Frequently Asked Questions about Christian

We wanted to take a minute and thank everyone who stops by our page to leave a thoughtful message, words of encouragement, hugs and kisses, pictures and quotes or to ask how our family is doing.  We are so grateful for all of our friends who have been on this journey with our family since our video went viral and to all of our new friends who join our page daily.  Chris, my parents and I are so grateful for the love you have shown for Christian and his sidekick, Chandler.

Our friend, Marisa who helps me admin our page has mentioned that we are asked many of the same questions about Christian repeatedly, and thought we should put together a question/answer sheet of some of the most asked questions so that we can share as much about Christian as possible.  As always, we welcome any messages you may like to send in private and we do our best to try to get back to you all as soon as possible.  To all of our new friends who have just joined our page either through a friend or you found our video, we hope this will help you learn more about Christian’s past, present and for everyone, what is in Christian’s future.

Our precious Christian is three years old and was born February 18^th, 2011.  His condition is very rare and there have only been around 50-60 cases ever documented.  Dr. Flores, his plastic surgeon said “he’s one in a million” and he really is “one in a million” to us.

Some of the questions go back to my pregnancy.  I had a very normal pregnancy and actually felt great the entire time.  On our 18 week ultrasound the doctors discovered that Christian had a cleft lip and palate.  

1. How old is Christian / When is Christian's birthday? 
      Christian's birthday is February 18th, 2011. As of today, 11/16/14, that makes him 3 and a half years old.

2. What is Christian's diagnosis? 
     Christian's diagnosis is Tessier (pronounced tess-ee-ay) cleft lip and palate, classifications 3, 4, and 5. Those numbers simply means the extent of the cleft and where cleft is located on Christian's face. The number classification for Tessier clefts run from 0 being the the midline of the face to fourteen with 4 and being the rarest. Because Christian's cleft is classified as two of the rarest, this is what makes his case one in about 50  in the world. What all that means is that Christian was born with many parts of his face and skull missing or underdeveloped, including the roof of his mouth (palate), his upper lip, both eyes and both bottom eyelids, and a piece of his skull on the right side of his head next to his eye.

Christian before his first reconstructive surgery! Sweet sweet baby!

3. How is Christian's hearing? Was it affected by his cleft? Why does he always have a headset on? How can he play on a tablet if he can’t see?
     Christian has great hearing and we are so thankful for that because he loves music so! Christian's hearing was not affected by his cleft. He does get recurring ear infections because of the cleft though. Christian's eustachian tubes (the tubes we all have in our ears that drain fluid off our ear drums) are not shaped correctly and so they don't drain fluid off his ears the way they should. He has had ear tubes since he was about 14 months old and will continue to have them in the foreseeable future.

     This little guy loves music!  Christian likes to listen to all types of music….classical, Christian and his favorite ELMO!  He is so much fun to watch and listen to as he can belt out some tunes!  He has a little music box with his favorite music downloaded.  We also have movies and books that he will listen to as well.   

Tablet: There are many games you can download on a tablet where he can play by touching the screen.  One he enjoys is Peek-a-boo Barn.  This plays "Old McDonald" and you can hear cats meow, dogs bark and cows moo.  So when you ask him how a cow goes, he will moo.  He has learned a lot from his touch/listen/learn games.

A little fact: Did you know that your senses heighten when you are blind?  Christian’s sense of smell is amazing.  We have noticed recently he will enter a room and take a little sniff.  He is learning his surroundings by his sense of smell and who enters the room.  His sense of touch and hearing has allowed him to start playing the piano at the age of 2.  We hope his sense of taste will come later…we are working on that.

     

4. Is Christian mentally impaired? Was his mental capacity affected by his birth defect?
     I think more people wonder this question than actually ask it because they don't want to offend me, so first I want to say that I am not offended by the question. It is definitely understandable for someone to be curious. In fact, doctors were confident that Christian would be mentally impaired. Christian, however, is not mentally impaired and is actually very intelligent. He picks up on things must faster than anyone expected and has a love for piano and other musical instruments far beyond his age level. Christian has surprised everyone with how smart he is and how fast he learns.

5. What does Christian like to do? What are his favorite things? 
     Christian really enjoys music! That is probably is biggest and first love! He loves listening to and playing music. He likes kid instruments but he prefers real instruments for sure! He loves guitar and piano the most. We keep headphones for him (we go through quite a few sets) and he was gifts a little mini ipod that we loaded music onto for him. His favorite music includes contemporary Christian such as Chris Tomlin, Big Daddy Weave, Mercy Me, and similar artists. He also loves Sesame Street but especially Elmo. We have worn YouTube out with listening to every single Elmo song we can find. Christian also enjoys any kids songs type cd's as well. Christian also loves swimming and outside activities. He can literally sit a pool for hours and just play and entertain himself. Christian also loves to read and we have a large collection of children's books. He never tires of hearing stories and will sit and listen for much longer than most kids his age. He especially loves touch and feel books that he can interact with and we are starting a collection of braille books as well. Some people have asked me what they can send Christian for his birthday or holidays or just because. I made an Amazon wishlist for him at the request of a few friends that can be found here: http://amzn.com/w/1K7T6QF0UOFGV .  It is definitely not an exhaustive list, but it can give you some good ideas of some things he likes and needs.

