tag:blogger.com,1999:blog-36931540345915649282024-02-18T20:28:27.711-08:00Jordan's DreamStories of life and love, so you realize you aren't alone!Cornflakegirlhttp://www.blogger.com/profile/08849351594745476417noreply@blogger.comBlogger125125tag:blogger.com,1999:blog-3693154034591564928.post-340379250098913632015-11-13T09:43:00.001-08:002015-11-13T09:43:23.126-08:00Epilepsy Awareness MonthNovember is epilepsy awareness month. It took me a long time to say that Jordan has epilepsy and now I advocate for research and a cure because bottom line is epilepsy sucks.<br />
<br />
Do you know what the faces of epilepsy look like? I do, it looks just like you and me.<br />
<br />
Here is a link to some facts about epilepsy, learn something new about the disease.<br />
<a href="http://www.cureepilepsy.org/aboutepilepsy/facts.asp">http://www.cureepilepsy.org/aboutepilepsy/facts.asp</a><br />
<br />
This is my daughter and she is the face of epilepsy: I love this picture because she is so natural in it and you would never no she has epilepsy.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKGEl9ejMCXxmzkcxb_qJiQmabUMLSJVk_OkR2pQSoytuTJoBAsqRHXk44Q_0wRWe6Me2jPiHeMmBmXN4VbRVV44NV6CNim0asKUZQhXQHikmcAHRYjvAydgBvf3Z2MIMwhw8bLy7ItQ/s1600/IMG_0167.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKGEl9ejMCXxmzkcxb_qJiQmabUMLSJVk_OkR2pQSoytuTJoBAsqRHXk44Q_0wRWe6Me2jPiHeMmBmXN4VbRVV44NV6CNim0asKUZQhXQHikmcAHRYjvAydgBvf3Z2MIMwhw8bLy7ItQ/s320/IMG_0167.JPG" width="320" /></a></div>
In an effort to raise money and awareness we are holding two fundraisers. 100% of all the profits will go to the Children's Miracle Network.<br />
<br />
First we have the calendar Fundraiser. These are pictures taken by members of my family. Jordan has been to all these places and having epilepsy has not stopped her.<br />
<a href="https://www.blogger.com/goog_1267892294"><br /></a>
<a href="https://www.createphotocalendars.com/Store/CMN+Fundraiser-7505979617">https://www.createphotocalendars.com/Store/CMN+Fundraiser-7505979617</a><br />
<br />
The other fundraiser is a TShirt sale. My middle child designed the TShirt to support his sister. If you are interested in TShirt sales please leave a comment or email me at cornflakegirl524@gmail.com<br />
<br />
This is the design of the TShirt:<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFZijUH_HkcCCbUdp29j_gGmmGJ359rqG84tc8J31Aab_E9WPCeCtKoaHL5L4_-zU3_Pu4ZvAiJIave8HXSMWrRa6PF49EDFR3bB71CwtuOBhhDjDMzPL04RyFKXa33JjKQo4WZh68Ng/s1600/FRONT-virtual+sample.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFZijUH_HkcCCbUdp29j_gGmmGJ359rqG84tc8J31Aab_E9WPCeCtKoaHL5L4_-zU3_Pu4ZvAiJIave8HXSMWrRa6PF49EDFR3bB71CwtuOBhhDjDMzPL04RyFKXa33JjKQo4WZh68Ng/s320/FRONT-virtual+sample.png" width="270" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXWiujsvsNw2H6cBALyBgP4tAADJDVDAeEqv_3QiESCLdK0dmFYC5Ui_REjPMDCC27fr1_cDp21Pw7lMTUxUTM1x6MwIvqP5AXe7wb72uTnEculg2hghgRu9VmKaadbjGfdfStNZiZtg/s1600/BACK-virtual+sample.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXWiujsvsNw2H6cBALyBgP4tAADJDVDAeEqv_3QiESCLdK0dmFYC5Ui_REjPMDCC27fr1_cDp21Pw7lMTUxUTM1x6MwIvqP5AXe7wb72uTnEculg2hghgRu9VmKaadbjGfdfStNZiZtg/s320/BACK-virtual+sample.png" width="270" /></a></div>
<br />Cornflakegirlhttp://www.blogger.com/profile/08849351594745476417noreply@blogger.com0tag:blogger.com,1999:blog-3693154034591564928.post-25877196606300668612015-07-27T17:25:00.000-07:002015-07-27T17:25:24.756-07:00It's GoneIn May of 2011 Jordan developed an autoimmune disorder in her eye. No one could tell us why although if we didn't get her to the doctor when we did she could have gone blind. I remember the first time we saw the doctor he said "Wow, you have a high tolerance for pain, if you were an adult you would have been her months ago."<br />
<br />
<br /><br />
PanUveitis is the eye condition that Jordan had. Had as in it is GONE! After 3 years of traveling back and forth to Boston, the doctor has released her and she doesn't have to go back for a whole year. After traveling there every 6 weeks in the beginning and then every 3 months for the following 3 years, we now can wait a whole year before we go back. I am so excited for Jordan and cannot believe it is gone. The doctor thinks it was a one time thing and that she won't get it again. Let's pray for that.<br />
<br /><br />
Training has been put on hold. The same day we found out Jordan's PanUveitis was gone I twisted my ankle. I was walking the dog and all of a sudden I was on the ground. The pain was unbelievable. I saw white, felt nauseous and thought I was going to pass out. As I sat there I thought can I walk, can I do this. I said to myself "I can go this." I got up and quickly realized I could not, my legs were shaking and I sat right back down. After another few minutes I got up and walked home.<br />
<br /><br />
I went straight into my room and laid down with my leg propped up. As I lay there I assessed the situation. 1. Did anything else hurt? No it was probably the pain that made me feel like passing out. 2. Was my ankle movable? Yes, it hurt like hell but it wasn't broken. 3. Could I walk on it? Yes, although painful I could wrap it and continue with my day. 4. What could I do to help with the healing process? I made turmeric and ginger tea with fresh turmeric and ginger root. I drank my tea all day and iced my ankle when I got home.<br />
<br /><br />
I have been reading Scott Juker's book "Eat & Run". He talks a lot about mind over matter and how our bodies can handle more than our minds can. As I was sitting on the ground I knew I had hurt myself but I also knew that I could get through this. So even though my training has been put on hold I think I am going to recover more quickly than I have in the past.<br />
<br /><br />
I am amazed at how well the turmeric and ginger tea has helped with the swelling and how great I feel. I cannot wait to start running again, I am looking forward to pushing myself.Cornflakegirlhttp://www.blogger.com/profile/08849351594745476417noreply@blogger.com0tag:blogger.com,1999:blog-3693154034591564928.post-7090184349871282962015-07-22T17:52:00.000-07:002015-07-22T17:52:09.049-07:00Seizures SuckSeizures Suck. Jordan has been very lucky when it comes to her seizures. In the beginning medication controlled them and the only time she relapsed was when she was off medication. She has been on medication for 3 years now and they have worked great, that is until January of this year.<br />
<br /><br />
I actually think they start back in August of 2014, but no one else was seeing anything and since they caught me off guard I was never fast enough with the video taping them.<br />
<br /><br />
Now almost a year later they have become somewhat of the norm. She only has them once or twice every month, so I cannot complain. Actually I can complain I know there are people who have more seizures and there are people who have less. My problems are not bigger or less significant than someone else's, they are mine.<br />
<br /><br />
I realized over the past few months that I need to control my fears because it will only make things worse. She now understands when she is having a seizure and she can explain things to me. She talks through them albeit confused speaking, at least she is speaking. These seizures are not as scary as when she first started having seizures and I believe as time goes on we will learn to understand them more.<br />
<br /><br />
Training sucks.<br />
<br /><br />
I have learned that breathing is good when you run, so when you cannot breath you have a problem. I have a problem. I practice mindfulness, I understand the concept of breathing using your diaphragm. I practice this every morning feeling my stomach rise and fall as I breath.<br />
