I'm dreaming of a white Christmas...and Spinal Fusion

November 27, 2012

There are snowflakes falling at 7:55am.  I must say its quite peaceful here.  Everyone is at school and work...and I'm home alone resting.  Because, I have a kidney infection that is excruciating. The pain started yesterday and I went right to the doctor due to the fact that my health is of great value around here and there is no time for sickness.  A typical UTI turned bad due to a badly diagnosed antibiotic.  Hopefully this heals up now...but I'm miserable.  Have so much to do...  but perhaps its a way for God to tell me...slow down Julie. Slow down and be calm. Look at the snow. Pray.  Focus. Blog. 

Thanksgiving/Daniel's birthday was November 22, and it was a very nice day. We had a quiet holiday, and I bought Daniel 15 Balloons to celebrate.  It was very colorful for him.  Then on the 24th 30 ish teenagers came over to celebrate Sarah's 17th birthday.  We turned the basement into a winter wonderland...it looked pretty and she had a great time.  I've always wished that I could rent out a hall for her to have a real party with a DJ and all of the special things that so many other kids have around here.  But I hope she knows that we do the very best that we can.

Last week...  Oh man.  The nurses and I spent two full days taking Daniel to pre-op appointments. Pulmonary, bo-tox for saliva, x rays, blood work, Surgeon consultation, anesthesia, physical therapy, etc etc.

Everything is looking pretty optimistic, but we have one more test tomorrow on his heart.  The curve of his spine has progressively worsened.  This totally needs to be done.

This is Daniel's Spinal x ray. The curve of the spine is over 90 degrees

There is a long list of things to be done before this surgery....  and I'm working on it. John is planning the care of the kids schedule at home.  I am working with the doctors on the post op recovery planning.  Where in the heck am I going to put a hospital bed? Looks like it will be next to my Christmas tree this year....   Special wheelchairs, nursing visits, nursing care, medicine, pain relief, physical therapy, a new wheelchair...  etc. etc. etc. etc.

Due to the crazy kidney infection I am losing this entire week of work.  And I wonder just how I can possibly pull off Christmas.  It will be small.  Small and quiet I am sure.

So today is Tuesday, and there are 6 days until surgery.  Tuesday... and I need to rest and recover.  And focus on those words that fly at me repeatedly, "Julie you have to take better care of yourself"

Duh.  You all don't think I know that?  Perhaps if other things around here shifted onto the shoulders of the people who are free to come and go when they please, then I could focus on my health.  Right now, I am 100% Daniel, Sarah, Thomas, house, cars, finances, and bills....  Phone calls to make, appointments to schedule, folllow ups, equipment, medicine, laundry, the animals, ....  and when someone's brain is so over taxed its a challenge to go to the gym.  I could just let things go, but then while I'm "taking care of myself" I will just obsess about the things that are not being done.

So for now...  as it snows and looks Christmasy and peaceful. I will pray for God's help.  For faith and complete restoration of mind and of body here.  Pray that somehow financial needs will be met over this month of December and that all will fall in line.  Pray that Daniel will remain healthy. Pray for people who are angry to find peace and forgiveness.  Pray for kindness and charity and love to spread like an epidemic everywhere.    There. I feel better.

Wondering, will there possibly be an early dismissal from school today....hmmmm  and I need to  call and schedule Sarah's audition for MaryMount Manhattan college..... and.... and.... and.....

Monday. What...no BIG STORM THIS WEEK???

Today is November 12, 2012.  Monday.  About 16 days until Daniel goes in for his surgery on his spine.  I feel like the world is kind of closing in on me. Between Sarah's college applications, my schedule of MOM things...

Today Daniel's bed is being repaired, later his lift system. Routine wear and tear, the boy is getting older, and taller.

It was a blessing yesterday to bring Daniel back to church, and for me to have time to worship.  I had not been in so long...  months and months.  I felt revived and connected to Jesus when I left, and I'm trying very hard to maintain my faith and positive feelings.

At least there is no SNOW or bad weather predicted.  We can accept that.

Parties to plan... Daniel is 15 on November 22, and Sarah is 17 on November 20....

MY creative side is napping right now so I am going to end this post.  My MOM "things to get done" side is taking over because I have things to do, places to go....    as always.

We were still cleaning up from Hurricane Sandy this weekend....  I think finally everyone is back to normal, even with another nor easter that hit last Wednesday, gave us snow...but the snow melted fast.  We won't forget this Superstorm...   and I have to keep reminding myself that our home really really needs a generator.

Random thoughts Starbucks inspired on a Friday night...

As I sit here, on September 7th...its Friday..  and across the street Thomas is playing football.  And across the table from me Sarah is doing her psychology homework drinking an iced tea...  and across town Daniel  is in his room with Marques (nurse) relaxing after a very long day.

