Hand surgery is SET!!

Well after much anticipation about that dreaded hand surgery date, we have finally been given a date of JUNE 6th!! Although we would have liked his first hand surgery to take place in May, we are also at the mercy of the Dr's schedule and just the fact that we finally have a date is a blessing. The surgery will take place in Boston. When I was pregnant with Cam and we were researching Dr's that we would want to be in charge of Cam's care, we heard about a Dr. in Boston named Joseph Upton. Another family whose little boy has Apert recommended him, and had used him years ago when their son needed the surgery.

So we did some research and decided that we would definitely like to meet this so called miracle hand man. After Cam was born, we called their office and set up a consultation for December. So on December 14th we flew up to Boston and met Dr. Upton. He was fantastic, in all honesty not a real conversationalist, but definitely knew his stuff, and was amazing with Cameron. He said that he would be able to give Cam 5 fingers on each hand, and that they would look great. He said that he has all of his joints in the fingers so that he will probably have full range of motion when his hands finally heal.

This was great news to us, but not for our wallets. Even though we have insurance for Cameron, we are still going to have alot of expenses with this trip, but we are dedicated to giving Cameron the best, and this Dr. is just that. I hate that money has to be a concern for these things. I wish that some famous basketball or sports star would just bump into me one day at the grocery store, and donate a ton of money towards Cameron's medical bills.....no harm in wishful thinking right? So if any of you readers out there are famous millionaires then we would like to invite you to dinner!!!! heheh... On a more serious note, we are just grateful that Dr. Upton is going to be able to do Cameron's surgery and that we now have a definite date, so Boston, HERE WE COME!!

Flashback Monday!

Here it is 9 pm and I'm just now getting to this....I was hoping I would be better at blogging, but I guess I'm going to have to put more effort out :) Today, we had an appointment with Cam's CDSA(child developmental agency)worker. She came out to evaluate his progress, something she does every month. She was asking me all of these questions about what he is and isn't doing right now, and as I'm telling her about the things he is doing, I started thinking about the first time she came, which was right before we left for Cam's shunt surgery.

After we left the hospital the second time, we were home for about 8 days before we headed back to Winston for Cam to have a shunt placed. The shunt was going to ensure that his ventricles didn't over expand once he had his cranial advancement surgery. Because Cameron already had a ventricle that was a tiny bit larger than normal, they thought that once the surgery to correct his fused sutures was done that because they were cramped they may over expand and that could in turn cause his bones to grow incorrectly, so the decision was made to place a VP shunt.

Before this shunt was placed he had an assessment to determine where he was developmentally. At that time his chronological age was 10 weeks, but because he was early they considered him to be 5 weeks. The assessment determined that he was developing like a typical 5 week old, and in alot of areas like that of a 10 week old. So they decided that the only services he really qualified for would be physical therapy because of his upcoming surgeries and the assumed delays he would suffer because of them. So we then began receiving physical therapy once a week.

After his shunt surgery I remember the Dr's telling me his development should really take off, and it did. Before the surgery he really wouldn't interact or smile, then a few weeks after his shunt he was a smiling machine. When he was 3 months old I remember thinking how his personality had really started to come out, and the developmental assessment people thought so as well. However, now that we are getting closer and closer to Cam's first birthday his development will be observed alot more closely. So today she determined that he is still developing within normal ranges for his age, and even though I can see that he isn't able to be compared to a typical 7 month old, I'm blessed that he is making progress, and that the shunt continues to do it's job!!

Rainy Saturday

So today was nothing out of the ordinary for us, yet I love these days. I love it when my husband is home, and we have no place to go, and it's raining outside. Cam loves it too, because he has both mommy and daddy to pay attention to him, and he is all about some attention these days.

With the recent events with my grandmother we have been gone alot. We were down in Winston Salem alot last week, and when she came home we were out and about trying to get her settled. So this week has been pretty non routine for Cam, and he likes his routine. But throughout it all he kept his cheerful little attitude, and was super pleasant and sweet!

