To Parents of Special Needs Children, This is For You

To all the parents out there who have children with disabilities or special needs, who endure stares and whispers, and ugly comments, who can't post pictures of their child on Facebook without strangers making rude comments about a child who lives every day with struggles that most people couldn't imagine and couldn't handle. This is for you.


 To anyone out there who feels the need to make an ugly comment, stare, point, or whisper because someone happens to look different than you or your children, or what you deem to be "normal":

You are blessed with a child that doesn't have special needs, with a child that doesn't have a disability, with a child that hasn't had to battle a life threatening disease. Not everyone gets that blessing. You should be down on your hands and knees thanking God that your child isn't blind. You should be down on your hands and knees thanking God that your child can breathe without the help of a vent. You should be down on your hands and knees thanking God that your child can hear without the help of Cochlear implants. You should be down on your hands and knees thanking God that your child doesn't know what it's like to have chemotherapy medication running through their veins.You should be down on your hands and knees thanking God that you get to watch your child take his first steps, and run and play, that he doesn't need a walker or a wheelchair to get around. You should be down on your hands and knees thanking God that your child has never had to have surgery, that you don't know what's it's like to sit in a hospital room and watch your child fight for his life, struggle with pain, struggle with things that some adults have never had to deal with. You should be down on your hands and knees thanking God that you're healthy, that you never had to endure these struggles yourself, let alone your children.

But yet, you can't find the time to do that because you're too busy making fun of a child who's endured more in two years than you've ever had to endure in your whole life. And let me tell you something, if that's you, your soul is black. Your soul is dark. And you need to find Jesus, and you need to get down on your hands and knees and thank Him that you were blessed with a healthy body and healthy children, because not all of us get that lucky.

Before you ever opened your mouth to make a rude comment, that parent already knew her child was different. She didn't need you to tell her. That parent already knew that her child's birth defect was visibly noticeable before you pointed it out. That parent already knew that there would be people like you who open their mouth and react before they take the time to think about what they say and how it might impact others. That parent knew, long before they ever knew who you were, that there would be people like you who don't want to know the truth, the whole story, who just want to use their words to hurt and tear others down. But let me tell you something, you should be the one being stared at, because normal people don't go around trying to destroy others.

Now that doesn't mean special needs parents are not blessed. We just get blessed in different, and usually BIGGER, ways. Let me tell you something, if I could go back, knowing what I know now, knowing the struggles we would face, I wouldn't change a single thing. I would never change who my son is and who he is becoming, because despite what you might think, and despite what you see, HE IS AMAZING.

So next time that you want to open your mouth and say something rude or hurtful about my child, why don't you drop down on your knees and thank God instead that your children haven't had to go through what mine has.

Christian is turning 2!!!!

Christian's 1st Birthday Picture :)

February 18th is a huge day for us! It is a day to dance and sing and cry and celebrate the birth of a miracle child, our miracle child! Christian came into the world on that day in 2011, and boy did he ever make an impact! The world will never be the same since his first breath! I may be guilty of going a little overboard with Christian's birthday, but that is why! I am celebrating more than just a birth, I am celebrating a miracle! :)

Wow!!! This time last year, I was an emotional mess because my sweet little boy, who doctors predicted might not even live, was turning one! Can you imagine how emotional I am this year? That sweet little boy is now a toddler, he has a beautiful little brother on the way, and I am very pregnant! In other words, please expect the water works at his party this year!!!! :)

This year, just like last, we celebrate so many accomplishments, milestones, and joyous times! Christian learned to crawl at 14 months, he has learned to say many, many words, he usually meets all of his goals in his therapies every 2 months, and he makes his mommy and daddy so so so proud! Christian has traveled to 8 states in the second year of his life. We have been to North Carolina (on a lay over), Virginia (to shoot a pro-life video), to Ohio (to visit Nationwide Children's Hospital), Florida (for vacation), Alabama (on our way to Florida for Vacation), New Orleans (on a lay over), Arizona (on a lay over), and California (for the West Coast Walk for Life). He gets around doesn't he?!?! :)

And let's not forget that when Christian was 15 months old, his YouTube video went viral and spread across the world, making him a little celebrity, and gaining us so many new and amazing friends!

What a year it has been! Can you imagine if I had not chosen life for him, what this last year could've been like? This blog would not exist, and I wouldn't be telling you about Christian's 2nd birthday and all he's done this year. Many of you reading this wouldn't even know I exist. I would not have met so many of you and have so many amazing friendships that I didn't have last year. But most of all, I would not know the absolute purest joy and love in my life, my sweet Christian. :)

Everyone is asking about his birthday this year and what you can do for him. So, I have a lot of ideas that I wanted to share with you all, which is why I am putting it in blog form!

Of course, we have an Amazon wishlist where you can always find things that Christian would enjoy or that we need. The link is here: http://amzn.com/w/1K7T6QF0UOFGV
Of course, that list does not have a ton of stuff on it, because I try to be realistic and not ask for things we don't need.

Secondly, if you find that the list just doesn't have what you'd like to send, we welcome any gifts and we appreciate them so very much! I can't think of a single thing we've ever received that we didn't enjoy! If you would like to ask me about a present before you buy it just to make sure we don't already have it, please feel free to email me at laceybuchanan@gmail.com. Also, if you send me an email when you are ready to send a gift, I will happily tell you our address to send it to. Our address is not private by any means and we will give it out for mailing purposes, but I do try not to post it in public forums. :)

Thirdly, if you prefer not to send a gift, but would still like to do something, my friends Mary, Candice, and Marisa are working VERY VERY hard in actively running the GiveForward website and it's fundraising campaign to help raise money for Christian's medical expenses that his insurance is refusing to pay for. I can assure you that every penny that is sent there gets sent to us. Mary, Candice, and Marisa get nothing for doing this except my undying gratitude and love! They are amazing! The link for that is here: http://www.giveforward.com/laceyampchristianbuchanan

I have some more exciting news for anyone who may have already done these things in the past or is looking for another opportunity to give for Christian's birthday. Many of you have heard about Special Kids, where Christian receives all but one of his therapies and where he goes for daycare (aka nursing care) twice a week while I'm at my doctor's appointments, etc. They are totally non profit and run on love from others. They help kids with all kinds of special needs in all walks of life to overcome obstacles that they face. We love Special Kids with a passion in case you can't tell! They have been so so good to us and they love Christian and do so much for him that I couldn't do alone!

So, they have started a campaign for the month of February called "Do it For Love" with Valentines coming up and all.  So I though it would be neat to celebrate the Do it For Love Campaign to coincide with Christian's birthday and anyone who wanted to could give to Special Kids in honor of Christian during his birthday month! There are several things you could do!

If you are local, please consider signing up for the Special Kids Race, and running for Team Christian! We will be there this year in full force, wearing our Super C shirts! The race is a fundraiser that Special Kids puts on every year. Runners (and walkers) from all over come and join in the 15k, 5k, or 1 mile fun run! We will be doing the 1 mile fun run again this year considering I will be 8 months pregnant! :) The cost of the race is minimal, but the impact you can make by participating is huge! And Christian benefits from every penny that Special Kids raises! You can sign up for Team Christian and the Special Kids Race at www.specialkidsrace.org

If you are not local and can't come run with us, but are still interested in helping Team Christian reach it's fundraising goal for the race this year, you can donate directly to Special Kids at our fundraising page also known as our "impact page" because we are impacting Special Kids in such a positive way! If you donate here, the money goes straight to Special Kids, and it counts toward Team Christian's fundraising goal! You can check out our impact page and donate here: https://impactspecialkids.com/fundraiser/team-christian12

Another way that you can help Special Kids if these first two options don't tickle your fancy, Special Kids has started an Amazon wishlist as well. It is full of things that they need in their therapies and nursing to help the kids be all they can be and get the best care possible. If you would like to browse their wishlist, please visit here: http://www.amazon.com/gp/registry/2XMJVD5Z8RFTS/ref=cm_sw_em_r_ws_Beearb0R3NG8Q_wb
And if you see something that you feel compelled to send them, please do! Anything purchased on that list will go directly to Special Kids and will be used for the kids! It is very possible that some of what is purchased on this list will be used for Christian!

