A Young IH'er Celebrates IHope Day... with a PowerPoint Presentation!

This is Ignacio.  He has IH.  He is so passionate about raising awareness that he made a PowerPoint presentation to share with his classmates.  Want to see it?  CLICK HERE.

To celebrate IHope Day, he and his mom also made a huge mound of IH ribbons and gave them out at his school for everyone to wear.  Oh, and they wore their IHope Foundation t-shirts, too!

Way to go, Ignacio!  Great job spreading HOPE and raising awareness!

~ Pia

This Warrior Mom is Moving Mountains -- and Clinging to HOPE in the Battle

 

 Be prepared for an over-share folks. Look away if that works best for you. :-)

Life has been really tough for a while now. Between trying to walk through the process of our eldest child (for which I remain grateful and so proud of the many life lessons, he now has under his proverbial belt!), the many diagnosis of the patient (we're working to get him to agree to a group home situation - Oliver and I have to accept there's only so much we can do, especially when the patient isn't capable of getting out of his own way) and then Sutton's illness and subsequent diagnosis. Everything is a push.

A new friend shared this article. It left me in a puddle. Breakdown is good though. It's how we increase our ability to improve. While reading, I had an epiphany. Yes, I am that parent. Yes, I am that person. I was raised to PUSH. I've always pushed! When mom became ill - I fought every doctor through misdiagnosis and for her to receive the best care. I pushed and ran a business, worked an additional job (30 hours a week), was pregnant through this and had our first child with very little support (he was born five weeks after mom passed), dealt with the patient (he was a challenge, even then) and took on my dad's challenges. When she passed and we inherited all the responsibility of my dad, I fought for and with him and his many issues. When our eldest child entered the first grade, the required push increased. I fought for him, loudly and with unwavering tenacity. When diagnosed with a laundry list of challenges two years later, I fought louder and harder. I never stepped down during any of this. When dad passed away, there was a relief I'd have to fight, less. A couple of years later, when another child was diagnosed as being on the spectrum, I fought again. I didn't like being in my own skin, as every moment of life, felt like an argument. Then, I found a way to stop most of the fighting. We removed all of our children from conventional classrooms and began to educate them at home.

Gone were the arguments, confrontations and feelings of hopelessness. No one would challenge food allergies that obviously impacted some of our children. No one would ever say again (at least with any authority!), that our child was the result of our not being spankers/punishers. No one would mock our method of discussion per consequences and personal integrity. No one would challenge the need for specific structure in some areas, as well as the need for lack of structure in others. No one would limit what our children wished to learn, the rate of learning, etc. I read and researched and read some more! I sought out those with far more experience than myself. I listened and learned! I pushed, but in a positive way! The buck now stopped HERE.

But now, we're tossed back into the same situation of having to push and fight. Ya'll were with us through the nightmare of ER visits and medical neglect. We owe Sutton's life to the Ponzini-Chungs - without them, who knows to what greater damage, Sutton may have been subjected. I am now back in PUSH/FIGHT mode and it's conjuring so many emotions. Pushing is necessary. Pushing is required. Somehow, I have to call on my previous warrior spirit and remember how to be the whole of who, once upon a time, I had to be. The problem is, I didn't like her. Now, I have to find a way to be a better version of who she was. She moved mountains! Certainly there must be a way to balance it all and not feel like I'm gloved and ready to pulverize the world.

Please continue to keep all of us in your positive thoughts and prayers, as we navigate life.

~ Contributed by Rachel S.

Foundation Update June 16, 2013

We are soooooo excited!!  Our Articles of Incorporation were approved and filed, and we received the certified copies yesterday.  Took us three edits, but we did it!  We are now an official corporation!  Next step is to file the necessary papers to become a nonprofit, and we've been working on those so it shouldn't be long now!

By IH Awareness Month in September, we are hoping to be able to announce that we have become a nonprofit organization at last!  We're taking things step by step, making sure we do everything right, so that we can help as many people as possible with our foundation.  Educating the community about IH, helping IH'ers and their caregivers connect with support systems that can help them, and providing financial assistance for IH-related expenses are what we're all about.  We are grateful for a community of mentors and supporters who are helping us reach our goal.  God bless you all!  And please keep praying for us and rooting for us as we head on toward the next step in this process.  Thank you!

~ Pia

Faith, Family, and the Right Neurosurgeon Bring HOPE for This Wife and Mother of Four

My name is Shelain. I am a 38-year-old African American suffering from Intracranial Hypertension. I  was diagnosed in 2009 after the birth of my second child. My family physician read an article on "pseudotumor cerebri" (an older name for Intracranial Hypertension). I was referred to a neurologist who had some knowledge of the disease but she was not willing to help me at all. She prescribed me Diamox (acetazolamide) and referred me to an neurosurgeon.  

