Next Surgery Date

September 30, 2010  Next Surgery

We received the call yesterday for Josie’s surgery date.  She will be going in to the hospital on October 19 for a procedure called embolization.  This procedure will be done to block the veins that are running to the tumor so that when they do the operation the hope is that she will not bleed like she did during the first surgery.  The actual surgery will take place the following day on October 20^th.  The same doctor will be performing the surgery and we are more than confident in his abilities.

We are now in the process of figuring out how everything will work during that timeframe for the rest of the family since the girls are both now in school.  My mom is coming to help some of the time and we will work out the rest of the logistics as we know more. 

We continue to covet your prayers…we know God is at work in this beautiful little lady!

Blessings,

Darcia & Marc

Tumor is growing...

September 24, 2010  growing…

It is with a heavy heart that I post an update for Josie.  This past Thursday, Josie had another MRI to check on the remaining portion of her tumor.  Unfortunately, her doctor told us that it is growing once again.  L  We were quite shocked to say the least.  My thoughts going into this check-up were that the tumor was either the same as the last time or my hope was that it would be smaller and going away.  I quickly remembered the nauseas feeling I had when we were first told that she had a brain tumor right after her birth, because I was once again feeling nauseated.  We were shown the images of her tumor and the doctor compared the before pictures and the after pictures.  I couldn’t believe what he was saying, yet I knew he was telling us the truth. 

Because the tumor is growing, Josie will be going in for her 3^rd brain surgery (her biopsy was an actual surgery) in 2-3 weeks from this post.  A date has not been set as our doctor wants to have the other pediatric brain surgeon in Josie’s surgery with him and that doctor is not back until next week to make the appointment. 

The doctor took Josie’s case to the “Tumor Board”, which is held every Friday.  This Tumor Board is made up of 30-40 doctors/PA’s and other specialists that make decisions on tough cases within the hospital.  They all agreed that this is the route that needs to be taken for Josie’s tumor. 

As for our other concern, her feeding tube, it has now become a lesser inconvenience in light of what she is up against.  She is still having reflux multiple times a day (went through 4 outfits today) and sometimes it really hurts her and other times, we don’t even realize she has something coming out of her mouth.  We did have an ultrasound of her stomach and everything is in working order according to that screening.  The doctor (neurodevelopment) has started Josie on a new medicine, but it doesn’t seem to be helping…yet.  

The one thing that we must do is to keep Josie healthy.  She has to be “sick free” in order to have the surgery.  We will now need to keep Josie home as much as possible.  This will be difficult, especially with kids in school now and germs are everywhere.  We have noticed that she is pulling at one ear and that is a concern as to whether or not she has an ear infection.  I will be calling her pediatrician on Monday if it continues. 

Tonight I am struggling with letting my baby go through this whole ordeal again, yet knowing that she must undergo it for healing to take place.  There is that fear of the unknown and what will happen during this surgery.  As I was praying over her tonight while I rocked her to sleep, I had to fight the urge to grasp at the situation and try and control it (which I can’t very well do anyway), or open my hands and give it to God.  I think a few of my fingers were pretty reluctant to let go.  My heart is still sad and grieving, but my heart and Josie are in a safer place – God’s hand.

Please pray with us as this rollercoaster starts up all over again.

Blessings,

Marc & Darcia

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