Brayden's Journey

Wednesday, November 30, 2011

3rd Laser surgery....DONE!

Today Brayden had his 3rd laser treatment surgery at the Phoenix Childerns' Hospital we had to check in at 6:30 am. He couldn't have anything to drink after 6 he did pretty good this morning and was full of smiles and while he played in the play area while waiting for Dr. Price, he even crawled around the nurse station and flirted with the nurses ;)

Finally at 8:45 they took Brayden back and when we handed him off to the nurse he was full of smiles and didn't care that he was leaving us.  What a strong little boy! Surgery only took less then 45 minutes and then it was time to see Brayden in recovery.  When he woke up he didn't cry much and he normally drinks 8 oz. right away but he was extra sleepy and only drank half a glass of apple juice. 

When Dr. Price came back to talk to us, she said that everything went great and they she upped the dosage of the laser and that he already has some blistering and that she would put him on a steroid for 5 days to help with the swelling.  And if he seems like he's in pain we can give him pain meds, but Brayden is usually fine and doesn't need them. 

I told Dr. Price that Brayden would be going to Chicago for surgery on Feb 2nd, so she said that we would wait till May to do his next laser surgery.....he should need around 3 more rounds of laser.  We can already tell the difference and it looks lighter then it originally did.  Now since the laser was done today, the pigments in the satellite spots are super dark and they will start to scab over the next few weeks.  Then they will start to lighten. We have to keep him out of the sun for the next few weeks and put Vaseline on his blisters.  He got 5 or 6 big blisters, which she said is normal and when we use the Vaseline it will help keep it moist.

After we got out of the hospital we went to pick up his steroid and then we went to my grandparents and we went out for lunch at our favorite Mexican restaurant.  Brayden was so good at lunch and ate a whole banana and was full of smiles.

After we got home he took a 2.5 hour nap which he needed.  Thank you everyone for all the support and for thinking of Brayden and praying for him. 

We still have plenty of cookbooks for sale, please let me know if you would like one, they make great Christmas gifts :)

Brayden in his super hero cape waiting for Dr. Price

Brayden reading book with mommy

Brayden loved this toy! He was enjoying the play area at the hospital

As you can see his spots are super dark again, but they will start to scab and then fade

Here are a few of his blisters...poor little guy! He doesn't even complain with the blisters that he has

After his nap, yes he wanted 3 binky's, how can I say no?!

Happy Brayden full of smiles for mommy!

Brayden enjoying his bath after his nap and talking away to his ducky :)

Monday, November 14, 2011

Brayden turns 1...where did this year go?!

Brayden turned 1 on November 1st....can't believe how fast this past year went.  Don't know if it's because of all his surgeries or him just growing up to fast.  It has been an amazing year and Brayden has taught us a lot over the past year.  He is such a happy baby or should I say toddler and we have so much fun with him.

Brayden is on a break from his surgeries, which is nice.  He will have his next laser surgery on November 30th.  Then 6-8 weeks out he will have another one before his next round of tissue expander surgery in Chicago on Feb. 2nd. 

Here are some recent pictures of Brayden from Halloween and his birthday.  We still have cookbooks for sale, they make great Christmas presents :)

Brayden's 1st Birthday! He still has blue eyes and his hair is getting lighter and he still has no teeth

Brayden took pictures with his 2 buddies, Joshua & Zach for nevus calendar...they will be in the month of May and be the 3 Amigos :) This is not the picture we used though, you can buy the Nevus calendar for $10, contact me if you want the information

Mommy's Little Pumpkin his 1st Pumpkin Patch

Yes, he is sitting inside a real pumpkin....turned out so cute!

Here is our little Lion for Halloween, ready to go Trick-Or-Treating

We went to the zoo with my parents for Brayden's birthday, he loved it!

Brayden's amazing birthday cake donated by Christine Leavitt...she did such a GREAT job! We loved it!!

Brayden eating his adorable smash cake that Christine made him, he loved it! So yummy!

Happy 1st Birthday Brayden Michael Phillipson!!

