Overcoming hydrocephalus

Your LAST DAY to give a tax-deductible gift to the PHF, Inc. in 2013. MI PHF Friends,     As 2013 comes to an end, this is also your LAST DAY to give a tax-deductible gift in 2013 to the Pediatric Hydrocephalus Foundation.  Help US make a difference as we "Fund a Cure for Hydrocephalus"  Any amount WILL really make a difference. http://www.active.com/donate/phfmi From all of us at the PHF, Thank You, and we wish you and your loved ones a happy and healthy New Year!

The sad truth is many babies are abandoned in many countries due to hydrocephalus.   Many can't afford to save their baby from hydrocephalus.  Every life is precious, we need a breakthrough. "Despite the stigma associated with caring for such babies and the high treatment cost, the parents are keen on keeping her, but are struggling to mobilize 2,000 Ghana cedis for surgery." http://www.ghanaweb.com/GhanaHomePage/NewsArchive/artikel.php?ID=296437

Merry Christmas & happy holidays!   You can still make a last minute donation on behalf of a loved one :-) http://www.active.com/donate/phfmi

Magnet heads up!   Hawke's CHRISTmas gift is being returned,has magnets.  Heads up programmable shunt parents and friends!

A lot of detail still need to be worked out. They have been going down there for 17 years. They won't even know how many people are needed or going until later next year. Will have better idea this summer if it's going to happen or not. Listening to the neurosurgeon administrator talk about it; breaks my heart knowing after one week all have the drs leave and come back. Imagine the dr that performed a life saving surgery on your child is gone for a year :-/. Hydrocephalus apparently occurs at a high rage down there..... Prayers for cure needed!!

What started out as a conversation about donating books to U of M Children's from PHF turned into a conversation about going on a Guatemalan trip to help children with hydrocephalus next year.  More to come! Hmmmm

"National Faces of Hydrocephalus Awareness" Campaign 2014: ** CONTEST ENDS 2 WEEKS FROM TODAY !! ** 106 Entries have been received! EMAIL your entries to mike@hydrocephaluskids.org (Entries made via Facebook will NOT be accepted.) Open to anyone with Hydrocephalus 19yrs & Under. We are looking for one male and one female 'Face of Hydrocephalus' to serve as our National Spokesperson for our 2014 National Hydrocephalus Awareness Campaign, with marketing and promotional materials all through the year ending September 2014 with National Hydrocephalus Awareness Month. We will randomly select ONE male and ONE female from all entries received. 1) YOU must LIKE this page 2) Just submit one picture of your nominee, between the ages of newborn to 19 years old, with their name, D.O.B., and location. 3) Please include in your email your permission that the PHF is authorized to use the picture for promotional purposes 4) Failure to comply with Rules #1...

Hawke has tubes and a prefers toon in one lobe which occurred during the tube surgery. Regularly scheduled appointment.

Great night!  Raised over $400.00 for research and awareness.  With no salaries to pay every dime goes toward the cause #PHF#Pistons

We raised $400.00 all for a cure! Loved meeting everyone. You all made this successful :-)

http://www.active.com/donate/phfmi

Wish I could join the protest, i'll pray for the protesters and a right of a parent and safety of the child http://politicker.com/2013/12/protest-planned-against-last-minute-bloomberg-push-for-mandatory-flu-vaccines/

Many great free books in PDF format to download.  Here is one I am going to browse and may spike your interest: http://www.nap.edu/openbook.php?record_id=18400

In the warming cabin while picking a Christmas tree

I'm not sure why this has come up, but I have been reflecting on what a blessing Canyon has been to all of us. Just as every child we have been given is a blessing; Canyon has uplifted Hawke in ways that I never fathomed. If your familiar with Hawke's story in short you know Hawke's and his brother were both diagnosed with TTTS while in the womb. They overcame much to say the least and both were born dead unecisarilly. Losing Jaxon we mourn but embrace our surviving son Hawke. 3 months in NICU to make a long story short. To have more children was no option in my mind. I closed myself off to the notion. Than I took it to prayer and The Lord changed my heart and mind. We were blessed with Canyon! He is such an bolt of lightning and cuddler. What Hawke has learned from Canyon and the companionship he enjoys with his brother is irreplaceable and has helped Hawke grow mentally and emotionally. We can't predict the future but we can seek God and make logica...

Weather changes like this really impact hydrocephalus fighters and my Facebook newsfeed reflects that.  Please keep them in prayer and pray for a cure! 

Hawke's at "work" (Physical Therapy) captivating the staff once again :-)  Thank you lord for his sweet spirit, for Your Holy Spirit.

Today is CYBER MONDAY! While you are doing your on-line Christmas shopping today make some purchases at Amazon! They will donate a portion of each sale to the PHF! Just click the link! Thank you! https://smile.amazon.com/ch/26-4582806   If you are shopping for gifts consider purchasing a lower level Piston's ticket including a free throw shot on the court after the game for $30.00  on December 15th !  Message us or contact Jason @ 810-441-9170 https://www.facebook.com/events/600750203306496/

"I love your kisses Daddy" - Hawke

Hawke had a great thanksgiving! If your new to this blog he was given hardly any expectations. He was born dead and was given breath from God after being passed for at least 13 minutes at birth. We all had a great thanksgiving praise God!

