Christian Taylor Buchanan

Christian Taylor Buchanan

Monday, October 1, 2012

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 Children's Hospital 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, 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 Children's 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.

Tuesday, September 25, 2012

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 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 there, 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 our 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, and they disagreed with the 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 Christian's doctor, 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 Christian's doctor. 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 our children's hospital 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 Christian's doctor, 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 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 had experienced prior 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!!!!


Thursday, July 5, 2012

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  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. I never got a call 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  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, 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 our plastic surgeon and told him what we had found out, and although he said that he disagreed with the UT Medical Group findings, and that Christian still needed the skull surgery, 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 had, 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 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.


Thursday, June 28, 2012

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!

Saturday, June 2, 2012

Cleft Lip & Palate Foundation of Smiles

As you may have seen in a recent post, I have been asked to be on the Board of Directors for the Cleft Lip & Palate Foundation of Smiles. I am so honored to accept this position and I can't wait to get the ball rolling and dive in! I thought it might be appropriate to let everyone know a little more about the Cleft Lip & Palate Foundation of Smiles. I thought it might also be a great way to reach out to all my cleft and craniofacial families that I have met in the past month!!!!

The Cleft Lip & Palate Foundation of Smiles began in 2009, and their mission is "to educate and bring awareness to others around the world whose lives are being touched by cleft lip and/ or palate and other Craniofacial anomalies by providing Support, Education, Advocacy, and Research."

My title on the board will be National Newsletter Coordinator. I have been brain storming lately on a way to keep all my cleft and craniofacial families connected and reach out to them. So as the creator of the Foundation and I were chatting one day, I happen to mention the idea I had of starting some sort of news letter. I, however, lacked the platform to be able to take on such a huge responsibility. Rachel then called me a few days later and pitched the idea of giving me the platform to coordinate the newsletter! My responsibilities will include gathering and approving the information that goes into the newsletter and the layout and design. I am so thrilled and honored to be asked to undertake such a huge and fulfilling responsibility.

Through the Cleft Lip & Palate Foundation of Smiles, families can learn a lot of information about clefts, find local support groups, apply for assistance in purchasing special feeders, read smile stories of children with craniofacial differences, learn about IDEA (Individuals with Disabilities in Education Act) and IEP's (Individualized Education Plans) for children who will need special education in the school system, and sign your child up to receive cards from foundation members during hospital stays, to name a few things.

The Foundation is an ever growing and adapting foundation that is always finding new ways to reach out to its families to provide support, education, advocacy, and research. It is also a VAST resource. The Foundation provides tons of useful information to its members as well. It is a must-have resource for all craniofacial and cleft families!

I encourage all of my craniofacial and cleft families to join this foundation and begin reaping the benefits of this amazing organization!

You can find the Foundation's website at www.cleftsmile.org.
You can also join their Facebook page at http://www.facebook.com/rachel.mancuso1

Please also visit the Cleft Lip & Palate Foundation of Smiles donation page. The Foundation is about to begin a campaign fundraisier to raise $25,000 to help it's member families in need!!!!
http://www.cleftsmile.org/about-us/make-a-donation/

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!

Friday, March 16, 2012

The Right Choice Video

A week ago today I watched a video that I'd linked to from Facebook about a young woman named Lizzie. Lizzie used flash cards which cover her face during the video to tell her story. She told of her diagnosis with a syndrome that was so rare it was unnamed. It distorted her facial features and interfered with her ability to gain weight. Lizzie looks dramatically different than most people. She tells the story of being in high school and someone taking an 8 second video of her, putting it on YouTube, and titling it "World's Ugliest Woman." She explains how some of the comments on the video would say "Do the world a favor and kill yourself" and how it hurt her, but instead of getting revenge, she got even. Lizzie set goals for herself to prove that she is an amazing person, and she accomplished all of those goals, such as graduating college and having a family. At the end of the video Lizzie removes the flash cards and you get to see her face. Personally, I thought she was beautiful!

This video inspired me so much because I can relate to knowing how it feels to look different. It may not be me that looks different, but the stares at my son hurt no less than if they were at me. I thought about how devastated I would be if someone said something to my Christian like they said to Lizzie, that the world would be better without him in it.

