That's a WRAP!!!!!

Tomorrow, Michael, Aiden and I will make the trip back to Chicago for surgery to remove his bubbles. I can't believe its here already! What amazes me the most with these kids that go through this process is that it doesn't phase them. They get around just fine and can pretty much do all the normal things an average kid their age can do. The bubbles become a part of who they are for a few months and to them its no big deal.

We only managed to get in one more fill on the back expander but that's ok because in that last fill we did, we made it past 750cc which is a first for us! We haven't been able to exceed the size of an expander in the past so this was definitely exciting! Dr. Bauer told us that things looked great and that there was no point in doing another fill and chancing the skin to become stressed. So the final totals for the bubbles are 770cc in the back and 155cc in the shoulder! I've been extremely proud with how well Aiden has done this entire round with the fills. Not a single tear shed because he knows it doesn't hurt and that its going to be fast. Now granted, he was never jumping up and down to fill up his bubbles but as soon as we sat him down in Daddy's lap, he never once complained! He is so brave and definitely my hero for all that he has been through.

It hasn't been smooth sailing for us this round but we have survived and it could have been a whole lot worse. We have managed irritated incisions, antibiotics for months, a hole and a bruised expander that couldn't be filled up to its capacity. With all that being said, we have some really great volume in his bubbles and should have another amazing surgery by the magic of Dr. Bauer's skill. Whether or not it will get 100% of the remaining nevus is still unknown. Although I would love to shout out that news, I can't and won't go there as many things can happen during surgery. Its going to be one nerve wracking wait until Dr. Bauer comes out and gives us the news. Whatever the news may be, I'm ready. Ready to get past this next step in the process and be that much closer to the end. Thank you so much to everyone that follows our story and helps us through this! It makes a world of difference!!!

This is how our fills go!!! No big deal for him! All smiles!

Back at 770!!!!

Trying to give mom a thumbs up!!!

And thats a WRAP!!! Stay tuned to see how surgery number seven pans out! Wish us luck!

Two More Weeks!!!

Even though I have been through this process before, it still amazes me how fast the weeks fly by!! Two weeks from now, Michael, Aiden and I will make the trip back go Chicago to remove these bubbles!!! It's crazy to associate a bit of excitement with any type of surgery but the relief of not having to worry about bubbles anymore is exciting!!

Aiden is still doing great with the process and that definitely makes it easier on us to keep chugging alone. He is starting to struggle with finding the sweet spot to fall asleep in but the poor kid is limited with options!! The left side is weighed down by his bubbles and his right side has a cast on it so it's no surprise that he flops around for quite some time before finally settling.  BUT that's the only thing that slows him down!!!

Aiden had his 8th and 9th fill since I lasted posted  and everything went great! Since we are only filling one bubble, it goes by really quick too!! For the 8th fill, I put in 60cc, leaving the bubble at 680cc!!!! It felt good to know that getting to 750cc wasn't going to be hard at all with a hopeful three fills left!! The 9th fill allowed me to put in 55cc, which was even more exciting because our total was now 735cc....just 15cc away from the size that the expander is at 750!!!! I know these can hold much more than that but it's such an accomplishment to get over the size that gets placed!!! This makes up for the fact that Aiden's shoulder one is no longer being expanded!

Aiden after his 9th fill!!! 735cc

I'm going to end this blog post with some BIG, BIG news!!! Last week, the hole in Aiden's shoulder incision was slowly growing. Not by much but still slightly growing. Then, all of the sudden, it seemed slightly smaller! I thought my mind was playing tricks on me until the next day, I could no longer see through the hole! It appeared that the gauze/bandaid was working similar go how a wet to dry dressing would work and it started closing! It was lucky that we didn't have gravity working against and it wasn't actually a hole on the bubble when it first started. Never expected it to close so, it is really exciting that is has!!! Even if it decides to shift again and reopen, we will definitely make it to our scheduled surgery, which is awesome news!!!!!!!

The hole then...

The hole now...

Just two more fills and Chicago here we come!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

When it Rains, it Pours...

A very close friend of mine (and fellow nevus mommy) just wrote a blog post about what life can be like during expansion. It perfectly described how I feel throughout the entire 12 weeks, so I am stealing the concept for this blog post! You can read the post here but basically she talks about how it feels like a storm cloud is looming over our head during expansion and how we aren't quite sure what the forecast is going to bring.  No matter how great the forecast may appear, at any time something could pop up. This is why when anyone ever asks me if this is our last round, I simply say "I'll let you know after our next surgery."

Things have been going quite well for us this time around but the cloud over my head knows to never get excited about that feeling because expanders are completely unpredictable.  Aiden had his 7th fill earlier in the week and it went well. I decided to continue on the path of taking it easy with the shoulder so I only put in 15cc, giving us a total of 155.  The back was a little hard to gauge this time. I put in 80cc and the expander still seemed quite soft but I decided that was enough, leaving the expander at a total of 620cc!!! WOWZA! 

Shoulder at 155cc

Back at 620cc

Happy as can be just after fill! 

