Brayden's Journey

Wednesday, April 25, 2012

Results from round #2 surgery

Brayden had a much better night last night, he slept from 11 pm until 7 am without pain meds.  What a strong little boy! Today he is hanging out with my sister and Makenna.  He loves spending time with his cousin.  He hasn't been walking yet, which is good because he needs to take it easy for the next 2 weeks, so he can heal. He has been eating again and playing with his toys and of course watching his favorite tv show, Dino Dan.

We are very happy with the results, last round since he ended up with infection and emergency surgery Dr. Bauer only got 100 square centimeters of nevus off and now we got 200 square centimeters of nevus off.  So double the amount! Now we will let the skin heal for the next 4 months and do this all over again on August 30th.  He will get 2 expanders in, one on his leg, yes, his upper leg.  And one on his back.  Then he will get them out November 15th.  

Over all Brayden is doing so much better today, thank you everyone for all the support, prayers and encouragement.  We are so lucky to have all of you supporting my little super hero! 

Brayden at the hospital watching Mickey Mouse
 Daddy with Brayden
 1st dressing change with Dr. Bauer and Mim
 Before only 7 days old
 After round #1
 After round #2
 Right side after round #1
 Right side after round #2
 Left side after round #1
 Left side after round #2

Tuesday, April 24, 2012

Long night for Brayden last night

Last night Brayden had a very long night, he was really fussy and on pain meds every 4 hours.  He just didn't seem to get comfortable.  He even slept on his stomach for awhile, which he never does.  I'm sure it felt better for him then laying on his back with all the pain. 

It was a long night for Geoffrey and also my mom, Brayden is very lucky to have the both of them for support.  I called a few times and I could hardly hear Brayden because he was crying so much, breaks my heart that I can't be with him.  But today is a new day and each day he will get better and before we know it, he will be his happy self again. 

He did eat a little yesterday, so that was good that he kept some food down.  For the most part, all he wanted was his pacifiers for comfort. 

This morning they checked out at 9 am and headed to Dr. Bauer's office to visit with his nurses, Mim and Susan.  They did the 1st dressing change and Geoffrey and I were hoping that Dr. Bauer would get to his butt crack and what do you know, our wish came true! Even on the right side it's a little below his butt crack....yay! The results look great and once they get back to Iowa and send me pictures, I will update the blog with before and after pictures.  Brayden's 1st round of surgery he removed 100 square centimeters of nevus and this round he removed 200 square centimeters of nevus.  So double the amount! We are very happy with Brayden's results this round. 

Yesterday I scheduled Brayden's next round of expanders, luckily he will have a 4 month break of being bubble free! He will go back to Chicago August 30th to get 2 more expanders in, 1 in his back and 1 in his leg.  Then he will get them out November 15th. With each round, we are closer for Brayden being Nevus free!

Brayden, Geoffrey, my mom and my Aunt Donna are on the long 7 hr drive back to Iowa right now.  Brayden is doing great in the car, he has been sleeping for the most part, which is what he needs right now. Geoffrey will fly back on Thursday and Brayden will be staying in Iowa with my family until Mary 5th, then my sister and Makenna will fly him out here.  Brayden will love spending time with family. 

We want to thank everyone for all the love and support the past few days, means so much to us that we know so many people care about Brayden.

My friend Wendy is doing an online benefit for Brayden with her company Thirty One.  You can shop online till this Friday to support Brayden.  Here is the website below

Monday, April 23, 2012

Sugery #4 done & bubble free

First of all I would like to thank everyone for all the support you given us today.  It means a lot to us to have so many people care about Brayden.  And we have over 10,000 views on our blog now, yay! Love all the support!

Yesterday Geoffrey and Brayden left for Chicago at 6 am.  My mom and aunt Donna picked them up from the airport, then they were off for some yummy Chicago pizza at Lou Malnati's.  They all took a nap once they got to the hotel and even got upgraded to a suite!

