September 5, 2010

Yet another journey begins....



Dylan has accomplished alot of goals this year, the most important being toilet training and preschool. He started school at the beginning of August and he loves it and looks forward to going every morning. This was a big deal for me because I thought it would be so hard, that he wouldn't like it, he would cry...but I was stunned to see the exact opposite.

In early blog posts I have mentioned Dylan changing after surgery, changing meaning his demeanor, his attitude, his emotions, his development---just everything in general. Looking back I have realized that I have always known there was an issue there...The older he gets the more noticeable it has gotten, first I thought it was something he would "grow" out of, but then I saw him regress instead of progress...things have slowed down, and at age 4 I can see a big difference between him and other kids his age, I can even see a big difference in him and his younger brother. Dylan showed signs of "sensory issues" as early as age 2, but at that age its really hard to tell if there is something there worth worrying about...especially when he was battling such a rare bowel disorder like Hirschsprungs that was causing him to be sick and fight for his life.....

Now with confirmation from a developmental specialist, one of my fears has been "brought to life"...Dylan was diagnosed as having "Autism Spectrum Disorder". There are alot of sequence of events thats taken place, gave us suspicions and gave us clues, so we made the decision to have him see a developmental/behavior specialist last week. Now with a diagnosis its time to look into options for therapy, things for me to do at home with him, and just daily teaching stuff to help him succeed in life and bring out the intelligence that we know is in his brain but that he has such a hard time getting out....With great therapies and a daily structured routine Dylan will live a normal life, its up to us to give him that though....Its sad to see him have such a rough time, but it helps me know that my gut was right all along, and now just maybe I can get him some professional help instead of second guessing myself as far as coming up with ideas....This is going to be a difficult journey, but we have made it through hirschsprungs so I feel like we can make it through anything....But now at least the health and medical issues are out of the way so we can concentrate on the Autism and how to help our special boy.

As they say, God never gives you any more than you can handle, so we will look at this as another learning experience and do whatever we can to help Dylan succeed in life...It may not be easy, but no goal worth reaching is...everything in life takes hard work and dedication but in the end, it will all be worth it....

3 comments:

  1. My thoughts and prayers are with your family!

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  2. Catrina- My name is Stephanie and I have a 5 year old son who is going through the same thing Dylan is. His doctor just said she wanted my son tested for Autism as well. He has gone through some of the same things your son has gone through, especially the loose stools. We still haven't figured out a correct way to help him, but we are trying everything including the Benefiber and Metemucil (sp?)... nothing has helped him have a solid stool yet. Have you every heard of a blotchy HD? My boyfriend also had HD when he was little and is now a healthy 30 year old but went through a lot when he was younger. The point that I was trying to get at was that he had blotchy HD and had to have numerous parts of his colon and intestine removed. Instead of having a colostomy like my son had, he had an illeostomy. I am just wondering how you get a doctor to listen to you. We have seen numerous doctors and no one has been able to help us let alone listen to us. Any suggestions??...

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  3. Stephanie, with Dylan's issues it just became so bad that he was getting obstructions a few times a month. When he did this, he would throw up and not eat for several days at a time, it took several of these episodes (and each time the episodes became more severe) until finally his surgeon listened to me, put him in the hospital and ran some tests....He was to the point of throwing up and not even holding down liquids for a week straight when his surgeon sent us to cincinnati colorectal center. Thats where more tests were done and they determined Dylan needed another pull-thru. The most important advice I can give to other parents who are still struggling is if you feel in your gut that something still isn't right, ask for test to prove that your gut is wrong. I know none of the test they do is pleasant but in the long run its needed if they aren't doing well. Another thing to try for "loose stool" is fiber and probiotics. Dr. Levitt from Cincinnati recommends fruit pectin. If there is anything I can ever help you with please don't hesitate to get in touch with me. Good luck with the autism as well, its a whole other battle but at least your don't feel like your fighting for his health with that one, I just fight every day to make sure Dylan learns and can be the best he can be....Im so proud of him whether he is autistic or not, and the fact that he has fought the HD battle and won makes him that much more special to me....Best wishes to you and your family...I hope things get better for you!

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