Our So-Called Life.

Jake and the Never land Pirates, And Meeeee!   That is Cade's new show. Oh and that is not Cade pictured above, that is Jake the Pirate! (HaHa)    He still loves Dora and LOVES Diego..well he loves a lot. The kid just LOVES TV..(I know not a great thing), but hey I really have bigger issues to be concerned with at the moment. If Cade had his way, he would watch "his" shows 24/7. I absolutely love the way Cade has been singing along lately to his favorite shows. It is something rather new and even though for sure only I can understand him..I still love hearing him. He is trying and if his nose would be plugged for the words that he needed nose occlusion, his singing would sound wonderful.   Cade and Carter have been playing Hide and Seek for a couple weeks now on and off. They both love the thrill of seeking one another. Cade can never wait for Carter to find him. He will go hide and run out seconds later screaming. It is the cutest. Carter on the ot...

Cade has always been on a low carb diet. With PWS the body doesn't process carbs the correct way, therefore they don't serve much a purpose in Cade. They make him very sluggish, tired, and craving more food. There are studies happening right now going into detail about how the Ketogenic diet, and Atkins are beneficial in those with PWS and could be a great option.  It was never about a number of calories for us. It was never OK, 1000 calories/ day and no matter how you get them just can't consume more. That just doesn' t sum things up in PWS. It is interesting to look at the families who have been doing these high fat/protein-low carb diets and how incredibly well their children look and behave. Diet is so important in any of us, what we eat affects the way we behave, look, and feel as well. I received a link to a website www.charliefoundation.org from another PWS family. If you can, visit the site and watch the video on the homepage. It is amazing.   So, ...

So I had so much blogging to catch up on that I never got around to....like I wanted to post the pictures of Cade navigating the Chick Fila play place...He did that so well! Or the cute pictures I had of my two little guys from Halloween last night...Or their surprises from the "Switchwitch"....   But... Instead of all my fun, exciting posts I have a sucky, not so exciting post. Go Figure! It is just one of those nights for me..well, actually it is one of those days, nights, weeks, shit its been months now... Cade's always made great strides in everything he has done...and he still does which is great! But, when he gets down, it takes so long to get back on his feet again. We need a freaking break. I don't think that will be happening anytime soon. It will probably never happen. If it is not one issue it will be another or a new problem that arises. I mean lets face it.   What started off to be just any other day turned bad real quick. Cade had a second s...

So, Jake and I were able to hang out with some pretty awesome people this weekend and it was great! It felt so good to be in the best of company and let go after all that has been going on around here. I was uneasy about leaving Cade, two nights in a row..but I did. Besides having a nasty cold I think we are well on our way to recovery. We just need to get his Speech on track again and I will be happy!     Here are some photos from the weekend....   Dr. Miller and I in Baton Rouge                                                               Then off to NOLA.... Keegan, Me, Tanya, and Susan Jake, Keegan, Tanya, and Susan     ...

So, a lot has happened since my last Post-Op post....Where do I start??   Should I start with my the fact that my long, thick, beautiful hair is a thing of the past?!?   It is falling out and breaking...Stressed much? I think so.   Anyways, so exactly a week after Cade's T&A he took a turn for the worse. I had figured he was getting better day by day..still not himself, but none the less would be OK. I was busy doing things in the house when Carter came running up to me saying, "Mom, Cade has blood." My heart sank. I ran to him and sure enough, his mouth is pooling with blood. Jake and I ran around like crazy people and it took only seconds to realize we couldn't stop this and he needed medical attention quick. Long story cut short.   We spent the night in the hospital for "observation" which quickly turned into "operation"   Cade had another bleed in the night and all the doctors and operating team were called...

As most of you know this has been one hell of a recovery for us!   I am just so ready to have my little boy back. So, on Thursday morning Cade went into surgery at approximately 9:30 am. For the next 1 1/2 hours I sat in the surgery waiting room pondering what things would be like when he was out and going over every possible scenario that could occur. I could have never prepared myself for what was to come.   Jake, Carter, and I went up to Cade's room where he was very upset. The anesthesia hits him like a ton of bricks. He really didn't fully come out of anesthesia the whole day. He of course refused food and drink that day as well. The night was holy hell. I couldn't make him comfortable, not any way possible. His pain was unbearable and it seemed as if the pain meds weren't working. Anyways, we got through the night and it was one night down. Good deal, I was ready to force some liquids down him and get our discharge papers.   Then, out of no where Cade...

