I have a prayer request, I know, shocking. But before that, I want to share a little something about a message I received yesterday, and one that echoes others I have received -- in someone asking how I get through this. All the years of challenges, obstacles, setbacks. How I cope..... I am a veteran on this journey. One whose child with vaccine injury, er autism, is one of the most severely affected medically. Behaviorally with respect to the fact that he cannot tolerate things being done to him.... Hair cuts, blood draws, ear checks, procedures where he must comply in any form or fashion. Brandon's sensory issues make those things nearly impossible. Some things he has learned to tolerate over time. Hair cuts and blood draws are relatively doable with little blood shed, on our part! But for him to understand to lay down after seizures, to sit still and allow for an x-ray, a scan, dental work, -- nope. Not even all the ABA in the world has helped one inch with those things. Our son is severely affected.
I am so happy for all those whose children have recovered to the point of understanding and even allowing those things. I am Praising God for all the parents who have fully recovered their child. I'm just not one of them. I am one who can simply Praise the God who gets us through. I am one who can say that HOPEISM gets me through all the defeats, all the obstacles. I am not one who can tell you that if you are good, and do good, that good will happen and all will be better for your and your child. I simply don't believe in that. I believe in God's plan, God's purpose. Not that if you do good, you will get good, or that if you are bad, bad will happen. Karma may apply in life, but not in Faith. I've been "good" so to speak, and yet still we have such suffering in our "Life with Autism" and in our son who remains severely affected by autism. I don't know why that is, I don't know that I ever will. But what I do know if that everything works for the Glory of God -- and we have experienced so very many things through these sufferings where we give th Glory in the victories, the endurance, the miracles here and there, -- to God.
One such thing, this is April 2015. Brandon for the past week has consistently weighed 146 pounds. Not since April 3, 2009 has he weighed 145 pounds. That was the highest his weight has been. He was 5'4" and weighed 145. Today, he is 5'9" and weighs 146. The lowest point since 2009 has been 126 pounds. It has taken us 6 years to get his weight back to where it was in 2009. Let alone where it needs to be today, like more around 165. Six years of setbacks. Of one precious pound gained only to have a seizure and loss of three additional pounds to make up. That's how it's been all these years in this seizure-cycle that we haven't been able to break. One precious pound gained, only to have seizures subtract three, four, or five pounds in the recovery process. Spending uncountable amounts of money and time in finding and preparing food that will pack maximum nutrition and calories. On the modified ketogenic diet, the tedium of balancing fats and proteins and carbs. All to have one pound gained then three or more lost with each seizure.
But finally, after six years, we are where we were, plus one.
Six long years to gain back 20 pounds.
It's mind boggling.
And we're still not even where we need to be.
That's another 20 pounds to go.
I've been trying to comprehend that these past few days. When that friend asked me the question, I tried again to think of what I could say in answer to "How do you do this for so long?" "Do we win?" I even went back and read my "Journey through the Bible" blog I write - where I've taken each days reading of the Bible and applied it to our "Life with Autism". I was encouraged by some of those thoughts I had written. The books of the Bible that were so filled with gloom and despair - there was always a scripture of Hope and the promise of Healing. In fact, some of the favorite, most profound scriptures I've clung to, were from the gloomiest, doomiest books of the Bible.
And like I thought then when writing my blogs, I can assuredly say now, "Yes, we do win." What God told them then, still applies now.
Be faithful.
Be obedient.
Cling to HOPEISM.
That isn't a promise that prayers will be answered when and how we pray for, just that they will be answered. Since August of 2010 Brandon's seizures have been relentless. We finally had a 35 day seizure-free streak. Five years of praying for such a break. Since 2009 we've been trying to get Brandon's weight back to where it was. We finally did that. Six years of praying for that. Brandon is 21. We've been living "Life with Autism" since he regressed from vaccine injury at 2 years old. Nineteen years of praying through that. We are far from recovered, but we have had so many reasons to give Glory to God in the endurance. In how he has sustained us. Sustained Brandon. And to have witnessed and been a part of such health revolution, such a community of warriors......
That is what sustains me.
What gets me through it.
That is how we win --
By NEVER QUITTING!
