Aiden's Birthday Fundraiser!!!!!

Aiden's 1st birthday has already passed but we have yet to have his big party! We felt that it would be a lot more fun (and less stressful) to wait until he was bubble free so we picked to have his party on the next available day which ended up being December 3rd.

His birthday is extra special to me so I wanted to make sure we did something extra special for him. I knew that I had to include Nevus Outreach in this special day. This organization has touched so many lives and we are very grateful they exist. Every other year, Nevus Outreach holds a huge conference where nevus families can come and socialize with each other and learn a lot of information about the condition. It is something we have looked forward to going to since Aiden was born. 

The next conference is in July of 2012 and we are so excited to be attending. They work very hard to keep the costs low so that the people who want to come can afford it. Raising money is not always easy, especially when not too many people even know or understand about the condition so Nevus Outreach reaches out to us to help out. They provide a way for us to help raise money through what they call "Grassroot Fundraising" and in turn they help discount our cost into the conference based on the amount of money we raise. As soon as I read about this, I knew this is what we should do for his party. This is the best gift anyone could ever give to our son. A toy or clothes only last a short amount of time but a charity changes lives. I am so grateful for Nevus Outreach and I can't wait for Aiden to meet more new nevus buddies throughout his life.

We thank you so much for your support. If you would like to make a donation to Nevus Outreach in honor of Aiden's 1st Birthday, please click on the link below!

Aiden's 1st Birthday Grassroot Fundraiser

We also have cookbooks still available for sale if you would like to help support Aiden's surgeries in Chicago. They make perfect gifts for the holiday season! You can order directly from the blog or if you live near me, I can get a copy to you. We can't express how grateful we are for having such amazing friends and family throughout this journey. 

RESULTS from Round One!

I have been a bit busy since returning home from Chicago, but I figured that Thanksgiving would be a perfect day to update everyone since we are SO THANKFUL this year.

Aiden's second surgery in Chicago was so much better than I ever thought it would be. Several of my friends had told me that expander removal was so much easier but it is difficult to really believe that until it happens. I had a little bit of anxiety the night before surgery but I was really surprised at how calm I felt the next morning. I am pretty emotional in general so I still thought that I might shed a tear or too at some point during the day but it never happened. I feel 100% comfortable with Dr. Bauer and I think that helped a lot. Aiden seemed a little scared but everyone around him was very involved in making him as happy as he could be. 

The one thing that drove me crazy this surgery was the wait. Last time it went by so fast but I was also a lot less anxious to see Dr. Bauer in the waiting room. I couldn't wait to hear the results this time. Luckily, Michael and I sat next to some very friendly people who helped pass the time. The surgery was only about 2 hours long but it felt like an eternity for me. When Dr. Bauer walked through the door, I could tell he had GREAT news for us.

The first thing he told us was that "WE DID GREAT." This has really stuck with me. The success of the surgery played a huge role in how Michael and I did expanding at home and I love that Dr. Bauer makes it a point to give us some credit. He told us that the back part of the nevus is completely removed and that a small portion is left on the upper chest and arm. I couldn't believe what I was hearing! I knew that we should be able to get a good amount off but I really had no expectations. It was such a huge relief. Dr. Bauer let us know that next time he would definitely have a chest expander and that he would decide later on what he would do with the arm so we may end up with two expanders again next time as well. I am confident that Dr. Bauer knows best and that the right decision would be made.

The rest of the day, we focused on taking care of Aiden as we were secretly dying to see results. It was so great to have him back in my arms. He had a little bit of a difficult time at first but soon enough we had him resting up. Unfortunately, he has become afraid of strangers so every time the nurse would come in, he would cry or scream. We knew that the best thing would be to head back to the hotel but Aiden had to be able to keep his food down before we could leave. It was a long day but we were back to the hotel about 6pm.

The next day, we headed off to Dr. Bauer's office for the big reveal. Mim was so excited to see us again and so were we. Aiden was a little unsure this time around and didn't like the dressing change very much but he did pretty good considering his fears. It is difficult for me to describe what it felt like to see the results for the first time. It was amazing and strange all at the same time. I had spent an entire year looking at his nevus everyday and now to see a lot of it gone was unreal! All I could say was "WOW," over and over again. Simply FANTASTIC progress. The stitches are never easy to look at but I will take that any day over constantly checking the nevus for any changes. Mim thought everything looked outstanding and was very happy for us!