As usual, I took pictures, put the stuff away and we were off to celebrate a friend's 4th birthday. I was somewhat concerned about a purplish area that had shown up on the back expander but by the end of the night, it was gone and not an issue. 

The following day was definitely something I didn't expect. The forecast had changed and it was cloudy with a chance of potholes!!! (Thanks Amie for coming up with that one)....

During our normal morning routine to aqupahor up his bubbles, Aiden walked by me and I did a double take because I swore I saw a small hole. My first reaction was "No, it can't be." After chasing him down (lovely toddler games), I was able to get ahold of him and take a closer look. Sure enough, a tiny hole was there on the incision on his shoulder expander. I'm surprised that I didn't immediately panic but I just pulled out my handy dandy iPhone to take a picture and emailed it off to Dr. Bauer. After this point, I started to get a little nervous but still wasn't panicking because I knew that whatever ends up happening, we will be just fine. Plus, we had a few things going for us at this point. 1. I caught the hole extremely fast since he definitely didn't have a hole when he went to bed 2. The hole is on his incision, not the bubble so for now, our new expanded skin wasn't being compromised and 3. If Dr. Bauer did decide to move up surgery at any point, we have pretty good volume in our bubbles. 

After hearing back from one of the nurses, I went out to get some tegaderm (sticky type of dressing for wounds) to place over the hole and basically wait and see what happens with it. Dr. Bauer confirmed that this is how we should proceed and it wasn't anything to be overly concerned with at this point and that we would no longer expand that bubble. That was obvious to me that we wouldn't be expanding anymore on that bubble but I will have to admit that reading that email stung for just a spilt second that 155 was the reality for our shoulder bubble. Of course this is not our ideal situation but we accept it and move on and perhaps pick up our umbrella and hope that a hurricane doesn't come in these next four weeks until surgery. 

The tegaderm was not working out very well for us due to the location being in somewhat of a crease, so I emailed Dr. Bauer for some tips.  After looking at the second picture, Dr. Bauer thought that the tissue surrounding the hole looked solid, so he basically said to forget about the tegaderm and just keep it clean. Then he warned me that I should expect to see yellowish fluid coming out of it but that it was normal. SAY WHAT??? Ugh. This didn't sound fun but I knew that it would be doable, especially after doing all the things I have already had to do.

Everything seemed to be going ok and the hole seemed to be doing well. This "pothole" situation definitely caused me to be a little nervous and upset feeling but I also had relief in the fact that I knew it would be ok no matter what and that Aiden was not in any pain by this. He goes about his day just fine and you would never know that we had any potholes in our forecast. 

What came next in our week was so far past my radar, that I don't even think our storm cloud knew it was coming....but I guess as the saying goes, "when it rains, it pours...."

Aiden and I were heading downstairs and then all of the sudden, he trips and falls DOWN the stairs. It wasn't very many stairs but it was enough to make a hard fall and land on (luckily) his right side, mainly his arm. Of course he cried and cried and cried but then seemed to be ok. Even though I knew I couldn't have foreseen this coming or really done much to prevent it while it was happening, I felt terrible. After a little while, it didn't seem to be really bothered by it much, except for that it seemed tender. Well as the day went on, his arm was swelling and it seemed a little curved and he said it hurt. So, we decided to take him to the urgent care for an x-ray just in case. Good thing we did because his arm was broken. Technically fractured but to me it was broken and I felt even more terrible despite it being out of my control. I think it is just natural to feel terrible when your child is hurt. I guess you can say that our forecast was now cloudy with scattered showers!!!!! We were doing ok with a hole but now had his arm put into a plaster splint. The urgent care doctor estimated that he would need this on for about four weeks which of course falls right into the time that surgery is supposed to be!!!!! We will see the orthopedic on monday and have more of a realistic time frame for this but it definitely has me nervous for when his right arm will be healed. If it isn't before surgery, then both arms will be immobile and that will be somewhat of a challenge!!

Eating lunch with his splint on!! Covered it with saran wrap to keep it clean and dry!! ;)

On the bright side, my sweet little boy is quite the trooper. The doctor was shocked that he didn't seem to be in more pain.  He has told me that it hurts every once and awhile but if he didn't have the splint on, you wouldn't be able to tell he was going through so much. We are all managing the best we can even though it flat out SUCKS!!! We will continue to fill the back expander and hope that our scattered shower forecast will at least stay....

Catching up!

It's been quite busy around here that I haven't had a chance to update you all on Aiden's growing bubbles. He has had two fills since I last posted and things are pretty much still looking good. He really does amaze me how he doesn't let these bubbles stop him from life!

When we did his fifth fill, my dad's family was here for a family reunion so a lot of them were able to witness just how easy the fills have been for us this time! I think they were all amazed by the process and especially by how Aiden did even when we had a little mishap. Everything had been going just fine until all of the sudden the syringe detached from the needle and there went saline all over Daddy and Aiden. Had this been our first round, we probably would have panicked but we didn't. Luckily, I fill up extra syringes of saline just in case something like this happens so I just moved on to the next one, estimating how much saline actually went in the first time before it detached from the needle. The other bubble went just fine! I just had to laugh though that of course something would happen like that when I have a crowd watching us! We did hit exciting news that week with the shoulder bubble now having 125cc in it, which is half way to the size of the expander!