<br /><br />
Then I start running and my mind turns to mush. My body rebels and says it cannot breath. I tell myself to practice what I know and it laughs at me, mocking me.<br />
<br /><br />
How am I ever going to run 13.1 miles if I can barley run 1 mile.<br />
<br /><br />
Now I am throwing everything I know about breathing out the window and I am going to try mouth breathing. Lets pray is works or I am in real trouble.<br />
<br /><br />
Go Team Tinkerbell, OT<br />
<br /><br />
<a href="http://princesshalfmarathon.childrensmiraclenetworkhospitals.org/index.cfm?fuseaction=donordrive.participant&participantID=2169">http://princesshalfmarathon.childrensmiraclenetworkhospitals.org/index.cfm?fuseaction=donordrive.participant&participantID=2169</a><br />
Cornflakegirlhttp://www.blogger.com/profile/08849351594745476417noreply@blogger.com0tag:blogger.com,1999:blog-3693154034591564928.post-43374482302117628792015-07-18T12:40:00.000-07:002015-07-18T12:40:16.372-07:00I think I am insaneDay 3:<br />
<br />
I think I am insane, what was I thinking signing up for a half marathon, I can barely walk 2 miles never mind run 13.1. That was my first thought the day after I signed up for the marathon. Then my wonderful team mates sent me an edible arrangements and I remembered I am not alone in this journey. I have people who will encourage me and won't let me quit. It doesn't matter how fast I run or even if I walk part of it, all that matters is that I finish.<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjx_Zfvib0RUtwhVT2lcGTRtJz2F26mlQHv-x1SHJh0TDeOw2n448tjRhjak4t0yb9k8Qe7hAe_pqxkqs68x82IRhTPN5bLDaiRSXdCELKpCN3VepyCfEdPKsBwR7ac0r8abwyT_kbPlg/s1600/20150716_120145.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjx_Zfvib0RUtwhVT2lcGTRtJz2F26mlQHv-x1SHJh0TDeOw2n448tjRhjak4t0yb9k8Qe7hAe_pqxkqs68x82IRhTPN5bLDaiRSXdCELKpCN3VepyCfEdPKsBwR7ac0r8abwyT_kbPlg/s320/20150716_120145.jpg" width="180" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBBHGI6o6p2oTv0TToP6onp5wQJplWy28fP_FnZOrbR5Ybo7t8Ot7ATXrRAP5TtU-3LFhCfFG5ilKjDL5okWMgVI1S_DyiSZYUGhS8fVZfXl8gy0jbl5ic_yEuqHnj3TYiPtRYkb6XhQ/s1600/20150716_142912.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBBHGI6o6p2oTv0TToP6onp5wQJplWy28fP_FnZOrbR5Ybo7t8Ot7ATXrRAP5TtU-3LFhCfFG5ilKjDL5okWMgVI1S_DyiSZYUGhS8fVZfXl8gy0jbl5ic_yEuqHnj3TYiPtRYkb6XhQ/s320/20150716_142912.jpg" width="180" /></a></div>
<br />
<br />
Yesterday I did not work out when I woke up. I knew that Jordan and I were going to a concert and I needed the sleep because we would be out late. I was extremely nervous about taking her to this concert. Not because it was her first concert or anything, this is her 8th concert, I think. I was nervous because two days before she ended up in a medically induced coma we were at a Shinedown concert. This is the first concert she has attended since that one.<span id="goog_1884191415"></span><br />
<br />
As I stood there watching her interact with her friends, looking beautiful and mature, I realized we have come so far. My fears will never go away, but I am learning to control them and I am so glad that my fear does not hold her back from doing the things she loves to do.<br />
<br />
Training for this race is nothing compared to raising a teenage daughter with multiple medical conditions, that just wants to be a normal teenager.<br />
<br />
We will both make it through these challenges; having great friends, wonderful team mates and a strong family will make it that much easier.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSMqI-cSWXNueVTzMWuFdmxBkYS0EtBhrlJGpqP5WH9vElN_-VPnjDgpxu33InNg7EiDqMpn2i7TfJV2QGCWGRprqpWrT2p4SmEwSCgrQ6Zbkc2Q0bfXtoYBzdkOnsADs-KVSxx28IhQ/s1600/20150717_182541.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSMqI-cSWXNueVTzMWuFdmxBkYS0EtBhrlJGpqP5WH9vElN_-VPnjDgpxu33InNg7EiDqMpn2i7TfJV2QGCWGRprqpWrT2p4SmEwSCgrQ6Zbkc2Q0bfXtoYBzdkOnsADs-KVSxx28IhQ/s320/20150717_182541.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTy3KjosJ1yXL4tTmKwyxcV7lInscxDBJ46I8rWr3BmaDZLc-lubb7il-e5VirKw5_i7Ia9eUOeb1jgzuWGlsU4w9KBDENEYZqSKe8ks_4BO2ocL2ph5OEOTpOis7uJR5turOCRoGmcw/s1600/20150717_195950.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTy3KjosJ1yXL4tTmKwyxcV7lInscxDBJ46I8rWr3BmaDZLc-lubb7il-e5VirKw5_i7Ia9eUOeb1jgzuWGlsU4w9KBDENEYZqSKe8ks_4BO2ocL2ph5OEOTpOis7uJR5turOCRoGmcw/s320/20150717_195950.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAnGVPhq5ESAIGfmwaTJVyB1vYFpplCXz8MOYAuR9z053HA4DhS94lIYZCs-DFcY0M7mXEBqvHXwvKzoNq3pEbzeTLWidvlGsedWUAaCkkXTTsZBfGjwG4xLqUbXhyphenhyphensZKA0YX2fYc9NA/s1600/20150717_203659.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAnGVPhq5ESAIGfmwaTJVyB1vYFpplCXz8MOYAuR9z053HA4DhS94lIYZCs-DFcY0M7mXEBqvHXwvKzoNq3pEbzeTLWidvlGsedWUAaCkkXTTsZBfGjwG4xLqUbXhyphenhyphensZKA0YX2fYc9NA/s320/20150717_203659.jpg" width="320" /></a></div>
<br />Cornflakegirlhttp://www.blogger.com/profile/08849351594745476417noreply@blogger.com0tag:blogger.com,1999:blog-3693154034591564928.post-27605417749792175942015-07-16T06:44:00.001-07:002015-07-16T06:49:15.752-07:00It's OfficialI am running the Disney Princess Half Marathon on February 21, 2016. I am super excited and nervous to be running this event. Since Jordan got sick in 2010, I have put myself on the back burner. I have not worked out as much as I should and I learned I am a stress eater. Today starts a new way a life.<br />
<br />
I am running under Team Tinkerbell, OT with my co-workers and Baystate Children's Hospital PFAC family members. I am thankful for the support they have given me and I am looking forward to training sessions and long runs that will get me ready for the race.<br />
<br />
Day 1:<br />
<br />
I figure I can run 13.1 miles for Jordan. Her journey had taken her down many hard roads and she has over come them. She is my inspiration and every time I feel like quitting I think of her. Lying in a hospital bed with millions of tubes and not knowing if she would wake up, getting blood drawn for the 100th time and knowing how much she hates it. She tackled most things with a smile on her face and that smile is what I see when I run.<br />
<br />
Today, she is a 13 year old bundle of life. She loves school, her friends, bowling, and public speaking.<br />
<br />
<br />
Thanks for the support!<br />
<br />
WendyCornflakegirlhttp://www.blogger.com/profile/08849351594745476417noreply@blogger.com0tag:blogger.com,1999:blog-3693154034591564928.post-86568572864778400842015-03-20T08:51:00.002-07:002015-03-20T08:51:18.990-07:00Epilepsy, you will not take my daughter<b style="font-weight: normal;"><div dir="ltr" id="docs-internal-guid-cb085a9b-37df-ce46-8f7b-b7ed6eb5494d" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">Epilepsy there I said it. For so long I feared you and all that you mean. You came into my world with a bang turning my funny, adventurous, outgoing 8 year old into a helpless child who had to be put into a coma. You rocked our world in 2010 and at the time I would only say Jordan had a seizure disorder.</span></div>
<div style="text-align: center;">
<br id="docs-internal-guid-cb085a9b-37e0-05fc-52c9-9fe0e34a5afc" /><img height="257" src="https://lh6.googleusercontent.com/92g12bRe-cKVqIuSY9w3oI6hWC8ECemSS3hOBpa0Ch8_1LABsSznKgWGeJsnx2yFYBaK71oadR6Vm_Ulb4ldqetdfLjELvZPTYOBtL8pnypjXXIMYVSRgO5Qsg3xR1QX8jOBXg" style="-webkit-transform: rotate(0.00rad); border: currentColor; transform: rotate(0rad);" width="353" /></div>
<div style="text-align: center;">
</div>
<div style="text-align: left;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">Epilepsy thought you could steal her from us but you couldn’t. Slowly she learned to walk, talk, eat and laugh again. Her brain was winning the battle you set against her and she was thriving. For 2 years she fought you fearlessly never letting you stop her. Then the seizures struck again and my world was rocked all over.</span></div>
