Monday, July 1, 2013

LIVING Life Instead of Planning for a Funeral

The truth. I have spent the past 2 1/2 years since I was 15 weeks pregnant with Aiden planning for a possible funeral. Everyday I have celebrated his milestones and sweet face, I have grieved for what might be in store for our family. Spending my days wondering-how much time does Aiden have left with us? I wouldn't say my life has been consumed with it but it's always in the back of my mind. It's sometimes the harsh reality when you are raising a child who is as medically complex as our Aiden boy. It doesn't even take a simple cold...a cough or crying too hard can be life threatening for Aiden-yes, he has learned that if he cries hard enough that he stops breathing and mommy WILL come running! Welcome to the terrible twos of a child with a trach! Please, feel free the next time you see Aiden to lecture and scold him all you want for this new little trick ;) 

Recently I had my big epiphany of WHAT AM I DOING?!!! Yes, my responsibility is to keep my son alive every day but shouldn't there be more? I was going through the motions of getting him out of the house and enjoying the world-the zoo, the park, Target, DISNEY WORLD!!! but what was I really doing? At home I would prop him on his boppy, throw on some Mickey Mouse and cuddle him the rest of the day. It's called comfort care. Something you learn to do very early on when you realize you might not have much time left with your child. You make their life comfortable and as easy as you possibly can. You don't want to do physical therapy right now Aiden? Ok, here's some Mickey Mouse instead. Oh, you don't like laying flat on your back-here's a boppy to prop your head up! 

It's important to note that there were times in Aiden's life that these things were appropriate. He's been very, very sick and medically unstable for quite some time now and slept most of the day. But when he was awake I let Aiden have what Aiden wanted. This was all fine until after his open heart surgery in February. Aiden changed. He was more awake, more energetic, more full of LIFE. But I found myself still not wanting to push him too hard. We would try some propped tummy time, sitting in his chair, sidelying playing but the moment he started throwing a fit (desatting from crying too hard) I would put him on his boppy and turn on his beloved Mickey Mouse. 

In the past two months I started thinking to myself Is this how I am going to always treat Aiden-live like he might be dying or are we going to LIVE?!! I am exhausted from spending the last 2 years planning for what could be for Aiden. Preparing my mommy heart, my kids hearts, and keeping Aiden comfortable. But recently he showed us HE wants more. He has started taking an interest in playing. Something as simple to most as playing with a rattle is a HUGE milestone for us. He likes to push toys to make them light up and make sound, he throws toys at his siblings, and his new favorite game...throw everything on the floor and see how many times Mommy will pick it up!!! I am so excited! He is really taking off and we can tell he is feeling better. 

Our biggest new milestone (drumroll please....) Aiden has learned to roll over! Oh how it warms my mommy heart! He can roll from back to belly and belly to back. He LOVES it and it's been fun watching to see what things he's spent the past 2 years just itching to get into!!! The first thing he rolled for was his suction catheter box LOL So in the past two months of reassessing how our family was going to start LIVING again we've taken the boppy away from Aiden and he loves just being on the floor and rolling now (it was a rough transition but we let him cry it out and he hasn't thought twice about it since), he now only watches Mickey a few times a day when Mommy needs to shower or do stuff around the house, and we let him be more independent. I won't lie, it was so hard at first-watching him struggle to reach for his binky when I know he could roll over and get it or cry when brother takes a toy from him-but that's the part of LIVING! We've never pitied Aiden because we know he's well loved and his life is full of purpose but now we have expectations for Aiden. Not to just "make it one more day", nope, we now push Aiden and prepare him for the day he will become independently mobile, communicate, and breathe on his own. 

There are of course days of grieving...there always will be. I would be lying if I said this journey was easy. It is extraordinarily difficult to watch your child being poked and prodded daily, spending 3-5 days a week at the hospital, watching them being kept alive with the help of machines, and splitting my time between three children who need me very much. But it's so much more rewarding and joyful than any amount of stress or sadness. Aiden isn't sad so why should I be? He doesn't know that he wasn't expected to live this long. All he knows is love and happiness. Aiden doesn't realize that at almost 2 years old he should be walking, talking, eating by mouth...he thinks all of the cool kids have a trach and feeding tubes! 