We win when we pray without ceasing, we win when we believe in a recovery we may never see in this world, we win when we hope when all hope seems lost, we win when we pursue healing, no matter how small the increments may be, we win when we advocate no matter how strong the opposition or how tired of fighting we are, and we win when we speak truth no matter how much our voice shakes.
We win when we pray without ceasing, we win when we believe in a recovery we may never see in this world, we win when we hope when all hope seems lost, we win when we pursue healing, no matter how small the increments may be, we win when we advocate no matter how strong the opposition or how tired of fighting we are, and we win when we speak truth no matter how much our voice shakes.
NDCQ!
Now for the prayer --
Be careful what you pray for, you may get it....
Team Guppy will undergo yet another challenge. As if the Traumatic Tap Lumbar Puncture from Hell with a Spinal Tap headache from hell wasn't enough; and lest I forget the 2nd degree burns that were very much caused by that..... wasn't enough of a challenge. I still have PTSD from that experience.
A medical professional believes that Brandon would benefit from IVIG. This person has advocated for it for our son - and we finally were approved to try it on our son. Insurance coverage and all.... I have to admit, I was kinda hoping doors would slam shut on that. I know that is horrible to admit, but when you've gone through the unrelenting challenges we have, and for so long, even the best of HOPEISM's aren't enough to make you not grow weary at the thought of enduring yet another challenge.
But we must. God indeed used this person to help bring us to this opportunity, and we must now suck it up and walk through it.
While I may not be convinced of the ability of Brandon to endure it, I am convinced of God's humor in us even thinking he could. This child that we can barely contain to have his ears checked, that we can't contain for dental exams -- is supposed to willingly sit still and allow 3 to 6 needles in his stomach for IgG to be subcutaneously infused over three hours. We feel for him subcutaneously is the best route for him, given that IVIG has a higher rate of adverse reaction. And we know from the lumbar puncture, if there is a chance of a bad reaction, he'll have them all.
We are to do the subQ IgG weekly.
I can't see that happening. I just......can't. I don't want to be a part of making it happen, but I must. We owe it to Brandon to try. For the first time, a nurse will be here to train us and oversee it in case he does have a reaction. After that, we can do this at night when he's sleeping or when he has a seizure and is knocked out.
But for this first one, we must attempt cold-turkey.
And so we will.
Pray for us.
We'll be enduring yet another Friday in "Life with Autism" while trying to cling to the promise of Sunday.
Now for the prayer --
Be careful what you pray for, you may get it....
Team Guppy will undergo yet another challenge. As if the Traumatic Tap Lumbar Puncture from Hell with a Spinal Tap headache from hell wasn't enough; and lest I forget the 2nd degree burns that were very much caused by that..... wasn't enough of a challenge. I still have PTSD from that experience.
A medical professional believes that Brandon would benefit from IVIG. This person has advocated for it for our son - and we finally were approved to try it on our son. Insurance coverage and all.... I have to admit, I was kinda hoping doors would slam shut on that. I know that is horrible to admit, but when you've gone through the unrelenting challenges we have, and for so long, even the best of HOPEISM's aren't enough to make you not grow weary at the thought of enduring yet another challenge.
But we must. God indeed used this person to help bring us to this opportunity, and we must now suck it up and walk through it.
While I may not be convinced of the ability of Brandon to endure it, I am convinced of God's humor in us even thinking he could. This child that we can barely contain to have his ears checked, that we can't contain for dental exams -- is supposed to willingly sit still and allow 3 to 6 needles in his stomach for IgG to be subcutaneously infused over three hours. We feel for him subcutaneously is the best route for him, given that IVIG has a higher rate of adverse reaction. And we know from the lumbar puncture, if there is a chance of a bad reaction, he'll have them all.
We are to do the subQ IgG weekly.
I can't see that happening. I just......can't. I don't want to be a part of making it happen, but I must. We owe it to Brandon to try. For the first time, a nurse will be here to train us and oversee it in case he does have a reaction. After that, we can do this at night when he's sleeping or when he has a seizure and is knocked out.
But for this first one, we must attempt cold-turkey.
And so we will.
Pray for us.
We'll be enduring yet another Friday in "Life with Autism" while trying to cling to the promise of Sunday.
