Reagan's Neurosurgery Appointment
The most critical update is our meeting with Reagan's neurosurgeon today, Dr. Amanda Yaun. We haven't had a face to face meeting to discuss the MRI results from May and were anxiously awaiting this appointment. If you remember, we were told Reagan had abnormal activity throughout her entire brain. We were happy to learn today, that Dr. Yaun believes the seizures are coming from the original seizure focus. When an EEG is conducted, probes are placed all over the head. Given the area of resection was so deep in her brain, Dr. Yaun thinks the leads from the left side of the head were triggered by the original area. This is good news. She said she is hopeful that we can avoid surgery given the medication appears to be working. But she also said it's really too early to tell. The good news is that surgery is an option, however. If they have to do surgery, given the location of the seizure activity in the brain, she would suffer additional motor delays since it's so close to the motor strip. To avoid removing any white matter that isn't necessary, they would open her brain (same scar as before), they would lay an electrical grid (like last time) on the brain, and then close the skull with the wires hanging out. She will need to have seizures for them to triangulate the exact location that is causing the problem and it's unlikely for her to have seizures when she is sedated for surgery. So they will wake her up, let her play for potentially days until she has enough seizures to collect the data needed to complete the resection. Then they would schedule another surgery to open her again and remove the brain matter causing the problem. While we don't even want to think about this alternative, it is nice to know that it is an option. She said we will try numerous medications before we get to that point, however. Each one has different side affects for different children so it's just a matter of finding the right one for Reagan. Right now, we are hopeful that we have found one that works without keeping her so "snowed" that she can't stay focused. Unfortunately we also learned last month that Dr. Yaun has been given a promotion. She will be moving to Children's Hospital in Oklahoma City to launch the only Epilepsy surgical team in the state of OK. While we are excited for her and know it is well deserved, we are anxious about her replacement. She agreed to continue as a second opinion for us and asked to keep her updated on Reagan's progress. She wants us to return in six months for a follow up with the new neurosurgeon. Below is a picture of the MRI that shows the void where gray matter was removed and has now filled with spinal fluid.
We were invited to the First Annual Tiny Warrior Weekend at a friend's house on the Shenandoah River in WVa. This was a reunion with special friends who were all in the NICU around the same time as Cole. The weekend was a celebration of our friend's daughter Avery's second birthday and a celebration of the memory of her twin sister, Sienna. Cole followed Avery's path almost exactly, although she had two additional surgeries. It was wonderful catching up with 15 other 2010 Fairfax NICU preemies and their families (about 120 people were there), but it was also a very emotional weekend thinking about how far we've come and how much we miss Kendall.
Cole's Big Step
Another important progress to share is that Cole is walking more than he's crawling! With this new milestone his Physical Therapist, Jill, has recommended that we discontinue therapy. She wants to have me bring him with Reagan every once in a while so she can keep an eye on him, but he has given his monthly slot to his sister. So she now has OT weekly and PT every other week and he has therapy with Early Intervention monthly. We are very excited about this developmental milestone!
Reagan Is Potty Trained !
I forgot to mention this in my last blog. As they say, all good things come to those who wait. After our trip to Hilton Head we decided it was time to be a little more dedicated to the potty training cause. A few cute princess undies and a cool seat cover and she was trained in less than a week! We are very excited for her. Although she struggles pulling clothes up and down given her left sided weakness, she is very good at adapting and has almost mastered it. Letting go with her right to wipe on a public seat is still very difficult as she can't balance with her left, but again, she has been a great trooper and is learning to accomodate.
Preemies Today
I may not have shared with you (or maybe I have and forgot) but I have been a member of the Preemie's Today organization since the twins were born. It has been a great way to stay connected with other moms who have similar challenges and support new moms to give them hope. It has been a very cathartic experience. I recently volunteered to be the NICU ambassador ! This means I will be working with the local NICUs to share information about our program and ensure moms from that hospital have the support they need when they go home. I feel honored to be considered for the position and look forward to getting started!
KeCoRe LLC is on FIRE!
As many of you know, I started a consulting company to stay involved in corporate and government business. I just finished one contract developing training for a nationwide utility company. I will be starting another project next week developing a web based training for a government contracting agency. And I will also be deploying training for the VA Department of Emergency Management to firefighters in Central VA. Feel free to check out my website - www.KeCoRe.com or follow me on FaceBook.
Reagan Goes Fishing
It's a busy season with numerous doctor's appointments. Neurology last month, 7 therapy appointments, two neurosurgery appointments, and two opthalmology appointments this month and neurology in September. You will hear from us again soon ! Hope you're having a wonderful summer!
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