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

September MRI Results

September 4, 2013

Josie's scans are stable!!!  Praise God! 

The phone calls from the oncology office are so brief,

"Hello, is this Josie's mom?"

"yes"

"The doctor wanted me to call and let you know that Josie's scans are stable - no changes from the last one."

"anything more we need to know?"

"no, nothing more.  Glad I got to be the one to share this with you.  Have a good day!"

That's it.  A phone call that can make us sing praises or it could make us cry.  We are thanking God for the singing praises version.   

We appreciate the many prayers that go up for us at these MRI scans and so many other times.  Josie is an amazing kid and she is a miracle child - we can't wait to see how God continues to use her life.

Since I am writing, I will give you a few more glimpses of how Josie is doing and how she is developing.

We have a big 3 year old now - her birthday was in July and we had a quiet celebration with family as Marc was leaving for Malaysia the day after her birthday.  Thankfully he is back and had a good trip with many cultural experiences. 

This fall we have decided to put Josie in a special needs preschool at the Campus Early Childhood Center, a Ken-o-sha school.  She will attend 2 days a week, although it is a program that runs 5 days a week.  With all she has gone through, 2 days a week is about all we're willing to do, plus she is in multiple therapies a week, which would be too much for her. 

As for her therapies, she has weekly Physical and Occupational therapy at Spectrum Pediatric Rehabilitation.  She loves her therapist and at this point in time thinks it is just a weekly play session.  Josie is doing much better at walking with assistance on her left leg, which means it is getting stronger.  She now has a daytime brace and a nighttime brace.  The nighttime brace is not going real well yet, we are working on it, but it usually gets taken off sometime during the night by me or Marc because Josie wakes up crying from it.  We'll keep working on it and she will hopefully get used to it.  Josie's left arm is making progress, but tends to be the weaker extremity.  She still does not use her fingers on command, but she is starting to stretch out her arm more and will actively try to do things with it.  She will have botox again in her arm later this month.  We did see some good progress after she had her first injection.

We had a Feeding therapy evaluation last week and the evaluator believes she is starting to make good strides toward eating by mouth.  But in order to make progress, she needs to have Feeding therapy twice a week.  Oiy!  Everything adds up to a busy week for Josie, but we feel like this is a good step for her and will hopefully give us the tools to keep moving in the direction of eating on her own and not with a feeding tube.

If you have seen Josie in the past 3 months or so, she is now sporting cute little pink glasses.  Anytime someone sees her in her glasses for the first time, they always comment to her "I love your glasses!".  She has heard it enough that she now points to her glasses and tells you that they are pink!  We are so thankful for her glasses.  She keeps them on with no problems and we think she keeps them on because she can just see better.  Her last eye appointment, which was just last week, showed only a slight change, but not enough to change her lenses.  This is good - means her glasses are doing what they are intended to do.

As for Josie's personality.  She is something.  Her vocabulary has ballooned, enough that she can tell us 4-5 word sentences.  Her favorite thing is to tattle on her sisters (although things happen while the girls are now at school, so I think she is just making stuff up!).  The latest story is this, "Reesie, she bonked me, bonked my head" and then proceeds to show you how her head got bonked.  The first time she said this, it was in the afternoon and Reese got a surprised look on her face and said, "that was this morning that I did that and it was an accident!".  There is some truth to what Josie is telling us.  Along with all the words she says, she also says a lot of jibber jabber.  She will have a conversation with anyone and everyone, about what...only she knows!

There is so much more that I could tell you about this little lady, but it is getting late and I am exhausted from running her around today. 

Thank you for lifting Josie up in prayer and being there with us - we are so thankful.

Blessings,

Marc and Darcia

2 Year Post Surgery Anniversary!

October 23, 2012

This past weekend was the 2 year anniversary of Josie's 2nd and almost fatal brain surgery.  We think back to that time in life and shutter, remembering all of the uncertainty and trauma of Josie's little life.  Fast forward to the present and we are immediately awe struck by the amazing life that Josie is now leading.  We are still in constant prayer for continued healing and development, but 2 years ago, we would never have guessed Josie would be doing what she's doing today. 

