Our So-Called Life.

Today was a great day. Filled with lots of memorable family fun. We went to my parents' house for cut out cookies. A Christmas tradition that I somewhat struggle with now that Cade has joined our family. Some days I feel totally against it and stand strong to the fact that he cannot eat cookies. Other days, like today, I feel like why not? Why can't I adjust his daily caloric intake and let him have a freaking Christmas cookie? He had so much fun and although it is still easy for us...I know things may have to change according to the way he progresses. Until then, so be it. He got one half of a Gingerbread man designed especially by him. Rather lower in fat and sugar and hardly any icing. He was a happy little guy. And Carter, my sweet-a-holic, enjoyed the decorating much more than the eating part. Surprised me! Here is our finished products... Carter and Cade Mommy and Daddy  Cade man hard at work! After things settled down we came home and enjoyed a family movie. We a...

Random thoughts are running circles in my head right now. I hate it...Nothing specific comes to mind to blog about tonite. I have been very busy preparing gifts for teachers and kids in Carter's class. They are having their "Happy Birthday Jesus" party tomorrow. Christmas is pretty much my favorite time of year. It is so magical and special. Even though it is not as fun for me anymore, I absolutely love experiencing the magic of Santa through my kids. It is just so sweet. We also focus on of course the most important reason for the season...Baby Jesus. We have a cute nativity set, and Jesus is not put out. Then on Christmas we welcome him. I think it is a nice tradition we have started. On another note, I have to go meet with someone at our local Social Security office tomorrow. I haven't blogged much about that whole situation...probably because it gets my blood boiling. Lets just say, we don't get crap. It doesn't matter that my son is disabled and has a l...

 Update: Thankfully a wonderful friend found this for me in another state! WooHoo!!! :) The #1 HOTTEST toy this Christmas! How would I know? Oh, because I have been madly obsessed with going to Target every morning just to see if they got some in. Don't worry, I am not the only one there waiting for them to open their doors at 8am. I remember seeing these things on the shelves and thinking about getting the boys one, but went back and forth with the idea. Now, that I can't find any...I want one even more. Sick, right? Haha! Anyways, if any of my online friends happen to come across one of these bad boys please think of me! I will somehow, someway get you the money asap plus some. :) 

We have spent the last week in Oklahoma visiting family. Our visit was good, just so ready to be home. I am thankful that my 87 year old Great-Grandma got to meet my sweet little Cade and spend some time with the boys. Seems like every visit we say this "may be our last time seeing her...." She is still kickin! ;) I think this will be the very last time I vacation with all my family at once...that I'm sure of! 12 hours in the car with my mom, brother, aunt, little cousin, nana, and my two boys then spending a week together...Ahh! That's all I can say. The men of the family stayed behind. We miss our Daddy for sure! Well, if you are reading send some good vibes our way. 11 hours to go and rain the whole way home!

Take some time out of your day to quiet your mind and reflect. Just let go, even if that means stepping out of your comfort zone for just a few minutes. I promise, you won't regret it. One WORLD, One LOVE, Peace to All! I love you <3     11/11/11 Awaken As One   World Alignment You Are The Light of This World Today is a miraculous day. It is 11/11/11 and people around the world are meditating for peace, harmony and abundance for all. There are people in every country praying, meditating and awakening. What a glorious world alignment, especially at 11/11am and 11/11pm on 11/11/11. This is a wonderful moment to give yourself the grace to let go of the day to day details and have some quiet time to focus on peace, harmony, unconditional love, forgiveness and prosperity for all. You deserve it! We deserve it! This is not about religion. It does not matter what your faith is. We are all Spiritual Beings having a human existence on planet earth. W...

It has been way too long since my last post, so I will just update briefly on the past couple of weeks. Really, nothing new or exciting...that I can think of. We are preparing for our trips coming up..Yes, I said trips as in plural. Cade and I will leave next Wednsday to go to Mississippi where we will meet The Kimmels and stay over for one night. I have became friends with Heather Kimmel thanks to PWS. Her precious daughter Emma is 4 with PWS. They are from Baton Rouge but have lived elsewhere due to her husband being in the Military. She decided to switch Emma's doctor to Dr. Miller so we decided to take the trip together. We will be saving on money in a couple ways...that is always a plus! So, we will get up early on the 17th and head to Gainesville. We both see Dr. Miller back to back on Friday, the 18th and we will turn around and come home. Yeah, quick trip...it will be tough. What is even tougher is that I will be getting back home really late Friday night and then lea...