I know you all have been wondering what the progress looks like so take a look for yourself. I haven't been able to get the best pictures because he doesn't like dressing changes so we try to make them as quick as possible but the pictures are still AMAZING!

Our little superhero gearing up for surgery!

The back as a newborn!

 DRUMROLL PLEASE...

After surgery! ALL GONE ON BACK!!!!!!

The front before surgery!

AFTER SURGERY!!!!!!!!!!

Thank you so much to everyone who has been following Aiden's journey. We are very excited to have a break from expanders until March! I will continue to keep you updated on his healing progress. So far, he is doing well!

Have a very HAPPY THANKSGIVING!!!!!!!!!!!!!!!!!!!

The Last and Final Fill of Round One!!!!!

Tonight was a great night! It was the last fill of round one! Everything went so smoothly that I felt like a pro. I am so excited that I won't have to worry about expanding for another four months!

I was able to get in 20cc in the belly and 25cc in the back! The final total for the belly expander is 470cc and the back expander is 500cc! Isn't that amazing! I am so glad that we had such a successful round. Aiden did so amazing throughout the process and I am proud to be his mommy.

We will be leaving for Chicago on Saturday. I am oddly excited for this surgery to come. Seeing results from these past 12 weeks is going to be so amazing. Dr. Bauer and his staff is more than I ever could have dreamed of and I am so thankful for them!

Take a look at Aiden's bubbles! Next time you see pictures of him on here, they will be gone!!!!!!!! YAY!

His big belly at 470cc!

His big back at 500cc! 

Look at how wide he is!

Aiden's 9th fill

We were supposed to do Aiden's fill yesterday but I didn't want to do one on his birthday so we did it this morning. The hardest part now about doing the fills is keeping him still for 45 minutes while the numbing cream does its magic. It would be so wonderful if he would just sit through an episode of Mickey Mouse Clubhouse but that lasts about 10 minutes! Daddy did everything he could to keep him busy but it was a long 45 minute wait!

I noticed this past week that Aiden's expanders were not softening up as much so I wasn't expecting to get much in. Besides, I am still taking it easy since the incision area is slightly irritated. Aiden did great. A little bit of tears but I credit that to being upset that he had to sit in a controlled environment some more. I got a whopping 20cc in the belly and 25cc in the back. Aiden now has totals of 450cc in belly and 475cc in the back. Even though it was a small amount, it sure did make a big difference. I am so glad that we are near the end because its getting a little uncomfortable for him, especially in the car and on the changing table. Luckily, after a doctor's appointment today, Aiden won't have to go anywhere in the car until we head to the airport since we are in quarantine now.

Take a look at his growing bubbles!

His clothes are getting a little hard to get over such a wide area but they will fit perfectly after surgery!

Playing with a new birthday toy right after his fill! 

Aiden's First Birthday

Today is Aiden's first birthday and it amazes me that an entire year has gone by already! There certainly have been times throughout the year that seemed like time was moving slow but for the most part, it feels like a blink of an eye. When I look at Aiden, I am one proud mommy. He is one of a kind. His personality lights up the room and he absolutely loves every bit of attention that he gets.

Thinking back on November 1, 2010 brings back such an emotional time in my life. When I woke up that morning at 4:30am, I most certainly didn't expect to be so scared or have so much anxiety after he was born. For weeks I didn't know how to feel. I was happy, sad, anxious, scared and blessed all at the same time. I had the perfect little baby boy with a bunch of unanswered questions. I cried randomly and thought the worst. It was definitely not how I pictured the day to go but I am happy that its now just a memory. 

I am so thankful to be in a much better place today that it brings tears to my eyes. I knew there was no way I would get through today without crying just a bit. It was a tough time in my life but I wouldn't take it back simply because I wouldn't have the same Aiden. I am so much stronger now that I have questions answered and a huge support group. Nevus Outreach has been a life changer. Without them, I would have made decisions not knowing that they would have been a mistake due to being badly misinformed. I have also made lifelong friends  in the process and I love knowing that Aiden has plenty of little buddies who he can relate to when he is older. Thank you to all my friends and family for being there throughout this year. I would have fallen apart without you. 

Today was a FANTASTIC day. Michael and I took him to Disneyland for a few hours and he had a blast. We were even able to get a picture with Goofy, which he always enjoys! Then, we headed home to get ready for a small party. Due to surgery being so close to his birthday, we decided that it would be more fun to do his bigger party after we get back from Chicago but I still wanted to do something to celebrate his happy little life today! So, we invited a few people over, had some dinner, opened some presents, and let Aiden have his first taste of cake! He wasn't too sure what to think of everything but we all had a blast watching him experience his 1st birthday. Here are just a few pictures from today.

