Christian Taylor Buchanan

Christian Taylor Buchanan

Thursday, July 5, 2012

New Hospital

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 look like an infection to them, but that I needed to follow up with his plastic surgeon just to be sure. The plastic surgeon wanted to do a CT just to be sure, because we needed to know FOR SURE if there was an infection there. So we went back for a CT scan a few weeks later. I never got a call to let me know the results, so I began calling and e-mailing as soon as I knew the results would be in. They were pretty rude about me asking to know the results of the CT, but I persisted. The receptionist finally told me that there wasn't an infection, but that the doctor was concerned about fusion of the skull so we needed to come back in.

We went back in a few weeks later and the plastic surgeon informed us that on the CT it looked like some of the plates in Christians skull, namely those next to the absent skull, were closing too early, a condition known as craniosynostosis. He said that when the plates fused too early, they caused introcranial pressure that can cause brain damage if left untreated. Eventually Christian's skull would start growing in a funny shape. The treatment would be a 7 to 9 hour surgery where the plastic surgeon and a neurosurgeon would cut open Christian's skull, remove a piece from his ear to the top of his head, to his eye socket, and reattach it with metal screws and wires.

I literally almost fainted. Christian's nurse ran over and grabbed Christian out of my arms and the doctor jumped up to grab me as I was falling backwards. He asked if I was ok, and for a minute I couldn't even speak. I finally started asking some questions, but wasn't really sure what to say. The doctor then told me that he wasn't sure just yet that this is craniosynostosis and he just wanted to keep an eye on it for now. He also explained to me that craniosynotosis is a fairly rare birth defect that was unrelated to Christian's cleft. Immediate red flags started flying in my head. I just could not believe that Christian had a birth defect that only 50 people in the world had AND another non-related birth defect that was also fairly rare.

I started doing my own research on the matter and found out that one way that doctors find and diagnose Craniosynotosis is to look at a growth chart of the child's skull over time. If it wasn't growing, or not growing on the normal curve, that indicated craniosyntosis. I called Christian's pediatrician and asked for a copy of his head growth chart. At every well baby visit they had measured his head and I knew that it had always measured normally. Sure enough, when I got the paper, Christian's head growth was perfectly normal. Another red flag

Two months later, we went back to the plastic surgeon to check on the craniosynostosis thing. The doctor walked in the room, glanced at the CT scan we had done 2 months ago, ran his hand across Christian's head and in less then 2 minutes in the exam room, he says "Yes, it's craniosynotosis. We're going to have to do the surgery." He began to tell me where to go to schedule the surgery after I left the exam room. Again, I was stammering and stuttering, but not so close to passing out this time. I told the doctor that I needed more time to think things over. He agreed, but warned me that this surgery had to be done by the time Christian was a year old. He also never asked for Christian's head growth chart, and I didn't offer it to him because I wanted to test him and see what he would do. By this time, there were so many things that just didn't add up, that I knew I couldn't let Christian have the surgery until I knew more.

I immediately started looking for a doctor outside of the  network to get a second opinion. I finally found a group of doctors at UT Medical Group in Memphis, Tennessee who hold a craniofacial clinic once a month. We were placed on the schedule for the October Clinic to get a second opinion.

Christian was a trooper on the 3 1/2 hour car ride. We only stopped once to feed him and grab us some breakfast, and he never complained the whole way. When we finally got there, we were some of the first people to be called back. A group of doctors (5 if I remember correctly) came in, looked over Christian's medical records, took pictures of him, asked us a lot of questions, and made a determination that Christian did not have craniosynotosis and said that "Under no circumstances would I suggest that you allow him to have the surgery." The doctors also said that they knew Christian's plastic surgeon, and that they had no idea why he would diagnose Christian with this birth defect.

That day felt like a 5,000 pound load lifted off my shoulders! I had been so worried and scared that Christian was going to have to endure such a painful and residual surgery for the last 3 or 4 months. It felt amazing to have that worry lifted.

But, that visit created a new problem. We went back to our plastic surgeon and told him what we had found out, and although he said that he disagreed with the UT Medical Group findings, and that Christian still needed the skull surgery, he didn't push the craniosynotosis surgery any further. This left me with a deep mistrust for that doctor. He had always been one of the nicer doctors that we had, and he had done a miracle with Christian in his lip repair surgery, but still, my gut was telling me that I could not let this doctor work on Christian anymore.

