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!!!!!!
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