Brayden's Journey

Sunday, March 25, 2012

7th fill done...4 more fills to go

Tonight we did fill # 7....hard to believe that 7 weeks have gone by since his surgery in Chicago. Seems like each week is going by quickly and before we know it, it's Sunday fill day again.  Tonight our friend Katie came over again to help us with the fill, always makes it easier when we have that 3rd person to help us.  Brayden did feel the needle when Geoffrey stuck in the right side, but once the needle was in, we gave him a sucker and he was happy as can be and he for got about his pain already.  Amazes me how strong he is.

For the right side we got 80 cc we are at 695 cc....we will for sure hit our goal of 750 cc...on the right side because we still have 4 fills left.  So we are hoping next Sunday we will hit our goal.  Now for the left side, on a good note, Brayden didn't fill a thing.  But on a bad note we only got 48 cc.  I just wish that side would fill as good as the right, but it is what it is and out of our control.  We are now at 415 cc.  So we won't hit our goal on that side. 

This past week on Monday we noticed that Brayden wasn't feeling good, so off to the doctor he went.  We already hit our deductible for the year, so every sniffle he gets, I take him in right away.  Better be safe then sorry.  Brayden had some fluid in his ears and also a sore throat.  Once again on antibiotics for 5 days.  He has had 2 ear infections within 3 weeks, so I got to thinking that he might need to get tubes in his ears.  I emailed Dr. Bauer and he said that will be a good idea because it will save us in the long run with him getting sick while he has expanders in.  So this week he will be going to a ear, nose and throat doctor and if that doctor thinks Brayden should get tubes put in his ears, then he will get it done the same time he is having surgery in Chicago.  Dr. Bauer will arrange a ENT doctor to come in while Brayden is already put under, that way Brayden doesn't have to be put under anymore then he already has to.  I guess we will see what the ENT doctor has to say this week and if he needs them, it will be nice to know that we can get it done soon. 

Can't believe Brayden will be having surgery 4 weeks tomorrow, I know Geoffrey and I and I am sure Brayden are ready for these expanders to be out.  I noticed it must be so uncomfortable for him to sleep on his back with 2 uneven bubbles, so today I put a memory foam pillow in his crib when he went down for his nap and he actually used it the whole time.  So I hope he continues to use it because it will be more comfortable for him.

Today I couldn't help but laugh when I was getting his dressed, he was wearing 12 months pants and a tight 24 months after tonight's fill...looks like he will have to wear 2T for his tops.  He is starting to walk more and more, this week he took 5-7 steps one night at least a dozen one of these days, he will take off.  No pressure Brayden, your only 16.5 months old and you have 2 uneven bubbles in you ;) ha!

Sunday, March 18, 2012

6th fill done...half way done!

Tonight was fill # 6....I was excited that we reached the 6th fill because last round, he got the infection and we never reached to fill #6.  This week we have been kind of worried about his expanders, think some of the reason could be from us just being over worried that we don't want a repeat like last round.  But we have been noticing that his expanders get a slight red color from time to time and last time we seen this, it was from infection.  So I took pictures right away and emailed them to Dr. Bauer, he said he's not worried about it, since Brayden does not have a temperature and he did just wake up from a nap ( which he sleeps on his back) and the redness can be caused from that.  It can also be caused from the new blood vessels that are forming in the new skin. 

For tonight's fill we didn't have anyone over to help us, which it does make it easier with the 3rd person.  But we managed to get it done.  Poor Brayden for some reason felt when Geoffrey stuck him with the needle, on both sides :(   Luckily, he just cried at 1st when the needle went in, then he ate some yogurt and watched his TV program and he calmed down.  He is such a strong amazing little boy and I feel so blessed to be his mommy. 

We did have a good fill tonight, well....we didn't get as much on the right side as we did the past 2 weeks  ( Dr. Bauer said easy does it) so we thought we would play it safer this week and we got 65 cc's the right is at 615 cc.  The expander he has in is a 750 cc expander....but he can easily go to 1000 cc ( if Dr. Bauer lets us and we have no infections or problems for the following 5 weeks).  On the left we got 50 the left is at 367 cc.  It's amazing how different in numbers the 2 expanders are.  Gosh must be so uncomfortable for Brayden to sleep on his back with those uneven expanders in. 

