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.
1. How old is Christian / When is Christian's birthday?
Christian's birthday is February 18th, 2011. As of today, 7/22/14, that makes him almost 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.
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 3T 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.
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.