Finding JOY

I'm grateful to be writing this post on the other side of heart surgery. A little over 3 months on the other side to be exact. Cameron is doing great! He is back in school, he is running, playing, being his silly, fun self. I can pick him up underneath his arms again, and if he falls or takes a hit to the chest by some random flying toy I don't shriek in horror! Of course he still has to be careful, but he isn't on any precautions anymore and his incision and chest have healed! It's incredible. His resiliency. His bravery. His will.

I'm still traumatized. Not in a way that is noticeable, and sometimes I even forget myself. But in true post traumatic form...this nasty monster comes out of hiding just to remind me of my weakness. I catch myself paralyzed in fear for no reason. I'll be completely fine, having a completely normal, functional, typical day, and then BAM.....just like that I'm struggling to find air. I am panicky and sad. I hide it exceptionally well. I keep it to myself mostly. I find a way to cope and I move on. But for those brief moments I am reminded that I cannot escape this hold that has been placed on me. The fear I push deep down and try to forget about. The fear that reminds me that Cameron is fragile. That life is fragile. That I'm fragile.

I think this is par for the course. A course that seemingly has no end in sight, because my sweet boy has so many surgeries ahead of him. That's okay. We will be okay. I have struggled this last year to find Joy and it has been a choice I have had to make on a daily basis, but I choose to make it. To see JOY. To have JOY. I know how blessed I am and how beautiful this life is, and even though some things have seemed really difficult and sad over the past year, I have realized that even in the midst of all that, life has been good to me. I may not have seen it at the time. I may not have even been open to seeing it. But life has been good. I have my beautiful family. I have a job that I'm thankful for everyday, and I have friends that make me laugh until I pee(those are the best kind, ya'll) So it's good.

Cameron is good! We are battling the wonderful array of spring allergies, but for the most part he is doing well. Max is great too. They are both learning and growing so much that I really have to beg time to slow down sometimes because it just seems like I'm missing it....but I think that can be said for all of parenting! Cameron's speech is developing so wonderfully, and he really has taken off in his vocabulary. He loves to keep up with Max, who talks NONSTOP, so I really think that has helped so much!!

For all of you that continue to pray for our family and for Cam...THANK YOU! It means so much to us, and we are truly grateful! I told myself I would update this more than every other month...but I'm not doing a great job on following through with that! Something I will have to work harder to do!

Again, thanks for all your love and support! We appreciate you taking the time to read our updates!

Love,
P, J, C, and M

CATCH UP!

It's been awhile. I'm really slack at keeping up with this. I need to do better! Well since the last post, Cam has gained ten beautiful new fingers that he uses wonderfully. We have celebrated Thanksgiving, Christmas, New Years, Valentines Day, and most recently St. Patty's Day! Quite a few things have come and gone. All of them have been wonderful, and I am so grateful for our little family of four. There haven't really been any issues with Cameron other than his last months bought with RSV...again :( This time it was given to him generously  by his baby brother.

The RSV wasn't too bad, but during the illness he developed a new complication called SVT. It stands for Sub-Ventricular Tachycardia....sounds fancy, right?! It causes ones heart to beat really fast, and sometimes medical intervention is needed to put the heart back into a normal rhythm. Cameron ended up needing to be put on a medicine to control these episodes, and since then he has been doing just fine. We head to the Cardiologist this week to make sure everything still looks good and to maybe see about weaning him off of this new med. The most likely scenario was the his RSV caused his heart to break into this abnormal rhythm and it is very possible that once the RSV subsided that the SVT did too, so we will just talk with them this week to see what we will do from here! Thankfully it's very treatable and not something that is very invasive or really even that dangerous.

Right now Cameron seems to be doing really well. He is walking/running, he loves to play at the park, he understands everything we say, and is working really hard with his speech therapist to talk back to us! He is still only eating mostly purees, but we are making a lot of progress in that area as well. He is sleeping in a big boy bed, and has really come along in his development. He weighs about 26 lbs, but is in the 85th percentile for height for his age, so his slender build is to be expected! I am so proud of everything he does and attempts to do! He loves music, and can keep a beat to several songs! Right now we have him in a creative movements class once a week and he is really enjoying that! He is always smiling, and unless his baby brother is pulling him or taking his toys, he has really proven to be the most patient big brother to Max! They get along so well, and I am just so grateful that they get to grow up together and be best friends!

