"Fun" Fill Thursday

Here we are already at day ten past Aiden's surgery. This means time for a fill. Since we had such a long gap between rounds, it seemed like we were starting from scratch, except without our fabulous nurses to help guide the way. However, once I started gathering the supplies, everything started coming back to me. Now that Aiden is older and more aware of what is going on, we are trying to make the fills as "fun' as possible. With "fun" really meaning...DISTRACTING one busy toddler from paying attention from what we are doing to his bubbles. 

First step is to bring out the handy dandy iPad. Next step is to apply lidocaine while watching Doc McStuffins. I know, how appropriate right? Aiden was not all that fond of me putting the lidocaine on and sealing it with some press n seal to make sure it stays directly on the port area. Luckily, once I put his shirt on, he seemed ok, minus some occasional moving around to get down from his high chair. The numbing cream must sit for at least 45 minutes. A fellow nevus mom today mentioned how she thinks the waiting before the fill is actually harder than doing the fill itself. Yup! I would have to agree that for ME it is definitely harder and my anxiety levels did indeed build as we got closer and closer but my nerves practically dropped once we started. 

Next step is to help Aiden along with this 45 minutes by giving him a sucker! He sure did enjoy that! Next time though, I think I will hold off on the sucker a little bit longer because he finished it too fast. Ok, so now its finally fill time. I did all the fills last time and I wanted to continue doing them this time too, so we sat Aiden in Michael's lap and my mom hung around to help distract. The most important step is this next one...keep his eyes on the iPad so he doesn't see what Mommy is about to do. Oh and throw in his suckie and blankie for comfort! Can't forget that! 

I decided to fill his lower left chest expander first. I felt a little nervous but took a deep breath and put the needle in. Not one single peep from Aiden. That was a relief and I thought this could actually be ok BUT I still had two more fills to do so I wasn't holding my breath. Since this is the first fill, I was instructed to take it easy so I put 40cc, making the total now at 110cc. 

I then moved on to the back expander since that port is in the same area as the one I just did...on his back.  I cleaned the lidocaine off, applied alcohol swab, let area dry, applied chlorapep swab and he flinched. DARN. Not going to get off with flying colors again. After sanitizing my hands, in went the needle. He did cry for a little bit but after talking to him and telling him we are just filling his bubbles, he was ok. I was envisioning a lot worse from the beginning so this wasn't too terrible. I put in 20cc, making the total 55cc. 

Now time for the third and final bubble in his upper right chest. This one I am not all that fond of for a few reasons. 1. His port is in his arm and toddlers do not enjoy having their arm held down. 2. This expander is slightly purplish in color, not anything to really worry about right now but I want to be extra cautious on filling this one up just in case. As predicted, he didn't like us touching his arm. He did let out some crocodile tears which I hate but since I wasn't putting much in, it was over fast and he was fine. Honestly, I believe it was just fear because he didn't cry or flinch when the needle went it. I only put in 20cc, although it could have taken a little more, but we can make up for it in the weeks to come once its a more normal color like the other two. All in all, I am happy with the first fill and I have complete confidence that we can continue to make them be not so bad. 

These bubbles are going to start looking pretty big early on! Here are the newest pictures of his bubbles. 

Upper right chest at 55cc and Lower left chest at 110cc

Back at 55cc

I am so glad this first fill is over and one with. Now we get to enjoy the week until the next fill! 

Surgery # 4

 Hello ALL!

Well, we are now a little over a week since Aiden had surgery # 4 to get his bubbles. I tried to blog while in Chicago but it didn't work out so I will catch you guys up to speed with how everything went. The weeks leading up to the surgery were actually ok for me. I had already spent enough time building up anxiety about it in July, when we were originally scheduled but delayed due to Aiden's health at the time. We were so ready to get on that plane and get this started.

Our flight was good and it didn't take us too long to get settled into the routine we have when we go to Chicago....check into hotel, grab a bite to eat, grocery shop for the week and organize the room. This is why we fly in two days before surgery...it is simply easier for us to settle in and then have a day to mentally prepare for the dreaded surgery day.

The day before surgery, we met up with the Layland Family, who we met at the conference and just so happen to live in Illinois! We are both members to the Shedd Aquarium so we decided that would be a fun place for us to hang out and the kids to have a blast. RG and Amy's oldest daughter, Ryleigh (2.5 years), is the perfect age to hang with Aiden. They were so adorable! Even held hands for awhile and practically copied everything the other did.  They also have a precious little baby, Emily, who will start her nevus removal journey in November when she is six months old. Aiden was a little jealous when I was holding Emily but quickly moved onto another subject matter! After a few hours at the aquarium, we went outside and watched a little bit of the air show that was going on. It was pretty cool! We had such a blast hanging out with them and its nice to know that we can hang out again the next time we are in Chicago!