So, I hope I have given you all some great ideas about Christian's birthday and ways that you can get involved! Please feel free to email me if you have other ideas or questions about his birthday!

Also, for anyone who is close enough to attend his actual party, here is the Online invitation! We would LOVE to have you join us!!!  https://www.facebook.com/#!/events/330152270419702/

My Experiences with Bullying

For anyone who follows us on Facebook, you have probably, at one time or another, seen someone make a rude or hateful comment on a photo I've posted of Christian. It has been happening pretty much since he was born. In fact, much of the reason that I decided to make the video that went viral was because of all the negative comments that we would receive, whether through social media or face to face when we were out in public with Christian. And I have to say, I am tired of it. I sometimes find myself unable to deal with a hateful comment on a particular day, or exhausted with the idea of checking my email and finding another rude comment left on my YouTube Channel. So this blog is my outlet to vent my frustrations and share my wisdom on the matter. I consider myself a professional at handling bullying, after all, considering all the bullying I've dealt with over the last few years.

At first, the comments hurt. I remember the day that I first took Christian out in in public, to the grocery store, and many of you have heard me talk about that experience before. I've spoken about it multiple times in interviews. The part about that day that I remember the most vividly was the feeling in the pit of my stomach that those comments left, and the tears that I couldn't hold back as I put Christian in the car and drove home. I remember getting Christian home, wrapping him in a blanket, and cuddling him up close to me, and telling him that those people were wrong. I told him how beautiful he was, and how he was the most perfect thing I had ever laid eyes on. He was only 2 or 3 months old then. He had no idea what those people had said. Heck, he still doesn't understand things like that. He also had no idea what I was telling him. But I said those words to him, I guess, maybe as my way of responding to the hurt. I could not comprehend, and still don't,why someone who had no idea who we were felt compelled to say hurtful things about an innocent child. What could their purpose be except to hurt us? What motive could they have except hate?

I didn't tell anyone about that day for a long time, especially my husband and my family. In fact, I'm not sure they had ever heard that story until the video went viral last May. I decided that the pain of knowing what those people had said was just another burden that I didn't want them to have. We were all already so heartbroken over the last few months, with finding out Christian was blind at birth, our 4 miserable weeks in the NICU, one surgery already taken place and another scheduled for just a few weeks from then, and the struggles we had in taking him home and trying to figure out how to care for him. I didn't want to add yet another weight to my family's already broken spirits.

So I went on dealing with these comments by myself as best I could. I even did experiments. I tried different methods of reacting to the comments to see which reaction would have the most positive affect. I tried getting upset, being rude, explaining myself, questioning them, ignoring them, you name it. Occasionally the scenario would play out in a good way, and leave me feeling a little better, but that wasn't usually the case. Usually, no matter what I said, the conversation was awkward, I was clumsy, and I left with that familiar pit in my stomach.

After the video went viral, because we were in the public eye, the rude comments became more frequent, and more vulgar. Not that the rude comments were the dominating factor, because they weren't. The majority of the comments we received were so loving and heartfelt that many of them brought me to tears. But the rude ones still stung none the less.

At one point, on my YouTube Channel, I had a group of individuals who apparently banded together to attack me. Four or five people spent one entire day leaving comment after comment, unprovoked, with no replies from me or anyone else. The comments ranged from things I couldn't understand such as an apparent reference to their so called "group," to stating that they planned to "rape that baby in his eye sockets." There were dozens of comments in between that included references to masturbating to photos of Christian, threats to murder him and rape me if we were found, and you get the idea. Comments like these didn't leave that pit in my stomach. They were obviously comments made by people who were sick and unstable. They did, however, terrify me. I took screen shots of all the comments and filed a complaint with the FBI's Cyber Crimes Unit. I got an e-mail almost immediately informing me that they had received my complaint and were looking into it, and a phone call a few days later from my local FBI, getting all the information they could collect. The officer that had our case finally concluded that the people who made those threats were not in the United States, and therefore the FBI wasn't going to go any further at that time due to a lack of threat of danger, but that if anything else presented itself, they would take appropriate action.

Although I've not received any comments to that extreme since that instance, I have received plenty that were just vile and full of hate. I've had people tell me that I should be ashamed for exploiting Christian, ashamed for letting him live such a miserable life, ashamed for posting his photos on Facebook and expecting not to get rude comments. I've had people tell me that my "kid is a walking abortion." I've had people post hate comments on my photos and insist that they won't stop until I block them. I've had people who get mad at me because they saw a photo I posted. They tell me that they didn't want to see it and it's my fault. Even when I explain to them that I didn't post the photo on their Facebook page, and that they must have seen it because one of their friends liked or commented, they still curse at me until I block them. My favorite new term has to be "kill it with fire" which is apparently a "common phrase" nowadays, used by people my age and even younger as a bullying tactic. When I was younger, bullying consisted of "fart face" and if you really didn't like someone, "retard." It's a sad commentary on our society when threats to kill someone are just common place and overlooked as if the person had been called a "fart face."

Two nights ago, I saw a guy posting comments on a photo of mine, saying how dare I photoshop photos of my kid to get pity. I sent him a friend request and a generic message, hoping to just get the opportunity to chat and "win him over" so to speak. I found out he lived about an hour from me, so I started with small talk about that. I didn't mention his rude comments at all or Christian. His response was to call me a sick person and to leave him "the hell alone." I replied saying that I noticed that he had lived closed by and just wanted to say hi, along with an apology for bothering him. He replied again calling me evil. I explained that he was welcome to Google about Christian's birth defect and see that it was a real condition, but again apologized for having bothered him. He kept messaging me about photoshopping photos of Christian until I finally just had to block him to stop the messages. Lesson learned there for sure! I probably won't attempt to make friends with people who make rude comments anymore, not because I don't want to; but that definitely taught me that some people just don't want to understand.


I am not naive. I have come to realize that as long as Christian is seen in social media, there will be rude comments and hateful people who can't be "won over" so to speak. I have also come to realize that I can't stop it. All I can do is control how I react. God has done a MAJOR (I'm not even sure that word is adequate) work in my life in the last 2 years on forgiveness. True forgiveness, the kind where I can think of those people who said that they wanted to rape Christian and not wish harm to them. The kind where I can see a rude comment that was just posted, and although my blood immediately starts boiling and my heart starts pounding, and I want to lash out at them, I can muster up enough of myself to say something respectful. I have learned that God doesn't expect me to only show respect to people who deserve, or to be kind only to people who are kind to me.  Don't get me wrong, it's not easy! I don't just breeze through those comments and smile and feel good about saying something polite to someone who just said "WTF is that thing?!" about a photo of Christian. It doesn't feel good at all, for the moment. But later, when I have calmed down, and I think about, I am always glad when I do react positively. And when I fail to act respectfully, and do lose my cool with someone, I always regret it later. When people bully, the point is to hurt you, knock you down, and make you feel worthless. Surely they don't expect you to just agree with them! When I react negatively and lose my cool, they have accomplished their purpose, they have won, and I feel knocked down. When I stay calm and react to that hate in a way that I know I should, I have peace about it, I don't feel defeated, and the bully has not done what they set out to do which is hurt me. So really, when you think about it, what good does retaliation do anyways? It is simply giving the bully what they are seeking. Is getting the "last word" or calling the worst name really winning?

