Brayden's Journey

Tuesday, May 27, 2014

Fill #5

Sunday night we did fill #5, we are just about half way done with his fills.  We sent pictures to Dr. Bauer last week for the first time and he said he is looking great! Always nice to hear that. 

We got 30 cc's in his stomach and we are now at 340 cc's, which is awesome! We got 25 cc's on the left back and now at 235 cc's and we got 35 cc's on the left thigh and now 235 cc's. 

Wednesday, May 21, 2014

4th fill

Tonight we did Brayden's 4th fill, we couldn't do his weekly fill on Sunday since Geoffrey was in Chicago for school.  On Sunday Brayden did point to his supplies and ask if we were doing that today.  I told him no, we had to wait till daddy got home from Chicago. Brayden is getting use to his bubbles, he even likes to show his friends.  He will lift up his shirt and tell them to look at his bubbles and he is all proud how big they are getting.  This is another reason I am so thankful we started this process when he was so young.

Brayden is very lucky to have so many nevus buddies and he always asks to go on a BIG airplane back to Arizona, to visit his nevus BFF Joshua.  Well last week I booked flights to go back to Arizona so he could reunite with his buddy.  He asked me when he sees Joshua if they would both have bubbles and I told him, No you will both be bubble free.  Then he asked me, Mom will you please not pop my bubbles.  So sweet how kids think.   

Brayden started getting worked up tonight when we got his supplies out but he did much better this week during the fill.  He asked how many bubbles we had to fill and I told him 3, so he was happy when we were down to 2 and then 1.  Now that he is learning his numbers, he understands more what is going on.

We had a good fill tonight, we got 50 cc's in the stomach and were at 310 cc's out of 500 for our goal.  35 cc's on the left back and were at 210 cc's out of 500 for our goal.  Left thigh we got 45 cc's and were at 200 cc's and 350 cc's is our goal.  We are doing very well with our fills and it's only our 4th one.  Praying this round continues to go as planned and no bumps in the road.  Dr. Bauer did put him on Bactrim for the reminder of the expanders. 

We took Brayden to the doctor today and he only has 1 tube in.  He has been complaining about his ears lately, so we will be taking him to an ENT doctor soon.  We will also be taking him to a pediatric dermatologist soon for a check up.  That is one bad thing about moving, finding good doctors that understand what is going on with your child.

Love my brave bubble boy!

Sunday, May 11, 2014

3rd fill done

Sunday fill day once again.  Earlier this week Brayden got sick with a cough, so Dr. Bauer wanted to play it safe and put him on Bactrim which is an antibiotic.  He will be kept on this till his expanders are out.  We also got 10 bags of saline in the mail from Stephanie Burmeister another nevus mom.  So thankful to have her helping us out.

Before the fill Uncle Brandon asked Brayden if he wanted his stomach to get big like his and Brayden didn't say much.  But during the middle of his fill when he was crying he said, " I don't want a big stomach like Uncle Brandon." It was pretty funny.  But once again he was crying pretty much during the fill and telling Geoffrey to stop hurting him.  So hard to hear him saying that. 

Brayden had a good day today, he got to go to his favorite store, Target.  He got to pick out a toy and right after his fill he was ready to play with it.  Think he misses all our Target trips when we use to live in Arizona.

We did pretty good on our fill tonight with our numbers.  We got 45 cc's in the stomach and now at 260 cc's.  We are over the half way mark on that expander and we still have 8 fills left.  On the left back we got 30 cc's and now at 175 cc's and on left thigh we got 45 cc's now at 155 cc's. 

Before the fill tonight with baby brother Bentley

Sunday, May 4, 2014

2nd fill done

Earlier this week we didn't know if we would be doing his second fill today.  Not because he is sick, which does happen.  We were told by his nurses Mim and Susan that there is a nationwide shortage of saline.  We were waiting for the arrival of saline all week.  Friday I began calling around to see if we could get some. Mim told me that Dr. Bauer was stressing because last month he put in expanders on 30 different patients. So Brayden isn't the only one needing saline right now for the weekly fills.

Finally at 5:00 Friday my local hospital came through with 2 bags of saline for us and Stephanie Burmeister an amazing nevus mom is mailing me 10 bags of saline this week.  So thankful for other nevus moms looking out for us.  Now we are all set with saline and one less stress. 

Soon as Brayden seen the supplies he asked, "Are those for me mom?" He knows what is going on that's for sure.  He cried the whole time while we were doing the fill again this week.  When we were done with the fill he asked if his bubbles are really big now and he also asked if his buddy Joshua also had big bubbles like him.  I am so thankful he knows he's not alone having bubbles.  Having other nevus families as support these past 3 years have been amazing. 

When we told him it was time for the fill, poor Brayden :(
Tonight we got 45 cc's in the stomach and now at 215 cc's out of 500 for our goal.  Which we are very excited about since this is our 2nd fill

In the left back we got 30 cc's and now at 145 cc's out of 500 for our goal. In the left thigh we got 40 cc's and now at 110 cc's and 350 is our goal