It's nice to finally be able to say that we are living, laughing, and enjoying life without all of the "what ifs" constantly looming over. We know there will always be bumps in the road and setbacks but we are ready to forge ahead and start preparing for Aiden's future-how will he be mobile, what preschool should we send him to, what home modifications do we need to make? Living. It's a good feeling. I guess you could say it's taken us 2 years to get to the acceptance phase of the journey. Accepting the things we can not change and embracing this journey we are blessed to be on with Aiden. We are excited to celebrate his 2nd birthday in less than two weeks!!! Watch out for some super cute pictures!!!

Sunday, May 5, 2013

We're still here!!!

Wow, it has been forever since I have blogged and so much has changed! Aiden breezed through open heart surgery and we are so happy to announce that everything went beautifully!! I apologize for not keeping the blog updated at that time but I was emotionally exhausted and we have been extraordinarily busy!

We still don't know long term about Aiden's heart and he will need another open heart surgery in the next few years but for now he is doing well! We will be talking about weaning his daytime ventilator settings soon-we are very excited to see what Aiden is ready to do!

Our most exciting news is we just got back from Disney World!!! A Special Wish Foundation-Lancaster Chapter sent our family to Disney World so that Aiden could meet Mickey Mouse!!! We spent 8 days in Florida and we all had a wonderful time! I will do a separate post on all things Disney and tips for taking a child on a ventilator to Disney! We had a blast!!! Aiden is in the hospital now with what appears to be a pretty yucky virus so I will post more when we are home and settled!!! Here are a few pics from Disney World :)

Aiden thought Jessie from Toy Story was hilarious playing peek a boo with him!

Aiden was in total shock!!!

His nose is way bigger than it looks on tv, mom!

Monday, January 28, 2013

Hopes and Fears

My whole post tonight is largely inspired by the beautiful photo above. We were very blessed to have Jessica Kranz Photography come to our home to photograph Ashleigh, Andrew, and Aiden for a pre-heart surgery/Valentine's day shoot. The images she took are incredible and our family will cherish them forever. So many photos filled with love and beauty. A love so few can understand but that our family knows very well.

It's a love we can't describe, full of hopes and fears. We have had moments of pure despair and moments of wonderful rejoicing. God has been so faithful to our family. This journey could have been dark and ugly but Aiden has brought so much light into our lives it's hard to ever see the darkness. So many of you have followed Aiden's story from the beginning when he was a teeny tiny peanut in Mommy's tummy! I know many of you are asking and wondering how is Aiden really doing? Everything has changed so dramatically for Aiden over the past year that sometimes I forget to update the blog and have lost some of my honesty on here. Leaving many of our closest friends wondering and worrying.

So how is Aiden doing? Well on a day to day basis he is honestly doing really well! Aiden is a smiley little guy ALL the time and he isn't in any pain most days. He is very social and very much aware of his surroundings, just not on an age appropriate level. Aiden is more on a 6 month old level with how he plays and interacts but he is content with us cuddling him like a little baby! His medical equipment doesn't seem to bother him (if I were to guess I would say that he's pretty much oblivious to it unless I have to clean something!) He never messes with it and ignores it for the most part. As a family, we really have all adjusted pretty well to the trach and ventilator and most days we pretty much forget it's there. Just like with anything, it becomes routine, and although I don't exactly love it, I love that it is a means to keep Aiden here with us.

Mommy's arm was edited out to make it look like he was sitting on his own...pretty cute, huh? I can't wait until he can sit up on his own like this!!!

But how is Aiden really doing? We honestly don't know. If Aiden just had one medical condition we might have a better idea but with multiple challenges it's really hard to say. When we thought he was trached for chiari related issues we were confident this would be short term (a few years maybe) and he would be fine and walk, talk, breathe like any other child at some point. But the latest findings with his heart kind of complicated everything...alot. We went from having a lot of hope to having a lot of fears. We have spoken with many doctors, nurses, and support staff at NCH and have been prepared for many things. 

Our first concern is keeping Aiden healthy (and let's be honest, alive) before his heart surgery. Every day is an adventure with Aiden's health and we don't even know what to expect most days anymore. Then we have to pray that Aiden comes out of heart surgery doing well. His cardiac surgeon has been very honest with us that this could be a prolonged recovery for Aiden after heart surgery because his health is so complex. We have also been told many many MANY times that heart surgery may not fix or change anything. We are pretty much reminded of this almost every day. Aiden could be ventilator dependent his entire life because of the havoc his body has wreaked on itself. It's just so sad.