Everything was going great and then Aiden woke up with a runny nose and a slight temperature a few days after his fill. This always seems to happen at least once during expansion that he gets sick. He of course, was still on the antibiotics so I didn't even bother emailing Dr. Bauer. Thankfully he did not have that bad of a cold and he was all better by the time Sunday came around again to do his fill. I still can't believe that we did Aiden's sixth fill already. The process seems so long when you first get those bubbles placed but before we know it, we are more than half way through the expansion!

Aiden's bubbles are getting pretty big now! The shoulder one is at 140cc and the back one is at 540cc!!!! We are taking it on the easy side with the shoulder as Dr. Bauer has mentioned that it looks on the thin side but for now everything is in good shape.  It certainly doesn't take away any worry though!!! If everything goes accordingly, we should have five more fills and then off to surgery we go!!

Check out his growing bubbles!!!

After his 5th fill, shoulder at 125cc, back at 460cc

6th fill, 140cc

6th fill, 540cc

Half Way!

Aiden's fourth fill was a few days ago and everything went well just like it has this entire round! He cracked me up when I brought down the supplies and he said "you gonna get everything ready?" To which I responded yes to and his reply was "OK." I have been pleasantly surprised that this is how it has been but it just goes to show that it doesn't hurt. If it did, this would play out very differently because he is quite my little softie.

This week, Aiden has definitely paid more attention to his bubbles. He had his shirt off the other night and he walked into a bedroom with closet door mirrors and started checking them out! It's so cute and really funny. He will say that they are "squishy" or "huge" or "cool" and then he wants to make sure everyone else in the room checks them out too! I love that he adapts so well and they don't bother him. I am also glad that he is too young to be able to recognize people staring or gawking at him, whether its innocent or not. We were out shopping the other day and he was wearing a muscle type of shirt so his bubbles were extremely noticeable. There were two twin girls in front of us at checkout and it was obvious that they were staring and wondering about these strange looking bubbles coming out of his back and neck.  My mom heard them ask their dad "what does he have on him" and unfortunately the dad shushed them and they were gone. I'd much rather them ask and us explain then make assumptions about what we are going through. Maybe people think we would be offended if they did ask? I don't know but I just wish more people would ask.


The most exciting news after this fill was that the back bubble is HALF WAY to 750 after just four fills! That is fantastic news knowing that we have seven more fills left and if everything continues on this path, making it to 750 should be no problem. The shoulder one is very close to being half as well but that one will move along cautiously. This week I put 90cc into the back and 25cc into the shoulder.

Back at 375cc

Shoulder at 110cc

Please also remember that we have moved the price of Aiden's cookbooks down to only $10.00!!! Get your copy today if you don't already have one or need a great gift idea for someone!!!

Aiden's Cookbooks

Hello guys,

I have some BIG news about Aiden's cookbooks! We still have four or five boxes of cookbooks left that we would love to sell, so I am moving the price down to $10.00!!!!!!! Yes you read that right!!! "Recipes That Hit the SPOT" is only $10.00 now!! Great deal for a cookbook with 400 great recipes inside.

Please know that I am so grateful to all of you that have already purchased a cookbook, especially at the full price that I started selling them at. You all have made this journey so much easier for us and gave us the opportunity to see the best surgeon in the world for nevus removal without the stress of worrying about the finances to cover flights, hotel, car rental and of course the medical costs!

Please let me know if you are interested in buying one or know someone that might be interested! If you live by me, I can easily find a way to get them to you or they can be shipped to where you live! We will also be doing a few other fundraisers coming up soon for both Aiden and Nevus Outreach so stay tuned. If you are interested in helping out with any of that, let me know!

It's not IF, it's WHEN...

Expansion in a nutshell is unpredictable. There are so many things that could go right or wrong and for us parents going through this, it can be a very stressful time. For the most part, we adapt just fine though. There is just a constant reminder in the back of our minds that at anytime, things could rapidly change. I find myself saying "if" quite often throughout the expansion process. However, there is one thing that is pretty much a guarantee for Aiden. It's not a matter of if, it's a major matter of WHEN Aiden will become irritated by the stitches.

So, just after we did our fill last Sunday and just after I sent an email to Dr. Bauer saying how great everything looked, we woke up with stitch irritation on one of the incisions. Honestly, it wasn't horrible looking but it was very familiar and I knew that I had to send an email out immediately to help prevent this from getting any worse. I thought they would tell me to remove the stitches. Even though I'm not a fan of taking them out, I was prepared for that. I expected that. I wasn't prepared for what they told me instead. I was told that it was much too early to take them out this time and that due to our previous history, it was best to put him on Bactrim for the remainder of expansion. A instant knot formed in my stomach!