So today, on our lazy family day at home, we made sure to get in some good cuddle time and play time with Cam. But when I left daddy and Cam alone downstairs so daddy could put together a book case and watch Cam, I then returned to find our bedroom t.v in the downstairs den and Cam about 2 inches from the screen. When I asked why in the world would he put Cam so close to the t.v, Paul informed me that he had rolled himself over that close....He was really wanting to watch some basketball..:)

Today was a good day! I love good days! So here's to more awesome Saturdays with my two favorite boys. Hope everyone else has a wonderful rest of the weekend.

God is Good, Right?

I bring no picture along with today's post....just words. Last weekend my grandmother was taken to the hospital because my mother expected that she had suffered a stroke. She was acting a little strange, and the left side of her body seemed to look a little different. So off to our local hospital they went. After a stroke evaluation and a CT scan it was determined that she had a large mass of some sort on her right frontal lobe. So she and my mother were told to head to Winston where she could be evaluated by specialist. So on Friday they arrived at Wake Forest Hospital, and by 3:30 that morning they had completed an MRI that determined that she did in fact have a large mass on her brain and that they wouldn't know what kind or how severe until they did surgery. So at 6:30 Sunday morning they wheeled her away for what would be a 9 hour surgery. That evening as she was transferred to the ICU after the surgery, the neurosurgeon came to speak with our family telling us that what they had found wasn't good news. On her right frontal lobe she did have a mass, and it was CANCER. Not just any cancer.......the worst you could possibly have...something called Glioblastoma. This type of cancer is very aggressive and causes little tendrils to wrap around your brain. It is not curable, and doesn't have a survival rate.

WHAT?????????? Our 61 year old, perfectly healthy, wonderful grandmother has what? We were all in shock, and terrified. The neurosurgeon continued to talk about statistics and that without treatment it holds an average of 3 months survival rate, and with treatment the average survival time is one year. It is still hard to believe. It's still impossible to be told that you are going to lose someone you love so much. But that is where we stand. She was released from the hospital yesterday, with a smile on her face and a giant scar across her freshly shaven head. She's a fighter right? But how can you fight something that is ultimately going to kill you? GOD is good right? But why does he let these things happen to such good people? I know that is somewhat of a rhetorical question...everyone that is going through a hard time says this...and at the end of the day, there are alot of people that are suffering asking the same thing...but when these things continue to happen in your life...I think, at least for me, I struggle with remembering that God is good.

After we found out about Cameron, and I hated life, and then regained my faith, I remember praying that if God put this in my life then he would give me the strength I needed to get through it. So When Cameron was born, I prayed that the things Cameron was going through was to make us stronger in our faith, and bring us closer to God, and it did! And even now as Cameron is developing and growing, my prayers are that he is going through what he has to go through for a reason. But then we are hit with this!!! This year has just been so difficult, and just when we are at the point where we are praising God for the good, we get hit with something else, something horrible, and something that makes us cry..."God you are supposed to be GOOD....where is the good in this, WHERE?"

Our grandmother has spent the last 6 years of her life taking care of our grandfather who had Alzheimer's. He was unable to care for himself, and caused alot of strain on her. But she did it gracefully and with a smile on her face. She gave him all she had, until he passed away 2 years ago. Now that she is finally able to regain her life, and enjoy herself, she is hit with this. IT'S JUST NOT FAIR. We are still in limbo as to what her decision will be about treatment. Of course we all want her to take the treatment because non of us can bare the thought of loosing her in 3 months, but the treatment is grueling, and hard, and even if she does live for a year it would be filled with Dr's and chemo, and therapy. But we have read about people that have lived longer. That have beat the odds. And although there is no cure and they do eventually pass away, they have a few good years left. So we are encouraging, but leaving the decision up to her.

Deep down I know that God is good. I know that he has a plan, and that through this experience we will grow closer to him.....I know this. But right now my heart doesn't feel this. All I feel is sadness and heartache. I'm confused, and honestly I'm in doubt. So for all of you readers out there that have been through these bad times, and you now have that closeness with God, send up a prayer for our family.....most importantly our sweet, precious grandmother. God is the ultimate healer and a miracle would be......well just that....a miracle.

Flashback Monday

First, I need to ask for prayers for my

grandmother, who was diagnosed with stage 4 brain cancer this past weekend. Please pray for her as she deals with the news and for Gods healing.