Grandpa and Grandma Rexroat

Uncle Trevor and his girlfriend, Lisa

Grandpa and Grandma Savage

Our fun neighbors...Audrey, Mike, Joyce, Monique, Juliann

Aunt Renee

Juliann giving Aiden a birthday kiss! 

Mommy and daddy with their birthday boy!

Aiden loves characters at Disneyland

Opening gifts...of course, Mommy opened them ALL

First Birthday cake...he was really unsure what to do with it. Hardly made any mess at all. 

Even though I am sad that his birthday snuck up on me so fast, I am so HAPPY because this means that we are now less than two weeks away from leaving on a plane back to Chicago. We are back in quarantine now until we leave just to make sure that Aiden does not get sick before surgery. It's hard to stay cooped up in the house but I just can't risk it, especially in the middle of cold and flu season. Luckily, we leave one week from Saturday so its not as long as the first surgery.

Thank you so much to everyone who has followed and supported Aiden's journey thus far! I will continue to keep you all posted...we have two more fills to do and then Dr. Bauer is going to work his magic on removing nevus! I am so excited to see results!!!!

With only a few hours left of this day, I would like to wish my little Aiden a HAPPY 1st BIRTHDAY one more time! Also, a happy birthday to his nevus twin, Brayden, who was born on the same day as Aiden! We crossed paths back at our first Nevus gathering in Arizona and have been friends ever since!

Goodnight everyone!!!!!!!!

Ahh...Success!!!

We did Aiden's 8th fill tonight and everything went so great! There were no tears and absolutely no issues. Aiden even cracked me up because on the front expansion, he decided to smack me in the face with his Mum Mum (rice snack) as if to tell me to hurry up and get this over with.

I did not get a large amount of saline in but that was ok because we are at the end and I refuse to over do it. We have been keeping the incision area really clean and moisturized but I am not going to take any chances by pushing the skin too far. So, I put 30cc in the front and 20cc in the back. Aiden now has 430cc in the front and 450cc in the back. He is really looking huge!

 I am so proud of my sweet little baby and I am really happy that we only have a few more fills left! He is such a trooper and I am really excited to see him without his bubbles.

Check him out after 8 fills...

His little armrest at 430cc!

Back to playing right after his fill!

Some Halloween fun!

If you live in my area, come check out our garage sale on October 29th (this Saturday) from 7am-2pm. Let me know if you need my address! We have a lot of great stuff for sale and a portion of it will goes to Nevus Outreach!

Hope everyone has a Happy Halloween!

One Crazy Week

This week has been crazy. Let me fill you in on what has been going on...

On Monday, I called Dr. Bauer's office to talk to Mim about Aiden's incision area. We were having some slight issues with redness and a tiny amount of drainage coming from the ends of both the belly and back incision. Besides the drainage, this really hasn't been anything new but I wanted to be reassured that nothing else was going to come of this. Mim told me to keep the area really clean (more than usual) and continue with wet/dry dressings if any drainage continued. She said it wasn't too bad and that it was fine to go ahead and expand but to take it easy. They also decided to put him on an antibiotic for the remainder of expansion. I am not a huge fan of him being on antibiotics for that long but at the same time, I do not want the expanders or anything else to become infected so antibiotics it is. 

I planned on doing the expansion later in the day on Monday since we got the all clear but my plans did not work out. I have been battling with fevers off and on for a few weeks now as well as a cough and Monday was just not good. I couldn't get my fever to go down so I decided to head to the ER. I felt bad because my husband had made plans with a friend who is moving out of state but I really had no other choice at this point. Long story short, it was nothing major. They gave me a shot of antibiotics and some cough syrup to help me sleep. 

On Tuesday, I wasn't feeling all that great but it was our anniversary so I was determined to rest up and start feeling better. Michael and I had plans to stay at Grand Californian Hotel that night and since we couldn't cancel, we decided to still go. Before we left, we did Aiden's 7th fill. He was a little impatient with us but other than that, the fill went great. I only put in 30cc in each expander since I was told to take it easy but anything is better than nothing. His belly is now up to 400cc and the back has 430cc. He sure is looking big! 