What God has taught me, most importantly, is that one day, Christian WILL know what those people are saying about him, he WILL hear rude comments while he's out in public, and I cannot protect him from that, but I am not powerless. I can teach Christian how to handle those moments, just as I have had to handle them for the last 2 years. I can show him that getting upset won't make it better or make it stop. I can show him that what those people say has no affect on his value and self worth, and does not diminish who God has created him to be, and all the good his life has brought into this world.


So, why have I spent the last 9 paragraphs on how Christian and I have been bullied and how we react to it, when you probably figured that this post was going to be about all those people who need to stop bullying? It's because I'm convinced that bullying will never stop on a large scale, because bullying doesn't happen on a large scale. Bullying is an individual choosing to act in ignorance, using misguided or skewed information, to distort the truth in an attempt to judge, belittle, or provoke another individual. We have all witnessed it, and if we're honest, we have all probably participated in it at one time or another. We know well what it is, but the solution still eludes us.

The solution to bullying lies within each one of us, and  in my opinion, parents hold the predominate key to putting a stop to bullying altogether. When we raise our kids to know that saying mean things to or about others, even if we think they deserve it, is NOT ok, we are part of the solution. When we teach our kids to be slow to anger, and to control their emotions and use self restraint, we are part of the solution. When we use that restraint and self control ourselves, and be a living example, we are part of the solution. When we make sure that our children are included in the lives of others who are not like them, and show them how to respect those people for who they are, we are part of the solution. When we speak up when we see bullying take place, and don't just turn a blind eye, we are part of the solution.  When we stop using Facebook as an outlet to say things that we would never say to someone face to face, when we learn to live the Golden Rule, when realize that it's not all about me, when we open our hearts and minds to accept the fact that not everyone is going to believe what we believe or agree with everything we say and that it's OK, we are the solution. The solution really all boils down to one simple word: LOVE. When we choose to love others, not because they have done anything to deserve it or earn it, and not because we "have to," but because we want to be the solution, the world will change, one person at a time. Martin Luther King, Jr. said it best "I have decided to stick with love, for hate is too big a burden to bear."

All I have to say, is how can you NOT love this face? It melts my heart every time!

A Day In The Life

It was recently brought to my attention that because I'm "famous" I treat others like nothing but "fans." As long as we get help, admiraton, whatever it is we are seeking, then I don't bother with actual relationships. So, I decided to write this blog about my life. I know that anyone who follows us on Facebook has an idea of what I do on a weekly basis, but I wanted to break it down for everyone. I think it will be interesting for myself to see a breakdown, plus, I have something on my heart I want to share with you guys!

So, let's start with Sunday. We get up around 7am and begin getting ready for church. We eat breakfast, take baths, etc. etc, and leave the house by 8:45am. Church doesn't start until 10:15, but we get to church at 9, because Chris runs the sound board, so he has to be there for the band's rehersal to make sure that everything sounds right before worship services begin. To save on gas, Christian and I just ride along with him instead of going in later. Because I am there early as well, I offered to start helping place the attendance and offering cards in the backs of the chairs before service. It doesn't take long at all, but the guy that was doing it does a lot for our church, so I was happy to take one thing off of him, even if it's tiny. While Chris works with the band to get the sound right, Christian and I spend the rest of our time visiting with people and working on physical therapy. Yep, right there at church! There are some stairs leading up to the stage where the band plays and Christian LOVES listening to the band, so he crawls all the way to the stage, and those stairs are the ones he learned to climb stairs on! I showed him every week how to do it, and after a few weeks, he started doing it on his own. We also practice cruising across the rows of chairs, and walking up and down the aisles. Because the band is playing during all of this, Christian is as happy as he can and just jams out! Once per month, I also do a story time with the children's class. I prepare props and fun ways to tell the story for that week, and then get to spend that service with some really sweet kids!

So after church, we usually grab some lunch or cook something and Christian naps. When that's all said and done, it's generally around 2pm. If Christian isn't awake yet, Chris and I use that time to relax, watch TV, and just spend some time together. If Christian is up, we usually go outside if the weather is nice, and let Christian play in the yard while we clean vehicles, or do yard work, or something like that. I also do a lot of laundry on Sundays because I'm home for more than a few hours at a time. If the weather isn' nice we usually work on some project inside such as painting or cleaning up a certain room that needs it, or something like that. We usually end the evening by grabbing a quick dinner or warming up left overs and then going to my parents house to visit with them.

When we get home we do our bedtime routines and get settled for the night. Once Christian goes to bed, I try to get in some reading for school. I usually get to sleep around 11 or 11:30.

Then when Monday rolls around, we are not ready for the weekend to be over! We all get up about 6:30 or 7 and I help get Chris out the door for work, packing lunch, gathering clothes or whatever he may need for the day. He leaves about 7:45 and it's just me and C. Christian usually eats around 8am, and then I grab me a bite of breakfast or some coffee. I let Christian play in his toy area while I put up all the clothes that I washed the day before. I also run all my errands on Mondays. Today, for example, it was trip to the post office to pick up a package and to the bank to make a payment on my school loan. We ran into a good friend today who also has a visually impaired child, so we chatted for a little while with her as well. We got home and Christian played in his toy corner some more while I picked up the house from the weekend. Our love seat turns into a catch all, so I clean that off every Monday and make sure the house is tidy. If there is any laundry left, I finish it up as well. I get all the dishes washed that we didn't get to on the weekend, and I usually pick one big project to tackle, such as vacuuming under all the couch cushions, or pulling all the furniture out and vacuuming behind it, or cleaning the tub, or whatever the next big project on my list may be.

By this time, Christian is starting to get tired, so I usually give him a bath and get him settled in for his naptime. While he sleeps, I have a few options. I usually work on homework during this time, but occasionally, I will use this time to pay bills, make phone calls that can't be made when there's a toddler hollering in the background, or work on my blog, like now! :)

Once Christian gets up, it's somewhere between 1:30 and 2:30. Once he gets up, I start that night's dinner and then we go to work on physical therapy. We work on everything that I can think of that he needs to be working on, such as walking with his walker, cruising between two objects, or standing.  We usually spend about an hour and a half doing that. After that I finish up dinner and put some in a tupperware bowl for me to take for my dinner. I get my school bags together, change Christian's diaper and clothes and make sure he's fed to make sure he needs as little as possible when I leave him with his Nana and Papa. Then I change my clothes and make sure I look decent, and we head out. I drop Christian off at my parents' house and I head to school. It's about an hour to an hour and a half drive to my school, so leaving between 4:30 and 5 gives me enough cushion to make it there with a few minutes to get to the classroom and get settled in. Class gets out at 10pm, and I am usually home around 11, because traffic is lighter that late at night. During class on Mondays, I study Constitutional law and then Evidence, both of which require lots of concentration and constant note taking to make sure I do well on the tests. We get a ten minute break between classes, so I usually call and check on Christian and make sure Chris made it home from work safely.