<br /><br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">I started to realize it was my fear you were taking. Epilepsy means she will never be able to do anything. Epilepsy means she will be deficient in some way. You will take her hopes and dreams and leave us with a withering child that we don’t know what to do with. See how you play mind games with me, see how you get into my brain as well. It was my fear of Epilepsy that caused all this anguish in me. My fear that made me crazy every day she went to school or was alone in her room.</span></div>
<br /><br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">Now I have learned to not fear you. Jordan has shown me that no matter what Epilepsy throws at her, we will handle it. She is so much stronger because of you. She doesn’t let you hold her back and she never will. Jordan wants to be a neurologist because of Epilepsy and what you did to her. She wants to learn all about Epilepsy so she can help other children like her. She wants to show them that no matter what you can still get up and keep going. At 13 Jordan is a wonderful advocate speaking at hospitals, colleges and her school about Epilepsy. </span><img height="320" src="https://lh6.googleusercontent.com/Jv1KScpIRKM1xZ0ctJ9WvBcG93XBfE8OvdPxkE_4tX5tbYSFkIBfR4aIU0S0HbIwlPYMU5BDuJOc8eWHU7ZFHKmUwXIqijOAl6Tr4bOJ7Y-4f41OrvvhdSI-yqBCfK0o6xtZ7Q" style="-webkit-transform: rotate(0.00rad); border: currentColor; transform: rotate(0rad);" width="240" /></div>
<br /><br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"><strong>Epilepsy I may still fear you at times but you will never take my daughter from me. I will not let you have her and she will not go quietly if you try to take her. </strong></span></div>
<br /></b><br />Cornflakegirlhttp://www.blogger.com/profile/08849351594745476417noreply@blogger.com0tag:blogger.com,1999:blog-3693154034591564928.post-11861923964108955212014-05-21T07:56:00.000-07:002014-05-21T07:56:01.026-07:00Being An AdvocateJordan has been dealing with <b style="background-color: white; font-family: sans-serif; font-size: 13px; line-height: 19.18px;"><a href="http://pdsa.org/about-itp/in-children.html" target="_blank">Idiopathic thrombocytopenic purpura (ITP</a>)</b> for over a year now. As we go through the process of understanding ITP and what it really means I have learned a lot. One of the most important things I learned was that Jordan is the best advocate for herself, now that she is getting older and that I need to be a bigger voice for her if her voice is not being heard.<br />
<br />
In March of 2013 she started taking Nplate for her ITP. In the beginning it was working great. Her platelets, which are usually in the below 50K (normal is between 150K and 400K), started climbing into the 100K. Everyone was happy and we just kept increasing her dose very few weeks. When she reached the dose of 225mcg, Jordan started getting sick. Yes it was great that her platelets were in the 200K although it was not great that she was throwing up and having lots of problems. Now here is the frustrating part in this situation. When I talked with the doctor's about this they said "that is not a normal side effect of this medication, maybe something else is going"<br />
<br />
These episodes of throwing up and being out of commission lasted for about 4 weeks. She would get her Nplate, the next day she would throw up, she would be okay for a few days and then end up on the couch for a whole day. It broke my heart seeing her sick and since we didn't know what was wrong we decided she needed to she a Gastro doctor, Jordan has 3 autoimmune disorders and we were wondering if something new popped up. I knew in my gut it was the medication and I hated having to bring her to another doctor.<br />
<br />
Well the Gastro doctor thought it would be best to do an endoscopy and a colonoscopy, which we did do just to make sure she doesn't have Crohn's or Celiac Disease. She was a trouper about the testing and did great. In the end she had a little inflammation although not enough for them to think it was anything important.<br />
<br />
Now we have had all this testing done and proof that it is not something else so we asked to lower the dose of Nplate. As soon as it was lowered she started feeling better.<br />
<br />
***Update***<br />
<br />
Fast forward to May 2014. Jordan is off of all ITP meds and doing great. I will update on this at a later date.Cornflakegirlhttp://www.blogger.com/profile/08849351594745476417noreply@blogger.com0tag:blogger.com,1999:blog-3693154034591564928.post-37735249274141714132013-11-07T13:39:00.000-08:002013-11-07T13:39:40.888-08:00Charitable GivingsJordan has decided that she would like to raise money for Baystate Children's Hospital again this year. We have a couple things in the works and the first is a calendar of images she took over the year. She is so proud of this work and is hoping you will take a look at it. Baystate Children's Hospital holds a special place in our hearts because in 2010 Jordan had a grand mal seizure and was in a medically induced coma for 11 days. Since then she has spent many days at the hospital and we truly believe she would not be the person she is today if they were not there to save her life. To the doctor's, nurse's, child life, and staff we will never be able to say thank you enough.<br />
<br />
<a href="http://www.zazzle.com/through_jordans_eyes-158680700472601999?rf=238279804181451926">http://www.zazzle.com/through_jordans_eyes-158680700472601999?rf=238279804181451926</a><br />
<br />
<br />
<br />
Thank you for the support.Cornflakegirlhttp://www.blogger.com/profile/08849351594745476417noreply@blogger.com0tag:blogger.com,1999:blog-3693154034591564928.post-44763321034859243332013-10-08T08:18:00.001-07:002013-10-16T09:22:55.059-07:00A word I never sayEpilepsy is a word I once could never say. When Jordan had her first seizure, I said she has a seizure disorder. As time went on I always explained her condition as an unexplained seizure disorder. When she relapsed this year and her doctor said she had epilepsy I told him he was wrong. I was afraid of what that word meant and the stigma behind it. I did not want Jordan labeled with that scary word. I put my own fears and anxiety onto her because of this one word.<br />
<br />
Then this weekend we went to an art opening called The Hidden Truth: the Mind Unraveled. Devon submitted an art piece to this exhibit and his piece got accepted.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEir4UJxRCziHGH9ebIdF0OymoW8sAhBl-dEx_8SOZD1cvvV8_Pf7ClKP_yrxu0MKp9eYUGCA_UDfQDPRjsEnwUBf3qMxgfl_KsS_6pgG1xObus8aitqYNrbHY4nTkFbIzuYOt3RaXmUUw/s1600/032.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="255" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEir4UJxRCziHGH9ebIdF0OymoW8sAhBl-dEx_8SOZD1cvvV8_Pf7ClKP_yrxu0MKp9eYUGCA_UDfQDPRjsEnwUBf3qMxgfl_KsS_6pgG1xObus8aitqYNrbHY4nTkFbIzuYOt3RaXmUUw/s320/032.JPG" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
<span style="font-family: Times, Times New Roman, serif;">Those are Devon's hands, he does intricate pen and ink drawings. This piece sold before the exhibit even opened and we are so proud of him.</span><br />
<span style="font-family: Times, Times New Roman, serif;"><br /></span>
