the hope is real...

I’ve gotten a lot of inquiries about Linleigh’s MRI last Monday.

Linleigh post MRI 10-1-18

While I do not have results, I was not really expecting results. Dr. Neuro simply needed the spine imaging for his surgical plan. For now I am operating under the age old assumption that “no news is good news.” 

They didn’t find anything unexpected and they got all the necessary imaging to move forward with surgery on October 31st, or I would have received a call. 

Speaking of the 31st, I have also received questions about the surgery itself. 

Now, before I get into details, let me preface...I am NOT a medical person, nor do I ever care to be. I hate needles and an IV in my hand would render my entire arm motionless from fear of messing it up and reliving the torture. My mom is a nurse and I'm not a complete idiot, but I am NOT medically inclined. 

I need things simplified. I once told an audiologist "pretend I don't know what an ear is." And while I mostly attribute that instance to her poor parent/patient communication skills. She is still far brighter when it comes to the human ear! 

So, bare with me. This is how I understand things to the best of my knowledge and abilities with some google assistance. 

Linleigh will be having a Selective Dorsal Rhizotomy (SDR) to reduce her spasticity. Essentially, the neurosurgeon will be selectively cutting approximately 2/3 of her dorsal nerves in the spine to relax her muscles. And already that is about the extent of surgical details I remember from our conversation with Dr. Neuro. In my defense he was talking about it while showing a video of the surgery actually being performed, which I couldn't watch, so I was distracted. 

I have read all I can find on SDR. And since Dr. Neuro came to Columbus from St. Louis, here is some surgical info from St. Louis Children's Hospital.

"SDR involves sectioning (cutting) of some of the sensory nerve fibers that come from the muscles and enter the spinal cord. Two groups of nerve roots leave the spinal cord and lie in the spinal canal. The ventral spinal roots send information to the muscle; the dorsal spinal roots transmit sensation from the muscle to the spinal cord. At the time of the operation, the neurosurgeon divides each of the dorsal roots into 3-5 rootlets and stimulates each rootlet electrically. By examining electromyographic (EMG) responses from muscles in the lower extremities, the surgical team identifies the rootlets that cause spasticity. The abnormal rootlets are selectively cut, leaving the normal rootlets intact. This reduces messages from the muscle, resulting in a better balance of activities of nerve cells in the spinal cord, and thus reduces spasticity."

Clear as mud?! 

After surgery Linleigh will remain still and flat on her back for 72 hours with an epidural. Once the epidural is removed a physical and occupational therapist will work to get her up and out of bed. Once she is up, she will be reevaluated to document her change in function post surgery to establish the need for rehabilitation. 

Once a request for prior authorization is approved by insurance, which we are told can take up to 7-10 business days, she will move to the rehab floor and begin intensive therapy for 2-3 weeks. Fortunately, we have also been told our insurance tends to be more timely in processing authorizations and have been getting them approved in about 48 hours. So let's all say our prayers that is the case in early November and God willing we will begin intensive therapy about 1 week post surgery. 

Once on the rehab floor, Linleigh is going to be a very busy little lady. A typical day will consist of approximately:

1.5 hours of physical therapy
1.5 hours of occupational therapy
1.0 hour of Rec Therapy or TR
30 minutes of schooling
30 minutes of music therapy
30 minutes of massage therapy
entertainment from Child Life
and Psychology is available should she or I (well...duh) need it.

I'm exhausted and emotional just anticipating this hospital stay. It's weird. I am excited, but nervous. Obviously! It's a major surgery! With a neurosurgeon! Dealing with the spine! 

But, the hope! 

The HOPE I have for all she possibly stands to gain from this surgery is astronomical. The pain management and relaxed muscles alone will ease in her care and quality of life drastically. But, there are countless parent testimonials of improvement in upper extremity movement, cognitive awareness, speech, and even positive emotional changes all due to decreased mental distraction from tight muscles. 

THE HOPE IS REAL!!!

Improvements in speech...let's just talk for a moment about what that might look like for a non-verbal child. Linleigh works with a communication device. And while we aren't at a fluent communication level she is quite the little stinker and ornery with it. She is funny and rotten and knows how to use it, but tight muscles definitely hinder and make it much harder for her motor planning. See she uses the head rest on her wheelchair to scan and then select the word she wants to say. It's a lot. It's not easy, it's frustrating, but she does it. With improved cognitive focus and awareness and less interference with her motor planning...oh the HOPE!!! 

And that's just with her device! 

If she gained actual speech?! 

If my 8 almost 9 year old spoke a word?! 

I think, I might just keel over and die! 

I'm realistic and know it likely won't happen, but I would be lying if I said my mommy heart doesn't ache for it. 

I'm a ball of excitement, anxiety, hope, and nerve. I liken it to my scheduled C-sections; I'm excited for the baby, not the surgery and recovery. I'm excited and hopeful for all she stands to gain, but the surgery and long hospital stay can be over already. 

So as October 31st draws near, please keep my sweet little lady in your prayers. Lift her up to our precious Lord and Savior for protection, healing and strength. Pray patience, endurance, and grace over our entire family. Pray for Corey as he manages, yet again, home, hospital and work life. Pray for our extended family members who will be supporting us. My mom (Grammie) and mother-in-law (Nan) will be filling in a lot of my gaps. Pray for me, as in order to be the mom I need to be for Linleigh already feel like less of a mom for Brody and Everly. Pray for my hopes. Pray for my expectations, even if I don't realize them now, I am certain they are there. 

I know God's got it! All of it! He always does. He's proven that time and time again.