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

Long Overdue Josie Update

January 14, 2015

HAPPY NEW YEAR!!!

It has been A VERY LONG time since I last posted on Josie's blog.  I have toyed with starting a new blog about every day life with Josie and our other girls Reese and Eliza, but at this point, I'm doing well to even get this update written.  Someday though, you might see something new from me!

Today we begin a new chapter of therapy and learning for Josie.  We begin Intensive Feeding Therapy in hopes that she will learn how to eat the majority of her calories by mouth.  It is intense for a reason, Josie and I will be at Mary Free Bed for five days a week (Monday-Friday) from 8am to 2:30 for 6-8 weeks.  Feeding times will be 8am, 11am and 2pm.  They told us to prepare like we are in a full time job.  We are excited about this opportunity and have much hope that she will learn what she needs to learn to eat with her mouth instead of through a tube.  She is showing so much interest already at home for eating, it's quantity and skill that we are lacking to move forward, which this program will help us with.  Please pray for us, as this will be a crazy ride the next several weeks.

As for other things with Josie, I'll try and update you without being too lengthy, but this kid is full of life and lots of good things happening.

Starting with the MRI results that Josie had at the beginning of December.  Everything looks stable - which means she remains in remission!  WooHoo!  As we continue to have these good results, they (Oncologist Doctor) are extending her MRI's further out from each other, so now we only go every 6 months for imaging.   Exciting and scary at the same time.

Cognitively, this kid is doing really well.  Last year we had her at Ken-O-Sha Early Childhood Center.  Once she got over her separation anxiety, the school year was WONDERFUL!  Josie grew so much during that year and absolutely loved her teachers.  At the end of the school year though, they told us that she would need to move to the main campus of Ken-O-Sha because she had reached the top of what she could do at that particular preschool.  We toured the school and were mostly set to send her, except for one logistical piece that we couldn't seem to figure out.  The school is a 25 minute drive one way if I drove her there and much longer if she took the bus, an hour plus ride one way, so two hours on a bus a day for a half day program.  We finally made the decision to keep her home this year and I have been doing home school with her.  God paved the way for this to happen and allowed many good people to help me set up for this in a short amount of time.  Josie loves having school at home and will actually ask me if we can do school even if we have other places we have to go in the day. Our next step is to start working on school options for next year. 

Conversation with Josie is very interesting, please be patient with her if she ever has a conversation with you someday.  She is learning the art of communication, but she takes many pauses, repeats herself and will usually need me to prompt her with part of her thought that she is trying to communicate.  Most of the time we can help the listener, but sometimes it just takes a while!

Many have seen Josie walking with only the aid of one of us holding her hand or under arm and have asked if she is walking on her own.  She currently cannot walk on her own - if we were to let go of her hand or arm, she would fall almost immediately.  Josie is missing a few links in the mobility process in order to walk on her own.  The transition from laying down to sitting up is still a struggle and she cannot do this yet with out help - she is getting better, but still has to have help.  Then the transition from sitting to standing is almost non-existent - this will be the next phase once she learns to get up from laying down position.  Once piece at a time right now!  Josie also doesn't have the protective reflex to stop herself if she were to fall from a standing position.  We hope that will come as she learns each of the different stages.  For now, she loves walking with our assistance and hopefully will learn to use her walker more for a bit more independence.

The final thing that I will conclude with is that Josie is in a Dance and Music class through Arts in Motion.  She is the only one in this particular class, but she LOVES her dance and music instructors.  Music has become a very important component to Josie's everyday life.  For Christmas she received a mini guitar (similar to a ukulele) and a drum set and loves her instruments! 

Thank you to all who continue to care and pray for Josie and how she is doing!  We are so thankful for this little lady - she definitely brings spunk and spice to our lives!

Blessings,
Marc & Darcia