7 days

Ugh...saying that makes makes me want to throw up....7 days. It can't be possible that almost 8 weeks has gone by since we heard the news that Cameron was going to need this surgery. In 8 weeks he has made some amazing progress. He can crawl, and stand to pull up. He cruises around on the couch...not alot or very fast, but he does. He says mama, and now is starting to mimic the b sound. He was the cutes caterpillar ever for Halloween, and if it's possible, I love him more and more everyday. But in 7 days they are going to take my baby from my arms for his open heart surgery. Don't get me wrong...they will probably have to pry him from me, but however it happens, November 10th will be here before I will ever be ready, and right now I'm scared. I visited my OB yesterday to see if she thought some meds would help me with my anxiety. She gave me a prescription for adavan and cimbalta...yes that's right...a medicine for depression. Am I depressed? I asked my OB this in a way that implied I already knew the answer...so she just gave me the prescription and a hug. We have a great relationship, she and I. She saw me through the last 10 weeks of my pregnancy after finding out about Camerons syndrome and boy was I a hard patient to put up with...so on several occasions I came to my visits with her bearing gifts! She was amazing through my pregnancy and is still amazing when I go to her for this type of thing. I feel so ashamed. Asking for medicine to help with my issues....who does this? I mean before I had Cameron I had a pre conceived notion that people who took depression meds or pills for anxiety needed to man up and realize how to deal with it....NOW I want to apologize to all those who suffer from depression and anxiety because I realize how real it is....how completely real it is. But still it's such a humbling experience for me. I'm not this person. I am a happy, go with the flow, bubbly person....not this person that I have become. The sad, scared, anxious, depressed person I am is not who I was, and yet I feel so close to this person that I am now. It's a crazy battle between my mind and my heart.

I'm gonna do this. I'm going to go to Boston and I'm going to put a smile on my face for my child, and I'm going to beg and pray and plead. Then I'm going to do those three things some more, until I can't do any of them any longer. I'm going to pretend that I'm grateful for the time I've had with Cameron, and act like I have full confidence that everything is going to be just fine! But in reality, I'm selfish....I'm not grateful for the 14 months I've had with cam...I WANT MORE. I don't have full confidence that everything will be fine...in fact I'm scared to death...about everything. I do have confidence in the Dr's, I do....I am just so scared. But I will take my pills, and I will take Cameron to Boston, and I will do what I have to do. I will do it because I have to. I have to do it.

Yesterday I was feeding Cameron, and we were playing and he was just smiling away...I was telling him to say mamamamamam...and then he was laughing at me because I was dropping my head toward him and raising my voice really high....and in that moment...I realized I was crying. I had a stream of tears streaming down my face because I'm not ready to give him up...and even though this surgery isn't something that has been expressed to us as dangerous or anything like that... it's still heart surgery...It's surgery. And surgery, even though it's a huge part of our life is scary, and heart surgery is really, really scary. So when I wiped my tears and looked at Cameron, he was looking at me differently. Like he knew that something was wrong but because he is only 14 months he didn't have a reaction like an older child might...instead just a look. And in that moment I realized I needed to get it together. I needed to be strong for Cameron because he is strong for me. He endures these surgeries and comes out fighting and that helps me. So I need to be that for him. And I will.

So Monday evening we are leaving to make this trip to Boston. We are heading up North to get our baby boy the best care available and to make sure that he is where he needs to be. I will try to keep everyone updated on our progress and the events that happen via my blog, but please keep my little guy in your prayers and he fights through yet another battle. He is warrior Cameron, and he will be amazing!

2 Weeks Away

Today is the two week mark. Surgery somehow keeps getting closer and closer. Funny how time works like that. I'm not really feeling anything yet. I have a little bit of anxiety if I let myself think too long about it, but for the most part I have been staying pretty busy with work, and other things, so that my mind doesn't take me where I don't want to go. I do find myself very bitter towards Paul. I think that is my way of dealing with fear. If I'm yelling, I'm not crying...sounds pretty rational right? I hate that Paul is so much braver than I am. I want so much to be stronger and not so emotional about all of this. I know he is scared, but he is also very brave. He is very positive, and doesn't really put up with my not-so-positive outlook. Instead I get the lecture of "We are going to Boston, they are the best, he is in the best possible hands, and he will be fine!" I need that lecture. So I'm blessed that he is the stronger one. On the outside I look strong too. So maybe I can convince my heart to let my outward appearance win, and then I could be strong on the inside as well!

It's going to be ok! Cam is going to be ok, and our family is going to get through this. We are a family that deals with surgery. We are a family that deals with alot of things most families couldn't imagine dealing with. We are "that" family. And I hate that sometimes. I hate it, and then I LOVE it. I hate it because when people label us "that" family...you know the one who others look at and say "wow, their life must be so hard, and poor them." I hate that. But I love that we can be "that" family because, we are just that....we have a uniqueness to us. We have a love that not many get to experience, because we have had to experience alot of non typical things. We have a child that breaks us down, and builds us up, and always makes us the proudest parents in the world. So when we are "that" family...I love the term....it's the other times when I don't.

So at two weeks out, I'm still ok. Cameron is hilarious. He is into everything. He is crawling, and pulling up to stand! He is what makes my heart swell with pride every time I look into his beautiful blue eyes(that he got from me!)I am filled with joy knowing that he is mine, and that he loves me back. I am filled with awe and admiration when I look at his precious body that is filled with scars knowing he will have more, but also knowing how amazing he is for having each and everyone of them! At two weeks out, I'm praying. Yes...I have started praying again. Maybe from fear...maybe because deep down I know that God loves us, and that he will ultimately take care of us, and that Cameron is one of his chosen. I'm not going to say that my prayers are whole hearted yet, but they are flowing. So your continued prayers are still much appreciated!! At two weeks out.......

Getting Closer

So It's exactly 3 weeks until Cam's heart surgery. Before surgery was a part of my life 3 weeks would have seemed like a long time. Now it feels like it's right around the corner, yet it can't come fast enough. I find myself at times in a sweat because I allow myself a second to think about what I'm getting ready to face, what Cam is getting ready to face. Usually the days aren't bad. I usually don't think about it. But on the off chance that it comes up, I find myself holding back tears. This is sad because if I'm doing this now and we are still 3 weeks out, I'm afraid of how I'll be as it gets even closer. I look at Cameron sometimes and think that I'll just postpone the surgery. It isn't an emergency, and if you didn't know something was wrong from me telling you then you would never know he had a heart issue just by looking at him. He is coming along so well! He started crawling, something I thought he would never do, just because I thought he would by pass that stage. He says mama, and it melts my heart. He claps his hands when we sing if you are happy and you know it. He cracks me up all day, and has a smile that fills me with pride to be his mommy.

So I think we will just run away...haha...no, just kidding! I know this has to happen. I know that it NEEDS to happen. I just can't bring my heart to agree with what my head is telling it. I have come to the realization that I can't change the things that Cameron has to go through. I can't change his needs to fit my wants. But sometimes I dream that it's that simple. And when I wake up and it becomes the terrifying reality that it is, I begin to feel weak and heartbroken. I know Camerons life is hard. But why? And I know I am supposed to just have faith that this is our ultimate journey together. But why? I promise I'm not always this pessimistic. In fact usually I have no other look on my face but a smile. Cameron deserves nothing less than to have a mother who doesn't mope around all day. But I swear to God sometimes that is all I want to do. I'd even like to send invites out...Hey everybody, come to my house for a pity party...good alcohol and plenty of whining and complaining going on! Not sure how the turnout would be, but at least I might have a couple of people celebrating in my misery!