So, I know I haven't even been able to find the time to blog about our recent trip to Florida to see Dr. Miller and we are already going back. Whew. OK, as most of you already know Cade's visit was very, very positive. Dr. Miller was just thrilled at Cade's progress and had nothing negative to say. It was an amazing visit with happy tears shared from both of us(Yes, Dr. Miller shared some tears as well). Very, very moving I tell ya. To see this very professional, educated, amazing doctor get teary over MY kid...the best feeling ever!   THEN, as we are checking out she calls us back to her office. She said something like, Hey I know we just had the best visit ever, but his sleep study was just read and shows severe obstructive apnea..tonsils and adenoids need to come out ASAP.   Um, Whaaat???   So, that was our only flaw this visit. Horrible sleep study with desats down to the 80s...So not good! Our last study was great, but it has been a little over a...

My Oh so lovely fellow PWS mom, Ali Shenk posted this very powerful video that I wanted to share.   What would you tell yourself on the day you received your child's diagnosis?    I remember that day so well. It was a phone call I had been anticipating for over a week as we patiently(yeah right) waited for the results. Cade's NICU doctor called and asked if Jake was home...he said to put him on speaker phone so he could tell both of us the results. I didn't though, I wasn't ready for Jake to hear it. I felt as though I knew the results already. I had done so much research, I was ready to accept it. For Jake things weren't that easy. This video hits home. What a difference 2 years has made.   If I could go back to that day, I would reflect on all these messages whole heartedly. The future was such a scary thought...and still is at times. That is besides the point. I have learned to live for today and cherish all of the unconditional love th...

Finally, after much anticipation and harassing of everyone involved our loan on our house is closed! But, of course now we are unable to close on our new home because of Hurricane Issac who so rudely decided to intrude. We have been living with my parents since Friday(Oh Joy!) and will be here for sure till the weekend. There is truly No place like Home! Hurricane is expected to hit late tonight into the morning. We are currently feeling those outer bands now. I know most people think there is nothing south of New Orleans, but there really is. We are about 50 miles South of New Orleans. You can check out just where we are...  Here is the Radar Map Thankfully, we have a generator to at least power an AC unit for when the power goes out. I hope my little Cade man and Carter handle the heat OK. They BOTH have temperature regulation issues. Other than that, no issues at hand. We are stocked up and ready to ride it out. I am hoping he doesn't just sit and stall...Please pr...

Yeah, so that previous post about Carter starting at a later date at an out of district school...scratch that. I called the director for our Pre-K program here in Terrebonne Parish and she pretty much stated that all schools are full and there was no room. Great! Telling the truth and being honest always backfires! Let me backtrack some here...Way back before we decided to sell our house I registered Carter for Pre-K at the school in our district now. Then when we knew  for sure we were moving, I contacted the necessary people and they said the school he would be going to once we moved had a waiting list, BUT he could go to another school nearby. They would have to wait till school started to see the numbers. Well, school started yesterday for them so I called to see how things were going and that we were still waiting to see where Carter could go...then the ball dropped. Hmm, OK there goes that!  I took it a step further and spoke to the Assistant Super Intendent who said...

Today is the day Carter should have started Pre-K. With our move and being in between school districts it is affecting where he will go. Since where we are moving to has a waiting list and Pre-K isn't mandatory then they have to wait till school starts so they can look at other schools in the area and place him somewhere. Not fun. I saw all the sweet posts about our friends' kids starting today and was happy that I get another week with my Carter man. They just grow up so fast and as much as I NEED a break, I will miss him. He can't wait though. I know he will do great wherever he may go. Oh, and Cade will be starting school too! He will be going to a preschool where Carter went last year. They know his situation and know our family..I totally know he will do well there. I trust them with everything, but still feel so nervous. It is only 1 day/week for 1/2 a day. I can handle it. Here is Cade's take on starting school.... Watch here!