MAX- Max is....well how should I put this.... FEISTY!! He is nothing like Cameron. Cameron was so laid back and calm. He was the sweetest, most gentle soul, and still is! Max is the complete opposite. He is LOUD, persistent, and not very patient. But he is so very loving! He smiles all the time, has the funniest expressions, laughs at my silly songs, and demands to be paid attention to...ALL THE TIME :) I can already tell he is going to be my little trouble maker....but that's okay because I'll have my sweet Cam to balance them out!! At almost 7 months he is weighing a whopping 20 lbs and is around 30 inches long. He has been sitting unassisted since about 4.5 months, and is on the verge of crawling! He has brought a lot of fun to our family and I am so grateful for him!

I guess that is about it for now. I will try to be better at updating this more often, especially since this has been the one place that I feel I can share openly about my feelings/thoughts living life with my most precious Cam....But truthfully it's become quite normal. I didn't ever think I would get to a point where I could say that...especially during Cam's first year, but I've learned so much about just enjoying and being grateful for the present. Sometimes things are still really hard, but the good times are so much more now, and it's a wonderful life....really it is!

Heading to Boston

It's that time again. Time to pack up and head up North to complete the rest of Cam's finger seperation. I am so NOT ready. But honestly, when it comes to surgery, I am never going to be ready. After Cam's last finger seperation, and having so much trouble after anesthesia, and having to spend an extra two days in the hospital when we should have only spent one, really has me anxious. I know he has to have it, but sometimes in my head I contemplate if he really  needs ten fingers....I mean he has three functioning ones, and as long as I don't have to send him to surgery I'm ok with that. But realistically I know this isn't even an option. He needs ten fingers, and unfortunatley they haven't come up with any other way to achieve that except with surgery. So in four short days I will send my sweet boy into the OR yet again to have yet another operation.

Sometimes I wonder about God's decision. I wonder how a precense so loving and pure could cause so much pain for such a wonderful child. But then I remember that Cameron wouldn't be Cameron without his journey. He wouldn't have 12 beautiful scars that I have memorized on his precious little body. He wouldn't be the amazing warrior that I am so in love with. Cameron was made for surgery. It's the hardest thing for me to come to terms with, but it is what it is. God made Cameron the exact way he wanted him to be. He put together his body to withstand all of his multiple journeys to the operating room. He gave him a head that wasn't perfectly put together, fingers and toes that need seperation, a stomach that didn't work quite right, ears too small, a nose too small, and a heart that needed a little tweaking. But he made Cameron in his perfect image. Even though I shudder when it's time for him to go to surgery, I know that God chose us to be a part of Camerons walk for a reason. Sometimes I'm not so sure what that reason is, but I know one day, I will know, and most of the time that comforts me. I would be lying if I said that I don't get on a pitty party tangent every now and again, because I DO! I feel sorry for myself, for Cameron, for Paul, and for Max. I feel sorry that I don't have a child that is the picture of health. I feel sorry that instead of going on fun family vacations I get to plan trips for surgeries. I sometimes cry because I'm jelous of the fact that others have multiple healthy children, and complain about silly things, when they have never experianced anything close to what our family goes through almost constantly. I still get angry occasionally that surgery is a continual part of my life. I go through those stages sometimes, but I will say that at the end of the day I couldn't be more grateful and blessed to be the mother of the bravest child I know. He is so amazing and wonderful and I truly have the most to be thankful for!

So onto Boston. We leave Sunday and our intended flight back is Thursday. Please pray for safe travels, especially with this tropical storm brewing. Also please pray that we manage with two kiddos this time! And please pray especially for Cameron. For his continued strength, and for this surgery to go smoothly and for the Dr's and nurses and all of the staff to be able to complete this finger seperation with no problems. I am excited for this part of the journey to almost be over. Excited that my sweet little boy is about to have ten fingers....FINALLY!!!! Thanks for loving us and praying for us. I will update once everything is all said and done!

Time for an UPDATE!

Wow, whoever the "they" are that claims time flies, wasn't joking. I feel like there is no possible way that so much time has gone by since the last time I updated. The last post was how we managed to get Cam his three fingers, it took us awhile, and several cancelled surgeries, but he finally had his first finger separation surgery back in May, and in June we saw the end result of this journey with getting him some fingers...well separated fingers! Since then his hands have been serving him well. He was cautious at first, he didn't want to use his fingers separately and had no intentions on acting as if they were separated. The only big thing at first was that he didn't want to walk for fear of falling, and he was very careful not to hit his hands on anything. I will say that I am so impressed with his surgeon and the team in Boston. Cam's fingers look amazing, and the best part was that after the casts came off, besides having to put splints on his hands at night, there were no dressing changes, which I hear is very common with alot of other kiddos when they have their surgery. Not that it's a bad thing to have to have dressing changes, I'm just grateful that I didn't have to do that with Cam, because it looks painful and with a toddler I'm not sure that it's the most feasible. The splints lasted about 6 weeks, and then we were done. Now Cameron will use his fingers or at least his pointer with some activities, and is doing very well with his OT on the skills she works with him on. I'm always so humbled by his strength and courage. He doesn't know how amazing he is. None of the kiddos that face things like this realize the impact they make on others. Their ability to handle such hard circumstances is awe inspiring. Cameron is awe inspiring. He is so wonderful and brave. And now he is a crazy, funny, independent two year old!!!