Before I saw Dr. Dong Kim I had seven lumbar punctures. The first lumbar puncture level was so high they admitted me to the hospital. After the last lumbar puncture I had, I had a spinal leak. The leak was fixed with a blood patch. I learned very quickly what this disease can and would do to me and my family.  I was also learning as I was going through my adventure. 

Dr. Kim is and always will be my lifesaver. He educated me on this disease. He ask me during my first visit if I had seen any difference when taking the Diamox. My answer was "no."  I was told to stop taking it right away. We discussed my options and I decided to have an LP Shunt; the vessels in my brain were too small to do a VP Shunt. 

After my surgery was the best I ever felt in a long time.  But it was short lived. I collapsed at work. My wonderful LP shunt was infected. The shunt was surrounded by a bag of pus the size of a cantaloupe. I was admitted to the hospital in my city, but the hospital would not take out the shunt. They said they did not know enough about the  LP shunt. I laid in that hospital for two days. I only had IV fluids running; no antibiotics. By then I was put on five liters of O2. They didn't understand why I was getting worse. 

My family insisted that Dr. Kim be called, but they were told that Dr. Kim said he had no knowledge of me. My family was also told that I would not make it through  the night. By the grace of God; my mother insisted that I be transferred to the hospital where Dr.Kim practiced. They told her I would not make it to the next stoplight, let alone to Houston. Houston was 1 1/2 hours away. When I was loaded in the ambulance the medic told my mother, "We will get her there no matter what." The ride was bumpy. I remember my mother lying across my body the whole ride there. When we arrived, the medic looked at my mother and said, "She's here, but barely."  

Dr. Kim was called immediately. He said he was never contacted by the hospital in my city. The infection had reached my brain. I lost three weeks of my life. I do not remember anything from that point on. I normally don't celebrate my birthday or even pay attention to it. But I thank GOD for seeing that birthday in the hospital. At that time in my life my husband had been diagnosed with a rare type of Leukemia. I had four children at home: two stepdaughters and two children of my own. Their ages were 15 years, 5 years, 2 years, and 1 year old. I left the hospital with no shunt and many headaches. I had home health visit me. I had antibodies running through my port a cath. I had to see an Infectious Disease doctor while in the hospital and when I returned home. 

Six months later, I had another LP shunt put in. Life was bearable. Then my LP shunt stopped working nine months later. I had a revision four months later. My depression had gotten worse. I was fighting my illness and trying to be a supportive wife to my husband, helping him with his chemo and his recovery. I still had to be a mother to my four children. Homework and school projects were my way of life. I had two babies I was trying to teach to walk and talk. My five-year-old was starting school. In the midst of all of this, I was dealing with this illness that had me in pain that I would never wish on anyone. My mother and other family members helped me with the kids and housework when I could not get out of bed. And I still held a full time job. I would go to work, vomiting in between patients. Some days I would black out at work. But I still maintained.

In 2012, I was diagnosed with Chiari Malformation. Dr. Kim says it's because of my shunt pulling so much fluid. He had never had that happen before.  In 2013, I had Fossa Decompression surgery. To this date I suffer from chronic pain, depression, and IH. I hope I can help educate and be a support to someone suffering as I am. My oldest daughter graduated with honors and is attending UT of San Antonio. My husband is in remission and doing better health-wise than I am. 

It is said that GOD don't put no more on you than you can bear. HE must think I am SUPERWOMAN! Because I have borne it all and seen it all. 

Guest Bloggers Wanted

Are you someone affected by Intracranial Hypertension?  Do you have it yourself?  Do you know someone who has it?  In honor of IHope Day this month, we invite you to share your stories of HOPE in the midst of trial with this rare disease.

If you would like to be a guest blogger, please submit your story along with a photo or two to us at TheIHopeFoundation@gmail.com and we will review it and reply.

Thanks so much, and we look forward to reading and sharing your HOPE testimonies!

~ Pia

Foundation Update for June 5, 2013

We had a conference call with one of our awesome mentors yesterday, and it was wonderfully productive!  We are pleased to say that we're on the right road with our foundation and we now have more direction as to how to move forward to officially become a nonprofit.  There were so many things to do all at once that it was pretty overwhelming, so we are grateful for good advice from someone who's already been on this journey.

Kathi is working today on remaking our website.  We've been having issues with the host site that we've been using (which is why that site hasn't been updated as frequently as we would have liked), so our mentor suggested another host.  So far, it looks really good!  Can't wait to unveil the new website!

I'm working on paperwork -- with a new foundation there's always bound to be paperwork.  Thankfully, I love to do this stuff so it's all good!  :)

In IHope Day news, we've written to our local government officials to request that IHope Day be officially recognized as an IH awareness day and we're awaiting their replies.  So exciting!

Kathi has been visiting her future service dog, Lily, each week.  Last week, she was measured for the mobility harness that Lily will wear!  Kathi and Lily are getting closer all the time, and they love seeing each other!  Here's a little video of last night's "hello" session:  GREETING EACH OTHER.  Enjoy!

~ Pia