There are a few reasons why this completely sucks! 1. No one wants their kid on antibiotics for that long 2. The alternative of not doing it is worse 3. Aiden absolutely HATES taking medicine!!!! We struggled so much with medicine after surgery, that I knew this was going to be rough.  I even asked the pharmacist if there was any other plausible form other than liquid we could use for this. I knew this was a long shot to ask but it was worth a try. Just like I thought, due to the specific amount Aiden needed, liquid was the only solution.

So, this week has been quite challenging for us. It has been frustrating, stressful and full of anxiety. We have tried countless scenarios to sneak this medicine in some way because it's not ideal to hold him down while he is screaming....twice a day for several weeks. Its not fun for him or us and not to mention that most of the medicine ends up on him, not in him. Yesterday, we finally reached some success where he got the full dose of medicine. Which was good because the incisions were starting to look a little more irritated than before. Now, we just hope that the routine will stick and that this will help us from any future problems.

Yesterday was also time for our next fill! Even though we battled lots of tears and struggles this week with Aiden, I can say that I am quite proud of him when it comes to doing these fills. Thank goodness for lidocaine cream because he understands that it doesn't hurt and that it won't take long. He even watched me insert both needles this time and said "I did it" once I was in! I can honestly say that I don't have a drop of anxiety to do these fills because he has been doing so well. Besides the incisions (mainly just the major one) looking irritated, the expanders are looking pretty good. The shoulder one is still slightly bruised but it hasn't gotten worse, so that is a good sign. I was able to put in 80cc into the back and we are now up to 285cc. The shoulder one took 25cc and we are now at 85cc. We are well on our way to making our goals for this expansion but I know better to get too excited about that because like I said before, expansion is unpredictable.

Check out these new bubbles....

Back at 285

Shoulder at 85

"I DID IT"

"I did it" were the final words from Aiden after our second fill today! I am so proud of him. Before we started the fill, I asked him if he wanted to get his bubbles filled and he surprisingly said yes! Of course, followed by a quick no! I can tell he gets a little nervous but now that he understands that there is no pain involved, he does really good! The shoulder one is still slightly bruised so I only put in 20cc so he now has 60cc in there. The back one is a big one so I was able to put in 75cc which now is holding 205cc!

Nothing else to report here except that everything is going well! Check out his new bubbles!!!

Back at 205cc!

Shoulder at 60cc

Feels Good To Be Free

We have made it to Day Ten Post Op which is always an exciting day for a lot of reasons! The most exciting is that this means that Aiden got to have his drains and bandages removed. And boy oh boy it feels good to be free from that. This also means that it becomes time for a bath...FINALLY. That is definitely one of my least favorite things from this process because Aiden stinks for ten days of nothing but hospital smell and bandages!

Day Ten also marks the day that we normally get to do the very first fill. Since Aiden has some slight bruising on the upper shoulder one, Dr. Bauer had warned us that we may not be able to fill at the ten days. Luckily, we weren't told that we couldn't start, so we decided to go forward but just slowly. I took Aiden's drains out in the morning and then bandaged him back up to catch the excess fluid that was coming out. It was crazy this time how much fluid we had draining this time!!! Aiden did great! I talked about filling his bubbles throughout the day because I didn't want him to be ambushed when it actually was time. He is at that age where he can be very sensitive about what is happening to him.

I decided that dinner time would be the perfect time to numb him up with the lidocaine cream. He knew something was up as soon as I brought the press n seal out with the cream and started to cry a little that he didn't want me to do it. It was definitely more difficult than in the past to keep him sitting in the high chair after he was finished with dinner but we managed ok. He enjoyed some carrot cake and then a sucker to help pass the time while watching a show on the good ol' iPad. The suckers used to help slow it down but now he just knows that he can bite it off!

Soon enough, it was time to start the bubbles. He immediately started to whine and cry a little but he was excited to take a bath with this new submarine toy that he got in Chicago, so this helped give him some motivation to get this over with. My mom held him in her lap while I prepped the area. He said "owie" before I even stuck the needle in so I thought that this might not go so well. BUT much to my surprise, he did really well. Whimpered for a small portion but then once the needle was in, he realized that it didn't hurt and he went about his way, looking at other things. I put 50cc into the back expander so that one is now at 130cc! It already looks so big to me! Then I put 15cc into the shoulder one just to keep is really safe so that one is now up to 40cc. That one is already so noticeable since it sticks right out of his shirt so it will be interesting to see it grow over these next few weeks!

I am beyond happy that it went so well. Hopefully the other fills go just as smooth. I think giving him a motivation really helped!! Thanks again for everyone who reaches out to us during this time. It really does help. Stay tuned for more updates and check out his growing bubbles...

Upper Shoulder at 40cc

Back at 130cc

Surgery Six Under our Belt

We have been home for a few days nows from the Windy City and Aiden is doing great. You would never know that he just had surgery last week on August 15th,  if it wasn't for the bandage you can see coming out of his shirt. It's always nice to see him bounce back to normal but it's also a little difficult when he should be taking it easy for a couple of weeks. Try telling that to an almost three year old boy who feels great! Ha!

The one thing that I can say about these surgeries is that it never gets easier. I may be stronger and can fight back the tears but nothing about it, is easy. Each time we have had surgery for Aiden, it has been a different experience yet similar. Surgery number six was different in the sense that Aiden is much more aware and is very vocal about his emotions or what may be hurting/bothering him.