This week we had a play date with Brayden's nevus buddy Joshua.  He lives 15 minutes from us.  We are so lucky to live to close to the Melton's.  They have been a great support system for us from the start.  It also helps that our boys nevus is very similar and Joshua is a round a head of Brayden, so I learn a lot from them on what will be happening to Brayden next.

Brayden hanging out with his nevus buddy Joshua...yes, it's hard to get 2 toddlers to take a picture ;) ha!

Brayden watching TV while the numbing cream sets in ( well we thought it was anyways, poor Brayden) He had front row with his high chair...he loved it!

Right one is at 615 cc & left is at 367 cc

Left expander the smaller one

Right expander

The center stitches, I emailed Dr. Bauer about, they are slightly red, so we may have to get them taken out this week

Sunday, March 11, 2012

5th fill done

Today we did Brayden's 5th fill at home.  We were lucky to have support from some friends today, Ardita, Stephanie and Katie came over to help us.  We are very greatful to have such supporting friends that want to help us during the fills.  Brayden did an amazing job once again, sitting like a good boy and didn't cry once.  But you never know how he will react, so it's always good to have someone other then Geoffrey and I during the fill. 

Brayden's 1st round of tissue expanders, we only got to 5 fills...then he got the infection and it was off to Chicago for emergency we are at the 5th fill once again, so we will be praying every week that we have no problems with this round and everything continues to go as planned for Brayden. 

Tonight we did great once again on the right side and we got 90 cc' the right is at 550 cc! We are very happy with that side right now....the left however is the side that isn't doing as great and we only got 45 cc's in and now it's at 317 cc's.  Over all we are very happy with our numbers right now and it still doesn't seem to bother Brayden, which makes this process so much easier on all of us. 

Since his expanders are getting bigger each week, I think it will be a good time to go through his closet this week and box up all his clothes he no longer fits into....tonight I put him in some sweat pants for bed since his pj's are too snug.  Luckily he's a boy and he doesn't mind what he is wearing, just as long as I don't put a hat on him or shoes...he's one happy guy ;)

The right is the larger expander at 550 cc's and the left is at 317 cc's


Sunday, March 4, 2012

Fill #4 done at home!

Tonight we did fill #4 at home, Brayden was a super hero once again and did a great job at sitting still and watching Shrek while Geoffrey did the fill and I distracted him.  Just amazes me how strong he is, at one point Brayden looked back and seen Geoffrey wearing a mask ( since he has been sick with a cold this week) and he seen Geoffrey with the needle and just leans forward and let's Geoffrey do his thing. Just wonder how long it will continue this good for us while doing the fills.

I was happy that Brayden is finally better and his cold went away, so that meant we were on track for our Sunday fill.  Feels like last Sunday was just here, but then again with the weeks going by so fast that only means we are that much closer to getting these bubbles out on April 23rd.  If everything goes correct and we have no problems, we will have 7 more fills. 

We were happy with the results tonight. We got 110 cc in the now the right is at 460 cc and the left, we did better then last week and we got 50 cc in.  Now the left is at 272 cc.  For the last round Brayden's expander's were at 435 cc and 350 cc after 5 fills....then we had to do the emergency surgery 4.5 weeks early.  So we are very happy that we are on our 4th fill and doing so well.

So now one of the problems we have come across, tonight after the fill we went over to my grandparents for dinner since my Aunt Donna & Uncle Randy, Shirley & Ken are in town.  We loaded Brayden up in the car seat like normal and we noticed that his expander's are getting so big, when he sits, he can't lay his head back on the head rest.  I will try a neck pillow next time we take him anywhere, so hopefully he will keep it on his neck.  Another thing we noticed his 18 months pj's are getting smaller, so looks like we will have to do some shopping soon for bigger PJ's and shirts.

We appreciate all the continued support and prayers every week.  And also thank you for everyone to helping us out and continuing and buying cookbooks.  We are very grateful to have all of you!

Brayden in the car seat on the way home from my grandparents, poor baby and his neck

Right side at 460 cc and left at 272 cc

Right expander

Left expander