And then we were prepared of course, of how much time Aiden might have left with us. Mainly because we just don't know. No one knows exactly why Aiden continues to get worse and not better. We can guess (his heart, his airway, his chiari etc.) but we had a bubbly, breast feeding, breathing his own air boy last Spring and his health has declined dramatically since then. That's what is hardest for us. Watching our sweet boy rely on more machines just to survive and there is nothing we can do for him. He has endured more surgeries, more procedures, more hospitalizations and we are still no closer to getting him better. He might be more comfortable but not progressing the way we had hoped. We have been urged to seek guidance for the kids in case something should happen to Aiden and that in itself is horribly painful. The reality that we might lose Aiden is more than I can bare.  The thought of Ashleigh and Andrew losing their brother makes my mommy heart hurt so much more. 

But we've seen Aiden do it. Time and time again. OVERCOME. FIGHT. SURVIVE. And he does it with such grace. There is no doubt in my mind that Aiden has the will to live. He is one very determined little man. But we also know that Aiden's body is very tired. Over the past 2 months Aiden has become 100% dependent on medical equipment to keep him here with us and that is the reality we live with every day. We want our friends and family to know that Aiden really is doing well-he laughs, plays, and tries really hard every day to hold up his head and be a big boy-but we also pray every single night that he is still with us the next day. 

Hope. It's what keeps us going every day. It's something I pray we never lose. We have hope that Aiden will fly through open heart surgery with no problems. We have hope that Aiden will breathe on his own again some day. We have hope that Aiden will be able to focus on just being a kid! I truly believe these things. We know the reality of what we face but our God is so much bigger and so is our hope. Our home is full of love and I promise you there is joy in this journey. We thank you all for loving our family and your wonderful support!

I had to add a picture of our cutie Andrew too! 

Tuesday, January 15, 2013


Yay! After about 6 months in the making Aiden's webpage is finally up and running! It contains information about Aiden, his medical conditions, and information/updates about what Team Iron Aiden is doing! You can purchase Team Iron Aiden merchandise directly from the webpage too! We are very excited to share this with all of you.

His webpage is:

Hemp bracelet with hand stamped washer "Team Iron Aiden"/heart

Rock star shirt-22Q for 22q deletion syndrome, SB for spina bifida, broken heart with bandaid representing Aiden's mended heart

Back of "superman" shirt...copy of Aiden's actual footprints

Front of "superman shirt"

Hand stamped pendant "Team Iron Aiden" with a heart charm 


Monday, December 31, 2012

Surgery #14...coming right up :/

Oh boy, oh boy, oh boy...Aiden has been quite the ornery little guy since my last post!

You can see the word rotten written all over his face! He's a funny little guy!

First off, I forgot to post on the blog about the amazing Christmas toy drive that we did for Team Iron Aiden! Oh my goodness, so exciting! We asked our facebook followers, friends, and family to donate toys, gift cards, and monetary donations so that we could purchase toys for the kids at NCH that had to spend Christmas in the hospital. We raised so much that we were able to provide a gift for every child on the Cardiology, CTICU, Neurosciences, Pulmonary, Burn Unit, 5A, and 9A floors!!! Plus we had lots of extra toys to give to the hospitals general Christmas toy donations! I am sorry that I forgot to post here and give everyone the opportunity to donate but we will still be doing care packages year round plus other fun things so we will always need donations! More details later!

Team Iron Aiden donations for the toy drive..this wasn't even all of them-how awesome is that?!!! Many, many, many generous donations!

In between Aiden becoming "vent dependent" and collecting some awesome toys for the children at the hospital, we finally made our trip to Cincinnati to get our second neuro opinion. Wow, when Aiden wants to initiate someone into all of his Aideness complicatedness (I am making these words up as I go!) then he goes BIG. Aiden went down just a few days after us bringing him home on the vent 24/7 to have a sedated MRI of his brain and spine for the neurosurgeon in Cincinnati. The 2 hour MRI went great but shortly after taking him to the recovery room they had to call a code blue on him-yes, I was there for the entire ordeal and he's grounded forever after that little stunt! No one really knows for sure what happened but it happened moments after they went from hand bagging Aiden to switching him over to his Trilogy ventilator-his oxygen saturations dropped quickly and they couldn't find a pulse. Our day trip to Cincinnati ended up in Aiden getting admitted to PICU. I am not kidding! They were so not prepared for him!! I tried warning them before the test that he is sometimes ornery after "easy procedures" but he sure showed them...not in a good way! There are better ways to get attention Aiden, like flashing your super cute smile :) 

Aiden in his big ole bed in the PICU at Cinci Children's Hospital

We are thrilled to say that Aiden kept his cute little booty home this Christmas!!! It was my one and only Christmas wish-having my family together at home for Christmas this year! We cherished every moment, despite both of the boys being sick including Andrew running a fever and lots of fun stuff to go along with it :/ But we were home and we were happy! Yay us! Aiden's grumpiness really cracks me up!

