tag:blogger.com,1999:blog-91391184910536690262024-03-05T01:48:36.254-08:00Schizencephaly Awareness WeAreRare.orgThis is a blog about my journey with Noah and a rare disorder called Schizencephaly.
I share stories of other children, Families, and of course resources for families.
We Are RARE Is a non profit for Children and young adults suffering from a very rare neurological disorders like schizencephaly. Noah is 13 and missing over 40% of his brain .triciahttp://www.blogger.com/profile/10395550625034155990noreply@blogger.comBlogger109125tag:blogger.com,1999:blog-9139118491053669026.post-74165845101522841642017-12-17T05:34:00.001-08:002017-12-17T05:34:46.161-08:00My Beautiful Brain 2017 convention<iframe allowfullscreen="" frameborder="0" height="270" src="https://www.youtube.com/embed/3jKTFElxkUA" width="480"></iframe>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-9139118491053669026.post-44144748665840731592017-08-19T05:57:00.000-07:002017-08-19T05:57:13.607-07:00 PTSD/Anxiety and special needs <br />
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Certainly we love sharing stories, pictures and updates about our day to day and our children in therapy... all the things that we're supposed to do and share when you're on social media. Building connections.<br />
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But the truth is is that some of us do have high levels of anxiety PTSD stress and social anxiety over the simplest things that can be triggered by just about anything. A conversation can take a drastic turn, social media is a great place to keyboard scream then block, walk away and feel a little better about yourself. Most special needs drama I see occur are from people that don't necessarily like to be upset or angry... Rather just may seem a little more fragile than another parent.<br />
Even a simple outing can be triggering depending on the day before or the morning. Hell you may even just get a trigger first thing when you wake up in the morning that sets up the environment for the rest of everyone else's moods. And our energy's do connect so if you're putting negative energy out it is radiating to those around you. That's why we feel a need to run, walk away or get us time. We are actually trying to escape our own energy.<br />
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Most of my stressors are products of my surroundings. The things I cannot control and they affect my physical well being. Recently I met with an essential oil person. I did an analysis and I told her prior that I hated lemon grass but am always drawn to it. Wouldn't you know it was one of my top 5 oils needed. Now, the fascinating part is this. Guess what was in noahs top five? Three stressors, physical and emotional links to the same oils as me. I spend 99% of my time with him so this proves even more our energy is transebding and viral. Energy matters. <br />
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Why I worry for my special needs mamas and dads....<br />
What you don't see is a whole lot of parents especially in Special Needs communities talking about the Stress and Anxiety that we suffer from. I myself having lost someone with PTSD and stress anxiety social anxiety and depression, I have to be aware of the fact that those days can turn into weeks and if I'm not careful those weeks can turn into much longer.<br />
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I have a select few friends that I actually do talk to that know me on a personal basis. Those are the parents that I can talk to openly about my stresses and they talk to me about their stresses and they're so vast and various between us, some of us worrying about seizures and how to control them other people are worried about behavioral issues and how to breakthrough to their child. Some parents may be worried about how their child is going to act in high school or or respond to being around their peers. I can't even tell you things anxiety some parents must have with cases that are not as severe as my sons and they have to think about driving and jobs and potentially their child wanting to move out to venture out into the world we've watched be cruel at times. Those are scary things that we as parents just don't talk about enough.<br />
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Sometimes when I'm asleep I wake up in a full-on panic attack. It could be when I'm laying here alone it could be in the middle of doing absolutely nothing but I feel this tremendous fear that rushes over my body and the next thing you know my peripheral vision is gone and I feel like I'm floating through a tunnel and a fear of death is there right next to me something awful. I can't run! I just tell my body I'm going to die. For some moments I can't figure out if I'm actually having a heart attack, if I'm actually having a panic attack or am I really dying. I have even gone so far as to run around the house because I was convinced I didn't have a heartbeat.<br />
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I imagine that's some kind of triggered anxiety and PTSD over the fact that should anything ever happen to me God forbid... Oh my gosh I just don't even know how I would even wrap my head around what would happen to my son. It's an ongoing battle in my head between caring for my child who constantly needs me, and my own Stress and Anxiety and work and all the things that I have to accomplish everyday to be a parent and a provider.<br />