Aiden and Ryleigh having a blast at the water table!

On the drive back to the hotel, that's when the dreadful anxiety came into play. Luckily, this time, it was way better managed because I knew what to expect and that even though it may be tough, it is a short amount of time in our life and we will power through it. Once we were back in the hotel, I pulled out Aiden's superhero cape so that I wouldn't forget it in the morning and Aiden looked at me with the biggest blue eyes I had EVER seen and said "OH WOW." I could have cried. It's hard to explain the realm of emotion that hit me there. I know there are plenty of you moms out there who can relate to how that made me feel. He ended up wearing it for the majority of the night.

Despite having to get up early, I really do love being first on the surgery schedule. The fasting is easier, the hospital is pretty much to yourselves when you get there and you don't have to worry about being pushed back on the surgery schedule. So, on Monday, August 20th, we were up at 5am to get ready to head to the hospital. Aiden did a lot better than I expected while waiting to be taken back so that made things a lot easier. He didn't really like Dr. Bauer touching him to show us what his plan was but other than that, he was good. Dr. Bauer told us for sure that we would get three expander's. GULP. I knew it would be fine, it was just difficult to think about doing three injections every week instead of two. Dr. Bauer also said he would do a partial excision on the satellite on his left leg that bothered us due to the texture. After seeing Dr. Bauer, Dr. Gerber came in and explained that he would place the tubes in about five minutes time and that all we would need to do was some ear drops in his ears for a few days.

Being my best little superhero

Checking out his cool new "beep beeps" 

Aiden and Mommy

A smile! 

Daddy trying to read to Aiden! 

Shortly after that, Aiden was whisked away to the surgery room and off we were to wait. Thanks to the versed medication they give him to help ease his mind when they take him, he did great! Dr. Gerber seriously came out five minutes later and said he was done with the tubes. WOW, he wasn't kidding! Michael and I stayed busy the remainder of the time until the last twenty minutes. Those were tough. Just when I thought I was going to lose my mind watching the clock, there comes Dr. Bauer! He said everything had went great. He placed a 500cc expander in his lower left chest, a 350cc expander in his upper right chest and a 250cc expander in his back. He also told us that he filled them up with 70cc in the lower left chest expander and 35cc in the other two so we are off to a great start! He also was able to excise the satellite and would finish it during the next surgery. Phew! Its always great to hear that surgery went great.

Now, normally, they come and get us a few minutes after we speak to Dr. Bauer so we can see him. Well, ten minutes go by and nothing. I wasn't too concerned because he may not have woken up yet so we continue to wait. And wait and wait and wait. It was a very long 45 minutes of waiting. My gut told me that things were probably not going so well. Sadly, I was right. Aiden was having a rough time and to keep from upsetting us, they waited until he was a little more calm to call us back. As much torture as that 45 minutes was, it was the right call because it is tough enough to see them in pain, right out of surgery, but to watch them be inconsolable is a whole other level. When I was finally able to hold him, the nurse warned me that he was holding his breath while crying but that he was ok. That part was not easy to watch. This was definitely going to be tougher than the first time. Not only is he older now and more aware but he has three expander's, stitches in his leg and tubes placed. This was the first surgery that we needed the Tylenol with codeine but he really did need something more than the regular Tylenol and Motrin.

Michael and I took turns holding him and keeping him calm. It wasn't easy. I was being strong though because that is what he needed from me. We could not get him to drink anything so we tried a Popsicle, which did work. Shortly after that, we tried some baby food, which he did ok with and was able to keep it down. Still refused to drink anything and hadn't had a wet diaper yet so I was cautious to leave the hospital just yet. Hours go by and although he won't drink anything still, we were able to get another Popsicle down and he eventually had a wet diaper. We figured that it would be easier to have him back at the hotel so that he wouldn't be so afraid when the nurses came into check on him so we left at around 6:15pm.

I think probably the hardest part was picking him up. There was literally NO good way to pick him up. We tried every combination we could think of but there was too many areas that were sore so we didn't pick him up unless we absolutely needed to. Another hard part was the insane shaking that would come when we did have to pick him up. He was completely motionless sitting on the couch, watching movies but at least some of the crying has decreased now that we were away from nurses and anything else foreign. It was a very long day. Exhaustion was definitely an understatement.

