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!

 

 

 

 

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

 

 

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

 

 

 

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!!

 

 

 

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

 

 

 

 

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!





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