I know, I know. God has a plan, and he will bring us through. Cam has a story to tell, and everything happens for a reason. I know! I'm not saying that I don't believe that everything is going to be ok...I do. I believe that Cameron is a warrior. He will get through this, and in turn get me through this. I believe that my life is a gift. That Cameron is a gift, and that Paul and I have been given this gift because we were chosen. I just get so damn angry that our gift keeps getting unwrapped....metaphorically of course. But in a sense that is how I feel. I feel like we get through one hurdle just to battle another. At some point my faith and beliefs are going to decrease, and then what. I'll just be a bitter, angry person with no faith and no hope? Well I hope that doesn't happen!! I hope that through this I become stronger...that is what is supposed to happen right? Right now I feel weak. Not stronger.

So as we are 3 weeks out this is how I feel. I assume some meds are going to be needed in my near future. I assume that I'll need alot of prayer, so I'll ask ahead of time. I pray, I do. But it's sad, my prayers. They typically consist of "God, please keep Cameron well until surgery, and please let everyone be prepared and let Cameron sail through this." Then I usually go on to question God and then it usually ends up with me apologizing and begging for him to just keep Cameron safe. Not really a prayer I'm proud of...but how it's going these days. So for all of you out there that feels a little closer to our savior if you wouldn't mind sending up some prayers for Cam, that would be greatly appreciated. He is my life. Paul and I do feel so blessed to be his parents and anyone that knows him, knows why. So please just keep him in your thoughts as this time gets closer. Like I said before, he is a WARRIOR. He is Warrior Cam :)

DATE SET

So for the past 3 weeks or so I've been on hold with Boston. I had to have Brenner send all of Camerons information to them, and somwhere along the way it ended up taking forever before Boston finally recieved his echo and reports. But finally about two Friday's ago, a cardiologist from Boston called to talk to me about Cam. He was very kind and said that he agreed with the diagnosis from here, but felt that Cameron wouldn't be a candidate for the cath procedure because for his diagnosis they really don't have a cath procedure that has proved effective in completely treating it with one procedure. So the answer he gave us....dun dun dun....OPEN HEART SURGERY. Was I suprised? No. Cameron rarely takes the easiest route...he likes the trickier road. Was I dissappointed? Of course. I can't believe that my 14 month old will need heart surgery. It doesn't seem possible. or fair. Have I ever mentioned how crappy my kid has it? I can't say that I'm angry, because honestly I'm too sad to feel angry. I'm sad and scared. But I do have alot of faith in these Dr's in Boston. I have faith that even though i'm having a hard time understanding God's reasoning right now, that he has big plans for Cameron and so I am certain that his healing power will be with Cam. So the date has been set for November 10th. Seems so close yet my heart will skip beats until the day is finally here and over. Although I don't want to hand over my child for this surgery, since I know it has to happen, I want it done and over. I want to stop feeling so depressed, and I want to start enjoying life. Right now I publically put a smile on, but secretley I am screaming on the inside. What kind of wife and mother would I be if I just moped around my house all day? Or what kind of proffessional would I be if I went to work with a huge frown on my face? So I suck it up, and do what I have to do. I feel like I have no life. I have nothing to look forward to but surgery....and even though I cherish every single day I have with Cam, I can't help but want all of this behind me. The surgeries, the pain my sweet boy endures, and the constant heaviness i carry on my shoulders. I want it all gone! So NOVEMBER 10th!!! LET'S DO THIS!

Step 2: Acceptance

Hahahah....yea right, I'm pretty sure step 2 is not acceptance...but I don't think I am consistent enough to go through all 12 steps...or however many there are! I titled this post acceptance because I think that is where I am right now. I think that after the heartbreaking news I received last week about Cam's heart that I was in such pain and anger that I would have called that step, THE I HATE EVERYTHING STEP. I pretty much did. I hated that God kept piling on more and more, I hated everyone that didn't know how I felt, I hated myself for hating everyone. I felt alone, and scared, and did I mention alone? I still feel alot of those feelings, but now I am able to deal with them a little more appropriately. Last week if I saw a commercial that might have contained a small sad moment I was in tears. Usually not the way I handle things. Crying is not really my way. But last week I'm pretty sure I could have filled the bathtub with my sobbing.

This week I'm still angry, still confused, and still very scared. However, I'm also able to look beyond and see that this is just another step in Camerons journey. Another hump that we will have to overcome. I hate that he is the one actually having to go through this process, but we are his support, and I need to be that for him. If I'm always wailing "why me?" then I won't make for a very good support. He needs me to be strong and brave. He needs me to be there and hold his hand and smile when he can't. He needs me to sing to him, so that he knows I'm there, and if I'm off in the corner somewhere crying and cowarding away then how can I be what he needs me to be? So right now I am accepting that Cameron is just that....Cameron. He comes with alot of different needs, and is quite the complicated child. But he is my child and so I owe him everything he needs.

This stupid heart surgery scares me to death. It scares me the most because I don't like the idea of them actually stopping his heart. Even though it's for a brief period, when they work on someones heart they use a bypass machine so they can stop the heart and so that it is still while they repair whatever it is they are repairing. I don't like that. It also scares me because this isn't part of the deal. Cameron has Apert Syndrome. He needed head surgery, hand surgery, foot surgery. NOT HEART SURGERY. I don't think one should have to have EVERYTHING on their child surgically altered. So far the only part of Cam's body that will possibly be spared of surgical intervention will be his elbow. I'M NOT EXAGGERATING. This seems too much. Too much for one small, precious child. So yes I'm scared. VERY, VERY SCARED. The good thing is .....Cam is not scared. Nope. Instead he is beautiful, sweet, and has no clue that once again he will have a major surgery to repair he most precious heart. But then he will wake up, and that is when he will need me. He will need me to tell him how strong and brave he is. He will need me to rub his little arm and his Rosy little cheeks. He will need me to accept that this is his journey and this is just how it is.

So I accept. I accept this life that God has chosen for us. I accept that Cameron is going to send me to an early grave from worrying so much. I accept that alot of my life is going to be spent making sure that when he comes out of surgery that I'm there being his mommy, and singing his favorite songs. I accept. I'm not sure that this will always be how I feel. I'm sure that my heart can only "accept" so much. But for this moment....for this surgery....for Cameron, and for my sanity I'm trying to accept that this is our life. This is our most beautiful, wonderful, and crazy life. I ACCEPT!

Fighting with God

So today I have had a few choice words with my creator. I took Cameron to a routine Echo today for his silly heart issue. He gets an echo every 6 months to make sure it stays stable. He technically wasn't due for this echo until October, but since we had his hand surgery coming up at the end of the month we wanted to get it over with before he was all casted up and uncomfortable. Anyway, this morning we drove to the outpatient cardiology clinic, had his echo, waited for about 20 mins in the room for the Dr...thinking I would be going home and still somewhat stress free about his heart issue.....NOT THE CASE!! Cameron has something called Sub-aortic Stenosis. It's where a part of the artery under the mitral valve becomes thick and it causes a narrowing in the space where blood flows from the right side of the heart to the left. In aortic stenosis this narrowing causes decreased blood flow. Sometimes it's very minor and only requires monitoring for at least a few years, and then is corrected with surgery when it gets to a certain point. Cam has reached that point. I was told at his last echo to plan on this coming somewhere between two and three.....NOT NOW.

Honestly I feel numb. When the Dr. told me that it was worse and he would need to have surgery within the next couple of months, I cried....but then I became numb. It was like I was on auto pilot. I got the information I needed, and left. I realized I was upset when I ended up in Charlotte, simply because I just started driving in the wrong direction and didn't stop until I realized it was going to be a really really long ride home if Cam wakes up and wants to eat. I got home, I called Paul, I called my parents, then I sat down and had one of the most volatile conversations with God that I can remember. I questioned, I yelled, I said bad words, and I told God he was making it really hard for me to love him. And that is how I feel right now. I feel like God is forsaking me, and even though my mind knows that he is all loving and the ultimate healer, my heart says that my most precious baby is having to go through too much and it needs to stop.

