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!
Wednesday, May 2, 2012
Saturday, April 14, 2012
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.
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.
Monday, February 13, 2012
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!
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!
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