Hello everyone! I have done a pathetic job of updating on here, and I apologize for that. Even if things are uneventful with Landon (Thank God!), I still need to make it a priority to get on here and share information I've learned, humor, encouragement.. or at least something! According to Blogger, we have had over 5000 page views. That is not something I take lightly! From this point on, I am making it a priority to stay involved in the Hirschsprung's community. There were so many people that have been mentors to us through this journey- experienced parents with kids that beat this disease- that stick around to help others. I want to make sure that I'm doing that, especially since we had such a unique experience on our roller-coaster with this disease.
I left everyone hanging after my last update when we were getting ready to leave the hospital. In typical Landon fashion, that was not the end of our complicated ordeal. He landed back in the hospital 2 more times due to that stinkin' abscess. IV Vancomycin was our friend, but as soon as we left the hospital and Landon and Vanc parted ways, symptoms of the abscess gradually returned during the following week (twice!). By hospitalization #3, Dr. Helmrath decided that Landon was going to need extensive treatment. He kept Landon inpatient for 3 weeks on IV Vancomycin, and then discharged him home on a 6 week course of a high dose of Clindamycin. We were incredibly nervous after Landon took his last dose of Clindamycin.. there are few things more terrifying than your child battling a life threatening issue and having to wait to see if the treatment finally worked this time. I'm happy to report that the abdominal abscess was finally done rearing its ugly head!
But wait, it gets even better! Enterocolitis? What's that?! Could it be that it has been 18 months now since Landon has had enterocolitis?? If you would go back to this time of year, two years ago, and try to tell me that Landon would go 18 months without enterocolitis, I would have thought you were crazy! And then I would probably cry. We are over 7 months post-op on pull-thru #2, and our inkling that the pull-thru itself was successful seems to be true. It has been long enough that the Botox injections are probably worn off, so it is unlikely that we will need to go back and repeat them. If we can make it another 5 months without enterocolitis to the one year post-op point, Landon has an EXCELLENT prognosis.
We have every reason to believe that Landon will make it one year post-op without further complications, because his bowel function is good. A little too good, though..
With most of his colon removed, Dr. Helmrath said that he would be thrilled if long term, Landon has less than 6 bowel movements a day. With that in mind, I honestly do feel that we are experiencing best case scenario. We usually stay under 5 a day, but we are SUPER careful with his diet. No cows milk, no sugar (except for special treats), ABSOLUTELY NO HIGH FRUCTOSE CORN SYRUP! To avoid bowel obstructions, we also say no to fruits with skins and popcorn, because those two things do not digest properly in Landon and pose a serious risk. We still don't have this diet thing figured out though. We have weeks at a time that we are spot on with Landon's diet and he has explosive, watery diarrhea for days straight. We also have times that we are not so good with his diet- our recent vacation to Florida, for example- where Landon, along with the other kids, eat like complete garbage. I braced myself for the worst with every Nutrigrain bar, Poptart, and ice cream treat, but Landon had flawless bowel function. Things like this leave us very confused.
For this reason, even though Landon is turning 3 next week, he really isn't potty trainable yet. This is different for us after parenting our other children. As soon as Carson and Austin showed signs of readiness, we were on it. Carson was completely potty trained at 26 months, Austin at 25 months. When our first foster daughter came to live with us at 2.5 years old, we had her potty trained within 3 months of living with us. I've taken a few trial runs at potty training Landon, and they have been epic failures. On his good days, he is absolutely capable and we could do this without a problem. On his not so good days, it just isn't possible. He doesn't have control of his bowels at all on his bad days. He can blow through a diaper or pull-up and not even realize it's happened until his bottom starts feeling uncomfortable or he notices stool on his leg.
At 3 years old, this isn't an emergency yet. We are still pretty fresh out of his last surgery and his body is still adapting to most of an organ being gone. It's normal for kids with HD to be 4 or 5 before they are potty trained. Unfortunately, it's also not uncommon for kids to be 6, 7, 8... and still have a struggle. There is a terrific week-long bowel management program at Cincinnati Children's with greater than a 90% success rate. The downside, is that their success rate is not through some magical potion or spell. They obtain continence by using either enemas or laxatives. John and I still have discussions on whether or not we are ready to contact Landon's nurse and get him into the program. Right now, our thoughts are to take some more time to try to figure this out on our own. I don't like the idea of committing to laxatives for the rest of Landon's life, and I'm not sure I could bear giving him enemas daily. We had to do enemas for a few days when we learned the hard way that Landon cannot have popcorn, and it was a miserable experience for everyone involved. He screamed in pain, and cried, and begged us "no!" So for now, we will sustain the judgment from others that we must be too lazy to potty train our son when strangers see the pull-up peeking out over the top of his pants. And Landon will be excluded from private preschools, many daycares, vacation Bible schools, and many other opportunities because he is "age appropriate" but "unable," despite this being a clear violation of disability protection laws... *sigh* Thankfully we have my parents to help when we are at work and an awesome public school pre-k program that Landon has a spot in starting in August :)
Developmentally, Landon is blowing us away. Less than a month ago, I had a back and forth conversation with him.. and then cried happy tears! He is speaking in sentences of 4-5 words, sometimes even more, and asking questions, commenting, answering questions.. you name it! He is getting the hang of some of his ABCs and counting to 7. He has taken an interest in drawing/trying to write, and is confirming our suspicions that he is left handed! He feeds himself with utensils very well now, with minimal mess, and has decided to stop using a high chair! He is still such a stinker... oh man he's a handful, but we are continuing to see blessings every day of milestones he was never expected to reach.