Tuesday, October 11, 2011

Updated picture with stitches out

Brayden had another 1st today, he came over to me when I was on the sofa and he reached out his arms and he said momma! I was so excited to hear him say that.....I then told Brayden, you just said your 1st word and it was momma and then he shook his head no at me.  It was pretty funny!

He is doing good with his stitches out and the skin is healing up great.  Here are some pictures

 The picture below is the most recent of his satelite spots, they are still super dark and scabbing over still.  They should start to heal and fade in the next few weeks

Sunday, October 9, 2011

2nd laser surgery

This past Wednesday Brayden had his 2nd laser surgery at Phoenix Children's Hospital.  Geoffrey & I took him at 7 am and his surgery was at 9 lasted an hour.  Dr. Price who is his dermatologist did the surgery.  She is the nicest doctor, so caring and we are lucky to have her.  Dr. Price did over a 100 different zaps to all his satelite spots on his arms, legs, belly, back and a few on his face.

When Brayden woke up, he downed 8 oz. of formula and was alittle out of it, since he was put under.  I had to go to work, so Geoffrey took Brayden home and they spent the day together.  When I got home that night I couldn't believe how good Brayden was acting, he was crawling aroud like nothing happened. 

This time they used a newer laser and it was more intense, Brayden got blisters this time around.  Dr. Price told us to give him a steriod and also put on vaseline and that will help.  The spot look super dark right now, but over the next few weeks they will start to lighten.  Then Brayden will go back in 6-8 week for another round of laser.  We hope he will only need 3-4 more rounds of laser, each time they do the laser, the satelite spots fade. 

Bryden is 3 weeks away from his 1st birthday...where did the time go?!
 Here is before pictures of some of his satelite spos on his leg
 Brayden playing in the hospital before surgery, he loved this car!
 Brayden loves to put things on his head!
 Daddy & Brayden at the hospital
 Mommy & Brayden
 Daddy making silly faces
 No comment needed here, ha!
 Take 1 of taking a family picture, Brayden...thought it was funny to pull mommy's hair
 2nd take of family picture...he still wants to pull my hair!
Later that day after surgery, playing with my toys....crawling every where 

Tuesday, September 27, 2011

Stitches are out!

Today was finally the day, to get Brayden's stitches out.....he hated wearing that ace wrap for the past 2 1/2 weeks.  Poor little guy would get so hot with the ace wrap.  Dr. Price ( who is Brayden's dermatologist) and Kellie, kindly offered to remove Brayden's stitches for us.  I was happy knowing Brayden would be in good hands. 

Geoffrey had to work today, so that left me taking him alone.  I packed his diaper bag with plenty of treats and his DVD player.  To remove the stitches took an hour, since he had over a hundred of them.  Brayden was such a GOOD boy and he just leaned forward and ate his gold fish snacks and watch Mickey Mouse on his dvd player.  He didn't even cry, just at the end he wanted me to pick up him, but other then that he was PERFECT!

Brayden has been through so much and everything that he goes through, just amazes me how strong he is.  I am super happy that things went good today and his stitches look great and I think it helped that he was in good hands with Dr. Price and Kellie, they are both great!

Now Brayden has a break, well until next Wednesday, Oct. 5th. He will go to Phoenix Children's Hospital for his 2nd round of laser treatments.  He will be put under and surgery last around a hour.  They will be zapping all his satellite spots.  Please keep him in your prayers, since he will be going under for this surgery.

Brayden is growing up to fast, can't believe he will be 11 months on Saturday.  He has been "army crawling" for the past few months and Sunday he crawled for the 1st time.  I was so excited I was clapping my hands and he sits up and claps his hands as well.  It was so cute! He has also become a dancer, when he hears music playing or a song come on, he will wave his hands in the air and if he's standing up, he will bounce up and down. So fun to see him grow and learn new things.

For those of you that don't know, October is cookbook month, if you haven't bought your cookbook yet, we still have plenty left and thank you for all the support to everyone who has already bought one.


Wednesday, September 21, 2011

TC Challenge: Chasing for the Cure

One of Geoffrey's co-workers at T.C. Eggington's, Katie Dempsey reached out to Geoffrey and I last week with an idea that she has.  She was trying to think of ways to help us raise money for Brayden's medical expenses as well as raise awareness for Congenital Melanocytic Nevi. 