So, that's just some more insight into the deep mistrust and dislike I have for Children's hospital. I learned fast as a mother to trust my instinct when it came to Christian. When orthopedics broke Christian's leg, I argued with them for an entire appointment about it. They assured me that his leg was not broken, but I didn't let it go until they did an X-Ray. Low and behold, Christian had a fracture in his tibia near his knee.

So, now, I have spent the last 6 months researching and setting up consultation appointments with new hospitals, all out of state, to try to find Christian the absolute best care possible, with doctors who will treat him as if he is their own child when he is under anesthesia and the knife. Christian is still facing 20, 30, maybe even 40 or 50 surgeries in his lifetime, and I want a doctor who is going to do the VERY BEST job possible with absolutely nothing being done unnecessarily and no mistakes being made. Christian can't afford unnecessary surgery or mistakes, and he definitely doesn't deserve it.

Right now, we are looking into two hospitals in Ohio, Shriner's and Nationwide Children's Hospital. We have consultation appointments scheduled for August 27th and 28th as of right now. This is about a 7 to 9 hour drive. We have also begun looking into Milton Hershey in Pennsylvania, although I haven't yet contacted anyone there. I am researching and looking into every possibility for which hospital to go to.

My criteria are simple and I don't think Christian deserves any less. I want doctors who care about my son, and don't see him as just another surgery, another day on the job., who are extremely skilled in their profession. Who take the time to listen to me and take into consideration my feelings on procedures and Christian's care. I want a hospital I can trust to do what is best for my son and my family, and who doesn't make a stressful and painful situation worse or use Christian as a Guinea pig or a paycheck.


Although Christian's insurance covers almost everything that we have done in Tennessee, it covers zero out of state medical costs. But there is no way that I will sacrifice the best care possible for Christian, no matter what it costs us. Where ever we choose to move Christian's care, his insurance is not going to cover any of it. But that is not even a consideration in this. What matters most is Christian and getting him the absolute best care possible.

Photo of a child with the type of craniosynotosis that Christian's doctor said he had. The doctor said that Christian's forehead would eventually begin jutting out like this.

This is Christian at 3 months old, days after his cleft lip repair.  I cannot imagine putting him through this unnecessarily. 
I hope you guys enjoyed this post and that it let you into a little more into our lives! I have added a photo of a child with craniosynotosis  (above) just so you can have an idea of what I've been talking about. I just got the image from Google.


58 comments:

  1. I totally support your following your gut, asking questions, and getting the best possible care for your son. You are an amazing mom!

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  2. I believe we are all given trial that we have to pass through in out lives. Christian's beautiful little soul was sent to you for the only thing that I really understood in this blog (I did read everything, and I understood everything but the only thing I heard loud and clear) was that this little baby will get nothing but the best you can find for him. He's going to need so many surgeries, and my heart and prayers are with him, as well as you & your family... But to read a fellow mother's love is so uplifting. You are so strong, and I know it's purely for the love of that wonderful little boy of yours. <3
    God Bless

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  3. ur such a brave young women. i admire you so much :) hope all goes well for u and ur son & i hope you find a wonderful hospital for ur son. :)

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  4. I have been following you and your story on Face book and so amazed how strong you are. Your little boy is so beautiful and you should be very proud as a mother for what you have done. Christian is such a trooper :) Hope to hear more in the future. Tracey

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  5. God chose you to be Christian's mom because He knew He could trust you to take excellant care of him!! You are an amazing and inspiring mother! May God bless your family and the doctors that will be providing Christian's care in the future!!

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  6. You are such a brave and strong Mama. I can only imagine how incredibly stressful it must have been to live under the weight of the idea that he would need major cranial surgery for so long. That must have been such a profound relief. My daughter is in kidney failure and we've spent the last 18 months just waiting to receive the word that she has to have yet another surgery to try and resect the kidney -that has been profoundly stressful and, frankly, it is nothing in comparison to what you are going through on a daily basis. We will pray for you for strength, wisdom, and peace and for comfort and joy for Christian. God is good and faithful, he is bigger and stronger than all this (although sometimes I have to remind myself of that!). Regarding your insurance... it may be possible to petition your carrier to extend in network benefits to your out of network hospitals owing to his specialty condition coupled with the SERIOUS malpractice & poor care concerns that you've encountered with Vanderbilt. If you can demonstrate that appropriate care is not available in network then you may have a case for extension of coverage.

