November 8, 2012

Bye Bye Hirschsprung's --- Hello Autism

It has been quite a while since I have posted anything. Of course that means our Hirschsprungs journey is still in off mode...No problems, no issues, just a lot of trips to the potty but that is nothing to complain about considering what we have been through. To bring us up to date, Dylan is now in full blown autism mode, he is 6 years old now and in his second year of Kindergarten. Instead of struggling with bowel infections, rectal irrigations, diets, medicines, we now struggle with sensory issues, behavioral problems, developmental delays, social delays, speech delays, which all of course affects his education and ability to learn. I must say after fighting hirschsprungs disease for 4 years I thought we were done battling but now we battle this daily. At least his health is no longer compromised, he is healthy and I thank God for that. We will fight and battle this just as we have battled everything else. The most important thing to me is having Dylan live life with a smile on his face, for him to have joy in his heart and to find a way to bring him out of himself, open his mind and let the real him shine through. I am hoping to start a blog about our autism journey, autism affects so many families, almost every family these days so I look forward to giving more inspiration and hope with autism just as I hope I have offered some of you with our story of hirschsprungs. Best wishes to all of you!

October 22, 2010

This ugly thing called Hirschsprungs....its sneaky....

I may not be a doctor, a surgeon, a nurse, or even a scientist...but it doesn't take a genuis to figure some things out. This thing called Hirschsprung's, well it is difficult, a real scary thing at first. Any parent with an HD child knows the first year of Hirschsprungs is the hardest, gradually things get better, then there are back sets as well. With everything Dylan has been through the toughest by far is the surgeries of course, irrigations (who would like those?), and there is bowel obstructions/enterocolitis symptoms. Dylan has done so well since early spring. He has had 1 tummy bug since then (and since preschool started)....But today the ugly Hirschsprungs has showed itself again....Dylan became sick the other day, not "gut" related sick, just sick--like a cold virus/allergies...coughing, sneezing, runny nose and a bit of a fever...As if that weren't enough for him to have to deal with, I woke up this morning to a "mud puddle" on the sofa, any Hirschsprung parent will probably know what I mean by that...My little guy standing beside of the sofa crying his little heart out because he was soaked with watery poo. As I said, this HD thing can be ugly....So here we are today with a nasty cold, and smelly, watery diareaha...Thank you Hirschsprungs for testing my strength. Things are getting better slowly today and Dylan is finally starting to drink a little bit of fluids, and as usual since not eating much for the last few days my little guy looks so skinny....The moral to the story you ask? Hirschsprungs never completely goes away, just when you think things are looking up, it sneaks back in with either a tummy bug or a cold virus....But you know what, we will get through it time and time again, and forget about it a little while longer before it happens yet again....But I can say we are blessed compared to some. Never lose hope, to all those out there trying to keep your HD children healthy, there will always be times when HD seems to get the best of you, or seems to always cause problems, but just remember stay positive things are always going to get better and they will hopefully never be as bad as the previous years....Never give up and know tomorrow is another day, and possibly a healthy HD symptom free one!

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....

June 15, 2010

So Far, So good...Potty Training is finished.




I am more than happy to report that potty training is officially over for Dylan. He has done rather well since his 4th birthday and things continue to be fine. We are still giving him a daily fiber supplement, and have decreased the laxative to a "need to" basis. His last episode of being backed up and sick was in April and I can honestly say that I have felt so relieved that he hasn't had anymore of these episodes. What seems to help him, is the laxative. If he goes a day with slower bowel activity such as only going once a day or just a little bit at a time that is usually a sign that he can use a laxative to help get things moving and back to normal. Usually this does the trick, giving him the laxative daily was causing him to go constantly and have diareaha which as you know can be difficult to control while potty training.

We finally got to see how Dylan would do away from home being toilet trained. We had a family get away for a weekend and went camping...I had no idea how Dylan would do, each camp ground had a bathroom between camp sites and I was afraid he wouldn't make it in time and would have accidents. Luckily though, things went well and he didn't have any accidents. It just took him forever to go, I guess it was a different bathroom and a public like place and wasn't home so it took him a while to get use to using a different toilet (after a can of lysol and tons of lysol wipes I might add). Over all it was a good experience and showed me that Dylan will do well in different environments as far as using toilets when away from home..This brings us up to date with our Hirschsprungs Journey...things seem to be ok and hopefully will continue this way. Next step is preschool in August. I look forward to blogging more then about our experience with HD and preschool....

May 6, 2010

Hirschsprung's Disease Awareness and Fundraisers

Ok Hirschsprungs parents....I was ready to make a closing post and call it quits with blogging since Dylan has done soo well with potty training and it feels that our Hirschsprungs Journey has finally come to an end. But this has been a big part of our lives for 4 years now, we have battled, cried, and grieved through this long process until finally we have a reason to smile, laugh, rejoice and be happy. I am more than thankful that our journey has finally took a drastic turn for the better, but I can't forget about those children who are still struggling and still traveling the path we once traveled...With that being said I would like to come up with some ways to raise awareness for Hirschsprung's Disease but also fundraise for a good cause such as Cincinnati Children's Colorectal Center. If you have any thoughts or suggestions please feel free to comment below. Our Hirschsprung's journey may be over but I would love to be able to give back and also raise awareness.

April 18, 2010

We have accomplished our biggest Hirschsprung's Milestone!



I officially have a potty trained 4 year old little boy....I must confess I could not be any prouder!!!! Dylan has done really well with the laxative and fiber supplement, this is helping him go twice a day. He has done so well, and seems to be so proud of himself too. He likes his big boy underwear!!! Dylan has been potty training for 11 days, although we had that one episode of a blockage when we first started once we go that cleared, things became more regular thanks to the laxative and fiber supplement. He had a few accidents in the beginning but after the 3 or 4 day mark he did quite well. Our only problem is that Dylan seems to "hold" it...I find him crossing his legs and basically have to drag him to the toilet at times. But he is doing excellent and I honestly didn't expect things to go as good as they have. I am so very thankful!!!!!!!

He seems to be so proud of himself every time he gets on the toilet to go, when hes finished he has the biggest smile and of course he likes to see MOMMY be proud of him and tell him what a good job he's done ....I am truly blessed!!!! Hopefully this is the light at the end of the tunnel with our Hirschsprung's Disease journey, although I know things will creep up later, and he will probably still have minor issues with his intestines, but over all I think he has conquered his Hirschsprungs Disease battle and has showed it, HE IS THE BOSS....Prayers to all of you who are still struggling with HD and potty training. And to those who haven't started potty training, please use Dylan's story for inspiration and hope and know that nothing is impossible and things do get better. Dylan has had a rough 4 years, but to see him come this far and accomplish potty training has been so worth the wait. My heart is filled with compassion for all of you going down this same road...May God bless you and help you on your Hirschsprung Journey...

April 13, 2010

"Fiber Choice" The perfect fiber supplement that kids will actually eat!




I haven't researched this product, so I am not sure if many physicians recommend this or not but Dylan seems to love it and it he could sure use more fiber in his diet. Since trying potty training lately, I thought more fiber in the diet would help bulk up the stool or loosen it if needed. Fiber usually helps regulate the bowels. This fiber supplement is a tablet and is made in fruity flavors which makes it easy for kids to actually take without having to put up a fight like other bad tasting medicine or supplements.

This is offered at most drug stores and probably available at Wal-Mart as well. I found a small traveling tube size like they make the glucose tablets, for $2.25 at our local Dollar General Store. The big containers are $14.99 which is a reasonable price for a bigger amount. Just wanted to share this information in case anyone else is trying to get more fiber into their kids diet.