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
Friday, January 27, 2012
Friday, January 6, 2012
So bummed out!
I have been meaning to update the blog about Aiden's healing process but the holiday season got the best of me and I just didn't make the time for it. Let me catch you up to speed on how he has been doing. I wish I could tell you that everything has been great and that round one is officially over from dressing changes and ace wrap bandages. Sadly, I can't. Shortly after we removed the stitches, (a few weeks after surgery) I noticed that his back and side incision was looking a little red and irritated. We were supposed to be dropping the ace wrap in a few days but Dr. Bauer told us to keep with it a little while longer and keep the incision nice and clean. We followed his instructions despite Aiden's annoyance with the the bandage.
A few days later, I noticed a little bit of drainage coming from these irritated areas. Dr. Bauer suggested that we do some wet/dry dressings to help clean this up. So we started the dressings. Then I noticed that the little bit of drainage was increasing and turning into pus. We definitely had an infection on our hands and Aiden was put on an antibiotic. After five days of that, the infection got even worse. I don't even know how to describe it but there were these 3D looking bubbles of pus that looked like they could burst at any moment. We switched antibiotics at that point to something stronger in hopes that this would turn around. It was just awful but Dr. Bauer and his staff have been nothing but awesome in helping us get through this. I am so thankful for him!
Christmas Eve came around and it still looked bad. At this point, Aiden had been on antibiotics for a little over two weeks so I was hoping to be able to start the new year with a fresh start. Dr. Bauer told us to increase the dressing changes and make sure we are getting the best contact we can so that these areas can get clean and be healed. Unfortunately, the new year came and here we are...STILL doing dressing changes and ace wrap. On the plus side, it does seem to be coming around, just slowly.
Yesterday, I got an email that I hoped wasn't going to come. It was from Dr. Bauer letting me know that Aiden can't have surgery in March. I had booked this surgery before surgery #2 had ever happened, not knowing we would be dealing with an infection of course. He let me know that we need four months of complete healing time in between surgery and that even though Aiden is starting to come around, we would be at significant risk to put expanders in anytime soon. I know its for the best but I am so bummed. We were all ready for the Chicago winter weather and we were going to be with a lot of our nevus buddies on that trip. At least everything we booked can be cancelled and put on hold until our next surgery. We are not too sure when that will be yet since we aren't completely healed today. Dr. Bauer said probably early summer. It will be more difficult with Aiden being older (and bigger) but we will fight the battle when the time comes.
The plus side is that after we are healed up, we can focus on everything but surgery, dressing changes and quarantine for awhile. I will be sure to keep you guys posted on when our next surgery will be and how Aiden is doing with the healing process.
Hope everyone is having a great year so far. Even though, ours hasn't started out the way we had hoped, good things are to come this year!
We still have cookbooks available for sale if you are interested or know anyone who would like a copy! You can order on the blog or contact me! Even though, we still have lots of time left before the school year is over, these cookbooks would make for the perfect teacher gift!!!!!!
A few days later, I noticed a little bit of drainage coming from these irritated areas. Dr. Bauer suggested that we do some wet/dry dressings to help clean this up. So we started the dressings. Then I noticed that the little bit of drainage was increasing and turning into pus. We definitely had an infection on our hands and Aiden was put on an antibiotic. After five days of that, the infection got even worse. I don't even know how to describe it but there were these 3D looking bubbles of pus that looked like they could burst at any moment. We switched antibiotics at that point to something stronger in hopes that this would turn around. It was just awful but Dr. Bauer and his staff have been nothing but awesome in helping us get through this. I am so thankful for him!
Christmas Eve came around and it still looked bad. At this point, Aiden had been on antibiotics for a little over two weeks so I was hoping to be able to start the new year with a fresh start. Dr. Bauer told us to increase the dressing changes and make sure we are getting the best contact we can so that these areas can get clean and be healed. Unfortunately, the new year came and here we are...STILL doing dressing changes and ace wrap. On the plus side, it does seem to be coming around, just slowly.
Yesterday, I got an email that I hoped wasn't going to come. It was from Dr. Bauer letting me know that Aiden can't have surgery in March. I had booked this surgery before surgery #2 had ever happened, not knowing we would be dealing with an infection of course. He let me know that we need four months of complete healing time in between surgery and that even though Aiden is starting to come around, we would be at significant risk to put expanders in anytime soon. I know its for the best but I am so bummed. We were all ready for the Chicago winter weather and we were going to be with a lot of our nevus buddies on that trip. At least everything we booked can be cancelled and put on hold until our next surgery. We are not too sure when that will be yet since we aren't completely healed today. Dr. Bauer said probably early summer. It will be more difficult with Aiden being older (and bigger) but we will fight the battle when the time comes.