Cameron turned two on August 15th. He celebrated with his friends and family at his very cool Elmo party. He even dressed up as Elmo. He was showered with lots of gifts and toys to last him until his next birthday.  One of his very best friends, Stella, gave him an Elmo drum set, and because her mom is so creative they gave Cameron a fish. Dorthy in a tank to be exact, since Elmo has a fish, Cameron needed one too.....I couldn't have thanked Stella's mommy enough...(Ashley if you read this, that is sarcasm :) ). We still have Dorthy...somehow she is still alive and kicking...or swimming. Paul's parents even came in from Florida to be here to celebrate Cam's big day. It was alot of fun, and we felt very blessed to have so many people that love Cam come together to celebrate our sweet boy's big day.

Also in big news, we added the newest member of our family on August 23rd. That's right, Max Mclaurin Elliott came into the world weighing a whopping 7 lbs 12 oz and measuring 20.5 inches long. He was a big boy for being 3 weeks early. I had a scheduled c-section because of me being diagnosed with pre-eclampisa around 32 weeks. I was able to manage it fairly well, but around 37 weeks it can start getting worse more quickly so they decided it would be safest to do the c-section at 37 weeks. So that morning as I prayed for God to protect us, I was wheeled into the operating room and about 20 minutes later Max was here. He was doing great at first. He was given agar's of 9 and 10, but when they took him to the nursery to weigh him and clean him up he started having some trouble breathing. They put him under an oxygen hood, but later realized that he had something called RDS. It stands for respiratory distress syndrome. Something not too uncommon for c-section babies and babies born a little early. So Max had to be transferred to a hospital we were all to familiar with in Winston Salem called Brenners. This is the place that Cam was born and where we spent most of his first year. Not a place we were to excited about returning too. But Max needed something more than what our small town hospital could provide, so off we went. Max did very well there and after 6 days he was ready to come home. We left the hospital on August 31st. Paul's birthday and the day after Max had turned 1 week. It was a very good day all around. I was so excited to get home to see Cam who had been with my in-laws for the past four days, the longest I had ever been without him, and It was a happy reunion...for me at least. He seemed happy as could be playing with his YaYa and Grandaddy. Cameron meeting Max was a sweet sight, even though he wasn't too fond at first. He has slowly started to come around, and will even give Max a kiss now. I love looking at my two boys. My family is complete, and I feel so blessed to have Cameron and Max in my life. Just me and my three boys!

So what's coming up? Well at the end of October we will be heading back up to Boston to give Cam the rest of his fingers. October 30th Cam will go back for surgery again in what will hopefully be an uneventful but successful surgery to complete his finger separation. I would like to think that by now this would be routine. But it's not. It's surgery. It's traveling for surgery. It's keeping Cameron well so we don't have to cancel. It's travelling with two kids this time instead of just Cam. It's knowing that he will be in pain, and having my heart break when I have to hand him over to the surgeons. It's unfair. It's just unfair. But I know that God is in this. He is with us and will be with us even when I'm yelling at him because I'm scared and afraid. I know that God loves us, and as much as I'd like to blame God sometimes for the scary times in my life I've come to realize that those scary times have molded me. They have made me who I am now, and who I am grateful to be. Not that I was a bad person before, but the gift of Cameron is truly something that I am blessed to have and that I needed. What Paul and I both needed. I often think I could quite possibly be the most unlucky person in the world, because of the events that sometimes occur in my life. But then I am reminded that there is no way I can consider myself unlucky when I look around. Cameron and Max are two of the most amazing blessings. I just need to be reminded of that sometimes. This surgery does scare me. Surgery always scares me. I would do it for Cam a thousand times before having him go through this, but I can't. So I sit by his bed, I hold him, and I pray for him while he goes through it, and while he triumphs. But we do appreciate everyone prayers as we enter into this next month. Prayers for health, and positivity, and safety.

I promise I will try to do better on my updates. This two kid thing is going to take some getting used to but I'm sure things will be great and I will be able to make Cam's blog more of a priority for those of you that keep up with us this way. Thanks so much for reading and loving us. We are more appreciative than you will ever know.

We have 3 fingers and a thumb!

