Overcoming hydrocephalus

Beautiful U Salon volunteered and helped coordinate our fundraiser in July, like them please and check out the PHF album from the event! https://m.facebook.com/?refsrc=http%3A%2F%2Fwww.facebook.com%2F&_rdr#!/BeautifulUSalonSpa?v=photos&cps&album=a.353961861353967.83657.350767598340060&%24MURI__user=0

http://www.hydrocephaluskids.org/wordpress/

The moment your hydrocephalus child falls on his head and says it hurts where his shunt is. Holding your breath overnight praying for no symptoms and your child wakes normally w/no symptoms.  The moment he acts normal and great priceless, praise God!  In a moments notice life can change. #LiveLikeYourDying

PHF is donating children's books to Mott Children's Hospital Nuerosurgery department! Received them from the PHF president today :-)

Give a gift that makes a differance this year! Donate to PHF any dollar amount in a loved ones name or just to make a differance. Please consider, without donations we cant support research or advocacey. www.active.com/donate/phfmi

Meeting with great friends and remembering what we have overcome. These two are some fighters!

Don't know if its symptomatic of brain damage? Bad hydrocephalus day or what! Sometimes it dissipates and turns into a great Hawke day.....

http://www.sciencedaily.com/releases/2012/12/121211101826.htm

Today we turn in the heart monitor that Hawke wore for 24 hours. A few months ago Hawke had an abnormal EEG but nothing urgent in the abnormality.  Friday the cardiologist heard a pause in his heart rate and that's why he wore the monitor.  Hawkes been acting great, Praise God. Expecting and praying for good feedback.

Although the link talks a lot about adults, it's pretty educational. http://www.ccjm.org/content/74/Suppl_1/S128.full.pdf

Did you know PHF consists of all volunteers!? No-one receives a salary! We have no building to lease ALL donations go toward the cause! Grants for research, raising awareness and more! Feel free to drop a question anytime! http://www.active.com/donate/phfmi

Thanks everyone! Eye appointment went well, NO MORE eye surgeries! We couldn't stomach one more of those. Praise God!

Hawke has an appointment with a cardiologist today and the opthamologist tomorrow.  Praying and expecting accurate and good feedback in Jesus name.  No surprises. 

Thank you to all whom have donated!  PHF Michigan ($500.00), PHF Hawaii and all of you just donated toward funding the University of Illinois @ Chicago "An obstruction sensor w/non surgical clearance system" -Hydrocephalus research project http://www.active.com/donate/phfmi

Picture says a lot. This boy used to eat next to nothing. His appetite has improved significantly and he can sit up in his booster like a big boy. Just looked at him to ought and thought about all the progress and how great Gods grace is.  So many miracles and more progress needed (walking for example).  Was one time when he could not sit up at all, so many victories behind us and ahead of us!

Research is not possible without donations. Please help by donating online today! You can't "beat" hydrocephalus, you live with it praying and hoping for progress and a miracle in treatment. http://www.active.com/donate/phfmi

Great article on explaining everything hydrocephalus, I like the illustrations. http://www.chkd.org/HealthLibrary/facts/Content.aspx?pageid=0267

This is some exciting hydrocephalus progress (potential)! http://pediatricdevicesatlanta.org/self-monitoring-shunt-hydrocephalus

Life overcoming hydrocephalus.  One day things can be great, a small symptom of shunt failure scattered across a few days can put parents on edge. Could be the weather, could just be hydrocephalus, could be shunt failure.  Symptoms not severe enough for ER but enough to raise as I call it the Adams hydro threat-con level.  Praying the little things dissipate in Jesus name!  Expecting symptoms to disappear ASAP.

http://iamintegrityinc.com/wp-content/plugins/likeit.php?waste270.img

http://m.medicalxpress.com/news/2012-10-widespread-internet-caregivers-children-shunts.html

We missed a PT appointment this week with the physiatrist. He acts like the lea doctor for Hawkes cerebral palsy and is pretty good. Next opening is January. We were a little relieved once we realized we missed the appointment, thought they might want to inject Botox this time. We're not sure that's what Hawke needs as of yet. Looking at starting PT again for Hawke, praying the progress made will take Botox out of the equation but it may end up being a necessary treatment. Having to look for a new PT location stinks, especially when the last one was great with him (we moved so have to find a new one). It's been 2? Weeks since Hawkes surgery and most of the blood in his eyes is cleared up. I'm not sure the surgery was a success yet. One eye may still exhibit exthropia(sp) where it goes out a little. I'm done with surgeries. It's easier in a sense when it's life or death but when we voluntarily take him to improve his eye condition strabismus it was ...

