Christian Taylor Buchanan

Christian Taylor Buchanan

Friday, May 25, 2012

Surgery, Hospitals, and All That Yucky Medical Stuff

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

34 comments:

  1. thank you for writting back to to questions :D youre such a great mommy

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  2. I would like to say that instead of writing a book, maybe just hire someone to put together all of your blog posts into a book for you. Since you wrote all this already, it would not make sense to start over again. You can hire a sort of autobiographer to put together your blog posts for you, and they would probably earn some of the money from the book sales. But that would take the pressure off of you. I am sure you can research autobiographers and publishers on Google. You probably would have to pay some kind of fee for both. Hope that helps. Loved this blog post by the way! Gave me alot of insight that I didn't know about your son's condition. :) Have a great weekend!

    -Lara M.

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  3. You did magnificant in answering the questions that many people had. Wonderful blog :) You should know now that with any future surgeries "we will all be right there by your and Christians side" Never again will you feel all alone in the hospital! I love you honey. Hugs to you and little C <3

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  4. Thank you for sharing this with us! You sound like you are an awesome mama. I hate that you've had a bad experience at Vanderbilt! It seems like they could have more empathy for you and Christian. Thanks again for sharing Christian's story with us:)

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  5. Lacey you are amazing, very informative and i did smile when i read how Christian talks almost non stop, a very special child and family <3 I also love that you would like to adopt, have considered that myself x

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  6. Thank u lacey! I happy to hear u are not afraid to have more children. :)

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  7. Your family is truley amazing. My son who I adopted had alot of problems also But seeing what you have been threw and going threw keeps me going. Your truley amazing and your son is simply gourgous. I unfortunately couldn't have children of my own but I wouldn't change my son for anything. And we are adopting a baby girl also She's due anytime to come into the world.I cant wait to meet her when she does. Adopting children is truley a blessing. Thank you so much for sharing your precious family and storys with us all. God bless you!

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  8. Lacey, I too was born with a bilateral cleft lip and palatte and so was my 3rd child. Doctors told my mother I shouldn't have children because of the chances. I have 3 children my 3rd being born with the bilateral clefts. Look what id had to miss out on if I had listened to those doctors...point being...don't always go with what those doctors tell you! You are his mother, you know better than anybody what him and you both are capable of. I commend you as a mother for going with your gut and thinking of your child first. You truly are an inspiration and so is your little miracle. I had my sons pediatrician tell me not to feed him regular foods. I had been for months before that. I compromised. My son sucked a bottle...yes sucked a special bottle. I figured out what worked for us. Christian is the prime example of what a mothers love is all about. God bless you and yours

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  9. I was born with a complete bilateral cleft lip and palate in 1975. I had over 12 surgeries from 6 months to 27. I ended up switching to NYU craniofacial center as an adult and had two surgeries with Dr. Court Cutting who is a miracle worker. He explained to me that if I had been born now, I might have only had three surgeries total since the technique is much better. I highly recommend that you consider traveling to NY for one of C's surgeries since it might save him from having a few additional surgeries later on. I'm so inspired by you and follow you on FB and your blog every day.

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  10. Looks like you have a such a little trooper on your hands...and a handsome one at that :) I have such little respect for doctors who even mention abortion. Not in the cards for me...never. You definitely did the right thing and Christian is so blessed to have you as his mommy. I hope and pray that he gets better care elsewhere. Don't be afraid to reach out to the community or anyone that might be able to help. You have such a beautiful boy and I just know he will do great things :D

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  11. It is nice to hear how things have been in the past and future for you both. You are an amazing and strong person! I know there is going to be so many people who are going to be changed because of this strength and love you show. I found your video off a friends post on facebook as I see many posts of news stories. This one really touched my heart because some people would not have been able to handle all the choices you have had to make in pregnancy and after. When he has his next surgery. We will all be here for you!! No more feeling alone through it! Lots of hugs to you both!! <3 ~Candice Drais

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  12. on the hospitial it sounds like they are unprofessional :( but unfortunately i cant reccomend or say of any or even say i have heard of any that specialize in cleft pallettes :( as far as writing a book? :) i think youd be awesome at it!! :D look into lulu .com! :D the more people that know about christians story the better it will be!! :D nd hopefully...? in time...??? with enough support a cleft pallete center could be opened up.. :) thatd be awesome:D

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  13. Lacey, it sounds like you would definitely feel more comfortable and supported at a different hospital. Is it possible for you to change? Seems like Vanderbilt don't have (or deserve) your confidence. I have found it both a privilege and a joy to read about you and your family. Thank you for sharing your lives with us in this way.