6. What sizes does Christian wear?
      Christian wears a 4T in cloths and a 8 in shoes. He wears a size 6 in diapers or a 4t-5t in pull ups (they run kind of small.) Just FYI, Chandler is in 24 months clothes, size 4 diapers, and a size 6 shoes.

7. Does Christian has any vision? Is he blind in both eyes? Didn't you say he can see light?
     Christian's medical condition pertaining to his eyes is called micropthalmia. "Micro" means small and "opthalmia"  means eyes. When Christian was growing in utero, as his eyes were developing, blood flow was cut off to his eyes and they simply stopped forming. This is why Christian has "some" of the eye ball structure but that he is eye not like it should be. Both eyes are affected very similarly, but we have seen on a CT scan and just by looking at Christian you can tell that the right side of his face was more affected than the left. A CT scan showed that Christian's left eye was more developed than his right, and that his optical nerves were in tact. So it stands to reason that if he can see, it would be more out of the left eye. However, we have found that Christian can see lights if they are held up close to his eyes, and that he has that light perception on both sides. We also know that he can see enough to tell if a light is high or low, as he can reach up to grab a light that is high or down to reach a for a light that is low. Christian can see things like camera flashes, when a light is turned on in a dark room, sunlight, and my cell phone light when he holds it close. He can't, for example, see what is on my cell phone screen, that we know. This small amount of vision that Christian has still qualifies him as "blind" or visually impaired.

8. What about Hero the dog? Is he going to be Christian's seeing eye dog?
     Hero is our Boston Terrier pup who we got in March. His birthday is January 15th, 2014 and he is THE BEST dog we've ever had! He is definitely a member of the family! He will not be Christian's seeing eye dog, but we do plan to have him service trained for Christian. Seeing eye dogs generally have to be much larger than Hero because they have to lead their human around, so they need a little weight on them. Also, most humans don't get a seeing eye dog until they are at least teenagers, if not older. That is because it takes extensive training by the human too, and the human needs to be able to attend the school to learn how to handle his K-9 partner!

9. What surgeries has Christian had? How many more will he have?
     February 22, 2011 - Christian had surgery to insert his feeding tube and close the skin together over his skull where the skull was missing because the skin was also missing.
     May 23rd, 2011 - Christian  had his cleft lip reconstruction surgery and his club foot repair, known as a tendon cord lengthening. Although it takes only one sentence to describe this surgery, it was by far the hardest on Christian. He was much too small to undergo such a major surgery and it nearly killed him. If I could go back and make the doctors wait, I would do it in a heartbeat.
     April 24th, 2012 - Christian has ear tubes placed for the first time and also a ABR (Auditory Brain stem Response) hearing test while he was under anesthesia. The ABR test results sh.owed that Christian has no hearing impairment.
     June 2013 - Christian has his second set of hearing tubes placed.
     November 26th, 2013 - Christian had his first palate reconstruction surgery. This surgery was performed in Indianapolis, Indiana at Riley Hospital for Children instead of at our local children's hospital. It was a huge step but so worth it! We were treated like royalty and it was apparent in Christian's recovery how well he was taken care of. Christian's hard palate was closed. This is the hard part of the roof to the mouth near the front.
     May 22nd, 2014 - Christian has his second palate reconstruction surgery at Riley Hospital for Children. This surgery was to repair the softer tissue in the roof of his mouth that goes into the back part of his throat.  This was a very scary surgery for our family. The risks for this surgery were much greater than most of his previous surgeries because of it being so far back in his mouth and throat. It carried a risk of obstructing oxygen due to swelling. Thankfully Christian did really well and had no complications.
     October 13, 2014 - Christian (and Chandler) had ear tubes placed. Christian only had a tube placed in his left ear this time. His right ear already had a tube from the last surgery. His left ear did not have a tube from the last surgery because when they went in to place the tube in his left ear, they saw that his ear drum had a tiny perforation. They can't place a tube in an ear drum that is perforated. So, now the perforation is healed up, and Christian had a tube placed in his left ear as well.