So for now Cam's hand surgery has been cancelled yet again. We will hopefully be scheduling this heart surgery for some time in the near future, and my faith is wearing extremely thin. I feel like I keep lecturing myself about God's mighty power, and how this is all a part of his wonderful, beautiful plan. Well right now his beautiful, wonderful plan is looking pretty SHITTY!!!! I feel like God keeps letting me down...like seriously what do I have to do to prove that I'm in this...You gave me Cam...I embraced him...I have even learned from this experience about unconditional love....TRUE LOVE.....then you throw some curve balls in their...extra bonuses....couple of extra surgeries...and illnesses.....I still follow you...I pray to you, and trust in your ultimate all knowing greatness....and in turn...This....another horrible thing. When does it end? When I no longer have any faith? I know things could be worse...I know others suffer much more sadness, much more pain. But now that it has been happening to us, I'm not sure why it's still considered part of God's plan. I'm just confused. Scared and confused, and angry.

Please say an extra prayer for our sweet Cam. Pray for his precious heart, and if you don't mind throw a couple extra ones in their for me because I'm having a hard time praying right now.

Craniofacial awareness month!

So September is Craniofacial Awareness month. Last September, we were still in the hospital with Cam but he was getting better and we were trying to prepare for coming home. I do remember one of my mom friends whose little girl has aperts telling me about Craniofacial Awareness month, and how they would send me some bracelets so that I could hand them out to family and friends. I also remember at that time thinking all I want to do is get my baby home and try to grasp some sort of normalcy in my life. I remember wanting to get home and hide. Not really because Cam looked different, but because in the NICU I really didn't have to explain Cam to anyone, everyone there also had a sick baby, but coming back to reality meant that everyone Else's babies were fine and mine wasn't. So in a sense I started realizing how much that I may miss the NICU. When we did get home and get into somewhat of a routine I of course couldn't wait to take Cam places....but at first it was only to the places where people already knew about him.

I distinctly remember the first trip we took to Walmart. I kept a blanket on him and in his car seat because even though I wasn't embarrassed of my sweet baby I was embarrassed of the stares. I didn't know how to handle them at first. I didn't know if people were looking and thinking...hmmm wonder what that sweet baby has? or if they were thinking that mother must have done something for him to be like that...or she must have passed something to him. All of them made me feel weak. Like I couldn't possibly be a good mother because I was ashamed of my baby....Well it passed quick. Soon enough I didn't care what people thought, I loved Cam so much that it didn't matter. But I do appreciate those that don't just stare weirdly at us, but instead ask us....hey what is going on with your kid? anything but rude staring...I hate that.

So now I have a whole new appreciation for this month. I appreciate that there are people everywhere that look different. Honestly...I come across perfectly normal...non-syndromic people that look a little different from time to time....what I have learned is that judging others on looks is cruel. It doesn't serve a purpose, and until we know someone we can't make judgments on their looks unless we choose to be shallow people. I understand that Cameron will forever have people question his deference, but it's my hope that through Craniofacial Awareness that we spread the importance of acceptance and understanding. Cameron has changed my life in so many ways, but one of the best ways has been in my own selfishness. I have learned how to accept others difference's and more importantly I have learned to never judge someone based on their looks. I feel so blessed that I have Cam to continually remind me of the important things in life. So I encourage everyone to think about the way they judge others, and how they stare when someone looks different. Because like our motto says behind every face is a heart, and that is such a powerful statement that I'm glad to be a part of this crusade to inform people of difference!!

Cam Turned 1!!!

Well this past Monday, my sweet, most precious Cam turned 1. The day was filled with so many emotions, but most of them were of graciousness. I'm so grateful that I've been able to experience this past year of my life with the best baby. If I had been asked a year ago today if I were grateful about the hand I'd been dealt, I would have laughed in your face and thought...Really, why would I be grateful about watching my baby laying in a hospital bed going through so much already? But now I'm ashamed of the old me. A year ago, I was doubting God, feeling sorry for myself, and somewhere deep down wishing it was just a bad dream and that I would wake up and go back to my old life. Now, I'm so amazed at what Cameron has taught me. I feel that when God chose to give us Cam that he was blessing us and not cursing us. Cameron has been the most amazing testament to courage and strength. He has been the one to save me and not the other way around!!

A year ago, I was perplexed as to how us having Cam was fair. I felt so selfish and jealous. I remember feeling like I just wanted to crawl in a hole and never come out, but yet putting on a happy face in front of others so that they wouldn't think I was some kind of horrible mother. I wanted everything to end. I'm different now. I look back a year ago when Cam was so helpless and precious laying there in the little hospital crib. So many wires, and so many machines helping him stay alive. It was devastating. Now I look at Cam and am amazed at how well he is doing and how much he has taught me. I am now a nurse, doctor, geneticist, physical therapist, and at the bottom of my resume a mother! I hate and love both at the same time all the things I've been forced to learn about, but I'm stronger and more aware because of it. Would I give it all up for Cam not to have to go through everything he has and will...100% but that isn't our journey! Cam is Cam, and I'm the most blessed mommy in the world that he belongs to me!

Cameron Joseph is one now, and here is what he is doing:

He can sit all by himself unaided.
He can get from a sitting to a floor position.
He can stand holding onto a table or other objects.
He SMILES all the time!!
He babbles alot...no words yet
He can reach for us to pick him up
He can clap my hands
He can clap his hands if you hold one
He can give kisses...and they rock!
He smacks his lips by imitation
He can turn pages on a book
He loves to eat
He is eating stage 3 baby food, and frozen yogurt is his favorite
He loves baths and splashing the water
He loves laying on mommy and daddy's bed
He loves looking at himself in the mirror
He can hold his own bottle...but usually won't because he likes me to
He gives great high fives!
He smiles when you hold up a camera and say cheese!

He is the best sleeper ever, and is very laid back and chill. He has the best temperament and is the most beautiful child in the world!

So here's to you Cameron Joseph. For one year down and many more to come. You are the best thing that has every happened to me and I want you to know I couldn't love something or someone more than I love you! You have my heart little boy, and I'm so glad I get to be your mommy!

Sometimes Life SUCKS!!!

So this past week Cam has been trying to conquer his cold, and I'm thinking it's on the downhill slide, so good news there! On a more sour note, my dad left for Iraq this past weekend. Well not really Iraq just yet. He is in Texas right now and will be there training for a month and then will fly to Iraq. Still he is gone and won't be back for a whole year. I thought last year when my dad told us he would be deployed in July 2011 that by the time it came around he would have a change in orders and would not have to go, but little did I know that my dad volunteered to go over seas. You see my dad is one of those men that has worked for everything he has. Did he make mistakes growing up...ABSOLUTELY, but the minute he turned 17 he enlisted in the US Army Reserves, and has been with them ever since. Usually when people serving have served their required four years, they move on or at least have another full time job and just do their one weekend a month requirement, but not my dad. He enlisted full time and his job was directly related to the Army. The type of job my dad does did not require him to serve in Iraq, but because my dad knew that others under him had served and looked up to him with respect that if he didn't go then how could he identify? Thus where we are today.