The morning of surgery,  I couldn't  believe that we were heading to the hospital for surgery for the second time on my birthday. Definitely not a fun place to be on your birthday but it was worth it so that I could attend my ten year high school reunion the weekend before we left. The only good thing was that at least this time on my birthday, we knew what to expect, we knew that he would be ok after a few days.

Aiden was third on the list, so we had to be at the hospital at 10am. We let Aiden stay up late so that he could sleep in and luckily that was a success. He woke up about 30 minutes before we had to leave for the hospital so there really was no time for him to ask for anything to eat. Which to be honest, he doesn't really care to eat anyways so I wasn't worried about it! Aiden was totally fine walking into the hospital with his superhero cape on but it was when we hit the nurses station that he said "I want to go back go the car."   Ugh! That hit me so hard that I'm not sure how tears didn't come but I refuseto let him see any weakness that I may be feeling. He was pretty attached to me while we waited for surgery time so I just sat with him and tried the best to distract. He cried and said "help me" while they took his temperature and blood pressure. Another moment that I felt tears welling up in my eyes. Then came time for the Versed, the medicine that makes them become a little loopy so they aren't so upset when they head back to surgery. Well, that didn't go so well and he probably spit half of it out. It still did its job for the most part though so that was good. Dr. Bauer came in shortly after the versed was given go talk the plan over with us. He said he would place two expanders, one in his back and one most likely in the shoulder area. I was surprised to hear that he would expand the back again but it made sense for him to also fix some of the scar tissue that needs some love.

Aiden showing Dr. Bauer his new toy!

Definitely a mommy's boy this trip!

 Shortly after we saw Dr. Bauer, they came to take him back for surgery and although he wasn't screaming, he was still reaching out for me and saying "help me." So hard go hear but the people who work at Highland Park hospital are amazing and they do everything they can to make them feel better about leaving mom and dad. The sad part for me is that this was the first time that he didn't wear his cape back to surgery. He didn't like it and we weren't going to force him. So then we went off to wait for surgery to be done. It seemed like it wasn't that long before Dr. Bauer came out in the waiting room to speak to us. He told us that everything went well and that he placed a 250cc expander with 25cc in already in his upper shoulder and a 750cc expander with 80cc in his back. I was surprised that he put in such a large expander in his back but the skin will be great!!!

Aiden was sleeping when we went back to see him which is good to let him rest but I couldn't wait go hold him. Eventually he woke up and wasn't that happy and definitely was uncomfortable. Took some time to convince him to eat a Popsicle but then we were on his third one! He eventually also ate some  Ritz cheese crackers which surprised me, because go usually takes a really long time to eat. Pain management was tough as usual for us and there was a lot of "owie" "I hurt" and tears while being moved but we were able to get a routine down that made it a little better. Definitely used a lot of shows on the iPad to distract. We wanted to leave the hospital so badly but he hasn't gone to the
bathroom yet and we had to make sure that his pain management was better. Luckily around six at night, he accomplished these things and off we went! Picked up some dinner for Michael and I on the way back and then my parents, Aunt Kate, and cousin Mallory met us at our hotel room. My grandma was there too but they had a long day of driving in from Michigan and she was wiped! Since it was my birthday and my dads too, they got an ice cream cake for us to celebrate. It was yummy! Aiden was doing better back at the hotel but was still bothered by too much movement so he stayed on the couch for a long time watching movies!

The night went ok but the morning was rough as Aiden was pretty sore. His arm was really bothering him. He has a port to one of the expander's in there so it was understandable why he was struggling so much. We headed off to see Mim for a dressing change. Everything looked good, minus a little bruising but Dr. Bauer had already warned us that could happen. The day was a little bit tough on Aiden but my the end of the night, he was coming back to himself and even wanting to walk around a little which was awesome.

Not a happy camper for 1st dressing change

That lump under his face is the upper shoulder expander

Back expander. This one is going to be huge!!!!

We spent the next few days doing some tourist things around the city to keep Aiden distracted. One of the new things we tried this time was the Museum of Science and Industry. If you haven't been there and are ever in Chicago, you should check it out. It was pretty cool. We even decided to become members so we can go back in November and the membership also gets us in to several places close to us back home as well!

One of the most amazing things while in Chicago is always meeting other nevus families. This trip, we were able to meet three. The Bellar family actually had surgery the same day as us but we didn't know that. They have a cute little boy named Branson who also got skin expander's placed for round two.  The Lynd Family was from Canada and their nevus owner is a sweet baby girl named Georgia. This was their first surgery so I was really glad to meet them and help guide them along for what to expect. Last but not least we met The Nolasco Family all the way from the Philippines and they have sweet baby Wade who is on round two of expansion. It was really great meeting them!!