I think it is safe to say it is official, we are moving. We have been under contract for 2 1/2 months now and finally have a SOLD sign. This buying and selling process has been anything BUT easy. Totally sucked...from start to finish..well not that we are finished just yet but you get my drift.  The house that we are buying has a close date of August 21st. Here we are the 15th and I have yet to get a close date on our home we are selling, my house is a complete disaster, my family is living out of boxes, and everything else we own is in storage...I could bitch some more if I really wanted to. We had the re-inspection of our home we are selling yesterday. We won't even go there! Lets just say I just got done writing my complaint letter and I am so over it I can't even explain one more time the situation or I will just freak. I am done and it really pisses me off that much more when I think about that Jerk of an inspector! So, yeah.  By this time next wee...

I have been blessed with an extreme amount of support since Cade's birth and our journey. Some new friends, some old, and some complete strangers. One stands out to me. I remember getting a blog comment one night from someone I didn't know. She messaged me and I felt instant comfort. Just knowing that she was reading my blog, cared, and was just there. We talked online, but still never met until months later. We get to talk much more now that our boys take aquatics at the same time and I am so proud to call Erica my friend. She is an incredible Momma..Now here is why... Visiting a public park is a common occurrence for children, but not all parks are created equal.   Erica has big plans for an Adaptive Park in our area and is putting on a 5K race in October to help make those plans a reality. After talking to Erica this weekend I have learned some exciting things and can't wait to see it unfold. The park is going to be amazing. The park is for everyone t...

 Cade's delays stick out now more than ever sometimes. I think now that he is well over two it shows more when we are around others his age...or even younger at that. I cringe sometimes at the things I see others doing,  and the speed they do them at.  I mean Cade loves to play outside and jump and run...it is just so hard for him. It comes so natural to others, which sometimes slaps me in the face like a wake up call from hell. With that being said, it is still OK for me. I know he is different and I am OK with that.  I never, ever dwell on things like this. I am always positive and I believe that is the only way to move forward. This past weekend we visited with some dear friends of ours at their house. They have two boys as well. Their youngest is the same age as Cade, just a few weeks younger. Cade tried to keep up with his every step and nothing in the world bothered him. At one point their son imitated Cad...

Literally, Cade is "Climbing" right along. He is just doing great! I remember not all that long ago I was just wondering when he would ever walk. Would he? It just didn't seem possible. I couldn't even imagine the sight of it. Now, I just wish he would sloooww down. He is a runner. He likes to take off...and thinks it is funny. Not so much! I have to be very careful. In this picture he climbed up all by on his own. My little guy is so strong. We all know how HOT it has been here in South Louisiana. It seems like summers just keep getting more extreme...well they are. It is just so unbearable sometimes. Carter has been having issues in this heat and it is time to figure out what is going on. Since I can remember he has been very sensitive to the heat and dramatic. He is always hoooot, melts to the ground and is so pitiful. I always just blew it off, but I think it is something more. He now can be outside for just a short time and start getting sick to...

I have been so overwhelmed in life lately, and sadly my poor blog has suffered. What have I been overwhelmed with? Selling my home and buying another...Such a HUGE decision...Ahh! After our home being on the market for about 2 1/2 weeks it sold..yay. The purchase agreement was just signed today, so on to the next step with that. As far as us and a new home, we are pretty set on one we LOVE! We have looked at quite a few, and have realized that we can get an older home, with lots of room and in need of some updates OR a newer home that is a little smaller,but totally move in ready with nice features. It has been a back and fourth thing for us, but really and truly nothing compares to the newer home. Perfect neighborhood, great school district...top end of our price range, but I think it is worth it. Now, we just need the rest of our buying/selling process to go smoothly with no stops! On another note, I have two busy boys! Aside from our daily therapy visi...

