Brayden's Journey

Sunday, March 31, 2013

Happy Easter! 5 fills done & 5 to go!!

Happy Easter everyone! I know Brayden sure enjoyed his Easter, he had a great time dying eggs and also hunting for them today.  We are now to our half way mark, what an exciting feeling! 5 fills done and 5 to go! Hope and pray that the next 5 weeks go as smoothly for us.  This past week, we did notice his leg expander was pinkish color.  I didn't know if this was normal or not.  So I sent a picture over to Dr. Bauer's office and they said the leg expander can look more vascular ( pink/red) because of the location and that we need to keep it well moisturized.  So that was good to hear that it is normal.

Tonight we did our fill at my grandparents since we were with them celebrating Easter.  It was a very stressful fill at first.  Soon as he seen Geoffrey bring out the supplies, he said "shoo daddy, owie." Breaks my heart that he knows what is coming next. Brayden was crying so much and moving around.  I had such a hard time holding him down and I have to hold him, while Geoffrey sticks him with the needle and if Brayden moves he will get stuck in the wrong spot.  It took over 10 minutes just to get the 1st needle in because he was so upset and scared.  Grandpa helped me hold him down and finally the needle went in and we continued on with the fill.  He did calm down some, but I think it was just because he was getting exhausted and sick of fighting us.  Other then Brayden moving around so much, we had a good fill and got great numbers.

Here is happy boy dying Easter eggs
Dying eggs on Friday night, cheese!


Getting all the supplies ready for tonight's fills, a lot of supplies are needed each week


Since we are at our half way, I have good news....we went pass our "goal" amount for the half way mark! So exciting! Now if we keep up the good work and no problems, we will be meeting our goals for surgery.  The Right expander is now at 590 cc's and our goal is 1000 cc's.  Left expander is now at 440 cc's an our goal is 750 cc's and the leg expander is at 295 cc's and our goal is 500 cc's. Look at how great and also big those bubbles are getting!


Right expander we got 90 cc's and now at 590 cc's


Left expander we got 75 cc's and now at 440 cc's


Leg expander we got 60 cc's and now at 295 cc's



Sunday, March 24, 2013

And were just about half way done, fill #4 done

Can't believe how fast the weeks go once you get back in to the weekly routine of fills.  Even though we haven't been doing much these days, the weeks still seem to go by fast.  We have been keeping Brayden away from most germs, we won't want to risk him getting sick and end up in the hospital like last round.  So we would rather play it safe, then be sorry.

Today I did take him to Bass Pro Shop to see Easter Bunny, he was all excited to see the big fishy in the store and also to see the the Easter Bunny.  All day he was telling me, "Momma Bunny hop hop." So I was thinking yes, we might actually get a picture of him happy this year with the bunny.  Nope, that did not happen.  Take a look below.

Tonight was fill #4 and luckily this time Brayden didn't cry when we put the numbing cream on.  But of course he started crying when it was fill time.  Erin and Brent came over tonight to help again and good thing they did.  Brayden kept wanting to move this leg while Geoffrey was trying to stick him with the needle.  I was holding him and Erin was helping Geoffrey with the supplies.  So Brent held down his leg.  Of course Brayden kept saying, "Shoo daddy, shoo." But at least we got it done with and had a great fill.  Other then Brayden crying, that is. 

 Happy boy after his fill enjoying a Popsicle

Got 100 cc's in the right, 75 cc's in the left and 50 cc's in the leg. Look at those bubbles....getting big already! So far, so good!

Right expander we got 100 cc's now at 500 cc's! Half way to our goal with 6 fills left! Woo hoo

Left expander we got 75 cc's, now at 365 cc's

Leg expander we got 50 cc's, now at 235 cc's

Happy boy ready to take a bath! He sure loved his bubble baths!

Sunday, March 17, 2013

3rd fil done for round #4

Tonight was fill #3 already.  So nice for things to be going smoothly and staying on track with our fills.  Just praying it continues this way until his May surgery.  Tonight Erin & Brent came over again to help us with the fill and they had a surprise for Brayden.  Some new red Nike non-lace shoes.  He loves them! They are too sweet to Brayden, he is one lucky boy!


