First Day of School

Reagan started school today!  We received her pre-K schedule last week but it wasn't exactly what we expected.  Last year Reagan was in Ms. Torry's class on Tuesday, Thursday and Friday with private therapy on Monday and Wednesday.  This year she is in Ms. Carolann's class Monday, Wednesday and Friday and we are trying to move her therapy to Tuesday and Thursday.  It's not an easy feat when some kids stay with the same therapist for 10 or 15 years.  We went to the Open House Friday and are very excited about her new classroom.  She is the only girl with 10 boys!  There are four other children with Cerebral Palsy in her class and we talked to her about why some children need wheelchairs before her first day of school today since two of the boys are in wheelchairs.  She was excited to go to school this morning and had a great time.  Ms. Carolann said she quickly became friends with Raphael (one of the boys in the wheelchair) and although she didn't talk much about her day, she seems excited to go back on Wednesday.

 

We've had a busy week. Cole also had his monthly visit from Heather from Early Intervention. She was very happy to see his progress and we have a few new activities to work on this month. He has been eating very well, walking around more confidently, and he continues to learn new words every day.

We also supported Macy's Shop for a Cause event at Fair Oaks Mall Saturday.  The promotion gave shoppers the option to purchase a $5 coupon giving them 25% off all their purchases.  100% of the coupon price was donated to the March of Dimes.  We were honored to be invited to share our story. Reagan drew pictures for several of the people on the sales team who raised money.  Evelyn (holding the picture) had the top sales and was born at 25 weeks.  With each event we support we get better at sharing our story and helping others understand the journey of a premature baby.  Someone said, "I had no idea a two pound baby was the size of a Chipotle burrito or that a baby that small could live. He looks so good."  Although each experience is a difficult remembrance of our past, they remind us how far Cole has come.  Not a day goes by that I don't marvel at the new things he learns and wonder how we are so blessed. 

Great Book - I Believe in You

One of my goals for the Bischoff Adventures blog is to encourage parents to share insights.  One lesson I've learned in the last three years is that we can't parent alone.  Our friends and family have been an important support for us.  I recently bought this book and want to share it with everyone and encourage you to post comments about similar books that you recommend.

Reagan is only three and I can already see how important it is to encourage her through the up's and down's of life.  I continue to admire Reagan when I hear her squeal, "Look mom, I'm doing it with lefty!"  How do we as parents encourage that excitement in our children's lives?

This book does an excellent job of sending the right message about facing adversity, learning from it and remaining positive.  I found a good book review if you are interested.  Enjoy!

CT Scan Results are Discussed

We met with Cole's Neurosurgeon, Dr. Myseros on Tuesday for a 6 month check and he was very impressed with how Cole is doing.  Specifically he was very pleased with his speech and that he was walking.  When I mentioned he is still seeing an Early Intervention Specialist and they are tracking him about 3-5 months delayed still he said, "no child born at 25 weeks with hydrocephalus will escape delays."  Something we of course know, but it's hard to hear.  Of course my question was, "does this mean he won't get A's or does this mean he won't be able to take the same classes as other kids?"  His answer, as with most doctors was, "time will tell."  We are so happy with how he's doing that we choose to focus on the positive progress we've seen lately.  We took him to Sports Authority the other day and let him walk (instead of being carried or ride in a cart).  At one point Reagan ran one way and Cole went the other and I thought, "here we go!"  We are so pleased he continues to progress.

Unfortunately we missed the doctor at the last appointment in February due to a scheduling issue (his morning surgery ran long) and saw the nurse practitioner. So we had a more detailed conversation about the CT scan. Overall he said the shunt looks good (the white spot in the middle of the brain on the picture below) but that his ventricles are "teeny tiny" (the dark spots at the bottom).  This is not necessary a good thing - it means that the shunt is withdrawing too much of the Cerebral Spinal Fluid (CSF) from the ventricles.  There have been many attempts at creating a programmable shunt so doctors can modify the "flow" of CSF, but they have thus far proven to cause more issues than be helpful.  The biggest concern with an overactive shunt is that the ventricles will occlude the catheter.  Think of it like a soaker hose in the garden - you need the holes in the hose to let the water out.  If the dirt gunks up the holes it backs up in the hose and can't release the water.  The shunt is the same way - the catheter has holes to drain the CSF but the small ventricles collapse on the catheter restricting the flow.  Unfortunately there is nothing we can do to fix it.  The US statistic for probability of a shunt revision in the first year is 40%.  However, Dr. Myseros's statistic is 10%.  We beat those odds!  We know we are in good hands and that he will make the right decisions for Cole. We know the probability of a shunt revision in the first 10 years is 99% but with the decreased ventricular size Cole has an increased risk of a malfunction.  We will just keep praying that it waits as long as possible and that we catch it quickly.  Cole will need another CT in February and we will have a follow up with Dr. Myseros then.

We also talked to Dr. Myseros about taking Reagan as a patient.  He said he would love to have her and that he doesn't see any issue with performing epilepsy surgery if it's needed.  As he said, "it's really not that hard Danielle, grey matter is grey matter."  He recommended we bring her back with Cole in February since she was just seen by Dr. Yaun. Below are two pictures of Cole with Christine Mason, Nurse Practitioner and Dr. Myseros, Neurosurgeon.

MRI Results Are In !

Wow - we've had so many adventures that I need share with everyone.  I apologize in advance for this being a long entry.

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.

Tiny Warrior Weekend
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

Reagan also went fishing for the first time this month!  After weeks of anticipation having watched Micky Mouse Clubhouse and seeing "gooey fish" she was very excited to go with dad and her pink fishing pole.  And kudos to dad - they caught one! It wasn't pink like she hoped, but she was excited none-the-less.









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!