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.

Laxatives and Fiber is the key to our Potty Training Success

Dylan has done pretty well with understanding the concept of toilet training. During the first day of potty training he did poop in the potty a few times but started showing serious signs of constipation and possibly an impaction or obstruction so we quit for a day and had to return to the dreadful (but life saving) rectal irrigations. Once returning to potty training I emailed a nurse at Cincinnati Children's Colorectal Center, and she said to start a daily laxative to prevent constipation instead of just using a laxative to treat it when it occurs. So we are back to 1 chocolate Exlax and I have added a fiber supplement as well. Today has been the perfect day with no accidents and I am so proud to have been able to be patient and let Dylan work this out on his own. He's still got a ways to go before "mastering" it, but he is getting there and I couldn't ask for more. I am pleased to have come this far with the rough road Dylan has had. Seeing Dylan use the toilet like a big boy has been such a blessing, yeah how many parents are you going to hear say that? lol, but I know its a big accomplishment and milestone for him and I am so very proud of him, my heart melts after I praise him and he just has the biggest smile on his face like he has done the best thing ever..It just can;t get any better than that.. I pray that things continue to go well. Dylan is already enrolled in preschool for next year which begins in August, so we are making good progress and are hoping things will get better and better and that preschool will be a breeze. Stay tuned for more exciting potty adventures!!!!

March 30, 2010

A birthday is a blessing in so many ways

This past Saturday, March 27th was Dylan's 4th birthday! I cannot help but to feel so blessed this time every year. When he was born there was that small doubt that he would ever celebrate a birthday at all when he was in critical condition. Now, 4 years later, I can only express the way I feel by saying that we are blessed and think back every year about what he has overcome and are truly thankful that God has let us keep our little guy who has truly beat the odds. All parents know that their child's birthday is special, but when you have a child with a medical disorder who has pulled through so many difficult times, it really puts in perspective how blessing a birthday can be.

March 14, 2010

A little success brings alot of HOPE!

Dylan's fourth birthday is coming up in a few weeks. Everyone knows that I have taken this potty training thing slowly, not forcing him to do it afraid that forcing him would just scare him away from it all. Well, FINALLY, a little success.

Dylan spent an hour or so at my mother in laws a week or so ago, so I could run some errands. She said that he went to the bathroom, climbed up on the toilet, and peed on his own. I will admit at first I was a little skeptical, like "uh yeah right"...Just because this has been such an issue for Dylan. He always would SIT there but never wanted to do the real thing.

Ok, back to the topic, Dylan is in this "streaking" phase. He will not wear clothes and also always wants to take his diaper off. So last night I used it to my advantage, and kept insisting that he try to use the potty. Dylan has now finally realized that he can make himself pass gas, ok a little gross I know, but us HD parents are unaffected by gross. So while he was sitting on the potty I explained to him, "Try to fart, remember how you do when Mom diapers you, push and try to fart"...and he did....and guess what happened...He did his first poop in the potty. I know, I know, seems modest to brag about a little poop. But as parents of children with Hirschsprungs Disease I think we can all agree that everything about our lives so far has been about poop. So yes, we can brag about poo in the potty!!!!!!

This has been a long time coming for us, Dylan is almost 4. Now, I have no idea if things will keep going this easily. I don't exactly know if he is ready for potty training at a more serious aspect. But we will try, and that is all we can do. At least now my worries are put to rest because I know he can do this, I know he has the ability to control it a little. My plan of taking things slow and just letting him try when he is ready has worked. Not an absolute success yet, but this little bit of success shows there is hope and I am excited to see where this takes us.

I hope this gives other hirschsprungs parents hope, and if it shows you anything it should show you just to have patience and things will happen on their own. Encourage your child to use the potty but don't push it...It all happens when they are ready. And for us we are finally on the right path and are ready to tackle this potty training full force now....I know it won't happen over night, and it isn't going to be simple...But we are ready to give it a "real" shot and let Dylan conquer it as he feels ready. Good luck to the rest of you that may be on the potty training path. A little success can bring alot of hope, it has for us.