Chris gets off work at 5 and is usually home around 5:45. If he goes to the gym after work, he gets home around 8. My mom keeps Christian either way, so Chris eats whatever dinner I've prepared and does any cleaning left on the house so I don't have to worry about it when I get home.

My mom brings Christian to my house around 7:30 or 8pm, and gets him into his pajamas and ready for bed. He usually goes to bed between 9 and 10, but occasionally it's a little bit later!  My mom usually leaves around 9 and Chris gets Christian on to sleep. When I get home, I usually just go straight to bed because I am whipped!

Tuesdays are therapy day for us. The first part of the morning is the same as Monday, we get Chris off to work and do all that, but after he leaves, we get ready to go as well. We leave the house around 9:30 and get to Special Kids around 10am for physical therapy. We go straight from PT to speech therapy at 11. Speech therapy lasts until 12 and by this time Christian is exhausted. I usually have to head straight home to get him to bed for a nap. He usually sleeps until between 1:30 and 2:30, and I use that time to study. After he gets up, we do the same thing as Mondays. We work on therapies, eat lunch, I cook dinner, and we get ready for me to go to school and Christian to go to his Nana and Papa's.

On Tuesday nights at school, the class time is the same, but my classes are Properties, and Rememedies and Restitution. Remedies is one of the harder classes I've taken, so it takes all I've got to keep up with the teacher in that class. I also work a table on Tuesday nights before class, so I have to be at school about 30 minutes earlier than usual. Basically, when I graduate, I will have to take the BAR Exam to be able to practice law. The table I work at is for a company that sells a bar review exam course. The course costs somewhere around $3,000, but if you take it, you are way more likely to pass the bar. So, I decided on my first night of school that I couldn't afford it. lol. But an opportunity arose where I could work at the table for 30 minutes once per week, and I wouldn't have to pay for the course. I could not pass up that opportunity, so that's what I do. I basically just answer questions for other students, take payments, and help people get enrolled to take the review course.

I get home around 11pm on Tuesdays as well. Christian is already asleep by this time, and I just put away my school bags and head to bed!

Wednesdays start out just the same as every other weekday. We usually have Early Intervention come by on Wednesdays, sometimes at 9, sometimes at 12. She comes for an hour and we discuss any new advancements with Christian's development, new ideas that I can be using to help Christian, or things that I may be concerned about and how we can address them. If we have to go to Vanderbilt for any appointments, I generally try to schedule them for Wednesdays because the traffic isn't as bad as Mondays or Fridays, and it's the only other day we don't have therapy.

We don't have too many appointments to Vanderbilt, so Wednesdays go pretty much just like any other weekday. I clean in the mornings, Christian gets a bath, and I study while Christian naps and then we work on therapies. I also do my coupon organizing on Wednesdays if time permits. It usually takes about an hour to clip, bind, and print my coupons for the next shopping trip, but it saves us a TON of money, so it's worth it to help make ends meet!

I don't cook on Wednesdays because instead of school, we go to a thing with our church called Lifegroup. It's where several families meet at someone's house and everyone brings one part of the meal. Chris gets home around 5:45, and then we load up the car, take the trash to the road, (because it's picked up early the next morning and we get home late), and head to Lifegroup. We get to Lifegroup around 6:30. We eat dinner, talk, and do a bible study lesson. Then we clean up, pack up, and head home. We usually get home around 9 and I already have C in his pjs. I usually get things ready for the next day, pick up anything that needs to be, and get ready for bed myself. On Wednesdays I usually let Christian lay in the bed with me and Chris before he goes to sleep. He rolls around and plays and climbs all over us and giggles before he falls asleep. I take him to his bed, and then I study until I pass out as well.

Thursdays are just like any other weekday except we have more therapy. I cook some dinner that Chris can warm up, we do some therapies before Christian's nap time, I study during C's nap, and I clean up around the house or do whatever needs to get done that day. I try to get Christian to nap early so he won't be tired for therapies. If I am successful, and we have time, I run to the grocery store before therapy and grab what I can. I do a little couponing during that time too.

Music therapy starts at 3 and lasts for 30 minutes. Music therapy is through Bolton Music Therapy, not Special Kids. So once that's over, we head straight to Special Kids for feeding therapy at 4. Feeding Therapy lasts until 4:45 or so, depending on Christian's tolerance for it that day. Now, I have to leave Woodbury no later than 5:15 to make it to school on time, so getting Christian back to Woodbury and then making it to school on time is impossible because Woodbury and Murfreesboro are about 30 minutes from each other. Even though Chris would usually get off at 5 and could meet me in Murfreesboro to pick Christian up, he works late on Thursdays, until 7, so that's not an option. I was late to the first 5 classes because of that. But a wonderful friend who lives in Murfreesboro (where C's therapies are) offered to watch him for me! So I drop Christian off with her right after therapy and head on to school.

Chris picks Christian up after he gets off work, and brings him home. I get lucky on Thursday nights with school. I only have one class, Civil Procedure. It lasts from 6:30 to 8:10, and I usually end up getting home around 9pm. My mom usually comes over to check on Christian on Thursday evenings before I get home. Christian is usually not asleep when I get home, but ocassionally he is. If he isn't, I get him to sleep. After that, I usually just study until I pass out on Thursday nights as well.

Fridays are our relax day! We don't schedule anything on Fridays unless we absolutely have to, because it's the only day we get to stay home! Our routine during the day is the same, working with C on therapy stuff, naps, lunch, homework, cleaning, etc. BUT, on Fridays I cook a more extravagant meal, because all week long I've had to cook frozen lasagna, or crockpot soups. So, I usually try to go all out on Fridays and cook something that takes a little longer but is way more yummy! I also cook a lot more because I invite my parents over on Friday evenings to eat dinner. It's a little known secret that my mom hates to cook (just kidding, she'll tell anyone how much she despises it lol.) And she is usually worn out from watching Christian so much for me through the week, so this is the least I can do for her! After they leave, we usually just spend the evening at home doing family time. Occasionally we will do something crazy, like go to the mall or to a friends house if we feel the need to get out of the house for a little while. :)

I dont' typically do homework on Friday nights after Christain goes to bed, as my reward for making it through another week! lol

Saturdays at the Buchanan home are CRAZY!!!!!!! We usually have at least one pre-arranged engagement for the day. Now, mind you, it's always something fun, such as dinner with my aunt and uncle who drive an hour to come down to see Christian and his cousins, or take Christian to the pool or the pumpkin patch. But we almost always have something planned. When we do have some free time on Saturdays, Chris and I like to get projects done that we don't have time for during the week. Just recently we decided to turn our den into our bedroom because there is more living space in the den and the den wasn't being used to it's full potential. We spent two weekends moving furniture and selling some old furniture from the den that we didn't need and cleaning and getting everything set back up. One saturday I spent 3 or 4 hours going through Christian's clothes and getting out his fall and winter stuff and putting away his summer things.

There is always one unplanned thing as well that pops up on Saturdays. A call from a friend wanting us to come do something, or a last minute plan that sounds fun!

We usually end the evening by visiting my parents again. My parents are amazing people, whom Christian and I adore. They are not elderly, but they are 54 and 63. I know they won't be around forever. Everytime I'm tired and don't feel like visiting them, I remember that. I watched my grandparents go from independent living when I was little, to moving to a nursing home and eventually passing away when I was a teenager. That was hard to experience, and I know that some day I will have to watch my parents go through that process as well. So I refuse to waste time doing unimportant things when I can be with them and let Christian be with them. Some of my fondest childhood memories include my grandparents. I loved them and still do so very much.  I don't want to deprive Christian of that sweet relationship that he could have with his grandparents. We see my parents a lot, and that's how I plan on keeping it.

