Friday, August 22, 2014

20 Months

It's so crazy to me that Camden will be 2 years old in just a few short months. Children grow up so fast. I remember people telling me after Camden was born that the first year was tough. If you can get through those first 12 months then you're good. I remember thinking back then that a year seemed like a lifetime. How on earth was I going to get through it? Obviously we did, and now the second year is almost gone. It has blown by so fast and I'm pretty sure I'll shed some tears when Camden's birthday rolls around. 
I thought I would update on what's going on with the little guy. He had his cardiology appointment in June and as always it was pretty much the same. The VSD is still the same size but it doesn't seem to be causing any issues. I feel like a broken record when I talk about this subject. We are grateful that we can just keep waiting and watching and hopefully at one of these appointments we will get the news that it's closed! The doc thinks that it's causing a little bit of extra fluid to build up in his lungs but not enough to start Lasix back up. If he gets sick a bunch this winter then we may have to re evaluate. Otherwise, we go back in a few months to check again.
He also had a GI appointment in May to check his growth and follow up on his reflux issues. He still is on Prilosec for the reflux and we can't seem to stop that yet. I've tried to wean him off but it always ends up bad, so we will just keep him on it for now. At this appointment he hadn't gained any weight for a few months. This was the first time his GI doc was a little concerned only because he stopped going up on his growth curve. He started Camden on Periactin to increase his appetite but I haven't given it to him. He actually eats pretty good and is always hungry so I didn't see the need. He wanted me to have it just in case. I left that appointment feeling pretty down.
However, at his ENT appointment in July he weighed 19 pounds! He gained one pound in just a couple of months. It probably doesn't seem like much, but when you only gain an ounce in 4 months, it's a ton! I was so dang excited and obviously Camden was too! They don't really track his weight at the ENT but they let me weigh him for my own benefit. It looks like one of his tubes fell out so he will probably get them replaced in a few months. He will probably have his adenoids out at that time too. That stuff we can deal with...easy peasy. We will go back to the GI doc next month to check his growth and I'm hoping this weight gain is correct and we won't have to stress about it for now!
We decided to stop ECI for his therapy a couple of months ago. I felt we were not getting what he needed and it just wasn't working out. We have decided to start a Neurodevelopmental program and I'm pretty excited about it. We had his evaluation a couple of weeks ago and a program was designed for him and it's something I can do at home with me as the therapist. It seems pretty intense and overwhelming but I'm hoping with time I'll get used to it. We haven't started full blast but I will when Carter starts school next week. Camden will see his neurodevelopmental therapist every for 4 months for a re evaluation and she will make changes to his program based on what he needs. Wish us luck!
Camden is still working very hard on pulling to stand. I think he's having difficulties with this because of the way he crawls. It puts his legs in an awkward position so he always gets stuck. We are working on it. It seems weird to say that I have a 20 month old who can't pull up to stand. Oh well, he will get there! I definitely think walking will come very late for this kiddo. Good thing he's light since I'll be carrying him everywhere. ;)
We've kind of had a breakthrough in the language and communication department. This child would not use any sign language until recently. I really was starting to think he wasn't getting it because he wouldn't even try. He did a couple of signs a year ago and then they disappeared. About a month ago he started showing me all the signs he knows. He's such a stinker. He has about 10-15 signs now. He will only do them if I say the word though. He doesn't come up to me and randomly sign something he wants. He still only has about a couple of spoken words but he babbles constantly. He's very good at imitating me and he tries really hard to say certain words. Maybe one day he will let me get all of this on video! Doubt it.
We are also working on using utensils. He grabs it and puts it in his mouth but then immediately throws it on the floor. Ugh. Again...he will get there.
Camden has for sure turned into a toddler. He tests his limits, he gets into everything, and throws some major tantrums. He understands the word "no" but he thinks it's very amusing to ignore it. He will purposely look at us and smile when he's about to do something bad. I haven't quite figured out to handle this. He doesn't understand time out and me being firm is just hilarios to him. Carter was a super easy toddler so this is all new to me!
It's hard to believe summer is over. Carter starts school on Monday and I'm still pretty emotional about it. He is extremely excited though and I can't help but be happy for him. I will miss my buddy, but it gives mommy and Camden lots of bonding time! 