Across my mind go a myriad of thoughts...every day.  Will I be able to survive the next storm?  What is emotional abuse anyways, and maybe my perceptions are skewed, although my inner me tells me...nope...you are screwed.   And what about all of the financial issues, making survival happen while taking care of Daniel.  Will I get what I need to send Sarah to college?  Why in the world does my face hurt under my eyes when I touch it?  So much pain...  so much ache...  fibromyalgia? or just insanity.  Nope, definitely fibromyalgia. Face? Probably chronic sinusitis.

Its all catching up with me...and once someone told me that I could not sustain my pace forever.  Well, I am going to die trying.

Raising Daniel has been a joy beyond words, trickled and sprinkled with bits of this and that.

Across town, Daniel is probably lying in his bed...with his body shaped like a letter C...or maybe an S because his spinal curve is getting worse. And worse. And worse.  And how fair is that for him?  He is the sweetest, most innocent guy ever..and he endures the worst of the worst.  But maybe it doesn't affect him when Daddy yells at Thomas and Sarah...because he doesn't get yelled at.  He is exempt...  because he is helpless.

Daniel has redirected my life, and that is not to say that I understand or even know which direction I am going in.  I am being steered into a foggy abyss...without a clue as to what each day is going to bring next.

Sitting here with Sarah in Starbucks, while Thomas practices football, while Sarah does her work, while Daniel is probably watching a movie at home...  just sitting here thinking how good this coffee is.  And how much I really don't want to be home right now.

So now I feel like going into my pictures....  lets see what I can find...and I'll post them here... in my randomness of thought...   Yes...I seriously feel like a mother gone insane.  I hope you enjoy the pictures...

It is a tough role that I face...that we face. Day by day...minute by minute...

When still legs meet the water.

There is something quite magical about taking a child with spastic quadraparesis, out of a wheelchair and bringing their non moving legs into the fluidity of the water.  Therapeutically it goes without saying, water is very healing and effective for range of motion and exercise.   Thankfully this summer, the warm weather has made the town pool at Treadwell Park warm enough for Daniel to tolerate.  He is getting tall, and heavier...and we find that we have to take turns working with him in order to give our arms and shoulders a rest.  Seeing how much he loves the water...  is such a joyful thing...  priceless moments as they would say in a VISA commercial, right?

Summer has been warm and cheerful this year, with Daniel receiving a hefty daily dose of additional phosphorus and calcium supplementation to really build up his bones.  We are still waiting to see how much improvement in bone health and strength has been achieved, but just seeing him kick and thrash and throw his body around in the pool....convinces me that there is quite clearly some degree of strength improvement.

But even the pool, as much as he loves it, is risky business.  One swallow of water will go down into the airway and cause problems with breathing so we have to be very careful not to ever let the head go into the water.   NOT always an easy task.  Sometimes even a splash from a nearby child can land in his mouth and cause a rattle of congestion.   But so far, no respiratory emergencies.  Watching the children flinging themselves off the diving board...or swimming underwater to retrieve a diving toy...I wonder if they know how lucky they are...but some things are just assumed...  motor skills... check...moving on.

I've been telling myself every single day, that a positive heart has to take control. And that as a strong woman and Mom...I will find a way to get through all of the ups and downs...  we've come this far.  Its a story of triumph, of compassion, of people helping people, and of never giving up on my child.  Never giving up on my family...and giving them what they need.  It is not easy....and quite frankly...more like a war than a struggle sometimes.  

Today is July 24th.  I have been looking for a job but have had absolutely no luck.  I am studying to take my property and casualty exam but that will take alot of time.  I am always on the look out for some grant, program, part time opportunity, anything that will help bring in funds.   Here is where I deep sigh at myself.  The piles of issues are still there, like a big thick wall that encloses me.  Every day I pray with all of my heart that this will be the day a miracle comes our way...  that somehow God will continue to shine his light on us.    

We are a Mom, a Dad, and three kids.  And Daniel is the one kid who needs 100% of our attention, 24 hours a day in order to keep him safe, healthy, happy, and lets face it... Alive.    That degree of attention steals away from making money and being prosperous...because 1) our expenses are ridiculously always increasing for him and 2) my career aspirations have been stomped on because I'm out of the work force for 10 years now.   I have an MBA and they all tell me, no thanks.

So there is some solace in the warmth of the sun, the ability to swim and be together...  God has blessed our family since June by bringing us closer together... and that has been wonderful.  

Daniel is a quiet, non verbal, teenage boy with big wide eyes studying the world.  I can only imagine what it must feel like for him to be immersed into a swimming pool!!!  You can feel happiness just radiate from him.

 Daniel is in Special Needs summer school until August 9th.  He is receiving physical therapy, occupational therapy and speech therapy there.  He is also receiving physical therapy and occupational therapy at home. We are doing everything we can to keep his scoliosis flexible and keep his positioning safe.

