December 14, 2008

Update: Dylan's hanging in there, waiting on surgery

Yesterday was a week since we came home from the hospital, the irrigations are torture but are helping Dylan so much. He is back to his normal weight of 36 lbs (he was a little over 40 when he was sick, probably from the stool backed up for so long). Ive come to realize the irrigations arent so bad as long as I can keep him occupied with something else, and I know its needed so I just have to put on my brave face and talk positive to him. He is truly a big boy, and hes being so brave and happy considering the problems hes had.

Other than that we are preparing for the holidays, the kids are getting really excited for Christmas. And I know "Santa" is gonna bring some good gifts and Dylan will get to take some of them with him to occupy him while hes in the hospital. So as of right now, we are 21 days away from heading out to Cincinnati.....nervous of course, but hoping everything continues to go smooth until then.

Best wishes to you all!

3 comments:

  1. Hi!!! My name is Terry Johnson, My son was born with HD too. He is 7 now. He went through many surgeries too. He had entercolitis several times too. I just wanted you to know if you ever need to talk to someone who has been through it please feel free to e-mail me. It is so frustrating, I remeber feeling very alone because no one I knew had went through this.I am a stay at home mom too. I hope Dylan is feeling better soon. Take care... Terry Johnson @ dtj@srt.com

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  2. Hi, I have an eight year old daughter almost 9 in a couple of weeks. Well, she was born with pyloric stenosis and had surgery when she was 3 months old. Then recently in April we started with severe constipation where she was hospitalized and has always had stomach distention and I have not had a Dr. listen to me about my concerns. Just switched Dr.'s again and they have us go to a Pediatric Surgeon to have the biopsy done for Hirschsprung's disease. I am a bag of nerves but know that something has to be done. The poor kid has always been sick a lot and doesn't have normal energy (for a kid her age) she has been much better since we have been on a gluten free diet and eat only organics and a lot of raw fruits and veggies and only grass fed pastured meat but her distention is terrible. I am a mess and I know she is nervous about all of this but she too just wants to feel better. Any suggestions on how to handle all of this..

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  3. My only suggestion going into this is to make sure you find a professional that knows the in and outs of Hirschsprung's and how to treat it. I have to mention too, that hirschsprungs disease usually shows symptoms right after birth, a child can go years without being diagnosed but usually there is always a problem of chronic constipation or even bowel obstruction until the diagnosis is made. The most important thing is to explain to your daughter at this point (since you both are nervous Im sure) is that sometimes these tests are nescessary to get answers, and in the long run these answers are going to make it possible to get the treatment she may need to make her feel better. I hope everything goes smoothly, and I hope its not hirschpsrungs...hopefully something that can be treated easily and make your daughter feel much better soon. Research a little more about Hirschpsrungs Disease. And if all else fails, contact the Cincinnati Childrens Hospital...they have a Childrens Colorectal Center and are the best in the field.

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