The next day we went to see Mim at Dr. Bauer's office to get a fresh dressing and see what we are dealing with. He was definitely happy to have all that itchy gauze off of him and luckily, he was quite content watching a show on the iPhone, which made Mim's job a lot easier. One of the expander's did look slightly bruised but Mim assured us that was normal but to keep an eye on it and fill cautiously for the first few weeks. His ports were also bruised but that was something we had dealt with before so we knew that would go down as the days went on. Everything else looked great. When she revealed the leg satellite, I couldn't believe it. He said it was a partial excision but seriously, 98% is gone. It is really strange to look down and see basically a stitch and not a nevus. Aiden still calls it his spot though.

Two of his three bubbles! 

The back bubble. Although it can barely be seen near the arm.

His leg as a baby!

His leg now! Whats left can only be seen up close under the stitches. The length of the scar will also lessen when he removes the small amount that is left. 

The next few days after surgery were still rough but we managed. We did find it easier to get out of the hotel and give Aiden something to look at versus watching him look so sad on the couch. Despite surgery, we try to have fun and bring good memories into our trips. We made our usual trip to Gurnee Mills, which was probably the easiest shopping trip that we have ever had with Aiden as a toddler because he just sat there and looked around without one complaint. In that moment though, Michael and I were desperate to see a change. We also went to the Lincoln Park Zoo which is always nice and it wasn't too hot so that made it more enjoyable. We strolled down Navy Pier for the first time and Aiden enjoyed looking at the boats. It was here that we saw a slight change in him. He had been sitting motionless in his stroller for days but he actually moved himself to a sitting position

Finally by day four, we saw a new kid and were so relieved! That day, we strolled down Michigan Avenue, visited The Bean and looked in all sorts of shops. He absolutely loved watching the cars, trucks, taxi's and buses drive by! On our last day in Chicago, we stopped by Dr. Gerber's office to check out his ears which were clear and then went to Dr. Bauer's office to get one more look at his incisions before flying home. And of course to get all the supplies we need for the expansions at home.

By the end of the trip, we were so ready to get back home and get back into a routine. It is a little hard to leave though because we can never predict the potential problems that could occur during the next few months. Luckily, we feel relieved by the simple fact that Dr. Bauer knows exactly how to guide us through anything miles away from where he is.

For any moms out there who are currently deciding to remove and wondering if you are starting too young, please let me assure you that this is way easier when they are younger. It was a huge difference with him being older and more aware. Younger also means that the memories will only be yours, not theirs.

I can't thank everyone enough for the support we received while we were away in Chicago. It really helps! Stay tuned as we continue round #2!

Back in the Swing of Things...

Since Aiden's last surgery in February to clear that infection, we have been busy bee's! We wanted to soak in as much as possible before we started this all over again. We kept ourselves busy with fun play dates with several friends, many trips to Disneyland, a few to the zoo, a trip to Michigan and last but not least, the Nevus Outreach Conference! We are so glad to have made it to our very first Conference because it was AMAZING!!! An experience, that only those who attend can understand. Thank you so much to all of you that donated to Nevus Outreach for Aiden's birthday party so that we could attend! It will be something we hope to attend for many more years to come and we hope that it will impact Aiden the same way it did for us.

The only thing that was a bummer about the conference was that we knew the end meant that it's time to get back in the swing of things with Aiden's surgical journey. Since we had such a long break, it almost felt like it was over but of course, it isn't. We had the pleasure of seeing Dr. Bauer at the conference and his wonderful staff, Mim, Susan, and Kristi. He said that Aiden had healed up well (phew) and that he would place 2-3 expanders this time. I asked if he thought that he would get the rest this time and he didn't seem to think so due to the sensitive nature of the arm. I wasn't shocked by this because he had told us this in the past and all we want for Aiden is the best result for his future. With Dr. Bauer, we have that so we don't question it.

So, here we sit, one week until surgery #4 on July 23rd. My emotions are so much stronger than they were going into round one. There is less anxiety, less stress and unfortunately, familiarity of what to expect. Of course, I still have some of those feelings but that is mainly because he is older and much more aware of his surroundings and that does make me sad BUT my little guy is tough, so I'll be strong for him.

This time will be a little different than usual because we will see an ENT doctor prior to having surgery done. Aiden has had four ear infections throughout his short little life and the last two were about a month apart so there is some concern that he will continue to get ear infections, especially when expanders are in. So, the ENT will examine him and hopefully put tubes in to help with this issue. They normally do tubes once they have had six ear infections but Aiden's case is different due to the surgeries. I know of a few others who had this done as well and it was worth it so I am hoping they get placed. If they do get placed, it will just be right before Dr. Bauer does his procedure.