Here are a few glimpses, as well as updates on what has been happening with "Jo" as she so affectionately likes to call herself.

"Mirror, mirror on the wall, who's the fairest of them all?"  If you put Josie in front of a mirror, she will immediately point to herself and say, "Jo" and then will proceed to talk non-stop to herself.  Mirrors have been the key to a lot of Josie's developmental progress.  We have a little portable mirror that we keep in the living room, we have a mirror in the van that sits right in front of her and we use mirrors as incentive at her therapy sessions.  In fact she will get bored playing with one of us and search the room out until she can find her reflection - whether in a mirror or in something that reflects, such as the glass on our entertainment center.  Vanity, vanity... :)

Josie is starting to catch up to her 2 year old counterparts, at least in her vocabulary.  She can now say loads of words.  She has her sisters names figured out and will mimic most anything you ask her to say.  She understands what we are saying as well and will answer appropriately with "yes" or "no" or various other responses.  We let her watch a show called "Baby Signing Time" from time to time, and she has surprised us on several occasions that she can sign and say some of things that she has seen on this show.  She is very attentive to anything that will allow her to communicate.  She can make the sounds of at least 8-10 animals when we look through books.  Communicating and being with people are her favorite things!

As far as being mobile, Josie is making good progress in this area of development too.  We have taught her how to scoot around in a circle as well as she can move forward a little now too.  Marc came up with an idea that has helped Josie move a little faster in her scooting and it is in the form of the furniture movers called the "sliding robot".  They are these hexagon shaped plastic discs that have a foam top.  Typically you slip these under heavy furniture and it makes it easier to move the object.  For Josie, it is the same concept, we slip it under her bottom and then she can move her own body faster.   It was a joke at first until we realized that it actually helped her get around better!

She is becoming stronger in her standing and her walking during therapy and at home.  Currently in therapy they are working with her on using a basic walker and she seems to be adapting to it well.  She is still not stable enough to walk with it by herself, but each week we see improvements.  Her arm is also starting to become more active and she will initiate play with that hand and arm.  The fingers on her left hand are starting to show movement too.  Tonight she actually grasped my finger when I was playing with her. 

The last oncology report that we received at Josie's clinic visit proved to be encouraging.  Josie is still on a maintenance dose of chemo every month for 5 days and we were told that the last round of chemo will be in January.  Only 3 more to go and then she will be off chemo completely!  The oncologist also did not see any medical concerns at this time to schedule an MRI until after her last dose of chemo.  Our guess is that she will have her next MRI in February.  This will be the longest stretch of time that we have gone without any imaging of Josie's head - Praise God! 

Last month we had a follow-up appointment with her Neuro-surgeon and once again he was amazed by Josie and what she is doing.  He said he never imagined that we would have a 2 year follow-up from the surgery he thought she would not live through.  He is pleased with her progress, needless to say.

Josie has such a sweet spirit and has showed that she is a fighter.  She is truly a delight and a sweet reminder of God's plan for each of us. 

Many Blessings,

Marc & Darcia

Happy Birthday Josie - 2 years old!

July 11, 2012

Josie woke us up at 3 something this morning, crying and having a fit when daddy tried to hold her and not mom.  Her teeth are coming through in a hurry and it is making for a miserable 2 year old.  At about the same time two years ago, this little lady was making her first appearance into our lives.  Maybe that's why she was up in the night...just a reminder to us that "here she is" and life will never be the same. 

I can't look back on the day Josie was born without getting caught up in the emotions of what took place that day.  I remember vividly watching the resident doctor come in to give us a report about the ultrasound that they had done earlier in the day.  I was all smiles as he started telling us about the procedure and still remember the moment when my lips began to quiver in fear and disbelief as the prognosis unfolded.  My heart breaks each time I replay the resident doctors words to us, "Your daughter has a tumor in her brain, it is the size of a racquetball.  I'm really sorry." 

I cried so hard that I am sure they heard me far down the hallway.  I only stopped crying so loudly because I had this thought occur that I didn't want to scare all the other new moms that were delighting in their new babies.  Babies that didn't have a tumor or have an uncertain future so early in their life. 