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  7. Good job going with your gut! It's so easy to think that they are the professionals so they should know and just blindly follow what the doctors say. God knew exactly what he was doing when he gave you Christian!

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  8. From the day i watched your video i have been wantin to know more about how he was. i found your facebook and blog today. i have been truly blessed reading this. Prayers will continue going out for you Christian and your family.

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  9. I don't know about Hersey's but I doknow that Shriners does an excilant job with childern with special needs. I had a foster son that has Rubinstien-Tabies syndrom and needed surgury on his legs. They had us do a complete tour of the facility as well as meet all the staff. The Shriner's help cover cost by sponsors and I can never thank them enough for the caring and professional way My foster son was treated. I keep your family in my prayers and hope you find the answers you are looking for.

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  10. Wish you dont say " I hope you enjoyed this post". It is much more deeper Feeling than enjoyment,

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  11. Hi, Lacey! I have been following Christians story since the touching youtube video was shared on facebook. I would just like to add a hospital to your list to look into. Pittsburgh Childrens Hospital in Pittsburgh PA. My son has recieved excellent care there, as well as dozens of friends and relatives. Iv never heard a bad thing about them!

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  12. God Bless baby Christian and your family. Keeping you all in my thoughts and prayers. I follow your story on Facebook and you are an amazing Mom and Christian is so beautiful. Always follow your gut instinct with your child. I do and it saved my youngest sons life. God Bless. <3

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  13. Lacey, I can only imagine what you have been through as a mother of a child with special needs. As a former patient of Shriners children hospital in Chicago, I can tell you that t is an excellent choice for hospitals. If you consider them please contact me if you need any help getting a sponsor to get Christian in there. They will cover all costs of medical treatment & have housing accommodations for families that are from out of state. They treat you like family when you are there. I was a patient 24 years ago, they provide excellent care, listen to you & explain everything to you. My prayers are with you & your family. Best of luck deciding Christian's future medically & otherwise. Always go with your mother's instincts they will never fail you.

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  14. I would be furious with that hospital, and there's no way I'd trust them with my child after all that! There HAS to be a way for your insurance to help with a different hospital, no matter where it is....

    For what it's worth: I grew up in Cincinnati, and I've heard nothing but wonderful things about Shriners.

    Big hugs to all of you!!

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  15. Lacy,

    I live in the Columbus area and have used Nationwide Children's. I can't speak for the departments you will need, but we have taken my son to them for several issues and they are top notch. My son had to have a urology surgery when he was a baby and they did a fantastic job. People come from all over the state, and from WV (my home state), to have their children treated there. I never hear anything negative about them. I am a special ed teacher and used to work with kids with profound mental and physical disabilities. Most of those kids used Nationwide Children's also. I'm sure they would give Christian wonderful care. I don't know anything about Shriner's.

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  16. You're a great mom and sounds like you're definitely making the right decisions. Praying for you guys!

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  17. I love you two.
    Be careful and check everything three times before you actually do something. Why would he need extra suffering! Well done!

    HOw is his emtionele development now? Love your son hug? What is his favorite toy?

    Lieve groetjes/ greetings!

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  18. I had some of the very same experience with VCH, I could tell story after story of mis diagnosis which almost, on several occasions cost my son his life simply because they wouldn't listen! They would get mad when I questioned them. It never felt right to me. After 15 months of dealing with them, I took my son to St.Louis Children's hospital. I have never looked back! Their motto is " doing what's right for kids"..I hope you find a place you feel peaceful. I knew when I walked in the doors of stl Children's that I was home. All the "watching" and second guessing everything...it was gone! Praying for direction for you!

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    1. Christi! I know exactly what you mean. They get mad at me every time I question anything they say, as if I don't have the right to! I am so glad you found a good hospital!

