Sunday, September 27, 2015

September-October Whirlwind!

I thought getting back to school was a trick, but trying to get kids back to school, a million doctor appointments and illness has proven trickier!  Here's a glimpse of our September and October:

September 8: School Starts for Josie (and the other girls)
September 9: Josie misses school for a Eye Appointment that lasted 4 hours
September 15: Oncology Appointment
September 16: Feeding School Follow-up
September 18: MRI (extended from normal for additional eye MRI) Sent home due to congestion
September 18-20: Occupational/Physical Therapy training - the therapist go through training and trial new techniques on kids - Josie was one of them.
September 22: Neurology Appointment and Botox injection  Cancelled due to Sinus Infection
Pulled Josie from school and church to try and prevent her from getting any other illness.
September 28: EEG (sleep deprived)
September 28: Dentist Appointment
October 1: MRI (rescheduled date)
October 5: Josie's Head Surgery to place titanium plate

Phew!  Amid all those appointments, Josie went to school for a couple weeks, the other girls are in basketball and soccer and we are trying to just do something as a family!

On Monday, October 5, Josie is scheduled to have a cranial restructure surgery, in other words she is going to have her soft spot where she is missing part of her skull fixed by placing a titanium plate over the void.

Initially our cranial/facial doctor had said we could use some of Josie's own ribs to fix this void, but after a 3D CT scan, he found that the void is much larger than he anticipated and using ribs was no longer an option.  Currently her void is around 20% of her skull - that's pretty large!  The only other option at this point is to place a titanium plate in the void.  She will continue to grow and will need another plate around age 10-12.  We are bummed that she will need two surgeries, but also relieved that she will not have to have some of her ribs removed.

The surgery will take several hours, recovery though is only two days max in the hospital as long as there are no complications.  

At this point in time, Josie's oncologist considers the tumor in remission and feels that the soft spot is more of a danger than the tumor.  Nevertheless, the doctor still scheduled one more MRI prior to the surgery and we are glad for that.  We would rather have them check now than to find something during or after her skull surgery.

In July we started noticing that Josie was showing signs of what appear to be break-through seizures.  We called her neurologist and they upped the anti-seizure medicine and told us to call back in 2 weeks and let them know how the new dose handled these seizure.  Well...she is still having these seizures, the new dose didn't stop them.  Her doctor now added a second seizure medicine to see if we can control them with a different drug.  She will also have a 4 hour sleep deprived EEG done to monitor seizure activity.

Josie had an extensive eye appointment- it literally was extensive as we were there for 4 hours!  The exam by the doctor was very thorough and thankfully she was able to see more of Josie's eyes than ever before.  The downside is that she was able to finally see Josie's optic nerves and the left one is quite small.  There is no way of knowing if this a genetic or tumor/surgery related problem, but it does tell us that the eye is always going to be weak.  We will strengthen it as much as possible, but it will not improve the actual nerve.  We are going to try an extreme strengthening regiment by patching (2-3 hours a day) as well as a dilating eye drop in her good eye twice a week to try and get the left eye stronger.  Surgery to straighten her eye is not far down the road for Josie.  The doctor is adding an additional MRI imaging to measure just how small the nerve is and to hopefully give us a better idea of what is going on with her eyes.  The upside is that she got new cute new glasses out of the appointment! :)

We started Josie in school and she did not adjust well.  She was picked up and dropped off on the bus.  The first 2 days were good bus days, but she was hysterical at school due to some sensory issues.  Her fear then extended to getting on the bus. She threw up 2 times on the way to school due to her reflux issues because she was  crying too hard.  The team at her school cleaned her up and kept her there and she ended up having fairly good days.  Hard to watch her crying as she gets on the bus, but we also know she needs to face fears just like we all do.  We have been told many times that the first month is usually hard for kids with attachment and sensory issues.  Now that Josie has been sick with a sinus infection, we have pulled her from school until after her surgery.  We may have to start all over, but we can't take the chance of her getting something else prior to surgery.

Finally, one of the hardest things to do in prep for Josie's surgery will be to cut off all her beautiful hair!  The surgeon told us that they would need to shave a large portion of her head in order to keep infection rates lower.  Since she would look pretty goofy with only one portion of hair, we have decided to shave it all off.  She has enough hair to donate to the same foundation that the older girls gave their hair too previously called "Children with Hair Loss".  Josie will be stunning even without her hair and yes, it will grow back!

Please pray for us as we go through this next few weeks.  We covet your prayers to keep her healthy and have a successful surgery with no complications. 

Blessings to you all!
Marc & Darcia


  1. Thanks for this update. It is so helpful to know exactly how to pray for you all. I am praying that Josie stays well, so that surgery can go as planned.

  2. Prayers for your dear family as you continue to walk this hard journey for His glory. He loves you so!

  3. Thank you for keeping us updated on your sweet girl! So sorry to hear of the rough road she has been on with illnesses. Hopefully she will steer clear of any others before surgery. Continued prayers for Josie, and your family my friend! ~Crystal