Brayden took a late nap today, I thought that would help with him being in a good mood for the fill.  Nope didn't work, soon as he seen Geoffrey get out the supplies, he started crying and said daddy no.  During the whole time we were doing the fill, he was crying again.  Luckily it only last about 15 minutes and right after the fill, he's happy as can be again.

We had another good night with the fills  We got 100 cc's in the right expander, 70 cc's in the left and 50 cc's in the left expander. So far Brayden's clothes are still fitting him, I think next week, he will have to start wearing bigger shirts and shorts.  Another thing I noticed his diaper is getting too small with the leg expander, so I think I will go get him the next size up to see if that helps. We have 7 fills left, and so far we are on track with reaching our goals. 


Right expander we got 100 cc's in, now at 400 cc's....our goal is 1000 cc


Left expander we got 70 cc's in, now at 290 cc's and our goal is 750 cc's


Leg expander we got 50 cc's in, now at 185 cc's and our goal is 500 cc's



Sunday, March 10, 2013

Fill #2 for round 4

We had a pretty uneventful week, we are trying to keep Brayden away from a lot of social things while he has his expanders in.  Seems like too many kids and adults are sick right now and we want a smooth round of fills for Brayden and we don't want a repeat of last round, that ended up with emergency surgery.

Tonight we did fill #2.  Erin and Brent came over again this week to help us and we are so thankful they come help. Having the extra hands really help us while doing the fills. 

While Brayden let the numbing cream set in, he enjoyed some yummy popcorn and watched Rugrats movie. 


Brayden was not happy when he seen daddy get all the supplies out for the fill.  He kept saying daddy no.  When Geoffrey was doing the fill, Brayden cried the whole time, and he kept saying shoo daddy, shoo and owie.  But luckily it only takes 10 to 15 min to do the fills and then it's over with.  Right after the fill is done, Brayden is happy as can be and back to his normal self. 
Last week I emailed Dr. Bauer pictures of Brayden's expanders and he said Brayden is looking great and we can start filling like normal and don't have to be slow.  So that was good to hear and that's what we did this week.  I am happy we got another fill in, 2 down and 8 more to go!

We got 110 cc in the right expander now at 300 cc's.  60 cc in the left expander now at 220 cc's and 45 cc in the leg expander now at 135 cc's.


Right expander


Left expander


Leg expander



Sunday, March 3, 2013

First fill done for round #4

Tonight we did our first fill for round #4.  I have been waiting all week to do the fill, just wanted to make sure everything worked and we had no problems with the expander or the port.  Erin and Brent came over to help us with the fill.  Having an extra person is so nice, I hold Brayden and Geoffrey does the fill and Erin helped out with Geoffrey. 

Brayden was not happy as soon as he seen the medical supplies come out.  He is getting older now and knows that is coming up next.  We tried distracting him with fruit snacks, his pacifier, ipad and he didn't want anything.  Geoffrey was just cleaning the area before he stuck the needle in and Brayden was screaming and crying owie.  So I knew he was scared, which is hard to see your kid like that.  I think the 1st expander he filled Brayden could feel the needle go in because as soon as it went in Brayden screamed and stood up. The other 2 were much easier to get in and he didn't move when the needle went in.

We were told by Dr. Bauer to take it slow, so we did.  We got 30 cc's in the leg and 40 cc's in each back expander. We just want to take this round with caution and pray nothing happens.  Soon as Brayden was done, he said "All done." He had the biggest smile on his face.  So glad, he bounces back so fast after being so scared.

Right after fill, so happy and enjoying his sucker with his 3 pacifiers!

 Now it's time for some yummy ice cream and sprinkles, everything he went through tonight, he deserved it!
 Right expander we got 40 cc's in now at 190 cc's and left expander we got 40 cc's now at 160 cc's

 Geoffrey had to mark that port since it was so had to feel and see, so he drew at circle around it

 Leg expander we got 30 cc's and now at 90 cc's

 His stomach is healing up nicely, as it's healing it has more nevus left then I thought at first.  I am sure Dr. Bauer will touch that up in May
On a lighter note, the other day Geoffrey showed Brayden a picture of his expanders last round and he said, "Bubbles Daddy!  Pop, pop."  Too funny how he calls them bubbles and he probably thinks he can pop these bubbles just like he does in the bath.