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I do wish the lines of communication were open more freely about anxiety and PTSD. My concern is that I thinks it's a more of recent suicides and especially celebrity deaths have brought to light things that I've known about for years now since my own father suicide. But depression and anxiety are entirely different with the ability to morph. For the moments we live in shadows and we have these sweeping rushes of fear we have to either talk ourselves out or be misdiagnosed with depression. And let me just say it's very difficult to talk to family or friends that just don't relate to the kind of stress and triggers that you deal with on a daily basis.<br />
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There is absolutely no way to define a seizure to someone that's never seen one. There is no way to explain feeding dysfunction and feeding tubes to someone that has never seen one without scaring them and, or the person being very open-minded.<br />
I'll admit it wasn't even until recently that someone had mentioned to me that I have anxiety and PTSD. For years I had known that my father and some members of my family suffered from different forms of depression. I would go days where I could go without talking to someone or multiple people,.I could probably go weeks if I allowed myself. But that day I was sitting across from a friend who also is a strong advocate in the Cannabis community. As we were talking about different triggers and things that cannabis helps because that's what my job entails, it was him he was sad Tricia you do have PTSD and I have never really seen someone look at me so certain and so sure of what they were saying not even a doctor in the almost 17 years that I've had a special needs child. So fro me I was able to go home and start researching PTSD and anxiety instead of depression which was a complete wrong diagnosis for me but yet the doctors have been telling me for years that's what I was suffering from. I never listened to them because I knew. But how many misdiagnosed people are out there? Maybe my family wasn't suffering from depression all those generations out, rather ptsd and stress.<br />
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I think the most awakening part about it all is the fact that I've had these underlying stressors in my life for so long and didn't realize it because no one had ever told me that there could possibly be something else that was holding me hostage to my own demons. Depression was NOT a label that existed for me. And that day I was able to finally figure out so much about myself and why I live with certain triggers and why I deal with certain days that I warn people ahead I'm triggered today!<br />
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It wasn't that I didn't want to go places it was I had no idea what kind of mood I was going to be in or when I was going to snap because there were and are many times that everything will be perfectly fine and then I will just snap into a mood that was triggered by something but I can never quite place it. I owe that friend a lot. If anything the ability to just have some control back in my life and understand why I have anxiety in the first place.<br />
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There are situations and circumstances in my life and in the life of many of my friends that we cannot control and we know at any given moment things can change drastically. If that's not enough to trigger some sort of PTSD in somebody well I just don't even know what PTSD is I guess. At least now I know how to approach friends that might be dealing with the same thing I am. We live a complex life filled with roller coaster emotions. Most of the time there's some kind of underlying fear about the unknown. If not an always lingering party crasher hanging around your inner peace.<br />
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Which brings me back to the whole fact of what PTSD is and how it's been associated with combat Warriors and people with very traumatic and experiences such as mass shootings things like that. I imagine that's much like our life in some way because at any moment we could be ambushed or attacked by some unknown forces that is just a mystery and part of our child's diagnosis. Am I awful for admitting what all parents want to say? I have PTSD and severe anxiety because of my childs diagnosis. There I made it easier for you all to breathe. We are all still ok even after saying our child or lied ones unknown hurts our hearts, pains us deeply and cuts us raw. Who wouldn't have anxiety over that?<br />
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I think the lines of communication should be open I think there should be platforms for parents to talk about things. I think that family judges us. I think that friends don't understand because maybe we don't let them in our world enough. And you know what? that's okay to because maybe we're still dealing with a little bit of stress and Anxiety over the things we still can't control in our lives. And no one likes to appear weak when we have to keep a brave face at every moment.<br />
I think you're very brave. We all are but we are allowed to be weak to. I imagine that gives us the balance that we need to cope with our own PTSD Stress and Anxiety. And if we talk to one another about those things we may just pull somebody out of the shadows at their weakest moment.<br />
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-9139118491053669026.post-80282928382600208672016-06-01T05:08:00.001-07:002016-06-01T05:08:56.072-07:00Island dolphin care sixth trip<p dir="ltr">This year in May we celebrated Schizencephaly awareness day and noahs sixteenth birthday with two other Schizencephaly families at noahs favorite place....Island dolphin care.<br>