So May 14th, Cam became the new recipient of separated fingers. After a long 5.5 hours in the operating room, a mishap with the type of intubation they used, 14 hours in the ICU because he needed to remain intubated, and two hard, bright blue, Elmo casts later, we had one cranky Cam, but underneath those casts there were fingers. The surgeon said everything on the surgery end went wonderful. His finger separation went smooth, and they were able to give him a great outcome. Overall we spent 4 days in the hospital for this surgery, and then flew back home. I won't say that Cam was his sweet, silly self once we were home, but he quickly progressed back to his norm, and life with two large, hard, casts became easy.

Of course things don't always stay smooth sailing, because then that just wouldn't be our life......so the week before Cam was to head back to Boston for the cast removal he became ill. We thought he may have had a shunt malfunction, so we traveled to Winston to find out that it was just a stomach virus, and that it would resolve on its own. Over the next few days, his stomach virus seemed to disappear but he still had a poor appetite and didn't really want to eat, and for me that is the worst thing. I already feel that Cam is small, and even though he is healthy, when he eats it makes me feel better, but when he gets in those modes where he refuses food, or throws it up, I get anxious. So Friday I scheduled a swallow study for him, to make sure that he didn't have any issues with his esophagus. He fought tooth and nail through the study, and so how accurate it was is still up in the air, but what they did see was completley fine, and as of now his esophagus is still functioning fine. I worry about all of that because of his esophageal atresia repair he had when he was just a newborn, because unfortunately one of the things that can happen is that a stricture develops in the esophagus and it needs to be dilated. Not a huge deal, but still something I wasn't wanting to deal with, especially right before his scheduled cast removal. So luckily for now, no problems with the esophagus. Just one picky little boy. And to top all of this off, Saturday morning he woke up with a very runny nose, and a cough.

So Sunday finally gets here, and Cam and I prepare for this plane flight alone. He still has a yucky upper respiratory virus, but isn't too cranky.This was the first time I had flown alone with Cameron, and something in my mind told me that it would be just fine. I had this expectation that everything would go smooth, and that I would conquer this trip with no issues......BOY WAS I WRONG!!!!! We made it to the airport Sunday, Paul said his goodbyes, then Cam and I headed to check in. We made it through a very crowded security and to our gate just in time to board the plane. I decided that two carry on's would be easy to handle on my own, but that plus pushing Cam's stroller, plus having to hold him and fold the stroller at the base of the plane, started this flight off in an already frustrating mode. We got on the plane and sat in our window seat, squished between a large gentleman that sat in the middle and an older lady on the aisle seat that continuously asked me if Cam had whooping cough when he would cough. She was worried because she said her immune system was very weak, and his cough sounded very much like whooping cough to her. I assured her that he just had a cold and that there would be no way I would bring my toddler on a plane with whooping cough(some people really make me want to be violent, and I am not a violent person).

After sitting for about 10 minutes the plane begins to depart. We move about 20 feet and then the plane proceeds to pull back into the concourse. The pilot then comes over the speakers to say that there was a ton of air traffic over Washington DC and that we wouldn't be able to take off for an estimated 1 hr. 40 minutes. At this point Cam is already frustrated, we are super cramped, I have no room, my giant 7 month pregnant belly makes it difficult to maneuver, and I'm sweating something horrible. I almost started crying then, but held it together. I knew that I couldn't loose it yet. So luckily the plane only sat for an hour before deciding to leave again, and once we were in the air, Cam thankfully fell asleep. It was a very loud sleep, because his congestion didn't make an already tight upper airway and better, and so he did some serious snoring, but at least he wasn't crying!! He woke up about 30 minutes before we were landing in a horrible mood. He was hungry, so I somehow pulled a bottle together for him. He drank it down, and in about 10 minutes threw it all back up.....all. over. me. I was mortified. I had no way to help him, to help myself, to clean anything.....it was horrible. It was over with that....I let the tears fall. The man next to me asked if he could do anything, but he couldn't, and I was so frustrated that I wouldn't have accepted it anyway. Luckily we only had about 15 minutes left in the plane, so once we landed and got off, I put Cam in the stroller, ran to the restroom, semi cleaned myself up, and headed toward the gate to be picked up by some friends that we were staying with in Boston.

The rest of the trip was fine. Monday morning Cam got his casts off, we got fitted for his splints, and headed back to our friends to stay the night before our departure from Boston the next morning. Cam's new fingers looked really great, and I was excited that this first step to 10 fingers was finally over!!!!!! We had a wonderful flight home on Tuesday. The seat next to us on the plane stayed open, so we had alot more room, and Cam was much happier during this trip. It was not 100% comfortable for me, because being pregnant on a plane isn't the most fun ever, but with Cam being happy and no throw up, I will say it was 10,000 times better than the plane ride there.

