Monday, November 4, 2013

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!

Thursday, October 24, 2013

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!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Saturday, October 12, 2013

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....

Wednesday, October 2, 2013

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

Wednesday, September 18, 2013

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!!!

Tuesday, September 10, 2013

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!

Monday, September 9, 2013

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