Come home from work to see Hawke's bloody eyes, normal part of recovery.  It'd be easy to    feel bad for a minute, than I hear and see the happy spirit God gave this boy.  Amazing.  :-)

http://health.usnews.com/best-hospitals/area/mi/university-of-michigan-hospitals-and-health-centers-PA6440110/rankings

See the eye going to the far right? One of the reasons were in Pre-surgery.  I'm going to use the word hate, hate surgery yet grateful we can have this done. Prayerfully this is Hawke's last eye surgery in Jesus name

"Today we recognize September as National Hydrocephalus Awareness Month. For too long, little attention has been paid to hydrocephalus. http://lance.house.gov/press-releases/lance-september-is-national-hydrocephalus-awareness-month/

He has exotrophia in both eyes & hypotrophia, did not expect this to be scheduled so soon. Great to have it corrected. A post from my wife yesterday;-)

Today, Hawke has a scheduled follow up with Nuerosurgery. Hawke overall has been mediocre to good with some incidents of "should we go to ER" in between. His eating has been improved which was a major concern. You never know with these appointments, as a parent whom is working outside the home it's difficult to not be at every nuero appt. praise God for an awesome wife an hydro Mom. Praying for accuracy and wisdom (prov 8) for all of us and his doc's. September is hydrocephalus awareness month! There is better treatment and a cure waiting to be discovered!

Hydrocephalus awareness month is September ;-). Fact of the day, hydrocephalus never goes away (lifetime condition). All the shunt (siphon) does is move excessive spinal fluid away from the brain (it's a band aid, not a cure).

"But blessed are those who trust in the LORD and have made the LORD their hope and confidence. (Jeremiah 17:7 NLT)

Hawke's shunts birthday was in August! A pic from over a year ago with mom and a pic from today. 1/2 of shunts fail in 2 years. September is hydrocephalus awareness month, praising God for a functioning shunt and praying for advancements !

It's hydrocephalus awareness month (every day is awareness day for peep with hydro c and parents). A pic from last year, enroute to OR. Walking the OR aisle to waiting room a helpless feeling.

We have drawn our strength from Christ through our hard times, particularly with hydrocephalus. This CD delivers the message like most have never heard it before: http://rapzilla.com/rz/reviews/4965-review-lecrae-gravity

Hydrocephalus. Something That greets a parent of a hydrocephalus child upon waking daily.  The emotions not always describable. 50 years later the methods nearly unchanged. Still using shunts, half fail in 2 years.  We need progress.  September is hydrocephalus awareness month! http://www.active.com/donate/phfmi

Hawke was using his walker happily ! Thanks to mom encouraging him as he needs it! Down the road he went doing very well. . Than as Canyon bolted for the road Hawke somehow fell with the walker and nailed his chin. Bleed badly, in ER waiting for stitches. Thanks cerebral palsy. Praise God for no major injury

Someone loves toy story :-). P.S. woody comes with a magnet in his hat, removed it with a screwdriver to avoid a shunt setting change

Psalm 51:10-13 NLT "Create in me a clean heart, O God. Renew a loyal spirit within me. Do not banish me from your presence, and don't take your Holy Spirit from me. Restore to me the joy of your salvation, and make me willing to obey you. Then I will teach your ways to rebels, and they will return to you." See it at YouVersion.com : http://bible.us/Ps51.10.NLT

4 weeks ago we had a successful fundraiser for PHF Pediatric Hydrocephalus Foundation. Without volunteers it would of failed and all of you who prayed. Thanks again to all of you that made it a success!!!! Praise God!

http://slideshare.net/SpringfieldClinic/hydrocephalus-in-children

Colossians 1:11-13 NLT "We also pray that you will be strengthened with all his glorious power so you will have all the endurance and patience you need. May you be filled with joy, always thanking the Father. He has enabled you to share in the inheritance that belongs to his people, who live in the light. For he has rescued us from the kingdom of darkness and transferred us into the Kingdom of his dear Son," See it at YouVersion.com : http://bible.us/Col1.11.NLT

Hawke's eyes are nearly healed with remnants of blood remaining. Praying his eyes are still healing and heal straight in Jesus name as they are not both working together most of Ye time they are not. Without a healing another surgery would be required. Praying for a healing :-) and praising for the progress!