Today is a hard day for me. Today is the official day that my dad is gone. Yesterday Paul, Cam and I attended a ceremony in honor of the troops that are deploying, and most of them aren't leaving until Wednesday, but my dad chose to be on the advanced crew so that they could make sure everything is OK before the others go over. So today my dad boarded a plane and will be gone for no less than 12 months. Possibly more. This weekend was hard. I watched my dad tear up as he kissed Cameron goodbye, something I have seen my dad do only twice. Once when my grandpa(his dad) passed away, and once when Cameron was born. So seeing my dad become vulnerable only made this that much harder. Cameron could do no wrong in my dad's eyes. He loves him so much and I know that not seeing him for a year must be really difficult for him, and for one minute he admitted that he didn't want to go. Talk about a sob fest!

I guess today I'm just sad. Sad that my dad is in Iraq, where people get killed. I'm also sad that my sweet Cam won't get to see his grandpa for a long time. I'm sad that I won't see my dad for a whole year. I'm sad that crappy things keep happening to me.......I know, I know, this is starting to sound like a whoa is me type complaint, but it kinda is. I am either having some shitty luck or this is my season in which God is testing me. And God if this is you testing me, then could you go ahead and get the freak on with it? I'll be glad to do whatever, but just give it to me all at one time. These events that keep occurring in my life have got to start improving right??? But then again I go back to how grateful I should be. I should be so grateful and proud that my dad is fighting for our freedom and that I get to be a part of such an amazing mans life. I should be grateful that in less than a month my precious Cam who has had the craziest life will be one! I should be grateful that I have an amazing family and friends who are so supportive and whom I love dearly. AND I AM GRATEFUL. But I'm also sad. And tomorrow will be different...better, I hope! Tomorrow my dad will have been gone for over a day, and tomorrow will be one more day that has passed and one more day closer to his return. I know this.. I know time heals and that time goes so fast, so tomorrow will be better.....BUT TODAY SUCKS!

Snot in July

Well if anyone can have a cold in July apparently it's my kid. My poor Cam can't catch a break. He got his pesky tubes put in about two weeks ago, and low and behold shortly after got yet another ear infection. Lot's of yucky stuff draining from his ears....luckily the Dr. says that because of the tubes it won't cause him alot of discomfort, so I guess that is a positive? And of course with every ear infection there comes the plethora of snot. Just pools of it, and the coughing. So my sweet little boy is sick. You know I can handle multiple surgeries, and I can handle the anticipation of more surgeries, but where does the list of bad things end? I mean, it's not like his immune system isn't getting stronger. I don't keep him secluded except for the weeks leading up to a surgery, I load him up on probiotics, I make sure to expose him to germs so that he can build a tolerance, and I also know when to break out the germ-x. So rationally he should not be sick in July, or at least he should get the runny nose, and a few days later be able to fight it off, but no, not my Cam. Instead it's about a two week process to get back to where snot isn't a part of our daily routine.

I guess I need to be grateful that for the most part when he gets a little virus like this that his body is usually able to fight it without a ton of meds. He continues to get the ones that are part of his daily routine, but we try to get him all better without always resorting to steroids and breathing treatments. Mostly because I think that allowing his body to get over the virus without too many interventions is the key to him not getting sick as often. Maybe my theory is totally wrong, but I guess that is just how I rationalize not getting him on any more meds than the ones are completely necessary!

Today has just been one of those day where venting about my sick kid is what I need to do. I love my sweet Cam, but I hate days like today. I hate that not only does he have to be sick, but because his anatomy is so different it takes such a tole on his little body....and mommies. Hopefully as he gets older these minor illnesses will seem even more minor and life will function a little more normal. But for now...anyone have a xanax? :)

Tubes are in!

So this week has been busy. Monday was the 4th of July, and we celebrated with great friends, but Tuesday morning I woke up to one very unhappy Cam. He was running a pretty high fever and just being super cranky, so after giving some mommy love and some Tylenol I decided to call the Docs just to see what they suggested. And of course they wanted me to go all the way to Winston to the ED, since he has a shunt. Well I didn't think he was having a shunt malfunction, but anytime that he gets a fever and it can't be explained then they want to see him. So I called Paul and the three of us headed down the mountain.

We arrived at the ED and spent all day there just to receive news that he must have a little virus because all of his blood work was fine and he wasn't acting like a shunt malfunction. So after we spent 7 hours in the hospital, we left only to stay the night in Winston at a friends house because Cam had appointments early the next morning. So we stayed the night at my friend Catie's house and the next morning went to see the ENT for what we thought would be a cancellation of tube surgery since he had been running a fever and apparently had some virus.

When we got to the ENT's office we were surprised to learn that she wanted to still proceed with putting tubes in the following day and doing a hearing test. She assured us that everything should be just fine, and that even if he had a fever that it would be such a minor procedure that everything would be ok. So we were set with a time of arrival for 6 am the following morning and sent on our way.

We decided that since Cam sleeps horribly away from home especially when he doesn't feel well that we would just drive home and return the next morning....today. So this morning at 4 a.m we got up and headed out. We arrived at surgical waiting at 6 and we were in the O.R. holding room by 7. They took Cameron back around 7:45 and by 10:30 we were heading home with one groggy Cam, with new tubes and a hearing test that had come back saying he has PERFECT HEARING!!! That was awesome news, seeing as how we were prepared for them to at least say he had some minor hearing loss, I mean that is super common with this syndrome, so for him to get a great hearing test result we were super pleased.

Now it's bedtime, and I have one sweet little boy downstairs in his crib snoozing away. I am super exhausted, but glad that we have one more procedure out of the way. But I know we still have many more to come, so I'm making a list of what the rest of 2011 brings as far as surgeries for Mr. Cam. Hopefully everything will go as smoothly as today went, and We can get to next year and maybe have some much needed surgery free time! Thanks for all of your well wishes and prayers for our family as we continue on this journey. Even though things like today are minor compared to things he has already been through I can't help but wish that he didn't have to have any of this and that his life and ours could be easier....but I just hold onto the love that I have for my sweet Cam and know that everyday I become stronger because of him!

Upcoming surgeries to tweak my Cam:
1.July- Possible Hydrocele/Hernia repair and circumcision
2.August- Above surgery if it doesn't happen in July
3. September- Cams first hand surgery
4. October- Cams cast come off, and possible second hand surgery
5. November- Possible second hand surgery/toe separation
6. December- Possible hand/foot surgery.

Hopefully we can get all of these in in the remaining year, that way next year can be a little less surgery and a little more fun!

It's the 4th of July

So it's been awhile since I've posted.....not alot has been happening, but this past holiday weekend we were busy, busy, busy!!! The festivities began Friday when our friends the Helms from Charlotte came to visit. They went to school with Paul and I at Appalachian, but Chelsea and I met working at a summer camp that we both did for about 3 years! They were married the June before Paul and I got married in December and they had their first child, Addie Grace on August 7Th, a week before Cam made his big debut! They came up to visit and we had such a fun time. We had my mom come and babysit the kiddos Friday night so we could have some "adult time" and we went out for a nice dinner and drinks! Then Saturday came and before they headed back to Charlotte we went to the Blowing Rock parade. Then we said goodbye and our friends headed home.

Then we had about a 2 hour break before we got ready and headed to another set of friends house to enjoy a cookout and fireworks. We had alot of fun, and Cam got to play with his BFF Stella whom he loves very much. He also got some quality time with our friends his aunt Jamie and uncle T and aunt Ashley and Uncle Daniel. He is one loved little boy, and I must say that it warms my heart to have my friends care so much about our precious Cam!

After those festivities, we woke up the next morning and headed to church, and then that evening just had some quiet family time, and rested up for Monday, the actual 4th. Monday, we went to the Boone parade, and then last night finished our day with the Bethel Blast. This is a regular 4th of July event that has free food, good music, and a wonderful fireworks display! We went with our friends Ashley and Daniel and their baby Stella, and we had a wonderful time. Cam loved the fireworks and even though he won't remember it, it made a wonderful memory for Paul and I.

