My 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.

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Jennifer Yocham posted a new journal entry, "stuck".

The subject fits perfect. I feel stuck. Stuck in limbo not knowing what the next move is. This post is not so much about chandler as he is doing great and right now is ... Read more

Jennifer Yocham posted a new journal entry, "getting there!".

Hey all! We have put the deposit down on the dog and were assigned to a red fox lab named cinnamon! She's precious. She is starting her training and will be ready in ... Read more

Jennifer Yocham added a new photo.

Jennifer Yocham posted a new journal entry, "happy news".

Hey everyone! We were able to get the down payment on the dog!!!!! He is now matched with a red fox female lab! We won't get her until march as her training is extensive. ... Read more

Jennifer Yocham added a new photo.

Jennifer Yocham posted a new journal entry, "update".

Hey all! Things are going pretty good here. Chandler had an amazing 7th birthday and is in love with his fly "asalt" gun. It uses salt and actually kills flies and he's ... Read more

The Kleins signed Chandler's Guestbook.

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah ... Read more

Jennifer Yocham posted a new journal entry, "fundraiser".

Chandler is doing great. Seizures are slowing down so it seems the meds are taking effect. Poor kallie got bit by something on her foot and it swelled up huge. Antibiotics ... Read more

Jennifer Yocham posted a new journal entry, "not a good week".

It has been an awful week! Chandler has two seizures Tuesday night. We rushed him to the er and they thought it was a virus even though he had NO signs of virus. Got home, ... Read more

Jennifer Yocham posted a new journal entry, "Blog".

As you have seen I have switched over to the blog for updates. You can sign up to get an email anytime we add a post. It is crazybusymom.theblogpress.com  Read more

Jennifer Yocham posted a new journal entry, "update".

I have updated our blog. You can sign up At the bottom to receive emails when a new entry is posted. It is crazybusymom.theblogpress.com No www before. Just type it in as ... Read more

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