 Camden is turning into Mr Personality!
My handsome little guy in his Uncle Tommy and Aunt Amy's wedding. Growing up way too fast! 
 Since he refuses to take naps a lot these days, he will just pass out when he can't take it anymore. Lol.
Love his smile! Melts my heart every time!
He's getting over his fear of motion!
These two boys adore each other!
I love when all four brothers are together.

Sunday, August 3, 2014

Now I Know Why

When I was pregnant with my oldest I was a nervous wreck. I don't know if it was because it was my first pregnancy or if it's because I'm an anxious person anyway.  I had all the prenatal testing done and I remember it not even being a question for me because I just wanted to know. I was one of those mothers who always said "I just want a healthy baby." That phrase has a whole different meaning to me now. I remember waiting for the call about the results of my blood tests and hearing the words that everything was fine. I breathed a huge sigh of relief. The moment I got pregnant with Camden I felt that there was something different from the very beginning but I couldn't quite put my finger on it. The doctor asked me if I wanted to get all the prenatal testing done and I immediately said "no." I didn't even think about it. I never even discussed it with my husband. This was extremely out of my character because I am a planner. I like to be prepared in all situations. At the time I just felt like I didn't need to have it done and I had no idea why. I have always had the mentality that I would keep my baby no matter what. End. Of. Story.

Shortly after Camden was born I started reading that the abortion rate for those with a diagnosis of Down syndrome was high. At one point I read it was 90% and other places I read it was closer to 70%. I'm not sure what the accurate number is today, but I know it's still pretty high. I've read numerous articles and have seen several discussions on the topic of prenatal testing. I don't chime in or participate only because I always felt like I didn't have a place.  How could I advise a mother or say their decision is wrong when I haven't had to make that choice before.  I don't want to judge anyone for the choices that they make.  However, I feel a lot of the time the choice of abortion is made because one is misinformed, given negative information, or given no information at all and of course we want to change that.  Before Camden was born I did not know much about Down syndrome. I only knew what I had learned through school and during my nursing career. I didn't know anybody that had Ds and I didn't have any friends or family that knew anybody that had Ds. In a sense, I was clueless. I'm sure that's how a lot of mothers feel when they get that prenatal diagnosis. I imagine it's an extremely scary time for them.  Most of my mom friends did receive a prenatal diagnosis and they made the decision to keep their sweet bundle of joy.  Several still went through the process of grief, but they always knew they would bring their baby into this world.  I don't know what that's like because I haven't been in their shoes, but again I feel I would have kept my baby regardless.

After saying all of that, I can't stop thinking about a conversation I had with the hubby a few months ago.  We were on a date night (a very rare occasion) and I randomly brought up my pregnancy.  I don't know where it came from, but I think it was something that has always been on my mind and I was too scared to ask. I asked him straight out "if we knew that Camden had Down Syndrome would you have asked me to abort?"  He looked at me and simply said "probably...yes." My eyes filled up with tears and I felt a little stab through my heart.  All I could think was "thank God we didn't know."  That was the end of the conversation and we never talked about it again. Now I know why I didn't have any testing done.

What is the point of this? I really don't know. Maybe I just felt the need to get this all off my chest because I've been carrying it around for a while. I'm horrified at the thought that we could have possibly chosen not to keep Camden. I'm ashamed. It makes me cry everytime I think about it. I didn't want my friends and family to hate us or judge us. Maybe it's because I'm trying to find my place in this whole prenatal testing thing. I want to be an advocate, a resource, and to be helpful the best way I know how. Most of all I want other moms to know that I was almost in your shoes. I could have been in that position of making a very difficult choice.  If you were to ask my husband now he will tell you a million times over that he would have kept this boy no matter what after knowing what we know now. We are blessed beyond measure. Our life is still full of challenges, but the joy and the love far outweigh any challenge that could ever come. We could not even try to imagine our lives without Cam. That's what I want to tell other moms.