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. 

Christmas update

December 9, 2011

Christmas is almost upon us and what a different Christmas this will be for us from last year.  We were in and out of the hospital at this time last year and Josie’s MRI in January had showed us that the particular chemo she was on was not working like they wanted it to on her tumor.  Now fast forward 10-11 months on a new chemo regiment and the tumor is still there, but responding to this chemo (as of August’s MRI).  Praise God for this encouragement. 

Josie will be having another MRI in January (date not scheduled yet) and we will see then what the tumor is doing.  Our prayer is that the tumor will be drastically reduced and we can have a better management plan of what needs to happen next.  At this point, her doctor has scheduled us for 6 more months of chemo.

We haven’t posted in quite a long time and you can assume in these quiet times that things with Josie are going fairly smoothly.  But…since we haven’t posted in so long, here are some highlights of what has been going on in her life and ours.

Many have asked about Josie’s reflux issues and many have told me that they are praying specifically for this problem.  Thank you!  Reflux continues to be the outward sign of the many complicated issues going on inside Josie’s body.  We have been told that her reflux may be caused by neurological disconnects and that it may not respond to typical treatments.  We have also found that reflux is cyclical, which means at certain (or uncertain) times Josie will have a break from her reflux and then it will start again.  We experienced one of these breaks for about 3-4 weeks in October and November.  We thought that a new med we started her on in October was the answer, but now realize that it was coincidental to the end of a cycle.  After her reflux started up again in mid-November, the doctors had us up her dose of this new med.  Now we know the medicine does work and has minimized her reflux, although it has not stopped it. 

The other significant aspect to this new medicine is that the med is typically prescribed to help low tone in muscles.  In Josie’s case, the med was not prescribed for that purpose, but we have seen a huge improvement in the movement of Josie’s left arm since starting the medication.  We count this as a real blessing and we think Josie does too!  She is so pleased with herself when she gets her left arm up and can clap or pat it with her right hand.  We have started Occupational Therapy for the left arm and our hope is that we will see some real progress in movement and strength. 

The newest development is in her mobility.  She has learned the fine art of rolling over – from her tummy to her back.  At times she needs a little assistance, but is starting to do it all on her own.  The pride in her eyes is priceless when she finally gets herself over and realizes it was her own strength that rolled her over.  She also wants to get moving in the worst way.  We have been working with her by putting her on her hands and knees.  As soon as we put her in this position, she starts rocking herself as if she would like to crawl.  Her left side is weak, so we are supporting her the whole time she is in this position, but she is getting stronger and hopefully she will be able to support herself soon. 

At Physical Therapy, they are working on getting her body moving and they are doing that by making her walk on the tread mill!  When the therapist told me she was going to put her on the tread mill, I was a bit skeptical, but they have this cool harness contraption that Josie kind of hangs from this while the therapist helps her move her feet.  She really likes this exercise and is starting to put a little effort of her own into moving her right foot, her left is going to need more support and help.   

If you have seen pictures of Josie lately or seen her in person, she is now sporting a pretty pink helmet with lots of butterflies on it.  Josie’s neuro-surgeon prescribed a helmet for her to wear to help shape her head as well as keeps her soft spot safe.  When we went to Mary Free Bed to have her scanned to get a helmet made, the orthotist was a bit uncertain of how to do a helmet for her because he has never made one for a child that did not have part of their skull.  He was also not sure that a helmet would even mold her head, since most babies are between 3-8 months for the best possible shaping time and Josie was just getting fit for one at 15 months.  We just had her first size check and her head has moved 3mm in just 2 months time!  It’s working!

We were worried that Josie would absolutely hate her helmet, since she really dislikes hats on her head.  As I was on my way in to the first trying on of the helmet, I realized that I had not given this fear/worry over to God and right then and there gave it to Him.  The orthotist brought in the helmet and from the very first time he put it on her, Josie LOVED it!  As soon as it was strapped on, she took her little fist and banged on it and then broke out into huge smiles!  Answered prayer!!!  She wears the helmet 23 hours a day and she has not cried a bit about it. 

As for teaching Jo to eat, we moved our therapy to Mary Free Bed’s feeding therapy program.  The therapy started in September, with therapy twice a week.  This past week Josie was discharged from therapy.  Josie hasn’t learned to eat yet, but we have learned a lot along the way of how to help get past the aversions of touch to her mouth.  Food is going to come down the way for her.  Since she gets chemo every two weeks, we were going one step forward and then one step backwards because her stomach would get rocked from the chemo and we’d have to start the process over.  We feel we have been given the right tools to continue on without therapy and can maintain the things we have learned.  Plus…that free’s up our schedule quite a bit, which is refreshing for a change.