So I decided that I have a story to tell, too. And a plan began hatching in my head. I sat down right there at work on my lunch break and wrote out the note cards on cut up pieces of notebook paper. The plan rolled around in my head for the rest of the day, and when I got home that night, I sat down at my computer and ran through a practice video once. Then I grabbed my Christian and we made the video that I posted!

I posted it to YouTube that night and got about 600 views. Then someone suggested I upload it to GodTube, so I did. Two days later I got a call at 7:30 in the morning from a friend. She wanted to tell me that she had gotten an e-mail from GodTube and my face was plastered right at the top of the e-mail! My video had been chosen as the highlighted video of the day!

Before midnight that night, my video had received over 20,000 hits! In the next 4 days, that number has doubled to over 40,000 hits! The video has received almost 200 comments, all of which have been encouraging and so sweet! I have received countless Facebook friend requests in the last few days, and so many encouraging comments.

I am absolutely blown away by the response that the video has had. I never imagined it would be this big, but I have definitely learned a lesson in not underestimating God's ability to use people.

 I am humbled and awestruck with the fact that God is using my son to fulfill His purpose! I just can't wait to see how He uses Christian in the future!

So below is the link to the video on GodTube just in case anyone hasn't seen it yet! Thank you so much to everyone who is supporting us in our journey!!

The Right Choice - Christian's Story

Sunday, February 26, 2012

Gains and Losses

Recently, I met an amazing lady named Michelle, whose blog I follow because she and Christian were born with the same type of cleft. Because this cleft is so rare, I treasure our relationship as one in a million...or I guess you could say 50 in 7 billion. :)  She is definitely a special person just like my Christian! She has been through more in her life than most of us will ever face. She recently posted a blog entry called "Gains and Losses" where she listed all the major losses in her life, and what she had gained by them.

I absolutely fell in love with this idea. I think it is Godly, it is positively focused, and it is productive to healing and moving forward in one's life. When we suffer traumatic losses in our lives, we have two paths we can take. Changing our circumstances is usually not an option, but what we can do is let it make us stronger or let it defeat us. What Michelle has done by purposefully noting what she has gained from her losses is open a door to becoming stronger through those losses. So being that I have been through a lot in the last couple of years, and am still healing and finding my way, I was inspired to write my own Gains and Losses blog entry.

My loss: I want to start with the beginning and progress chronologically, so first, I want to address the loss of having a normal pregnancy. I didn't get to experience the excitement and joy of expecting a new baby, at least not in the normal sense. I had weekly and bi-weekly doctors appointments from 18 weeks on. I had my head filled with cautionary warnings that my "child may not live outside the womb" or "he will probably be mentally impaired." I could go on and on, but I think you get the idea. When I think back on my pregnancy as a whole, I can definitely say I did enjoy it. I loved being pregnant, and feeling Christian wiggle around. I loved my maternity pictures, and getting Christian's room ready for him, buying his little clothes and diapers. But I still mourn the loss of not having a normal pregnancy.
My gain: I treasure every single little thing about Christian so much more so than I think many other women do with their children. PLEASE don't take this as a judgement on anyone! It is not AT ALL!!! I hear many, many people say that they need a break from their kids, or their kids are driving them crazy, and so on. But I can honestly tell you that I have never wanted a "break" from Christian. Maybe that day will come eventually (haha!) but as of yet, I enjoy spending every second of every day that I get with him. When Christian was about 8 months old, a lady I knew who had a 1 year old was also pregnant and almost due. We were talking and she kept on and on about how she didn't know how she would handle having two in diapers, how it was going to be so hard, how she was dreading when the baby came. Today, this is just normal rhetoric, this is just how people talk. I don't think anyone REALLY means it, but none the less, I think there is a touch of honesty in it. I almost got upset at the fact that this lady was complaining about having two beautiful, healthy children, something I would die for. So my gain is the sense of preciousness that I have about Christian, the real knowledge of just how much of a gift he really is.