<span style="background-color: white; line-height: 18px;"><span style="font-family: Times, Times New Roman, serif;">Now I have a whole new outlook on things and it was nice to meet other people who have epilepsy. Now I can say Jordan has secondary epilepsy, which means she has seizures and they don’t know why. I was amazed by all the people we met who have had epilepsy their whole lives or who had their first seizure a year ago. There were people from around the world. We talked with a gentleman from the UK who has had seizures his whole life, he told us a story of almost having a plane emergency land because he was having a seizure. He was an amazing person who has traveled the world and does not let epilepsy control his life. There was a mother of two boys who is still trying to find the right medications to control her seizures and the artist from Massachusetts who had her first seizure at the age of 38.</span></span><br />
<span style="background-color: white; line-height: 18px;"><span style="font-family: Times, Times New Roman, serif;"><br /></span></span>
<span style="background-color: white; line-height: 18px;"><span style="font-family: Times, Times New Roman, serif;">Jordan had a great experience being at this event. She came alive talking with other people who have epilepsy, they understood her. One said "I never remember having a seizure" and another said "the medications suck". She related to these people and I feel so much better about her condition. I have always said she can do anything and now I truly believe it.</span></span><br />
<span style="background-color: white; line-height: 18px;"><span style="font-family: Times, Times New Roman, serif;"><br /></span></span>
<span style="background-color: white; line-height: 18px;"><span style="font-family: Times, Times New Roman, serif;">Jordan getting sick has always been a double edge sword. It sucks, I hate it and sometimes I wish it never happened. Then I think about Saturday night and realize we would never of had that experience if she didn't sick. We would never meet all the amazing, wonderful people we have met along the way. It has changed my family in way that is for the best and I love the life I live.</span></span><br />
<span style="background-color: white; line-height: 18px;"><span style="font-family: Times, Times New Roman, serif;"><br /></span></span>
<span style="background-color: white; line-height: 18px;"><span style="font-family: Times, Times New Roman, serif;"><br /></span></span>
<span style="background-color: #e3e3e3; color: #3e3733; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 18px;"><br /></span>
<span style="background-color: #e3e3e3; color: #3e3733; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 18px;"><br /></span>
Cornflakegirlhttp://www.blogger.com/profile/08849351594745476417noreply@blogger.com0tag:blogger.com,1999:blog-3693154034591564928.post-91497658143736276682013-08-08T15:18:00.001-07:002013-08-08T15:18:30.797-07:00Being Blind<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">being blind</span></div>
<b id="docs-internal-guid-1dd3b1f4-5ffd-1bed-5481-9b9c9dfb899a" style="font-weight: normal;"><br /><span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"></span></b>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Sometimes I think I am blind to the situation with Jordan. I look at her and think there is nothing wrong with her. She is the same child she has always been and we live our life like we always have. While this is great and it keeps that normalcy in our lives and our household sometimes I worry it is not the best thing to do. It is also hard to be blind when she is covered in bruises and petechiae. They are a glaring reminder that she really is sick</span></div>
<b style="font-weight: normal;"><br /><span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"></span></b>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Last week her platelets were 31K and we decided to not treat her with anything. The Nplate has stopped working and it was making her very sick, she was either throwing up or having diarrhea everyday. That is not a way to live and it totally sucked. We were all okay with not treating and seeing what information the doctors could find out about Nplate. As the week has gone on her platelets have dropped even more. She is getting frustrated and a little worried about all the bruising and yesterday said “I would not mind taking steroids because I don’t want to have to explain to everyone why I have all these red dots and bruises. I don’t want to go to school and explain why I can’t play all the games other kids can” My heart breaks for her.</span></div>
<b style="font-weight: normal;"><br /><span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"></span><br /><span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"></span></b><br />
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Platelet Update:</span></div>
<b style="font-weight: normal;"><br /><span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"></span></b>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Jordan’s platelets are 6K. We started steroids today and we went through about 5 different options that we can do. Some the doctor really likes, some he is neutral about and others he doesn’t like at all. We have a lot to talk about over the next few days. One option is an oral medication similar to Nplate. Jordan is nervous about this one because of what happened with the Nplate. The other is CellCept. Since she was on that when her platelets started to drop I am not thrilled with that one. Although she is nervous at this point we are going with the oral option that is similar to Nplate. Praying that it will work and she can get back to doing the things she loves.</span></div>
<b style="font-weight: normal;"><br /><span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"></span><br /><span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"></span></b><br />
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Today we received her nueropsych eval and I was a little taken back by some of the results. I had to read it 3 times before it sunk in. She tested much better this time than the first time although there are definitely weakness that we need to work on. One of the diagnosis is a catch all which basically means, we don’t know. What else is new. The other is a Nonverbal Learning Disability, which is why she has problems with spelling. Funny because I am a horrible speller so I might have the same problem. In the end it was a mostly positive report and the things we need to work on we will. </span></div>
<b style="font-weight: normal;"><br /><span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"></span></b>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Hopefully over the next three weeks we will get her platelets straightened out, we will work with the school to get her ready for that and we will enjoy the rest of the summer. I am looking forward to spending time with family, relaxing and just having fun. </span></div>
<b style="font-weight: normal;"><br /><span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"></span></b>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">We hope you are all enjoying your summer! Thanks for the continued prayers and support!</span></div>
<br /><span style="font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;"></span>Cornflakegirlhttp://www.blogger.com/profile/08849351594745476417noreply@blogger.com0tag:blogger.com,1999:blog-3693154034591564928.post-9100410985850718392013-06-24T16:44:00.001-07:002013-06-24T16:44:18.010-07:005th Grade Graduation<div class="MsoNormal">
Tomorrow is Jordan's 5th grade graduation. Three years ago this day was just a shadow in
my mind. I never thought she would make
it to this day and doing so well.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
She has grown so much over the past 3 years, she is as tall
as me and she is living life to the fullest.