Josie is developing in such fun ways right now.  We had mentioned previously in a post that she was starting to say “ma-ma”.  Then within a day or two of that post, she regressed and wouldn’t say it anymore.  So much for a proud “ma-ma”!  Now in the past few weeks, she has started to say it again and this time we can tell she understands that she is communicating with us. 

Her personality is really coming out as well and we have found that this kiddo has quite the sense of humor and is a bit mischievous!  She will grab a toy on her high chair tray and wave it around while we watch her and then as soon as we aren’t paying attention anymore, she throws it overboard and then smiles and laughs at the “trick” she just played on us.   I remember our other girls going through this stage, but for Josie it is a real milestone for interacting with us. 

Time to bring things to a close, I could go on and on about the many aspects of this sweet baby.   We are so thankful for the progress she has made and the loving nature that she has throughout all of the things she is going through. 

We are looking forward to a wonderful Christmas of celebrating another baby – the most important baby, Jesus.  We couldn’t be where we are without Him.  We are blessed!

Merry Christmas,

Marc & Darcia

Specialists...

September 26,  2011

September is going by so fast!  School started and we have seen almost every specialist that Josie has during this month.  Makes for very busy days and weeks.

Josie is doing well and seems to be turning some developmental milestones, of which we are so extremely excited to see.  She has started really sitting up on her own - for long periods of time.  Once she gets leaning to the left though, she can't catch herself due to the weakness in her left arm.  So even though she is sitting, we are still right next to her the whole time, she doesn't need any bumps and bruises from falling over.  As for her speech, she has started to say "mama"...not necessarily related to her actual mama. :)  She uses the "mama" sound for when she is happy and babbling as well as when she is hopping mad.  We've started to hear a few other sounds, but that is the main one right now, I must say, it is precious to hear!  As for other things she is doing, she is starting to love the simple baby games, such as peek-a-boo and leaning backwards because she wants to go upside down and she is learning that she can make fun sounds by pounding her hand and foot on things.  These are all great things to see her start doing and does our hearts good to see her learning and developing.

The reflux issue is back with a vengeance.  We had quite some time where the reflux was hardly happening - we weren't even carrying burp rags around with us anymore.  Then one week it started up again - nothing changed in her care, but it came back and has been non-stop.  Mornings are the worst and tend to be more painful and traumatic to Josie with lots of crying.  This last week has been a bit worse because she also got a cold and the drainage made her reflux more than usual, plus we were having to wipe her nose too.

Today Josie went in for an Upper-GI to see if something was triggering her reflux.  They do this under fluoroscopy and inject barium into her stomach through her g/j tube.  The procedure was going along fine, aside from Josie not caring for being strapped to a board and being turned almost upside down, but then they decided to add a little more barium to her stomach for better imaging.  It was like Josie was a volcano and barium came spewing out of her.  It was everywhere!  Needless to say, they got a good image of what happens when she refluxes!   Unfortunately, the PA that was doing the procedure said he didn't see anything out of the ordinary and that perhaps it is neurological.  Back to square one.

Last week we met with Josie's Neuro-surgeon that replaced her bone flap in her skull.  This was a follow-up visit to the surgery that was done in June, to see if her body was accepting the bone and healing.  As soon as he felt her head, he shook his head and said that the bone didn't take, her body was absorbing it.  We were definitely bummed, but thankfully God had already prepared us for this news.  Several weeks ago both Marc and I had started feeling soft spots on Josie's head and as the weeks continued the spots were getting softer.  We had a feeling that the bone hadn't taken and already had time to process this information - the doctor just confirmed it for us.  Aside from this news, the doctor was extremely pleased with Josie's development as well as he is in agreement with her oncologist that the chemo is working. 

What happens next?  Well, Josie now has the same soft spot, so we are just careful with her on that side and the doctor has ordered a helmet to be made for her.  Not so much for protection, but more as a shaping helmet.  Time will tell if it will mold her little noggin.

This week was her ophthalmologist appointment.  We have been worried about Josie's left eye for the last couple of months because it can tend to wander.  The girls have dubbed it "Josie's funky eye" thing.  Thankfully the eye doctor was very pleased with Josie's eyes and the progress she has made since the last time he saw her.  She does have some wondering in her left eye, but hopefully patching her eye for an hour or so each day should help strengthen her eyes.   She also has some peripheral damage, but at this point, he is just going to put it on the "watch and wait" list in her chart.  Her sight seems to be appropriate in all the other areas.  We are thankful for sure, now we just have to get her to leave her patch alone.

Over all, we are so glad to be home and getting into a routine of "normal" life.  We are praying that we will not have any unplanned hospital stays this year.  After this month, hopefully life will slow down - at least as far as appointments go.  

Josie is a true gift and we are blessed by her daily.  Thank you to all who are continuing to pray for us, we are still in need of it and know that God is hearing these prayers for us. 

Blessings,

Marc & Darcia