Sick Sick Sick......

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

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

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

No new hands for Cam

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

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

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

The longest and shortest 9 months of my life

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

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

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

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

Bag of Emotions

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

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

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

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

No more Helmet!

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

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

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

Warmer Weather

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

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

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

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