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.