Ashleigh is so proud of her baby brother....he was mad she woke him up so early ;)

Andrew loved the job of helping baby brother open his gifts too!

Aiden with all of his new toys!

And lastly, we did find out from Aiden's cardiologist and cardiac surgeon that Aiden will indeed need another open heart surgery :( Surgery is scheduled for February 6th. My mommy heart is still broken over it so I don't have much more to say right now about it. We meet with his cardiac surgeon January 10th to go over everything and we have a busy month of appointments and another trip to Cincinnati. We just spent a few hours in the ER tonight because Aiden's cold was really starting to get the best of him but guess who is winning? Aiden-1 Cold-0 :) Take that you stinky old rhino virus.

Aiden might beg to differ on who is winning but I am calling it! Even sick he is super cute and a cuddle bug!
 Thank you for your continued love and prayers!!!

Wednesday, December 5, 2012

Pulmonary Arteries are NOT our friend...

Where do I even start? I will warn you now that this post will be all over the place! For those that don't follow facebook: Aiden was home almost a month after getting his trach! We are completely comfortable with his trach, Aiden is getting used to it, and we have taken him out and about just like we usually would :) But in that month at home we knew something was not quite right. Aiden came home with oxygen through the day and the ventilator (bi-pap) at night. But he was retracting when breathing. We stayed in contact with his doctors the whole time and kept them updated but there were no obvious red flags that Aiden was in danger.

That brings us to last week after Thanksgiving. Aiden began riding the ventilator (letting it breathe for him), was retracting more, desatting etc. Once he got a fever I brought him to NCH and they admitted him. At first they diagnosed him with tracheitis (trach infection) but after explaining to them that Aiden had been retracting for a month, they knew it was more than a trach infection. We agreed that Aiden would remain in the hospital until we could get further testing done.

While Aiden was there I brought up many long term concerns with development and regression. After assessing Aiden they decided to test for mitochondrial disease, neuromuscular disorders, thyroid, and further genetic testing...some of these tests will take months to come back so I am not even really thinking about the results at this point-well, I am thinking about them but not obsessing over them.

Aiden had been scheduled for a sedated CT scan of his heart and airways about a month ago when his cardiologist noticed that his pulmonary arteries were still enlarged on his echo. Some of you may remember his enlarged PA's from when he was in the NICU and had to lay prone 24/7 until his heart was repaired...they were THAT bad! Well, after his full repair we kind of forgot about them because his surgeon was not concerned. He had that CT scan today and we did not get the best results.

I will try to explain the best I can but some of it is very confusing to me as well. We sat down with Aiden's primary pulmonary doctor and his ENT today. BUT we still have to speak with his cardiac surgeon before I will have all of the information. So far we know that Aiden's pulmonary arteries are still huge. They are so dilated that they are literally crushing his airway. We knew before the scan that Aiden's trachea was collapsing but the CT scan showed that not only is it pressing against his trachea but it's also crushing his airway (where it splits from his trachea to his lungs). I can not tell you how shocking it is to see pictures of your sons pulmonary arteries crushing his own airway. And by crushing, yes, I mean it disappears for a minute on the scans...ummmm hello, how can air get to his lungs??!!! SO, this is a huge problem. First of all, Aiden is a miracle! It is a miracle that his body has compensated for this for 16 months!!! But it's also heartbreaking thinking of how much he's struggled. There is no doubt in our minds that every second of Aiden's day and all of his energy have been spent just breathing. (This could be why he isn't growing too).

What does this mean for Aiden? Well, we don't know yet. We know that this has been a problem since he was in Mommy's tummy (we knew at 18 weeks that his PA's were huge-yikes!). But instead of getting smaller like his docs had hoped, they only got bigger. I am honestly in complete shock. I can not even count the times I have told people that Aiden's heart was his "easy" medical challenge out of his list of diagnosis. He has had numerous echo's and tests and nothing ever showed up. I've always considered Aiden's neuro issues to be his primary "problems". I am so mad at myself for dismissing his heart so much. We are now learning that it has basically been the problem all along :( I am still questioning how this was missed too. It's a pretty big problem, why are we just addressing this at 16 months old??? That's a post for another day!