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    2. My daughter had many orthopedic problems on her hips and feet due to birth defects. She spent most of her first 3 years in body casts and lots of additional surgeries in following years. We found Shriner's to be kind, deficient, and so incredibly helpful! lacey, you have been given the task of being Christian's advocate...he will never have anyone who fights as fiercely for his care and protection as his Mama. Don't second guess yourself, and realize that to any Dr...this is another case in their day, but it is your LIFE and your son's FUTURE. I have known many palate patients who have had wonderful results at Shriner's. Praying for peace as you transition!!

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    3. Btw: this is Mary at MNCstudio@aol.com
      Not sure why it's posting as anonymous! hugs!

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    4. ...and, that should read EFFICIENT!!! GEEZ :(

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    5. The funny part is their motto is "ASK"!!! You will find the right place!

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  19. Lacey...

    My son's craniofacial surgeon is worth looking into. People come to him from all over the country with their children who have many serious craniofacial defects..his philosophy is to treat his patients like they were his own children.

    http://www.thecraniofacialcenter.org/index.html

    You can even email him directly without being a patient...he WILL reply. He is awesome.

    Best wishes to you on this journey.

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    1. Christian needs money for out of state care for Tessier's Cleft. His normal doctors aren't knowledgeable in this since there are only 50 cases. He also needs a good plastic surgeon which we all know isn't covered. Please give to Christian's fundraiser. http://www.giveforward.com/teamchristian Lacey is too proud to mention it.

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  20. Have you ever considered Johns Hopkins in Baltimore? They are great with children and with peoples needs for there children. I know it may be out of the way, but really..nothing is out of the way for our children. They conduct continuous research on everything including bilateral cleft palate. I know people with personal experience with children that were treated by Johns Hopkins. I had a friend that carried her son, his intestines were growing outside of his stomach. One hospital claimed that they would try to save his life but it would be hard. So for a second opinion they went to the best..Johns Hopkins. They looked at her and said "this is a small problem that we can fix and you have nothing to worry about" and sure enough, he was born..they did surgery and he is 2 years old and it was like nothing ever was wrong. They have a great childrens center..one of the best. Just a food for though in your search.

    Your family is awesome. You guys have such love and I respect you immensely for being such a inspiring mother.

    The love for our children really is like no other. It's an amazing feeling.

    You guys are always in my thoughts through your journey of Christian life.

    Your friend from Baltimore- Jennifer

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  21. I also live in Columbus Ohio and Nationwide children's is amAzing. I'll include my email if I cando anything to help. Praying for you and your beautiful son.

    mama2camandcassi@gmail.com

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  22. Follow your gut! we have some amazing hospitals here in Boston!

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  23. I live in Northern KY just across the riv er from Cincinnati Children's and Shriners. For any reason if you decide on Cincinnati (they have been amazing to us!) please know you can stay with us until the Ronald McDonald house can set you up.

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  24. Bravo for being brave enough to challenge the doctors when you feel it is necessary! I have had wonderful experiences with Hershey, which is an hour from my house and personally know a pediatric nurse there as well. If you would like, you can contact me directly with questions about the area, patient referrals (I know several of them too) or to speak with my friend who is a pediatric nurse there. My email is dnhanlin@gmail.com and through that I can share my contact information. Good luck!!!

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  25. Call it a personal bias, but I would recommend Shriner's Hopital. It's because of the Shriners that I am able to walk today. I was born crippled, and my parents could not afford the treatment to correct my legs. The pediatrician got us on scholarship - and I underwent two years of correctional treatment that I thank God for everyday! Had it not been for God's will and their kindness I would have grown up in a wheelchair. Best of luck and prayers for you, Christian and your family!!

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  26. I know someone who has a child with cancer and repeatedly has to go to Vandy. She is very unhappy with the care there.

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  28. Christian needs money for out of state care for Tessier's Cleft. His normal doctors aren't knowledgeable in this since there are only 50 cases. He also needs a good plastic surgeon which we all know isn't covered. Please give to Christian's fundraiser. http://www.giveforward.com/teamchristian Lacey is too proud to mention it.

