In an effort to make sure every detail of this ordeal is documented, Iâ€™ve decided to copy and paste all of my Facebook status updates regarding Ryderâ€™s health onto my blog in small chunks. Â Click on the links to catch up on Part 1,Â Part 2Â and Part 3.
12/26/14 – 6:58am:
Had no idea when we ordered this for Christmas just how much I’d need the reminder. Grateful for His promises.
Some time around 2:30pm:
Nothing new to report… Waiting, and more waiting. More tests being taken and sent out, but no results coming in. Physical and occupational therapy. Soonest we can come home is Sunday after he has finished his steroid course, but that’s not a guarantee.
**Edited to add: These two families (four adults and TEN kids, combined) loaded up a 15-passenger van and drove all the way up to Roseville to visit us. Â The kids helped pick out gifts for both boys, and there were even some treats for Mom & Dad. Â While these four came into the room, the others waited in the parking lot, in a show of solidarity. Â Little Savannah (pictured) and her amazing mama were both hospitalized last year with Viral Meningitis, so they know what a blow this kind of experience can deliver! Â This photo is currently framed in our hallway as a reminder of God’s promise that we are never alone.12/27/14 – 9:01am:
I spent the night at home with Evan last night, but just received exciting news… Ryder has gotten permission to leave his room and go for a walk! He has to wear a mask and gloves, and still can’t go in the playroom but he’s been begging to “go somewhere” for four days now so this is a step (literally) in the right direction.
The bottom line is we still haven’t solved the mystery. We have another sedation MRI scheduled for Monday to see if there is any change in spinal cord swelling. We will start an immune-boosting treatment called an IVIG (intravenous immunoglobulin – basically plasma replacement therapy) tonight, which will last two days.
We are awaiting a visit from a physical rehabilitation specialist who may recommend an in-patient physical therapy program in UC Davis that could last multiple weeks.
What we DO know is that God knows our mighty warrior by name. He promises great things for this boy’s life and so we rest in the truth that His plans are best.
Still more questions than answers. Still lots of waiting, praying, and crying. Still so much gratitude for the love and support and prayers from more people than we’ll ever get to meet.
**Edited to include this photo, which shows Ryder working with the resident Physical Therapist. Â Here, he was asked to squeeze the ball between his feet and “throw” it to her. Â As if you didn’t believe us about Ryder’s physical strength “before”, please check out this little boy’s rock-solid super hero abs. Â 🙂
Some time around 7pm:
Ryder is beginning the first of his IVIG treatments. They had to relocate his IV because the old one was too painful, and he’s so afraid of “pokes” now that he freaked out quite a bit. They gave him Benadryl to try to ward off any allergic reaction to the new meds (a possible side effect) and it induced a pretty gnarly anxiety attack. Waiting and praying…
First IVIG treatment is in the books with no adverse reaction. He had a 5-hr nap, and is enjoying his “last meal” before going NPO (no food or drink) at midnight. Hoping to hear that we have another sedation MRI tomorrow so we can get it over with asap. One more steroid dose and one more IVIG treatment tomorrow.
12/28/14 – some time around 12:30pm:
A thousand games of Go Fish, a cut-throat Memory tournament, and the Lego Movie on repeat. No food or water since midnight last night… And just before I hit send, the doc appeared. MRI at 1:15 tomorrow. One more IVIG treatment tonight and we’ll meet with the rehab specialist to see whether we go home or to an in-patient facility. He will also be tested for Polio just to rule it out.
He’s had physical therapy and pancakes, and the neurologist paid us a visit.
Still no answers. There is a chance he could regain full function, but there is also a chance he may never regain any function… and everywhere in between. Life will be very different for us, at least for a while.
Enjoying a veritable feast (as far as hospital food goes)… Awaiting his second IVIG treatment now.11:06pm:
There was a little mix-up in the preparation for Ryder’s final IVIG treatment tonight, and they ended up having to start over (the machine was hooked up incorrectly, so he was only receiving saline). Thankfully a nurse who helped with Ryder’s spinal tap the other day caught the problem, solved it, and has stayed on top of monitoring it ever since. Praying for miraculous results.
We were pleased to see tiny glimmers of improvement in his grip strength and also in the extensors of his first two fingers. Again, we celebrate the small victories, while also understanding that we are not out of the woods yet.
I’m home for the night with Evan, and will return tomorrow morning. Sedation MRI scheduled for 1:15 so please pray that there are obvious signs of change since the last one, and that he handles the procedure without incident. His anxiety is very high, but he’s handling himself like a champ and I’m so proud of him!
Many of you have asked how you can help. Right now, prayer is our best weapon… so please continue! But a sorority sister of mine shared a wonderful idea with me tonight, and I want to pass it on. She works at Children’s Hospital in Seattle and is currently collecting donations for toiletries (travel or hotel size), current magazines, gently used books, earbuds or headphones, etc. to bring to families who are facing lots of time in the hospital. Other ideas include soft blankets, iTunes and Starbucks gifts cards as well as gift cards or coupons for local restaurants.
According to doctors, we *should* be discharged tomorrow night (although we don’t yet know if we’ll be going home or to an in-patient therapy facility)… so I’m not asking for these items for us. I’m just suggesting blessing other families who are or will be experiencing the same thing we’ve been going through, and thinking of Ryder as you donate.