. His Physical therapist said a change of scenery sometimes really help to motivate them to explore new things. Max is crawling a ton more, was nuts crawling around the pool and kept heading for the bar! - Just like his Daddy! LOL - He even started to pull to stand. Now he can stand holding onto things and try to move around while holding on to surfaces. Go Max Go! My goal is he will be walking by his second birthday. I just know you can do it Max!