I love when I capture pictures of him like this because it simply shows you that he is NOT bothered by this. He gets around like any other baby his age would. Sure, he has a little bit of trouble if the belly gets in his way but he picks himself up and moves right along. 

After doing the fill, Michael and I packed up and headed out! Aiden had a blast hanging solo with my mom while we tried to make the best of our evening. We did get to spend a little bit of time at the park and even ran into some good friends of ours! I was actually starting to feel better and we had a really good dinner at Napa Rose. Unfortunately, the rest of my night was not as good, as I battled another fever, but it was probably due to not resting as much as I should have that day. Nevertheless, we still had fun and I am so happy to have Michael in my life. 

The next few days were a little rough for me as I was still battling not feeling well but I managed. I am finally starting to come around today so I am happy about that. Aiden's incision area is slowly coming around to looking better so that's another good thing. Hopefully we can get at least three more fills in and our little superhero will be ready for surgery #2! 

Now I have to start getting ready for our garage sale next Saturday! We have decided to get rid of our storage center to help cut our expenses down. So, we are selling the stuff that won't fit in my parent's house...which is a lot! If you are in our area, come check it out from 7am-2pm on October 29th. A portion of the proceeds will be going to Nevus Outreach so its for a great cause! We will also be selling Aiden's cookbook so if you haven't picked up your copy, stop on over! 

Thanks again for everyone who has supported us through this! These next few weeks are going to fly by! Michael, Aiden and I will be heading back to Chicago three weeks from today! We are so excited to see results from round one! 

Finally Another Fill!

Last Thursday would have been another fill for Aiden but he was still coughing and Dr. Bauer wanted to make sure he was better before we did anything with the expanders. Aiden's stitches that were left in were also causing some issues so it was just best to leave it alone for a few more days. By Monday, he was in a much better place so we decided to attempt a fill after Michael got home from work.

We changed up the scenery a bit to help distract Aiden and made sure he had plenty of snacks and juice to keep him busy. For once, I did the belly expander first. This one always surprises me on how much we can get in. It already felt pretty firm but we managed to get in 50cc! That expander now has 375cc and I can't believe it!

The back expander went fine but we were only able to get in 30cc. I thought that was strange because it had been so soft for weeks now but I didn't force it because I knew how sensitive the area already was. Then a few minutes after filling it, the expander got really soft again. At first, I thought that maybe the expander was leaking so I emailed Dr. Bauer just in case. He assured me that everything is fine and that sometimes the expanders don't always act the way we want them to.

It's hard to believe that we are past half way there already. We only have about 4-5 fills left and then we will be back on a plane to get these bubbles out. I am glad that it went by so fast!

Check out his newest look....

375cc in belly, 400cc in back

Just after the fill...happy as can be!

Don't forget to get your copy of Aiden's cookbook before they are all gone!

A Little Setback...

I have been a little behind on the blogging so let me catch you up to speed.

Last week, we did Aiden's 5th fill. I was really nervous to do the fill after my last experience but I expected that. With that being said, I decided to change things up a bit. Instead of Michael holding Aiden, I changed it to my mom. If I did need any help pushing the syringe then Michael would be there to help.

I am happy to report that there were no issues and I didn't need help!There was a slight cry at first but I believe that it was more to do with him being tired and held down than in pain. The back expander took 90cc and still felt a little soft, but I knew there was NO WAY I was going over that number. I was very surprised that the belly expander took in 50cc because it felt firm to start with but it just goes to show how amazing these expanders can be. So, Aiden now has 370cc in the back and 325cc in the front. He is so HUGE...and we still have lots of filling left to do. Take a look at his growing bubbles...

325cc

370cc

After the fill, we went on with our day as usual. Over the course of the next couple of days, I noticed a problem. His stitches were red again in the back and now in the front too. Some of the areas looked really concerning so I emailed Dr. Bauer to see what he had to say.

Mim called me the next day and said that Dr. Bauer wanted the stitches to be removed because it seemed infected. One slight problem...we were out of town and wouldn't be back for a few days. Mim said that if we were comfortable enough then we could try removing them ourselves. GULP. Oh boy, this didn't sound fun. Dr. Bauer also called in an antibiotic for us to start when we got home. Unfortunately, we didn't have the right kind of tweezers with us so we had to wait until we got home to remove the stitches.