January 30, 2010

Laxatives, Irrigations, and Probiotics --Oh my

Anyone that knows anything about Hirschsprungs Disease can tell you the facts. The first fact is that every child with this disorder requires an operation to remove the part of the colon that does not work properly, leaving the child with a shorter than normal colon. Since Dylan has had 3 operations, the first 2 operations in the first year of his life, his colon is rather short. He approximately has a third of his colon left. This causes him to have diareaha like bowel movements because the large intestine is responsible for absorbing the water and turning stool into a solid form. As of lately his bowel movements have slowed down. My last post was about a possible partial obstruction caused by his slower than normal motility and my mistake of giving him popcorn.

After trying an irrigation and Dylan vomitting once, he began to feel a bit better, but his bowel movements still were not normal. He wasnt passing enough on his own to fully empty which causes him to get sick and backed up. I contacted the nurse that handles Dylan's case at Cincinnati, filled her in on what was going on, and asked for her opinion of trying a laxative. With the confirmation that it would be safe, we tried exlax. We were told to try 1 square, if he didnt empty on his own within 24 hours to try an irrigation and then up the dose to 2 squares. Dylan is one of those children who goes into fits at just the sight of a medicine bottle, so luckily I hid the package that the exlax came in, and handed him a chocolate square. Much to my surprise he gobbled it down and wanted more!!!!!!!.....The exlax did work, slowly he began emptying a bit at a time, 24 hours later though, he still wasnt emptying like he should, so I did another irrigation. During this time he lost 2 pounds, which shows that his colon was with holding alot of stool. The exlax caused him to have a nasty rash on his bottom that bled, so we have since stopped giving him that.

But I am now doing irrigation ever few days, just to help his colon empty. We have also tried some probiotics. Probiotics will help put some "healthy" bacteria in the colon. So yet again we are back to trial and error trying to figure out this puzzle....Will we ever figure it out? Will Dylan ever be well enough to just be able to live a normal life without irrigations, or medicines? I guess that all depends on the results of the trial and error methods we try. Until then, we have hit the "motility" road block and are not sure what to do.

January 25, 2010

Popcorn is officially a "No, No" in our house

So recently Dylan has gained some weight, looking healthy, and I actually thought that just maybe his Hirschsprungs Journey was getting a bit easier, or "outgrowing" the major issues, as some HD kids do. Little did I know that most likely instead of healthy weight gain, we were looking at a bloated belly due to slower motility, meaning his bowel movements were slowing down. Dylan has always been a picky eater, does not try too many new foods, and sticks to stuff that he knows he likes. Hes never been a "healthy" eater, and I've never forced him to any one certain type of diet. There are some foods that affect him different ways, some give him diarreaha, for example if he has too much sugar in his diet. BUT, on the other hand, we are now realizing there are certain foods that he cannot have. The one thing Dylan use to absolutely love was popcorn. Believe it or not popcorn is officially a "No, No" in our house now because it causes Dyaln to completely block up. I had once suspected this a while back, but was told by a doctor that popcorn is good for kids, and a great source of fiber, and fiber is suppose to help "bulk" the stool. However, this is not the case for Dylan. He had popcorn Friday evening, starting Saturday his motility started to change, barely having a bowel movement, feeling like he needed to go but couldn't. If he did go, there wasnt much. So by Sunday, he was blocked up quite a bit, didnt eat much for breakfast (and thats some of his favorite types of foods) so I knew it was possible he wasnt feeling well. Him and I went to the store, he loves to shop, but he was very quiet on the trip there and back, when we got home he went to the couch and begin to lay around which was when I knew what was coming next. He slept a few hours, and he usually rarely naps...Sure enough his temperature went up a bit and I debated on whether to start rectal irrigations in hopes of getting ahead of the problem before it started or got worse. The irrigation wasnt an absolute success but it did help a little. Dylan did start feeling better and wanted to get up and try to play, but as soon as he did he vomitted a few times, and then was back on the couch for the rest of the evening. He did wake up fine though, and seems to be doing well, is eating again, and is having some bowel movements. So looks as things are "moving along" now and hopefully returning to normal. This goes to show that these kids are more than likely going to have issues for the rest of their lives. Probably not serious issues, and things will most likely get better as they get older, but as every other HD mother has said..."its all trial and error"...When you find foods that affect their motility in a negative way, then you make a "NO, NO" list and know they cant have it...And for Dylan this list now includes popcorn, which was always one of this favorite snacks. But another important note is to know the signs and symptoms of knowing when a blockage or obstruction is forming and get a step ahead of the problem before it gets too bad. This time I knew to react quickly and it only lasted a day, the last time he did this it lasted a week and he ended up in the hospital. Thankfully this was a short episode, which can be prevented from now on from just avoiding popcorn. So my lesson this week is, Short colon + slower motility + popcorn = a "No, No". This may not be the case for all HD kids, I have had some HD moms tell me that popcorn has no affect on their kids, but other foods do, so it is different with each child, and of course each childs HD case is never the same, noones colon is exactly the same, things affect people in different ways. The moral to the story is monitor foods and their affect on motility. I know I have learned some valuable lessons from doing so lately.

