Christian Taylor Buchanan

Christian Taylor Buchanan

Friday, May 25, 2012

Surgery, Hospitals, and All That Yucky Medical Stuff

I love writing in my blog, and even more I love that people are reading about my family and enjoying and being inspired! Someone asked me to elaborate on Christian's surgeries, which  led into me realizing that a lot of people don't know much about Christian's actual condition. "Cleft lip and palate" isn't really an accurate word to describe it after all. So I would like to explain all this as best I can in hopes that you guys can understand just what's going on inside that crazy little fella, and even more so, how blessed we are.
So let's talk about the vision impairment first because I've already talked about it in my last post, but there are still a few questions. Christian's condition is known as "micropthalmia" and was caused by his cleft. I won't go into all the details because you can read them in my last post, but what I didn't mention in my last post was a treatment. What doctors have told us is that there is no "cure" for micropthalmia. There is also no such thing as an eye transplant, etc. I'm not quite sure I believe that to the extent they explained, though. His eyes require very little extra care as well. They do get cruddy some days (as I call it) and I have to use a wet clothe to wipe them clean every morning. We keep prescription antibiotic ointment to use in his eyes if needed, but I have only used it 3 or 4 times ever. The doctor said to use it sparingly because he could become resistant to it. Christian also isn't bad about rubbing or scratching his eyes. When he was little, he was horrible about it. He wore little mittens until he was 4 months old because he constantly made his eyes bleed from scratching them. But as he got older, I would let him rub them and just kind of help him so he learned how to rub them if they itched without hurting them. He's a pro at it now. :)

Christian's cleft is the biggest problem that he has. The roof of his mouth is just wide open, as we're his lips until he had a surgery, which I will discuss in a minute. He will have many surgeries to close that up. We are talking dozens, 30, 40, 50 maybe. I'm hoping it's the lower end of that spectrum but I have clue as of yet. He will also require dental work, as his midline of his top teeth is shifted to the left a little. He is also missing his jaw teeth in top. His bottom jaw and teeth are unaffected by the cleft. His uvula is split in half (you can see it in some of his pictures where is mouth is wide open) but I'm not sure what/ if they will do anything for that. His maxillary ridge, the ridge in the roof of his mouth, is split in half and sits in either side of his mouth near his cheeks. The cleft palate will be closed up over a slow process of surgeries that will eventually require taking bone from other parts of his body and placing it in his mouth where bone is missing. That is really all I know about that as of now because we just haven't gotten to that point yet. We have no idea why or how his birth defect happened. We had genetic testing done on him when he was tiny, but it all came back very normal.

Everything else: Several people have asked about the casts they saw in some of my pictures. Christian was born with a clubbed right foot. He had a heel cord lengthening at 3 months old, where they just went in and cut his heel cord and then casted his foot so that as the heel cord healed, it would heal in the position it needed to be in. His club foot is very very minor and doctors think it is caused by the position he was in while in the womb. The blue cast you see in pictures is the one he got after surgery. Before that, we had a series of casts, a new one each week, to attempt to position his foot correctly. The doctor we used was a joke so I see no difference between his foot now and when he was first born. But we went through some pure heck on earth over this. I will leave it for another post. Anyways, the only thing we do now for Christian's club foot is that he wears an ankle-foot brace. It goes inside a fitted shoe and holds his foot in place during the day. He also has a different one that he wears at night. It is a little bigger and pushes his foot farther. He wears these a total of 14 to 16 hours a day, and has been for about 2 or 3 months if not longer. I can't tell that they have done very much to help him, but for now my research is inconclusive on that matter so we just wear them :)

Christian also has a g-tube, which is basically a tube that connects the outside world to the inside of his belly. When he was born, his cleft was so big that he couldn't take a bottle, so he was given a g-tube so he could eat. It is a very simple device that just lets me pour milk directly into his belly. You will probably notice it in some of his pictures. It is called a Mic-key button, or Mini button depending on which one you get. Christian has a mini, but that is a little girlie, so we still call it a Mic-key. Lol. It doesn't hurt (anymore) and he actually likes to play with it. I have popped his hand many times for trying to pull that thing out. lol

