Brayden's Journey

Sunday, April 28, 2013

9th fill done & we reached our goals on 2 expanders tonight!!!

This week started off great, Brayden went to his pre-surgery doctor appointment and got cleared for sugery! He even met his new peditrician we want to take him and his baby brother too and Geoffrey and Brayden both really liked him.  Friday morning Brayden woke up with a cough,ugh.  The stress starts.  So off to the doctor he went.  Dr. said his lungs, ears and throat look ok.  He said as long as he is eating, playing like normal and all he has is a little cough, he's sure it's allergies.  So now Brayden is taking allergery medicine and that seems to be helping. 

For the past few weeks we have noticed Brayden's right expander was a little red on the bottom.  But it didn't look that bad, so we continued to fill it. On Friday I sent an email to Dr. Bauer and he said to stop filling that expander and to keep an eye on it.  Ugh, just what we didn't want to hear.  We are at 900 cc's on the right expander and our goal was 1000 cc's.  We were so close to reaching our goal.  But at the same time, we need to play it safe and don't want to risk loosing that skin we stretched.   Saturday morning when Brayden got up, I noticed it looked worse, it had a small dark spot in it.  Either it is a blood vessel or a hole starting.  So I put tegoderm which is like a band aide on that area to hold it in place.  When I emailed Dr. Bauer a picture of it, he said, "The last expansion just over stressed the blood supple to the flap.  As long as we keep the tegoderm in place it should be fine until surgery.  Try to keep his clothes from rubbing and no more filling that epander." So now we pray that that area doesn't get any worse over the next 8 days.

The area with the blood vessel or hole is at the bottom right expander

On a happy note, we reached our goals for 2 expanders tonight! Brayden cried during the fill again tonight, so we are happy next week is our last fill. I just hope he sleeps better tonight then he did last Sunday night.  Last Sunday night he cried from 8 pm till 2 am because he was so uncomfortable. Tonight so far he is doing a little better.
We are so happy the left side and leg expanders, we haven't had any problems with them this round.  Here we thought the leg expander would be our problem but it was the largest expander on the right. We got 85 cc's on the left expander and 40 cc's on the leg expander tonight. When Brayden was at the dr this week, they weighed him. His expanders weigh 5 lbs! Now wonder he's so uncomfortable at times.
We still have 1 fill left, we will do the final fill on Saturday night.  That way it gives the skin a few days to stretch before surgery.  Over all we are happy with the way this round is going, we just pray for good results during surgery.  If everything goes ok, this could be the last round of expanders for Brayden.  In 8 days we will find out! I pray it's the last round and we don't have to put him through this anymore.
Look at those huge bubbles! My brave boy! So proud of him

Left expander at 765 cc's and our goal was 750 cc's!

Leg expander at 530 cc's and our goal was 500 cc's!


Sunday, April 21, 2013

Fill #8

Tonight we did fill #8.  Can't believe we are getting so close to being done with this round. Brayden's expanders are getting big and uncomfortable for him.  Last Sunday night, he tossed and turned and cried all night and Monday night he cried for 3 hours off and on.  I told Dr. Bauers office about this and the only thing they said we could give him is Tylenol, Motrin or benadryl.  On a good note we are just about 2 weeks away from surgery and so far we are doing great with our numbers.  Just wish he wasn't so uncomfortable at night.

This week he got to see his best friend, his nevus buddy....Josh! These boys haven't seen each other since February because they both had surgery and had to heal up.  They were both excited to see each other and it's so fun to watch them play together.


The past few weeks, Brayden has put up a good fight during the fill and tonight he did much better.  He cried but not as much and he also didn't move around as much.  But right after the fill, he is so uncomfortable and keeps touching his expanders and can't seem to get comfortable.  He has been crying for 2 hours now, none stop.  I have a feeling this will be another night of no sleep for all of us.  Hate seeing him this way, nothing I can do to make him feel better. 
We had another great fill with our numbers this week! And if we have another good one next week, we should be meeting our goals! We still have 2 fills left! We got 110 cc's in the right, 85 cc's in the left and 70 cc's in the leg expander.


Right expander at 900 cc's and our goal is 1000 cc's



Left expander at 680 cc's and our goal is 750 cc's


Leg exander at 490 cc's and our goal is 500 cc's

Sunday, April 14, 2013

Fill #7 tonight

Tonight was fill #7, so happy we made it to another fill with no problems. Only 3 more fills to go and surgery is 3 weeks away! Erin and Brent came over tonight to help us with the fill and also Geoffrey's co-worked David wanted to see the process. 

This week, I asked other nevus mom's if they had any tips to keep Brayden calm during the fill and they said get him a new toy right before the fill.  So that's what I did, I got him a monster car and another tip they said that worked was to show him a video of another nevus child during the fill that is calm.  So Brayden's bff nevus buddy, Josh did a video for him.  I showed it to him yesterday and he was all excited to see Josh.  So I was thinking yes! This might actually work.  Tonight I showed the video to Brayden before his fill and he knew something was up and he said No Josh :(  and he didn't want to watch it.  I got the new toy out and he was excited to play with that, then it was time for the fill and he forgot about his new toy and just screamed and cried like the previous weeks. 

Finally after 10 minutes with 4 of us trying to hold him down,Geoffrey got the 1st needle in.  Then I started to feel something warm, yup Brayden pees on me.  Luckily I had a towel on my lap, so I didn't get too wet.  But I am sure deep down, Brayden thought that was pretty funny!

We got another good fill tonight.  We got 100 cc's on the right expander, 80 cc's on the left expander and 65 cc's on the leg.  If we keep it up, we will be going past our goal, which would be amazing!

Right expander at 790 cc's, goal is 1000 cc's, left expander at 595 goal is 750 cc's and leg is at 420 cc's and goal is 500 cc's


Left expander and leg expander


Right expander


Leg expander



Sunday, April 7, 2013

Fill #6 and 1 month till surgery!

Can't believe we are at fill # 6 already, but we are happy we are past the half way mark and doing great! Today marks 1 month till surgery, how I wish I could just wake up tomorrow and it could be May 7th.  I am ready for this round to be over with and I am ready to see our results.  If we keep things up the way they are going, we will reach our goals and get great results. 

Tonight 2 of Geoffrey's co-workers came over to help us with the fill, Karen and Kristin.  They wanted to see the process and have been supportive of Brayden from day one.  It's always good for people to come over to see the process and understand what Brayden goes through.

Geoffrey talked to Mim this week to see if we could give Brayden anything before we do his fill to calm him down and she said only thing would be tyneol.  Well we wanted something to relax him, he's not in pain, he's scared.  So tonight was another battle of trying to hold Brayden down.  He kept wanted to climb up on me and moving his legs around like crazy.  Finally we held his legs down to get the 1st needle in.  By the time Geoffrey stuck him with the 3rd needle, Brayden was so exhausted of crying and screaming that he didn't move around as much.

On a good note, we had another good fill tonight! We got 100 cc's on the right now at 690 cc's.  Left we got 75 cc's and now at 515 cc's and the leg we got 60 cc's now at 355 cc's.  We are very happy with our numbers right now.

Right expander at 690 cc's


Left expander at 515 cc's


Leg expander at 355 cc's


Bubbles looking great and getting so big now!!