We have been home three days, and Cam uses his fingers marvelously well. Almost like he's had three seperate fingers forever. We did take him to the peds this week, and he does have a sinus infection, but he seems to be handling it well, and hopefully his congestion will clear up here soon. They called from Boston this week to let us know that his next seperation surgery will be October 30th. So we will have an even older toddler and a newborn on the next trip......Are we crazy or what? :) Thanks for all the prayers and well wishes during Cam's surgery. We truley appreciate everyone that loves our sweet little boy, and are grateful for the support we recieve during these hectic times.

It's getting close

Well it's almost time to head to Boston. Next Wednesday night we will pack up and head to Charlotte, where we will stay the night so that we can catch our 7:30 am flight up north! Then Friday we will spend the day doing all the fun pre-op appointments that precede surgery that will take place on Monday the 14th. I have alot of emotions streaming right now. Honestly, I'm grateful that this surgery is going to be behind us in less than two weeks, but at the same time I'm so anxious about handing my sweet boy over for yet another surgery. He has no idea that this is coming, and when he comes out of anesthesia, he will be so angry about not having access to his hands, and even though he will forgive me later on, in that very moment he will be mad at me, because I'm his mommy. I'm the one that is supposed to make his boo boo's all better, the one who is supposed to fix whatever isn't right. But for 3-4 weeks, he will be forced to wear these huge casts and he will have no idea why, and so he will only by default blame me. It's ok though. If I could go through this surgery for him....I would do it in a heartbeat, but since I can't, if the only thing I can do is be the one he blames, then I'll take it. I just wish there was a way to explain to toddlers that it will only be for a little while and that they knew what that meant.

I know that God takes special care of kiddos like Cam. He gives them a little something extra that makes them super strong and brave. I know that he also gives us mommies a little something extra too, because in my wildest dreams I wouldn't be strong enough to handle this. I wouldn't be able to hand my child over for surgery after surgery. I wouldn't be able to cope with the sadness that his journey sometimes brings. But sitting here 20 months and 8 surgeries later, I can tell you that it definitely isn't me. So I have no other explanation other than God. Although at times I get angry with him, and at times I question his plan, I know he is there, and that he is with Cameron, protecting him, and protecting my heart. It's always a battle with me when it's surgery time, on whether or not I'm going to decide that God isn't as loving as I once thought....because I become angry that our family has to go through this, that Cameron has to endure so much. But then we get to the surgery day, they take him away, I pray for hours until he returns, and then I get on my knees and I praise Jesus for getting my child through yet another procedure. I tell him that I love him and that I'm grateful for life, for Cam, for everything. I tell him I'm sorry I ever doubted his faithfulness. So now I pray a little differently. I pray that God will help me have strength to know that he is with Cam. To have faith that he is going to bring us through this, and know that he is our provider. I throw in a couple of prayers to make Cam strong and brave, and to bring him through the surgery safe and happy. But I know that it's important to not doubt so much, but to believe. Believe that God is with us always, and that Cameron's life is his, and he is going to prosper and love him, just as Paul and I do. So not only has Cameron taught me about the most important things in life, he has taught me that I wasn't as connected with God as I needed to be, and through this experience I am now growing. A long way to go, but on the way for sure!

Time for an update!

So it's been awhile since I have updated this blog. I guess the time has just gotten away from me. Since my last post when Cam's shunt malfunctioned, we have had alot of new things happening. For starters, Cam got diagnosed with RSV about two weeks after he had surgery for his shunt. That put us in the hospital for three days(not so fun)but thankfully he started getting better pretty quickly and it didn't get too bad. We had a few good weeks, and then one day Cam started crying uncontrollably, something he never does, and so we took him to the Dr. and sure enough his ear drum had ruptured and he had a really bad ear infection. However, besides the thirty minutes of crying he handled his ear infection like a pro. He didn't skip a beat, instead he just smiled on through it and was happy as a clam. We even made a trip to Fayettville for Paul's grandma Mavis's 85th birthday because he was acting completely fine. Then the week after that, when he seemed to be all better we decided to go to Florida to visit Paul's family for Easter. We left the Thursday before Easter, and drove, getting us to the sunshine state around 2 am. It was an uneventful drive on Cameron's part, but I was miserable. Earlier that morning I had been to the Dr's myself only to discover that I too had an ear infection and a sinus infection. So the drive for me was really long. Thankfully the rest of the trip went well and I started feeling better pretty quickly.