Katie came up with this great idea.....she calls it the TC Challenge: Chasing the Cure.  In honor of Brayden and his tough fight for overcoming Congenital Melanocytic Nevi. She is getting a team together to run the half marathon in the P.F. Chang's  Rock and Roll Marathon on January 15th, 2012.  

This is what Katie has to say about the event, "Team members’ goals include fundraising by selling 10 cookbooks and raising the awareness level of Congenital Melanocytic Nevi. Thanks for your support and common interest in having a ...positive impact on the lives of young children battling this disease." 

When I first read this that Katie came up with this idea, I started crying, it means the world to us that we have so many people who support Brayden and want to help out in any way that they can.  Knowing we have such amazing support makes this process a lot easier on us.  

So now the question is, who can join our team? Anyone who wants to help support Brayden on the TC Challenge: Chasing the Cure. It will be a fun event and especially since we will be doing this with friends and family.  

Now most of you may know, I am not a runner, I love to workout and also love to walk.  I don't know if I will be able to run this half marathon but what I do know I will make it across that finish line even if I walk the whole thing in honor of my son.  He is a strong little boy and after everything he has been through already this past 10 months and everything that he will have to deal with later on in life, I will finish this for him.  Everyday when I look at him, I'm amazed at how strong he is and it only makes me stronger.

Please let me know if any of you have questions about this event.

Tuesday, September 20, 2011

Drain tubes are out !

Last Friday, Geoffrey and Kate took Brayden to his pediatrician to get his drain tubes pulled out.  Last time when I was in Iowa with him in July, Steph Bellcock came over to pull them out and all you do it snip the thread and gently pull out the tubes at the same time and your done.

Well on Friday it wasn't this easy for Brayden.  His pediatrician is a older lady and I guess she's never done this before (which we could have taken them out at home by ourselves, but we felt better going to a doctor) and she really didn't know what she was doing, she had the tweezers out and she was pulling Brayden's skin and his hair on his nevus and Brayden was screaming and she did one at a time to make it worst. So long story short, we are looking for a new pediatrician because we don't feel comfortable with the one we have.  We have a hard time understanding her since she is Chinese and it makes things difficult.  We are glad that is over with and so is Brayden, he did not like those tubes in.

Friday night he had his 1st bath in a week and he loved it! Now we just have to keep a ace wrap on him for another week or 2.  Next week his hundreds of stitches will come out, this will not be a fun day for Brayden or for us.  Poor little guy will have to sit still while they take these out and I imagine it will take well over an hour.  Geoffrey & I will be taking him to Dr. Price and she has been kind enough to offer to take them out.

Dr. Price is Brayden's dermatologist doctor and she is always willing to help out.  Which is great to have her. Brayden will have his 2nd laser treatment at Phoenix Children's  Hospital on Oct. 5th with Dr. Price.  We will know the day before what time he will be going in for that.

On a good note Brayden's stitches are healing up good and healing.  No holes or infection, which is great! He just wants to play, play and play....he still has no teeth and he is 10 1/2 months and he just army crawls where ever he goes.  He has started to pull him self up and walk around the furniture now, won't be long until he's a walking. 

Brayden did start a new thing since he got back from Chicago, he only wants Geoffrey, if Geoffrey is around.  He will cry and cry until Geoffrey picks him up and once he's in daddy's arm he smiles and gives off this laugh, like ha....I'm with dad now.  Even if Geoffrey is holding him, I will reach out for Brayden and say come here, and Brayden looks at me and shakes his head no and latches on to Geoffrey for dear life.  It's funny but wrong....I swear when he was in Chicago, they gave him so daddy drug ;)

Brayden is being so strong throughout all of  this and everyday he amazes me with his strength. It helps Geoffrey and I out, knowing that he is so strong, that we can also be strong for him.  I know we couldn't get through all of this without all the love and support from everyone!

Tuesday, September 13, 2011

Brayden means brave...and yes, he is Brave!