I am just devastated tonight at these results. I feel like I grieved about this during our pregnancy when I was told how bad his heart was with his large PA's, then was given so much hope after his heart repair and told he was "heart healthy" and now we are going down this path again. I feel like the "re-grieving" is worse than the first time. My precious boy has been through so so much and now it seems like we are just getting to the worst part yet.

From what I understand, this will be Aiden's biggest challenge yet in his little life. Not to make light of it, but it seems that his brain surgeries were easy compared to what we are up against now (and I thought those were pretty traumatic). Right now we basically don't know if this is operable or not. Without speaking to the cardiac surgeon, his doctors can give us a few examples at this point at what could happen. 1) Aiden will have another open heart surgery but could still be vent dependent for a while (or a long time) because his airway may never recover. Or 2) they can't do the surgery and Aiden could be vent dependent the rest of his life and we don't know the prognosis. Not only is his airway being crushed but his left lung is enlarged quite a bit. It's a catch 22. Aiden needs the ventilator to push pressure into his airway to keep it open but it's expanding his lungs. And because the airway is still collapsing the air can't get back out of his lung so he can't expel it thus causing it to expand. Over time it could continue to expand and push his heart and other organs over to make room.

I don't know how quickly we will hear from the surgeon on what he feels is appropriate for Aiden but it should be soon. I am so numb and in shock still. I am still trying to wrap my mind around the fact that my sweet little Superman is now ventilator dependent. My mind is swirling and I am rambling on an on. But our Aiden is strong and we know that God will see us through this. But he has some big obstacles to overcome and we have no idea what God has in store for Aiden's life. It's the first time in a long time that I have felt this scared and worried about Aiden's health. We've done brain infections, decompressions, and trachs but this is such a different fear. It's the first time I think it's finally hit me that I don't know how much time we have with Aiden. His health seems to decline weekly so it gets overwhelming sometimes. Tonight I am just sad. Tomorrow might bring sunshine and rainbows but tonight I am grieving for my son. The thought that medical equipment might not be able to fix this is almost more than my Mommy heart can bear.

My Lord brings me peace and comfort but there are days that I just have to be sad. My baby fights so hard just to breathe, I want to take away the struggles for him and let him be a toddler and just play! But God gave him extraordinary strength and will for this life. I could not be more proud of my little fighter.

Aiden's always working hard...even in the hospital!!

Two of Aiden's favorite nurses wishing him good luck for his CT scan! LOVE!

Sunday, November 11, 2012

Still here :)

Aiden came home from the hospital after his tracheostomy a few days before Halloween! Life has been busy and hectic since then so blogging was put on the back burner. So this is just a quick update! A few days after coming home we all came down with TERRIBLE colds (like, Ashleigh missed 5 days of school and had walking pneumonia kind of sick). Plus Trachs+Upper Respiratory Infections = YUCK! So far everyone has managed to stay out of the hospital but we are all still coughing up a lung so I am not giving the all clear yet.

The first week home with Aiden and his trach was rough. I was already completely and utterly exhausted and we opted out of nursing care (for now). For the most part my husband and I are taking shifts at night staying up and watching Aiden. Aiden is on the ventilator at night so we are mostly watching for: making sure he doesn't pop the vent off his trach, making sure none of his tubes accidentally become disconnected, watching that his actual trach doesn't "fall out" and making sure we are suctioning him enough so he doesn't get a mucous plug that would block his airway. Our biggest fear is if we doze off and something happens that we won't hear the monitors going off. They aren't as loud as you might think (when you are awake they are loud) but they aren't even as annoying as an alarm clock so you can't ensure that you will hear them if you are sleeping :/

The first week of caring for the trach was rough because we were still getting used to cleaning it and he needed suctioned like every 30 was exhausting and stressful. My first outing with Aiden ended in many tears because I all at once realized that my son needs a trach in order to survive and it is a HUGE responsibility. I hate that it took an outing to the cardiologist to realize this and was embarrassed by the tears that just wouldn't stop coming but I felt much better the next day and have not looked back since! It was just overwhelming packing Aiden and his equipment into the hospital by myself (he comes with a TON of stuff now), plus Aiden is really loud-no, really! He sounds like Darth Vader now! To top it off, his suction machine is SUPER loud and it was malfunctioning that day which took longer to suction him which meant even more stares. I don't mind people staring-I am not one to ever get embarrassed by stares or even angered by them, especially when it comes to Aiden but I did get a little red faced because we were being so loud! It wasn't the trach that had me embarrassed, it was that Momma couldn't work the machine! It was like if you were strutting yourself in a really great pair of heels at your high school reunion and trip in front of all your former classmate-yep, it was that kind of embarrassment.  Like "cmon lady, don't carry around a suction machine if you don't know how to use it" LOL Since then I have come to terms with the fact that equipment will malfunction, Aiden will never pack light again and the days of  being a quiet family are gone!