Florida was alot of fun. Cam had never been, and it was nice to finally get the chance to take him without surgery keeping us from traveling. We took Cam to the ocean while we were there. He didn't mind sitting in the sand watching the water, but the minute the tide came in and the water splashed him, he was done....he screamed and cried until we took him far away from the ocean and put him in his little beach chair. It was really sad watching him look so scared. Maybe next beach trip will bring a better outcome! Other than the beach experience, he seemed to love Florida. He was surrounded by people oohhing and ahhing over him, and spoiled rotten by his YaYa and Grandaddy.

Since my last post we also announced the exciting news to our friends and family that we are expecting another baby!! Another boy in fact. We found out in December, but didn't tell many people until I was 12 weeks, and we didn't mass announce it until a few weeks ago. I have had alot of mixed feelings so far during this pregnancy. At first I was over the moon excited because I felt so blessed to have another baby inside of me. Then I was struck with fear. Fear of everything I had told myself I wouldn't be afraid of because I knew I could handle anything. Unfortunately that isn't how the mind works. And when I really processed that I was pregnant, I became overwhelmed with the fear that something would go wrong or that the baby wouldn't be healthy, or that the baby would have Apert syndrome.

I know that sounds horrible. I mean how horrible would it be if the baby did have Apert syndrome? The best thing that has ever happened to me, has Apert Syndrome so why would I be so worried that I would have another baby with the same thing? It's embarassing for me to admit, but it's how I felt. I love Cam with everything I am and I wouldn't change him for anything in the world, and I don't feel sorry that I have a child with special needs. I do however hate what Apert Syndrome means for Cam. Because for the rest of my childs life he will be faced with surgeries, with adversity, and with challenges that can make an already cruel world even crueler. So that is why having another child with Apert Syndrome is so terrifying. No parent wants for their child to go through pain and suffering, and unfortunately that comes along with Cam's journey, and even though I have accepted his future I hate the things he has to go through, and to think that another child would have to go through that is scary for me. So in the beginning I had alot of fear and anxiety.

I didn't want to go through the real invasive testing, but I knew that my anxiety couldn't be controlled with just the typical pre natal care that women usually receive when there isn't a suspected problem. I was told by many Dr's and genetic Dr's that our chances of having another baby with Apert Syndrome was pretty much zero, but when you have been through certain experiences your mind has a hard time getting around that, and for me it was going to take more than just the 18 week ultrasound. So at 11 weeks I went to a high risk Dr. who did a nuchal translucency screening, testing for chromosomal abnormalities and they did an ultrasound. Then I had an ultrasound at 14 weeks with my regular Ob, and then at 17 weeks I had the follow up ultrasound with the high risk Ob. All tests and all ultrasounds went great and we found out that Cam will have a little brother come September! We have decided to name him Max, and we couldn't be more excited about this new life that is on it's way.

As for Cam, he is doing great! He has had a hard time getting rid of his ear infection so we have been on antibiotics for a while now, but his spirit is still the same old happy Cam. He has learned so many new things, and impresses me everyday with something new that he can do. He loves Elmo, and could watch Elmo's version of I'm sexy and I know it, called I'm Elmo and I know it everyday. He isn't walking on his own just yet, but is standing and oh so close to taking off without mommy or daddy's hand! He has a smile that could make the darkest day turn bright, and he truly is the biggest blessing in the world. Unfortunately, our strand of surgeries is far from over and come May 14th Cam will go for his 9th operation. He will be getting his first finger separation surgery. I am ready for this to be over with, but at the same time surgery is scary, and I hate handing him over. I thought it would get easier the more often I had to do it, but it's always the same. Handing him over tears my heart into and until he is back in my arms I ache for him, and constantly worry while he is away. It's a horrible feeling handing him over, and the thought of it makes my palms sweat, but it has to be done, and those fingers aren't going to separate themselves:) So come May we will head back to Boston where Dr. Joseph Upton will give Cam some fingers, so please say a prayer for my sweet boy to stay well until then, and for a successful, non-eventful surgery.

I'm sure I will update again before we head off for this surgery, mostly so that I can remind everyone to pray for my little angel! I don't necessarily believe that the more people praying means the more God will listen, but I figure it sure as heck can't hurt!!! I think that is all of the updates we have going on for right now. I'm grateful for all of you that read this blog and that love my little boy. It makes a mamas heart thankful to know there are people out there lifting up her most prized possession in prayer and in thought! So thank you for listening and for praying.

Frustration, frustration, oh and grateful.