     It's hard to say exactly how many more surgeries Christian will have. There are so many factors that have to be taken into consideration, such as how well Christian heals from the previous surgery and how long it will take to recover, the amount of work that the surgeon is able to get done during a surgery (it can vary from what is planned), what things we opt for Christian to have done and what things we choose not to have done. We do know generally that there are a few surgeries that Christian will for sure have to have. Christian's palate is completely closed, however, there are a couple of small holes that will have to be closed later. This will be a comparatively small procedure. He will also have to have his top lip adjusted because it is too short. Christian will require some dental work, and also something will have to be done for his eyes, however at this point we haven't decided exactly what that will be. Christian will also have to have bone grafts in his mouth where there is missing bone due to the cleft. Several of these will have to wait until he is older because his little body is not strong enough for such big procedures. We don't have a future surgery date in mind and have decided along with his surgeon to put off any surgery for at least year for now. Christian has had his last two major operations in a six month period. That is hard on a little body. The best thing for him right now is to give his body time to rest and heal from these two big procedures so that when he has his next surgery, he will be strong and be able to handle it well.

10. What is the red part around his eyes?

     It is called conjunctiva. To describe this in a way you can understand, is it’s just like our eye lids but flipped inside out.  Due to his cleft lip going all the way up to where his eyes would have formed, his eyes also cleft.  This will be one of the many surgeries he will have in his future.  They will have to create upper/lower lids. The tissue is more sensitive than skin, but it has not been an issue for us. Please know his eyes do not hurt or bother him in any way.  He has never scratched or hurt himself.  

11. How do you protect his eyes from the sun/elements, how do you keep his eyes clean?  All great    questions:

     We keep sunglasses and hats on Christian to protect his eyes from the sun.  This is Christian’s 3^rd summer and we haven’t had any issue due to the sun or wind.  We keep Christian’s eyes clean with water and a soft wash cloth.  He has working tear ducts, therefore his eyes do self clean some and stay moist. We are careful not to wipe too much because it could irritate the tissue. We also have lubricating ointment and antibiotic ointment as needed, but that is not often. 

12. Will Christian ever be able to see? Does he walk around on his own? Will he have prosthetic eyes?  This is a hard question to answer:

Will Christian ever be able to see: Wouldn't that be amazing if it was a possibility someday for Christian to see!?!?  Medical technology is evolving every day.  But, for now we have accepted and are at peace knowing Christian is blind and that there is no medical technology that can help him.  We will continue to work with him on a daily basis so that he can someday learn to read Braille, walk on a public street and flourish in our sighted world. 

Does he walk around on his own: When Christian enters a new room it usually takes him 20 to 30 minutes to become familiar with his surroundings. He takes everything in and memorizes things. He can learn, for example, how many steps before he’s close to anything sitting in the room. He has been known to use the edge of area rugs to navigate where he is as well. We have taught him by saying “put your hands out” when he gets close to something like a wall, TV etc. There are still times when he runs into things or trips, but he is doing really well with getting around. He is learning to use his cane, but his a typical 3 year old and doesn't always want to hold onto it. Again, there are no boundaries as to what Christian can do. Have you seen Christian drive around in his battery operated Police car? There is no stopping this little guy and the accomplishments he makes every day!

Prosthetics:  We have decided for now that making the decision of whether or not to give Christian prosthetic eyes is just something we can't answer. Since Christian has some light perception, we don't want to take that away from him. We also can't in good conscious put Christian through a dozen or more extra surgeries for the prosthetics unless he decides that he wants them. We want Christian to grow up with confidence about himself and who he is created to be, and we don't feel like we can do that if we are constantly putting him through surgeries simply to make him look better or so that other people thing he looks more normal. If Christian ever decided that he wanted to go ahead with the surgeries it would take to give him prosthetics, we would gladly support him.

13. How does Christian eat, what types of food does he eat?

Christian is fed via a feeding tube.  For those of you who are not familiar with a g-tube, here is a short explanation - A gastrostomy tube (also called a G-tube) is a tube inserted through the abdomen that delivers nutrition directly to the stomach. It's one of the ways doctors can make sure kids with trouble eating get the fluid and calories they need to grow. Christian receives a blended diet through his tube. I cook up foods. blend them up in our Vitamix blender, and push them through Christian's feeding tube, 5 times a day. Christian used to take only formula/ The formula has all the nutrients he needs to live, but I decided that Christian would benefit greatly from having real food, so that's what I did.
      He has the feeding tube because before he had any surgery, Christian's cleft was so wide that he was simply unable to take a bottle or breastfeed. Feeding specialists tried every type of bottle they could, but nothing would work. Christian had to be able to eat, so the feeding tube was our best option to make sure that he could get the nutrition he needed.

     Since the last surgery, we have started allowing Christian to eat using his mouth. Since he has never eaten using his mouth, this is all new to him, and very scary. Many children with feeding tubes develop what is called an oral aversion, meaning they are averse to eating by mouth. Christian is making great strides in working to learn to use his mouth to eat. Right now, he will agree to eat yogurt and drink some from a sippy cup. He usually eats about a half a cup per day, which is huge for a tube fed kid! He does not like things that he has to chew or crunch or bite. He is averaging 10 to 15 ounces per day of formula by mouth as well, using his sippy cup.

