In an effort to make sure every detail of this ordeal is documented, I’ve decided to copy and paste all of my Facebook status updates regarding Ryder’s health onto my blog in small chunks. Click on the links to catch up on Part 1, Part 2, Part 3, and Part 4.
12/29/01 – 7:40am:
This is definitely NOT the way we planned to celebrate, but today marks 13 hard-earned years of marriage for Ryan and I. We’ve been through more trials than we bargained for, and have received more blessings than we deserve. And I’d still do it all over again with this guy. We make a pretty great team, Ryan Barr… Happy anniversary, I love you!
**Edited to add: Just after posting this to FB, I received a phone call that the radiology department had a spot open up, and that Ryder was being prepped for his MRI as we spoke. I was panicked at the thought of not being up there with him, but remembered that God was in control, and Ryan was there. It took me by surprise, but it was also a relief because the sooner he had the MRI the sooner he could eat! Evan and I scrambled to get ready, and sped up the freeway…
Some time around 11:20am:
Praise God, our boy is back from his MRI, and Evan and I got here literally just in time to greet him. They did sedate him, but did not have to intubate this time, and he seems to feel pretty well. We’re checking to see if he can eat a little bit, and waiting to see a million different doctors. Will update as we learn more. Thank you for your continued prayers!
Praise God for his grace and faithfulness. This morning Ryder had his second MRI. We see a great response to the treatment on the scans, and clinically he is showing an “awakening” in his reflexive response on his right elbow. He has a very small amount of activity in his extensors (2nd and 3rd digit), and his grip is slowly strengthening.God is amazing. He is answering prayers. Please don’t stop praying for my boy; he likely has a long road ahead of him as he regains function in his arm.
Happy 13th Anniversary Megan Megan Jackson Barr, I love you, and I’m glad that you are here for me and our boys. You rock, and I wouldn’t hesitate to do it all over again if the time machine turned on.
I’ve been trying to upload a video for a while now, and hospital wifi is being cranky so the video will have to wait. And every time I sit down to update, another doctor or specialist comes in… so here’s the latest:
We had a visit from the neurologist and a physician this morning, and they showed us the before/after images from ryder’s two MRI’s. Even to our untrained eyes, the improvement was obvious. The steroids are the likely cause of the decrease in swelling and he’ll be on a month-long tapering regimen. The best news is that the neurologist was able to elicit a reflexive response for the first time!
Later, we met the rehabilitation specialist who confirmed that the improved movement wasn’t a fluke. He also confirmed that we will not need in-patient care for physical therapy… so WE ARE COMING HOME TONIGHT!
The physical and occupational therapists just left after giving their final assessments. He’ll be wearing a sling to help protect his shoulder muscles while he’s up walking around and playing, but overall, life will resume as normally as possible.
“Normal” is relative, as there are many changes that need to be made and lots of re-learning will take place over the next weeks and months. We still don’t know how much (if any) of his motor function will return, or how long it will take, but we are trusting that God has complete healing in the works as we speak.
Right now they’re classifying his current condition as “Acute Transverse Myelitis.” As test results roll in, we hope to identify the cause, but it will be quite a while.
We are humbled by the outpouring of love and support from all of you, and ask that you continue to include us in your prayers.
We are looking forward to spending our first night at home together in more than a week… and Ryder can’t wait to see Lobo!
***Ryder is NOT contagious, so there is no risk of passing something on to anyone. However, his immune system is in a delicate state right now, so if you or someone in your house is sick, please hold off on visiting until everyone is well.
We’re home! The boys have been bathed and tucked safely in bed, and we won’t be far behind. So many emotions wrapped up in this thing… gratitude, fear, worry, excitement, anticipation, the list goes on and on. We don’t know what our future holds, but we are certain that God will be with us every step of the way.On the way home, Ryan and I were talking about how it kinda feels like the first night we brought Ryder home from the hospital. We’re SO excited to be home, but then we think “Now what do we do? Are we qualified to take care of him?”
Ryder is already experiencing a bit of pain. We believe this is just part of the deal since he’s been laying in a bed for 8 days… his body has been pushed to its limit and now he has to get it to work again. We took his mattress off the top bunk and placed it on the floor hoping to keep him safe, but still make it feel normal. We’re praying for peace of mind (for all of us), focus, and comfort (for Ryder).
Medication starts tomorrow, and will continue till the end of January. I’m sure it’s super gross, so pray that Ryder is willing to take it, that we measure accurately (because they gave us juuuuust enough), and that it continues to encourage improvement.
Thank you for your continued prayers! I think I hear my pillow calling…
**Edited to add: As we got closer to home, Ryder asked if he could see Dr. Mike (our beloved chiropractor). We knew the office was closed, but called in a favor, and he was sweet enough to meet us at the office after hours to adjust our patient. We arrived home to a “Welcome Home” banner draped across the inside of our garage, and a huge bouquet of orange and blue balloons from our incredible neighbors. These people have been incredibly selfless throughout our hospital stay, coming over every day to entertain and feed Lobo. They even learned how to use the clicker and take him for walks. This lifted a HUGE burden off my heart and I will be forever grateful.
Night one was tough. He is anxious, and very sore from laying down for so long. His muscles are certainly atrophied a bit. We are basically full-time physical therapists now.Praying for focus, endurance, low-frustration levels, and HEALING.
12/31/14 – 6:59am:
This guy woke up feeling pretty chipper after our first uninterrupted night’s sleep in about 10 days! Still sore to the point of tears, but overall ok… He even asked to put his sling on (something he’s been avoiding). **Edited to add: The sling is required when he’s up and about to protect his shoulder muscles from being overstretched, or the joint from dislocating.