We celebrated Carter's 4th birthday this past Sunday. We went all out with a Superhero theme and it was Super fun! Thanks to our special family and friends who came and made it so great! We love you! Building Skyline made with milk cartons and other empty boxes. Comic book banner...I just cut up Superhero comics. Superhero Capes made by Me!  Cupcakes made by Sams and I put in toppers. They were so good and so cheap! Party games included, Vaporize a Villain, Mighty Muscles, and The Bat cave... Villains faces taped on balloons and the kids(Superheros) used silly string to shoot the villains down.(See Below!) The bat cave, was a black covered tent with glow sticks(Kryptonite) inside. The kids(superheros) had to go in and retrieve the glow stick(Kryptonite). Mighty Muscles was just two paper towel holders taped together with a black ball on each end to resemble weights. This was to test their strength. Below are just some more pictures from the party.... Yuummm! Da...

Cade loves to quiz us. You can really tell he has had therapy since 8 weeks old. He asks "What's That?" over and over. He is just doing what people do to him every day. Carter was the camera man so that is why it is so shaky... http://www.youtube.com/watch?v=gBXLErw90s0&feature=youtube_gdata_player

So, as most of you know have seen from Facebook probably I attended the Next Generation Yoga Teacher Training this past weekend. It was held at Wild Lotus Yoga studio in New Orleans...love that place! Jodi Komitor is the founder of NGY and I feel so blessed to have been able to spend 3 days with her and 12 other amazing women. I learned so much more than just how to teach kids yoga...way more! It was a very positive move for me and I feel so inspired. I am looking forward to eventually share this inspiration with others. I have benefited, my kids will, and hopefully other children. We are in total control of our bodies and I think it is really important for kids to know at an early age how to balance mind, breath, and body. Yoga teaches children to develop a sense of awareness of their own bodies, mental and emotional states. Breath work and meditation help to still the active minds of children and give them something to focus their energy on. For the children that...

I have been a wreck lately. October is pretty much here and that much closer to Cade's surgery date...the 25th. The past few days I have put so much thought into things that I have literally made myself sick over it...sick to my stomach. I truly feel like canceling the surgery and just calling it off...and I think I will do that Monday. His circumcision can wait, as well as the minor reconstruction. He has been sick lately with a cold and all the congestion and breathing issues just remind me of how unstable he seems to be put under anesthesia...since he is already at risk. I just have this feeling..it is not good. Part of me says get it done now while he is little and doesn't pay any attention to that thing. But, isn't the respiratory issues more important? Obstructive apnea, respiratory distress, narrow airways, etc...The worrying has been non-stop. I know this won't end anytime soon, but it seems overwhelming. Surely there are more positive things to focus my energy ...

Cade is making major progress these past couple of weeks. On our journey so far we have hit plateaus and then he kicks things into high gear again for a while. Well, he has kicked things waayy up lately, to say the least. He is getting around great, on all fours. Still not walking or taking independent steps. He does cruise and will walk great with helping hands. The main improvement we have had is in speech, and I am really hoping these words don't disappear on us. He will mimic just about anything you do..it is quite funny. Aside, from that he has been signing more and talking so, so much. I have never technically wrote down all of his words, so out of curiosity for myself this is what we have communication wise. Bird, Dog, Cat, Mama, Dada, Nana, Papa, Chase, Ball(sounds like Ba), Bite, Snack(sounds like shnack, That, Fish(sounds like Shh), More(sounds like ma), Nite Nite, Milk(sounds like ma), Pop(just the P sound), Bath(sounds like Ba), Horse, ... I can't think of an...

This is a Beautiful story that someone e-mailed me and I had to share! TWO HORSES Author Uknown Just up the street from my house is a field, with two horses in it. Just passing by you would think they are just two ordinary horses. If you drive by slow, and stop by the fence, you will notice something extraordinary about these horses.          Looking into the eyes of one horse will disclose that he is blind. His owner has chosen not to have him put down, but has made a good home for him. This alone is amazing. If you stand nearby and listen, you will hear the sound of a bell. Looking around for the source of the sound, you will see that it comes from the smaller horse in the field.             Attached to the horse's halter is a small bell. It lets the blind friend know...