I have learned many things over the past few weeks and will share more life experiences on the blog as I have more free time! I will say though, I may not "like" the trach, but I sure don't hate it and it's getting easier every day. As Aiden adjusts, so do we. I now realize that it is our responsibility as a family to raise awareness for trachs! It may sound silly or odd, but true. So many people (including us pre-trach) have misconceptions about trachs-even adults that see Aiden out now with his trach have no clue what it is. So we will raise awareness....trachs aren't just end of life devices, not just adults have trachs, and if we can teach one person about trachs so that they can be kind when they see someone out in public with a trach then we have accomplished something! We are new on this part of our journey but so far we are not letting a trach hold us back or control our life.

So far, my biggest sadness with the trach...
1) The thought that Aiden can never go swimming, run through the sprinklers, play at a splash pad etc.  (I think I grieved for these things more than I did then when I found out Aiden may never's very strange so I had to share with you on some of the things that parents like us grieve over-sometimes it's the "little things" that really break our hearts for our children)

2)Aiden can no longer make any noises...unless you consider gurgling and Darth Vader noises! Aiden no longer makes a can't hear his coos and you can't hear him cry. I even miss the sound of his little sneeze. :( I knew this would be difficult but I will admit, it still stinks! He cries, but no sound comes out. Heart.Break.Ing! When he first came home he was still getting used to it himself and seemed confused that he couldn't hear himself but now he's pretty used to it and I am kind of sad to say he has just kind of given up on crying for the most part. He fusses around a little but he definitely doesn't attempt to "all out" cry anymore. I guess he deals with things in his own way...BUT instead of letting it defeat us, we have just increased the amount of time we spend signing with him every day and use sign language as much as we can. I CAN HONESTLY SAY THAT IN THE MIDST OF OUR STORM...DON'T LET IT DEFEAT YOU!!! You can make a choice to lay down and shake your fists that life is not fair or you can choose to pick  yourself up and think outside of the box because you know what? Sometimes it's ALMOST as beautiful as the other side! Aiden attempted to sign "mommy" yesterday for the first time and it made me cry harder than I think him actually saying it would have! He is still joyous without his voice so we will be joyous with him!

3)Suctioning. It's still not my friend but I wouldn't say we are enemies either. Suctioning at home isn't so bad, except the part that I have to wrangle Aiden AND a WubbaNub every time he needs suctioned! But out in public is a tad more difficult...the machine is loud (think of what it sounds like when someone is running a leaf blower, yep, that's a pretty good comparison!), the machines dial that determines how strong you will suction never likes to stay in place so every time you turn it on you have to readjust the power which means it takes even longer and disrupts even more people that are trying to have a lovely tea with their friends, and I have to make every attempt possible while in public to make it as sterile as possible while suctioning him-oh boy! So while you might have walked into Target with everyone ooohhhhing and aaahhhhing over your adorable little baby that only saw him as a super cute baby will have now drawn crowds with your darned suction machine and children's services will have already been called because people will be convinced that you just finished torturing your child (even though they slept through the entire ordeal).

So you see, there ARE a few things that I am not crazy about with the trach, but that's about all I got. I can't complain too much more about it. I don't find it "ugly"....I think Aiden could wear ANYTHING and still be the cutest baby EVER!!! I don't find it too terribly hard to take care of. I don't find his new Darth Vader sounds to be too distracting, unless Walking Dead is on, then Daddy had better be holding him so I can hear what's going on ;) And although I am sad that Aiden can never swim with a trach or talk (there ARE devices that can assist with speaking with a trach but Aiden still can't have one-it's called a passy muir valve-so for now he can't make noise)...there are plenty of things he CAN do! He recognizes who we are, he smiles ALL the time, he can suck on a binky, he can hold toys, he can move his legs, and he can soften more adult hearts than any one I have ever known. Aiden is a gift in so many ways and if his gift includes a trach...I will gladly take it! We are 4 weeks out from Aiden's tracheostomy and I don't hate it yet, I would say we are doing good!

So much for my "short" update ;)

My dino (Trachesaraus) has a trach like me!!!

This old trach can't keep me from smiling!