Intellect: Doctors have questioned Christian's mental capacity since before he was born. One side of his brain is larger than the other, and doctors told me that he would probably be mentally handicapped. Christian has proven doctors wrong again. He has proven time and time again just how smart he is. He learns things at an amazing speed considering he can't use sight to learn them. He is behind developmentally in some areas because of his vision impairment. He just turned 15 months old, and he is just now starting to crawl. He can pull to stand and is starting to cruise furniture as well. He is definitely behind, but more importantly, he is making leaps and bounds in his progress. Measuring him with other children who are also visually impaired, he is right on track, if not ahead. He has a 12 to 15 word vocabulary, and talks pretty much non stop.

Therapies: Therapy is just a necessity with Christian, but I am so glad that we do it. It helps him so much and teaches me how to help Christian do the best that he can and learn all he can. He goes to

Feeding therapy once a week to learn how to eat. Because he has a g-tube, he has never eaten by mouth, so he doesn't know how. Feeding therapy is just that. It helps Christian learn how to eat. It is a slow slow slow process that takes lots of patence. It is surprising how much goes into eating that we don't even realize. We just take for granted, drinking, chewing, etc. But it takes a lot to teach Christian all these skills he needs to be able to eat. Eventully he will have the g-tube removed and will eat just like anyone else.

Physical therapy once a week helps Christian learn to do all those things that we consider developmental milestones for kids. Through physical therapy, Christian has learned to sit up, stand, pull to stand, crawl, etc. Right now, we are working on cruising, perfecting crawling, pulling to stand correctly, and those kinds of things. Christian almost always meets and exceeds his physical therapy goals every 2 months.

Speech therapy is also once a week. Most cleft kids have to take speech therapy, I was told, because they have to learn how to talk without the sound coming through their nose because of the opening in the roof of their mouth. Christian's speech is complicated a lot more than that by the shape of his mouth and his cleft, so he has speech therapy not just to teach him how to talk, but to teach him to overcome the obstacles of his cleft in learning to speak. Like I said earlier, Christian has about a 12 to 15 word vocabulary, so he is doing great in that area. Not every word comes out sounding perfect, for example "sock" comes out more like "ock" and sometimes "mama" comes out "nana," but I am so proud of Christian for how well he is doing in this area. It just seems to come natural to him.

Music therapy is one of those we opt to do. It is not covered by his insurance so we just pay for this one, but it is so so worth it! Christian is a true music lover! This therapy used music to reach non musical goals. Since he started music therapy, he has begun accelling in all his other therapies at a faster rate. Since Christian has so many things he has to do that aren't so fun, we wanted him to do this one as something he enjoys, and he loves it! Basically Christian's therapist sings songs and plays different instruments with Christian and helps him experience them all!

Surgeries:
Oh surgery, the bain of my existance. I hate the word surgery. The thought of surgery. I even hate germ-x brand hand sanitizer because it smells like Christian's room at Vanderbilt after he as a surgery. Christian's first surgery was on February 22nd, 2011. He had his g-tube inserted and a place on the side of his head called a cutis aplasia closed up. It was a place where skull didn't form, so there was nothing there but brain and then teh covering over it called the dura. This was one of those things that we didn't know about until he was born, but it has little to no affect on Christian. We have to treat the place like a soft spot on his skull. I'm sure it will eventually have bone added in, but his plastic surgeon says that will be down the road because there is a chance that it will close a little on its own as Christian grows. Christian was already in the NICU when this surgery was done, so it added about 3 extra weeks to our stay at Vanderbilt. Christian finally came home on March 15th, 2011.