On our last day in Chicago, we saw Mim one last time and I was really proud of how well Aiden did. He did cry for a minute but then was so sweet with her, telling her that she could bandage him back up. Mim has the best heart and we absolutely love her. She even picked up some foam buses that she saw at Target because we were telling her how Aiden was crying for a bus during surgery day, something that we didn't have for him. Susan was on vacation so we missed her but I really don't know how we would manage without these wonderful nurses. I know we would get through it but having them care so MUCH is way beyond any expectation we ever had going into this.

So now, the focus has shifted to filling those bubbles and keeping him healthy. We still have drains in and bandages but just for a few more days. Can't wait for bath time!!! Thank you to everyone who has reached out to us during this time! Stay tuned....

Chicago Here We Come

Hello Guys!!!

It has been way too long since I have updated the blog and with surgery #6 right around the corner, I thought this would be a great time to catch you up with everything that has been going on in our life! In some ways, it feels like we just left Chicago from surgery but in many other ways, it seems like such a long time ago! We had really hoped to have had this next round started and over with by now but its just not the path we were supposed to be on and thats OK. It really was the best thing for Aiden and that has always been top priority for us. Let me explain why we had such a long break....

Round two brought us some really great results but we knew that since we were starting to embark on the arm, that recovery might not be so easy with a very active two year old. Sure enough, we were right. Dr. Bauer and his team were not surprised at all when his armpit started causing a little bit of trouble. We were able to keep it from being infected but the area had still opened up so it was back to wet to dry dressings to help close up the wound. I absolutely HATE wet to dry dressings but the reality is that they do the trick. The wound closed up much faster than the issues we had with round one because it never got infected so that was great news. I thought for sure we would still be ok to move forward with the next round in February. Well, I was wrong and disappointed. Dr. Bauer said that because the arm was a sensitive area, the skin needed to have more time to heal. He said maybe we could start towards the end of April but he would have to see after a few months. Dr. Bauer had also thrown in that if we wanted to, it would be totally ok to even wait until summer.

After some thinking about it, we decided that it would probably be best to give his skin some time to heal AND with Dr. Bauer on an almost five week vacation in May, we just couldn't chance starting earlier and not having our doctor perform surgery if something went wrong. So, it became finalized that we would wait until the end of summer to start round three so that Aiden could enjoy his summer swimming and not worrying about stitches, keeping him healthy and anything else that had to do with surgery.

In between all this time, we have been really busy and its been a lot of fun. My grandma was with us for a bulk of this time off and that was so wonderful being able to spend that time with her. Aiden really grew fond of her too and I am so glad that he has a great grandparent in his life. We also had lots of other visitors come to see us too! My Aunt Pat flew out with my grandma and stayed for a week. Then my Aunt Paula and my cousins, Sydney and Zach, came out for a week all the way from Vermont! Next up was my Aunt MaryAnne and my cousin Sam from Portland. Then came my Aunt Karen to take my grandma home but my grandma ended up staying here for a few more months which was totally fine by us! While my Aunt Karen was here, we took her to Catalina which was so beautiful. Aiden had a blast looking at the fish on the submarine ride! Then last but not least, my Aunt Sue came for a weekend to take my grandma back home in the beginning of June. It was a sad day. We miss her so much and can't wait for her to come back here!

 We also had our 3rd Annual Nevus Pool Party and got to meet two new families!! Its such a blast to get together with the nevus families who live around here and be able to be around people who know just what we are going through.

Our last major thing thing we did on our break was take our annual trip to Michigan to visit family with my mom and Aiden. My cousin had just had her fourth baby so it was even more exciting to be able to meet her while we were there. Eden was so precious and beautiful! We also got to meet Baby Molly, who had been born shortly before Eden! Aiden had such a blast hanging with all the family and he was so excited to see my grandma again!

So now after all that fun, here we are, less than two weeks from surgery #6 on August 15th. It is kinda weird how we have ended up in August for the start of all three rounds now. And this will be the second time that it will land on my birthday! Sigh! The difference this time though is that my parents are coming with us for the most of the trip so we have lots of support with us. We also will be seeing my grandma and Aunt Kate with her daughter Mallory so that will be fun!

I'm not exactly sure what Dr. Bauer's plans are yet but we definitely should expect two expanders somewhere! So ready to get this started and hopefully have a great round ahead of us. Please keep Aiden in your thoughts as we embark on this journey once again. We also still have cookbooks left that we need to sell so if anyone wants one or knows someone that might, please let me know! You can order one directly on the blog or if you live near me, I can get one to you! We are so thankful for all the donations and cookbooks we have sold so far. We couldn't have made this go so smoothly without your help so thank you!

FINALLY...surgery results!

I finally have some time to catch up on updating everyone on Aiden's last surgery and where we stand now on the nevus removal journey. Sorry it has taken this long but we really have been nonstop busy since we got home from Chicago!

After five trips to Chicago, we are definitely considered experts which is not something I am proud to admit but its the truth. We hit a record this time for getting out of the airport and at the hotel. Even though we are only there for a short period of time, Chicago does feel like our "home" away from home.

Since our surgery was squeezed into Dr. Bauer's surgery schedule, we had to have surgery on a clinic day, meaning that we would be the only surgery of the day but that it would have to be in the afternoon. UGH. We got confirmation the night before surgery that Aiden was scheduled for 2:00pm. It  was going to be a long day and most likely we were going to have to stay overnight in the hospital but we would manage.