So many great memories were made this year we've decided to take him back this August making sure we continue his ongoing interest in the program.<br>
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watch David Harris send a special message to Noah</div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-9139118491053669026.post-30232014563832193982015-02-17T08:31:00.003-08:002015-02-17T08:38:26.150-08:00February We Are RARE Schizencephaly Super Hero of the Monthhttp://wearerare.org/2015/02/17/ethan-februarys-schizencephaly-super-hero-month/<a href="http://wearerare.org/2015/02/17/ethan-februarys-schizencephaly-super-hero-month/"></a><br />
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Ethan! February’s Schizencephaly super hero of the month</h1>
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Posted on <a href="http://wearerare.org/2015/02/17/ethan-februarys-schizencephaly-super-hero-month/" rel="bookmark" style="color: #666666; text-decoration: none;" title="2:52 AM"><time class="entry-date updated" datetime="2015-02-17T02:52:58+00:00">02.17.2015</time> </a><span class="byline">by <span class="author vcard"><a class="url fn n" href="http://wearerare.org/author/tricia/" rel="author" style="color: #666666; text-decoration: none;" title="View all posts by Tricia Dennis">Tricia Dennis</a></span></span></div>
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Parents Terrie and Larry Randolph write<br />
Ethan Wayne Randolph born in Dayton, Ohio on Nov 3, 2008 with Schizencephaly. We initially were told of his condition during an ultrasound at 7.5 mos gestation. At that time we were told the best thing we could do not only for Ethan and ourselves but also for society would be to go out of state and have a late term abortion. The Dr stated it would be for the best as he would most likely be nothing more than a burden and would never have a quality of life as he would most likely not ever speak, play, walk or anything “normal” babies and children do. To this day I can still vividly hear those words being spoke to our family. We knew Ethan was a special gift that was being given to us and we were going to keep and love him for as long as we could even if it was to be for a short time. Less than 12 hrs old he was sedated for the first time and transported to children s hospital for an MRI to confirm the diagnosis.<br />
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The Dr couldn't have been more wrong with what he would do and could do! We couldn’t be more proud of our little guy and all the progress and obstacles he has faced and overcome. He started therapy at 4 weeks old having PT and OT. He has since had aqua therapy and speak therapy as well. I wholeheartedly believe that he is doing as well as he is today because of his willpower to fight through the struggles and all of his amazing therapists who have worked with him over the years. To us he is a “normal” 6 yr old little boy who has a different kind of life. He has been through a lot but continues to fight the battles life throws his way. He started walking when he was 3 and just recently underwent a club foot with tendon release and transfer surgery on his right foot and leg which has had an amazing impact on his walking ability</div>
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<span style="font-size: 16px; line-height: 20px;">Along with his Schizencephaly he also has several other diagnosis such as Cerebral Palsy, Polymicrogiria, Scoliosis, Sensory Processing Disorder to name a few. These will never hold Ethan back in life because he will not allow them to. Today he is such a happy little boy who just wants to show everybody how much they are loved, just as we have always shown him. He enjoys doing things other kids do, he just has to work an little harder. He loves to run and play and get into mischief as any child does. I have always said he is my littlest hero from day one. He may only be 6 but he is such a wonderful and special little boy who has probably taught me more than I have him.</span><br />
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Congratulations Ethan! You are a true super hero</div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-9139118491053669026.post-16068394901180743082014-11-25T18:07:00.001-08:002014-11-25T18:55:05.690-08:00Scoliosis and Schizencephaly <p dir="ltr"> It has been two weeks on Wednesday since Noah's spinal fusion and I will admit fear was a huge issue with this one.<br>
Never did I imagine seeing my little boy look so banged up. His eyes were bloodshot, black and blue with a very swollen face. <br>
The night before I was prepped with the fact Noah very well may not make it through or quite possibly require a trach for the rest of his life.. Scary and sobering all at the same time.<br>
After xrays the day before we learned Noah's scoliosis had reached 94-97 degrees which is 40 degrees more than just a year ago which convinces me that scoliosis is indeed a huge part of schizencephaly. We waited until Noah was old enough to avoid multiple surgeries through the rest of his life....one and done! But holy cow scoliosis is hell. The constant fighting it, struggling to make our own braces, 6 years or positioning and holding off to avoid going back under the knife. It would appear that all that hard work made a difference and Noah will never need another surgery after this.</p><p dir="ltr">This helps further research and awareness even more since we can now confirm through the multiple families that have faced this issue alongside Schizencephaly that it is appropriate to say this is another underlying factor that is quite likely and hopefully with the awareness, preventable<br>