Please keep Aiden in your thoughts and hope that the surgery and recovery is smooth. I will keep you posted as much as I can! We should be the first surgery at 7:30am, which is easier for us and easier on Aiden with the fasting but we will know for sure when the hospital calls us to confirm.

We still have cookbooks available for sale and we are reducing the price in hopes to sell what we have left to continue to help us cover the expenses of medical bills and traveling expenses to Chicago. The cookbooks are now $15! If you don't have a copy and want one, let me know or order directly from the blog. Or maybe you know someone that might want one or even someone who might be willing to help me sell some...please pass the word on if you do. I also have a few other fundraising ideas that we might do during Aiden's expansion so I will keep you informed in case you would like to participate! We continue to be so grateful for everyone that has helped so far, its been such a huge help!

Just Aiden enjoying summer!

Aiden's "FUN"draiser at Pump it Up

Back in January, Aiden and I went to Pump it Up for Rachel's first birthday party. She is the daughter to my very good friend, Shannon. When it came time to open the gifts, Shannon sat down and started to tear up. Well, in that moment, I just knew something was going on and that Aiden had everything to do with it. She had asked her guests to donate money for Aiden's surgeries instead of gifts for her daughter. I was very surprised as I had NO idea. I couldn't have been more grateful for the $400 they raised for Aiden. We have had nothing but wonderful support from our friends and family to help us get through this journey with Aiden.

One of the workers there decided to go to their manager and tell them about Aiden's story. They immediately wanted to help us out. They told me that they would host an event on a weeknight and only charge $10 per child. This would include unlimited use of both arena's, pizza, and drinks. I thought this would be such a fun way to fundraise for Aiden and help bring awareness to his rare skin condition.

I was all set and ready to pick a date sometime in February until I got the email from Dr. Bauer (literally two days later) telling me that he thought it would be best to excise the infection that we had been battling for months. What a blessing in disguise this opportunity was for us! With this unexpected surgery and our cookbooks slowing down in sales, we really need the extra support so this was THE perfect opportunity for us at this time.

After we got home from Chicago, I was finally able to pick a date! So, I am so excited to announce that on March 29th from 5:30-7:30pm, Pump it Up in Murrieta is having a "FUN"draiser for Aiden. Again it will ONLY COST $10 per child so if you have kids, please consider coming and be sure to tell your friends. Space is limited so PREPAID reservations are required. Please call 951-677-1933 today and reserve your spot!

If you have never been to Pump it Up, check them out on their website below.

Pump It Up

We will also have our cookbooks for sale at the event. If you are unable to attend and don't have a cookbook yet or want one for a gift, please let me know.

Thanks again for all the support everyone has shown thus far! And many thanks to SHANNON because we never would have had this opportunity at Pump it Up without you.

Surgery #3

We made it to Chicago on Sunday for surgery #3. I never would have thought that this surgery would be to remove an infection but here we are. As much as I hate surgery, I was relieved of this one. Three months of dressing changes for this mommy is ENOUGH, and I found it heartbreaking every time he would just sit there, put his hands up and watch me take care of the infection like it was routine.

Everything leading up to today's surgery was a little chaotic. Last night, I hadn't heard from the hospital and I thought that was strange so I decided to give them a call. Well, they were never going to call because we were not on the schedule. GULP. I urgently checked my email to make sure I didn't mess up but surgery was definitely supposed to be on the 21st. So I called Dr. Bauer, and he said the same thing, "he isn't on my schedule either, in fact I'm not even in the operating room tomorrow." Oh boy! Of course, Dr. Bauer assured me that this would happen sometime before I left but that he couldnt guarantee which day it would be on. He asked me to fast Aiden at 6am and then at 8:30, call Kristi, and see if the hospital has room for us around noon as he didn't have much going on tomorrow.

It was a little stressful at first but after talking to Dr. Bauer, I wasn't even worried. I knew it would work out. So, I woke Aiden up at 6 am and gave him a bottle and he went right back to sleep. Kristi called me around 8:15, letting me know that we were on the schedule for noon and to be at the hospital at 11. Bless her heart, she felt terrible about the mistake and I told her not to worry, we all make mistakes. Luckily, Aiden hasn't been a huge breakfast eater lately so fasting him was not all that bad. We finished getting ready and headed to the hospital at 10:30.

Of course when we get to hospital, we weren't on the list! I just laughed. I figured that would be the case so they just made a quick phone call upstairs to make sure we were supposed to be there. Aiden wasn't too sure where he was but he didn't seem to care all that much. Instead he was waving and saying hi to everyone. It wasn't until we put his gown on and the nurse came in that he was a little confused. He still didn't cry though which was good since last time he did. He walked around the room with his little cape on and was cracking my mom and I up. Dr. Bauer came in shortly before taking him back to surgery and told us that this should be a simple procedure and that clearing this up will be easier in the future.