Lucky for us, Aiden slept in until almost 9am so that definitely helped. We spent the rest of the morning at the local mall and Aiden had a blast riding in this little fire truck in the play area. The time went by quickly and there we were again...at Highland Park Hospital. Aiden definitely knew something was up and did not want the nurses coming in and taking his vitals but we managed. Our surgery time came and we were still not taken back. The nurse had said that Dr. Bauer had gotten caught up in the office but was on his way. Shortly after that, we saw Dr. Bauer stroll right by and knew it wouldn't be long before the nurse came to take us back. By this point, I was so starving so I was really feeling for Aiden but he actually seemed to be handling it just fine. Such a little trooper!

I LOVE that we can still get smiles out of him, even at the hospital! 

When they came to take Aiden back to the OR, he was not happy. I wasn't expecting this for one second, especially since he was given the Versed. I have not cried since the first surgery but I felt the tears coming again. It is so incredibly difficult to leave him but when he cries, my heart just breaks. I was able to hold back the tears until they walked through the double doors to the OR as I refuse to let him see my weakness. As hard as it is, there are two constant comforts that come immediately...1. he is  in the best hands and 2. he won't remember.

Michael and I finally grabbed a bite to eat in the cafeteria and then proceeded back to the waiting room. There comes such relief with expander removal but it makes the waiting go by that much slower as we anticipate Dr. Bauer coming out with the results. It was about 5pm when Dr. Bauer came into the waiting room. He told us that things went well and that basically the arm and shoulder was left. It was pretty exciting news. He also said that he was a little concerned about some rough scarring that may come around the shoulder area but that it will all work out in the end. It made me a little nervous to see the results but the most important thing about seeing Dr. Bauer is taking care of our little superhero so we put that behind us. Shortly after seeing Dr. Bauer, we were called to go to recovery. When we walked in, I could hear his cry but it wasn't anything like last time so I was hoping this was a good sign.   Since we had such a late surgery, we knew we would be staying the night which is probably harder than being at the hotel but we were left at little to no option, especially since we struggle to get him to eat or drink for a long time after surgery. There was lot of crying the first few hours but we managed to get by and finally got him on a pain med schedule that seemed to at least keep him sleeping. He was really irritated that his arm was held down in the ace wrap but under no circumstance did Dr. Bauer want him moving his arm so that was our only option. It was definitely another struggle to eat or drink again...he even turned down a popsicle! Finally around 12:30am, we got him to drink maybe a few ounces of juice but it was a start. After a long night, we were able to get him to eat some baby food and drink some orange juice in the morning and get discharged.

Watching the iPad after surgery. 

We certainly didn't get much sleep but we are so ready to leave this place! 

 From the hospital, we headed straight to Dr. Bauer's office for the reveal. For the first time ever, we actually got to see Dr. Bauer at his office. He normally is in surgery when we come but it was another clinic day so he was there! When we pulled off the dressing, he looked relieved so I was instantly relieved. He said that the area he thought might be an issue, actually looks great! He also said that as long as Aiden isn't moving his arm too much, we could figure out something other than placing his arm in the wrap. Thank goodness because that was really bothering him and he had no interest in moving his arm. His armpit area was extremely tender so it was understandable that he wouldn't want to move it. As exciting as the reveal is, I have to admit that the first reaction for me is always "GULP." The scars are not easy to look at but I know with time they will heal and not be that noticeable in time. After that initial reaction, it really is amazing to see the results Dr. Bauer was able to achieve given that we were pushed up!

Take a look at where this journey has taken us....

Before any surgery

After round one

Back before surgery 

Back after round one!

After ROUND TWO!!!!!!!!

After ROUND TWO!!!! Nevus is gone up until the crease of his armpit.

We are really pleased with the results. One more round of expansion and then some revision surgeries and eventually nipple reconstruction and this nevus removal journey will be over!

The Last Fill

Today was the last fill of round two. It was actually bittersweet. I wish we could have four more fills but I am also glad that we don't have to worry about "fill" day until next time.

Aiden did fantastic today. I wasn't expecting him to because he was less than thrilled to fill up his bubbles. He was, however, thrilled at getting a sucker, especially since it was one with a little lighting mcqueen toy at the top. To say this kid is obsessed with cars is an understatement. He even watched this new little show we found on Netflix that is all about cars.

I did experience a mishap today and actually it made me laugh. When I went to do the first bubble, everything was going fine. The needle was in, I could feel the port and the saline seemed to be going in. Well, out of nowhere the syringe comes flying off the needle and squirts Michael right in the face. We were both silent for a second but moved on to get new supplies since those were now not sanitized.  I have never had that happen before and the only thing I can think of it that I didn't have the syringe completely attached to the needle and it just came loose. The best part was Aiden didn't even flinch and didn't care that I had to poke him again. If that would have happened last time, I would have freaked out but it was no big deal and no reason to panic. So, instead, we laughed it off.