His second surgery was on May 23rd, 2011. This was a huge surgery. Christian had his cleft lip closed up as you can see from pictures. doctors broke the bone in Christian's nose and pushed his nose back so that they could sew the skin together to form lips. They also sewed up his right eyelid a little but to close it up slightly. This was such a horrible surgery for me, because it was the first big one, and I didn't really know what to expect. Christian hurt pretty much constantly the whole time we were in the hospital, and I was very alone and scared. My mom and dad were there the day of surgery, and my mom came and visited once during the week, and I had other visitors here and there, but mostly it was me and Christian in that hospital room by ourselves, except for the nurses. We spent 5 days in the hospital after that surgery and I was never so glad to be home. Christian came home on Memorial Day weekend.

His third surgery was on April 23rd, 2012. This was a very simple procedure to place ear tubes and do a hearing test. Of course, we didnt' get out that easy because that's just what Vanderbilt does. His whole procedure lasted about an hour, but we were there for about 8 hours, Christian had a huge bruise where they tried to IV him and missed, and they busted his mouth while taking out the mouth piece before he woke up from anesthesia. His surgery was scheduled for somewhere around 10:45 but he didnt' actually get taken back to surgery until around 1:30. It was just a very unpleasant experience as usual.

Future surgeries: Christian has many many surgeries in his future. Most of them will consist of repairing his palate. Doctors talk about giving him prostetic eyes, doing surgeries to reshape his orbits, eyelids, etc. But I am not sure about those yet. My reasoning is this: If I can spare Christian 10 surgeries and the consequence is that he doesn't look "perfect" them I am better than ok with that. If he gets older and decides that he wants to undergo the surgeries and make himself look as normal as possible, then I will support him 100%, but until that time, I lean toward sparing him surgery versus looking normal. I already think he's beautiful. :)
Also, I am weary of removing what eyes he has because he does have some vision, albeit very minimal. Who am I to decide if that little bit of vision is important to him or not? And also, I wonder if some day in the future, technology might exist that could give Christian sight, but I have had removed the one compenent that is needed, such as an optic nerve, etc. It is a decision I am stil considering but I just wanted to tell you where I stand on that.
We go to Vanderbilt on July 23rd for his next consult for a palate surgery, although I am looking into some other hospitals to move his care to, for so many reasons.

And I would also like to answer some specific questions as well that people have asked! So here goes!!!!!

*I do plan on having more children! If I have my say, lots more. I am not afraid that another child might have the same problems as Christian, because if they do, I know I can handle it. I actually hope to eventually adopt children with craniofacial birth defects and see that they get all the operations and care that they need to grow into successful adults!

*Vanderbilt has given me the least amount of information possible on what to expect as far as Christian's future. They really only tell me about the very next surgery, so I definitely don't know much more than that, and I have not seen any sort of computer generated pictures of what he will look like when surgeries are over.

*I do work at a day care. I am considered full time, but I only work abour 30 hours a week due to the time I have to take off to take Christian to therapies and doctor's appointments. I am also in my 2nd year of law school at Nashville School of Law.

*I would love to sit down and write a book, but for now, that is just impossible with all the other things I have going on. When things slow down I may try though!


Ok! So that's just about it! I hope I answered most of your questions and please feel free to ask if I left something out.

Monday, May 21, 2012

Team Christian T-Shirts

Many people have noticed the Team Christian shirts in some of my Facebook pictures and asked how they could get one. I debated trying to package and ship shirts, and didn't really want to get into that. I sold them locally for a fund raiser for Special Kids in March and it was difficult enough trying to get them to everyone who lived close. With all the other things I have going on, law school, taking care of Christian, and working, I just don't have time to get everyone their shirts in a timely manner
But I had a friend approach me and offered to take the brunt of the work, and really expressed her desire to sell shirts. I gave it some thought and decided that I would give it the go ahead, because it would be a great way to spread the word even more about Christian and his story and all that he represents. 


So, my friend Julia Robbins is heading this campaign and is taking on a huge responsibility all in the name of Christian. She has done everything, designed the shirts, created a website to place orders,etc. All the proceeds from each sale will go directly to Christian, and Julia has a safety guard in place to ensure that everyone can be confident that their money will be going to Christian and not be pocketed by someone trying to take advantage of us. I am able to view and have mutual control over every transaction that goes through and every order that is placed. 