So happy to announce that our eye surgery went very well! We were debating whether to go through with it since Cade started running a low grade fever Sunday. My gut said to do it, and thankfully everything went so smooth. His sats never dropped and luckily stayed at 100 % all night. We were home within a couple hours of recovery. I Can't wait to see his eyes when they are no longer bloody. He has been wearing some cool shades that strap around his head. We got them from Academy. It is so funny how Cade never messes with them and loves to wear them. He does have to stay out of the water for a couple of weeks, so that means no adaptive aquatics for now. Recovery seems to be very easy though. No real pain and should be clear in about a week.

These are my Parent's neighbors who arrived at Disney World today and decided to wear their One Small Step shirts to show support for our little Cade man! I bet they don't realize that today is the last day of PWS Awareness month and this is by far the best awareness tactic! I just know  one of the million people who was standing behind them in one of the plenty lines I am sure they stood in today read their shirt...some may have even googled One Small Step or Prader-Willi Syndrome to get more information out of curiosity. This is what PWS Awareness is all about! These guys are an awesome family who have helped us throughout our journey so much! Huge thanks goes out to the King family, You guys really ROCK !  

My Carter man had his Pre-school graduation today. These past years have flown by way too fast. Starting school seems so big. I am not ready. I know he is though, which helps me cope. I have already warned him that he will never ride the school bus and he was not happy about that. Hehe. I cannot put my baby on the bus with all those big kids..oh no! He misses the cut off for Kindergarten, so he actually will be going to Pre-K instead of Kindergarten which stinks, but oh well. His little performance tonight was great. His class walked in to the traditional graduation song with their little graduation hats on...Aw. Then they sang 3 songs for us. I love my sweet boy!

What a great way to kick of Prader-Willi Syndrome awareness month?!? May 1st began PWS awareness month and our Point of Vue debut was a success. I had no clue we would be on the cover so that was a huge surprise to see, well hear...I think I was the last one to get a finally see the magazine. I am so thankful we had the opportunity for the awareness that this has brought to our area. Those are the sweet pictures above and here is the article link below. POV Story. So much awareness, I feel so completely blessed.  Also, some more exciting news...Jake picked us up a copy of the local Fitlife magazine today because there is a story about Alison Desmore with PWS and race info as well. So, another way to gain awareness...which is exciting, but here is the other part. Jake says, there is a picture of a kid in there that looks just like Carter. It was an article pertaining to the Triatholon Carter participated in last year and it IS Carter! LOL We were so happ...

Come on, Will you?  Today and everyday for the next 16 days? Just click on this link, http://communities.challenge.gov/submissions/6800-take-one-small-step?notice=success#vote_submission_6800   and then that is it, DONE! It means everything to us and we thank all of you who are helping us out!

Dear Tanya and Keegan Johnson, Since, I have finally gotten back to normal here at home I can do what I have been longing to do since I arrived in Toronto and that is thank the both of you. I really just want to thank you from the very bottom of my heart for giving my husband Jake and I this opportunity. I know there are others that I owe thanks to as well, and Thank You to all who have helped make this possible. I remember getting the phone call saying I was the winner of the trip, and it was so surreal. I had so many mixed emotions...I was excited, nervous, happy, and thankful. I never win anything, and just couldn't even believe that I had actually won! So, then the planning began. I pleaded with Jake to please come with me. I explained how I needed him with me and that it would be so much fun. It took him a while...( a long while) to agree to come. He made sure I knew that this was only for me and that he really didn't want to go. He didn't want to meet other...

http://www.fpwr.ca/2012/announcements/en-top-5-reasons-you-should-vote-prader-willi-syndrome-to-the-white-house/

I remember like it was yesterday staying glued to the computer day and night...just searching. Searching for information on PWS and reading through blogs. Kelle Hampton's blog is not about PWS, but I relate to her in every way. Her outlook on life mirrors mine and what I want mine to be. I remember reading Nella's birth story and it just sent chills down my spine, and still does. I e-mailed it out for my family to read and even read it myself to some of my family. I wanted everyone to know how beautiful our lives would be because of Cade...not how hard and miserable some thought it would be. I love, love, love her blog and can't wait to start on this book, Bloom.