January 15, 2010

Night Time Tummy Troubles

I know I have said time and time again, that I am blessed that Dylan is well and healthy, things could always be worse (and thank god they arent). But I must know, when will these kids every get a break? Im sure the other Hirschsprungs families can relate to that question.

Dylan woke up at 3 am this morning, his stomach rumbling, crying that he needed a diaper, his words were "I poopied Mommy, change my diaper"....But there was nothing there. He continued this for an hour, I kept trying to massage his belly, put his body in positions that would help relieve gas if that was the problem, while I rubbed his back. Nothing seemed to help. It really breaks a mothers heart for her child to be complaining of pain and discomfort, and yet theres nothing she can do to help. Hugs and love is all a mom can do at times like this....My poor little guy finally went back to sleep, and woke up this morning fine. So it is a good possibility that it could have been gas (air) build up that was causing him such pain. He hasnt had any bowel movements today, and after last night that makes me wonder if an obstruction is starting but you know what....I worry too to much......So hopefully its nothing and today things will return to normal. On days like this is does help to keep a positive attitude and be optimistic. If not the worries and struggling would drive you crazy other wise.

January 12, 2010

Jan 2010 ~1 year anniversary of Dylan's second Pull-thru surgery

Christmas is over, the new year has begun. January 6, 2010 marked a special time for us.....a new year, and Dylan's official 1 year post operative anniversary. Though its been one long road, and the battle is clearly not over, last year was a blessed year. Dylan has been doing ok, hasnt been sick that often like he had been at one time. We have attempted potty training, or well I should say I have, but Dylan is just stubborn and really doesnt even want to try. As of now, hes still in diapers, well if you count the 1 hour of a day that he will keep one on anyways. Hes in that stage to where he is always wanting to pull his diaper off, and when he does this I take him straight to the potty and tell him if he doesnt want to wear a diaper that he needs to try to use the toilet. Of course, when I take him there and make him sit there against his own will, he gets mad and doesnt like it. The only thing is, if I leave it up to him to do it, he wants to sit there with his diaper or underwear on. So we are having absolutely no luck with toilet training. I knew it would be a difficult task, but its turned out harder than I amagined just because Dylan does not want to do it. I still plan on using this oppurtunity to my advatage though, if hes going to take his diaper off a dozen times a day, then hes going to sit on the potty each time. With this hopefully he will begin to realize what he needs to do if he doesnt want to wear a diaper.

Dylan's hirschsprungs journey has never been easy, although we are lucky it has went as well as it has. Theres so many kids out there that struggle alot worse, so I am more than thankful that God has let us have "the easy road" compared to some. I cant complain, we will just work at it until we get it. Dylans 4th birthday is coming up, and I cannot believe how time flies. My little boy is turning into a big boy and will soon start preschool which will be a whole new chapter, and hopefully we can get him potty trained by then, and if not then, well we will pray that he ends up with an understanding teacher that has a big heart. So, to the rest of you Hirschsprungs mommies out there...stay strong, and take it one day at a time...Things will slowly look up, when things seem hard, just remember, things could be worse, we still have our precious children after all, some havent been so blessed. So always count your blessings...the few, the better, just be thankful.