If you would like to order a shirt, you can visit www.teamchristian2012.weebly.com and place your order. Please include shirt size,quantity and shipping address in the form on the page, and the email for the paypal is teamchristianbuchanan@yahoo.com. Once you have completed the Paypal transaction, your shirt(s) will be shipped! The cost of the shirts is $25.00 each. This covers the cost of the shirt, packaging, and shipping and handling. If you have any questions about placing an order you can also email teamchristianbuchanan@yahoo.com and Julia will be glad to help you out! 

When you wear your shirt, be sure to tell everyone who asks about it who Christian is and the amazing story he has! Thank you guys so so much for everything you have done for our family, and thank you Julia for being so kind to offer to do this for us!!! We love all of you so much! 

Thursday, May 17, 2012

Raising A Child Who Can't See

Our family - Raising a Child Who Can't See
After Christian was born and we realized that he was blind, it was devastating to say the least. Our initial reaction was absolute heartbreak. We didn't know what we were going to do or how we were going to manage raising a child who couldn't see. We had no experience or background in raising kids, let alone a blind child. We spent the first few days thinking about all the things that Christian wouldn't be able to do, like know what colors were, or see our faces, or drive a car, or play football.

We eventually got to the point where we realized, however, that we couldn't spend all our time focusing on what Christian couldn't do. We spend our time now focusing on helping Christian do all the things he can do, and doing them well. We want so much for Christian to be successful in life, and if we teach him to focus on what he can't do, he will not succeed. So we have shifted our focus, and we plan to teach Christian where to keep his focus.

A lot of people have asked me about Christian's eye and his vision because there has been a little confusion on whether or not he can see some. In my video I stated that Christian was born without eyes. I said "They just didn't form. They just weren't there." This is the simplified version of Christian's condition, for sake of shortening the youtube video, so I would like to elaborate and let everyone who is curious know!

Christian's condition with his eyes is known in the medical world as "Micropthalmia." Micro means small. Opthalmia means eyes. Christian has "some" eye underneath the conjunvtival tissue that is seen. We were told initially by Children's Hospital that Christian was completely blind, but it became apparent fairly quickly that he is not 100% blind.

At only a few days old, Christian would jump when we would take his picture and the camera's flash would go off. He would wake from a peaceful sleep when a light was turned on in his dark room. He turned his head away from sunlight on occasion. And on other occasions, turned his head toward it.

When Children's did an initial CT Scan of Christian's head, they showed me his eyes and explained that there were bits and pieces of a retina, pupil, and all the parts that make up the eye, but they were not in any order that would produce functional vision. His optic nerves look fairly normal, however.

With all that he can see, it is apparent that Christian does not see well. He does not react to facial expressions (smiling at him will not make him smile.) He also doesn't react to things like a television, or objects moving near him like a passing car. There have been multiple times that I have watched Christian feel around for toys that are near him and miss several times before finding it. As far as we can tell, Christian has some light and dark perception at best.

 His blindness does cause him to have developmental delays, and when you think about it, it will make sense as to why. The reason that babies develop the way they do boils down to pure motivation. They learn to crawl because they see a toy they want to get, or so they can get to mama. Christian does want those toys, and he wants to get to me, but because there is nothing for him to look at, he doesn't grasp the concept of the space around him like others. and how to move about in that space. So he has to be taught that reaching out or moving forward will get him the desired results, where as other babies figure it out on their own.

 Christian has done plenty of things without being taught that totally surprise me, though. He learned to reach out for a toy with very little effort. It almost came natural. It seems like such a simple concept to us, but think about a 3 month old who can't see. How in the world do they know to extend their arm and grab a toy? I'm not sure of the answer, but I do know that Christian learned fast! He also learned to pull up to stand on his own. This was also a motivation thing for him. Christian is learning more and more about boundaries and space around him. And he has learned that he likes to explore the world around him to find things to chew on. So he learned to pull to stand all by himself while in his crib so that he could chew on the crib rails. Yes, he is silly.

