What's so Funny? Or can't you help it??

Random laughing episodes.

Trying to decide why Daniel is having repeated episodes of non stop laughing.  They could be Gelastic seizures and instead of discussing it...  I'll show you via this video..

Some things that I deal with are pretty clear cut.  But if a new type of seizure emerges, and disguises itself as joy and laughter, then how would we know.  Well, he could be sound asleep and then he wakes up laughing and thrashing.  He does this to the point where he wheezes and gets all sweaty.

This week I have been very sick, so I've spent some time in bed watching video footage of Daniel.

Warning there is one disturbing video of Daniel getting upset before he has to get on the bus.

I have sent video footage to Dr. Francine Testa, at Yale New Haven Hospital, our Neurologist...and she is going to review it and let me know what she thinks.

Until then, I'll keep watching him very closely...  .

..

Mommy's Pain

OK world. This is a real illness.  I was diagnosed many years ago, and it has been getting worse and worse with stress.  Making it hard to do anything.  My family thinks I'm lazy because suddenly during the day I need to lay down and sleep.  I can't help it...it feels as though someone pulls the plug on your energy.

I have pain on all 18 of the tender points...  the worse ones today are my shoulders, back and really bad pain on the back of my head behind my ears. My neck is swollen... and my entire body just aches like I have the flu...  almost constantly.

Caring for Daniel never stops...  but it hurts my body

It gets exhausting that so many people do not recognize that this exists...  they just tell me to exercise, lose weight, take vitamin D, and it will go away.  Those things help reduce the pain of symptoms...but Fibromyalgia is Chronic.   HAH!!!  even the spell checker does not recognize the word.

 Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.

A TYPICAL Julie Chronic Fatigue Nap attack

Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.

Women are much more likely to develop fibromyalgia than are men. Many people who have fibromyalgia also have tension headaches, temporomandibular joint (TMJ) disorders, irritable bowel syndrome, anxiety and depression.

The pain associated with fibromyalgiaoften is described as a constant dull ache, typically arising from muscles. To be considered widespread, the pain must occur on both sides of your body and above and below your waist.

Fibromyalgia is characterized by additional pain when firm pressure is applied to specific areas of your body, called tender points. Tender point locations include:

• Back of the head
• Between shoulder blades
• Top of shoulders
• Front sides of neck
• Upper chest
• Outer elbows
• Upper hips
• Sides of hips
• Inner knees

Fatigue and sleep disturbances
People with fibromyalgia often awaken tired, even though they report sleeping for long periods of time. Sleep is frequently disrupted by pain, and many patients with fibromyalgia have other sleep disorders, such as restless legs syndrome and sleep apnea, that further worsen symp

Anyhow, I just felt like writing about the fact that each day of my life I wake up in pain.... I take Lyrica, Ultram, Effexor and Wellbutrin along with alot of advil...  and once it kicks in I can function.   Depression and feelings related to the stress of home often put me into a hopeless cycle of not exercising and getting tired.  But if I force myself to just walk...get fresh air...  I feel better.   I really know what helps....but I have to manage three children including Daniel.  

It is stressful even just trying to de stress the stress.   And a life of pain becomes a physical life of pain.  Makes you really wonder why sometimes.

Just keep going Julie..  Just keep going.

On the topic of fundraising and helping eachother

There is no shame in reaching out for help.  The reality is really pretty bleak for most families dealing with any kind of massive medical crisis.  Every weekend there seems to be a fund raiser, or cut a thon, or story in the paper about someone who is doing something on behalf of a loved one.  Disabilities, cancer, medical trauma, ...these are not things we plan on.  They are not part of the American Dream.   When I walked down the aisle on my Wedding Day 19 years ago... I never anticipated that my life would look the way it does right now.  Not after triumphantly completing my Masters Degree and setting my sites high on the corporate ladder.  I was an advocate of "Working Mother".  Now I am a mother who is an advocate of a severely disabled child.

But with all the love I can muster and the strength I can find I am trying to give him the life he deserves...and that makes it all worth it.   There really is no "plan" that is in our control....   There is no such thing as control either...   I am a Christian, and through prayer and hope and faith...  I learn the skills I need to continue on this mysterious journey.

But I can't do it alone.

October 2011

Dear friends,

As you may, or may not know, our son Daniel (13) has a severe condition known as Polymicrogyria. His brain is about 80% deformed.  It goes without saying that Daniel’s life is precarious and each day he faces seizures, respiratory fragility/aspiration risks, and overall physical and developmental problems.  He is fed via g tube, can not talk, is in a wheelchair and has developed scoliosis this year with his growth.   He will require surgery to correct this. 

I have put together a terrific team of medical professionals, and therapists that see Daniel and work with him as much as his insurance allows.  I manage his many doctors appointments, hospital trips, insurance bills, equipment, educational intervention, medication and supplies, and most importantly providing Daniel with a joyful quality of life, a safe home, and comfort.  It is a full time job.  I was terminated from a full time job in 2002 because of Daniel.  Shortly after that he needed major hip surgery at the age of 6…and I had to put my job search on hold.  It is still on hold…as his needs have significantly increased with growth and age.       

I’m raising funds for my son because we have so many needs and expenses that raise the bar so high above normal life!.     I have started a blog/website  julieandjohnhasselberger.blogspot.com   with ongoing updates that I am going to keep current.   

Looking. Searching. Seeking. Praying.  Mostly praying.  For resources.

And asking people…

“Can you help in any way help our family”  The goal is reach $10,000   in order to pay medical bills, pay for van repairs, pay an $1800 therapy bill,  repair our home(needs a lot of repairs), and set up a Fund in his name in order to build for his future.  He needs a new car seat ($800) and now Medicaid is not paying for diapers so we will have a huge expense there.  

  “Do you know anyone…or any resources…or is there anyone else I could talk to?”      Its ridiculously difficult to take care of a disabled child in this economy, and we have a family of 5.   

We can survive if we can take care of Daniel’s expenses.   I am planning on going back to school for my nursing degree. I have a Bachelors, and an MBA in Human Resource Management…which provided a great career for many many years.  But the traditional corporate world doesn’t accept professionals who have been out of the work force for awhile, and who need flexible schedules.  

Perhaps you know of someone who can…and you can forward this to them. 

With much love and gratefulness,

Julie Hasselberger

Psalm 34

Hasselberger Contact information

Julie, John, Sarah, Daniel and Thomas Hasselberger

35 Bennetts Bridge Road

Sandy Hook, CT  06482

203 426 8674

203 788 9602

jhasselberger@snet.net

julieandjohnhasselberger.blogspot.com