Now it's Tuesday and we are resting up because the rest of the week brings more chaos. On Thursday Cam is getting Tubes in his ears, so we are heading down to Winston tomorrow so that we can see the Dr. and be there bright and early Thursday morning for what will hopefully be a very uneventful procedure. One of many I'm sure my sweet boy will need to have! I hope everyone had a wonderful 4th and please say a prayer this week for my sweet boy on Thursday!

beachin it up

Well this past weekend the Elliott's headed to the beach! We decided that since Cam wasn't having his hand surgery that we should take advantage of a free summer weekend and take our first family vacation that didn't involve a hospital stay. So we decided that since this will be my dad's last fathers day before he heads to Iraq in July that it would be really nice to spend it with him at the beach! And that is exactly what we did.

We left Friday morning around 9 a.m. for what is supposed to be a 5 hour drive. We managed to extend that to 9 hours....a very long 9 hours. Well first of all packing for Cameron was exhausting. I felt like I needed to pack his entire room in order to not forget anything important....and then all the toys I thought I needed to pack started to consume a lot of space, and then the idea of a nice stress free weekend at the beach turned into me being completely stressed about packing for the beach, and so I just packed until I was sure I had it all and then we headed out. Paul's aunt lives in Raleigh so we decided that it would be a good idea to possibly stop there along the way to break up the trip. Stopping at her house would have been half way for us, so we called her to make sure it was OK and that is what we did. It was great to get our screaming child out of his seat for a bit so that he could cool off and eat and play a little before we put him back in his seat to scream for another hour until we arrived in Greenville.

We decided to stop in Greenville, because we knew Cam would need to eat again and also because after Paul and I got married we moved to Greenville and lived there for about 6 months. Paul got a teaching job outside of Greenville and so that is where we went. I can't say that I loved Greenville, because it sucked....it was hot, and I didn't have any friends, but I did grow to like it somewhat, and eventually made wonderful friends that I still talk to! Anyhoo, after our pit stop in Greenville, we headed on down the road to the beach.

We ended up making it at about 6 pm Friday evening and boy was Cam happy when we took him to the room, took off his clothes and just laid him on the bed. He was all smiles and giggles. Then we took him down to the ocean for the first time, and let him stand in the water. He didn't seem to mind it and was loving being outside and having the ocean breeze blowing in his face.

Saturday we took Cam in the pool, and then we met up with my dad and step-mom and went to the aquarium. Cam loved looking in all the fish tanks and at all the animals. But towards the end it was definitely getting close to nap time so he had a small meltdown and so my dad bought him a toy from the gift shop to keep him happy. Little did we know this stuffed seahorse he bought him would become one of his favorite toys. So thanks dad!! Saturday night my dad and step-mom came to our hotel and watched Cam so Paul and I could go play putt-putt. It was so nice to go out alone at the beach, and to spend some quality time just having fun with each other.

Sunday, which was fathers day, was spent by taking Paul to Dunkin Doughnuts for breakfast...out of all the places he could have picked that is where he chose to go....? Then we met up with my dad at his campground and played in the ocean for a few hours, then headed back to the hotel to get dressed to go out to dinner with my parents. After dinner my dad wanted to play putt-putt so we decided to take Cam and go play with them. Cam did well and we all had a lot of fun.

Monday we headed home and again spent about 9 hours making a 5 hour trip....but all worth it. All in all we had a wonderful first family vacation. I'm so glad that God has blessed us with this sweet boy that we are able to do these things with. Even though I complain and gripe a lot about how unfair I feel about having to watch my little boy endure so much, I also get to see him experience new things and grow and smile and laugh, and for that I feel blessed!

Feeling blessed!

Well this weekend we were supposed to be spending time cuddling on the couch with our little boy and his casts that he would be getting used to because he would have just had surgery on his little fingers......however, since that didn't happen, we filled the weekend with other fun things. One of those was a fundraiser that a small group from our church did to raise money for our sweet Cam and this upcoming surgery. They called it High Five for Cam....super cute. The fundraiser took place in Blowing Rock, where Art in the Park is taking place this summer, and because our church meets in the blowing rock school auditorium, they were able to have the parking lot for the day, and they charged people to park in the spaces from 9 until for this event.

Well because we weren't at home trying to entertain a 9 month old who can't use his hands, we were able to help out! In the end they ended up raising quite a bit of money, and were also able to get the word out about Apert Syndrome through a little slip they gave people with the blog address! Needless to say we felt so blessed to have our church family reach out the way they did. When Cameron was born our church was amazing and ever since they have been such a wonderful support system, even through the times when church was the last thing on my mind, I knew that our family there was praying for Cam and lifting him up, and that made me feel like when I wasn't able to pray that someone else was doing it for me!

Even though we were only supposed to stay for the 1-3 shift for the fundraiser, since a group of our close friends were doing the closing shift, we decided to stay during that one to and go out to dinner afterwards, so that is exactly what we did. We packed up after the fundraiser and headed to chili's for some good food and conversation! Then we headed to another couples house for drinks...a perfect end to a wonderful day! And the best part was that Cam was so sweet all day, which makes it easier for mommy and daddy to be flexible with their plans. However he did decide that at 9:30 he had had enough and it was time to head home, which was fine because it had been a long day!

Today, we got up headed to church, then had lunch with some good friends then headed home. We spent a nice relaxing Sunday afternoon doing a little cleaning, and a little playing, and now it's time to hit the hay and get ready for the week. I would just like to send out a HUGE thanks to all those wonderful people that got together to raise money for our little Cam. We feel so blessed by all the love and support that you all have shown us, and the love you have for Cam. We don't have enough words to express the gratitude we have, but we are so humbled by your generosity and compassion, and we love you all very, very much!!! I hope everyone has a wonderful start to the week tomorrow!!!

Summer is here

Well yesterday was going to be the big day.....Cam's first finger separation surgery, but Cam has different plans, instead he decided he would catch a cold and put off that pesky surgery until another day. So for now we are waiting to here when that new day will be and trying to enjoy our summer. Cam got a new swimming pool, and although I can't say he loves it, he definitely doesn't mind it, and may even like it a little. We have also gotten a visit from Cam's grandparents from Florida(YaYa and Grandaddy) who he loves!!! They came up this past weekend and although we skype with them pretty regularly Cam needed a little bit of time to warm up, but once he did he was in heaven....being spoiled and held and loved! On Saturday he even got to take his first trip away from the house without mommy to the store with YaYa and Grandaddy while mommy and daddy went out and enjoyed the beautiful weather. It was a perfect weekend that ended Monday morning when we said goodbye to the grandparents as they headed back down the Florida. But we can't wait to see them again...hopefully very soon, and maybe even at their house!!

So I have some goals that I would like to accomplish this summer....They are as follows:

1.I want/need to get Cams first hand surgery over with.
2.Cam needs Ear tubes
3.I want Cam to learn to crawl
4.Go on a vacation
5.loose 15 pounds
6.Get my house painted
7.Plan an amazing going away party for my dad before he leaves for Iraq
8.Get a jogging stroller
9.Plan a huge 1st birthday party for my sweet Camster
10. Not have any unexpected medical emergencies with Cam...I need him healthy and happy!!!!
11.Get a tattoo
12.Maybe consider having another baby at some point in time....MAYBE!!

I look at this list and am in awe at how it has changed from what my list would have looked like years ago, before Cam.....not so many surgeries...:) But I feel blessed that Cameron is with us, that he is healthy(aside from his pesky cold) and that he brings so much joy to my life. Do I feel challenged on a daily basis...ABSOLUTLEY...Do I still have bad days...DEFINITELY.....Do I still question God sometimes....HECK YES, But at the end of the day I get to kiss goodnight the sweetest blue eyed boy I know, and for that time and for right now I'm grateful. So here is to a hopeful summer full of beautiful weather, wonderful friends, and hopefully some fingers!!!!