This morning they had to be at the hospital at 6 am, surgery was at 7:30 and lasted till 9:50.  Dr. Bauer is such an amazing doctor and we are so lucky our son gets to be treated by such a talented doctor.  It's hard for a mother or a father to put a child through all of this, but with Dr. Bauer on our side, I know everything will be ok.  And what do you know, Brayden did great in surgery and now has been through 2 rounds of expanders! Dr. Bauer was happy with the results and he said they got more off the right side, since the expander was stretched out more.  But he did get a lot of nevus cut off! Can't wait to see the results!

Today has been a hard day for my baby, he hasn't eaten anything yet, just liquids.  He has been fussy off and on, but luckily napped some today, so that has helped. Just amazes me how strong he is and someday I will tell him all these stories about how strong he really is!

They will stay the night in the hospital, that way they have nurses on hand if they need anything. Tomorrow once they discharged they will stop at Dr. Bauer's office for the 1st dressing change and see the results! Please continue to pray for Brayden tonight that he has a peaceful night rest

Here is Brayden arriving to the hospital and watching his new Dinosaur movie

Being playful and playing peek-a-boo before surgery in his super hero cape

Love this little boy!

Geoffrey with Brayden in recovery

Brayden not too happy here, pretty out of it

 Finally sleeping

Friday, April 20, 2012

Fill #11 done! Last fill for Round #2

Can't believe tonight we did our last fill for round #2.  So happy this round is coming to an end, that only means that we are one step closer to getting Brayden nevus free! I know we still have more surgeries ahead of us, but it's nice to have 2 rounds almost behind us now.  We are very happy with our final numbers.  Our goal was 750 cc in each expander.  Tonight we got 60 cc in the right, so the final number for the right is 930 cc's! Way above our goal!! The left we got 70 cc in and the left total is 680 cc's.  Which we are also very happy about, even though we didn't hit the 750 mark. 

Over the past week, Brayden has been walking more and more.  So I am sure by the time he comes back from Chicago and Iowa, he will be running to me at the airport! Geoffrey and Brayden fly out at 6am on Sunday morning.  My mom and Aunt Donna will drive from Iowa, to Chicago to pick them up and be with them for surgery.  Brayden has to be at the hospital at 6am on Monday morning and surgery is at 7:30am.  Please keep my baby boy in your prayers.  He is such a tough little boy, I know he will do great.  Going to be hard on mommy not being with him, but he will be happy he has his daddy with him this time. 

After Chicago, Brayden will be going back to Iowa to spend time with my family.  I will be away from him for 13 days. Going to miss my baby boy but I know he will have a great time.  My sister and Makenna will fly him back here, then they get to stay with us for 10 days!

This past week we have sold some cookbooks, thank you to everyone who has bought one and supported Brayden along his journey.  We also want to thank everyone for the continues prayers for Brayden.  All the support has helped us a long the way, couldn't have done with without our amazing family and friends.

Brayden enjoying some dinner while he waits for the numbing cream set in

Final numbers for round #2 Right at 930 cc's and Left at 680 cc's

Left expander

Right expander

Sunday, April 15, 2012

10th fill done...1 more to go for this round!

Tonight we did fill, only 1 fill left and this round is done! Can't believe in 1 week Geoffrey and Brayden are off to Chicago bright and early on a 6 am flight.  This round seemed to go by quickly, maybe because we had no infections like 1st round. 

Katie came over tonight to help us with the fill, Brayden did such a good job at sitting still.  He watched cars on his dvd player as Geoffrey did the fill.  We got 60 cc's in the right now at 870 cc's and we got 70 cc's in the left now at 610 cc's.  We are very happy that we are doing so great and next week on Saturday we will do another fill. 

Look at those 2 huge bubbles! Right after his fill, he was up walking again, amazes me how strong he is. He is walking more and more this past week, so I am sure after surgery next week, he will be taking off and running!