Cameron has a funny way of telling us what he wants or doesn't want. In fact this past weekend his shunt malfunctioned. Something his Dr's told us wasn't likely to happen for awhile because of the type of shunt he has. But if it's going to happen and be unlikely, then Cameron is the kid it will happen with! So anyway, Thursday I became concerned that his soft spot(which is still open because of the way his bones grow)was a little too full and bulgy to be normal. Sometimes in kids with shunts, their soft spots can become hard and full if they are constipated, or really upset, but when they are still and upright the soft spot should be nice and smooth. His hadn't been for a few days, but I had thought he was constipated, but on Thursday when he had had plenty bowl movements and it was still hard I began to worry. I called our regular pediatrician who agreed to see us Friday morning. I took Cam in and the Dr. was going to press on his shunt valve, and when he does this it should push in and fill up, if it's working properly. He couldn't even get Cam's to push in. So we were told to head to Winston! I called Paul and he came home and we loaded our car with a few suitcases because we were sure we would be there for a while. We got to Winston around 1 pm, and went to the ER. They quickly with a CT scan discovered that Cam's shunt had pulled apart at a point in this neck where the tubing runs. This requires surgery to fix. So Cam was put on the books for Saturday morning surgery.

As a side note let me just mention how difficult this stay in Winston was. We felt like there were nothing but idiots working the day we went in. I'm sure that we were stressed and worried, but the lack of common sense that we felt was going on around us was increasingly upsetting. Maybe it's because we were spoiled back in November for Cams heart surgery in Boston, but some of the things were just unacceptable. OK that is my rant on the anger from the hospital.

Saturday morning came early and at 9 am we were down in the surgery holding room waiting for them to take my baby away for the 8th time. This doesn't get easier, no matter how small or big the surgery, I cry every time. I should be a pro at this, but something about them walking away with him knowing they are about to do brain surgery terrifies me! At about 10 am they took him back and Paul and I went to the waiting room.......to wait. About 45 minutes later the neurosurgeon comes out and tells us they are having a hard time intubating Cam. I told him they had the same difficult time in Boston and needed ENT to come intubate him with a special scope. The neurosurgeon said ENT had been called and were on there way, but that they were going to cancel the shunt revision until they could figure out what was going on with the intubation. This was very frustrating for us to hear, but we were also glad that they were working on getting the problem resolved. About an hour later the ENT finally comes and tells us they were easily able to intubate him and that nothing was wrong and that they were going to call and see if neurosurgery would come back and go ahead with the surgery since he was under. At this point Paul and I were both very frustrated with the events that had gone down, but told them to yes, please proceed with the surgery if he was already under.

They came back shortly and told us that they were able to proceed, and that someone would come and talk to us when the surgery was over. And about 45 minutes after that neurosurgery called on the waiting room phone and told us that all had gone as planned and that they had fixed his shunt and that we could see him in about 30 minutes. We were so relieved and grateful that his surgery was over and successful. But at the same time we were so frustrated and the events that had occurred to get to that point. It was a mix of emotions that I could care less to have to experience again. And as they said it would, 30 minutes later we were with our sweet Cam in the PACU, waiting to go back up to a regular room and begin the recovery process.

So, because of our eventful weekend, and the fact that Cam had anesthesia, we now have to postpone his hand surgery......YET AGAIN. I cannot put into words how I feel. I'm so sick thinking about how much effort I have put into not letting him get sick and keeping him well for this hand surgery to happen....and then this. Something I couldn't prevent, something that had to be fixed with surgery. This is why I started out by saying Cam has a funny way of telling us what he wants, because I'm pretty sure this is his way of telling us that he likes his fingers just the way they are, and he doesn't want surgery to fix them! I on the other hand was so excited about this surgery. So excited to start this process and hopefully have it over before the end of summer. But now it's looking like it may be April or May before we can get back on the books. Literally I am sick with frustration. I am overwhelmed, and I am so, so tired. But I am grateful. I'm grateful that I was able to catch his shunt malfunction before it affected his brain. I'm grateful that he was able to get it fixed and that he is doing ok. I'm grateful that even though we have to put of this hand surgery, one day Cam will have fingers, and we will be able to go to Boston to get them!

So for now we just wait. We wait for Boston to call and tell us when we will be able to come back up, and then we start preparing all over again! Cam is one funny baby I tell ya! Heck maybe now he will be walking all around before the hand surgery. That would be something to be excited about!! BTW...We got home yesterday afternoon from the hospital, and even though Cameron is super cranky and sore, he loves being home, and we love being home with him. His poor little hair was shaved where his incision site was made, so I for see his first hair cut in the near future! I really am grateful for my sweet Cam, and for being able to be the one that goes through all of these things with him. However, it doesn't take the frustrations and anger away that my child is the one that has to go through it. I still struggle when these things happen. I'm not sure if that will ever go away. I hope it does. I hope at some point in this journey I am able to look at these situations and not have that feeling of anger and sadness. But that I can just look at it as our life and what we do. Maybe one day. Maybe not. But for now we are home, Cam is good, and Boston is postponed. Say a prayer that it's able to be quickly rescheduled and that we don't have to wait too, too long for some tiny little fingers!