 There are a lot of things that go into raising Christian that I have had to learn over the last 14 months as well. We have to talk to Christian constantly. Well, we don't have to, but if we ever want him to talk and understand things, we need to. Every time we make a noise we tell him what it is. Every time we change his diaper, or wipe his hands, or whatever it may be, we have to explain it to him in as much detail as possible. The more we talk to Christian the more he talks back (in a good way.)

We are still in the early days of raising Christian. We still have many more blessed years to come in raising our little man who will one day be a big man. In all that in between time, I am praying for guidance in helping Christian to become a God fearing, God obedient, successful, happy, productive, loving adult.

We are also continuously praying for healing in Christian's life and that he will be able to see one day. We have no idea how it will happen, but do the details really matter with an outcome that important? :)

I hope this gives everyone a glimpse into the world of raising Christian with a focus on this one particular aspect. I also hope it answers everyone's questions about his vision! Please feel free to ask questions as well!!!

Sunday, May 13, 2012

Donations

As you might notice, to the right of this blog post is a new button. I am not one to ask people for money - EVER. But since so many people have asked me how they can contribute to Christian, my IT guy hooked me up and helped me create a button where people can donate directly to our PayPal account. I certainly don't want to stop God's blessings on us when He sees fit to send them!

We would like to say thank you to all of the support, encouragement, and love that we have received! It has been unbelievable to say the least, but we are so proud to share Christian with the world!

Saturday, May 12, 2012

"Thanks" just seems inadequate

It's one o'clock in the morning, 3 days after my video has gone viral. I am overwhelmed with trying to chat with everyone and respond to messages and read comments and absorb all the love I am receiving. In the last 3 days, over 6 million people have watched me pour my heart out telling my family's story. I didn't know that it would receive such a response, but I do know that God is all over this!

When I was sitting at Vanderbilt Children's 14 months ago, I thought my life was over. Little did I know that it was only just the beginning. I was so wrapped up in my own problems that I couldn't see what God was unfolding. Now that it is unfolding, I am just sitting back and being in awe of everything. I don't think I've done anything special, and I am definitely not special. It is Christ in me that is so special. He is the one who gives me my joy, my happiness, my love, my peace. Without Christ, I'm positive that I would not have been able to handle everything I've been through this past year. I give all the credit and honor to God! He has sustained me for the last 2 years through the prgnancy, birth, and raising of Christian. How awesome is that God we serve that He has not only seen me through this, He has made us victoious!!

The video going viral has brought so much into my life! I doubt I can mention everything!
 I have received messages from people telling me that if they are ever faced with the same decision as I was, they will choose life!!!!! God is using Christian to save people!

I have had people tell me that they felt sorry for themselves until they saw the video, and now they are thankful that their life was brought into prospective. God is using Christian to bring true joy to people and show them to throw off self pity!

I have had people tell me that Christian is beautiful. Last month I was worried about putting him a baby show. You better believe now that I will walk Christian out on that stage with the biggest smile on my face and be the proudest mama you've ever seen. God is using Christian to show what true beauty is!

I have met people like Christian! Who are amazing, and kind, and happy people! They give me hope that Christian will be just fine! God is using Christian to show people what perserverance looks like!

I have had national news media contact me for interviews, one station planning to follow me around next week to film a day in the life of me and Christian, we are on multiple online news outlets, and our video has been watched over 6 million times. God has shown me that if I will listen to Him, He will do exceedingly more than I could imagine! God is using Christian to spread His message across the entire world!

I could go on and on and on about all of the amazing things that have come out of this. But it's nearing 2am so I am going to make this one short. I just want everyone reading this to know, that I am so thankful for you all. "Thanks" just doesn't do justice to way I feel. Thanks is an inadequate word to describe my graditude. In fact, there really arn't any words that would be adequate.

So I guess I will just have to say THANK YOU from the bottom of my heart! And when Christian is older, and he hears about all the amazing people who have come into his life, I know he will be thankful too!