Sick Sick Sick......

Well for the past week and a half my little fun, easy going, little Camster has been a little under the weather. It started a few weeks ago with an ear infection, then last Wednesday we went into the Dr. for Cam's 9 month routine check, and found out that his ears were apparently still infected, so another round of antibiotics were prescribed. Then the very next day Cam developed a nasty runny nose and lots of congestion. This has happened before, and it stinks. It never goes the same way twice, and this time has been hard!! Cam didn't want to eat because he couldn't' breath, and well I was stressed because of his surgery that we had planned, but then we found out that he needed to be virus free for 3 good weeks prior to a surgery so no surgery for Cam....so then I was really stressed!!!

Cam continued to stay pretty sick throughout the weekend after last Wednesday so I took him to the Dr. on Saturday where he was hooked up with some steroids for his cough and an order to stay on the antibiotics. So after about four days and a trip to the ENT and pulmonologist the cough started to calm down. The ENT did say that he would probably need tubes but in reality she couldn't really even see his ear drum because his canals are so small, so she isn't sure why the pediatrician is so certain he has an ear infection because she knows they can't really see anything.....I kinda wonder that now too. Anyway, so she suggest we give him some allergy medicine along with Afrin for a couple of days. The allergy medicine we are still on but the afrin we are taking a break from so that we don't become dependent.

Well after one heck of a week with my sick little boy, he is finally started to make some forward progress. He is eating a little better, and smiling....a big thing for me, because when he doesn't smile it just isn't him and I can't stand it when he's not feeling well. He still has a pesky runny nose and a bit of a cough, but not as horrible and definitely not causing him as much distress. All I can say is I HATE SICKNESS!! It's bad enough our kiddos have to go through horrific surgeries and that they have to work hard to breath when they aren't pouring snot, but add a respiratory virus to the mix and it just causes so much unneeded stress, and quite frankly I don't think it's fair. But from what I hear these pesky colds get better as kiddos with Cam's syndrome get older, so I'm definitely looking forward to that :) For now I would just love some prayers for a healthy Cam so that we can start planning on this hand surgery so that we can get it over with and move on!!!

No new hands for Cam

So my beautiful, wonderful, sweet little Cam decided to catch a virus last week. How you ask? Well that is a good question, seeing as how I kept him detained in the house for the week befor not allowing anyone but family to visit and even then it was a germ panick with handwashing. But under some crazy circumstance he still managed to come down with a bug. A runny nose and cough. This translates to horribly congested and horrible sounding cough for Cam. So we started to panick....Oh no what about his upcoming surgery? So we asked the pediatrician to help us help Cam get well quick. He gave us some steroids for the cough and an antibiotic in case it was stemming from an ear infection. All this and we were still told yesterday by the pulmonologist that having a surgery so soon after getting a virus can cause some complications. Anastesia can cause something called reactive airway syndrome, and can cause him to display asthma like symptoms after surgery. This can result in not being able to come off the vent and a longer hospital stay. Ultimatley the choice is ours so what do we do?

Well after alot of praying and talking, we decided that although we were really looking foward to getting Cam some fingers in the next couple of weeks that we really can't risk sending him in if he is not at his best health wise. It would make us feel horrible if something happend and it just isn't worth risking that for our sweet boy. So we have decided to reschedule his hand operation in Boston. Hopefully they will be able to reschedule for sometime in July. We just ask that everyone prays that some operating time will come available and that when that time is set that Cam is ready and healthy to go!!!

So while yes it does stink that we are having to post pone surgery, we are also greatful that we have an incredible team of Dr's that are looking after the well being of our most precious boy. I just want all of these surgeries to be over...and not to have to worry about him staying well so that he can go to an operating room. That day will come and I have faith that this is for the best!

The longest and shortest 9 months of my life

Yesterday Cam was 9 months old. When I say out loud that he is 9 months old I think wow, where has the time gone? But then when I reflect on what the past 9 months has been for us, I can't help but wonder how it's only been 9 months ago that we started this journey. However, for me this journey started long before Cam actually got here. At 6 months along we found out about Cam's syndrome, and so in reality for me it's almost been a year since my life changed forever. I can remember those first few weeks after we found out like it was yesterday. I felt numb inside. Like the world was spinning so fast and at any moment it would stop and everything bad that I felt would just go away. I remember crying all the time, wishing that I could go back in time, do something different so that we didn't get pregnant. I was sure that having this baby would ruin my life. Would make me "THAT MOTHER" or we would be looked at as "THAT FAMILY." You know, the ones you always feel so sorry for and think how brave they must be and how hard it is to have a child with special needs. I couldn't stand the thought of that, and for a brief moment in my life I wished Cameron away. I wished I wasn't so far along so that an abortion would still be legal, I wished that it would ALL just go AWAY.

Now I sit mortified that I had those thoughts. I can't believe how selfish I felt in those moments. Selfish because I look at Cameron now and know he is the best thing that has ever happened to me. He is not my cross to bear, but he is what brought me to the cross. I knew God before Cam, or so I thought. I thought that I was a good person, someone people liked because I had a good head on my shoulders and concern for others. Someone that God loved because I went to church and did good things. But having Cam has made me realize I was none of those until he came along. I was those things out of selfishness...out of wanting recognition. Now, I am those things because everyday Cameron teaches me that I have been wrong all along. He has really made me realize just how precious life truly is, how that everything we are given we should cherish, and how life is so, so short. Do I have days where I still question God as to why my sweet boy has to have such a rough life....YES. Do I sometimes find myself green with envy over my friends whose babies are perfect and healthy....YES. And I even have days where I go back to feeling sorry for myself and wishing that my baby didn't have such intense medical issues. All things I pray in time will subside....and I know they will.

God gave me Cam a short yet long 9 months ago. With Cam he gave me FAITH, HOPE, and truly showed me what unconditional LOVE really means. I know that I'm better because of him, and I know that because of Cam I am able to be that person I used to think I was. In my heart I feel true compassion for other mothers of children with various medical issues. I empathize with those that have a child that is different, and I understand families of kids with special needs at a whole new level.

So in 9 months I feel like life has really taught me alot about really living. I feel like being a mother to Cameron is my most proud accomplishment. I know that God has great plans for my little boy, and everyday that I look at his beautiful face, I am ashamed of myself for those selfish feelings I had when I was pregnant with him. These past 9 months have been the best and worst of my life, and I am so grateful for every second of every one of them. So here is to the next 9 months....I pray that God brings only health and happiness to our family and that he continues to teach me the great reasons he has put the most amazing little boy into my life. I am so lucky that Cam chose me to be his mommy....HE IS MY MOST FAVORITE THING!!!

Bag of Emotions

Well today I spoke with the insurance company and got everything figured out for Cam's upcoming hand surgery. But as I was talking to the lady on the phone about the procedure, and how long we would be spending in the hospital I caught myself speaking to her like this was the most routine thing. Like taking my kid to have a major surgery was something that was just part of our lives and like it was no big deal.....but then it hit me....this is a big deal. So of course comes the waterfall. But after I cried for a moment, not really understanding why I was so upset, I started thinking I know why I'm upset. I'm upset because surgery is a major part of my life. Since I was 24 weeks pregnant surgery has just been something that is a part of my daily vocabulary...and it sucks!!