Fast forward to Monday. After arriving home, I noticed that Aiden was a little fussy. Then I felt his forehead and he was burning up. His temperature was 101.5. CRAP...I instantly thought it was the stitches and I felt bad that we hadn't removed them yet but then he started coughing a bit so I realized that it could be that he is just sick.

After giving him a cool bath and numbing the stitch area, we began removing them. This time, it was Michael's turn. I have never removed stitches and since I already do the fills, I didn't want Aiden associating me always with "the one who pokes at me." The first few went ok but Aiden was moving around too much and the stitches were tough to get out. After he started crying (in some cases, screaming...which was mainly from being tired and now not feeling well), we pulled the plug and waited until he fell asleep. It was no fun but Michael eventually found a way to make it work and we got most of the stitches out. The ends were just way too difficult for us to figure out so we decided to take him to our pediatrician the following day.

Unfortunately, the pediatrician didn't have much luck either. He was able to remove the last one on the belly expander so I was at least happy about that. He told us that Aiden had an ear infection but his lungs looked clear and that the coughing could just be a complication. So, I emailed Dr. Bauer to update him on the doctor appointment and he said that the remaining stitches will probably be fine because the the tension is gone from that area now. He also said that if Aiden was still sick on Thursday then we would have to skip his fill this week.

Yesterday would have been fill #6 but he was still not feeling well. Even though this is a little setback, I think it is good that the incision area has time to heal without the pressure of expanding more skin. Hopefully, Aiden will bounce back in next couple of days and we will be right back on track. On a happier note, the incision area is looking so much better since the beginning of the week so I am glad that the stitches were removed.

If you can believe it, we only have six more weeks from tomorrow before we will be flying back to Chicago and removing these bubbles! Then we can rest for a few months and start again.

Just another friendly reminder that we still have cookbooks left. If you would like a copy or know anyone who would, please let me know! Thanks and have a great weekend!

Fill #4

Well, I wish I could say that tonight's fill was just as easy as the rest of the fills but that certainly wasn't the case. We had a pretty long day to begin with. Aiden barely took a nap all day long and was pretty exhausted by the time Michael had arrived home.

We ate dinner while the lidocaine was numbing Aiden's ports and then cleaned up the kitchen before starting. Everything was prepared in advanced so all we had to do was get the Baby Mum Mum's for Aiden and get it started. I chose to do the back expander first. The needle went into the port and it was a smooth transition...no tears. Well, unfortunately sometimes the syringe is pretty difficult for me to push and I have to find some strength to get it to work. After about 20cc, I accidentally pulled back on the syringe and out came the needle and the screaming. It was awful. I felt TERRIBLE and of course started to cry. We settled him down (and ME too) and started over with clean supplies but when I went to put in the needle, he freaked out. Tears streaming down his face...it was heartbreaking. My mom, Michael and I all decided that 20cc was all we were going to get in. It was a disappointment because that expander probably could have taken at least 80cc.

I had to give myself a moment to pull myself together and do the belly expander. When I was ready, Aiden was looking at me and shaking his head no. CRAP! That was tough for me but I knew that he would not remember this after a few minutes so in I went. Tears came once again when the needle went in.  Luckily, he had a juice bottle this time and he calmed down. My mom held onto the needle this time because I was afraid the same thing was going to happen. I was shaking to death but was able to get in 40cc, which was good for that expander.

The belly expander is now up to 275cc and the back expander is at 280cc. Not what I had hoped for tonight (at least for the back) but I know that this stuff can happen and that I can still do this. I am so thankful for my mommy friends who have gone through expansions because they helped assure me that everything is fine and I did the best I could. Thank you Christine and Amie for talking me through this.

I did email Dr. Bauer to see if we can possibly try the back again in a few days but if not, hopefully we can catch up the following week. Even though it did scare me, it was just a little bump in our nevus journey and I know that this is still completely manageable. I know that I let my emotions get the best of me but I have put it behind me.

Luckily, Aiden did go to bed EARLY tonight.

Belly 275cc

Back 280cc

Fill # 3

A week has gone by already so that means it was time for another fill today. This is Aiden's third fill but the second at home. I felt a lot better this time about doing the fill without a handy nurse to help us out if needed.

We had originally planned on doing the fill in the morning before Michael left for work, but Aiden's prescription of the Lidocaine cream (this helps numb his ports) wasn't going to be in until after noon, so we had a change of plans. Since Michael is closing tonight, we decided that he would take an extended lunch and come home around 2:30. I had everything ready to go before he arrived so that he could get back to work as quickly as possible.