Hope you enjoy this short video of Cade's smartness. 

I know the weekend is not quite over yet, but I have some down time right now. This weekend was fabulous and we didn't even do a whole lot. So, what made it so great? I will start off with Saturday morning. I left the house early and went to pick up Nana. Her, the kids, and I went to a football game for our cousin Hunter. He is 8 and it was his first game. Our cousin Trent also is on the same team. They were so tough out there! After the game, we went bargain shopping around town. We bought this for Cade at the Flea Market... For some reason I am so in love with this very old bouncy horse. It is a Wonder Horse and it matches a model that I found online from the 1960s. It is old, but perfect for Cade. It is clear that someone screwed that yellow seat on. It is great though, because Cade can't fall off. When he is older we can just unscrew it. My grandma talked them down to $10. So, Yay for that! We got some lunch and the kids and I came home and spent...

Just wanted to share. This video doesn't capture as good as he did it the first time, but you get the point. Cade really hated the grass! He had the most disgusted look on his face and did not want his legs touching. Good standing practice!

Notice the smurf tattoo that he wanted to leave on his arm. Carter started his first day of Mulberry Baptist Children's Day Out program today. He had a great first day!  He was very nervous when we got there, but his teachers made him feel very comfortable and he never looked back. He is becoming such a big boy and it truly makes me happy and sad all at the same time. He has been really bored this past year staying home with me. I have carried so much guilt just because it seemed like all we did was stuff that involved Cade. I literally lugged him around here, there, and everywhere. Therapy appointments, doctor appointments, you name it. I tried to make time for him, but it was far and few between. I am so thankful that he has this opportunity to have some much needed fun time. It has been rough and definitely an adjustment. With that being said, Carter and Cade have a bond like no other. It is something that not everyone gets to see. Cade and I walk...

I am so torn on what to do with our Hippotherapy. The location has moved and is just a little further than where the other stables were, but the traffic makes such a difference. This was our first class at the new place and it is so out of the way. It took us about 1 1/2 hrs to get to the old location. Now, it takes about 2 hrs. It is 83 miles from our home. This is weekly and I just feel like it will be really hard to keep up. Not to mention we have a Tahoe that likes to guzzle gas. I really hate to take this out of his life though. I know it is so good for him! The main thing I am trying to achieve with the Hippotherapy is stopping Cade's scoliosis from progressing. If there is something out there to benefit and help him in any way, then I want to able to give that to him. But what if I just can't? If I stop the Hippotherapy and go to our next Ortho appt. and the curve has gotten worse I will have so many regrets. I am hoping I will be guided in...

Here is our newest addition... Meet Dudley, the inflatable horse. Here is Cade bouncing away on Dudley, as always. We all know Cade's obsession with horses since he started Hippotherapy. If you didn't, now you do. He is obsessed. Carter loves Dudley too. He can actually ride him around. Cade is not mobile with him...yet. He just bounces like crazy. I think the best thing about Dudley is that he was on clearance for a super great price and my bargain has turned into a very good (and cheap) investment. He is pretty cute too!

I just have to share this...Read to the end, it is worth it! What I Would Tell You……. © Copyright 2011 by Julie A. Keon. All rights reserved. I sensed someone watching me as I comforted my daughter after a particularly traumatizing dentist appointment at the Children’s Hospital. I looked up and saw you staring at us from across the waiting lounge. I didn’t pay much attention, as I have grown accustomed to the curious eyes of onlookers. Our daughter was born 7 ½ years ago and after an abrupt lack of oxygen at birth, she changed the course of our lives forever. Perhaps, our lives unfolded exactly as they were meant to— they just didn’t unfold in the way we had imagined or planned. I talked to my daughter, kissed her and hugged her. I was giving her a brief break before putting her through the next traumatic experience of the day~ the car ride home. Having cerebral palsy is the least of her worries but this condition can turn a car seat into a torture chamber....