Just look at Cade's hair. It was perfectly fine at Christmas time. So, that is about 4 months or so ago. What the HELL? Looking at these pictures reminds me of how beautiful his hair once was and how much it is turning to shit now. I am pissed..really pissed. What is going on??? I need answers. Slowly started to look frizzy, then just flat out fried, now balding and extremely damaged. I am scared to wash it or brush it because I don't want him to look like a mangy dog..as he already is. His face is still Beautiful of course, but you get the picture. :( Dr. Miller is looking into things. She has done a very large work up and has come to these conclusions so far... 1. Thyroid is functioning on the low end of normal 2. High Vitamin A levels 3. IGF-1 levels are high, so GH needs to be lowered. Looking all of the above things up on the Internet all has some sort of possibility of hair loss. Go Figure...tells me absolutely nothing. We are waiting to see what the Dermatologist says...

Lately, we have had a major issue with Cade's hair. It really upsets me because hair is important to me. I know things could be much worse, but still it is my guy's hair. Well, for the past few months I have really noticed changes. Very brittle, fried, and damaged looking. We cut it short and it looked a little better but it still continues to grow out fried. Now, I notice hair loss. Spots look thinner than others and I can gently pass my hand through the top of his hair and a few will come out. Boo! We have been trying to figure this out. We, as in his Endo in Florida and I. Dr. Miller ordered a whole crap load of labs and everything seems OK. Thyroid is functioning on the low end of normal, so for him may or may not be "Normal." Go figure. Vitamin A is high...Weird. IGF-1 levels are high- so we have to come down on Growth Hormone..This is proof that he is going in to Phase 2A (increasing ease of weight gain, slow-down of gastric motility) And so it begins...DIET ...

   My brother, Grandma, and I went to the Mahaila Jackson Theater in New Orleans to see The Lion King. It was breathtaking...I loved the experience. It was so moving. Huge thanks to my Mom for getting these tickets for us! We had such a great time. The talent of these actors were just amazing. I love spending times like these with the ones I love.  

FINALLY, we are just about recovered from this Tonsillectomy! It has been rough for Carter man and just plain exhausting for me. He had his tonsils removed on March 9th and was in pain off and on all day and night for a full week. He would scream and cry in the middle of the night then would refuse meds. He wouldn't drink. Just horrible! I am so thankful we are passed that! He is back to my happy guy and that makes us all happy! On another note, Cade is extremely mobile! He has become quite comfy with the idea that his feet are made to take him places. It is so surreal to see him walking around. We have waited for what seems like an eternity for this day. 22 months old and he has the confidence now to just take off. I love it. 

The 2nd International Conference on Hyperphagia is scheduled to take place in Baton Rouge October 17-20. Over 20 scientists from around the world have committed to speak on various aspects of the research on appetite control.  Click here! to view more info about it. Pretty exciting, love all the interest PWS and Obesity!

My thoughts lately...If you think this is directed towards you, maybe it is... Hope something is gained! The most pathetic person in the world is someone who has sight, but has no vision. Glory built on selfish principles, is shame and guilt. Expect anything from anyone; the devil was once an angel. When life makes you have to put up with mean and hateful people, just think of them as sandpaper. They may scratch you, rub you the wrong way, but eventually, you end up smooth and polished. But the sandpaper; it’s just going to be worn out and ugly. If people talk negatively about you, live in such a way that no one will believe them.

“Love yourself—accept yourself—forgive yourself—and be good to yourself, because without you the rest of us are without a source of many wonderful things.” ~Leo F. Buscaglia You mean I am a source of many wonderful things? Yes. Actually you are. Own up to it. Leo has it right. 1. Love yourself. Despite all the things that you think may be terribly wrong with you, love yourself . Love yourself. Tattoo it on your brain. I can think of so many reasons why you should love yourself, but here’s just one: It is incredibly dull and uninspiring to be around people who do not love themselves. I spent many years being anorexic and feeling like I was a monster. I’m sure I was not much fun to be around and I also know that I didn’t book any of the acting jobs I was trying to land. It is very challenging to hire someone or love someone who fights you by holding up a mirror of hatred toward themselves. Here’s my challenge for you today: Take a picture of your face and remember that in 10 years time ...