If there is some down time on Saturdays, I try to do some studying there too, because what I do through the week is nowhere near enough. It usually isn't the best studying because there is usually a rowdy kid and a husband who need attention mixed in with my studying time! But I don't mind!

So we usually end our Saturdays just the same as any other. We do our bedtime routines and off to sleep we go, getting ready for Sunday!

So there you go, just wash, rinse, and repeat, and you have our basic routine for every week.

Now let me just mention all the things that I deal with pretty much weekly that I didn't mention in there because they don't fall withing a routine time.

*Insurance and the mess that it is - I've been through 2 appeals and working on a 3rd with Christian's insurance to get him into Special Kids nursing program two days a week between therapies. The insurance says that he doesn't qualify, but we know that isn't true because he was getting 54 hours a week of nursing when I was still working. I am constantly having to fight them over something that they don't want to give Christian. Social Security Disability is the same. Christian is 19 months old and has never gotten a full SSI check. In fact, I think he's probably received less than $1,000 total from SSI in his entire life. It's a constant fight with them as well to keep him on it when we know he should be.

*Nationwide Children's Hospital - I speak with someone from NCH almost weekly on Christian's next surgeries. I have spoken a lot with the actual doctors on their plan of care and exactly what the next surgeries will entail. I have been back and forth with the financial department trying to make the financial aspect of it work out. I also get a lot of mail from them that all hospitals send out after you have appointments. Exam synopses, or letters from the doctor explaining their findings, etc. That doesn't include the entire week we took to actually fly out and visit.

*Other medical issues - I have to speak with Christian's medical supply company regularly, and keep up with what he is getting low on and when. We have a box of medical supplies delivered to the house once a month. We still go to Vanderbilt for several specialites, such as gastro for him Mic-Key button. I have to keep up with paperwork, appointments, doctors, procedures, etc from there. Christian's other medical issues require lots of time and paperwork!

*All things vision - Everything we do with Christian has to take into consideration his vision impairment. I don't just change his clothes. I tell him what I'm doing, I encourage him to help me by pushing his arms through the sleeves. We discuss his dirty diaper and giggle because it's shewy. I ask him questions. I take his hands and show him how to brush his hair. I make him lift his arms before I pick him up. I encourage him to use words to tell me what he wants. We talk about where we're going when we're in the car. We sing songs to pass the time he's stuck in a car seat because he can't look out the window and be entertained. It's constant. It's second nature to me now, but it's never not going on. I use every single opportunity I can to teach Christian something about whatever it is we're doing. Because he can't watch me and learn. He has to touch and hear about it.

*Friends - My friends that are not FB exclusive,and who were here before FB, still like to be friends with me. lol. Although I don't get to see or talk to any of them as much as I'd like, I do try take some time for them. One of my best friends is getting married in 2 weeks. We've been on the phone a lot lately discussing wedding plans, and ordering my bridesmaid dress, and deciding where to have the bridal shower. Another really good friend is having a baby is a few months. I've been buying for her little girl, and checking on her a lot. I have another firiend who has a little boy with a vision impairment. We talk often about developmental progress, resources, swapping ideas, National Federation for the Blind, and what it's like to be the mama to a child who is blind. She is so awesome to talk to. There are way more, but these are just some examples.

*Facebook - Christian's fan page has somewhere around 34,500 fans, and my facebook profile has 5,000 friends and around 12,500 subscribers. That's over 50,000 people to one me. I have somewhere around 1300 unread messages on the fan page right now because I just can't get to them. I get around 20 messages per day on my personal FB profile. I answer messages and posts while Christian is in therapy, while waiting in line at the grocery store, in class when the teacher is on a topic that isn't important for taking notes, while I eat lunch, while I'm rocking Christian at night, before I fall asleep at night. That's literally when I get a chance to do those things, as you can see from my post above.

*Marriage - Some of you may know that my marriage has struggled since Christian was born. The weight of a special needs child is hard on a marriage. The divorce rate of parents of special needs kids is 80%. That's 20% above the already ridiculously high national average. Chris and I have recognized our struggles, and are working toward meaningful changes that will help our relationship and our whole family. It takes time, and effort, and prioritizing. We make it a point to purposefully work on our relatioship daily. And sometimes that means putting down the phone and just being present with each other.

*E-mails and speaking engagements - Because of Christian's popularity, I do speaking engagements and interviews often. One week last month, I spoke 3 seperate times. It is time consuming to write, perfect, and practice speeches. I want them to be good. I also still do a lot of interviews. Many are now by phone or e-mail, but still take time to sit down and answer. I had someone come to my house this past Saturday for 3 hours just to ask questions and shadow us. I get some sort of fan or interview email at least once per day. Finding the time to respond to all of these is hard.


And finally, I want to end with this. This is for everyone who has come to know us since that video went viral in May, everyone who has sent us gifts, kind messages, donations, love, and friendship. I realize that I am not good at responding to messages or posts, or emails. I realize that sometimes you may send me a long message and my response is one or two sentences, or you may post on my wall and I only "like" the post and not comment. I also realize that I rarely reach out to you guys unless you reach out to me first. And sometimes, I never do get to respond to you. But I want you guys to know that I think about you all daily. I think about all the people who love Christian so much and who can't wait to hear how he's doing. I think about you guys when I put on a shirt that one of you bought him, or when we talk about a state where "hey, so and so lives there!"Or when Christian is playing with a toy that someone sent, it makes me think of them! I never stop thinking about all the amazing people who take their time to send us well wishes and love, who take their hard earned money to send Christian gifts, who are ready to defend my son no matter what against anyone who wants to be mean!

The fact that I can't respond to everyone well bothers me immensely! I wish I had the time to answer everyone and respond to everything! To express my gratitude adequately!

 My life would not the be same if you were not all in it, and neither would Christian's. I cannot wait until he's old enough to understand. I am going to explain to him all about the people all over the world who love him. I can't wait to read him some of the sweet messages you have sent, or let him open a package he got in the mail and explain to him that you all love him just because he is Christian!!!!The fact is, I will simply never be able to express my appreciate to each and every one of you adequately. But none the less, I want you all to know how very sincerely I love each and everyone one of you.

Ohio, Nationwide Children's Hospital, and Shriner's

For those of you who have been following our story for some time, you are probably very familiar with my distaste for Vanderbilt Children's Hospital; and for those of you who are not, you can go back down this blog a little ways and read some of the horror stories about our experiences there.

I was convinced back last year sometime that I could not take Christian back to Vanderbilt, at least not to the plastic surgery department, and I'll explain that in a minute. We still see gastroenterology there, because hey, how can you mess up replacing a Mic-Key button? We still see the Neonatal Follow-up Clinic because they are really nice, knowledgeable, and willing to help get Christian services when he needs them. But as far as plastic surgery goes - No way, Jose'! You can't make me take him back, I won't do, I refuse, NUH-UH! So let me explain why.