This time we decided to give him the versed to make it a little easier when they take him from us. It was hilarious! He was really relaxed and when we said goodbye, he slowly waved and seemed fine! It's odd to say this but I'm so comfortable watching him go through those surgery doors. He is in really good hands and everyone is so sweet and nice. My absoulte favorite recovery nurse, Mary, is so awesome! She came out and gave me a hug and talked to me about what we were doing. So nice that she remembers us as she must see so many people everyday.

Dr. Bauer said surgery would take about an hour so my mom and I headed to grab some lunch in the cafeteria. It ended up being a little over an hour but it did go by fast. He said that everything went well! We headed back to recovery to see Aiden and he was asleep. He woke up a bit and cried but was shortly back to sleep and soon enough we were moved to our private room. He sparked up fast and started drinking some pedialyte. Shortly after that he had some toddler formula and then some food and some more food. This was unusual, as he normally doesn't want to eat so I knew right away this was going to be an easy recovery. We only stayed a few hours and headed back to the hotel.

He is doing great and I'm glad to have this over with. We will see Mim and Susan on Thursday for a dressing change and then in a couple of weeks, remove the stitches. Thanks for all the support I received today! It's always so nice to have so many people carrying about my sweet little boy.

Rolling with the Punches

Well, I have some news. The last time I updated the blog, we were still dealing with the infection on his back. Guess what?? We are STILL dealing with this. I wish that wasn't the case but it is what it is.

I sent my weekly email over to Dr. Bauer earlier this week to show him the progress. I was expecting the same response of sticking with the routine that I have been doing. I thought wrong. He said that although it is looking better, it is taking unusually long at this point to heal and he thinks it would be best to excise the infection and close the wound. He understands that it isn't easy to come out to Chicago on such short notice but he feels that taking care of this now is better so that we have healthy tissue when we start the next round of  expansion. It makes sense as we certainly don't want to go through another infection again but this extra surgery was unexpected. We are now looking at definitely five surgeries plus whatever reconstruction surgeries he will need after the nevus is removed.

My trust in Dr. Bauer is so high that we are just rolling with the punches. It wasn't a case of "emergency" to fly out there right away so Dr. Bauer told his assistant to fit us in the next available date which happens to be February 21st. Due to the short notice, Michael will be unable to come with me so my mom will be coming along.

The surgery will not be that big of a deal as there will be little to no care afterwards beside the activity restrictions, which will be a little hard. Even though it sucks to put my son through another surgery, I will be glad to have this infection over with and be healed. Then we can really enjoy the next five months before round two begins. And I can finally write that post that round one is OVER.

I am happy to report that we are lucky enough to be able to see our really good friends from Canada that we met on our first trip to Chicago!!! This is definitely a bonus!

Thank you all for continuing to support Aiden. I will keep you guys posted on how his surgery goes and be sure to stay tuned as we have an exciting fundraiser coming up for Aiden! Details to come soon!

We still have cookbooks available for sale if anyone wants a copy to help out with our surgery/travel expenses! Order on the blog today or we can meet up somewhere if you live close! Again, we thank all of you that have contributed to helping Aiden! It has helped this process become a lot less stressful and we are touched by the love you have shown!

My handsome little guy! 

The Power of a Blog

Before having Aiden, I was never really in to reading blogs and I most certainly would have never saw myself writing one of my own. With that being said, I actually find having a blog to be refreshing for my situation and I have come to enjoy it. I still do not spend hours reading blogs but I have come to find several that I enjoy reading and some that I feel empowered to pass on to those that read my blog.

Yesterday, a friend of mine from my support group posted a blog about a baby who was born in her town with a rare skin condition called Harlequin Ichthyosis. Of course, I am immediately hooked and interested to learn about this. Well, as soon as I start reading, I realize that I am completely unprepared to read this story. This story of this sweet baby girl named Brenna is heartbreaking to say the least. She is close to six weeks old and has endured things in her life that are so hard to wrap my head around. I found her story so compelling that I read every single post in pretty much one sitting. It's hard to explain the emotions that poured through me while reading this so I encourage you to check out the story yourself. Just read the very first post that this mother wrote about her sweet baby girl and trust me, you will want to read the rest. I do recommend bringing out your kleenex though because it is a tough read but inspiring and hopeful at the same time.

Please feel free to share her story with your friends and family. Just like with Aiden's condition, the more people who know about Brenna and her condition, the better off all of us will be.

Here is the link...

Blessed by Brenna