My loss: The emotional scars that still haunt me from our NICU experience. Our NICU experience was awful to say the least. I know I've touched on it before, but I'll say this: the Children's Hospital NICU treated me and Christian like pieces of crap who weren't worthy to be there. With the exception of a few amazing individuals who really cared, people were rude, hateful, disrespectful, and so unsympathetic to the fact that I was hurting that they literally left me with an emotional scar.
My gain: I have a passion to pursue better patient treatment for families with disabled members. When I complete my juris doctorate, I plan on helping families that will be where I was and be a liaison for them. It is not just something I want to do, it is a passion. This has opened doors to other areas where I will be able to help people with my degree, in social security benefits, special education laws, mental health laws, and the list goes on and on. This dream is what keeps me in law school from week to week.

My loss: Missing out on all the things Christian won't be able to do because of his vision impairment.
When we first found out that Christian was blind, I can remember closing my eyes and literally thinking to myself "This is all a dream. I'm going to wake up any second." I have had to come to terms with the fact that Christian may never see my face, that he may never know what the color blue looks like. I have had to find peace with the knowledge that Christian might have to depend on someone for the rest of his life to help him accomplish things.
My gain: I have had the unique opportunity of watching Christian astound me, and others, with all the things that he can do, and that he does well. And I have learned to change my way of thinking, to take my focus off of what Christian can't do, to what he can do. His vision impairment doesn't make him as "pitiful" as I once thought it would. He is so secure and well adjusted in who he is and how he does things that I shocks me. I also would like to add here that I gained a new faith in God, a powerful, moving, life changing faith. I will never give up hope that one day Christian will see. I don't know when or how, but my faith in God will not allow me to let go of that hope. Faith is the substance of things hoped for, the evidence of things not seen. If God never does make it happen, I accept that without any bitterness, but if my faith in that hope is what makes it happen one day, then I will keep believing until the day I die.

My loss: Watching Christian struggle with so many things that other babies do without much help. Christian is 12 months old and he still doesn't crawl. He is getting close, but he's not there yet. I am guessing that he won't walk until somewhere around the age of two, and therapists have told me to expect it as late as three. It breaks my heart to have to see him struggle. Christian didn't smile for the first time until he was two months old. I wanted so bad for Christian to smile at me, to let me know he was happy, and it broke my heart that he couldn't see someone smile to learn how to do it.
My gain: Every single little milestone that Christian reaches is cause for celebration. Just today, Christian clapped for the first time, and I shouted because of the joy that consumed me. The first time he smiled, the first time he said "mama," the first time he sat alone, or fed himself, those meant so much simply because Christian did have to struggle to do those things, yet he perservered. A second gain with this is that I get to see just how strong Christian really is. He not only amazes me when I see just what he faces and conquers, but he convinces me that he WILL be ok.

My loss: The pain of watching Christian go through surgeries. This is BY FAR the most painful thing I've experienced. I tell people that the only way I can describe the pain is that you can feel yourself breathing, but you are not sure how you're still alive. I hurt so bad that I literally thought I would fall over dead sometimes.
My gains: I treasure every day, every moment I have with Christian. It's harder for me to lose my temper with him because I realize that I'd rather have him here and misbehaving then for him to not be here at all. I have watched Christian waking up from surgery, both eyes blacked, bleeding from both eyes, his nose, and his mouth, gasping for breath, moaning in pain, and swollen to three times his normal size. Somehow, the fact that I never get to sleep in anymore, or that Christian can be super fussy when he doesn't feel good, just don't seem to matter all that much.

My loss: My relationship with Chris has suffered tremendously since Christian's birth. I won't go into gorey details, but I will say that with the national divorce rate at 50 to 60%, the divorce rate for parents with special needs children is 70 - 80%. The extra pressure and added stress wear hard on a marriage. We are not the same people we use to be, and our relationship is definitely different.
My gain: I have become more independent. I depend on myself for much more now. and I know now just how strong I am because I've had to withstand so much without that support system of a spouse standing beside me. I am confident that I am going to be ok.

As a reflection on all of this, I have to say, that I think everything happens for a reason. I know that God knew all of this would happen long before it ever did, and I believe that He has plans to prosper me and Christian and to give us hope and a future. I know that although I've suffered a lot of loss in the past few years, I have gained so much more; things that most people will never suffer, but also that most people will never gain. Of course, if I could do something to make Christian better, to wholly heal him, I would do it in a heartbeat, but if I had to do everything over again, I would do it. I choose not to be defeated.