This was one of those surgeries that no matter how hard we prepped we could not possibly tell if Noah was comprehending.<br>
Looking into his big blue eyes I shed many tears but much to my surprise he seemed OK with the hospital check in.<br>
Somehow I would like to believe he was in so much pain he had decided that the past has proven he knows he can trust me and his brother with these medical decisions.<br>
Surgery was November 12th exactly 1 year to the hour as his hip surgery last year (worst recovery ever). As we sat together the night before I just held him knowing I would never hold him that way again after the rodding. It was OK. I knew this one was a necessity for his growth.<br>
He would look up at me and grab my hand like he was acknowledging my struggle with this and he would squeeze tight as if to comfort me, which made me feel assured he understood more than I thought.<br>
Surgery day they rolled him into holding at 8 am and my stomach was full of knots. I kept wisping his hair in my hands and hoping the red face and difficulty breathing would soon be lessened after this all.<br>
Around 3 pm they came in to say Noah was out and breathing on his own. I always say some of these moments are the most profound so far but this time I truly meant it. I could not believe his little body that had gone through over 23 surgeries to date had once again proven the drs wrong. But then again, this is my son we are talking about . <br>
When I walked into PICU my jaw dropped at how awful he looked. I broke down in tears watching the breathing tube attached to him and the line coming out of his neck. I kept saying "why does he look so bad?" And the staff assured me this was normal and he was already breathing 85% on his own.. <br>
The next few days Noah's smile returned and many things were noted with him including no more red face. As described to me and big brother Noah's neck was at high risk for suffocation. His neck was so twisted he was much worse than the Dr ever suspected. Although they did not know if the neck would correct they were pleased that it in fact had straightened and he was no longer red or struggling for air . <br>
He was also breathing through his nose for the first time in three years. His whole quality of life was changing and to me it is nothing short of a miracle . <br>
I have to applaud the surgical team at Miami children's for their amazing work and for helping Noah have the quality of life he deserves. If it were not for their belief in being able to fix him (something local drs said was too dangerous) I don't think he had much longer of this life with his oxygen being compromised daily.<br>
The life of a special needs single mama never is easy. We smile through tears and walk through many storms holding our head high and leaving so much normalcy behind but it is always worth it.. </p>
<p dir="ltr"> I do have to say his strength builds mine up. Although I sacrifice many things like hanging out with friends, drinking more than one drink in case anything should happen and we won't go into the dating world because that is just a nightmare, it is always worth it.. The way I see it is that these sacrifices mean so much more than an hour of this or than an inconsistent relationship that is not a given. Noah's love and hope is what keeps us all going. His will teaches me that the kind of love he is filled with is the purest of any I've ever known and I doubt I could ever find anything quite as amazing as what I feel looking at him.<br>
So here we are now today looking back at the anxiety and stress leading up to this major surgery and we are good. He is good, he is smiling and playing again. He is aware things have changed anatomically but he gets it, he is breathing better and looks like a new child. One that is not in pain and struggling for air. And I am so proud of him for proving to me once again what a strong and brave warrior he is.<br>
So although the small things that were during and after this surgery were bumpy and kind of crappy they aren't worth worrying about.. The only thing that will continue to matter in our world is that we always do what is best and right for our children. Because ultimately nothing else really matters but family.</p>
<p dir="ltr"> And our little family is amazingly strong and stable.<br>
My love and thanks to many people that were by my side and made this so much easier.<br>
Nicole Molino for coming up to the hospital the day of surgery and making me smile through the worry.. <br>
Denise who helped me understand her surgery and what to expect<br>
Stephanie Byrd for coming up to visit and getting me a discount at the Walmart (:<br>
Miss Stephanie Ziemann for listening to me bitch and talking g me through everything when I was about to walk out the hospital (trach talk)<br>
Raymond for texting every day to check in on me and in on Noah</p><p dir="ltr"> Noel for multiple reasons.</p><p dir="ltr">Father Andy for being amazing </p><p dir="ltr"> All the prayers, calls, cards, and posts the day of surgery. They were all noted and very appreciated. Thank you!</p><p dir="ltr">
Regina and Mark for helping Noah get his seizures controlled until we can get the heck out of Florida.<br>
And of course Dr harry shufflebarger who has the hands of an angel and decided to help Noah when no one else thought he was worth it.. <br>
All of you are my ✊ rock and I will never forget your help </p>
<p dir="ltr"> Noah- 23<br>
Schizencephaly- 0</p>
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<b> I hope others can understand that special needs diagnosis's can be like mourning a death but our stories remain open.</b><br />
<b> Please get a copy and share with others dealing with depression and guilt associated with any uniquely gifted child.