With the rice cakes in hand, we were ready to begin! I decided to do the back expander again first this time. This expander had softened up quite a bit, so I was prepared to get more than 60cc in this time. I had a difficult time pushing the syringe to get the saline in but I was able to get in a total of 70cc! Aiden didn't even flinch...he was too busy eating his snack! I probably could have gotten a little more in but I am playing the cautious card. His stitches are finally healing from the redness, so I didn't want to cause too much pressure to that area.

Then it was time for the front expander. I prepared for a cry because of last time, but to my surprise there was not a single peep. I was able to get in 60cc and I was happy with that result. He was in such a great mood that he even let me snap a few pictures before wanting to get down! I hope every fill is this smooth.

I can't believe that we are scheduled to do this 9 more times. He already looks so big to me. He is really going to have a difficult time crawling around towards the end but I know that this will go by so fast. So far, this process is going great so I can only hope that he continues to stay healthy.

Take a look at his bubbles now...

Back expander 260cc

Belly expander 235cc

Side view

I am pretty happy with the results so far. It is tough watching them go through this but at the end of the day, I would rather it be tough on me than tough on him. Aiden goes on with his days like nothing is different and that is exactly how I want it to be.

On another note, Aiden's second shipment of cookbooks have arrived! Michael and I can't begin to thank everyone for all the support so far. You all have lifted such a huge amount of weight from our shoulders! If you have yet to get your copy, please let me know! If you live in my area, we will find a time to meet up with you. If you are out of town, the book is available to order on this website! With Christmas around the corner, these cookbooks also make a great gift. Help us spread the word! Thanks again!

10 months old and First Fill At Home

Today marked two big days for Aiden. The first one being that he turned 10 months old today. I can't believe that time has flown by this fast. It certainly doesn't feel like he has been with us for ten months now but I love every minute of it. He is such a busy little guy...always on the move. He has mastered crawling and pulling himself up. Today, he even stood alone for a spilt second. I will admit that this makes me nervous with expanders in but I have been told several times that it takes a lot to hurt the expanders. Still, the mom in me is very cautious. He also is doing really well with eating solid food and tries new things all the time. Aiden can say "dada", sometimes "mama" and what we think is "hi." This week, two front teeth popped through, making it a total of four teeth so far. Its amazing watching your little one grow up!

Today also marked Aiden's first fill at home...all by ourselves with no nurse to guide us. With that being said, I was WAY more nervous than I was a week ago. My nerves didn't really set in though until Michael and Aiden came to our little workstation. My heart was pounding so fast and I must have read the directions TEN times. I knew I had to get it over with so I took a deep breath and started the routine of cleaning the area and going in with the needle. I know, it sounds bad but at the end of the day, it is doable. If it wasn't, I am 100% positive that Dr. Bauer would not allow us to do this at home.

We did the back expander first. Michael held Aiden in his lap while my mom stood by for extra assistance. When I put in the needle, he didn't even flinch...so I was really excited about this because last time he cried pretty immediately. It was a little hard to push the syringe but eventually I got a pretty good handle on it. I easily put in 60cc. Probably could have done a little more but the nurses had told me to take it easy the first few fills.

Then we went to do the front expander. I felt a little easier doing this one since I did the belly last time at Dr. Bauer's office. However, when I put in the needle, he cried. Some of the cream had slipped away from the port so I pretty much figured that it didn't quite numb all the way. My eyes instantly started to tear up. I felt bad but then I thought it could be a lot worse...he could be screaming his head off. My mom handed him another rice cake and he settled down. This time, it was a little more difficult to push the syringe but I managed to also get in 60cc!

What a relief! After everything was all over, Aiden went back to his usual happy self as if nothing had occurred. I am just glad that its over with! Now the belly expander has 175cc and the back expander has 190cc. He already looks so HUGE to me that I am having a hard time picturing what he will look like towards the end but so far everything is going great. The only minor complication that we have is that some of the stitches on his back have become red and puffy (they were never like this before) but for now, I am told to continue our normal routine with the Aquaphor. Mim said that if its gets worse then they may consider removing the sutures. Not too concerned but we shall see what happens.

His growing bubbles...

Belly at 175cc

Back at 190cc

Back to playing!

And crawling...funny how the belly one looks larger but is actually the smaller one! 