Marc was so strong during this time, he was visibly shaken and emotional, but somehow had the strength to calm and soothe me despite our world turning upside down.  The first phone call we received after the news, was from our neighbor and that was the first time Marc had to verbalize to anyone what we had just heard about our baby girl.  The emotion was raw and horrible.  Somehow putting it into words made everything real.

There's a little glimpse into the first day of Josie's life.  We have had many days similar to this one, almost losing her several times.  I had longed for a third baby for so long and had cried out to God for a child, but I had no idea what was in store when we finally made the decision to have another child.  As I replay the different days of uncertainty, yes, my heart hurts and would love to have never had to go through those difficult times, but I do know this, our pain and suffering is not in vain.  God is using Josie and our family for His glory and that is enough for me.  Do I like the pain?  NO.  But I have learned so much about who God is and who I am in Him that I would not trade this experience.

Josie is a true blessing.  Do I see it that way every single day?  No.  We are still in the midst of the battle, even though we are not in the trenches like we were.  Being tired is our constant mode, in fact Marc said this morning that we haven't caught up yet from the night she was born.  

The past two years have been long and hard, but Josie makes everything worth it.  For those that have never met her, she has the sweetest personality.  Her smile is brilliant and will make you smile too.  She is a social butterfly, people make her happy.  If she can have center stage, she will take it and live it up.  She is a mommy's girl, but loves her daddy like crazy (just not in the middle of the night or early morning, she wants mom then).  Her sisters...they are her constant entertainment and she lights up whenever she sees them.  Josie's laugh is priceless, she can really belly laugh (which unfortunately makes her reflux a short time later).  She can blow kisses and loves to hug.  One of my friends says she feels like she is hugging an angel when she holds Jo.  We feel the same sometimes, like she is a little glimpse of heaven.

We love to tell our story, so please don't hesitate to ask us how things are going or what is new in our life or Josie's.  The best part...this is not just our story, this is God's story.

Blessings,

Marc & Darcia

Attached are 3 messages, 2-part series from Greg Laurie (pastor in California) and one from our pastor Louie Konopka.  Both messages are about handling crises and suffering.  They are great for anyone to listen to...enjoy and be encouraged.

Hope for those facing Crisis 1 - Greg Laurie
http://www.harvest.org/includes/mp3/player.php?media_type=radio&id=3634&mid=3634
Hope for those facing Crisis 2 - Greg Laurie
http://www.harvest.org/includes/mp3/player.php?media_type=radio&id=3635&mid=3635

When Suffering Sandblasts Us - Louie Konopka

http://www.youtube.com/watch?v=sFlehD7Wp5Q&feature=em-share_video_user

Jo's New Wheels!!

April 2012 - MRI results

April 18, 2012

Yesterday Josie had her MRI and by 10:00 today we had results!  I was out running errands when the call came, but by the upbeat message we received, I had a feeling things were looking good and I was right.

Josie's tumor is once again decreased in size, possibly up to 20% smaller, and according to the nurse that I talked to today, she said that both the oncologist and the neurosurgeon were pleased with this scan.  This was the first scan since Josie has been off of her IV chemo and we are extremely pleased that things continue to improve.  Our hearts are full today with the good news! 

Josie is developing in so many ways and it is exciting to see her start to catch on to things quicker and quicker.  Last night I was singing the "Itsy Bitsy spider" song to her and I always tickle her at the end of the song.  As soon as I started the song, she was anticipating the tickling at the end and would start to squirm and squeal by the time I got to the end.  Then she started mimicking me by wiggling her fingers like the spider as it is crawling - (I just wiggle my fingers like the crawling legs) and also mimicked me doing the motions for "out came the sun".  It was so fun to see her trying so hard to do the song with me and that she was having fun because she could participate.  LOVE IT!  We look forward to what God is going to do with this little lady!

Singing praises!
Marc & Darcia

April Update

April 11, 2012

It's Josie's monthly birthday today!  We celebrate, well at least say happy birthday every month to her on the 11th, because every month is a miraculous milestone in her journey.  She has come a long ways and is such a blessing in the midst of all the crazy things that have happened to her. 