</b><a href="https://www.createspace.com/4979806"></a>
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<a href="https://www.createspace.com/4979806" target="_blank">https://www.createspace.com/4979806</a><br />
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-9139118491053669026.post-66636804060522592832014-09-18T14:28:00.001-07:002014-09-18T14:29:41.405-07:00Schizencephaly Super hero of the monthWe are RARE is excited about our new Super hero highlight on our website.<br />
We welcome families to sign up their children and allow us to share stories and pictures for a month as our special family .<br />
Your family member will also get a custom made super hero mask as they are joining an elite force of warriors<br />
Please sign up here.\<br />
<a href="http://www.wearerare.org/rare-super-hero/">http://www.wearerare.org/rare-super-hero/</a><br />
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-9139118491053669026.post-48733634495439366082014-09-08T03:26:00.001-07:002014-09-08T03:31:47.344-07:00Sunset in the keys with noah <p dir=ltr>What a wonderful vacation swimming with the dolphins with Noah's schiz buddy Andrew </p>
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No more reflux and he's gone from 44 to 72 pounds </p>
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He started out at 44 lbs in 2012. The decision was scary and took a <u>large</u> bit of my pride knowing that this was the only solution that could possible keep him alive.<br>
Of course the surgery was easy enough. But I wanted to continue Noah's feed via mouth as well since it was important for me to keep Noah eating like he had and just adding healthier foods via the tube and liquids to keep him hydrated.<br>
The sent us home with his first formula called omni lite. That one was fine at first but Noah started with some vomiting after a few weeks so I asked the GI to find another one that would suit his sensitive tummy.<br>
Next was vital 1.5 oh boy did this one cause havok on his body... Within a few days this horrendous smell was coming from him. I smelled like straight up ammonia. That smell was so intense it was enough to gag me.<br>
The GI sent us to get tests to find out if his pancreas flwas failing when I kept insisting it was the formula not him.<br>
Guess what? Tests came back normal.<br>
I refused any more formula after that test knowing I had to find something better to keep him healthy. I started with doing bone broth. That helped clean his gut out and got us back at base line.<br>
After that I got an industrial type blnder from blendtec and decided to start blending all Noah's foods myself.<br>
To my surprise Noah had gone from 44lbs to 53 in two months using this method.<br>
The next GI visit had us so frustrated because once again they wanted to add yet another crap formula to increase his weight even more (even though my method was clearly working)<br>
I agreed to try pediatric compleat this time since it was based off of a whole food diet concept <br>
This one was the worse. Within a day my 6 year seizure free child began seizing uncontrollably and the ammonia smell was back.<br>
Out went that formula! The GI still insisted on trying more when I finally told them it was my way or he will find a new GI.<br>
These drs simply do not understand the need for special needs children to have healthy and nutritional foods and insist of throwing chemically made formulas down his throat. The man made sugars and GMO in these formulas are not even substantial for an animal let alone a special needs child dealing with complex syndromes.<br>
Since our formula days are now far behind Noah is no longer seizing and having reactions. His weight is almost 70lbs all from real foods and no artificial man made ingredients.<br>
He eats better than anyone in my family and as a result has not needed miralax or anything to help him go to the bathroom.<br>
His quality of life has improved tremendously and he is no longer producing ammonia smells.<br>
  There is no simple coincidence that these formulas and my sons health were declining. The fact remains the whole food diet is rich in natural vitamins and healthy foods.<br>
Although his consumption is over 4000 calories a day he is gaining nicely and his osteoporosis has improved! And no Kore seizures <br>
First picture is Noah at 44 lbs and second is Noah today a little over 70 lbs.<br>
The proof is in the pictures.<br>
</p>