Happy 10 Months to my sweet little boy

Leaky Drain & Teaching Session

Everything went pretty smoothly with Aiden's surgery but we did have one very minor thing occur...a leaky drain. It happened about six days after surgery. When Michael and I had gone to do a dressing change, I noticed that there was a little area that looked like it had been bleeding. I didn't think much of it at first as it was a very small area. Then I started noticing that one of the drain tubes wasn't filling up very much. I also didn't think too much of this because that side had always been less than the other one so I thought maybe it was done draining.

Well, the next day, I had to drive Michael to the airport. We had planned on doing the dressing change prior to him leaving but it just didn't work out. When we got back to the hotel, I noticed that the side of his pajamas was a little wet. So, I took a look at the dressing and he was SOAKED in fluid. I didn't panic because some of the other moms had told me that this had happened to them, so I emailed Dr. Bauer to see what he would advise me to do.

In the meantime, I had to come up with a different way to do the dressing so that it didn't keep leaking through clothes. Well, Aiden wasn't cooperating very well so I was very happy that my good friend, Nadia, was still at the hotel to help me out. She was a great distraction for Aiden and I was able to concoct a better solution until I heard word from the doctor.

Dr. Bauer emailed me back within a few hours (yes, he is that awesome to email back on the weekends) and told me that as long as it is draining then it really doesn't matter where its draining. To be honest, I wasn't 100% loving this answer because I was all by myself for another full day and it was difficult to change the dressing on my own. Normally, I would only have to change the dressing once but because it was leaking so much fluid out, I had to do it more frequently.

So the next morning, I decided to call Dr. Bauer's nurse, Mim, to see what she would say. The fluid was going down at this point so she said I could either come in or wait until Thursday when I was scheduled to have the lesson on expansion. I told her that I needed to come in anyways because I was running out of supplies due to changing it so often. So she told me to come on in. I headed over in the afternoon and had the one leaking drain pulled. Aiden and I also got to meet Susan, Dr. Bauer's other nurse, who is just as fabulous as Mim is. Aiden loved both of them too! I was much happier!

Here is what the drains looked like. The one closer to his back is the one that got pulled early.

A few days after the drain incident, Aiden, my mom and I were back at Dr. Bauer's office. This time was to learn how to do the expansion. I had been told that the nurse would do one and that I would do the other one. This caused me to have a lot of anxiety that morning. I felt sick to my stomach as I drove over there...I just didn't want to do this but I knew I had to.

There was no turning back now so I tried to not focus on it. I remember looking at my mom with this complete look of fear and wishing we were elsewhere. However, I will tell you that I had prepared myself for something much worse. Once Susan started showing me the materials, I felt a little bit better. I had envisioned this gigantic needle for some reason and I HATE needles but after I saw it, I thought "I can do this...maybe."

We had put on the lidocaine for numbing before we left the hotel, so Aiden was all set to go. First, you get all your supplies ready to go and make sure everything is clean. Then you take the needle (which is attached to a syringe filled with saline) and insert into the center of the port. The port is located under the skin in an area close to the location of the expander. So, Aiden has one in his upper chest and another one down by the top of his diaper. Susan was going to have me fill the back one but then decided that it may be easier for me to try the chest area because she felt that the port was a better example for a first time learner. I was a little uneasy about this because I knew that Aiden would be looking right at me while I stuck this needle in but I needed to get used to that at some point anyways. Susan reassured me that I would be fine.

Susan went first and Aiden cried for a bit when the needle went it. She said that it was probably because the port was a little bruised and sore and not because he wasn't numb. I felt a huge amount of relief after watching her do it. She had a good way of teaching me with her calm attitude. She was able to get in 40cc. When it was my turn, I took a deep breath and in I went. It took less than a second to be in the port and within a few minutes, I also had 40cc in. Susan congratulated me on what a great job I did. That was a even bigger amount of relief lifted from me because I really didn't think I was going to do good at all. She allowed me to go home with a little bit of confidence to be able to accomplish this 11 more times at home. Hopefully that will be the case!

The belly expander now has 115cc in and the back expander has 130cc! Check out his little bubbles!

White blob is the numbing cream!

Back expander with 130cc

Belly expander with 115cc

Susan pulling the other drain out! 

Aiden with Mim

Finally a bath! 

Now, every week (as long as there are no issues) we will fill the expanders and watch them grow. Thanks everyone for following along and supporting us along the way!