We are so blessed to have so many wonderful friends and family members
that have stood by us through these years.
We would not be here without all of you.
It may sound weird; I think I will be crying tomorrow. I never cried when the boys graduated 5th
grade although their roads were a little easier than hers. I am so proud of the amazing young woman
Jordan has become and I cannot wait to see what the next 3 years will bring.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I know middle school is usually the hardest years of your
life. I am hoping for Jordan they are
easier than the last 3 and that the struggles she faces are typical pre-teen
problems. I am not sure if she will go
to the boy’s school or not, at this point it doesn't matter.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
She made it and tomorrow she will no longer be an elementary
school student, she will be in middle school.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
Thank you for sharing in our journey! We love you all and
will keep you posted as to how things are going. Enjoy your summer.<o:p></o:p></div>
Cornflakegirlhttp://www.blogger.com/profile/08849351594745476417noreply@blogger.com0tag:blogger.com,1999:blog-3693154034591564928.post-78490622359498036112013-05-27T06:28:00.002-07:002013-05-27T06:28:51.924-07:00Memorial Day!To all the men and women, fathers, brothers, mothers and sisters, grandparents and friends who have served in the military, who have given the ultimate sacrifice so we may be safe and our values be upheld, we thank you today and everyday.<br />
<br />
We hope you get to spend the day with loved ones and remember those who may no longer be here. We are getting together with family today and I cannot wait to spend time with them.<br />
<br />
Things have been very busy here for the past few weeks. Frisbee has ended for the boys. Last weekend we were in Vermont for a tournament were they team came in 3rd over all. This was a great accomplishment for a team so young. Saturday was states and although we didn't make it to the finals I am still very proud of the whole PVPA Frisbee team and the wonderful season they had this year.<br />
<br />
Jordan is doing well. Her platelets are still over 150K and we are taking one week at a time. As long as her platelets stay up she will continue to get the Nplate. I am sure at some point we will take about when she can try to come off that medication although for now we are just happy her platelets are at normal levels.<br />
<br />
Soccer will be ending soon and summer will upon us before we know it. I am looking forward to having a wonderful summer with many new adventures.<br />
<br />
Have a fabulous day!Cornflakegirlhttp://www.blogger.com/profile/08849351594745476417noreply@blogger.com0tag:blogger.com,1999:blog-3693154034591564928.post-1627765617390794852013-05-14T04:36:00.002-07:002013-05-14T04:36:26.087-07:00The Sun Chroniclelast week Jordan and I went to Attleboro to meet with the other members of the Rare Disease United Foundation and the Sun Chronicle was there to interview us.<br />
<br />
Check out the article at <a href="http://www.thesunchronicle.com/news/local_news/a-mother-s-love-helps-others/article_b70cd8d4-e21d-50b2-8d9f-73b77da8e2f5.html" target="_blank">The Sun Chronicle</a>.<br />
<br />
It is a great artcile and is helping us spread awareness about who we are. Cornflakegirlhttp://www.blogger.com/profile/08849351594745476417noreply@blogger.com0tag:blogger.com,1999:blog-3693154034591564928.post-32657383472692439642013-04-26T03:43:00.001-07:002013-04-26T03:43:16.395-07:00Regional Director of MassachusettsIt is official I am the Regional Dicrtor of the Massachusetts Rare Disease Community chapter of the Rare Disease United Foundation. We are a <strong>non-disease specific</strong> not-for-profit organization. Our mission is to build a strong rare disease community in Massachusetts, to provide support and information to our families, to raise awareness and to advocate for our families.<br />
<br />
If you are interested in more information leave me a comment and I will get back to you. At this time I do not have an email for the foundation set up because our website is under construction.<br />
<br />
My favorite thing about being a part of this group is that we are non-disease specific. There are so many organizations for specific disease while there are 100 of more diseases out there. We all have the similar struggles, hopes and dreams and just because our disease are different doesn't mean we can't help each other.<br /><br />
<div>
<div class="mbl">
<div class="mhl">
<div class="mvm uiP fsm">
<span class="text_exposed_show">We look forward to working on behalf the the rare disease community in Massachusetts. Thank you!!</span> </div>
</div>
</div>
</div>
Cornflakegirlhttp://www.blogger.com/profile/08849351594745476417noreply@blogger.com0tag:blogger.com,1999:blog-3693154034591564928.post-29233856383604719182013-04-22T18:47:00.000-07:002013-04-22T18:47:55.348-07:00DNA Day<div style="text-align: center;">
<img height="320" src="https://sphotos-a.xx.fbcdn.net/hphotos-prn1/3545_495054217217080_1187197992_n.jpg" width="246" /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: left;">
I am so excited to be a part of this wonderful organization. I cannot wait to get started. We are mothers, fathers, grandparents, guardians, doctors and patients looking to make a difference in the rare disease community. We are a non disease specific not-for-profit organization that started in Rhode Island, is moving into Massachusetts and will soon be all over New England.</div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
Check us out on <a href="https://www.facebook.com/massraredisease">facebook</a> or at the <a href="http://rirdf.org/">Rhode Island Rare Disease Foundation</a> website, which is under construction at the moment.</div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
If you are interested in support groups, fundraising or if you have any questions please contact me at mrdfwf@gmail.com</div>
Cornflakegirlhttp://www.blogger.com/profile/08849351594745476417noreply@blogger.com0tag:blogger.com,1999:blog-3693154034591564928.post-30892354159353606542013-04-15T10:40:00.001-07:002013-04-15T10:40:17.981-07:00I love someone who is RARE. Do you?Did you know that there are over 7,000 Rare Diseases and new ones are discovered all the time. <br />
<br />
RARE is Everywhere and I want to spread the word about supporting RARE because even though alone we are RARE together we are STRONG and sometimes I just need the stregnth of others. You may not even realize that you know someone who is RARE, but I bet you do.<br />
<br />
Rare and genetic diseases affect 1 in 10 Americans, 30 million people in the United States, and 300 million people globally. Over 7,000 distinct rare diseases exist and approximately 80 percent are caused by faulty genes. The <a href="http://www.nih.gov/">National Institutes of Health</a> estimates that 50% of people affected by rare diseases are children, making rare diseases on of the mst deadly and debilitating for children worldwide.<br />
<br />
<br />