The plus side is that after we are healed up, we can focus on everything but surgery, dressing changes and quarantine for awhile. I will be sure to keep you guys posted on when our next surgery will be and how Aiden is doing with the healing process.
Hope everyone is having a great year so far. Even though, ours hasn't started out the way we had hoped, good things are to come this year!
We still have cookbooks available for sale if you are interested or know anyone who would like a copy! You can order on the blog or contact me! Even though, we still have lots of time left before the school year is over, these cookbooks would make for the perfect teacher gift!!!!!!
Monday, November 28, 2011
Aiden's Birthday Fundraiser!!!!!
Aiden's 1st birthday has already passed but we have yet to have his big party! We felt that it would be a lot more fun (and less stressful) to wait until he was bubble free so we picked to have his party on the next available day which ended up being December 3rd.
His birthday is extra special to me so I wanted to make sure we did something extra special for him. I knew that I had to include Nevus Outreach in this special day. This organization has touched so many lives and we are very grateful they exist. Every other year, Nevus Outreach holds a huge conference where nevus families can come and socialize with each other and learn a lot of information about the condition. It is something we have looked forward to going to since Aiden was born.
The next conference is in July of 2012 and we are so excited to be attending. They work very hard to keep the costs low so that the people who want to come can afford it. Raising money is not always easy, especially when not too many people even know or understand about the condition so Nevus Outreach reaches out to us to help out. They provide a way for us to help raise money through what they call "Grassroot Fundraising" and in turn they help discount our cost into the conference based on the amount of money we raise. As soon as I read about this, I knew this is what we should do for his party. This is the best gift anyone could ever give to our son. A toy or clothes only last a short amount of time but a charity changes lives. I am so grateful for Nevus Outreach and I can't wait for Aiden to meet more new nevus buddies throughout his life.
We thank you so much for your support. If you would like to make a donation to Nevus Outreach in honor of Aiden's 1st Birthday, please click on the link below!
We also have cookbooks still available for sale if you would like to help support Aiden's surgeries in Chicago. They make perfect gifts for the holiday season! You can order directly from the blog or if you live near me, I can get a copy to you. We can't express how grateful we are for having such amazing friends and family throughout this journey.
Thursday, November 24, 2011
RESULTS from Round One!
I have been a bit busy since returning home from Chicago, but I figured that Thanksgiving would be a perfect day to update everyone since we are SO THANKFUL this year.
Aiden's second surgery in Chicago was so much better than I ever thought it would be. Several of my friends had told me that expander removal was so much easier but it is difficult to really believe that until it happens. I had a little bit of anxiety the night before surgery but I was really surprised at how calm I felt the next morning. I am pretty emotional in general so I still thought that I might shed a tear or too at some point during the day but it never happened. I feel 100% comfortable with Dr. Bauer and I think that helped a lot. Aiden seemed a little scared but everyone around him was very involved in making him as happy as he could be.
The one thing that drove me crazy this surgery was the wait. Last time it went by so fast but I was also a lot less anxious to see Dr. Bauer in the waiting room. I couldn't wait to hear the results this time. Luckily, Michael and I sat next to some very friendly people who helped pass the time. The surgery was only about 2 hours long but it felt like an eternity for me. When Dr. Bauer walked through the door, I could tell he had GREAT news for us.
The first thing he told us was that "WE DID GREAT." This has really stuck with me. The success of the surgery played a huge role in how Michael and I did expanding at home and I love that Dr. Bauer makes it a point to give us some credit. He told us that the back part of the nevus is completely removed and that a small portion is left on the upper chest and arm. I couldn't believe what I was hearing! I knew that we should be able to get a good amount off but I really had no expectations. It was such a huge relief. Dr. Bauer let us know that next time he would definitely have a chest expander and that he would decide later on what he would do with the arm so we may end up with two expanders again next time as well. I am confident that Dr. Bauer knows best and that the right decision would be made.
The rest of the day, we focused on taking care of Aiden as we were secretly dying to see results. It was so great to have him back in my arms. He had a little bit of a difficult time at first but soon enough we had him resting up. Unfortunately, he has become afraid of strangers so every time the nurse would come in, he would cry or scream. We knew that the best thing would be to head back to the hotel but Aiden had to be able to keep his food down before we could leave. It was a long day but we were back to the hotel about 6pm.
The next day, we headed off to Dr. Bauer's office for the big reveal. Mim was so excited to see us again and so were we. Aiden was a little unsure this time around and didn't like the dressing change very much but he did pretty good considering his fears. It is difficult for me to describe what it felt like to see the results for the first time. It was amazing and strange all at the same time. I had spent an entire year looking at his nevus everyday and now to see a lot of it gone was unreal! All I could say was "WOW," over and over again. Simply FANTASTIC progress. The stitches are never easy to look at but I will take that any day over constantly checking the nevus for any changes. Mim thought everything looked outstanding and was very happy for us!