As far as the rest of the family goes, not a whole lot has changed. Carson and Austin are both doing well, and the Hunsaker boys are preparing to take over the primary center of our town's public school attendance center. Carson is going into first grade, Austin is starting kindergarten, and as I mentioned, Landon will be starting pre-k. All three of the boys under one roof, Lord help the teachers and staff! ;) Our time with our first and oldest foster daughter is coming to an end. After 14 months with our family, she is scheduled to move to her biological father's house on July 8th. This will be an adjustment for all of us after having her with us for so long, but we are thankful that she is going someplace that we are confident she will be safe and loved. Our younger foster daughter (10 months old now, wow!) is here as well, and that is unlikely to change any time soon. A date has recently been set for termination of her birth parents' rights, and we are expecting that to be wrapped up by this fall. We are hoping and praying that nothing changes, and that we will soon begin the adoption process. We all love her so much, and are ready to make her a Hunsaker. Apparently, she is ready to become a Hunsaker, because she has heard about Landon's health ordeals and decided to pull a few tricks of her own. We have already had one specialist following her at St. Louis Children's since October and will soon be referred to specialist #2 for some further testing. Prayers are appreciated that everything will turn out okay, and if any further issues are identified that she will overcome them like her big brother Landon has!
And now, for some recent pictures :)
Landon's first visit to Florida! He loved the beach just as much as he did in South Carolina :)
He quickly became a master crabber!
Playing a little miniature golf with the family.
On the Daytona Beach boardwalk.
The kiddos with daddy in front of the beautiful water at Ponce Inlet. What a hidden gem!
All ready for his first Disney experience! He was still in mommy's belly on our family's first visit.
With mommy in front of the castle.
Donald Duck is the only character he would get near at Chef Mickey's!
He loved driving the go carts! Of course at Disney World he would love the one ride that we actually have back home..haha!
We stayed at the Cars suites at Art of Animation as his big 3rd birthday present. The reason he loves Cars so much is actually quite special and significant to his journey. At Cincinnati Children's, they have a "netflix" type thing full of children's movies to watch on demand. Landon's time there mostly consisted of laying in bed sick all day, and after sampling several of the movies he fell in love with Cars. We literally watched Cars 5 or 6 times a day almost every day he was in the hospital.. and he became OBSESSED. This was nothing short of a dream come true for him!
We love Mater!
Everything looked so real and such attention to detail was placed to make it on target with Radiator Springs in the movie. We had it in the back of our minds that we would go back to Disney once Landon was old enough to enjoy it (and the older boys old enough to enjoy more of it), but Landon's acquired love for the Cars movie persuaded us to do it now. It was every bit as special as we had hoped it would be :)
*And on a side note, we were very happy with Disney's disability access program. Once we arrived at Magic Kingdom, we went to the Guest Services desk and explained Landon's condition and the implications. They issued him a Disability Access Card which allowed us to go to a ride and obtain a return time to board the ride, rather than standing in 15-60 minute lines. This eliminated the worries of waiting in a loooooong line, only for Landon's intestines to get angry when we reach the front and having to lose our spot in line for a bathroom trip. I'm mentioning this because I had heard a lot of criticism of Disney's recent changes in disability access policies. If you are expecting to receive some type of advantage over other park visitors and to walk right up and skip every line, you will be disappointed, because this is not it. This only allows you to obtain a return time for one ride at a time and the return time is based on the current wait time for the ride. So theoretically it is the same as standing in a line, just without having to be physically present in the line. To us, we found that this system allowed Landon enjoy his Disney experience as much as he would have been able to had he not been born with Hirschsprung's disease. We are already discussing our next trip, hopefully once Baby Girl is old enough to enjoy the experience more, and hope that they maintain their policy so that the next trip will be just as enjoyable and stress-free!