While at Lobby Day we were shown <a href="http://globalgenes.org/">the Global Genes Project</a> video that is below. It does a wonderful job of showing how important staying connected is and how you really aren't ALONE.<br />
<br />
<a href="http://www.youtube.com/embed/BmBXJyhTyJ0">http://www.youtube.com/embed/BmBXJyhTyJ0</a><br />
<br />
When it is your child that you watch suvering day after day you want to stand up and shout at the world, hey listen to me. Well today I am shouting..if you are listening and want to help spread the word contact me. Maybe you can help figure out what is wrong with my child and if not mine maybe someone elses.<br />
<br />
<br />
<br />
<br />
<br />Cornflakegirlhttp://www.blogger.com/profile/08849351594745476417noreply@blogger.com0tag:blogger.com,1999:blog-3693154034591564928.post-74538508221232861002013-04-13T11:10:00.000-07:002013-04-13T11:10:16.680-07:00Soccer, Soccer, SoccerSoccer games for the spring season started today and I love soccer season. We see friends we haven't seen in months and I love watching the kids play. They have played on travel soccer teams since they were little and it is so nice to see them still playing with the same kids years later.<br />
<br />
Devon's team was in Division 1 last season and they did not have a great season. They didn't win a game all season and started fighting a lot. Since Devon played goalie for most of the season he was very frustrated and almost did come back. We encouraged him to play with his team because it is their last season together and they got moved back to Division 2. Well they played great today, worked together and ended up with a 5-1 win. It was awesome to see them working together as a team again and having a great time doing it.<br />
<br />
Jordan's team played Division 1 last season and while they didn't win a lot of games they held their own and are back in Division 1. Jordan's team has played together since they were 5 years old and I am always in awe of how well they play together. Unlike the boys they never give up and usually dominate the field. Even if they don't win, which today they did not, they still give it their all.<br />
<br />
Today was hard because it was the first game of the season and Jordan was very nervous. Then the game became very intense and she ended up not playing at all. It is hard to watch all her friends playing and she ends up crying on the way home. Her coach is great and usually plays her even if it is a few minutes. I think sometimes she gets caught up in the game and knows that Jordan doesn't always want to play. It is that fine balancing act between trying to win and playing everyone. When Jordan first got sick she didn't mind only playing 5 minutes a game, now it is starting to bother her a little. The good thing is her coach usually makes up for it in another game.<br />
<br />
It's just another part of life that we have to watch our children go through. They aren't always going to be the best at everything and sometimes you just don't get to play the game. Doesn't mean you sit down and become defeated by it, it means you get back up and try twice as hard.<br />
<br />
<br />
<br />
<br />Cornflakegirlhttp://www.blogger.com/profile/08849351594745476417noreply@blogger.com0tag:blogger.com,1999:blog-3693154034591564928.post-76338327587998326872013-04-12T09:30:00.001-07:002013-04-12T09:30:13.542-07:00First DanceJordan has her first dance tonight. I am looking forward to listening to her and her friends get ready before the dance. I cannot believe that she is growing up so fast and I am so happy that she is able to experience these wonderful times being a kid.<br />
<br />
She had to grow up so fast because of all the illness she has experienced and we expect so much from her that I love being able to sit back and just watch her. She has developed into such a beautiful young lady and I am looking forward to many more years of dances.Cornflakegirlhttp://www.blogger.com/profile/08849351594745476417noreply@blogger.com0tag:blogger.com,1999:blog-3693154034591564928.post-75917410538077526122013-04-11T13:15:00.002-07:002013-04-11T13:15:38.103-07:00New York Skyline<div dir="ltr" id="internal-source-marker_0.6516332649117413" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">We spent this past weekend with my whole family. It was such a fun time being with everyone and watching my brother and his fiance get married. They looked so happy and it was such a special night. I enjoyed seeing family and friends that I haven’t seen in a while and catching up with everyone.</span></div>
<br /><span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">I was a little nervous because I knew it would be a long weekend with lots of action and late nights. I didn’t want Jordan to over do it and I was glad when on Friday night she decided to go to bed instead of going down to dinner. I meant I didn’t get to have dinner with everyone, but that was okay with me. Having her fall asleep at 8:15 made me relax a little. She did push the limits like she always does. While staying in hotels was necessary, I didn’t like the whole pool situation. Knowing her younger cousins would want to swim I let her bring her bathing suit. Of course I think I had a 100 little heart skips as I watched her swim underwater. In the end she had a great time and I managed to keep calm for most of the swimming.</span></div>
<br /><span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">The day of the wedding was a very long day. It started at 6:00 am and went until 1:30 the next morning. I know my family will have many great memories of Rob and Natalia, the many many pictures we had taken, the New York skyline, the dancing and all the food. Good think he is the last one to get married because I think he outdid the rest of us, it was beautiful.</span></div>
<br /><span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">Now that we are back things are moving along as always. Jordan went today for blood work and her platelets are 123K. She says she is just Whatever about the number although I wanted to jump up and down and scream for joy. Here’s hoping my enthusiasm isn’t too much. She is still on Nplate and she has no restrictions from the Hemoc doctors. Neurology is a different story, and one we are working with.</span></div>