WARNING: This is me just on a little rant...I feel the need! I will just start off by saying today was just one of those days! No matter how bad I tried to have things together, it just wasn't happening. I got the kids loaded up and packed for our Urologist appointment at Children's Hospital in New Orleans. We had a lot of time to spare so decided to go to Toys R Us before our appointment. After doing some browsing we planned to head towards the hospital and get some lunch before our visit. I didn't have my GPS so was using the map on my phone, which usually works just fine. Well, to make  a long story short, what should have taken us 15 minutes, took about an hour and 15 minutes! Yea, got sooo lost and turned around..I actually just wanted to pull over and cry. But, I didn't and someway, somehow all of a sudden I just came up on the street that I needed and it took me straight there. Yay. I then start my mission on getting the kids out and everyone's stuff only to...

We added another stop on our Thursday Agenda...Story time at the Library. I wish I would have taken advantage of this sooner for both of my boys. It is great fun! I brought Carter yesterday afternoon for his age group and he really enjoyed it. I did too! It was just him and I and that doesn't happen very often. It was a great bonding time. Today, was Cade's turn to give it a try and he just loved it! The different storytimes are categorized by age group. Today was Cade's age group, but siblings can come along and everyone just has a great time. Carter says it was fun, except for all the babies. I have been wanting to get Cade some interaction with other babies around his age. When he saw all the kids, he was just bursting with smiles. This will be really good for him. So, on Thursdays we have Story time, Speech Therapy, and then drive 1 1/2 hrs to Hippo therapy...Busy, Yes...But I wouldn't have it any other way. Today at Hippotherapy Cade trotted on his horse. I posted ...

Cade has taken his Hippotherapy sessions to a whole new level...

I have always been food conscious long before Cade came along. Then, Cade's diagnosis gave me that much more of a reason to follow through with a proper diet. So, Cade has always been on somewhat of a schedule. Now it is time to get the rest of us in gear. Carter never wants to sit down and finish a full meal and would rather pick and roam all day. This can't happen anymore. In my opinion, if Cade isn't eating no one really needs to be. Even though, the constant hunger hasn't set in for Cade yet (hopefully), he is still very intrigued with food. You can say certain words, then if you don't follow through a fit will soon follow. So, we would prefer to start monitoring food and schedules now, rather than wait until we have to. It just seems fair. For now, this will affect me the most. I am responsible for Breakfast, snack, lunch, snack,and supper. Always being on the go, I will have to really plan and get a grip. I want to though, and I know it will just...

 So, I have been really sucking at blogging, but we are so freaking busy! All of our appointments for therapy have recently changed. New schedule takes some getting use to. So, now our schedule looks something like this... Monday-11:30 OT Tuesday-11:30 ST/ 1:00 PT Wed.-  9:30 PT Thursday-11:30 ST 3:00 Hippo Friday-Nothing! Also starting Aquatics again twice/wk. Just not sure on days/times yet. Sometimes I really just wish our lives would just slow down and not always be on Fast Forward. Maybe one day :) I know I have been slacking on pictures too...Here are a couple This was after EEG-hair all fonky from glue, but still Handsome! He is getting so Big...wants to brush all on his own! 

"I believe that when the body is strong, the mind thinks strong thoughts." Henry Rollins I couldn't agree more with this quote. Sometimes people spend so much time focusing on the emotional and mental areas of their lives, that they forget about the physical aspect. Self-help books, Anti-depressants, therapy...they try it all and something still seems to be missing. Not saying that mental and emotional aren't important, but it is a package deal. It is so important to have a Healthy mind and body. Taking care of our bodies will give us great benefits...both inside and out. Even better reward is, Finishing a tough workout of the day, and knowing that if you can get through that, you can get through anything. I started doing CrossFit training and really like it. It challenges you to move outside your comfort zone both physically and mentally and forces you to deal with your weaknesses. I am so glad that I have found a great group of people at Blacklist,...