Today I remembered what the meaning of Brayden means, it is brave and it had me thinking how his name fits him perfectly.  That our Brayden is indeed brave, he is so strong and I can't believe when I picked them up from the airport on Sunday, he acted like nothing happened and that he didn't just have surgery 2 days prior.  Just amazes me how strong this little boy is and how he hardly complains. 

Yesterday we had a good day, I finally got the news I have been wanting to hear....Brayden's laser is being covered by insurance!!! We are so happy that they finally approved it.  Now that means that he can continue on with his laser treatments on all his satelite spots.  We were waiting for Phoenix Children's Hospital to get the new laser and now they got it, so we think Brayden will have his 2nd laser treatment next month sometime.  He will need 4-5 rounds of laser  .

We are enjoying our time with Kate in town, tomorrow we are going to Sedona for the day and then we will stay in Flagstaff.  Thursday morning we will be going to the Grand Canyon.  Which will be good for Brayden because this way, he will be in his car seat and the stroller, that way he doesn't want to crawl every where.  Brayden has to keep it easy for 3 weeks.  He will get his tubes taken out on Friday, which will be good.  Then he can finally have a bath again!

We booked Brayden's 2nd round of surgery with Dr. Bauer in Chicago yesterday as well.  Brayden will be going for surgery on Feb 2nd (which is Kate's birthday) to get two expanders put in the middle of his back and he will get them taken out on April 23rd. 

Brayden with his bubbles, before the infection started

 Before when he was only 2 months old                    
After his 1st round of tissue expanders

 Right side, those are his drainage tubes he has to keep in for 10 days

 Left side

Sunday, September 11, 2011

Round 1 done....expanders out! Took it like a Super Hero!!

Round 1 is done now! Geoffrey and Brayden arrived in Chicago Thursday afternoon and my grandparents, Bob & Betty meet them in Chicago and 15 minutes after they arrived, Kate (Geoffrey's mom) came from South Africa.  We were so happy that Brayden had such good support, even though I couldn't go with them, I was happy other family could be.

That night they went out for some Chicago pizza and they called it a early night since Brayden had surgery bright and early at 7 am on Friday.  They had to be at the hospital at 6am and surgery lasted for about 3 hours.  Of course, I was a nervous wreck being away from my baby....this is not how I wanted it, but Geoffrey and I can't afford for both of us to take time off work, buy 2 plane tickets for Chicago.  So we are lucky that we had my Grandparents and Kate for support this time.  I know Geoffrey couldn't have done this alone. 

Dr. Bauer was happy about the amount of nevus he removed, he got a hand size removed.  Dr. Bauer said surgery went good and that his skin that he got stretched was good, healthy skin.  Which is good news since he had that infection on the left expander. 

Dr. Bauer also said that Brayden will need to more rounds of surgery...which means 4 more surgeries in Chicago.  Hopefully by the time Brayden is 2 we will be nevus FREE!

Brayden did so good after surgery, he is such a tough brave little boy, with all of this going on, he's still full of smiles.  It makes me realize, how we all stress over silly things in life and things like this is happening to my son and he still remains happy. 

Brayden, Kate & Geoffrey stayed the night in the hospital Friday night and he did pretty good, got some pain meds about every 6 hours.  Also they have to change his drain tubes every 4 hours. This is draining the extra blood/fluids out of him right now for the next week. 

Friday night, he slept pretty good and Saturday morning, it was time to leave the hospital.  As they were leaving the nurse was saying bye to Brayden and he let out a huge smile as they walked out of his room, it was almost like he was thinking, finally...I'm free and out of here! Everyone thought it was super funny! 

That say they drove downtown to see some of Chicago and went out for dinner that night.  They were all tired last night and they called it a early night. 

Today, my grandparents drove back to Iowa, we are so lucky they came on such a short notice.  Kate, Geoffrey and Brayden flew back.  Only bad thing was Kate was on a earlier flight so she couldn't fly with them.  So my friend Dita and I picked her up and took her out for lunch for Mexican food...then it was time to pick up the boys. 

It was so good to see Brayden again and he looked so skinny without his "bubbles".....when he got home, he just wants to crawl and he acts like he didn't have surgery 2 days ago.  It amazes me how strong he really is! Brayden will have a ace wrap around him for 3 weeks and at that time he will get all his stitches removed, which is a lot!