<br /><span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">Soccer season starts this weekend and I am looking forward to seeing our friends and have a great time together. We wish you all luck and happiness with whatever you are doing to enjoy the nice weather we are having.</span>Cornflakegirlhttp://www.blogger.com/profile/08849351594745476417noreply@blogger.com0tag:blogger.com,1999:blog-3693154034591564928.post-31692715315011120972013-04-03T04:06:00.000-07:002013-04-03T04:06:21.033-07:00His artistic eye goes beyond drawing<span style="font-family: Arial, Helvetica, sans-serif;">Devon has an artisic eye that he did not get from me. My brain works in lines and shapes, I can barley draw a stick figure. My mother on the other hand is an excellent artist. She tells me all the time, "It's easy. You just look at something and draw it." Yeah easy for her because she can draw, not for me I can't. Devon has gotten this talent and over the years I have loved watching him create these beautiul pieces. While I can't draw I love photography and have always tried to take artistic pictures.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">I finally got a decent camera and played around with it. I came up with the following photos.</span><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnDCmHsK6fXytTAog0L6gVwMlxqcMlPTver2-JNMr_byBk9vnWB77ZxKvAZ6RArHfLi_BLU4pWGANOuiK9tEkBSAe9u33n9wDoTGREKwkA7sT5m0Plinz9VS4zdeYJulvz1iR5mWpOIw/s1600/034.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnDCmHsK6fXytTAog0L6gVwMlxqcMlPTver2-JNMr_byBk9vnWB77ZxKvAZ6RArHfLi_BLU4pWGANOuiK9tEkBSAe9u33n9wDoTGREKwkA7sT5m0Plinz9VS4zdeYJulvz1iR5mWpOIw/s320/034.JPG" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjob78U8GgvS8WD5rNY4JwUMh-AFVyLxjUTsuNoUw-cw2y1TvDHfP7tE7DKcKG3pzZgLYtvyFZVgViQzhs5NHV0uWXdFi_yE8enpjc5UrcVD03AIX3393ee9EEsL4nzj1xtkd1GTjH4WQ/s1600/091a.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjob78U8GgvS8WD5rNY4JwUMh-AFVyLxjUTsuNoUw-cw2y1TvDHfP7tE7DKcKG3pzZgLYtvyFZVgViQzhs5NHV0uWXdFi_yE8enpjc5UrcVD03AIX3393ee9EEsL4nzj1xtkd1GTjH4WQ/s320/091a.JPG" width="320" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;"></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">Then Devon borrows my camera for a few hours and comes up with these pictures.</span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjL3U11Je9yZ428L0bNXF3Jn8ZUqcqtGvZqavPTeIpWhmvfJJE0pqQug1J829F6SLr8ZHiz0TDW9RYIN_ErCNq4G2vWk4PXmTCKsjxrVJdHXWnbJyECFSHVjUxPt8694ao1mLVUdTG8aQ/s1600/012.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjL3U11Je9yZ428L0bNXF3Jn8ZUqcqtGvZqavPTeIpWhmvfJJE0pqQug1J829F6SLr8ZHiz0TDW9RYIN_ErCNq4G2vWk4PXmTCKsjxrVJdHXWnbJyECFSHVjUxPt8694ao1mLVUdTG8aQ/s320/012.JPG" width="320" /></a></div>
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEignafVNn0e6X3lQcKtyw4h-Y1kC5sa9PvZpw0ZVmvJHKb0IrAY8zFZCCH0TuIqZrsHJKsvEx4UPelxQiK0Djw4Euw-nVjhZHvl4sA9nZf0JXLXdDGo9LmlcRAd0kos-lBRr1AES-ChTw/s1600/008.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEignafVNn0e6X3lQcKtyw4h-Y1kC5sa9PvZpw0ZVmvJHKb0IrAY8zFZCCH0TuIqZrsHJKsvEx4UPelxQiK0Djw4Euw-nVjhZHvl4sA9nZf0JXLXdDGo9LmlcRAd0kos-lBRr1AES-ChTw/s320/008.JPG" width="320" /></a></div>
<br />
<div style="clear: both; text-align: left;">
<span style="font-family: Arial, Helvetica, sans-serif;">I was like what the heck how can you have my camera for a few hours and take these pictures. I was proud of him and a little frustrated. When I got to this picture I was like maybe instead of drawing you will go into photography. He amazes me everyday. I hope no matter what he does that he never loses his love for teh arts and keep moving forward pursuing his dreams.</span></div>
<div style="clear: both; text-align: left;">
<span style="font-family: Arial, Helvetica, sans-serif;"></span> </div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNYNXsCIEAZ3UOqPnb2F0M-T-1SI7-7l4iN5Wmskv5JTLUjedqbpjvwBOmitbvkAg2PuCenOMguH0Mh6QMsm5hZ8LXGRc1wNCGoUwY79hmb3DcF8nwmmyBubXSmz8EhZhugUjx_DmayA/s1600/001.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNYNXsCIEAZ3UOqPnb2F0M-T-1SI7-7l4iN5Wmskv5JTLUjedqbpjvwBOmitbvkAg2PuCenOMguH0Mh6QMsm5hZ8LXGRc1wNCGoUwY79hmb3DcF8nwmmyBubXSmz8EhZhugUjx_DmayA/s320/001.JPG" width="320" /></a></div>
Cornflakegirlhttp://www.blogger.com/profile/08849351594745476417noreply@blogger.com0tag:blogger.com,1999:blog-3693154034591564928.post-24307398975084033452013-03-31T12:38:00.001-07:002013-03-31T12:38:39.953-07:00Happy Easter!Every year we do Polish Brunch for Easter. In my family that means, kielbasa (usually 3 different kinds), ham, hard boiled eggs, bread, and horseradish. It has been this way since I was a child and my father was a child. It has never really bothered me and my children have grown up with this tradition. This year Devon said "Mom, it is all meat, there are no veggies at all" It looks like next year the tradition will be changing a little and we will be adding veggies. Finally my vegetarian 14 year old took a stand we are changing a tradition for the better.<br />
<br />
We also colored Easter eggs a little different this year. Devon has been drawing for years and instead of coloring eggs he put DevArt onto the egg. I am always amazed at how he can come up with these designs, my mind so doesn't work that way.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFdBplo8l7Aoz59p5tqO-18Aje9FNEM1k-9em4VOqsnPCc2S_7Ygk7fvqWYO1aJ9greTN3t-P8PIUDhftpnleTC9OhXNbUMR-cLvu3cazHtcY1tvT7mgjRZgdCYKDqdw_uck7EyktliA/s1600/188.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFdBplo8l7Aoz59p5tqO-18Aje9FNEM1k-9em4VOqsnPCc2S_7Ygk7fvqWYO1aJ9greTN3t-P8PIUDhftpnleTC9OhXNbUMR-cLvu3cazHtcY1tvT7mgjRZgdCYKDqdw_uck7EyktliA/s320/188.JPG" width="320" /></a></div>
I am looking forward to the rest of the wonderful art work Devon will do over the years!<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-d_P63cM2thyphenhyphenKgMfydtQnpXqmpOmmm7Z7ZtAx_IkoiJUNy8lBhsu27rW83pgaI22BTLCc4T-DlGicSimfK0-7OZPN9jdItmlXPfh_94v9ziQh_dq51329XLW0vLXuz9MGIXCcV-Uq3g/s1600/200.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-d_P63cM2thyphenhyphenKgMfydtQnpXqmpOmmm7Z7ZtAx_IkoiJUNy8lBhsu27rW83pgaI22BTLCc4T-DlGicSimfK0-7OZPN9jdItmlXPfh_94v9ziQh_dq51329XLW0vLXuz9MGIXCcV-Uq3g/s320/200.JPG" width="320" /></a></div>
<br />
Today, while it was a wonderful day, Jordan had a hard time. Big crowds bother her and her mood becomes very irritated over time. After being with family for about 3 hours she had a melt down and needed to be a lone for about 20 minutes. While I understand this is because of her illness and possibly her medication it is still frustrating. We went through this back in 2010 and it was very hard on every one in the family. My hope is the doctor's will start talking about giving her an autoimmune medication again.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgg0FLhRfMDhiTccWgZUYCGnYrUl1sjKGaNWkqCja9XGrHbDlJulpMis190bqrtw22nHhycJfZEWoP7_P0Fn4IMzpzSPY9zjBrRrD9s74dT9BrU76cBUS0a2zE_nN669ZTdGaA7t_e-2A/s1600/023.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgg0FLhRfMDhiTccWgZUYCGnYrUl1sjKGaNWkqCja9XGrHbDlJulpMis190bqrtw22nHhycJfZEWoP7_P0Fn4IMzpzSPY9zjBrRrD9s74dT9BrU76cBUS0a2zE_nN669ZTdGaA7t_e-2A/s320/023.JPG" width="320" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4VubknwfDFOS-7lHKV9raruagYQ0oznaOKwhyPfYeVGVZvULgjbhmrUx54_BGeGTVoBvavKpN5dL6C0ZhHcSC-xuShHBH8UqBzjl4KCJnZ9Wx9_QoNsmAtvUaB_78TVd8F2CWJTDooA/s1600/063.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4VubknwfDFOS-7lHKV9raruagYQ0oznaOKwhyPfYeVGVZvULgjbhmrUx54_BGeGTVoBvavKpN5dL6C0ZhHcSC-xuShHBH8UqBzjl4KCJnZ9Wx9_QoNsmAtvUaB_78TVd8F2CWJTDooA/s320/063.JPG" width="213" /></a></div>
<br />
The kids had a great morning at home and then Jared got this new hat. He has been looking for a white fedora for about a year and finally he has one. <br />
<br />
Happy Easter! Enjoy the day!<br />
Cornflakegirlhttp://www.blogger.com/profile/08849351594745476417noreply@blogger.com0tag:blogger.com,1999:blog-3693154034591564928.post-4424752220147029772013-03-30T06:50:00.001-07:002013-03-30T06:50:35.150-07:00It's Been A WhileWell it has been a while since I have been here and much has changed. <br />
<br />
