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Chandler’s Story

After 3 1/2 years of fighting, we have finally gotten a diagnosis. Chandler was officially diagnosed with shwachman diamond syndrome on august 1, 2011. It has been a huge rollercoaster to get here. We tha kGod that we have an answer and know what we are battling now. Please continue to follow us and pray for Chandler.AT 6 months of age, Chandler was on the charts and looking healthy. By 9 months he had dropped off the charts and was having up to 14 bowel movements a day. Our Pediatrician sent us to see a GI dr. her intial thought was that he had cystic fibrosis. That test was negative. So we started a long road of tests to see what was going on with him. We found out that his pancreatic enzymes are insufficient. So he now gets enzymes supplemented before every meal and snack. They finally ended up putting in a NG tube through his nose to feed him extra calories through. He now has a G-button, which is a port in his stomach where we feed him through. We ended up going to see a speech therapist to ensure that he didn't lose his ability to eat. While we were there, she immediatly said she thought he was aspirating his food. Sure enough, the swallow function test showed this was right. We ened up having to see an Infectious Disease dr and a pulmonologist. He had a broncoscopy and fond he ha MRSA in his lungs. This is very rare and brought up the possiblity that he has Shwachman Diamond Syndrome, a bone marrow failure disease. I have been in contact with a Dr in Cincinnati, OH and we will be going to see those doctors November 20th and will find out for sure whether or not Chandler has SDS. Since the beginning they have found that he is anemic as well as has asthma. In September of 2009 Chandler fell and hit his head and on the CT scan it showed he had a rare malformation of his brain stem called a Chiari 1 Malformation. After that he started passing out and they are trying to figure out if they are seizures or if it is an issue with his heart. 

We found out that Chandlers spells were because of his Chiari. He had a decompression brain surgery in November of 2009. We will go back in November of this year to decide if he needs another surgery. We are awaiting a muscle biopsy along with other tests to decide if he has a mitohondrial disease. We went to Cincinnati in November of 09 and found out that Chandler has a bone marrow failure disease. Which one, we still do not know. We appreciate your prayers throughout this long and difficult proces. Please keep our little boy in your prayers.

Latest Journal Update

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Well bean was to have an MRI tomorrow, but with snow days I called to discuss moving it only to realize they had made a mistake and it was only for C-spine instead of brain and C-spine. It is time for his brain MRI checkup so there is no need to put him under twice and the C-spine mri is two hours less than what it takes for both areas, so now we reschedule and that will put us at about two months even further out.....boo! But at least it saves him being under anesthesia more than once this time and will get us on the same schedule for the MRI's....on another note, this weekend starts Allstar tournaments for basketball. Both chandler and kaydence made Allstars and are super excited for this weekend. I am so proud of them and looking forward to this weekend. We are finally into a routine with me starting my new job as a nutritionist and things are going pretty good! I'll let you know when we get the MRI rescheduled for so you guys can do what you do so well....pray! Pray for good results and that the syrinxs have maintained their size or even better, decreased so we don't need another surgery! :) have a great week!