It's been awhile...and alot has happened!!!

So since my last post....We have been through a major surgery, celebrated two holidays, I had a birthday, and We rang in the New Year...ALOT! Now that it's 2012 and we are supposed to make resolutions...one of mine was to keep up with my blog a little better. I mean I really do love this blog. It's kind of like my journal, only public, but non-the-less it's my outreach to vent my feelings and to keep everyone updated on the various happenings of sweet Cam.

So first off...THE BIG HEART SURGERY:
We arrived in Boston on Tuesday the night before all of his pre-op, we got checked into the place we were staying and played with cam until it was time for bed. Then we got up super super early to head to the hospital to start all of the pre-op stuff. It started off with blood work, some x-rays, then a sedated echo. For all of those things Cam was so good. He behaved like a champ, and was super sweet with all the nurses. Then after his echo, we were supposed to meet with his Surgeon and the Cardiologist for the first time. It was very intimidating meeting the Cardiac Surgeon...the person that was going to be stopping my child's heart to then repair it, to then start his heart back up again...it seemed unreal to me that there was an actual person that could do this. But sure enough he was there....Dr. Frank Pigula, one of Boston Children's most expertise surgeons. He was so kind. He talked to me very calmly and told me that he was going to take great care of my Cam. He told me that everything would be great...I was in tears during this entire conversation of course, but his tone and his assurance helped ease my mind. Then we waited around another few hours to finally meet the Cardiologist...another saint...Dr. Peter Lang. This man is so funny. He was cracking me up, while at the same time explaining to me what Cam's heart looked like and what will happen once he has the surgery. He was great. I felt so confident in this amazing team. Then after an all day long run of appointments we were finally able to leave with a return time to the hospital for 6 am the next morning.

Surgery Day....was really, really hard. I watched them sedate my precious child, and then I watched them wheel him away in his bed....It was so hard for me to let him go, they had to force me to place him on the bed, and even then it was more like them taking him out of my arms...I just couldn't let go. As we watched him go down the hallway, all I could think was that this could be the last time that I could see my baby alive. They are going to stop his heart and what if they can't start it back? NO mother should ever have to experience that feeling...but so many do. I met tons of moms just like me, waiting in the Cardiac waiting area for their child to come back alive. IT's not Fair. It's torture, and it's pain, and it's the most amazing thing all at the same time. Because it's you loving someone so much that when you even think about the thought of them not being there, you don't want to live yourself. That is beautiful to me.

Cam went into surgery at 7:30 am and Dr. Pigula was out talking to us by 1pm. We got to see him for the first time after surgery around 2. IT was horrible. He was laying there, intubated, white, knocked out! But he also looked really good for just having open heart surgery. He had two tubes coming out of his chest draining the blood from his chest cavity, and he had a catheter to drain his urine, and he had a ton of wires everywhere that were hooked to about 5 different monitors. Very overwhelming. The nurses and Dr's assured us that everything had gone great and expected him to make a great recovery. And that is just what he did. By day 6 post op, we were being discharged from the hospital!! Cam did wonderfully well, and his heart looked great! We had a follow up with the Cardiologist in Boston on Friday, and then headed home that night. It was the greatest feeling to be going home with our sweet boy knowing that this terrifying surgery was behind us.

We made it home the Sunday before Thanksgiving. So we got to spend Thanksgiving with family and then we decorated for Christmas! Christmas came and we celebrated at our home this year with all of our family, and it was wonderful. Cam's recovery was very fast, and now you can't even tell he had a major heart surgery unless you saw his scar that runs down the center of his chest. When we get ready for bath time he always rubs his hand up and down on the scar, and I make sure to tell him how brave he was to get that cool scar, and how proud I am of him! I'm sure he has no clue what I am talking about, but one of these days he will!!

Now that it's 2012, I look forward to a great year filled with love and laughter and being grateful for the amazing blessings that the Lord has given my family. Cameron is so wonderful and God, he knew what he was doing putting that little boy in my life. And although God and I have had our issues, and I've been really, really, angry with him, I know that at the end of the day, he doesn't love me any less! My iniquities are big, but God's mercy and grace are so much bigger, and this year I feel my heart and my soul yearning to grow closer to the one that loves me no matter what! I know that I will face more triumphs, but I pray that I can handle them just as I've handled the ones before. Love and Life....My new motto....oh and Happy 2012 everyone!!

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!