Left side at 610 cc's

Right side at 870 cc's

This past week we had a play date with Brayden's nevus buddy, Joshua. We are so greatful to have them live so close to us. We went to Geoffrey's work to eat breakfast and took the boys to the Youth Museum. The boys had a great time! And so did the mom's :)

Trying to get a picure of the boys...not going to happen, they are too busy playing! ha

Take it away boys, play us something good ;)

Sunday, April 8, 2012

9th fill done! Happy Easter

Happy Easter! We had a great Easter weekend and tonight was fill #9...amazing how fast these weeks have gone by. 2 weeks tomorrow and Brayden will be having his 4th surgery in Chicago.  This time around it will be Geoffrey taking Brayden.  It's going to be hard not being with Brayden during surgery but I know he will be in good hands with his daddy and my mom. 

This week I talked to Dr. Bauer and he said he wants Brayden to wait on the tubes.  We will see how the next few months go and if he continues to get ear infections, then we will get the tubes put in during his next surgery which will be in late summer. 
Even though Brayden has these uneven bubbles in....he continues to amaze me everyday how strong of a little boy he really is.  Yesterday he took 20-30 steps when we were at Peter Piper pizza....just watching him play and interact with other kids being so happy, makes this whole process so much easier on us.  Just reassures us that we are doing the right thing for Brayden and we will all get through this. I know we have a light at the end of this tunnel for Brayden and all his surgeries and I can't wait for that day to come.

So many people have told me how strong I am and how well I am handling all of this, I really feel like I am just doing my job as a mother and I want the best for Brayden and this is it, I know he will be okay and I know god can only give you what you can handle. It does make me sad when I see people cry when they see Brayden's bubbles, they think he is in pain, but honestly he acts like any other little boy. 

Brayden went to visit the Easter bunny, good thing it was free because he was not a fan ;) maybe next year Brayden

Getting ready for his Easter egg hunt

Tonight we went over to my grandparents for Easter, so they helped out with the fill. We got 50 cc in the right, now the right is at 810 cc! I can't believe how great that side is doing. On the left we got 55 cc and now we are at 540 cc. Brayden did pretty good for the fill, even though he has no nap all day, he was such a champ. Check out how big his bubbles are!


Sunday, April 1, 2012

8th fill done...3 more fills to go until removal and we met our goal for the right side!!

Tonight we did fill #8! We are happy that he is doing great with his expanders and every week we have been able to do a fill.  The fill went great and Katie came over again tonight to help us with the fill.  He moved a little when the needle went in the right side but then he was a tough little boy and sat still while Geoffrey did the fill.  We got 65 cc in the right side and now we met our goal which was 750 cc...we are now at 760 cc! The left side Brayden didn't feel a thing and we did better on that side this week then the right, which we were happy about.  We got 70 cc on the left, so now we are at 485 cc.  I know we won't hit our goal on the left side, but we will be happy if we reach 600 on that side. 

This past week Brayden went to the ENT doctor and funny enough the ENT doctor that we happen to just pick, he studied under Dr. Bauer's son, Erik, who is a ENT doctor in Atlanta.  Guess good doctors run in the family :)  The doctor said since Brayden has only had 3 ear infections within the past few months, that the rule of thumb is 6 ear infections within a year.  So he said he would wait for Brayden to get them.  I then emailed Dr. Bauer and he said yes, that is true for for the average kids without expanders and he said that the number of infections may not be as important factor there are recurrent infections when the patient is going to have tissue expanders. Which we know can be at risk because of the ear infection. And he doesn't want to risk the expanders, so we have agreed to get tubes in his ears when he has his expanders taken out April 23rd. At least Brayden will already be under and they can just have a ENT doctor come in and do it all at once.

This was last week, right after his fill...he was jumping on Geoffrey trying to beat him up.  Amazing how tough my super hero is!

Right at 760 cc & left at 485 cc

 Brayden has been such a good boy....he deserves a surprise gift after his fill tonight...a 4-in-1 trike...he loves it! I like it because we can take him for a walk and push him in it and it has the shade, perfect for Arizona ;)

And he's take it for a spin outside with mom

He had so much fun on his trike...he cried and cried when we came inside

And when we came inside, he wouldn't get out...he wanted to sit and watch TV in his new trike.....guess he likes it, ha!