Back last year when Christian was about 4 months old, we visited plastics for a follow up to a CT Scan. The scan was just to double check a surgery closure from his surgery the previous month and ensure that it wasn't infected under the skin next to his absent skull (I don't think I even have to explain why that sounds dangerous). So when we went to the doctor to hear the results of the CT, the doctor begins to tell me that Christian has Craniosynotosis, a fairly rare birth defect that has NOTHING to do with his very rare cleft (red flag number 1- what are the chances he has two totally unrelated and very rare birth defects? Should I be playing the lottery?) and that we needed to do  surgery or his head would begin to grow funny (red flag number 2 - shouldn't his head be growing funny now if he already has it?) AND we had to do the surgery in the next three months or Christian would have brain damage (red flag number 3 - so in the next 3 months he's going to go from a perfectly cognitively functioning infant to brain damaged?). He then begin to explain that the procedure to correct this included cutting open Christian's skull from ear to ear, moving the skull to where it should be, and reattaching it with metal screws and wires, some of which he would have for the rest of his life. A neurosurgeon would be joining in the operation because this was a neurosurgery (red flag number 4 - shouldn't we have a neurosurgeon look at Christian before we actually do the surgery?). He said we would wait a few more months and check it again, because he wasn't completely sure. So we went back 2 or 3 months later. The doctor walked him, pulled up the old CT scans from a few months ago, gave them a 20 second look over, walked over to Christian and ran his hands over Christian's head for about 10 seconds and said "Yeah, he definitely has craniosynotosis. He needs the surgery. (Red flag number 5 - What's changed in the last 2/3 months? Nothing. He looked at the exact same CT scan.)

So I told him that I wanted to wait, and left it at that. I immediately began calling other places outside of the Vanderbilt network to get a second opinion. The only place I had any luck with was UT Medical Group in Memphis, Tennessee. They host a monthly craniofacial clinic that is free for families. A group of doctors give free consults for these little patients. I was so thrilled to have found this! Memphis was only a 3 or 4 hour drive, so we did it gladly. The panel of 5 doctors looked at Christian's CT scans, gave him an exam, and asked lots of questions. They all agreed that Christian does NOT have craniosynotosis. They also told me that they know the doctor we were seeing at Vanderbilt, and they had no idea why he would make such a diagnosis. Regardless, there was no way they would allow Christian to undergo craniosynotosis surgery, and I was not about to let him either!

I was so so so relieved! I came out of that office dancing, literally! I called everyone who cared to let them know! When we brought that information back to the doctor at Vanderbilt, he refused to back down off of his diagnosis, or even pull in another doctor for an opinion, and so we were back where we started.

Have I mentioned yet why this surgery is such a big deal? The surgery involves making an incision from one ear to the other, opening up the skull, moving it to where it should be and reattaching it with metal screws and wires, some of which will dissolve, and some that will stay in the skull for the remainder of the person's life. Around 8 hours in surgery, and up to a week or more in the hospital. This is serious. You may know Delilah, one of Christian's partners in crime from Facebook. She has undergone craniosynotosis, and so has her mom. And they will also tell you, it's no joke.

Yeah. This was a big deal. So there I was. Stuck. Do I go ahead and let him have the surgery even though I'm not sure, and risk having him undergo it unnecessarily, or do I hold off and risk him actually having it and causing brain damage? I was sick for months trying to make this decision. In the meantime, I didn't go back to the doctor at Vanderbilt. I didn't really have a plan, but I knew that for the moment, I couldn't take Christian back there.

So I say all that to say that I was actively looking for a hospital to take Christian to for his surgeries.

Amazingly, an opportunity came open that we could NOT pass up. A wonderful lady by the name of Julie Thomas called me one evening and began telling me about the amazing children's hospital in her backyard in Columbus, Ohio. Over the course of a few phone conversations, Julie asked if we would be willing to come to Nationwide Children's Hospital (NCH) for some consults. I was thrilled at the opportunity in itself, but it gets better. Julie worked her tail off to get us plane tickets, paid for. She offered us her entire upstairs of her home to stay at during our visit, so that saved us hotel fees. She drove us all over creation, well all over Ohio anyways, during our stay, so we didn't have to rent a car. And there's more! She helped us file paperwork with the hospital to get financial help with the consult fees at NCH. And there's still more! Julie and her co-workers raised enough money PLUS got a foundation to match their fundraiser, to pay for whatever the hospital didn't take off of our bill. Did I mention that Julie is AWESOME!!!!

So we flew into Ohio on a Saturday afternoon. We were met at the airport by a welcoming crew, complete with cheering and signage that read "Christian's crew!" We were then escorted to a restaurant called Bucca de Beppo, where we ate waaaaaay to much, and got acquainted with many of the people who had been so involved in getting us to Ohio. Lunch was great, and then we went back to Julie's house to relax after the flight. Christian made himself right at home with Julie's 15 month old son, Jax, and all his fun toys! They would both get on riding toys and ride all around the living room, giggling and playing their hearts out.

This was dessert at Bucca de Beppo. Oh wait, I was suppose to share with the table? Whoops! 

On Sunday, we visited Julie's church, which was our first experience at a Catholic church. During one part of the service, I had missed what was being said (Probably because Christian was yelling in my ear). Everyone stood and started shaking hands. (This is also done at my church, known as fellowship time, where you just greet each other.) But apparently, we were suppose to be saying "Peace be with you" to each other. So someone stuck out a hand to me, and sure enough, I grabbed it and said "How are you?" She gave me an odd look and said "Peace be with you." Whoops! haha!

Sunday was also a leisure day. Julie trusted us with her Cadillac and let us drive to the Tuttle mall. Chris and I shopped for a while, but it was so crowded that we mostly just dodged people with the stroller! I did find Christian an awesome Superman shirt, complete with cape, at Baby Gap. Julie also set up time for us to go to one of her co-worker's house to take Christian swimming. They had a beautiful in ground pool that they so graciously opened up to us. Thank you Karen and Wayne! Christian had a blast! He swam until he just gave out! We spent the rest of that day relaxing at home.

Having fun at the Tuttle mall

Monday was our first appointment day. We went to NCH and saw neurosurgery, urology, and genetics that day. Genetics didn't have to do any new genetic testing, but looked at the workups Vanderbilt had done when C was born. The lady we spoke with was older, and I say that only to emphasis that she was so so smart and you could tell she spoke from experience! She really knew her stuff. She gave us our first ever real diagnosis for what actually caused Christian's birth defect. Christian's genetic testing is clean, so she explained that she was very confident that Christian's condition was caused by Amniotic Band Syndrome. You can Google that if you want, but I will tell you the only important thing about that: Our chances of having another child with amniotic band syndrome are slim to none! That was a huge relief to us! After 18 months, it was so nice to finally have a diagnosis!

Urology was a very quick and simple appointment, so I won't go into details about that. Basically, Christian has a very minor hypospadias which will have to be fixed surgically. It will be a very quick and simple procedure,but needs to be done.

