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!
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.