OMG ...Yep, I am going to Toronto! Ahh, still keep pinching myself. I am so excited and nervous all at the same time. I feel so overwhelmed with Joy. If you haven't heard yet, my name was chosen out of the group of One Small Step hosts. I won a trip to Toronto, Canada to attend the FPWR Gala and Conference in April. I am so thankful for this opportunity. I can hardly wait! Reflecting on PWS tonight makes me realize so much. How different life is since PWS. It has been rough of course...with the toughest times to come. But some amazing things have happened as well...that maybe wouldn't have happened otherwise. Instead of focusing on the pain, sorrow, and troubles that this horrible syndrome has caused, I am focusing on the highs not the lows. I can think of a handful of Highs that have been gained the past two years. Family has became closer and brought together, life long friends have been made, research funds have been raised, awareness has been spread, knowledge has been ...

So, I think race things are moving along nicely so far. Don't know how much Facebook invitations count, but have had a lot of feedback so far. I am hoping I get more feedback from previous sponsors about wanting to sponsor again. I am also looking for businesses interested in new sponsorship. So, if anyone has a hook up, let me know :) Today, I saw first hand how good hearted some people are. Pure motivation in my eyes. I mean lets face it, everyone is busy with their own lives. Just with the normal day to day tasks that have to get done. Then, to see people who take time out of their day to benefit me, my son, and the whole PWS population it is remarkable. Especially, when their is no personal connection. I am so thankful for people like this. It is why our mission is successful. It is easy for me to advocate and really work hard to raise money for this. It affects my son, of course I am going to do everything in my power to take control of what I can...since not much is in my co...

Feeling the need to blog....Two topics I want to blog about...One Small Step news and my brother's car accident. I will blog about my race later...  So, I remember when my brother, Chase, who is now, 18 first got his license. I felt like a Mother worried sick about him. Although he is a very good kid and much more level headed than I was at that age...I still knew what other people were capable of and then there are truly accidents of course. He seemed so new and just unaware of the world. I totaled my car a couple weeks after getting it when I was 18. Also, had a couple other accidents. I know how quick things can happen...it is so scary. Well, The worry wore off and he has been driving a couple years now. Don't even think twice about him driving anymore.  Then it happens...just about an hour ago I got a call from him...he said he just wanted to let me know he got in a wreck. My heart sank to my feet and I fel...

Today was our first Mardi Gras Parade of Carnival season. Although the weather has been pretty ugly around here lately, today it was a beautiful day! We left Cade at Gam's house since he has yucky pink eye again. :(  His whole underneath of his eye is swollen and red. It looks more like he got punched in the eye. Poor buddy. It gave Jake and I some one on one with Carter though and we had lots of fun. We got to spend time with good friends as well. Carter really got into the parade this year. After he caught a cool sword though, that was it...he was ready to go. His face was priceless when he got handed the sword. Oh, the joy that a crappy, little plastic sword can give a boy. I love that kid!

Yea, I am way past due on this but better late than never...right? OK, so we left last Sunday for Florida and came home this past Wednesday. We were undecided whether we would still make the trip being that Cade had just been through a rough time with the RSV hospitalization. He was 100% better so we decided to go for it. We did cancel the sleep study being that he was recovering from RSV it would have been a complete waste. We started our visits off with Sara Plager, the Speech and Language Pathologist. She deals with PWS patients all the time, so we wanted an evaluation with her to see where Cade was at with Speech. He cooperated, for the most part. He has such a nice vocabulary, but only uses it when he wants to. He obviously gave her enough of what she wanted to see though because she was very pleased. She said to keep doing whatever it is we are doing. She doesn't sugar coat things at all, so hearing this made us feel really good. Speech is more often than not a big delay in P...

I'm posting tonite from my phone because I am too tired to get the computer. If words are spelled wrong I am sorry...can't use spell check on my mobile blog. Dumb! Anyways, as most of you know we have been home since Tuesday. Thanks to all of you who lifted Cade up in prayer. We really appreciate the support more than you know. He is getting better each day.I have been watching Cade like a hawk...his breathing is not totally normal yet. Guess it doesn't help that today he fell on his head and panted for a half hour or so. We were at my parents and my brother was singing this ridiculous song and Cade was standing on the barstool( I know, accident waiting to happen) i was too busy watching my brother and bam...poor guy fell. I feel like a horrible mom when that stuff happens, but it happens. I got another phone call today and it was very promising. It was a response to one of my many e-mails telling our recent incident and story. I will give more specific details as they come...