Anywho, the big story for Monday: Neurosurgery!!!! This was the appointment that made me nervous because we were getting our 3rd opinion on whether or not Christian has craniosynotosis. This was the tie-breaking decision. I decided if this doctor agreed with Vanderbilt, then I would allow Christian to have the surgery. So we went into this appointment with CT Scans in tow. The doctor was SOOOOO friendly and relatable! He chatted about his kids, he smiled constantly, and even made a few jokes. THAT, my friends, is the type of doctor I want working on my child! The fact that he had kids made me so happy, because I knew he could understand my plight as a parent. So, we got down to business, and I told him the whole history of Christian's craniosynotosis diagnosis. Then I began pointing out sutures in the CT and discussing comparable sutures and head shapes in actual craniosynotosis patients, discussing Christian's head growth chart, and everything I knew to tell him about Christian's diagnosis. His first reaction before answering our question was "What do you do for a living?" I smiled and said "I'm a law student." He laughed and said something to the affect of thinking I was in med school because I knew what I was talking about. He found out quick that this mama bear doesn't play when it comes to my cub! :)

Then he gave us the news! He concluded that Christian DOES NOT have craniosynotosis!! That was the news we'd been praying for!!! As we walked out of that doctors office, happy as we could be, I grabbed a brochure because the front caught my eye. It said "When it's your child, no surgery is routine." It reminded me of the day I took Christian in for his pre-op appointment at Vandy before his big surgery when he was 3 months old. He was still 2 months old at this time, and the doctor could tell I was stressed. I was asking a lot of questions, and he looked me right in the eye and said "I don't know why you are so stressed out. This is just a simple surgery." I couldn't even believe he said it, but the first words out of my mouth were "He's my 2 month old son! It doesn't matter how simple the surgery is!" (Or something to that affect.)

After that, we made the LONG trek to Cincinnati to check out Shriner's hospital there. We met with Dr. Pan, who we found out very quickly, was a VERY skilled surgeon! He showed us some before and after pictures of another patient he has operated on who had a Tessier cleft. In three surgeries, he had turned that little girl into picture perfect with only 2 small scars!!!! She looked amazing! Our jaws were just hanging while we looked at the photos. We discussed concerns with Dr. Pan and what he thought would be a proper way to go about closing Christians palate, and repairing his lips.

We left there feeling great as well. Shriner's was full of friendly faces and people who doted all over Christian. We made it home in time to order some take out and go to bed that night! We were all exhausted! And Julie was probably the most worn out because she drove the whole way there and back!!!

Tuesday was also full of appointments. Although I don't think any of us were adequately rested, we got up and got ready to meet with Nationwide Children's Craniofacial team! We were so excited for this appointment because craniofacial will be the majority of the Christian's surgeries in his life time. We sat in an exam room, and had several groups come to us to take a look at Christian. He had a dental exam, and a few Ohio State students came to look at his pearly whites, too. When the craniofacial doctors came in, we started asking questions and doing all that normal stuff. They examined Christian and I was so impressed! They were so gentle with him when they were moving his head around, never being forceful. They talked to him and to us with so much respect, and told us that they didn't want to give us any answers just yet. They took some pictures of C, and took his CT Scans, and asked if we could give them some time to come up with a plan of care because Christian's case is so unique. We are more than happy to oblige.We left that day feeling great as well. We were very impressed with the craniofacial team and couldn't wait to hear what they had to say!

Skyline Chili! Had to try it! 

We spent Tuesday evening eating a home cooked (and delicious) meal with one of Julie's many amazing co-workers! Melanie and her girls brought us dinner just because they are SOOOO sweet! (Melanie's husband was sick and stayed home.) We passed out early that night as well, still trying to recoup from the day before!

When Wednesday rolled around, it was the day we were heading home. We got up early and made a quick stop to the hospital's dental hygiene clinic to get Christian's teeth brushed. Then, we hopped on over to a fire station where a sweet lady's  husband happened to work. Sonya had sent me a message a few days prior inviting us to the fire house for a visit, so we took Christian over to explore the fire house and have some pictures taken with them! Boy, is he ever a little boy! He LOVED the fire trucks! He stood on the front bumper and held onto the grill, feeling all over the front of the fire truck. Chris took him inside the cab and let him play with the steering wheel. They cranked the horn a few times, the second one was a little loud and scared him. :) But man did he have fun! He even got a little fire hat that he worn during our visit!

We also took Christian to the Columbus zoo. This wasn't in our original plans because we thought "We're not taking our blind child to a zoo full of animals he can't look at." Right? But Sonya gave us tickets! So we did some research and found out that they had a sting ray exhibit where you could pet the sting rays! So we were game! Christian LOVED petting the sting rays. I was terrified and kept jerking his hand out of the water when a big one would swim by! They would get close to him and splash that salt water in his face, and Christian would just smile! He didn't care at all! And when we finally got done, he tried licking the salt off of his hands! YUCK!
Here's the link to the video of Christian petting the sting rays! http://www.youtube.com/watch?v=rkqNnlLa6cc

We went straight from the zoo to the airport that day and said some tearful goodbyes to our family away from home! Jax was passed out so he didn't mind seeing us leave, but Julie and I were both sad! We definitely left a piece of our hearts in Columbus that day! And although I hate the circumstances that will bring us back, I will be so excited to see everyone!

So now we are waiting. The doctors called us back about a week later and told us that they were diligently working on a plan for Christian, but because his case is so unique, they wanted to call in some other professionals. Specifically, they called an associate and friend from California who has been treating severe clefts for many years (in fact, they said he's about to retire) to get his opinion. They sent the doctor photos and CT Scans to get his opinion as well. I was SOOOOO  impressed with that (as it was the total opposite of what we got at Vandy, where 1 doctor wouldn't even pull in another specialist in a different field if the need arose). After another week or so, they called us back and gave us a detailed plan to finish Christian's lip repair. I won't go into very specific detail here, but their plan was amazing, and they are confident that they can be finished in two surgeries, PLUS get his soft palate closed as well. Of course, he will need more surgery to close his hard palate, and later down the road, they will want to go back in and put bone in place where it is missing, but for now, this is what they are talking about doing.

So we are waiting to hear from the surgery scheduling people, and the financial department. They filed our bills with Christian's insurance, so we will find out if they are going to cover any of the costs. We also applied for financial assistance to see if they would knock some of the bill off based on our income. We haven't heard back from either yet. I am ready and eager to hear from them because I want to get these surgeries done, but at the same time, in some way, I am not in a hurry because I am pretty scared of surgery!

When more information is available I will be sure to share it with you guys, but for now, that's our trip to Ohio and the great things that came out of it!!! Hope you all enjoy! And thank you Julie and her family, Melanie and her family, and all the amazing people we met while in Ohio! O-H!!!!

New Hospital

We have recently been looking into some different hospitals for Christian so I thought I would update everyone and let y'all know what is going on!

As many of you know, we had had tons of bad experiences with Vanderbilt Children's Hospital, from a broken leg, to doctors who didn't show up for appointments, to 3 to 4 hour waits for simple follow ups, to busted mouths, to incorrect diagnoses and prescriptions, just to name a few.

One of the major things that happened that really pushed me to start looking for a new hospital began when Christian was about 4 months old. He had his cleft lip repair surgery when he was 3 months old, and on one of the incisions, it looked like he might have had an infection under the skin. This was on the part of his head where the skull is missing, next to his right eye, so I was concerned that it was so close to his brain. We took Christian to the ER on Saturday evening and were there until around 3am. The doctors who saw us told us that it didn't look like an infection to them, but that I needed to follow up with his plastic surgeon just to be sure. The plastic surgeon wanted to do a CT just to be sure, because we needed to know FOR SURE if there was an infection there. So we went back for a CT scan a few weeks later. Vanderbilt never called to let me know the results, so I began calling and e-mailing as soon as I knew the results would be in. They were pretty rude about me asking to know the results of the CT, but I persisted. The receptionist finally told me that there wasn't an infection, but that the doctor was concerned about fusion of the skull so we needed to come back in.