<div class="separator" style="clear: both; text-align: center;"> <a href="http://lh4.ggpht.com/-rUUEN86MSRY/U9pwOVFEEFI/AAAAAAAAPF8/QpgORV94QEU/s1600/IMG_20131226_6.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="http://lh4.ggpht.com/-rUUEN86MSRY/U9pwOVFEEFI/AAAAAAAAPF8/QpgORV94QEU/s640/IMG_20131226_6.png"> </a> </div><div class="separator" style="clear: both; text-align: center;"> <a href="http://lh5.ggpht.com/-IfgeAXK4xe4/U9pwPtc8DQI/AAAAAAAAPGE/GlgRvfptFLM/s1600/IMG_20140711_5.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="http://lh5.ggpht.com/-IfgeAXK4xe4/U9pwPtc8DQI/AAAAAAAAPGE/GlgRvfptFLM/s640/IMG_20140711_5.png"> </a> </div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-9139118491053669026.post-59229770364952996202014-07-08T20:51:00.001-07:002014-07-08T20:51:34.436-07:00Pep talks with my little warrior <p dir=ltr>Scoliosis surgery is looking like a MUST<br>
Me and Noah have been staying positive and talking all about it.<br>
</p>
<div class="separator" style="clear: both; text-align: center;"> <a href="http://lh6.ggpht.com/-dtXxS1MQr4w/U7y8PX6829I/AAAAAAAAPE8/fZJ2E4KsmBM/s1600/IMG_20140708_5.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="http://lh6.ggpht.com/-dtXxS1MQr4w/U7y8PX6829I/AAAAAAAAPE8/fZJ2E4KsmBM/s640/IMG_20140708_5.png"> </a> </div><div class="separator" style="clear: both; text-align: center;"> <a href="http://lh6.ggpht.com/-5Q2-krhYiAw/U7y8QrfX72I/AAAAAAAAPFE/TRi3MSf9G7U/s1600/IMG_20140708_6.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="http://lh6.ggpht.com/-5Q2-krhYiAw/U7y8QrfX72I/AAAAAAAAPFE/TRi3MSf9G7U/s640/IMG_20140708_6.png"> </a> </div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-9139118491053669026.post-39403721125925479212014-06-01T07:46:00.001-07:002014-06-01T07:46:57.847-07:00Dolphin madness ..noahs trip to see squirty<div class="separator" style="clear: both; text-align: center;"> <a href="http://lh6.ggpht.com/-WL8efBD6wsc/U4s8wNaC8qI/AAAAAAAAPB4/9K8tJ581Ioo/s1600/20140523_195116.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="http://lh6.ggpht.com/-WL8efBD6wsc/U4s8wNaC8qI/AAAAAAAAPB4/9K8tJ581Ioo/s640/20140523_195116.jpg"> </a> </div><div class="separator" style="clear: both; text-align: center;"> <a href="http://lh5.ggpht.com/-YQ2wW_eIlfo/U4s8x_dKZEI/AAAAAAAAPB8/PfUZl5ti8Bs/s1600/20140521_190614.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="http://lh5.ggpht.com/-YQ2wW_eIlfo/U4s8x_dKZEI/AAAAAAAAPB8/PfUZl5ti8Bs/s640/20140521_190614.jpg"> </a> </div><div class="separator" style="clear: both; text-align: center;"> <a href="http://lh5.ggpht.com/-KNMwfFQTkkk/U4s80ri39kI/AAAAAAAAPCA/wmDv7XhfrVo/s1600/20140519_105405.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="http://lh5.ggpht.com/-KNMwfFQTkkk/U4s80ri39kI/AAAAAAAAPCA/wmDv7XhfrVo/s640/20140519_105405.jpg"> </a> </div><div class="separator" style="clear: both; text-align: center;"> <a href="http://lh4.ggpht.com/-krHELiRfvD0/U4s83scGbwI/AAAAAAAAPCE/IjSkhnBv6Nw/s1600/20140519_105615.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="http://lh4.ggpht.com/-krHELiRfvD0/U4s83scGbwI/AAAAAAAAPCE/IjSkhnBv6Nw/s640/20140519_105615.jpg"> </a> </div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-9139118491053669026.post-68523978802899045412014-05-08T18:52:00.001-07:002014-05-08T18:52:55.361-07:00It's the moment I have waited for for a very long time Tears of joy!My little warrior is communicating!!<br />
I just cried so hard.
<iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/OZOFVnjMmzY" width="420"></iframe>
<iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/YXrh3Nt_UqM" width="420"></iframe>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-9139118491053669026.post-15442555572958668222014-04-17T11:36:00.001-07:002014-04-17T11:36:37.898-07:00Swimming with the dolphins<p dir=ltr>In 32 days Noah will return to island dolphin care to meet his friends for the fourth time.<br>
He is so very excited. Each time we go I see all sorts of improvements and I know with him being so vocal lately he will be pushed even harder.<br>
This boy is my hero. Every day he teaches me how special life is. How we should never take anything for granted and mostly how amazing the mind is.</p>
<div class="separator" style="clear: both; text-align: center;"> <a href="http://lh6.ggpht.com/-iq5L9iNhlQo/U1AfM6giOBI/AAAAAAAAO-U/v6eIS3e7IFY/s1600/IMG_20140416_1.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="http://lh6.ggpht.com/-iq5L9iNhlQo/U1AfM6giOBI/AAAAAAAAO-U/v6eIS3e7IFY/s640/IMG_20140416_1.png"> </a> </div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-9139118491053669026.post-68324616920226099992014-04-13T10:29:00.000-07:002014-04-13T10:32:27.142-07:00Noah working on talking His amazing year of hard work.I cannot even express the feeling that I have knowing Noah is trying so hard to speak to us.