First, Jordan's ITP has turned chronic and we are trying an experimental medication so she can play soccer. It seems to be working although we are also going to try and change her diet to help as well. It is very hard to tell an 11 year old that they need to stop eating, grains, dairy, candy, sugar, ice cream and just about everything else they like. We have started taking small steps and I will write more about that journey later.<br />
<br />
Second, she is in 5th grade and doing great. She joined a bowling league because she was not able to swim, which is her favorite sport. At first bowling was a struggle and very frustrating. By the end of the season she was bowling a 146 and now kicks my butt when we go together.<br />
<br />
Third, Jordan and I went to Washington D.C. for Lobby Day. This was a wonderful experience, which requites further explanation later. I will say I was so proud of her for telling people her story and sharing everything. It was amazing to watch her grow right in front of my eyes.<br />
<br />
Lastly, the day we got back from Washington Jordan had a seizure, after being seizure free for over 2 years. Since then we have been going back and forth between our home and specialist in the Boston area. It has been a struggle to realize that she may have to deal with seizures for the rest of her life. I am hoping that the Boston doctors will be able to figure something out or at least listen to why I think it is more Autoimmune related than just Epilepsy.<br />
<br />
On top of everything with Jordan I have started working part time, Jared and Devon are on Varsity Frisbee and Jared is getting ready to take his permit test. Life keeps moving forward and I just have to enjoy the ride.Cornflakegirlhttp://www.blogger.com/profile/08849351594745476417noreply@blogger.com0tag:blogger.com,1999:blog-3693154034591564928.post-41057189234497356732012-03-09T06:59:00.000-08:002012-03-09T06:59:59.002-08:00Inspiration!I read a couple of blogs and one of my favorites is <a href="http://pacingthepanicroom.blogspot.com/">Pacing The Panic Room</a>. I love the way Ryan writes and his pictures are amazing. Today he has featured a video which truly inspired me.<br />
<br />
<a href="http://vimeo.com/23095780">http://vimeo.com/23095780</a><br />
<br />
With everything going on with Jordam sometimes I have a hard time getting out of bed in the morning. For some reason this time has been harder than the other two. When she was lying in a hospital bed dying I dealt with it much better. Maybe because I knew we would fight it and I knew she wouldn't die. I knew our strength and her courage would keep us going.<br />
<br />
When she developed the problem with her eyes I thought it was just a little set back. Nothing major, better than seizures and something we could beat.<br />
<br />
This time I was thrown. I was not prepared to find out that something new was wrong. I was finally letting the walls down and thinking everything was going to be okay. I'm not saying it won't be okay, it has just taken me longer to get over this new set back.<br />
<br />
After watching this video I know we will get through. The inspiration this man brings in amazing. I love inspiration things and wish that I could inspire people in the way this man inspired me. I want to thank him for reminding me that we are the only ones that hold ourselves back. We are the ones in control of our lives and destinies and we can take control back, instead of wallowing in the misery we have come to know.<br />
<br />
I hope you all watch and become as inspired as I have.Cornflakegirlhttp://www.blogger.com/profile/08849351594745476417noreply@blogger.com0tag:blogger.com,1999:blog-3693154034591564928.post-23948523596415162012012-02-09T07:08:00.000-08:002012-02-09T07:08:46.057-08:00Courage!This F*cking Sucks is how I felt today until I got on the computer and found this quote from John Wayne.<br />
<br />
“Courage is being scared to death, but saddling up anyway." -John Wayne<br />
<br />
I wanted to sit on the floor and cry or scream. I wanted to yell at someone for not being able to tell me what is wrong with Jordan. I wanted to throw things and run far away. I am frustrated because she is sad and depressed and I feel like I am not helping her. Then I read this quote and realized I could not hide. I needed to Saddle Up.<br />
<br />
So that is what I am doing. Her platelets are 71K, which is great. We are keeping the course of prednisone for the next 3 days and then lowering it to 40 mgs a day. We go to a new doctor next Wednesday and hopefully her platelets will be even higher then.<br />
She has some cookie ideas that she wants to try, hope even is ready to be a guinea pig for her creations. She has moments when she is really down and I am trying to do as many fun things with her as I can. We talked about going back to school and have a game plan worked out. She learned she can still go to the dentist and if she needs teeth pulled we can do something so she can have that done.<br />
All and all positive stuff, my frustrations will always be here I just need to keep them at bay.<br />
<br />
As for Devon, I think he is fine. I believe he might be allergic to almonds, which is what caused him to get sick yesterday.<br />
<br />
Have a wonderful week and we will keep you all posted. Thanks again for the love, support and strength, it means the world to me.Cornflakegirlhttp://www.blogger.com/profile/08849351594745476417noreply@blogger.com0tag:blogger.com,1999:blog-3693154034591564928.post-70424479510210759102012-01-21T08:30:00.000-08:002012-01-21T08:30:26.813-08:00ResolutionsWe are 21 days into 2012 and I think I have a new list of resolutions. They aren't so much resolutions as they are things that I am going to do this year. I am hoping to accomplish everything I want to and continue on my path to happiness. After the last year, my daughter getting sick and almost dying, the doctors not know what is wrong with her and finding out who my friends really are I am now focusing on myself and what I need to do form me. Since having children I have identified myself as a wife and a mom. Now I am going to start this year with me becoming me again and taking back my life, for me. I am still going to be a wife and a mom, I am just hoping that with doing things for me I will be better at both.<br />
<br />
So here are my list of life lessons, experiences and entertainment for 2012:<br />
<br />
1. Read 100 books and review them all.<br />
<br />
2. Listen to 1000 new songs<br />
<br />
3. Start eating healthier.<br />
<br />
4. Exercise 3 times a week.<br />
<br />
5. Take a photography class.<br />
<br />
6. Attend <a href="http://www.blissdomconference.com/">Blissdom</a>, if not this year then next.<br />
<br />
7. Finish writing my book.<br />
<br />
8. Take silk screening classes and start website for my son.<br />
<br />
9. Become and parent advocate for Special Education Students.<br />
<br />
This is just a start. I have deceived there are so many things I would like to do that I am going to put a life list together, something I learned from <a href="http://www.mightygirl.com/">Mightygirl</a>. <br />
<br />
If you made resolutions this year I hope you are keeping to them. If you are having trouble remember you are not alone. Reach out to someone for help and you will be able to accomplish anything.Cornflakegirlhttp://www.blogger.com/profile/08849351594745476417noreply@blogger.com0