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  14. Hi Lacey. I saw your video on Vitoria de Cristo's blog and loved your beautiful, expressive face telling the story. I felt I would have known the story without the words because of it.

    Our society wants to medicate and operate away all our differences. I am not talking about Christian's many operations, which he needs to function well. I am talking about people not being able to handle differences, resisting being pushed out of their comfort zones, fearing anything that is not exactly like them. So I think you, and moms & dads like you, have undertaken a profound responsibility to show the world that there is nothing to fear about "being different"; the true meaning of "beauty"; what can be accomplished with love.

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  15. Lacey, I wan to thank you for sharing your bundle of joy with us. Our son was born with a sub-mucous cleft palate which included a split uvula. The hard palate was split from the middle straight to the uvula, but you wouldn't have known, unless you shine a flashlight to the roof of his mouth. Anyway, they repaired it and he only has the one uvula.
    I am so happy that Christian is proving his doctors wrong. He has a special soul and he is here to teach us all a lesson.
    Love to you and your family!

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  16. Oh my gosh, I was impressed that you could keep up with all his therapies and then you mentioned working full time, plus going to law school...WOW! Lacey, I have to say you must have the energy of a toddler and the patience of a saint. I truly admire you and look forward to reading more of your blogs. Christian is indeed beautiful inside and out (that giant grin is precious), but you are also beautiful inside and out. Thank you for sharing your blessing with the world!!

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  17. Thank you so much for taking the time to explain to us!! I think, if I were in your position, I would do the same thing concerning Christian & the unnecessary surgeries. I think you are so wise to wait & let him decide for himself. Please post (if possible- I know you have so much going on) whenever he is about to have a new surgery, so we can bind together in prayer for Christian. Praying for him, now, that he would have as few surgeries as possible. Praying for healing. We love your sweet & adorable little guy! May God continue to bless & strengthen you, Christian, & all your family! Kristin

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  18. Lacey,
    My son also has cleft lip and palate, we live in Murfreesboro and have had his surgeries at Vanderbilt also. I am sorry to hear that you are dissatisfied with their care as we have had pretty good experiences both times. I wanted to let you know that we also checked out University of Alabama in Birmingham before we went to vandy. It has a lot better organized "cleft team" but the drive was just not practical for us with vandy so close. Check out dr. John Grant at UAB and see what you think.. Best of luck to you

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  19. Lacey - You're surch a terrific mommy to Christian. I can't even begin to imagine how challenging every day can be trying to schedule all those therapies and work and go to school too. Christian is such a handsome little guy, and I do applaud you for not jumping into the more "cosmetic" surgeries so he can decide on his own when he's older. You're perfectly right: there may be medical advances that will help his vision by then and besides that, he has no way of communicating to you just how much he does depend on the little sight he does have. Even light/dark is an advantage he can learn to use. As always, thank you for sharing your handsome little man with us.

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  20. I have been through the whole content of this blog which is very informative and knowledgeable stuff, So i would like to visit again
    hospital in mumbai

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  21. If you have not read "Crashing Through" by Robert Kurson (Random House 2008), I highly recommend it. Mike May was blinded at age 3, but the things he accomplished are just amazing. While Mike's vision was partially restored when he was in his 40's, the things he did while he was completely blind except for some light perception are beyond imagination. Life for Christian is limitless, and Mike May's story would be a great encouragement, I am sure!

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  22. You have a lot of choices to make as far as the health and possible future surgeries of your darling little boy. I will pray that the Lord guides you in those decisions.

    May the Lord bless you and keep you and also Christian and your husband.