So since I've started this blog a little on the late side, I thought that I could have a day where I post about things that we've been through already with our little warrior. So here is to Flashback Monday's!

Today I'm reminded of how tiny and helpless Cam was when he was first born, but more specifically how he looked after his very first surgery. As I mentioned in a previous post when Cam was four days old he needed surgery to repair something called esophageal atresia with a t-fistula. This fancy word put simply meant that his esophagus didn't attach to his stomach, and that he had a small fistula that connected his trachea to his esophagus. This was discovered when Cam was three days old and we thought we had a healthy little boy on our hands. They attempted to put a feeding tube down his stomach because he was still needing the breathing tube(well little did we know at the time, but that was why)and he wasn't able to take food by mouth. The nurse attempted several times but said that she felt like something was stuck. So they did an x-ray and it was determined that his esophagus was not attached to his stomach and that he would need surgery to repair it very soon.

So the next morning I kissed my sweet baby goodbye as they wheeled him away. Even though I was scared for him to have surgery, that was probably the easiest one for me because I was still pretty drugged from my c-section and I really didn't know the complexity of the issue at hand. Cam went to surgery at 9 am, and didn't return until 5 that evening. IT WAS A LONG DAY! But when he was back in the NICU and we were able to see him, I just remember thinking that he looked dead. He was lifeless and so pale. And to make matters worse he had an episode where he wanted to stop breathing even on the vent, so they ended up switching him to a different vent that looked very scary and caused alot of noise. This awesome device was called the JET, and caused Cam's chest to move very rapidly because it was pumping alot of breaths in him at one time so that he didn't have to worry about breathing on his own, and to help with that they gave him a pretty powerful paralytic, and for the next few days that was how he looked...paralyzed. My helpless, tiny, precious Cam. This was the only true time when we weren't sure if he was going to make it.

But proving us wrong as he does so often, Warrior Cameron was back to life in no time. He became active and was able to be extubated(get the breathing tube out) a week after this grueling surgery. He is my hero, and I'm so blessed to have this amazing miracle in my life.

To sit or not to sit

Because I am obsessed with child development right now, I sometimes find myself pushing Cameron too hard to do the things that I think he should be doing for a 7 month old. When he was born at 5 weeks early I was told by all the Dr's and therapist that I couldn't consider him at his chronological age, but that I needed to take into account that he was early, that he spent 8 weeks in a hospital, and endured 3 surgeries before he was 4 months old. And while that is all fine and dandy, I still cant help myself comparing Cam to other 7 month olds and seeing what he isn't able to do.

I hate that I struggle with his development so much. I wish that I just felt that whenever he does things is when he does them, and that is fine, but on the inside I don't. I have two friends that have babies very close to Cams age. Baby Jenna was born two weeks before Cam, and Addie Grace Came the week before. And while granted they were both full term, non hospitalized babies that have endured any surgeries they are still cam's same age. And I understand that girls develop faster than boys at this age, but the things they can do or are doing seem to be amazing compared to Cams development, and that kills me. I'm sure that this struggle is just one of the things that I need to work on. I'm still new at this whole being a mom of a child with special needs, and although I feel that my husband and I have come along way there are still things we need to work on to be the absolute best parents we can for Cam.

But on a more positive note and the reason for this post is to announce how Cam does meet his milestones and proves me wrong on a daily basis and I LOVE IT! Let me tell you, when Cam does meet his milestones, it's a party at the Elliott house!! And this past week Cam has learned to SIT!!! He has not perfected it just yet, but he is well on his way.

It's almost like it happened overnight. One day I was struggling just getting him to sit sandwiched in between the boppy and then all of a sudden he is sitting all by himself. The first couple of days it was for a few seconds at a time, and now he is mastering minutes. So we are definately getting there. This kid amazes me everyday, and reminds me of how precious the little things in life are. No Cam isn't a typical 7 month old in all areas, but I'm reminded daily that he shouldn't even be where he is today, He is a happy, healthy, beautiful boy, and I'm learning to enjoy what he does more than have sorrow for the things that he hasn't gotten to yet!

