Thoughts on June 20, 2015

It is Saturday night, and I've been scrambling all day to get packed and ready to go.  Up until yesterday I wasn't sure if our vacation was going to happen.  And I guess that is pretty typical of how life with a disabled and special needs child is.

Daniel had surgery to have a Baclofen Pump placed inside of him, on June 4, 2015.  This is a procedure that helps to reduce spasticity in the muscles.  Daniel's spasticity issues were getting so intense that I wasn't sure if I could manage him on a plane, etc.  It was time to move away from the "oral" baclofen medicine, and to what they call "intrathecal Baclofen" .  so off to the hospital we went for the surgery.

Everything went well, and aside from a couple of complications, it seems to be working really well.

This morning I had some sort of a mental meltdown. I'm not sure what it was really.  But as I sat staring out into my backyard I felt tears streaming down my face.  This is journey is a tough one, and as optimistic and positive I try to be, and try to move myself towards being, sometimes it still just downright sucks.

The State of CT Husky medicaid people are trying to take all of Daniel's skilled nursing care away.   It's complicated, but essentially some person at a desk somewhere in Hartford has looked at Daniel's file and decided he does not qualify and is not medically qualified for on going nursing intervention through out his day.  They are proposing to end it on June 27, 2015.   Daniel DOES received nursing intervention all day long.   They are making me jump through hoops like a monkey.

So here I lay, falling asleep while I write.  Wanting so badly to spill out some devine words of wisdom, but I can just say that we are on schedule for vacation.  I'm really really sad to be leaving my Henry behind, but I think a break will do me great.

Great.  as I wait to find out our fate with the nursing care.

I am also very thrilled that my You Tube channel has hit over 1000 subscribers.  I hope that if you are reading this, you are also a subscriber.  I think its weird, but I honestly have NO idea if any of my family members (except my mom and sister) actually follow us there.  Most of the comments, and interactions are from the You Tube community.  Perhaps people are just still so new to the concept of vlogging.  I'm not sure.

Time to get some sleep.  I have to wake up at 3am.  Yes I said 3 am.

Olease keep coming back. Life is great.

Julie Hasselberger  June 20, 2015
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14 HOURS IN THE ER, READMITTED, MUSIC AND THERAPY

Baclofen Pump Surgery Day June 4, 2015

The day before Daniel's surgery June 3, 2015

The day before Daniel's surgery June 3, 2015

Challenges and Blessings of having a special needs child

Special Day in Lower Manhattan

I am Julie Hasselberger.

They asked me for a "bio" and this is what I wrote.  Today is Thursday, May 21, 2015  

I am Julie Hasselberger. Mom of three children living in Sandy Hook, CT. I have a Bachelors degree in political science and an MBA with a concentration in Human Resource Management. In 2003 I left the full time corporate career world because my severely disabled child needed my attention, advocacy and care full time. I am outgoing, I love people, love music, and love God. I am a Christian and I believe that we have Hope through our saviour. Needless to say, my life is a daily struggle full of challenges that can be very overwhelming. I am always trying to get healthier, and that too is a tough battle as Daniel is just getting bigger. I love my children, Sarah, Daniel, and Thomas more than anything in this world. I have been married for 22 years to John Hasselberger, and marriage has its challenges dealing with differences in opinion and different personality issues. I've dealt with severe depression and anxiety for years, and I a true believer in "choosing happiness" NO MATTER HOW HARD.

I started vlogging regularly about a year ago to share my journey and my story. Its been a wonderful experience. My vlog is my main source of enjoyment these days, because I am capturing the daily life of my crazy family.

Life as a Mom to a severely disabled child is very isolating and lonely. You feel disconnected and on another planet all together. I cry ALOT but I laugh more.

I love to make friends... and its funny how I basically spend actual time with, none. But I have found so many friends who want to be there for me in the You Tube community and through my Special Needs support groups.

In life you never know what to expect. What matters most is love. It can be challenging when people who are closest to you dont "get you".... and the bills certainly have NO MERCY for people caring for disabled children in their own homes, giving up their lives for their children. Welcome to America.

Life is beautiful. Despite all of the negative people around us, the negative world we live in, we can choose to grab each moment and value it and love it. Live for now. Because the reality is truly this, all we have is what is now. The rest either is in the past, or in the future. One is gone, and the other is unknown. Love eachother now. Right now.

Mothers Day Creative Cupcake eating

Early Bird and Round Robin

When Will That Desk Be done???

Saturday stuff May 2, 2015

Exciting day Friday

Epic Cookie Fail

Epic Cookie Fail

Too Many Thoughts in my Head. Using Mindfulness.

Secret Sister Unboxing April 2015!!!!!

To Baclofen pump or not to Baclofen pump, that is the question

Yesterday Daniel saw Dr. Cruz-Zeno, who is a pediatric physiatrist.  He specializes in rehabilitation medicine, and he is one of the doctors on Daniel's team who has been seeing him for his entire life, since he was about 6 months old.

Daniel has been through so much, and his current amount of muscle spasticity is, and has been for awhile, a big concern.  He takes a medication called Baclofen, which helps to manage the spasticity, or tightness, of the muscles.  Unfortuneately Daniel still has periods of time when he goes into these complete and total spastic "fits" I guess I could say, for lack of a better word.

These are Yo Gi Bo Pillows.  We would love them for Daniel at home.

The Baclofen activates directly at the spinal chord level.  So the oral baclofen that he takes, takes a while to be ingested, and get to where it needs to get to.  There is another way.  It is call "Intrathecal Baclofen administration"  And essentially, they surgically place a pump into his body, which will administrer the medicine directly into the spine.  Its a more effective way of controlling the tone problems.

Daniel with his buddy and therapist Adam

Daniel's spinal surgeon has given me the name of a Neurosurgeon at Yale New Haven Children's Hospital.  So I will be calling for a consultation.  They can actually do a test run to see if this method is appropriate for Daniel..  Because of the amount and placement of Daniel's spinal fusion hardware in his back, it may be extremely difficult, if not impossible to place a baclofen pump into Daniels body.  But it's worth a shot to look into.

I have been procrastinating in my mind with this Baclofen issue for about 6 months.  But, as we were getting ready to leave the doctors office yesterday, Daniel went into the most extreme demonstration of high tone and spasticity that I have seen in a long time.  So the doctor got to witness it.  It took his nurse and I a long time to even get him back into his wheelchair.

This process is long and complicated...  this process called managing Daniel's medical care.  I'm exhausted right now, and have too many things to process.  Somehow I need to find a method for organizing myself in a better fashion towards goal attainment.  I don't have a literal second in my day, for myself.

This time I am spending, right now, on this blog is my one hour between when Daniel goes to school and I have to go to the next thing on my schedule.  I would really just LOVE to relax for a couple of hours and watch you tube, make videos, and manage my planner.  I need a better planner.

This is me and how I feel every day

So who knows what tomorrow will hold?  I don't even know what the next hour will hold.  All I really know right now my friends, is that I need another cup of coffee.  And an appointment with my psychotherapist before I mentally go wonky.

Peace and love until next time!!!   Please come to our You Tube channel, "Julie Hasselberger"

https://youtu.be/hunnIPWj1Eo

Taking Sarah Back horrible traffic

Respiratory scare and a new addition to the family, for Thomas