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  29. Hi my name is Sarina I come from California. My sister in law wasn't surpose to live she's 8 now she had surgery in la children's hospital. It's the number on hospital in California we also have an other one called Lima Linda. But la is better their nice people. I no its far fom u but if u really want the best u should research it and let me no what u think

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  30. Lacey,

    My brother was born with cleft lip/palate, and a very rare syndrome (they hadnt named it yet when he was born, and thought for sure he wouldn't make it a day, let alone the 27 years he has now). My parents were young like you when he was born, and took him to Childrens Hospital of Philadelphia (CHOP) - they took great care of them and he lived there for 6 months! his old doctors still remember our family when we go for visits to this day, and truly care and made sure my brother was treated to the best of their ability!! (They were out of state for us too - with little to no insurance and ways were found!!). Check it out!

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  31. So sorry for all you've had to go through with that hospital. That is really despicable. How they could try to take advantage of your situation & also be so callous is beyond me, to say the least. I wonder if there might be grounds for a lawsuit? Anyway, Christian is in my prayers, regularly. We love him & all your family- you feel like extended family! Thank you for taking the time to send a thank you note to us. We have precious Christian's picture up on our refrigerator. Praying you find just the right skilled, experienced, & caring physicians for Christian! Love & Blessings! :) Kristin

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  32. Also, will post Christian's fundraiser info on my FaceBook page!

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  33. My son was treated at Shriner's Hospital in Shreveport La. We were very pleased with the care he received. The brace and orthotic department was amazing, as were the child life specialists. The place was so child friendly. My son was upset when he was finished with treatment.

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  34. One of the other 49 recorded cases our Danika is in the vey best of hands in Australia by the Royal Melbourne Childrens Hospital and I enjoy reading about your journey and would love to share ours with you. Lea

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  35. Nationwide Children's Hospital is very good. I used to live in Columbus and my mother was actually an RN at this very hospital for over 10 years. I had 4 surgeries myself as a child there and they were spectacular every time. I should mention that this was before Nationwide became their sponsor but I highly doubt the care has changed. They always had neat little touches that regular/adult hospitals don't.

    Another hospital to consider is Rainbow Babies in Cleveland. A quick search of their website pops up more than 12 plastic surgeons. I also found out that they have a whole center dedicated specifically to craniofacial treatments/surgeries and cleft lip/palate. Here's the link to their center: http://www.uhhospitals.org/rainbow/services/plastic-and-reconstructive-surgery/cleft-and-craniofacial-center

    Best of luck to you and your darling baby. :)

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  36. I do not know if I would have the strength you have. Bless you and your family.

    Not sure how far you can travel but here in Syracuse we have the Upstate Golisano Children's Hospital. People have traveled from all over to bring their children there. http://www.upstate.edu/gch/ I've heard only positive about them. Wherever you go, I hope you get the help Christian deserves.

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  37. Lacey, i have always believed that moms are in the trenches with their kids and they know their own child better than anyone. You have done a fabulous job with Christian and for him. You are a terrific mom!!

    Have you considered the International Craniofacial Institute? It's was founded by Kenneth Saylers. The link is http://www.craniofacial.net/. You can read about Dr Dr. Saylers http://www.kennethesalyermd.com/.

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  38. Lacey!
    I just read this post, and I am SO SORRY that you have encountered such enormous issues at Vandy. I am the mom blogger who did a post about Christian on my blog at: www.jackotaco.blogspot.com ... my son Jackson has Progressive Infantile Scoliosis and is treated at Shriner's in Philly, PA. THAT is why I am writing you! I'm not sure which Shriner's hospital you are considering taking Christian to ... but if it IS the Philly Shriners ... I IMPLORE, IMPLORE, IMPLORE you to reconsider unless it is 100% a last resort/only play for a specific treatment.

    We have been INCREDIBLE dissatisfied with their care and have had some very similar things happen to our son as you have at Vandy. They have allowed Jackson's ET tube to fall out during surgery leading to artificial ventilation and they have actually applied his cast INCORRECTLY causing him to have the surgery done TWICE in one day! There have also been multiple administrative and nursing errors. We only go there because Shriner's is pretty much the only hospital that does the type of casting Jackson needs ... and we are even considering switching his care to a different Shriners in the very near future.