All of the other bubbles went perfect. No tears and no flinching one bit. Aiden even looked at the needle in his arm and clapped and said "Blue" because the butterfly part of the needle is that color. We ended the last fill with a high five and that couldn't have made me any happier. I am no medical professional but I can easily do this and actually find it easier in the comfort of our own home.

I did not put a whole lot in today but I am pleased with the numbers. He now has 290 in the upper chest, 360 in the lower chest and 220 in the back. Considering we are moving up surgery and missed a week, we are not that far off from the goals of 350, 500 and 250. I know this is going to be great results! I am relieved that we are going early so that we don't encounter any more issues as we are starting to see some drainage again from the incisions.

Take a look at what the final fill brought us to....

Upper chest at 290cc

Back at 220cc

Lower chest at 360cc and quite the view of all three! 

We will head to Chicago on Sunday and prepare for surgery on the 23rd!

The Year of Changing Dates....

There have been a lot of unexpected things happen to our little family in 2012 so I shouldn't be surprised by my news that I have to share but somehow I still am...just a little. So, here I am to report that our surgery date of November 12th to remove Aiden's bubbles has been moved to October 23rd. You are probably just as surprised as I was since everything has been going so well. So, let me catch you up to speed. 

A few days after we did fill #5, I noticed some kind of fluid that was leaking out from his upper chest incison. It wasn't a whole lot but because it was coming from the expander that was bruised from surgery, I was slightly concerned that we were heading into a problem. I emailed Dr. Bauer a picture and he said that we would need to watch it. Then a few days later, the lower chest incision also had a spot that was leaking out fluid so I emailed Dr. Bauer again. Keep in mind that the expanders looked good still and it didn't seem like the fluid was increasing. So in my mind, I was thinking that Dr. Bauer would put him on an antibiotic or something to keep the expanders healthy. Well I thought wrong! He said that he thought we should move up surgery. WHAT???????? I didn't see that one coming for one second since we weren't battling a huge complication with a massive infection. And not to mention that we went very quickly from "we need to watch it" to "lets move up surgery." 

He further explained that he didn't want something bad to develop out of this and then have to lose the good skin that we already have so far. He also said that he had a couple of meetings this month where he would be out of town and he didn't want an emergency to occur and then not have him be there to do the surgery. I most certainly didn't want any of those things to happen so we agreed that it was best to move up surgery. 

Was I horribly upset by this news? Not really because Dr. Bauer knows best and I know that the results will be amazing. I would hate to have something happen and not nearly get the results we could have if we left the surgery the same. Was I disappointed? Absolutely! We were doing so well and his bubbles were on track to go over our goals on at least two of the bubbles so it is hard to think about where we could have gotten. I have learned through my own experiences and my friends experiences, that we can not think about the "what if's". With expansion, we don't always know what will happen so we learn to roll with the punches. 

The one thing that made me nervous was when Dr. Bauer was going to be able to schedule us in for surgery. We had so many plans for October with the major thing being a Birthday Bash with two of his little buddies who have birthdays very close to each other. The first date that Kristi gave me (Dr. Bauer's wonderful assistant) was October 8th which would have required us to leave in three days. Although we fly southwest and are able to easily change our flight, it would have cost us a lot of money to change it with such short notice so that wasn't really an option for us and since it wasn't an emergency, Dr. Bauer agreed that it would have been too difficult to get there. So, we went with the next available date which was October 23rd. Of course this date had to directly affect the party and I felt horrible about it but it was best for Aiden and that is our number one priority. Luckily, we were able to move the birthday party up one week and everything worked out. It still sucks that we have to go through this and I have been really tired of switching dates around but 2013 will be a new year and hopefully with it will come better luck with our surgery dates. 

After we had the new date scheduled. I asked Dr. Bauer how we should proceed with the fills and he told us to wait a few days and then let him know how the incisions look. Luckily, after a few days, the fluid seemed to stop leaking out and the incisions were not that irritated so he said we could proceed conservatively. If anything else was to happen with the incisions then he told us to stop. I was happy to be able to do a fill but also nervous because I don't want anything else to happen with them. So I waited a few more days before finally doing one. 

I am so happy to report that Aiden was awesome during this fill. I wish I would have thought to video tape it. He did not flinch or cry one time and that is a huge reassurance to me that doing these fills aren't painful for him but that he is just scared. He was such a big boy that he even watched me fill up his bubbles and helped me check his skin to see if we could fill them up some more. The little car toy that we gave him also helped a lot! He made his beep beep noises along the way and it was over and done with so quickly that I couldn't believe it. I can't wait to tell him one day what a brave little boy he is. It makes me cry just thinking about. He truly is my little superhero. 

With caution on my mind, I filled 20cc in his back expander, and 30cc in his two front ones. Our totals are now 195cc in back, 340cc in lower chest and 260cc in upper chest. We actually do have some great numbers and are pretty close to our goals so that I am really happy about. I really hope to get in one more fill next week! And then off to the Windy city we go after a fun Halloween Birthday Bash that is going to be blast! I can't wait to see the results from this round and share them with you all! 

Here are his latest bubbles...