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. 

New Doctor

9/2/10 New Doctor

Amazing - it is September - in some ways life has zoomed by and in other ways, it feels like we have had the longest summer ever. Somehow things don't balance out though!

It has been quite some time since we last updated everyone on Josie and I have promised to write today - despite a cranky baby this morning. :)

Just a clarification and a little bit of surprise, the rash on her head ended up not being what I thought it was in the last posting. The doctor called (a week after I should have received the results) and said "by the way, the rash actually was a staff infection - good thing we put her on the antibiotics." The only problem - we hadn't started her on the antibiotics because we had made the decision to not give her the medicine if she didn't really need it and we assumed we would hear back from the doctors office as soon as the results were back - not a week later. I talked to them about that "slip" and they were extremely apologetic and were going to look into the situation. So, we did end up giving her the antibiotics and her infection has now cleared up and gone away.

The last few weeks since the MRI posting have been relatively quiet, mostly doctor appointments and a couple of unexpected feeding tube checks. The first tube check happened because Josie got a hold of her tube and pulled it out about an inch and a half and the second tube check happened because her feet got stuck on the medicine port portion of her tube and pulled it out again about the same amount, so with that one we weren't worried about taking her in for a check, until we noticed medicine in her spit-up the next morning, so in we went AGAIN. You know it's bad when the radiology tech knows you by name and laughs when he sees you come through the door. Each time she was checked, the tube was still placed in the intestine, not as far as it had been initially, but doing what it is supposed to be doing. I always feel like the over-anxious parent after these visits, but the radiologist tech assures me each time that I did the right thing by bringing her in.

Needless to say, the feeding tube has been the most frustrating thing with Josie. Not just the fact that it can easily be pulled out and that she has tape plastered to her face all the time, but it is an inconvenience to carry the pack around too. The main frustration though is that Josie has really bad reflux which could possibly be a side effect of the tube, although we have been told by several doctors and specialist that it probably isn't. A lot of babies have reflux, but in Josie's case, her feeding tube bypasses her stomach and goes right into her intestine, so she has nothing but saliva and stomach acid that comes out when she refluxes. (hopefully that is not too detailed for some of you)

We had been trying her on a pacifier and the bottle throughout the day in order to get her used to sucking. She started sucking really well on the pacifier (never on the bottle), but inevitably about 10 minutes later, she would gag and reflux because she swallowed to much spit while sucking on the pacifier. We still thought it was progress, but then last weekend, she started gagging almost immediately when we would put the pacifier in her mouth. We have been told by the doctor to stop trying with the pacifier and bottle for the time being so that she does not develop an even worse aversion to them and until the reflux issue is solved. As the saying goes, "1 step forward, 2 steps back".

We met with a new doctor yesterday - she is a neuro-development doctor. One of her specialties is working with the feeding process - she will now be the doctor heading up the management and direction of the feeding tube as well as her reflux/gagging issues. YEAH! We are so thankful - this has been one of those things that had been dropped as to who would manage her feeding issues, so a real answer to our prayers. This doctor will also follow all of the other developmental areas too for Josie - another praise!

The doctor is quite concerned about the reflux issue and wants to resolve that before we do anything else. She has ordered an ultrasound of Josie's stomach and esophagus to start the process for determining why she has it so bad. I am waiting for the call today to schedule a time for the ultrasound. Once we find out what needs to happen and start the process (whatever it may be), then we can start up on the sucking and swallowing process. The doctor also started us on a new formula for Josie that is partially broken down already since she is missing that digestion process by her tube going directly to her intestine. This change could also help with her reflux – not sure how that happens, but the doctor said it could calm it down. I must say – formula is already not a pleasant thing to smell, but this new formula smells disgusting – don’t know how babies handle that stuff! If it does the trick though, we are all for it!

Finally, some basic stats of what Josie is doing and how she is growing – she is now officially a 10 pounder and filling out beautifully – little rolls and everything. She is now smiling and cooing quite often. She has a beautiful smile (biased I’m sure!). As far as her development, there has been some concern that her left side might be affected since her tumor was on her right side and actually replaced some of her brain on that side, but so far she is moving all limbs equally and both eyes track together all the time. In fact we were very excited the other day because she grabbed one of the toy butterflies on her bouncy seat with her left hand and she was holding on pretty tightly. It was a great assurance that the left arm/hand is working just as well as the right. She truly is a miracle baby!

We continue to be on our knees for our little Josie and know that God has great things for her. She has already taught us so much about ourselves and about the great God that we serve in the past 8 weeks. We could not and would not be in the place that we are without trust in the almighty One as well as the through the great support of people that He has brought alongside us.