I know you all have been wondering what the progress looks like so take a look for yourself. I haven't been able to get the best pictures because he doesn't like dressing changes so we try to make them as quick as possible but the pictures are still AMAZING!
Thank you so much to everyone who has been following Aiden's journey. We are very excited to have a break from expanders until March! I will continue to keep you updated on his healing progress. So far, he is doing well!
Have a very HAPPY THANKSGIVING!!!!!!!!!!!!!!!!!!!
The first thing he told us was that "WE DID GREAT." This has really stuck with me. The success of the surgery played a huge role in how Michael and I did expanding at home and I love that Dr. Bauer makes it a point to give us some credit. He told us that the back part of the nevus is completely removed and that a small portion is left on the upper chest and arm. I couldn't believe what I was hearing! I knew that we should be able to get a good amount off but I really had no expectations. It was such a huge relief. Dr. Bauer let us know that next time he would definitely have a chest expander and that he would decide later on what he would do with the arm so we may end up with two expanders again next time as well. I am confident that Dr. Bauer knows best and that the right decision would be made.
The rest of the day, we focused on taking care of Aiden as we were secretly dying to see results. It was so great to have him back in my arms. He had a little bit of a difficult time at first but soon enough we had him resting up. Unfortunately, he has become afraid of strangers so every time the nurse would come in, he would cry or scream. We knew that the best thing would be to head back to the hotel but Aiden had to be able to keep his food down before we could leave. It was a long day but we were back to the hotel about 6pm.
The next day, we headed off to Dr. Bauer's office for the big reveal. Mim was so excited to see us again and so were we. Aiden was a little unsure this time around and didn't like the dressing change very much but he did pretty good considering his fears. It is difficult for me to describe what it felt like to see the results for the first time. It was amazing and strange all at the same time. I had spent an entire year looking at his nevus everyday and now to see a lot of it gone was unreal! All I could say was "WOW," over and over again. Simply FANTASTIC progress. The stitches are never easy to look at but I will take that any day over constantly checking the nevus for any changes. Mim thought everything looked outstanding and was very happy for us!
I know you all have been wondering what the progress looks like so take a look for yourself. I haven't been able to get the best pictures because he doesn't like dressing changes so we try to make them as quick as possible but the pictures are still AMAZING!
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| Our little superhero gearing up for surgery! |
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| The back as a newborn! |
DRUMROLL PLEASE...
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| After surgery! ALL GONE ON BACK!!!!!! |
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| The front before surgery! |
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| AFTER SURGERY!!!!!!!!!! |
Have a very HAPPY THANKSGIVING!!!!!!!!!!!!!!!!!!!
Wednesday, November 9, 2011
The Last and Final Fill of Round One!!!!!
Tonight was a great night! It was the last fill of round one! Everything went so smoothly that I felt like a pro. I am so excited that I won't have to worry about expanding for another four months!
I was able to get in 20cc in the belly and 25cc in the back! The final total for the belly expander is 470cc and the back expander is 500cc! Isn't that amazing! I am so glad that we had such a successful round. Aiden did so amazing throughout the process and I am proud to be his mommy.
We will be leaving for Chicago on Saturday. I am oddly excited for this surgery to come. Seeing results from these past 12 weeks is going to be so amazing. Dr. Bauer and his staff is more than I ever could have dreamed of and I am so thankful for them!
Take a look at Aiden's bubbles! Next time you see pictures of him on here, they will be gone!!!!!!!! YAY!
I was able to get in 20cc in the belly and 25cc in the back! The final total for the belly expander is 470cc and the back expander is 500cc! Isn't that amazing! I am so glad that we had such a successful round. Aiden did so amazing throughout the process and I am proud to be his mommy.
We will be leaving for Chicago on Saturday. I am oddly excited for this surgery to come. Seeing results from these past 12 weeks is going to be so amazing. Dr. Bauer and his staff is more than I ever could have dreamed of and I am so thankful for them!
Take a look at Aiden's bubbles! Next time you see pictures of him on here, they will be gone!!!!!!!! YAY!
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| His big belly at 470cc! |
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| His big back at 500cc! |
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| Look at how wide he is! |
Wednesday, November 2, 2011
Aiden's 9th fill
We were supposed to do Aiden's fill yesterday but I didn't want to do one on his birthday so we did it this morning. The hardest part now about doing the fills is keeping him still for 45 minutes while the numbing cream does its magic. It would be so wonderful if he would just sit through an episode of Mickey Mouse Clubhouse but that lasts about 10 minutes! Daddy did everything he could to keep him busy but it was a long 45 minute wait!