    I am 100% certain I am NOT the only Shriner's Philadelphia mother who has had issues of this type per the founder of ISOP. If it is a different Shriner's hospital other than Philly ... go for it! The ISOP founder has told me that all the other Shriner's are WONDERFUL ... but Philly is the unfortunate exception to that rule.

    I really do not intend to be negative, but I've been following Christian's journey ... and I understand to a small degree what you are going through. I just want to share my experiences at Shriner's Philly with you in hopes that it may save you some heartache/troubles. Feel free to contact me if you have ANY questions!

    Best wishes always!
    Love,
    Jen

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  39. Lacey,

    You are a truly amazing mother and woman for having the love and strength you do! I've never heard of your story until tonight and it is such an amazing one!

    I know everyone and their brother is suggesting hospitals, but have you looked into University of Iowa Children's Hospital? They are amazing there, working miracles everyday! There is a Ronald McDonald house right there for you to stay in, and I can't be positive as it has been so long, but I believe they help out in cases where little or no coverage is provided by your insurance. Again, I'm not sure on that issue, but I do know it's an awesome place.

    I wish you all the best and hope you find a new doctor who cares about Christian and respects your opinion like they should.

    Nicole

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  40. My youngest sister (7) is a Shriner's kid. She sees the doctor in Tampa, FL for orthopedic issues. If the place in Ohio is anything like the Tampa location, Christian will be well taken care of! Their primary focus there is the children they care for.

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  41. We live in Columbus, and have had many good dealings with the Nationwide Children's hospital. I hope you find the hospital that is right for your family.

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  42. Have you considered Duke Children's Hospital in North Carolina? It has a wonderful reputation; or Chapel Hill Children's Hospital it also is very reputable and is affiliated with the Ronald McDonald Assoc. for families with extended stays.

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  43. I live in Cincinnati, where Shriner's is located. If you do decide to use them, and you ever need anything, please let me know! Myself and one of my close friends have been following your story and would love to help in any way possible!

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  44. You are SO right to do what you've done. I just posted a different comment as the mother of a bipolar child, and let me tell you, I've done my share of second guessing the doctors! Kudos to you for having the courage of your conviction and not being intimidated by these doctors! There are some wonderful doctors and there are some not so wonderful doctors. My child and I had to go through several doctors who told me there was nothing they could do for my child, before I found one who truly gave us options. I LEARNED: ALWAYS LISTEN TO YOUR GUT, no matter how silly it might sound at the time. Mother knows best.

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  45. Lacey,
    Have you looked into the University of Alabama at Birmingam. I had a childhood friend (when I lived in N. Alabama) who had a traumatic brain injury from a fall for a bike. I know that, BACK THEN, they did a great job with him over the years. AND I had a chronic condition that is almost completley cured (I'd have to have major surgery to get rid of it completley) but Wake Forest Med. found a way around it. They even have their own Pediatric ER that is rated one of the best in the country. They've saved a friend's baby's (asthma) life TWICE. Just suggestion. God is talking through that gut feeling. Keep listening
    Hilary

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  46. I've had excellent success at Mayo Clinic in Rochester, MN, who were willing to repair my kidney reflux when no other doctor would. I've also had friends whose children have had great experiences at Abbot Northwestern (MN) and at the U of Minnesota (I'm told they're especially good with rare and/or experimental surgeries).

    Best of luck! Feel free to write me if you have any questions, or need help getting around in the Frozen Tundra (I'm about an hour east of Minneapolis in western WI).

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  47. Praying for you and your sweet boy! We travel from Alabama to Children's Hospital Boston for our daughter's care. She was born with incomplete asymmetrical bilateral cleft lip and left gumline cleft. We couldn't be more pleased with the care my daughter has received. Please email me if you would like the email address to our plastic surgeon nolaew@yahoo.com

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  48. My son also has cranio, he had his surgery almost a year ago. we were able to do endoscopic surgery at 3 months old. I hope you are able to find a craniofacial team you are comfortable with. I am thinking of you and Christian.

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  49. Hi Lacey,
    I would like to get in touch with you to discuss Christian's journey. Our child is diagnosed with Tessier cleft and I needed support!
    shazia925@gmail.com

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