Starting Today

So I hope that through all the other posts I have been able to somewhat explain how our life has been the last year. We have definatly been living in a whirlwind, but when I take the time to slow down, I realize how amazing life has been and how wonderful Cam has been in our lives. Starting today I hope to keep track of our journey as a family through this blog, not only to have a record for myself :), but to also hopefully inspire and help others that may be going through a simliar experiance. I definatley don't have all the answers, and God knows I still have some bad days, but there are definatly more good than bad, and I can't wait to share Cameron with everyone! So hopefully you enjoy reading about our little family and our crazy life, and I look forward to sharing!!
Love,
Paul, Jessica, and Cam

Pics of Cams NICU time

Cam was such a sweet baby. He showed his amazing personality from the beginning. Even though he had that pesky breathing tube in, he was still showing us what a little stinker he was. When we finally got to hold him without the breathing tube, it was a day that I have cherished. I could have never imagined being dealt this hand in life, but with a little faith, some good friends, and a baby as sweet and cute as Cam i've learned just how strong I am and how amazing life can be when you stop worrying about the little things!

Pictures of Cams birth

What Cam has been through so far!

On August 15th 2011, at 5:15 pm, I gave birth via C-section to Cameron Joseph Elliott. He came into the world weighing 6lbs 6oz, and was 19 1/2 inches long. He had trouble breathing on his own so he was intubated and transfered to the NICU. During the next week in the NICU we discovered that while mild in the sense of the syndrome, Cameron had some internal issues that needed to be dealt with. At four days old he had his first surgery. His esophogus didn't attach to his stomach, something called esophogeal atresia, so he needed that repaired. He came out of the surgery still on the breathing tube, and on a heavy paralitic to keep him calm so that he could heal. One week later the breathing tube was out and Cameron was on the road to recovery doing very well!

Then on the day they did a test to make sure the site had healed correctly they also discovered that he had something called a malrotation of the intestine. This means that his small intestine was flipped the wrong way, and they needed to repair that as well. So off to his second surgery at only 2 weeks old. After this surgery there were some complications and he ended up staying on the breathing tube for longer than expected, but he once again came off and started to thrive.

We stayed another 3 weeks in the hospital and we were released September 26th to come home! Our first week at home was fantastic. We were terrified, but Cameron was a great baby. He slept well at night, and was eating like a champ, then on day 8 we woke up to a very sick baby. Cameron had stopped breathing. We called 911 and he was rushed to our local hospital where he was later transfered back down the Winston where we ended up spending another 2 weeks. It was determined that he was suffering from aspiration pneumonia. This was determined after various tests came back negative...like and EEG to check for seizures, a spinal tap to check for meningitis, and lots of other blood tests and scans to see if he had to much fluid in his head or a bacteria in his blood.

So when our time to go home came around again, we were very scared. But we packed up our now 8 week old and headed home yet again. Then two weeks later Cam needed his planned surgery to place a shunt. This shunt helps to drain the extra fluid that Cam had building up in one of his ventricles because of the premature closure of the sutures. The surgery went great, and three days after that we went home. We stayed home all the way to January of 2011...a whole 2 months.

On Christmas Cam contracted pnuemonia. So we spent about 5 days in our local hospital making sure he didn't get any worse and that his breathing was monitored very closely. Then when he started feeling better we headed back home.

Since then Cam has had his major head surgery which was on February 9th, 2011. He made it through that great, and was home after 6 days. He has had a rough time this cold and flu season with contracting a couple viruses...but other than that has been doing great!!

We have alot of love for our little warrior and know that God is going to do great things through Cam. We are excited about having this blog to share his journey with others that may be experiancing similar things and hope that we can bring inspiration to those that find out their child is going to be diffrent. It's the hardest most amazing journey i've ever been on and I'm so greatful that i've been given this most precious child, who has taught me more in the past 7 months than i've learned in the past 25 years.

How we Felt

Hearing that there is something wrong with your unborn baby is one of the hardest things I think that a pregnant woman can go through. For me it was this intense feelng of hurt, and dissappointment. For weeks I struggled to smile. I didn't know if I even wanted to have him anymore. I know that sounds awful. And even now as I'm writing, I think how awful people must think I am. But if i'm being honest, I felt very certain that I would rather just have a miscarriage, than to have a baby with a disability.