When Cameron was born we thought we would be surgery free until that first major head surgery....but to our dismay he would have three pretty major surgeries before he even got to the big head one.....and now that the time is getting closer for his hand surgery I can't help but feel overwhelmed again with everything that my sweet little boy has to go through. Usually I do really well. I try to see the optimistic side to things, and with a precious easy going baby like Cam, he makes it easy for me to be happy most of the time. But then those darn depressing emotions slip up on me and I have to face them for a bit, then move on. I've become really good at playing the part of a mother who deals really well with a child that has pretty intense needs. Sometimes I am even able to convince myself that I'm that person, but then it hits me....like a ton of bricks...on days like today, when I find myself being so nonchalant about my child's upcoming hand surgery. A surgery that will yet again alter his physical appearance, and change my little boy, I know for the better, but it's still change, and a change that has to happen under a knife.

Cameron gets me through these surgeries. He has so far recovered really well from surgery, and that makes it a little easier for me. I know I sound super selfish talking about how it's easier for me, when it's not me going under to have my fingers separated, or my skull worked on, but honestly I feel that we as parents with kids that go through these things are the ones that suffer. We watch our child be taken away by people that are going to cut them open, then we watch them come out of recovery bandaged and crying, unaware of why they are in pain, and then we watch them try to heal, and sometimes it goes well and sometimes it doesn't. But either way, they don't remember. But the parents, we remember it all....and it doesn't get any easier handing them off for the next procedure.

So today, as I spoke with the lady about my child's upcoming hand surgery I had a tiny meltdown, but like all other meltdowns I recover and get on with the next task. But days like today are my least favorite. So it's my prayer that I start having less and less days like today, and I'm sure that with time, and not scheduling a surgery for my child every two months, I'll be able to replace those days!! But the good thing is that if I need a little pick me up all I have to do is watch the most beautiful boy in the world play with his toys and laugh at me, and everything gets better :)

No more Helmet!

Well today we ventured to the lovely city of Winston Salem, a town we have gotten to know very well. This is the place Cameron was born and where we spent the first 8 weeks of being parents. I would be lying if I said that this town doesn't hold a special place in my heart. The hospital where Cameron was born holds alot of memories for us. Some not so good, but others bring tears to my eyes when I think about them. Like the day when we were told that Cameron was having a hard time breathing after his first surgery, and they weren't sure if he were going to live, that memory....not my favorite. But then there are those memories that make me smile. Like when Cameron came off the vent for the first time, or when we met other families that had a baby in the NICU. We made alot of friendships during our stay, and they are friendships that we still have, and cherish. We also had amazing nurses that fell in love with our sweet boy, and to this day when we see them they are his aunts!! It's a complicated relationship that we have with this place, but one that we can't break up with for a very long time. Because of Cameron's extra special issues, we see alot of specialist. And all of them are located at Brenners. The hospital where Cam was born.

Well today that is exactly why we went to Winston. It has been 90 days since Cameron's big head surgery. During the past 90 days Cameron had to wear a helmet in situations where his head could be in danger of being hit. So when he was in the car seat or stroller he was supposed to wear it, or if he were playing with other kids, or in a situation where he may bang his head he was supposed to have his helmet on. This was to ensure that if his newly shaped forehead were hit that the bone wouldn't shatter since it was not calcified. However, because I can't stand to hear Cameron screaming in the car, we didn't practice the helmet rule very often. There aren't many things that he hates, but that helmet was one of them. And because he wasn't required to wear it all the time, there was no way to get him used to it, and so when I did try to put it on him, it was a very traumatic experience for the both of us. Anyway, long story short, we saw Dr. David, Cam's head surgeon today, and she said he looks great! She also said his bone had calcified and unless he were playing softball he wouldn't need a helmet anymore!! Yay....especially since we haven't been good at wearing it in the first place. This makes it easier for me not to feel like such a horrible mother!

Today's visit in Winston was great! We love getting good news. I dread the day that the news isn't good. But I am truly trying not to harbor those negative thoughts, so for today I'm rejoicing in the good news! Cameron has had a wonderful week, he is the funniest little blondie I know! I love my sweet boy, and can't wait to see what new thing he pulls next week!! Thanks for reading!

Warmer Weather

Well it has proven alot harder than I thought keeping up with this blog! I am just not good at remembering things like this. Well not alot has been going on lately. Just nice and calm..which around here is how we like it! We had an appointment last week with Cam's ENT specialist who says that he is looking good. We were concerned about the amount of ear infections he's had, but she looked at his ears and said that although he does have some fluid build up behind one of his ear drums that it could just be lingering from his last infection and so she doesn't want to do anything just yet, she just wants to recheck in 6 weeks, and then if it's still there she said they may consider placing ear tubes, but if not then she just wants to watch and see. Most of the time children with this syndrome have ear tubes placed. They have such small ear canals that it creates a very small area for bacteria to grow and it's alot easier for fluid to accumulate. But if he doesn't need them right now, then that is wonderful!

It's also been getting warmer around here, and most would agree it's about dang time! Living in the mountains definitely has it's advantages, but something I would consider a disadvantage would be the fact that cold weather can tend to linger around alot longer than it's wanted, and this year that has been the case. For instance today is May 1st and it's cloudy and overcast. It's not to chilly, but I want some sun and birds chirping!!! My husband and I were debating over whether or not to plant a few things this weekend, but decided against it because the weather is just so unpredictable this year. So we are just going to wait until closer to the end of the month. We figure by then there should be no way that we could expect it to get too cold again. Yesterday was beautiful. We spent alot of time out on our deck. We had Cam in his swing, and just out on the porch. He loves being outside. He hates the sun and is very sensitive to being outside, but as long as his face isn't in direct sunlight he loves it and enjoys playing outside.

Today, after church, we went to an opening of a mountain bike trail in our county. It's the first ever mountain bike trail here, and my husband is super excited because he enjoys biking and now that this trail has come along he has a keen interest in getting into mountain biking. I enjoy biking as well, so who knows maybe it will become something that we end up doing as a family. Cameron loved being out today because it wasn't too sunny, and I think enjoyed his first hike, as we ventured onto the trails to check it out. He just hung out in the carrier and we hiked out and back and he never made a peep! So maybe that is what he will love to do, which I'm sure if my husband has anything to do with it he will. Paul loves the outdoors, and Cameron seems to be following in those footsteps, which I know thrills my husband!

Well I'm glad that some warmer weather is coming our way. We have alot to prepare for as this time next month we will all head to Boston for the big hand surgery. We are excited to get over this hurdle as well, and look forward to meeting some other families in the Boston area that also have children with Apert Syndrome. It's always nice seeing other kiddos that are as awesome as yours! Hope everyone had a blessed Sunday, and hopefully I'll remember to post more often.

Meeting baby Sarah

This past weekend we were grateful for the opportunity to visit a family that has a little girl with Apert Syndrome. She shares alot of similarities with us. Her mommy also found out prenatally that Sarah would have Apert's. She also delivered Sarah at Wake Forest, where Cameron was born. Unlike Cameron, Sarah only ended up spending about 2 weeks in the hospital, and is now home with her awesome Mommy and daddy.

The first time I spoke with Erica(Sarah's mommy)I was taken back to when I was pregnant with Cam. All the unknowns, and the anxiousness that I felt daily was felt in her voice. But she amazed me because she was very excited about Sarah's arrival. She had taken the smart route and instead of spending every waking moment during her pregnancy researching Apert, she decided that she would just wait until Sarah arrived and just deal with it then. I wish I could have been that dedicated when I was pregnant, it would have probably caused me a little less worry. When you look online you are subjected to the good and the bad, and even though Apert Syndrome isn't typically deemed a life sentence, there are some scary things out there, and when you are exposed to the bad, sometimes it's hard to wrap your mind around the fact that that probably won't be you. So for me it was a daily struggle wondering if Cam would be one of the worst case scenarios. But Erica, she just gave it to God and welcomed Sarah, with what her needs were, and has done that ever since. She is an amazing mommy to that little girl!