Brayden will let his skin heal for 4 months now and back to Chicago late Jan for his next rounds of surgery to get 2 expanders put in.  Only bad thing about travelling in Jan, is all the snow. 

Thank you everyone who was praying for my little boy, this means the world to us that we have so much support.  Also thank you everyone who had bought a cookbook and donated money.  I also want to thank my mommy group for those who want to help out.  We are so lucky to have such good family & friends!

This is a before picture

This is after his 1st round

As the hospital with daddy in my super hero cape!

Reading a book before surgery

Poor baby, looks like a zoo animal ;)

He really hated these arm restraints

Bob & Betty came to support Brayden!

Granny Kate came all the way from South Africa, she left on the next flight just to be with Brayden for his emergency she is in AZ with us for 13 happy to have her here with us

Tuesday, September 6, 2011

Bad luck continues, off to Chicago on Thursday for surgery on Friday :(

We have had a rough past few days and when I think it will some how get better, it hasn't.  Well last night, I couldn't sleep, I just knew things were getting worse and when Brayden woke up, I picked him up and rocked him and I couldn't stop crying.  I could sense something was wrong. 

Well shortly after he got up, luckily my good friend Melissa who is a nurse was here and she helped change his dressing.  Well as soon as we opened the gauze, what do you know...the hole has gotten bigger since the night before, almost twice as big.  Aww, why is this happening to Brayden?!

I took pictures and emailed them over to Dr. Bauer right away.  Mim, his nurse called me and said everything will be fine and we will just have to keep gauze on it and ace wrap.  And it will begin to heal and that we should still be able to expand that side. OK, good...I was happy with hearing that.  I told her I would go to his pediatrician so she can look at it.  And his dr looked at it and she didn't think it was that bad.

Well then I was driving to work, I felt better knowing that Brayden was going to get through all of this.  Next thing you know, Mim called me and told me that Dr. Bauer got out of surgery and he looked at Brayden's pictures that I sent him earlier that morning and that he has good news, the good news is that we did get a lot of skin stretched and that he should get a lot more nevus removed then we think.  And the bad news is that he is worried that the stitches will only continue to open and that hold will get larger and if we don't do emergency surgery on Friday, the expander could fall out on it's on.  Which is not good.  They told me they want Brayden to fly out Thursday and surgery is Friday to remove both expanders.  Brayden was suppose to have his expanders in until October 10th. 

I understand why Dr. Bauer is worried and I have to trust his judgement since he is the top doctor in the world for this.  It's just hard that we now have more added stress and that we have to figure out flights, where to stay, and who will be in Chicago with Geoffrey and Brayden since my parents are in Florida right now on vacation.

Well luckily we got the flight changed, thanks to Pam who donated the flight for us, she was willing to help right away.  The next thing I did was call my grandparents and they said they are willing to help us and go to Chicago to be with Geoffrey and Brayden.  That made me feel better knowing we are getting support.  I hate it that I can't go with Geoffrey, but my work won't let me have the time off :(   Next thing we did was my dad booked us a place to stay.

Since Kate was going to come for Brayden's surgery that was suppose to be in October, I emailed her to phone us when she got up, she called and she said that she would call the travel agent and see what flight she can get on in order to be at surgery on Friday for Brayden.  Wow, everything is starting to work out and I'm not as stressed now. 

On a good note Destiny and Demi came over tonight to cook us dinner, they also brought Brayden 2 teddy bears and a balloon.  Also Kristy came over for a visit....So nice that we have great friends around for support when we need them.

Now, we are busy packing and getting things ready before Geoffrey and Brayden fly out on Thursday morning at 8:20 am. 

Thank you everyone for your prayers and for thinking of Brayden, he is so strong and I know he will get through this, it's just a set back but we will move forward and someday, when this is all over, we will be greatful that we did this for him and all this stress will be worth it

This is Brayden yesterday, he loves to make a mess when he eats ;)

This is his hole from this was 2 holes

 This is his expander now, it became 1 large hole and yes, that is the expander that you see :(

As you can see Brayden is a happy little guy even though all of this is going on.  He was so happy that his friend Demi came over to play with him