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  23. Great job explaining everything, Lacey! How lucky Christian is to have a Mommy who is such a fighter for him. I heard about your family through the video you made, and it really touched my heart. I too am a mother to a baby boy with "special needs.". In fact, I am posting this comment in the car as we travel home from Shriners Hosptial in Philly (we are from Va). My son has a rare (1 in 10,000) condition called Progressive Infantile Scoliosis ... He was diagnosed at age 4 months, began getting treatment at 16 months, and is well into his treatmeant at 2 years old. I see from this post that you have dealt with some casting with Christian. Jackson's treatment consists of serial plaster torso casting to straighten his very crooked spine! You can read more about it if you like on my blog at www.jackotaco.blogspot.com. Most of the PIS specific blog posts are linked in the upper right corner. You'll see if you read them how much a truly identify with your feelings toward Vanderbilt in my opinions of Shriners! That part of your post really hit home for me! As if these precious kiddos don't have enough to deal with without the medical system messing things up further! Also, I wanted to tell you that I am soooo glad you want more kids. I just had another son on 5/2/12 and I lot of people asked me if I feared PIS when I was pregnant again. Sure, I did. But it isn't known to be genetic and I wanted (lots) more babies! So far our new little one's spine seems straight! Anyways, I just wanted to message you here (I tried on Facebook) to tell you that I am thinking, praying for, and supporting you and Christian on your journey! Keep inspiring others as you already are! And, if you don't mind, may I link your blog to my own to share your journey with the other special needs mommys who follow mine? Best Wishes and God bless!

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  25. I've just come across your story via a friend sharing a photograph on facebook and I just want to express my heartfelt love to you and your family. What an incredible strength you have and I truly wish you all the very best for the future. You have one gorgeous son and he certainly has one cheeky loveable smile!

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  26. Wow...you are amazing and your son is blessed to have you as a mom. I'm so glad I found your blog. I will pray for you and your family. Sending virtual hugs!!!

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  27. Have you ever considered Cincinnati Children's Hospital in Cincinnati? My son stayed there and it was wonderful!! They are passionate about their care for the kids and have world renown doctors. I know it's far from you, but there is a Ronald McDonald House right next door to the hospital.

    You're such a good mommy! God bless you for choosing life and also for being open to more! I have 4 young Children and big families are awesome! If you have any questions about the hospital, I'd live t chat with you. I have a friend who is a nurse there also. Give that precious little boy a hug for me!

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  28. Thank you for sharing so much of yourself and your struggles and your insights. Thank you for being willing to open up yourself and Christian to millions of people. That takes tremendous courage. After reading your post a couple of days ago I meant to ask a few questions. But when I came back up to ask, you had answered many many many of them. Then I thought to ask how Chris was handling all of this as a father... but then I read through all of your posts and realize you have given that a bit of an answer. But am curious...not gory detail curious, how Chris is handling all of this. It is interesting that I have known several families with major child struggles as you have and are experiencing, whose father's have been unable to manage the pressure of fathering a special needs child. And I guess I kind of just wonder why? Or I guess why having a special needs child can tear a marriage apart? I hope this isn't too personal. And if it is, I humbly apologize.

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  29. http://shouldiseeagain.blogspot.com/

    if u know how to get treatment then please contact us

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  30. How is it now with your little, lovely boy and yourself? Big hug and greetings from Holland.

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  31. I wanted to correct something about the speech therapy for other children with Cleft Lips and Palates. My son who is now 5 years old was born with a single cleft lip and his palate was almost a double cleft. He has had one surgery to repair his lip and one to repair his palate. Thankfully so far we have been blessed that he may only need one more surgery in his life which will be on his nose when he is a lot older. We just have to sit and wait and watch as he grows.

    Now as you mentioned children with clefts have to do speech, but it is not to teach them to talk without the sound going through their nose. They have to learn how to talk to know where to place their tongue, how to form their mouth and all of that. My son at 2 years old couldn't talk and called everyone Momma. It was the only sound he could get out (the M sound) and since it was a struggle for people to understand him with any other sounds he refused to talk. He just sat grunted and pointed at what he wanted. They actually thought he was never going to be able to talk and told us to start teaching him some sign language.

    Now he is 5 years old and says a good bit of words, but still is behind on some. We have to work with him and wait and see how it affects him learning to read. I already notice somethings with his ABC learning (he thinks C and D are also E due to the sound he is trying to make so when asked what those two letters are he says E).

    So the speech for other cleft children is the same as for your son. Every child and every child's needs in stuff is different.

    Many blessings and may your family continue to thrive. :)

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  32. Thanks for a nice share you have given to us with such an large collection of information. Great work you have done by sharing them to all. simply superb.look at this also Neomed Hospital

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  33. You are a great mother and God knew you could care and love Christian the way he needs. After reading your blog and watching Christian on FB I can't bare the thought of replacing his eyes with fake ones. Please please leave his eyes I cry when I think about him being in the dark forever!!! God bless You, Chris, and Christian!!!

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