We spent several hours eating dinner and just hanging out with this great family. They have two older children who are absolutely wonderful. Sarah was there little unplanned blessing! We talked about what we've been through, and some things they have to look forward to and can expect when having a child with this complex syndrome. We also talked about our backgrounds and had an amazing dinner, something I can't wait to try for myself to fix. Seafood Eutofee....had never even heard of it before but Paul, Sarah's daddy, prepared that for us for dinner and it was AMAZING!

Holding baby Sarah was such a flashback for me to when Cameron was a tiny baby. She is still very little and I look at Cam and it's crazy to see how big he is compared to her, and knowing that not too long ago he was that small. I have a new outlook on babies. I loved holding baby Sarah, knowing that there was another real life baby out there that had what Cameron did. Even though we have met another person with Apert, it was different because the other girl was an adult, and sweet Sarah is baby, something I've been exposed to. So it was great being able to touch and feel that similarity. I loved her! She is beautiful and I'm so glad they live so close, so that we do have that connection to another family going through what we are going through. It's also great to provide advice and support. I definitely have a lot to learn, and Cam still has his hand and feet surgeries to go, but he is 8 months and so what he has already been through I'm able to share with them, and that makes me feel good. To know that Cameron is helping me to help others who are just now taking this journey!


Like I've said before, we are so grateful that this family is opening their lives to us. It's been precious for us to have another family that we can be close to that knows our hearts. They feel the sadness of watching their daughter go through multiple surgeries. They also revel in the joys of all the progress she makes along the way. I look forward to the times that Cameron and Sarah can play together and know that they share something special. We had a wonderful time at our visit and can't wait to do it again!

How has 8 months gone by already?

Yesterday I was playing with Cameron, and I looked at him and he looked at me, and I had a weird flashback to when I was pregnant with him. I kept thinking how it seemed to be taking forever to get Cameron here, and now he is already 8 months old. Where has the time gone? Now don't get me wrong, when he was a tiny baby and still in the hospital time seemed to be on hold. I couldn't wait until the next day because I wanted everything to be good and new again. I hated sitting in the hospital all day long while my baby laid in his little bed all helpless and most of the time recovering from surgery. Now I look at him with awe. Even though he is behind in his development, I constantly remind myself where he has come from.

Not all Apert children have such a rough start. In fact we thought for sure we would be one of those families because with the ultrasounds none of his internal stuff was detected. Which still baffles us. Anyway, because we were prepared we thought that we would have Cameron and that although he may have different needs, we thought that he would for the most part be very healthy. But unfortunately that wasn't the case. When he was born, aside from being 5 weeks early, his breathing needed to be aided by a ventilator. The next few days were a blur, but I remember all the tests coming back normal. Then when they tried to feed him and couldn't pass a feeding tube into his stomach, that is when things turned upside down. That is when they discovered the esophageal atresia, and that is also when they discovered his malrotation. Those two things have been repaired and he's had a shunt and the cranial surgery. Things to come are his hands, and feet, and at some point he needs to have a hernia repaired. And later on down the road, we will have to address his heart, because he has a minor thickening in one of his valves that we monitor, but that will one day need to have surgical repair in order to keep it from thickening too much.

So yesterday, when I was looking at my sweet 8 month old, while my head said where has the time gone, my heart said I want it to go faster so that we can have some of the bad parts over with and maybe have some time to just be a kid! Just being a baby is not something Cam has or ever will be familiar with, but my prayer is that we can get to a place where he can just be a kid!! I want so much for him, and yet struggle with not knowing whether or not he will do certain things. But for now, for this moment I'm going to be happy that I have a beautiful, funny, precious 8 month old, and for that I'm grateful!

Flashback Monday!!

So today is going to be my last flashback, because I'm going to talk about Cam's last surgery...which is the last major thing he has gone through...then only moving forward. Cam's head surgery was scheduled and rescheduled 2 times. The first was scheduled for January 5, 2011. Although I was extremely anxious for this to actually happen I knew that it needed to so that we could put it behind us. Cam was 4.5 months old. However on Christmas last year, Cam decided he wanted to catch pneumonia and so we ended up in the hospital during his first scheduled surgery....so it was postponed to January 26th. However, I wasn't comfortable doing it so close to him having such a rough illness so they ended up rescheduling for the third and final time to February 9, 2011. This day gave me severe anxiety. I had a hard time sleeping, couldn't eat. I just kept imagining horrible things happening to my sweet, sweet baby. Then the day finally came and it was the scariest, hardest day of my life.

Cam's surgery was the first of the day, so we arrived at the hospital at 7am. He wasn't allowed to have anything to eat after midnight the previous day so he was a little hungry. But he didn't cry or get upset at all. He just sat there smiling and cooing until we went back to the pre op room. I was a mess. I had a hard time looking at his sweet face knowing that it was about to change, and not only that but that surgery meant that something bad could happen. I couldn't stomach the thought of anything else bad happening to my baby. I was crying, and Cam was just smiling away. We got him dressed in his little hospital gown and then sent him on his way.

Our surgeon, Dr. David made it possible for me to hand him over. She herself carried him to the o.r and promised that everything was going to be OK. Something I know medical professionals aren't supposed to do. But that was what I needed to hear in order to hand him over, and she knew that. She took him and I sat crying and pleading with God to please bring him back safe and to let everything go well. Paul and I left the pre op room and began the 6 hour wait until we would be reunited with our precious Cam once again.

The actual surgery got started at 10 am. It takes a long time to get iv lines started and to make sure his anesthesia is working well. But they called us at 10 am and said they had began the procedure and that they would call us every hour with an update. At 11 I received the first call that surgery was going well and that Cameron was doing great. He had lost minimal blood and they were moving right along. Then at 12 the same thing. They said he was still looking good and that they would call soon with more updates. Well one o'clock came along and no call. This terrified me. Of course the first thing that popped in my head was something was wrong. But then I received a call at about 1:15 saying surgery was finished and that they were closing up. I sighed a huge sigh of relief and thanked GOD.

Dr. David came out and spoke with us. She explained the surgery had gone as planned and that Cam had done great! She said they were still in the process of extubating him, but that as soon as they had that we could see him. I sat crying in Paul's shoulder knowing that the next time we saw our sweet boy he would look different. I knew that the next few days were going to be hard, and I was anxious to see my Cam.

They called us back about 20 minutes later. The first time I looked at him was terrifying. His head was wrapped in a white turban and his face was red and puffy, and he was completely knocked out. Paul had to sit down, just seeing him like that made him nauseous and he didn't know if he was going to pass out, so he took a seat. We both stayed with him until they moved him to the intensive care unit. That is where he stayed for that night. Then the next day they moved him to the step down unit and the day after that to the regular floor. Cam stayed in the hospital for 6 days. Every day he improved and his swelling really didn't get too horrible. They did sew his eyes shut during the surgery, but they removed those sutures on day 3. Then all he needed to do was eat well enough to go home. So on day 6 he was looking good and they let us go home!

This experience was really hard. My anxiety was through the roof, and my heart ached for my sweet baby that I couldn't explain why he had to be in so much pain. But Cameron....He was a CHAMP. He made it easier on me because he handled it so well. He was the one that got me through this, and Paul of course. Cameron is an amazing little guy, and we are so glad that this part of his life is behind us. We know he faces more surgeries, and we know that his life is always going to be a bit more complex medically, but we know that Cam is a fighter, and that even when we don't feel like we can make it through, he gets us through it!!