We went back in a few weeks later and the plastic surgeon informed us that on the CT it looked like some of the plates in Christians skull, namely those next to the absent skull, were closing too early, a condition known as craniosynostosis. He said that when the plates fused too early, they caused introcranial pressure that can cause brain damage if left untreated. Eventually Christian's skull would start growing in a funny shape. The treatment would be a 7 to 9 hour surgery where the plastic surgeon and a neurosurgeon would cut open Christian's skull, remove a piece from his ear to the top of his head, to his eye socket, and reattach it with metal screws and wires.

I literally almost fainted. Christian's nurse ran over and grabbed Christian out of my arms and the doctor jumped up to grab me as I was falling backwards. He asked if I was ok, and for a minute I couldn't even speak. I finally started asking some questions, but wasn't really sure what to say. The doctor then told me that he wasn't sure just yet that this is craniosynostosis and he just wanted to keep an eye on it for now. He also explained to me that craniosynotosis is a fairly rare birth defect that was unrelated to Christian's cleft. Immediate red flags started flying in my head. I just could not believe that Christian had a birth defect that only 50 people in the world had AND another non-related birth defect that was also fairly rare.

I started doing my own research on the matter and found out that one way that doctors find and diagnose Craniosynotosis is to look at a growth chart of the child's skull over time. If it wasn't growing, or not growing on the normal curve, that indicated craniosyntosis. I called Christian's pediatrician and asked for a copy of his head growth chart. At every well baby visit they had measured his head and I knew that it had always measured normally. Sure enough, when I got the paper, Christian's head growth was perfectly normal. Another red flag

Two months later, we went back to the plastic surgeon to check on the craniosynostosis thing. The doctor walked in the room, glanced at the CT scan we had done 2 months ago, ran his hand across Christian's head and in less then 2 minutes in the exam room, he says "Yes, it's craniosynotosis. We're going to have to do the surgery." He began to tell me where to go to schedule the surgery after I left the exam room. Again, I was stammering and stuttering, but not so close to passing out this time. I told the doctor that I needed more time to think things over. He agreed, but warned me that this surgery had to be done by the time Christian was a year old. He also never asked for Christian's head growth chart, and I didn't offer it to him because I wanted to test him and see what he would do. By this time, there were so many things that just didn't add up, that I knew I couldn't let Christian have the surgery until I knew more.

I immediately started looking for a doctor outside of the Vanderbilt network to get a second opinion. I finally found a group of doctors at UT Medical Group in Memphis, Tennessee who hold a craniofacial clinic once a month. We were placed on the schedule for the October Clinic to get a second opinion.

Christian was a trooper on the 3 1/2 hour car ride. We only stopped once to feed him and grab us some breakfast, and he never complained the whole way. When we finally got there, we were some of the first people to be called back. A group of doctors (5 if I remember correctly) came in, looked over Christian's medical records, took pictures of him, asked us a lot of questions, and made a determination that Christian did not have craniosynotosis and said that "Under no circumstances would I suggest that you allow him to have the surgery." The doctors also said that they knew Christian's plastic surgeon at Vanderbilt, and that they had no idea why he would diagnose Christian with this birth defect.

That day felt like a 5,000 pound load lifted off my shoulders! I had been so worried and scared that Christian was going to have to endure such a painful and residual surgery for the last 3 or 4 months. It felt amazing to have that worry lifted.

But, that visit created a new problem. We went back to the plastic surgeon at Vanderbilt and told him what we had found out, and although he said that he disagreed with the UT Medical Group findings, he didn't push the craniosynotosis surgery any further. This left me with a deep mistrust for that doctor. He had always been one of the nicer doctors that we visited at Vandy, and he had done a miracle with Christian in his lip repair surgery, but still, my gut was telling me that I could not let this doctor work on Christian anymore.

So, that's just some more insight into the deep mistrust and dislike I have for Vanderbilt Children's hospital. I learned fast as a mother to trust my instinct when it came to Christian. When orthopedics broke Christian's leg, I argued with them for an entire appointment about it. They assured me that his leg was not broken, but I didn't let it go until they did an X-Ray. Low and behold, Christian had a fracture in his tibia near his knee.

So, now, I have spent the last 6 months researching and setting up consultation appointments with new hospitals, all out of state, to try to find Christian the absolute best care possible, with doctors who will treat him as if he is their own child when he is under anesthesia and the knife. Christian is still facing 20, 30, maybe even 40 or 50 surgeries in his lifetime, and I want a doctor who is going to do the VERY BEST job possible with absolutely nothing being done unnecessarily and no mistakes being made. Christian can't afford unnecessary surgery or mistakes, and he definitely doesn't deserve it.

Right now, we are looking into two hospitals in Ohio, Shriner's and Nationwide Children's Hospital. We have consultation appointments scheduled for August 27th and 28th as of right now. This is about a 7 to 9 hour drive. We have also begun looking into Milton Hershey in Pennsylvania, although I haven't yet contacted anyone there. I am researching and looking into every possibility for which hospital to go to.

My criteria are simple and I don't think Christian deserves any less. I want doctors who care about my son, and don't see him as just another surgery, another day on the job., who are extremely skilled in their profession. Who take the time to listen to me and take into consideration my feelings on procedures and Christian's care. I want a hospital I can trust to do what is best for my son and my family, and who doesn't make a stressful and painful situation worse or use Christian as a Guinea pig or a paycheck.


Although Christian's insurance covers almost everything that we have done in Tennessee, it covers zero out of state medical costs. But there is no way that I will sacrifice the best care possible for Christian, no matter what it costs us. Where ever we choose to move Christian's care, his insurance is not going to cover any of it. But that is not even a consideration in this. What matters most is Christian and getting him the absolute best care possible.

Photo of a child with the type of craniosynotosis that Christian's doctor said he had. The doctor said that Christian's forehead would eventually begin jutting out like this.

This is Christian at 3 months old, days after his cleft lip repair.  I cannot imagine putting him through this unnecessarily. 

I hope you guys enjoyed this post and that it let you into a little more into our lives! I have added a photo of a child with craniosynotosis  (above) just so you can have an idea of what I've been talking about. I just got the image from Google.

Christian's bio in short - had to write this for something else and wanted to post it here!

Christian is a happy little boy who loves life. His favorite things are his Mama, his Nana, swimming, and music. He loves playing musical instruments, especially piano, guitar and drums, although as of yet he is still learning melody! :)

Christian was born with a birth defect called Tessier cleft lip and palate. This birth defect has only about 50 documented cases in the world. Christian's classification of Tessier cleft caused his eyes to cleft as well as his mouth, which means that he is blind.

Christian has had 3 surgeries so far and faces dozens more to repair his cleft. He has defeated all the odds and defied what doctors have said over and over. We were told that Christian wouldn't live once he was born. Not only did he live, he is a thriving and healthy little boy. We were told that Christian would be mentally impaired as well. Christian has proven to be smarter than many kids his age who have sight. Christian has never let his disability define who he is, or allow it to hold him back!

Our journey has not been an easy one, but it's definitely been worth every minute and every step we've taken. It's been hard dealing with people's reactions to Christian's appearance. We've had people stare or make rude comments to us about the way he looks many, many times. But recently, I posted a video to YouTube about our journey and how amazing Christian is, and the response has been amazing! Around 11 million people have watched the video and Christian's life has changed lives all over the world. Thousands of people have contacted me to let me know how Christian has touched them and helped them in some way.

I know that Christian is fearfully and wonderfully made, and that God's plans for him are so good! I am so proud of Christian for everything he has accomplished in his short life, and I can't wait to see all God has in store for him!