I subscribe to FDA device approval list.  Interesting development for people with seizures. "What is it?  The RNS System helps reduce the frequency of seizures in epilepsy patients who have frequent, disabling, partial-onset seizures and have not responded well to medications.  It consists of a stimulator implanted in the skull under the scalp and leads implanted in the brain." http://www.fda.gov/MedicalDevices/ProductsandMedicalProcedures/DeviceApprovalsandClearances/Recently-ApprovedDevices/ucm376685.htm?source=govdelivery&utm_medium=email&utm_source=govdelivery

Informative article http://www.themobilityresource.com/dos-and-donts-when-witnessing-a-disabled-child-having-a-meltdown/

Many of you DO see what we see! "I wish you could see the beauty, to look beyond a disability to see the person, just the person. The beauty not only from the outside, but the incredible beauty that's found in the heart." http://specialneedsparenting.net/wish-you-could-see-what-i-see/

Big sister at PT as Hawke works on his bridges :-)

Please consider voting Hawke's Physical Therapist as on rod the best! She is exceptional and her staff is exceptional as well going above and beyond! http://bit.ly/1hUtLO2

Organized a fundraiser for Hawke's incurable condition hydrocephalus.  Join us for a good time December 15th at the Palace!     $10.00 per ticket ($30.00) will be donated toward the all volunteer 501C non-profit!  Plus buy a ticket from me and you get to take a freethrow on the court!

Join us December 15th to watch the Detroit Pistons play The Portland Trailblazers!  Call me (810-441-9170) or message us if you are interested in joining us.  Exclusive through PHF we will also get to shoot on the court after the game! 30$ a ticket, 10$ Per ticket will be donated to PHF! More to come :-)

An optometrist appointment today for Hawkman. Eyes dilated and a thorough exam. Praying for no surprises and accurate results! If there was increased intracranial pressure it would be found while looking at the optic nerves.

http://www.hydrocephaluskids.org/files/hawke.html   This story was written by Hawke's 13 year old cousin Hanna. Hanna wrote this story for a State-wide school essay contest called My Michigan Personal Hero   When you hear the word hero, I bet you think of a guy with a cape on in a comic book or on TV? I did until my little cousin Hawke was born on May 14th, 2008. Hawke and his twin brother Jaxon were first pronounced dead at birth. Doctors had to make many resuscitation attempts to revive both boys. Finally after twelve long minutes, Hawke took his first breath! Sadly Jaxon did not survive. During the resuscitation attempts, a hemorrhage formed in Hawke's brain causing Hydrocephalus. Hydrocephalus is a rare condition where there is an excessive amount of fluid that builds up in the brain. Doctors, then figured out they had needed to place a shunt in his head, to help drain the excess fluid that builds up in his brain. Unfortunately for Hawke, this would not be th...

MRI look good unchanged (pheww), x ray good, waiting on blood work. Hopefully this is just a mood/behavior root cause unknown hydrocrapulous scenario. No change in ventricles makes mom and dad breath easier.

Some behavior changes demand an E.R. Trip.  Here for over 5 hours just headed up for the MRI.  Praying for good and accurate results.  Receiving the text quickly levels life. E

University of Michigan has submitted a grant request for a hydrocephalus research project.  PHF will review the application for potential approval.  Unfortunately it takes money to provide grants and support research.  We are a non-profit. Please consider donating ANY amount.  Thank you everyone! http://www.active.com/donate/phfmi

PHF Hydrocephalus Fact Check: The National Institute of Neurological Disorders and Stroke estimates that the condition occurs in roughly one in every 500 children (NINDS)

This is a tragic story.  But there's lessons to be learned.  Prayers up for this family.  I don't think we can ever be too much of an advocate for children.  Doctors are human and make mistakes. Sometimes it's due to neglect. http://www.mirror.co.uk/news/uk-news/alice-mason-inquest-top-cancer-2351560

U of M has applied for a grant with the PHF! They seek to research how a hemorrhage creates hydrocephalus. Hawke acquired hydrocephalus this way (25% Acquire hydrocephalus this way). Consider donating any amount to help us potentially meet this request! http:// www.active.com/ donate/phfmi

Hawke's AFO progression

Did you know they have been "treating" hydrocephalus the same way for over 50 years? The leading cause of children requiring brain surgery. Please consider donating any amount, no amount is too small. www.phfkids.org https://m.facebook.com/story.php?story_fbid=568538293609&id=106800436&_rdr

Random Hydrocephalus awareness fact: This condition effects siblings, friends and family members. 

