update on therapy

Since the school decided Benaiah did not need therapy and his doctor did not believe that she sent us for outpatient therapy.  We did the evals yesterday and Benaiah did not do good on speech or ot, but did fairly well in pt.  So the plan is that we do speech 2 times a week and pt one time a week.  His hemiplegia is so mild that we missed the fact that his ankles are very tight, so stretching is necessary and also the leg length difference is causing problems in his back.  We go to the Orthopedic doctor next Tuesday.

Golf and swimming

Benaiah did really good on this trip.

He was an indian at the College of the Ozarks

He quacked like a duck on the ducks

And he golfed. His form was pretty good.

Our favorite was ice cream though. Well, besides swimming.

During Family Feud he had a cook out with Silas.

We ended up swimming every day and we went mini golfing.  We took Benaiah with last night and he impressed me with how well he could golf.  Here are some pics of golfing and ice cream. He never fails to impress me.  Thank you Lord for Benaiah.

Benaiah and Epilepsy facts

Benaiah is sick and so that means we are on seizure watch.  He has a nasty nose and cough along with sick eyes. So this means we make sure he naps and gets a good night sleep.  We may actually not see a seizure because we just upped his meds.  Thank God we did. Anyway I was searching the internet and I came across these facts. I then dug deeper and realized that Benaiah was doomed to his type of epilepsy as he suffered hypoxia and a stroke.  So here are the facts.

-1 in 26 people will develop epilepsy at some point in their lives.
-The prevalence of epilepsy is greater than cerebral palsy, multiple sclerosis, and Parkinson's disease COMBINED.
-More people die from seizures and seizure related deaths each year than breast cancer and AIDS.

It's such a prevalent disorder, yet so many know very little about it.


In America, Epilepsy is as common as Breast Cancer, and takes as many lives.

*Almost 500 new cases of Epilepsy are diagnosed every day in the United States.

* Epilepsy affects 50,000,000 people worldwide.

* One in 100 people will develop Epilepsy.


30% of those diagnosed are children.

* Epilepsy can develop at any age and can be a result of genetics, stroke, head injury, and many other factors.

* For many soldiers suffering traumatic brain injury on the battlefield, Epilepsy will be a long-term consequence.

* In two-thirds of patients diagnosed with Epilepsy, the cause is unknown.

* In over 30% of patients, seizures cannot be controlled with treatment.

* Uncontrolled seizures may lead to brain damage and death.

‎* Up to 50,000 Americans die each year from seizures and related causes.

* The mortality rate among people with Epilepsy is two to three times higher than the general population.

* Risk of sudden death among those with Epilepsy is twenty-four times greater.

* Epilepsy results in an estimated annual cost of $15.5 billion in medical costs and lost or reduced earnings and production.

* Historically, epilepsy research has been under-funded. Each year NIH spends $30 billion of medical research, but just ½ of 1% is spent on epilepsy.

* The Federal government spends much less on Epilepsy research compared to other diseases, many which affect fewer people.

A fight for speech and swimming day 4

We have been swimming every day and Benaiah is getting really good in the water.  I again though had my eyes opened on how bad Benaiah's speech is.  A pregnant lady and her 2.5 yr old was in the kiddie pool with us and the little guy, Eli, was talking up a storm to her.  I explained why Benaiah doesn't talk and I enjoy educating the outside world about pediatric stroke. But I am really sick of telling people that he can't say his name, he can't say how old he is.  Sometimes it is hard and today at the pool it was hard for me.  I know Benaiah is smart and has alot in his head.  I just wish he could express himself.  I got a call today that informed me that our insurance will cover one speech session.  Yep, that is right.  Just one.  It doesn't matter that at almost 4, next month- that he talks like an 18 month old.  So the fight continues.  In the mean time we are learning our colors with sign language http://www.youtube.com/watch?v=jVcJHv32i18 and we talk alot.  I will leave you with some pictures of our swimming today.

 Splashing Daddy by kicking

Swimming Day 2-No Fear

This guy came up with a towel for Benaiah.

CHASA

http://www.childhoodstrokeawareness.org/

Swimming or lack there of and seizure meds

Benaiah years ago loved swimming.  He loved the water and was totally into it.  Now is another story. On the trip with my parents we couldn't convince him to go in the hot tub.  Now about 2 weeks later with Denise in her time share, he is again the same way.  I did get him in the pool after convincing him it was not terrible.  Before you knew it he was jumping into Daddy's arms. Watch out Pools here comes Benaiah. Before we left Linn today, we stopped and picked up Benaiah's seizure meds.  I am not sure what the dr was thinking.  I have 60 pills that he is supposed to take 2 two times a day.  So if I have figured it correctly, we have a 2 week supply.

Update on our Day at St Louis Children's hospital

 We had a long day today.  It started with an appointment with Dr Copeland.  I liked him a lot and given Benaiah's history with urinary infections and will be having surgery on June 19. Then we saw Dr O.  I was literally sick to my stomach.  But things went well.  He gave Benaiah a good exam.  Benaiah charmed him.  Given his seizure history, Benaiah's diagnosis stands at complex partial seizures, severe speech delay and developmental delay.  The whole day was amazing and the Neuro stated that Mike W's letter of how he treated him really helped him.  We were hoping for no med changes and the doctor agreed that he will stay on Lamictal but will up it.  I was correct about not wanting more seizures to break thru.  Over all I was thrilled that by obvious evidence you can have your epileptic child in Ukraine and you can have a good doctor in Ukraine.  Thank you Lord for guiding our steps.  Thank you for Mike W in Ukraine and Dr. O in St Louis.  As of now, no new tests, no MRIs or eegs and No bloodwork.  We see an eye dr next month.  Dr O also thought Benaiah was a good candidate for augmentive communication device.

Montage and drs updates

Benaiah hiked really, really good.

This is his reaction to all of his drs appointments.  

May is pediatric stroke awareness month.  Benaiah is in this montage in 2 spots. 

 

We are back from the Smokies.  Benaiah traveled really good. Now starts the insanity of drs and therapy appointments.  Neurology, urology, physical therapy and occupational therapy.  Now we are also throwing in an orthopedic because his xrays came back showing his right leg is bigger.  No suprise to us, we knew it.  He will be, Lord willing, getting outpatient physical and occupational therapy since the school system refused to give him ot and pt thru the summer.