QUESTIONS WITHOUT ANSWERS

I used to write blogs all the time, but that all stopped on March 10, 2011 when My Heart turned to me in the doctor's examination room and said, "Don't blog about this."  I assured her that I wouldn't, because everything was so fresh, painful and raw at that moment.  It's been almost five months and this will be the first blog I've written since that day.

As readers are aware, I absolutely adore my Grandlove and his mom, My Heart.  That has only increased since my last writing.  We received news from the doctor that day, which has strengthened our bond.  I always felt that My Heart was a good mom, but since that time I have witnessed a remarkable young woman who has shown courage, strength and tenderness in a truly heart-breaking situation.  When the doctor said, "Your son has Leukodystrophy," I knew what the prognosis was, but my daughter had the courage to ask, "What is the life expectancy for this?"  She was able to ask this most difficult question, without panic showing and tears spilling.  The young doctor (aren't they all young?), sighed and hesitated before she said, "I'm so sorry.  There are no treatments and he will not live long." 

My husband, My Heart and our Grandlove numbly left the office  and went down to the lab for the first of many blood draws.  Our Grandlove also had to produce a urine sample, so we had to wait awhile.  To pass some time we sought solace at the food court.  All around us were people talking, eating, laughing, caring for their little ones and yet our world consisted of our small table and the overwhelming barrage of feelings we were trying to handle. 

When my hubby mentioned that we were at a wonderful hospital, My Heart expressed her fear and frustration, "What good is a hospital, if there's no cure for what will kill my son?"  We had no answer to that question.  Five months down the road and we still have more questions than there are answers.

I can't tell you how much blood has been drawn for tests.  All the tests to determine the type of Leukodystrophy have come back negative (when the lab actually ran the correct test.)  We have met with specialists to address the difficulties that have impacted our sweet, little one's life.  Pain has been a huge issue and we are still working with the physical medicine doctor to find the proper dosage of oral meds to help with spasticity and pain. 

Feeding has dramatically changed from the normal abilities of a toddler.  He has no head control and swallowing is difficult.  One fear is that he will aspirate and fall victim to pneumonia.  He has always loved food, and so we make sure that the variety of textures and tastes keep him interested.  Pedisure has been a blessing, although insurance refuses to pay for that as well as Simply Thick for his water/juice.   Having this diagnosis has loosened up our priorities for feeding, though.  If he will eat a Pop-tart and drink his Pedisure, that's a great breakfast.  It takes about an hour for him to drink one sippy cup full of Pedisure and about thirty minutes to eat the Pop-tart by tiny "birdie" bites.  We were told by the nutrientist to mash his potatoes (he does love his 'tators) with real butter and whole milk.  Sweet potatoes with butter and brown sugar do go down real well, too.    Don't think all we feed is junk food.  It's just hard to find protein that doesn't choke him.  Smooth peanut butter in teeny-tiny portions is one source that we have used.  It is an "easy choke" food, so we make sure we have him position just right and his mouth is cleared before he gets another bite. 

He receives therapies in the home a few times a week, which helps with the spasticity and interaction with his surroundings.  He responds well when in the swimming pool and we exercise his legs for him.  We've even gotten him to kick in response to pleasure in the water.  "Water Therapy" soothes both him and us.

In a couple of weeks we go back to another specialist to discuss a feeding tube.  Our little guy has trouble getting enough down, that he doesn't have as much strength as he needs.  From what we have gathered from other families, the feeding tube will help him so much by both making sure he has enough fluids/food and he won't have to spend so much energy trying to eat.  He will still be able to "pleasure eat", which is great 'cause he is a social eater.

The list of the types of Leukodystrophy that he doesn't have has increased with each testing round, but we aren't any closer to finding out what type is affecting him.  In the long run, we realize that over 50% of the cases are never classified to what type. 

All the Leukodystrophies have this in common:  They are inherited; they take away "normal" childhood milestones; and they fracture the hearts of the people who love the child.  We love our little guy and any of us would trade places with him if we could, but since that is impossible we keep loving him, entertaining him, providing him with a stimulating environment and continue fighting to keep the PAIN away.

So, that is what has kept me away from this site.  I couldn't sit and write about this without sobbing.  I still weep and wail at the injustice of this all, but then I sniff, blow my nose and find something else that will make my sweet guy laugh.

GRANDLOVE: LOVE BEYOND MEASURE

We took this Sweetness to meet the doctor who has begun our journey in earnest.  All of us were impressed with the honesty of the doctor when he said that what is affecting our little guy is a mystery.  A huge battery of tests began Friday afternoon and more are already scheduled. 

