Brayden's Journey

Sunday, June 29, 2014

Fill #10

This week we have been noticing his hole in the scar tissue is getting deeper and bigger.  We thought it would be  good idea to double check with Dr. Bauer before we did our fill tonight.  We were concerned about the back expander and if that hole keeps opening up, it could affect that expander.  The amazing Dr. Bauer responded to us right away on a Sunday and he said I would probably hold on further expansion of the back.  He also says that even though it looks like it will break through, he doesn't think that is going to happen because there is a lot of tissue between the wound and expander. 

So we were right on not filling that back expander.  I would rather play it safe then be sorry and we are 11 days away now from surgery.  Tonight when we put the lidocaine on Brayden started screaming and said he wanted to go up stairs to his room by himself and go to bed.  Poor guy is trying everything to get out of doing these fills.  Luckily for him, we only had to do 2 tonight.  As we were doing his fill he said, "Daddy don't fill too much your going to pop my bubble."

We just pray his hole in the scar tissue doesn't create any problems before surgery.  Next week Dr. Bauer will be at the Nevus conference in Texas.  Nevus Outreach has a conference every other year during the 4th of July.  We are hoping to make it next time, that way Brayden will be older and he will get more out of it and meeting lots of people just like him.  I know we are truly greatful for all the nevus friends we already have in our lives.  Having support from people that can relate, means the world to us. 

Tonight we got 40 cc's in the stomach and now at 535 cc's and our goal was 500.  And out leg expander we got 30 cc's and now at 410 cc's and our goal was 350 cc's.  We are really happy we are past our goal on 2 expanders.  The back is at 355 cc's and our goal was 500.  I think since we have stretched that area so much in the past, that is all it can handle. 

We will try to do 1 more fill next Sunday, as long as this week goes as planned and creates no more problems for Brayden.

Hole is getting larger since last week and that's why we couldn't fill the back expander tonight

Sunday, June 22, 2014

Fill #9

Tonight was fill #9.  So happy we are nearing the end of this round.  Brayden is having a harder time with the fills as the weeks go on.  Now he came up with the idea to get out of during the fill, he has to go potty.  And what do you know, he sits on the potty and never goes.  He was shaking and screaming so much tonight.  So hard to see him like this.  I just pray this is our last round of expanders for him.  So thankful we started when he was 7 months old.

Brayden needs to take it easy these last few weeks.  His problem area on the scar tissue is getting worse.  It makes me nervous the way it is looking.  But Dr. Bauer did tell us this week, to not worry since it's the scar tissue and to keep it really moist with aquaphor.  Easier said then done . 

Tonight we got 40 cc's in the stomach expander and now at 495 cc's.  So close to our goal which is 500 cc's.  We got 30 cc's in the back and now at 355 cc's and our goal is 500 cc's.  On the left thigh we got 30 cc's and at 380 cc's and our goal was 350 cc's. 

I have noticed the more these expanders weigh, the more it is cause Brayden's feet to turn in.  I know once this added weight from the expanders is out, his feet will go back to normal.  Just amazing the bigger these bubbles get, Brayden just runs around like he doesn't even have them in. 

 The scar tissue getting bigger

Sunday, June 15, 2014

Fill #8

Can't believe we are at fill #8 tonight and only 3 to go if everything goes as planned.  We are less then a month away to surgery #10.  His bubbles are getting so big and having a hard time finding clothes and pj's to fit him.  Luckily we don't have too much longer.  Last night I was giving Brayden a bath and he looks down at his expander in his stomach and he says. " Mommy, why is my tummy getting so big? Am I making a baby inside my tummy."  Ha the things that they think of at that age.

Brayden still cried whole time during his fill tonight and even tried to stall a few times saying he had to go potty.  Poor boy, just wanted to be done and go lay down on the couch.  He was happy once we put his car bandaids on and dressed in his pjs. 

Tonight we hit goal on 1 of our expanders! On our left thigh we got 40 cc's in and now at 350 cc's which is our goal.  On the stomach we got 40 cc's and now at 455 cc's and our goal is 500.  On the left back we got 30 cc's and now at 325 and our goal is 500 cc's.  I know the reason why our numbers are so low on the back is because that area has been stretched 4 times already and not sure how much more it can take, so we are taking that expander easy.

His area between the 2 expanders on the scar tissue is still holding up.  Praying that it continues to hold up for the next 3 weeks and we can go to surgery on July 10th as planned.

Monday, June 9, 2014

Fill #7

Last night we did fill #7, can't believe tomorrow we are 1 month away from surgery #10.  This round has surprisingly gone by fast.  We have been worried about Brayden's scar tissue on the left hand side between his 2 expanders.  The skin in thinning out and starting to bleed.  We have emailed Dr. Bauer a few times about it and he told us not to worry and this is common.  We are suppose to keep it moist with aquaphor.   So we just pray it doesn't get worse and we can have surgery like planned. 

Brayden was exhausted last night when we did his fill and not happy.  He had too much fun at his baby brother's 1st birthday party and he was exhausted.  Luckily the fill didn't take too long and he was ready for bed. 

We got 40 cc's in the stomach and now at 415 cc's and our goal is 500 cc's with 4 fills left. We got 30 cc's in the left back and now at 295 cc's and our goal is 500 cc's.  In the left thigh we got 40 cc's and now at 310 cc's and our goal is 350 cc's.  We are doing pretty good with our numbers and getting closer to our goal. 

Sunday, June 1, 2014

Fill #6, half way done!

Tonight we made it to the half way point.  Brayden's bubbles are already getting so big and we still have 6 more weeks before surgery.  We just pray the last half goes as smooth as the first half.  Brayden keeps asking us how big will my bubbles get?! Really big Brayden!

This week we moved into our new house and Brayden is loving it! He loves to be outside and running around and playing.  Living in Iowa is better for Brayden and his nevus skin compared to Arizona and the hot hot weather.  We just make sure Brayden wears sunscreen when he goes outside and now he is finally starting to wear hats and sunglasses, which is good!

Tonight we got 35 cc's in the stomach and now at 375 cc's and 30 cc's in the left back and now at 265 cc's and 35 cc's in the left thigh and now at 270 cc's.  We are really happy with our numbers being at the half way point. 

 We are concerned about the redness on the scar tissue between the 2 expanders, we hope it doesn't cause any problems the next 6 weeks.