Father's Day and Swimming

Daniel has been doing well...  so far no illness or setbacks in our quest to quench his weak bones with phosphorus and calcium supplementation.  He will have blood work at the end of this week to see how much  progress has been made....and the surgeon for the scoliosis surgery will consult with the bone doctor (endocrinologist) to see when surgery will be possible.

Still having alot of doctors appointments, and dentist appointments and normal daily life.  Dealing with insurance, and equipment suppliers, and wheelchair repairs, and lift van repairs, and medications (oh my Gosh so many prescriptions) ...  its a jumble of non stop multi-tasking.  

Throw into this salad of life....  managing the life of a soon to be senior in highschool and a soon to be 6th grader...a house, and trying desperately to earn money with whatever spare part time work I can find.  Its a recipe for insanity.

But one saving grace has been the YMCA of Brookfield. They have a financial scholarship and we have been able to take Daniel to the therapy pool there several times a week to swim.  He loves to swim...his body responds miraculously to the water.  

This is the last week of school here in Newtown, CT... it officially ends this Thursday the 21st.  Then what?

Mommy anxiety is still at all time high...because just when I seriously start considering going back into Human Resources (which is not my desire, but my backgound) they all tell me ..."sorry, even with a masters degree and 15 years experience...you've been out of the workforce for 10 years and we wont even look at you"    Its kind of humbling, because you work so so so hard to become the best and the brightest you can be...and then you have to go away to be a full time Mom to a disabled boy...and BOY with that comes more advocacy and intelligence than ever.  But they won't even talk to you.  WHAT IS THAT!!!!!

So I  keep on going... taking care of these kids.  Praying for miracles. Praying for daily strength and good health.  Many blessings are here...we just need to see them.  Here are some pictures from Daniel's swim on Father's Day with John.  Swimming with Daniel is a great joy for us...

Lungs and Love and Atelectasis

It is Monday morning, February 27th 2012.  Today I had to take Daniel for a stat x ray to check his lungs. He was having "crackles" this weekend and strange breath sounds.  So off I went in a mad rush to get the x ray done and try to get to work at my 4 hour shift at the deli.  Life is always a mad rush for me.  The x ray doctor said Daniel had a Left lung ATELECTASIS.  That is my word for the day. Atelectasis. So I looked it up, because Daniel has had it before.  Kids with progressive scoliosis start to have more compromised respiratory issues.  And here we go.  All I want is to keep this kid healthy so he can make it to his scoliosis surgery...which will resolve the problem of the dreaded "Atelectasis".....  


I have this vision of Daniel being able to hold himself up straight without curving over to the left. His curve is so awful to look at. I miss his straight spine, which was there until about a year or two ago.




Symptoms
If atelectasis involves just a small number of alveoli, then the symptoms may not even be detectable, but if it grows rapidly then it may cause an acute condition of 'shortage of breath'. The level of oxygen saturation in people suffering from this disorder is also less. The loss of deep breathing also causes the heartbeat rate to increase. If atelectasis has been caused because of some other disorder that the patient is suffering from, then the symptoms will be similar to those of the existing ailment. It is very likely that a patient suffering from this condition will lose his energy and stamina. Cough, fever and pleural effusion are some other significant symptoms of a patient suffering from atelectasis. A very unlikely symptom, in cases of people suffering from an acute condition of atelectasis, is a bluish skin. This happens because of reduced oxygen level in the skin. If atelectasis is not treated and continues for a prolonged time then it may result in lung infection




I'm feeling alittle bit sad today.....because sometimes everything just seems gigantic and insurmountable and I want to curl up and give out a giant cry. But I go forward, and I keep smiling and I keep trying to provide the best quality of life that I can for this child.   Because I AM THE CREATOR of what he knows in his life.

And that is a big responsibility...  and a labor of great gigantic love.

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Daniel Gets Up...but its really hard

His legs are floppy and he doesnt weight bear on them like he used to.  I owe so much to Amy, our physical therapist who comes and helps get him up.  I know that if I did this with him more and more he would get stronger.  In watching this today I committed to working more on standing than ever before.

Daniel had a femur fracture in April...ever since then he has had issues weight bearing and he is very weak and floppy.

Plus...he now has a 36 degree scoliosis curve.  These are the things I could do more of...I could just relieve some of the other pressures around this house.  No one else here ....no one...seems to realize the critical importance of getting Daniel weight bearing and moving..

He has a house full of equipment that insurance paid for...so why not push it to the limit.  I only wish sometimes that John would try to learn how to put him in some of this equipment. But its my job.  I don't mind really...Daniel totally connects with you when you are working and helping him.

Short little video here will show you just how weak his legs are.  I'm so worried about this and about the spine.

I had alot more to say tonight...  but I'm spending too much time learning how to edit video.