I cried all the time, and it was really hard for me to interact with other friends that were pregnant as well, without hating them. I hated them for having happy pregnancies and having perfect babies. I lost sight of God, and really questioned how there could be a God that loved us so much, yet could cause us to feel such heartache. I could go on and on about how depressed I felt the weeks following the news about Cameron....but I won't.

I won't because i'm ashamed. Because now that Cameron is here, looking back I can't believe I even had the thought that I didn't want him. He has brought us so much joy, and even through all the pain and stuggles, our little Cameron is the happiest, most pleasant baby i've ever met. His smile is the best thing in the world, and he is my most favorite thing! I love that little boy so much, and I hate thinking back to all the emotions I let myself feel while he was still in my belly. But that was then and this is now....and Now We feel so BLESSED!

What the heck is Apert Syndrome?

Apert Syndrome:
Apert Syndrome is a genetic defect and falls under the broad classification of craniofacial/limb anomalies. It can be inherited from a parent who has Apert, or may be a fresh mutation. It occurs in approximately 1 per 160,000 to 200,000 live births. Apert syndrome is primarily characterized by specific malformations of the skull, midface, hands, and feet. The skull is prematurely fused and unable to grow normally; the midface (that area of the face from the middle of the eye socket to the upper jaw) appears retruded or sunken; and the fingers and toes are fused together in varying degrees. Apert syndrome is named for the French physician who first described it, E. Apert, in 1906.

Pretty scary stuff huh? That is what we thought when we googled it the first time...and to go along with this scary definition were terrifying pictures of worst case scenarios. Luckily we were able to find a site called Teeters Page, and that was and has been a life saver!

So pretty much Aperts is a syndrome that causes the bones in the skull to fuse too fast, and when that happens it causes the head to take on a weird appearance. It can be as mild as two bones fusing called the coronal sutures and that is all, or it can take on much more severe cases where all the sutures in the skull fuse prematurely.
The hands and feet also fuse to soon, and this causes the hands to take on many diffrent appearances. Some are mild and all five fingers are visably seen, or some are more severe, where the hands take on a rosebud effect and it can sometimes be very difficult to ensure the child to have five fingers on each hand, even with multiple surgeries. Aperts also affects the midface. Causing the eyes to be bulgy, and the midface to seem retruded. All of these characteristics are surgically corrected, but thinking about your child having this, and surgery, was and still is very overwhelming.

Where it all began.

In December of 2009, My husband and I became pregnant with our first child. We had been married for 2 years, and although we wanted children, we were not planning on this pregnancy, but greatfully took it and were excited about starting our new journey into parenthood. I officially found out I was expecting on January 16th of 2010, thus starting this crazy journey that we have been on for the past seven months.

When I was 18 weeks pregnant we went to that glorious appointment to find out whether we were going with Cameron of Ava...(our decided upon names). Not only did we discover that Cameron would be here in mid September, but we were also told that he had something called mild ventriculomegally. This meant that in one of the ventricles in his brain there was a little extra fluid. We were assured that this was probably not a big deal, and that usually these things resolve themselves, but we were told that we needed to have a follow up with a specialist to make sure everything remained unchanged.

This news terrified us. No one wants to hear that there could be something wrong with thier baby...and we were very worried that this meant something was wrong. However two weeks later and after much anxiety we went back for another ultrasound and at this one everything looked great! The fluid had decreased and the ultrasound wich was 4D showed a very healthy, very active 20 week old fetus. So onto planning for our sweet baby Cameron it was. They wanted us to come back 4 weeks later for one last check to make sure the fluid stayed low, and then they said if all checked out wich they assured us it would, then we wouldn't have to come back!

4 weeks later we recieved the most horrifying news of our lives. During this ultrasound we got to see the most preciouse little face, and the most sweet little limbs, but according the the tech, it was very difficult to see his fingers. This triggered an alarm with the genticist at the office and she came into our room, and told us that she thought our baby....our perfect, wonderful, little boy had APERTS SYNDROME. Aperts syndrome? What the heck is that, we asked. Then in a blur we listened as she explained the charicteristics and what all could possibly be wrong. I cried and so did my husband, as we sat in the car and wondered how and why. What had we done to deserve this kind of news? How could we be those people that had a baby with problems? WHY....HOW.....We were crushed.