Guess I will start from the very beginning...10 days ago I brought Cade to the Pediatrician because he had been irritable the night before and I wanted to be sure to stay on top of whatever may be coming on. I knew it had to be a touch of something Carter had, since he had been sick for about a week prior. No real diagnosis for Carter, tonsils were huge and ugly, Strep swab was negative so it was said to be tonsillitis and gave antibiotics. When Cade was seen on the Friday, his throat looked nasty and so they swabbed, Step was positive. Confusing, but we figured well that is what they both have, just must have been too early to show a positive when Carter was seen. Ok, so both had antibiotics through the weekend. Carter's energy and personality started to come back, but he still had a horrible cough. By Sunday Cade was starting to get a little congested. Monday we woke up and his breathing was really rapid. I watched it and eventually got worried...

Cade's doctors and I went through hell with Blue Cross trying to get the vaccine to prevent RSV approved. He had it last year, but this year criteria wasn't met. Hi Aimee, I know it was not your call to deny my son, Cade of the Synagis but I have your contact info. I would really like this to make its way to the doctor I spoke with regarding his decision to "follow guidelines" and deny Cade. Cade didn't "meet criteria" yet now we are in the ICU because he is in Respiratory Distress due to, yep you guessed it...RSV! As a Mom of a child with Special Needs it is my duty to fight for my child to get whatever he can to help prevent situations like this. Knowing there is a vaccine that could have prevented this battle we are facing infuriates me! We PAY insurance for a reason and to be denied something that is so critical to my child is nonsense. Underlying respiratory issues, history, Prader-Willi Syndrome( educate yourself on this syndrome, you may not h...

So, Carter has been sick for about a week now..slowly getting worse. Finally went to the Doctor Tuesday when he woke up with pink eye in both eyes. The outcome was Tonsillitis, we have been treating with Antibiotics and drops for the pink eye(Oh what fun that is). This is the sickest I have seen him..probably ever. So congested on top of it all. Poor kid. I was contemplating on taking him back in before the weekend to see if he needs something more. Then, after coming home tonight and noticing both of Cade's eyes starting with pink eye..That pretty much confirmed it. They are both going in and hopefully Cade doesn't get the congestion part or at least not nearly as bad as brother. That party worries me more than anything. Congestion is our worse nightmare..as you know. The low muscle tone just makes it incredibly hard for Cade to fight. I hate the thought of him getting sick..but I knew it was to come. So, that is how I am feeling tonight. Just blah with both boys sick and the...

Ah, I really have had so many blog topics to write and tell you about, but finding time to actually sit down and do it is the hard part. I am slacking so bad. I didn't blog about Christmas, or New Years....I missed all of it. I am not going to recap, I will just pick up where we are lately. Well, as you saw in the previous post Cade is starting to walk..Yay! We have pushed for this for so long it seems. He definitely still has to perfect things and find his balance. He is not independently walking yet for sure. Just baby steps...very cute, giggly baby steps. He thinks it is a game now when we say Cade, walk to ...whoever... I am glad he no longer despises it. He is gaining his confidence, slowly but surely. I think something else worth blogging about is that I was able to find some part-time work. I was never really looking, because although extra income would be nice I know I just can't commit to the typical set hours, set schedule type position. I just happen to see a FB upda...

OK, So did everyone get to see this on Facebook?? Cade did it, He took 7 steps yesterday!!! This is such an awaited milestone. It is of course just baby steps and he still has to master and accept the whole walking thing. But to see him actually do it was just surreal. I knew he was capable, and knew he would do it one day...but it was still wonderful. When you wait 19 months for your baby to walk to you it is breathtaking when those first wobbly steps begin. Oh and guess what...we practiced already today and nope, he didn't forget. Yay! Be on the lookout for lots of walking videos coming soon to a blog near you....