We have several things that are worthy of an update and we are praising God for the change in direction that things are taking for Josie.  We finally feel like we are getting a bit of a break and can get our heads above water for more than just a quick breath. 

So here is what has been happening:

NO MORE HELMET!!!  Many of you have seen Josie or pictures of Josie with her pretty pink helmet.  The helmet was requested by her neurosurgeon to help shape her head.  The orthatist at Mary Free Bed was skeptical of the outcome right from the start, but at the last helmet check-up, Josie's head had changed shaped by 8-10mm.  At Josie's 6 month appointment with her neurosurgeon just a couple of weeks ago, he was fine with the change - although he didn't see that it did too much and said she did not have to wear the helmet any longer.  She is quite past the age of good shaping and there is no reason to keep her wearing it if it's not going to do much more for her.  At some point, if she starts to crawl or walk, she will need a different type of helmet for protection, but at this point, she is pretty stationary.  We are relieved, to say the least.  The thought of dealing with a helmet during the summer was oppressing - it already stunk just from wear during the winter months - can't imagine the smell after sweat and heat!  Now we get to see her beautiful hair all the time and she sure has a lot of it!   She has quite a bit of curl in her hair, we hope it is natural and not chemo curls (chemotherapy drugs can change hair and many times it is curly).  Either way, we love it and enjoy seeing it all the time.

The reflux problem seems to be coming to a halt.  We noticed it was not so bad about 5-6 weeks ago and on a spur of the moment thought, I (Darcia) decided to start running her formula through her stomach port instead of her intestine.  I was only going to do it for a few hours as a trial, but then she did so well with it that I left it all day and even in the night.  We were still putting meds into her intestine, but after a week of no reflux and the food running in her stomach, we now do everything through her stomach port.  This is a huge step and we are hoping to get to a place where we can do bolus feeds - which is where we give her an amount of food over a short span of time into her stomach.  Similar to how we eat breakfast, lunch and dinner, we would feed her only at certain times instead of running a pump around the clock.  We are also starting to try tastes of baby food in her mouth, at least when she lets us.  She is still very averse to anything in her mouth, but she is showing interest in what we eat and drink.  We need to decide now whether or not to start feeding therapy, we will be talking with her neurodevelopment doctor's office to help make that decision.  We are very hopeful that someday Josie will be able eat using her mouth.

Since our hospital stay for the strange infection in her port, in which her port was pulled, we have enjoyed having one less cord to deal with at home.  At the clinic they now have to poke her when they need to draw labs, but as of today, she only needs to go once a month for labs!  They have switched all of her IV meds to a medicine given at home or dropped some of them all together.  The clinic visit also only lasts about 2 hours instead of the whole day, much more manageable in all aspects. 

We are still doing 1 chemo drug at home through her feeding tube.  Today we start with a higher dose and will continue to up the dose each month until her maximum is reached.  We had been told originally that she would be done with this chemo drug in June or July, but now the plan has been changed to continue the drug for 6-9 more months. 

This coming Tuesday, April 17, Josie will have her next MRI.  These scans are now going to be done every 3 months until the doctors feel that the tumor is under control enough to go longer than that.  When we met with the neurosurgeon, he is always the realist, which is good in some ways and heart breaking in others, he said that even though the tumor appears to be shrinking, we have no idea how this tumor will act without the other chemo drugs.  It was just a bit of reality that we don't know Josie's true prognosis and have to keep that in mind even though she is starting to make such strides in her development. 

I asked him if he had seen any other tumors like this since Josie was born - he said he has seen 2 babies with brain tumors, but nothing like Josie's.  He is still amazed by her and how well she is doing, so much so, that he just shakes his head whenever he sees her - especially when chattering away to him in her own little language and flashing her sweet smile and princess wave.

His final words at the appointment - "we wait and see".  It's what we have to do with all of our kids...wait and see and most importantly, PRAY!  When I look at Josie some days, I feel like I "see" the prayers of so many people in everything she does, it usually brings me to my own knee's.  Thank you for praying and loving her and us so much...she is a living proof.