Bright eyes followed all the doctor's movements and quick, little, chubby hands grabbed the shiny instrument used to test reflexes.  When asked if our little guy was always so happy, we could answer truthfully that his mood has been the one thing not affected by whatever he's battling.

We have no answers, but at least we have a doctor who listened, examined, and took our concerns as his own.  I feel hopeful, because once we receive a diagnosis, then we will know the monster that is attempting to steal our precious little boy.

NO ANSWERS: JUST MORE ANGER AND FRUSTRATION

This week my Heart took her son to his pediatrician and that "doctor" should be horse-whipped.  She made the little guy scream in pain and still didn't take his condition seriously.  No blood work, no x-rays, no Cat Scan, no MRI; nothing. 

Everything on our little Grandlove is physically regressing, except for his magical smile, his sharp little brain and his ability to make our hearts sing.

This coming week we go to a pediatric neurologist in a nearby large city, so maybe that will be the beginning of answers.  Can't get a direction for our journey until there's a diagnosis.  Nerves, sleep and emotions are all frayed. 

I keep praying for God's Will to be done and acceptance on our part. 

THE EYES HAVE IT: HOW TO TURN FEAR INTO SLEEP

Throughout this week I have endured extremely stressful times.  The factors involved in creating this stress don't amount to much alone, but the whole is much more than its parts.

• Cataract surgery, early Monday, when everything should have gone as before.
• Seeing through a "red plastic screen" in afternoon.
• Add many floating drops of "oil" to the gauzy screen on Tuesday morning.
• Poking, prodding, bright lights for examination.
• Doctor adds additional drop twice a day, burning assures me of correct placement.
• Wednesday morning, sight has gotten worse, second doctor consulted.
• Concerned mutterings accompany the poking, prodding, extremely bright lights.
• Immediately sent to downtown Houston for specialist appointment, without eating, drinking.
• Strange directions, congested traffic and enormous, costly parking garage.
• Dodging traffic, with the aid of an assisting arm and the aid of only one eye.
• Dilation, waiting, bright lights, examination, poking, prodding and no answers.
• By late afternoon, quick bite and the puzzle of finding way home.
• More drops, more waiting, more questions, more fear, not much sleep.
• Thursday, nothing to eat or drink, before returning to downtown Houston.
• Patience is wearing thin, with traveling, traffic and no answers, just more questions.
• New doctor, new lights, new drops, new tests, new examinations, new questions.
• After consultation, treatment is determined.
• Explanation is given and fear is at a peak.
• Needles are to be inserted in the eye socket, below the eye.
• During this part of procedure, I came to the edge of passing out from the pain.
• Since I didn't want to start over, I convinced myself that I could and would stay alert.
• Withdrawing fluid and inserting antibiotics into the eye was weird, but painless.
• Multiple drops applied and patched for the journey home.
• Two hours later, midway home, patch removed for drops and the world was duplicated.
• Double vision, double the anxiety and double the pain.
• Pain medicine made the rest of the ride home tolerable.
• Early Friday morning, return to doctor in different part of Houston.
• Tension by this time was equal to the frustration with incomplete sight.
• Drops, bright lights, examination, waiting, more examination, more poke, prodding.
• A slight increase in vision was the ultimate reward for this painful, frustrating week.
• Two more prescriptions (total of seven types of drops) and we wait.
• Monday morning, local doctor and then Friday we return to Houston.

How did I pass this time without too many drugs, you might wonder.  Well, I spent many hours going over how many sayings involve the most precious organ of my body.  I will give you a few that I thought of, just to prime your pump of memories of eye sayings.

1. Eye of the Tiger.
2. Lying Eyes.
3. Eye of the needle.
4. Beats a poke in the Eye with a sharp stick.
5. Eye of the beholder.
6. Eye on the sparrow.
7. Shut-Eye.
8. In the blink of an Eye.
9. Bedroom Eyes.
10. Betty Davis Eyes.
11. Got my Eye on you.
12. Can't believe my Eyes.
13. Evil Eye.
14. Eyelets.
15. Eye piece (microscope).
16. Eye glasses.
17. Eye drops.
18. Eye lashes.

And the list would continue until the waves of sleep pulled me into the land of not caring about diminished vision.  Amazing thing, this old mind is, sometimes.  I know that in the whole world of hurt, my week is nothing, truly, I do understand that.  However, it's been a bad week for me and mine and I hope to SEE an improvement on all fronts soon.



So in closing, let me leave you with this somewhat familiar quote.  I only knew the first two sentences, but the last two made me laugh in a week without many smiles.




“Cross you heart, hope to die. Stick a needle in your eye. Jam a dagger in your thigh. Eat a horse manure pie!”