Leading the Blind

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...

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...

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 ...

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 cr...

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 ...

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, c...

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 Christ...