I have already seen such miracles in Josie and look forward to seeing more and more!

Blessings,
Marc & Darcia

MRI scheduled

8/15/10 MRI

We have had a pretty "normal" week of doctor appointments and life at home. We had one unexpected trip to the Pediatric clinic on Thursday (which she had an appointment for Friday already and we went to that one too!). Josie broke out in a rash all over her little head the day after she got her new feeding tube. We watched it and let the doctor office know about it early in the week, but then the rash started getting worse and sores started popping up under the tape holding her feeding tube. The tape was right by her eyes, so her eyes also got infected. On Wednesday afternoon we called again and they wanted us to bring her right in Thursday morning. They tested for bacterial and viral infections and so far nothing has been confirmed about what the rash is on her head. After 2 baths, the spots have somewhat cleared up and dried, but her little head looks pretty yucky.

Tomorrow (Monday, August 16) we take Josie in for an MRI. This will be her 1 month image following her brain surgery. This will be a long appointment - approximately 1pm-5pm. Josie will be put under with general anesthesia because she has to hold absolutely still for the scan.

Keep us in prayer - we will meet with her neuro-surgeon on Tuesday to go over the results.

We have been so well supported by everyone - thank you for all the help, we have needed it and appreciate it more than you'll ever know.

Blessings,
Darcia & Marc

Doctor Appointments...

8/7/10 Doctor Apt Updates

We have been home with Josie now for a little over a week. We have had some really good days and some not so good days. Thankfully we have had several friends and family that have helped out this week in so many ways - watching the girls, meals and lots of support.

Doctor appointments started on Tuesday of this week - starting with drawing labs for the following day’s appointments. Wednesday was Josie's Neurology appointment - all went well and they are going to keep Josie on the same seizure meds for now. One of the meds elevates her liver levels, but they are not too concerned at this point - they don't want to mess with changing her meds until she has had it in her system a while longer. They are keeping a close eye on this liver level, which puts our minds at ease a bit.

On Thursday, it was supposed to be a day that I didn't need to go out and about with Josie and I was hoping to get a little needed rest while some friends took the girls for the afternoon. Instead, Josie has started this gagging/throwing up thing that is very disconcerting to me, so I called the Pediatrician and they wanted me to come in to the office with her. That visit ended with me taking Josie to Radiology to get an X-ray of her belly to make sure her feeding tube was still in the right place. After 2-3 hours later, the result came back that it was positioned correctly and I went home with no answer to her throwing up problem.

Friday...I should have known it was going to be one of those days when right from the start, our dog knocked my full cup of coffee off the coffee table. (anyone want a 9 year old dog???)

Josie's first appointment was at the Peds Clinic for our "first" follow-upvisit after her hospital stay. This apppointment was very good and we changed a medication for reflux (possibly the throwing up issue) and then after much screaming from Josie, the nurses got her feeding tube retaped. Unfortunately, because the appointment went much longer than anticipated, we were almost an hour late for Josie's speech therapy appointment, so they told me that we would have to reschedule for next week. I was devastated - I was really looking forward to this appointment and then to not get to meet with the therapist, pretty much shut me down emotionally. I struggled incredibly with this and felt crushed, but there was nothing I could do about it nor did I have any control over being late.

On the way home, I cried and felt drained, little did I know that this was only the beginning of a draining day. As I got home, I opened the van door and started to get Josie's carseat out - what I didn't realize is that the feeding tube cord was stuck on the opposite side of the van seat. The action of lifting the carseat out and the cord catching was enough to rip poor Josie's feeding tube out. I immediately fell apart. Thankfully I got a hold of Marc and gave him the number to call and he took it from there. Marc came home so that he and I could take Josie back to the hospital (this time to the ER) for her feeding tube to be replaced. After talking to the PA that inserted the new tube, he said that the process of the tube coming out didn't hurt her and that things like that just happen. The thing that probably hurt more was the tape ripping off of her face (poor thing!).

Josie had a very fussy rest of the day and slept a lot, which means she didn't sleep very well in the night. *yawn* I think she was skidish this morning about being picked up or handled since yesterday was so traumatic, but she finally settled down and had a good 2 hour wake time this morning and is napping right now.

Keep praying for her Josie and for us - we are feeling somewhat weary - tired from not sleeping well and also feeling somewhat emotionally drained. We really need to get Josie eating (anyone have tips or tricks) so that the feeding tube can come out for good.

well...this has been a long post and lots of information, but we wanted to let you know where we are at with Josie.

We are just waiting on time for what comes next - we have realized that we can only take it one day at a time and keep walking in faith - which means sometimes we take steps without knowing what is coming next.

Blessings -
Marc & Darcia