He is saying "I love you", "More" and Yay as well as hi often now.
Makes my heart dance.
Noah says " Yay"!
<iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/OVKWXgAd4es" width="420"></iframe>
<br />
noah says "I love you"
<iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/_fRfwirTBT4" width="560"></iframe>
<br />
working on his Ipad
<iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/1VelbNr44sw" width="420"></iframe>
<br />
blowing Kisses
<iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/XLmMzOBmcKc" width="420"></iframe>
<br />
saying "more"
<iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/-tnnPNiQF2w" width="420"></iframe>
<br />
signing "N" for Noah
<iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/DEBWI3mMOAo" width="420"></iframe><br />
<br />
<br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-9139118491053669026.post-12373706076527459662014-04-05T16:53:00.001-07:002014-04-05T16:53:49.494-07:00Baseball happiness <p dir=ltr>Nothing makes mama more proud than seeing my little boy defy the odds and reach for the stars <br>
Never would I imagine the joy he would get from playing baseball. He makes my heart melt.</p>
<div class="separator" style="clear: both; text-align: center;"> <a href="http://lh3.ggpht.com/-gik33VUGQWU/U0CXe5QPmRI/AAAAAAAAO80/_H2yK0snXO8/s1600/20140405_113508.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="http://lh3.ggpht.com/-gik33VUGQWU/U0CXe5QPmRI/AAAAAAAAO80/_H2yK0snXO8/s640/20140405_113508.jpg"> </a> </div><div class="separator" style="clear: both; text-align: center;"> <a href="http://lh6.ggpht.com/-LdaiYvC55ZY/U0CXgwLmM_I/AAAAAAAAO88/eeZmYC7bczQ/s1600/20140405_130049.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="http://lh6.ggpht.com/-LdaiYvC55ZY/U0CXgwLmM_I/AAAAAAAAO88/eeZmYC7bczQ/s640/20140405_130049.jpg"> </a> </div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-9139118491053669026.post-48818240102878689012014-03-15T09:59:00.001-07:002014-03-15T09:59:30.540-07:00Noah meets Cheryl hines and Rachel Harris<p dir=ltr>So exciting to meet people that support buddy ball baseball.<br>
Noah was such a flirt</p>
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Crocheted Awareness Handmade</div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-9139118491053669026.post-70950676887408829762014-02-03T22:00:00.001-08:002014-02-03T22:07:42.871-08:00Noahs brittle bone and healing.<p>Since Noah's surgery things have been on highs and lows.<br>
His healing seemed to go quickly although after a few weeks I wanted to pull my hair out and regretted it I am very glad We went through with it now.<br>
However We are not out of the woods yet. As with all special needs mom's I always see a new obstacle in the horizon.<br>
Noah still is challenged by brittle bones. Recently rushed to the E.R for possible hairline fractures in the lower ribs from his scoliosis vest.<br>
We have yet to find any fractures but he remains fussy and cringing in pain.<br>
We can only pray This is going to pass and there is nothing too serious going on for him<br>
On a great note. His communication is doing amazing. Every day he teaches me new words he is working on. And continues to smile No matter What he goes through.<br>
He is the complete definition of a warrior.!</p>
