We're home from D.C. and have successfully finished Henry's treatment! Today is December 1st, the beginning of Ellie Kate's Month of Reckless Love and yet, I find myself falling a bit behind on it all. I promise to soon post about EK and how YOU can show reckless love this Holiday Season!
It is with great excitement I share this detailed update on Henry's recent medical trip to Washington, D.C.! This trip has been in the works for months now - Henry's specialists here in Oklahoma "encouraged" us by sharing, our only real hope, the only possibility for PANDAS relief and for or a chance to see "Our Henry" again, was for him to receive the specialized IVIG treatment. This was the very same treatment we blessedly received through an epilepsy grant, just a year earlier from which we saw great results! The goal is, the more IVIG sessions completed, the better the outcome is for the patient. Henry's chance is higher now, since this is his second round of treatment, for which GOD has provided.
Unlike our previous trip for treatment, this chilly travel was provided by YOU - our precious friends and supporters, even with a few strangers jumping in. In reality, we fully believe it was Our God, Jehovah Jireh ('The God who Provides') who made this trip happen, who orchestrated and allowed every dime to be given, every travel plan to fall in place (big or small), and SO much more!
Bottom line: I wouldn't be writing this now if it weren't for your sacrifice and generosity, all of which does not fall lightly on my spirit or mind; in fact, it will stay with me forever, along with your precious prayers, messages and calls.
Go Fund Me Page - LOOK at what YOU did!!!!!!!!!
With Hope,
Dr. Elizabeth Latimer heads the clinic where Henry was seen and ultimately, she signed-off on this specific treatment, agreeing with our doctors here in Oklahoma. Dr. Latimer is one of the leading doctors and researchers on PANDAS/PANs, even appearing in the recent 20/20 program about the disease as well as in the documentary, "My Kid's Not Crazy".
Once we had arrived and were situated in D.C., and once we check-into the office, Dr. Latimer read through Henry’s charts once again, and giving the final stamp of approval on the treatment. Even though our entire trip was based on receiving that treatment, it was still a relief to get that very final sign-off.
The nurse started Henry’s IV infusion Monday morning, November 19th and he was an absolute warrior through it all, not even batting an eye when the IV was placed. Because of Ellie and Lucy, H has grown up around needles and syringes, both pokes and prods. What an intertwined blessing of which I could never dream up: Our God has seemingly, both given and allowed, all of these things within the lives of our children. My Babies benefit from one another, even in the darkest, scariest things; even when time transcends the action, memory or experience. They are each other’s teachers and students, mostly without knowing, and every part of it makes a lasting, changing, positive impact on the life of the other, however long that might be. What an indefinable gift, with layers beyond my comprehension!
Both infusion days went off without a hitch. During the procedure, Henry played video games on his own and with the two other children receiving infusions that day. Both of the fellow-Infusers had been diagnosed with PANDAS; One was a young teen girl and the other, a boy, exactly Henry’s age. I took GREAT JOY and comfort in hearing Henry connect with these other precious kiddos. I giggled with satisfaction upon learning the slightest details the children openly shared about themselves. Hearing about their own quirks, what makes them tic (quite literally, as all three have been diagnosed with various tics). I drew-in deep, heavy and happy sighs of relief for Henry (sighs only a mother-figure can understand), as I heard our fellow infusers chat a million miles a minute, just like H, almost shouting with excitement in their responses, “Yoouu feel that way sometimes, too!? and, “I get scared to eat, too! ", followed by, "Yes! Even when I’m hungry, I get scared!”. Priceless.
Taking Infusions like a BOSS
Sitting among fellow PANS/PANDAS families during treatment was also a very-welcome, yet unexpected event, and I walked away feeling as though I had been to an NKH Conference or an extended Hope Link support group meeting. It was incredibly sweet.
Being REAL and RAW here: I have accepted NKH, special-needs, the world’s limitations, the finality of what is defined as a, “terminal” disorder. I have mourned the death of dreams I once had for the little girls I'm blessed to have birthed. I can share those dreams without getting super emotional, even though it's been a long road, even though it's taken months and years to wrap my mind around. I am not yet in that place with Henry. I don't believe (nor have a reason to believe) PANDAS will take Henry's life and have no evidence he will eventually pass-away because from complications of this confusing disease. However, I'm having a hard time accepting the fact that part of PANDAS is literally a, "mental" AND "physical" disorder. This Child, whom God prompted us to have; the One the Spirit told me would be an NKH-free, "healthy" boy . . . isn't healthy. He may not get back to his old self, to who we really know him to be, and that both scares and angers me. Most of all, I just want to make things better for Henry.
Dealing with the stress of travel - he was so brave!
Since we've been home, Henry's had a difficult time, all-around. This time, he has been incredibly nauseas from the infusions, vomiting still The first few days, Henry was EATING, which was quite the welcome sight to us, as his parents!! The feeding-frenzy has slowed-down dramatically and today, there were heavy tears because he was "starving", but couldn't eat, "anything" - it all hurts his tummy (which we've had checked out).
Since the infusions included strong steroids, Henry has been bouncing up and down and all around, often staying up most of the night in what we call a "happy-wild/manic" state. Henry has been HAPPY but today, had a big setback with his friends. I'm wondering if that will continue to worsen IF his PANDAS will worsen? I don't know - no one knows until we get there.
For now, here's what I'm clinging to and praying for . . .
- I'm praying the Father will fill us with HOPE instead of despair. He's faithfully reminding me that He provided this treatment for a PURPOSE and even if I don't see transformations just yet, I need to give it all time. God makes ALL things beautiful, in HIS time. I'm praying God will use these IVIG transfusions for Henry's GOOD and for God's GLORY!!
- I am praying God will set Henry free from PANDAS, as he truly compares it to being tied to it or locked into it.
- We are praying God will heal Henry's brain, specifically the frontal lobe.
- We are praying for our other children, for comfort and PEACE - I so desperately want a home of PEACE and PANDAS threatens that everyday.
- The doctors say it will likely take around two months for the infusions to start showing their benefits, but we are asking the Lord to do it even NOW
Friends, FOREVER we are grateful for your help in getting our Son the help he needed, help we couldn't provide on our own. You stepped in, showing us Reckless Love, beyond imagination. I look forward to keeping you posted on all the GOOD things yet to come for Henry!
Ryan
"At times, our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us.” - Albert Schweitzer
“Thanks be to God for his inexpressible gifts!”, 2 Corinthians 9:15
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