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
Tuesday, April 7, 2015
Tuesday, March 19, 2013
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!
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!
Friday, October 26, 2012
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!
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!
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