     We can’t wait until he can eat completely by mouth, but for now he will continue to be fed through his g-tube.  Christian attends feeding therapy several days a week so he can learn to taste different food, feel texture and condition him on how to swallow and much later down the road to chew food.  Remember how we were just talking about our senses?  Christian’s sense of hunger doesn't come from smelling food which tells our brain we are hungry therefore to eat.  He does know when he is hungry by some of the same other cues that we have such as the hunger pangs we feel.  Lately he has been letting us know he’s hungry and will say “eat-eat”.  During the day Christian is fed every 3 hours and receives 8 ounces of blended up foods, plus 10 to 15 ounces of water, and whatever amount of formula and yogurt he agrees to eat by mouth.  

The roof of Christian's mouth before he had any surgery. A wide gaping hole. 

14. A little about Christian:  Christian is a happy, healthy and funny little three year old.  He stays busy and plays well by himself.  He is always digging to the bottom of his toy box for something new to play with.  And sometimes he just wants what Chandler is playing with!  He loves music and can sing almost every song.  His laugh is contagious and we love to laugh with him!  He loves playing outside on his swing set, playing in the pool and helping us in the garden.  He attends speech and feeding therapy every week and recently graduated from his physical therapy.  He has three cousins who live close to us that he plays with almost every day and they love each other very much.  He get super excited when his Daddy comes home, which usually means Christian get’s to wrestle with his Daddy.  And two very important people in his life are his Nana and Pa.  If there is one place he loves to visit it’s with them…ok and maybe Chuck E Cheese!

15. Can Christian talk? 

Yes and he does, and a lot, and he sings, too!  He has quite the vocabulary and it’s growing all the time! Christian's speech is very slurred because of his cleft. He has trouble pronouncing many sounds because of his cleft, but he attends speech therapy every week to help him and he will one day conquer that too!

16. How do you know when Christian is sleeping?
I get this one a lot. People ask this because, obviously, Christian can't close his eyes when he sleeps, and therefore, it can seem difficult to tell when Christian is asleep. Actually, it's not difficult at all. Christian does all the other cues when he falls asleep that you might see anyone else do. His breathing slows, his body relaxes and he gets very still and quiet. He even jumps or twitches a little bit from time to time right when he first falls asleep. Occasionally, but not often, he will even snore lightly. We can  also talk to him and if he doesn't respond, that's a good indication (but not fool proof) that he's out! :) We also have a little joke we do to people when they are around us and Christian is sleeping and they ask how we can tell. We pick his arm up, let it drop, and say "We do this. It's called the arm test. heehee"

17. How do I order a Team Christian shirt or bracelet?
I do not keep a large stock of t-shirts, simply because it's expensive. What I do is occasionally place an order for all sizes when I am running low on most everything. So, if you would like to order a shirt, you can send an email to TeamChristianShirts@gmail.com and let me know what sizes and quantities you want. If I have what you want, I will let you know and then send you a paypal invoice. As soon as that is paid, I ship out within just a couple of days. If i do not have some of the sizes you are requesting, I will let you know what I do have available and see if any of those sizes will accommodate. If i just don't have what you need, I don't hold onto the email and respond when I do get that size in, and I do that for several reasons. Sometimes, it is months later when I place a new order. I don't expect anyone to wait around and hold back funds for that amount of time for our shirts. Also, the volume of emails and messages that we receive on a daily basis simply doesn't allow me to be that organized. 

18. Is it really you answering messages or do you have admins?
I do have one admin who helps me with Christian's fan page. She is a close friend who I know personally and an honorary grandmother to Christian and Chandler. She answers MOST of the messages for me, and forwards ones to me that she finds are important for me to respond to personally. I do answer some messages myself when time allows. Unfortunately, raising two boys and making my way through law school just doesn't allow me a lot of time to answer messages. One day, I hope to make it through every message we've been sent (right now we are at over 5000 unread on the fan page and over 2000 unread on my personal Facebook page) so if you get a reply from me in 3 years, don't be surprised. However, if you ask and I say "This is Lacey," then rest assured, it really is me that you are messaging. :)

19. Where can I find your original video?
 The link to the original video is here: https://www.youtube.com/watch?v=oWCbkyR0cy0&list=UUMtSA7wWHQMgxbCeTzMCwUA

You can also subscribe to my YouTube Channel and watch tons of adorable videos of Christian from the past 3 years. I also post video blogs on a variety of topics. You can find my channel here: https://www.youtube.com/user/SuperChristiansMom/videos?shelf_id=1&sort=dd&view=0