I think I'm back!

It's been a few months, and lots of things have changed in my life. I'm selling our house, moving, pulling my oldest out of Catholic school because we can't afford it, and getting divorced. After a few weeks to heal some and a great therapist and friends to cry with, I feel I can now continue down my little journey forged through the pooh. So, here are my updates on the kids!

Michaela: she still continues to have small accidents. We keep to a high fiber diet as a regular in our house, but otherwise, she's not on any Miralax, soy, probiotics or anything else anymore. None of it ever worked for her. But she doesn't seem to be constipated anymore. I think her "accidents" are from lack of paying attention at this point.

Maeve: she is completely 100% diaper free! Right after that last post in August, she never really looked back. She's had a handful of accidents, but she's not even 4 yet, so I can deal. She's much better that Michaela ever was at this age, so I'm thankful for that!!

Alasdair: he's a little more complicated. We see his surgeon every year in January for his check-ups post pull-thru surgery for his Hirschsprung's. Last January at 18 months old he finally hit 20 pounds, thanks to his high fat-high calorie diet. He was doing great! In June when he turned 2 he was 28 pounds! So we figured we could put him on the same diet everyone else is on in the house, like 2% milk instead of whole cut with half/half, eliminate the nutrition drink at night cut with half/half, cut down the butter and fats, etc. He continued to do well until about October. His bowel movements started to get erratic. He would not go for 1 - 2 days, then he'd go 2 or 3 times in one day, and they were huge blow-out poohs that stunk to high heaven. But he wasn't distended, he didn't have a fever, and his appetite hadn't changed, so I wasn't too worried about enterocolitis. This continued until last week when we saw our surgeon for our check up. He weighed in at 27 1/2 pounds. Uh. Yeah. While they were happy with is growth chart having gained 8 pounds in 1 year, I'm not so thrilled with the fact that he didn't gain anything at all in 6 months. I know that weight gain slows down as they get older, but it shouldn't stop altogether. So, he's back on the high fat-high calorie diet. And we were told to give him a senna laxative (Little Tummies). We give it to him once a day and it's definitely gotten things moving. So far he's had between 1 and 3 bms every day since we started giving it to him. And while they still smell fairly raunchy, they are returning to a more normal consistency (slowly) and a better color. So we'll continue with this until things get back to normal, keep him on his diet until his birthday in June, and hope that we will be able to take him off the senna soon. The prospect of having to use it long term is not an appealing one.

Here's what NOT to feed a kid with HD...

Michaela: no accidents! But she's had Montezuma's Revenge since Sunday morning...

Maeve: 1

Alasdair: 3

Yogurt from Safeway that expired on December 20!!! Seriously, I bought some YoBaby yogurt at Safeway on Saturday evening, and my two littlest ones each had one on Sunday morning. I just happen to notice later around lunchtime that the date on it was from before Christmas. That is so freaking nasty. So my husband took it back to the store today, asked for a manager and told them about the gross expired yogurt, and also threw in the fact that it gave both of my kids diarrhea. Yay. Hirschsprung's and diarrhea DO NOT MIX. So now Doodie's got a huge red rash on his butt and his balls. It was so bad this afternoon that he wouldn't let me even pick him up. He would put himself in a pike position so that he wasn't sitting on my arm with his rear. So we loaded him up with the trusty Ilex and vaseline miracle cream, gave him some Motrin and let him lay down and sleep for an hour or so. He seems to be in less pain now.

There SO needs to be a book on HD and the diaper rash involved with it. Because even if kids are really healthy after their pull-through operations like Alasdair has been, we still deal with the rash. There's just no getting around it. Maybre someday when the kids are in college i'll get around to writing that book...

HD Research Study

Michaela: 1 wet accident
Maeve: 0
Alasdair: 2

Tomorrow I have to call and make an appointment for Doodie's next post-op check up with our surgeon. While we're there, I have to try to sweet talk him into ordering a blood draw for me, DH and Alasdair so we can participate in the Johns Hopkins HD genetic study. I'm really excited to be a part of that. I know we don't get to have any specific information about us, but it feels good to help support the research efforts to figure out more about this disease.

What I'm not excited about is trying to get a blood draw from Alasdair. And I'm even less excited to get one from my husband. He's a needle wuss. :)

It's Spreading

Michaela: no accidents!
Maeve: 2
Alasdair: 2

Boy. Maeve's got something nasty going on. I don't usually have to hold my breath changing diapers, but I sure as heck did today! Gross.