<div class="separator" style="clear: both; text-align: center;"> <a href="http://lh6.ggpht.com/-2JVIL5eTxmg/UvCDgYnoiHI/AAAAAAAAO4U/X-kSKIkS6lw/s1600/IMAG8507.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="http://lh6.ggpht.com/-2JVIL5eTxmg/UvCDgYnoiHI/AAAAAAAAO4U/X-kSKIkS6lw/s640/IMAG8507.jpg"> </a> </div><div class="separator" style="clear: both; text-align: center;"> <a href="http://lh6.ggpht.com/-QiiTRXu1Brw/UvCDjG-FstI/AAAAAAAAO4c/CsC-9jzyKY8/s1600/IMAG8468.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="http://lh6.ggpht.com/-QiiTRXu1Brw/UvCDjG-FstI/AAAAAAAAO4c/CsC-9jzyKY8/s640/IMAG8468.jpg"> </a> </div><div class="separator" style="clear: both; text-align: center;"> <a href="http://lh6.ggpht.com/-2fESLGb8HCA/UvCDmL9he1I/AAAAAAAAO4k/Qn1tvrmQTMA/s1600/IMAG8392.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="http://lh6.ggpht.com/-2fESLGb8HCA/UvCDmL9he1I/AAAAAAAAO4k/Qn1tvrmQTMA/s640/IMAG8392.jpg"> </a> </div><div class="separator" style="clear: both; text-align: center;"> <a href="http://lh4.ggpht.com/-N5lK6THPB8o/UvCDpYNepUI/AAAAAAAAO4s/1Ke-UB5fXvo/s1600/IMAG8174-1-1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="http://lh4.ggpht.com/-N5lK6THPB8o/UvCDpYNepUI/AAAAAAAAO4s/1Ke-UB5fXvo/s640/IMAG8174-1-1.jpg"> </a> </div><div class="separator" style="clear: both; text-align: center;"> <a href="http://lh6.ggpht.com/-4SoOpWQvaPA/UvCDqmhjVEI/AAAAAAAAO40/XheCj3QEzDU/s1600/IMG_20140119_5-1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="http://lh6.ggpht.com/-4SoOpWQvaPA/UvCDqmhjVEI/AAAAAAAAO40/XheCj3QEzDU/s640/IMG_20140119_5-1.jpg"> </a> </div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-9139118491053669026.post-25184500610324025382014-01-14T14:42:00.002-08:002014-01-14T14:42:43.740-08:00Our newest Video<iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/pwUuVYnmGng" width="560"></iframe>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-9139118491053669026.post-87440276164639802452013-12-24T09:27:00.001-08:002013-12-24T09:27:09.648-08:00Merry christmas <p>We made it through hip surgery and Noah wants to wish all his friends a very merry Christmas!! </p>
<div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEja_rqb4-OdFzPVQ9jjmVWJAsoFRqfd6bxmmJKTZx721XZeLS3tUKowL9zQGlFqiphRaWLQRgYUjmzYl-7z_aTQqEfoN_8rhOjdGmkMvUzN8J9gWXGxtkZ1EI-Di7eOZZFStTpSTFyvMkY/s1600/ponpon_christmas_20131224_105514.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEja_rqb4-OdFzPVQ9jjmVWJAsoFRqfd6bxmmJKTZx721XZeLS3tUKowL9zQGlFqiphRaWLQRgYUjmzYl-7z_aTQqEfoN_8rhOjdGmkMvUzN8J9gWXGxtkZ1EI-Di7eOZZFStTpSTFyvMkY/s640/ponpon_christmas_20131224_105514.jpg"> </a> </div>triciahttp://www.blogger.com/profile/10395550625034155990noreply@blogger.com0tag:blogger.com,1999:blog-9139118491053669026.post-74689125049406389282013-11-16T11:08:00.001-08:002013-11-16T11:08:07.565-08:00Going home<p>After a long recovery at Arnold Palmer Noah is being released. I am so glad Noah has been so strong throughout this entire deal. I was so very worried about this all for weeks and once again Noah had kicked Schizencephaly in the butt!<br>
Smiley boy is happy to be heading home after three days of pain and hospital. Mommy is very very happy.</p>
<div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWOVjKtzye57Yos1umCZzphxGgzoe0Ys_Q9Ej0wtJdj2JlTqh3TCGBAPZqR3AdbZzEzL_cEE5xaj_xa9RRK_kB4UUUgrm4d6UUzMj2RFQnJ-Ge02s73Yr6fYHMvkXW4uqT8nxsku1oaKk/s1600/IMG_20131116_2.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWOVjKtzye57Yos1umCZzphxGgzoe0Ys_Q9Ej0wtJdj2JlTqh3TCGBAPZqR3AdbZzEzL_cEE5xaj_xa9RRK_kB4UUUgrm4d6UUzMj2RFQnJ-Ge02s73Yr6fYHMvkXW4uqT8nxsku1oaKk/s640/IMG_20131116_2.png"> </a> </div>triciahttp://www.blogger.com/profile/10395550625034155990noreply@blogger.com0