Lately, I have gotten into Yoga, and practice it faithfully. I am also going to be taking classes from Jodi Komitor to get certified to teach kids yoga. Next Generation Yoga was founded in 1998 by Jodi Beth Komitor . A pioneer in the kids’ yoga movement, she created the first yoga studio (in the world) just for kids.. Today, the media and yogis from around the world consider NGY and Jodi a leading authority on yoga with children . My main interest in kids yoga is for my own children's benefit of a healthy mind and body. I tried to find this for Cade and realized there was nothing like that around here...and we need it! When a young child learns yoga they are creating a foundation of healthy lifestyle habits that they can carry into adulthood. Research is proving that children who practice yoga are better able to focus at school, cope with stress and when stressed out have tools to self soothe. These are tools they can access for a lifetime.   I would love ...

Below is a video of Cade having one of his sleepy spells. I have done research and it sounds like Cataplexy...We will hopefully get this figured out soon. I don't think it is seizure activity, but we will check to make sure. This has always happened since about 3 or 4 months old. I just thought nothing of it due to his low tone and daytime sleepiness. Now, that he is 14 months old, seems to be something more. He only does it the first few seconds.

As many of you know, I have always been interested in alternative medicine. I always think it is best to take a natural approach, when possible. After all, God created our bodies to heal themselves! The doctor said he will focus on Cade's spleen. He did a few acupuncture needles today and is prescribing some herbs.  I am not sure what the herbal prescription will be yet. It will be a very small amount initially. He will be monitored, and it can only help him (and anyone for that matter). Some people are skeptical, and call me crazy. That's OK, and quite understandable. It is just not understood by some, and the benefits can't be appreciated. I feel like, Why not try anything and everything? I mean, my son only has the most complex genetic disorder. I know there are some people wondering when I will stop. Stop all the researching, the search for doctors, treatments, therapies, etc. The answer is I won't. I want to know that Cade is getting the best he possibly ...

I let Cade try to feed himself yogurt... Here is a sequence of pictures...all while his eyes are glued to the T.V. This last one cracks me up! Cade often will put something in his mouth and then let go, like this. Silly Boy!

Things can go from perfectly fine to really bad so quick with Cade...this is one of the scariest aspects of his syndrome. I feel like I have no warning time that a sickness is coming on and then when I start seeing the signs it is already so bad. So here is a rundown of last night...Cade had a little rattle sound to him, so I figured before bed I would give him a breathing treatment. Seems that the treatment loosened up some junk and caused him to get choked. He couldn't cough hard enough to loosen anything. Then he started having a little spell where he gasps for air. He looks like a fish out of water. He can't get a breath. He has done this a few times before, but always recovered on his own very quick. This time was by far the worst. He needed help, so I had to call 911. He had calmed down a good bit when the Paramedics arrived, but was still working very hard to breathe and sounded like he had strider. We were discharged today being told that he has croup that was causing h...

Sometimes I am really taken back by things that Carter says. Whether it is something gross, funny, rude, or sweet...I am always in for a surprise with him. Tonight, I was in for an even bigger shock! He was playing in his room and I was picking up some clothes in our room, just a typical night. He insists that he has to tell me a secret, so I bend down for him to tell me and he says, "Prader-Willi." I didn't even know what to say. I asked him what made him say that and he said he didn't know, he just felt like it. I tried to ask more questions like, What is Prader-Willi, or when did you hear that word? But he just blew it off and didn't have much else to say. I told him Cade has Prader-Willi and he asked if he has been having it. I said Yes, he was born with it, and then he went on to asking when Cade would be old enough to fight him. lol, Go figure! It is obvious that he hears it being talked about. His ears hear everything! I ju...

Well, today we had out Orthopaedist appointment to get a baseline treatment for Cade's scoliosis. I was dreading today...so many thoughts. Will I like the doctor? Will they talk about bracing, casting..? I totally did not know what to think. Fortunately, I liked the doctor (For once).  He did an x-ray and says Cade has about a 21 degree curve. He says he believes Cade is too little for bracing and that we will keep an eye on him for now. I am fine with that. I do not want to just buy time and chance things getting worse, but I also hope we can stop the progression of the curve with extra PT and core strengthening. It would be so nice for the curve to just not progress and maybe even lessen! The doctor believes we are doing a very good thing by starting Hippotherapy. Today was our second time, and Cade adores the horses. He was so excited to get on! He is so little on that big ol' horse, but he rides so well. Here are a few pics from his first time on the horse.