On another note, Alasdair had his check-up with the Dietician at Children's Hospital today. He's been having "issues" with weight gain. He's never followed any growth curve. When he was born he was near the 50th percentile for weight and steadily decreased until he fell off the growth chart at about 1 year of age. Our pediatrician did a blood workup and it came back fine, so he left it alone. But our surgeon at Children's who did A's pull-through surgery was not fully convinced. He wanted to be sure that it wasn't anything related to his HD that might be causing poor weight gain. So he sent us to the Dietician. 3 months ago we saw her and she said A looked fine and healthy, but his height to weight ratio was not very good (meaning he was too tall and too skinny, have you SEEN his dad??). Anyway, she suggested keeping him on formula for a while and checking back in. So today we did that. His height-weight ratio was better, but I think that's because he was sort of scrunched up funny on the measuring table. Anyway, Alasdair is now OFFICIALLY over 20 pounds. 20.3 pounds to be exact. :) She told us to use up the formula and then try some other things to keep his calorie intake up. I think she just doesn't like the fact that we're still using a bottle for his formula, but no worries. Basically the sheets she gave us said we can feed him whatever the heck we want. We could feed the kid Taco Bell every night and they'd be fine with it. We can cook all his food in butter and fry it up in oil, add half and half to his breakfast cereal, and give him ice cream inbetween cookies or cake for dinner! :) I'm sure the girls will LOVE all the veggies that I'm making them eat while the baby feasts on candy for dinner. Good grief. But I've picked a bunch of the less offensive options to beef up his calories that the girls can also partake in, fairly guilt free.

So, overall good news today. Healthy bum and healthy skinny kid!

Introduction

I'll start this blog by introducing myself and my reasons for having such a blog. I think to most moms it will be self-explanitory. I live in Washington with my husband and three kids. Every day in my life as a mother is consumed with poop. Who pooped? What did it look like? What was the texture? How many times? Seriously, if someone came up to your 20-year-old self and said, "Someday, when you're a mom, you will think about poop all day, every day" would you have believed them? Well, they were right. Although my family is fairly special as far as #2 goes, many typical families and all moms have the same "OMG" moments as they are changing the 15th dirty diaper of the day. Read on, my friends, read on.

Michaela is 6. She is chronically constipated to the point where she has "accidents" in her pants, frequently. (She's going to kill me someday!). We have her on Miralax fairly regularly and try to keep to a high fiber/whole grain diet. It doesn't work. She'll be fine for 2 weeks, get constipated and have "accidents" in her pants, go on the Miralax for 2 weeks and be fine. Rinse. Repeat. We have had her tested for Hirschsprung's Disease, but her barium enema came back normal. (See Alasdair's entry below). So it's either a diet thing, an as of yet undetermined physical problem, or a serious attitude problem. We're working on figuring that part out.

Maeve is 2 1/2. She is not potty trained. She is not interested in potty training, sitting on her potty or having anything to do with her potty. However, she does change her own pull-ups, so I can't really complain about that.

Alasdair is 1. He was born with a rare condition called Hirschsprung's Disease (HD). You can read about it here. Basically the lower part of his colon did not have any nerve cells and was spasmed closed, so he couldn't poop even if he wanted to. He had a pull-through surgery to remove that part of his colon and his rectum. He is doing well so far as far as motility, but kids with HD get a NASTY diaper rash that weeps and bleeds. We still struggle with that every few weeks. If you want to read more about Alasdair's journey during his diagnosis and surgery, visit his blog here. So, every day with him are the questions: Did he poop? How many times? Was it hard? Is he constipated? Does he have the runs? What color was it? How did it smell? (our babysitter loves this part. Really.) Vigilance is required with him. If he gets constipated he's at risk for developing enterocolitis, which can be deadly if not caught and treated in time. If he gets the runs, he could already HAVE enterocolitis. It's a scary thing for me each and every day. So far we've been lucky, but kids with HD get enterocolits all the time, sometimes frequently.

So, the purpose of this blog is to vent my frustration as I change my 10th nasty diaper of the day, or wash "accident" panties out in the sink, or open my second pack of wipes for today. You may find it helpful to know that as you drown in dirty diapers, YOU ARE NOT ALONE!!

Enjoy!

Jessica