Random hydrocephalus fact:  I met a 17-year-old last year.  She had over 70 brain surgeries due to hydrocephalus.  Since then I've met numerous others with similar stories.   September is hydrocephalus awareness month! www.hydrocephaluskids.org

Hydrocephalus...... A picture of Hawke's head post op in 2011. At one point he required 4 brain surgeries in 6 days.  the worlds children and adults deserve better, increased awareness and research is desperately needed. I won't post another graphic one like this.

** THIRTY DAYS OF HYDROCEPHALUS AWARENESS: DAY 9 Today's spotlight is Hydro Hero All-Star Aubrianna Marie Carr: Age: 14 months old State: Colorado 4 shunt surgeries with numerous ventricular taps to relieve pressure.

Five months ago I asked the FDA representative a question after he asked many of us to request more funding from senate and congress for the FDA. It's going to take more than this to make change! http://youtu.be/4hw_MRMehKQ Hydrocephalus fact: Did you know a new device to treat hydrocephalus can take over 8 years for FDA approval? We need change in the FDA

Pediatric Hydrocephalus Foundation, Inc. ** THIRTY DAYS OF HYDROCEPHALUS AWARENESS: DAY 7 Today's spotlight is Hydro Hero All-Star Aila Elmore, who is THIS YEAR'S National Face of Hydrocephalus Awareness: Age: 1 year old State: Indiana One shunt surgery

Fact: hydrocephalus is more common in newborns (1 in 500 births) than Down Syndrome (1 in 690 births) yet most do not know about hydrocephalus or never heard of hydrocephalus.  September is Hydrocephalus awareness month.

Hydrocephalus awareness month fact.  Hydrocephalus is the leading cause of children requiring brain surgery.  Hawke required 4 brain surgeries in 6 days due to shunt failure and complication over 2 years ago.

Today begins the 5th Anniversary of National Hydrocephalus Awareness Month. 1 in 500 babies are born in the United States each year with Hydrocephalus. Including Hawk.  I will be posting some  hydrocephalus facts this month, hang in there.

*** Breaking News *** The PHF and its Founder's Michael & Kimberly Illions, have been nominated and selected as one of the Finalists to receive a RareVoice Award in the Patient  Advocate category at this year's RareVoice Awards Gala, being held on Thursday, October 10th at the Arena Stage in Washington DC.  "This is a great honor and the timing couldn't be better as National Hydrocephalus Awareness Month begins on September 1st, and we just came back from our Hydrocephalus Awareness Day on Capitol Hill with over 125 people from 20 States", stated Michael Illions, the Vice President & Director of Advocacy for the PHF. Everyone at the PHF congratulates the other nominees from the National MPS Society, Parent Project Muscular Dystrophy, Acid Maltase Deficiency Association, Jett Foundation, University of North Carolina Chapel Hill & Jonah's Just Begun. The Second Annual Rare Voice Awards Gala is a celebration to honor advocates who gave rare disease pa...

http://pediatricdevicesatlanta.org/self-monitoring-shunt-hydrocephalus This shunt sounds exciting (with caution).  Here is a problem........ It makes me mad.... The last new shunt by codman was released to The American market in late 2012. It took Codman 8 years to receive FDA approval. 8 years!!!  Meanwhile it was being used in Europe.  The 510 K process is what the FDA calls the new small medical device approval process

Hard to believe we were all in DC this weekend meeting other parents and patients fighting and advocating for hydrocephalus. Blessed to have met so many fighters. Thankful to God for those speaking up and our PHF familia!!

We are whooped.  We made it home and accomplished our objectives, praise God!

Great last meeting of the day Congresswoman Millers office

Two hydrocephalus fighters, proud of these two (no worries the tablets is magnet free).

Senator Stabenow's office, very  personable staff

First meeting with Senator Levin's office complete

Another hydrocephalus warrior !

Excited to meet dozens of parents of hydrocephalus children and people with hydrocephalus in less than 24 hours.  Not excited that this is a life threatening condition with no cure.

3rd tour in Middle East

If I lost any motivation to stop fighting and advocating for hydrocephalus my motivation was overfilled today while looking at past surgical pictures, pictures of Hawke suffering.  ‪#‎ RighteousAnger‬ #Praying#Lobbyi ng#Brainstormin g

Yes we still believe in miracles! Hawke getting prayed on this morning in Jesus name. Prayer that he walks and prayer that Botox is not necessary.  

I asked him to at least use it from driveway to picnic table.... He did it :-)

It went well with the exception that they are leaning toward use of Botox injections. We're not apt to follow the suggestion as of yet. Researching is required and prayer. Another con of Botox is it does not last long (maybe 9 months depending on patient and does not always work, sometimes it works great) and the needle/injection is administered while the child is awake with NO sedation or pain killer. The injection is placed via the needle into the muscle(s). Not sure how many injection required for Hawke if treated. Stories of parents stopping half way into the procedure due to the pain inflicted on the patient. Yes there are some stories with good results as well.

Tomorrow Hawke has an appointment with his physiatrist. A day we have wanted to avoid, requesting a scrip for a wheelchair stroller.  Prayers for no Botox, as in not needed due to his progress.