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

Hunting Chipmunks and finding a Ben's Bell

Please don't leave without saying good bye

I think that it is so important to any relationship, mother child, husband wife etc  to kiss and hug goodbye each morning and kiss and hug hello. 

I woke alone with Henry by my feet and my husband and younger son had left for the day. Daniel was sound asleep.  I sleep in a small bed in a room by myself, with Henry my dog.  I can't sleep in my own bed because I snore.  I have been told that I can sleep there any time I want, as long as I don't snore.  

I can't ever make such a promise and I have repeatedly caused him great stress in the night with my snoring. So I don't sleep in my bed.  He snores too but I don't mind it. Funny how that is. 

So a person who needs to be comforted and loved sleeps alone in punishment to herself because of snoring. The doctor says I snore because I am too overweight. I don't feel like I will overcome that. 

But at the very least I asked him and my so to please always say goodbye before you leave. I was thrilled when he said he was sorry and would do so for now on. He said that he loved me and just didn't want to wake me.  The next day he came and kissed me goodbye and I was so happy that he understood. 

It only happened that one day. I woke today and everyone was gone except me and Daniel. Henry was sleeping on my feet. He is such a source of comfort. And I had to get up and take my meds and drink some coffee by myself.

The sun is peeking through the clouds and the birds are singing. I gave myself a hug and said a prayer.  So many of us are just not on the same page in life.  

Always hug and kiss those you love when you are leaving them for the day. And coming home from the day. 

You never know.  So now I face my day.