I noticed this past week that Aiden's expanders were not softening up as much so I wasn't expecting to get much in. Besides, I am still taking it easy since the incision area is slightly irritated. Aiden did great. A little bit of tears but I credit that to being upset that he had to sit in a controlled environment some more. I got a whopping 20cc in the belly and 25cc in the back. Aiden now has totals of 450cc in belly and 475cc in the back. Even though it was a small amount, it sure did make a big difference. I am so glad that we are near the end because its getting a little uncomfortable for him, especially in the car and on the changing table. Luckily, after a doctor's appointment today, Aiden won't have to go anywhere in the car until we head to the airport since we are in quarantine now.
Take a look at his growing bubbles!
I noticed this past week that Aiden's expanders were not softening up as much so I wasn't expecting to get much in. Besides, I am still taking it easy since the incision area is slightly irritated. Aiden did great. A little bit of tears but I credit that to being upset that he had to sit in a controlled environment some more. I got a whopping 20cc in the belly and 25cc in the back. Aiden now has totals of 450cc in belly and 475cc in the back. Even though it was a small amount, it sure did make a big difference. I am so glad that we are near the end because its getting a little uncomfortable for him, especially in the car and on the changing table. Luckily, after a doctor's appointment today, Aiden won't have to go anywhere in the car until we head to the airport since we are in quarantine now.
Take a look at his growing bubbles!
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| His clothes are getting a little hard to get over such a wide area but they will fit perfectly after surgery! |
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| Playing with a new birthday toy right after his fill! |
Tuesday, November 1, 2011
Aiden's First Birthday
Today is Aiden's first birthday and it amazes me that an entire year has gone by already! There certainly have been times throughout the year that seemed like time was moving slow but for the most part, it feels like a blink of an eye. When I look at Aiden, I am one proud mommy. He is one of a kind. His personality lights up the room and he absolutely loves every bit of attention that he gets.
Thinking back on November 1, 2010 brings back such an emotional time in my life. When I woke up that morning at 4:30am, I most certainly didn't expect to be so scared or have so much anxiety after he was born. For weeks I didn't know how to feel. I was happy, sad, anxious, scared and blessed all at the same time. I had the perfect little baby boy with a bunch of unanswered questions. I cried randomly and thought the worst. It was definitely not how I pictured the day to go but I am happy that its now just a memory.
I am so thankful to be in a much better place today that it brings tears to my eyes. I knew there was no way I would get through today without crying just a bit. It was a tough time in my life but I wouldn't take it back simply because I wouldn't have the same Aiden. I am so much stronger now that I have questions answered and a huge support group. Nevus Outreach has been a life changer. Without them, I would have made decisions not knowing that they would have been a mistake due to being badly misinformed. I have also made lifelong friends in the process and I love knowing that Aiden has plenty of little buddies who he can relate to when he is older. Thank you to all my friends and family for being there throughout this year. I would have fallen apart without you.
Today was a FANTASTIC day. Michael and I took him to Disneyland for a few hours and he had a blast. We were even able to get a picture with Goofy, which he always enjoys! Then, we headed home to get ready for a small party. Due to surgery being so close to his birthday, we decided that it would be more fun to do his bigger party after we get back from Chicago but I still wanted to do something to celebrate his happy little life today! So, we invited a few people over, had some dinner, opened some presents, and let Aiden have his first taste of cake! He wasn't too sure what to think of everything but we all had a blast watching him experience his 1st birthday. Here are just a few pictures from today.
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| Grandpa and Grandma Rexroat |
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| Uncle Trevor and his girlfriend, Lisa |
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| Grandpa and Grandma Savage |
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| Our fun neighbors...Audrey, Mike, Joyce, Monique, Juliann |
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| Aunt Renee |
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| Juliann giving Aiden a birthday kiss! |
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| Mommy and daddy with their birthday boy! |
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| Aiden loves characters at Disneyland |
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| Opening gifts...of course, Mommy opened them ALL |
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| First Birthday cake...he was really unsure what to do with it. Hardly made any mess at all. |
Even though I am sad that his birthday snuck up on me so fast, I am so HAPPY because this means that we are now less than two weeks away from leaving on a plane back to Chicago. We are back in quarantine now until we leave just to make sure that Aiden does not get sick before surgery. It's hard to stay cooped up in the house but I just can't risk it, especially in the middle of cold and flu season. Luckily, we leave one week from Saturday so its not as long as the first surgery.
Thank you so much to everyone who has followed and supported Aiden's journey thus far! I will continue to keep you all posted...we have two more fills to do and then Dr. Bauer is going to work his magic on removing nevus! I am so excited to see results!!!!
With only a few hours left of this day, I would like to wish my little Aiden a HAPPY 1st BIRTHDAY one more time! Also, a happy birthday to his nevus twin, Brayden, who was born on the same day as Aiden! We crossed paths back at our first Nevus gathering in Arizona and have been friends ever since!
Goodnight everyone!!!!!!!!
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