And...I got word today that my next shipment of cookbooks is shipping TOMORROW!!!!!!!!!!! So exciting! If you still need a copy or are interested in helping me sell these next 400 copies, let me know! They make great gifts and with Christmas not too far behind us, it will be perfect!!!!!!!! Thanks again everyone who has already supported Aiden through the cookbook. It has helped out so much and I know it will continue to help out with the upcoming surgeries in Aiden's future!

Playtime in Chicago

After a few tough days after surgery, Aiden was coming around so we decided to make the best of our trip by getting out of the hotel and doing something fun! It was actually better for Aiden to be out looking at stuff rather than being stuck in the hotel.

Our first venture downtown was quite the adventure. We had decided to hang out with the Carraro family (other nevus family staying at the hotel) and go to the John Hancock Observatory. We had briefly discussed going the night before but nothing was set in stone. So in the morning, I messaged them letting them know that we would meet them at the train station. I never heard back from them, which I thought was odd but we still headed out. We were getting close to the train station and I noticed that I had a text message. It was Nadia....they had woke up LATE. In the meantime, we were trying to find a place to park and wasn't having any luck at all. Since I knew the other family was running late, we weren't rushing around too much trying to park. It's now 10:26...the time that the train is supposed to depart and its very apparent that we won't be catching this train. Then I get a message from Nadia that the train is late and they are wondering where we are at. OMG....the irony was hysterical. So, the family that woke up 10 minutes before they were supposed to leave makes the train while MY family misses the train! Then to add to everything, the next train doesn't leave until 11:26! It gave us a good laugh (although at the time, Michael wasn't laughing) and we joked about it for the rest of the day.

By the time we arrived in downtown Chicago, we had no idea where exactly our friends were so we started walking in the direction we needed to go. Why we didn't take a taxi to the John Hancock Observatory is beyond me but we didn't....so we ended up walking about 1.5 miles to our destination. We actually ended up making really good time because we were only about 20 minutes behind our friends. We ate some lunch at the Water Tower and then headed over to John Hancock. The views were pretty awesome and we all enjoyed ourselves very much! We actually decided to walk back to the train station to catch some of the views of Chicago that we missed on our first trip. It went much faster as a group! The only thing we completely forgot about was a group picture of all of us. Bummer!

The next day, Michael and I ventured downtown again and went to the Shedd Aquarium. We still took the train but didn't miss it this time! We did, however, take a taxi! This aquarium was pretty awesome. Aiden was so excited to look at everything and it made me so happy to see him doing so well out on the town. After we spent a majority of the day here, we went to eat at Gino's East for some traditional deep dish pizza. It was so yummy that we even brought some back to the hotel for our friends at the hotel.

On Michael's last day with us, we went out to breakfast (in the pouring rain) at Walker Bros, which was FANTASTIC and then took a road trip about an hour away from us to meet the King family, another nevus family. It was Austin's 4th birthday party! He is a very special little boy and it was great to finally get to meet him and all of his family. They are all so awesome!

The week went by so fast and before we knew it, Michael was flying back home and we were waiting for my family to arrive. My mom was flying in with my grandma while my cousin was driving in from Michigan with her family(Thanks so much to Grandma, Aunt Karen, Terra, Pete, Mia, Chase & Mateo for coming down). We had a blast with them. The rain changed our plans for one of the days so we made the most of the mall! The other day we went to the Lincoln Park Zoo. If any of you are ever in Chicago, you should definitely visit this zoo. Its completely free to get in (except for parking) and its actually a very large zoo with a huge variety of animals. It was super hot and humid the day we went so we didn't get to explore very much of the zoo but the time we spent was a lot of fun! I definitely would love to go back!

After the zoo, we said goodbye to my family from Michigan as they headed back home and then killed some time before meeting up with a good friend of mine, Jennifer Wolohan. We went to grade school together back when I lived in Michigan and she nows lives in Chicago! It was so much fun catching up with her and her husband, Patrick. She even had my pictures for me that she took back in June for us. She is an AMAZING photographer. Check her website out at www.photographie51.com!!!!!!

I was so happy to be able to turn our long trip to Chicago into a little bit of fun. The Windy City is pretty cool! Here are some pictures of the fun times we had...

Looking out the window at the John Hancock Observatory

Aiden enjoyed looking at his reflection here!

At the Aquarium...of course Aiden was asleep when we decided to take this picture!

Austin at his birthday party! 

Mateo and Aiden 

Mia and Chase at the zoo

Eating at Gino's East! He loves his snacks!