Thursday, October 30, 2008

Pecky's on the mend

Michaela: no accidents!
Maeve: at least 1
Alasdair: no idea

It was sitter day again today. Maeve hit me with one as I walked in the door after work, but other than that, I know not. But Doodie's pecky is looking much better today. Hopefully by tomorrow it'll look good as new!

Wednesday, October 29, 2008

It's Flaming!!

Michaela: no accidents!
Maeve: 1
Alasdair: 3

Plus, his little pecky is all flaming red! This morning I changed his first diaper of the day and saw something white and solid in the opening of his penis. I took it out and pulled back the foreskin and saw some more. I cleaned out what I could, but it was all red and kind of puffy in there. I'm not sure where it's coming from. We didn't do anything different, cleaned it all the same way as we have been for the last 16 months... When I changed his second diaper, also poopy, i found more white stuff to clean out. Then with his other diaper changes I haven't found more, but it's still very very red. Poor little guy. It doesn't seem to be bothering him at all though.

I called the nurse at the pediatrician's office and she said to keep it clean and put some zinc oxide cream (20%) on it, but come on, the kids LIVES in Desitin. What good will that do? Anyway we'll keep it clean and watch it until Saturday. If it's not looking better we'll take him in to the doc. Hopefully it will just get better on it's own. Poor Dude!! :(

Honestly, I don't remember

I didn't get to posting last night, and I honestly can't remember the tallies. I know Michaela didn't have any accidents, but that's about it.

It was just one of those days where life is catching up with me!

Monday, October 27, 2008

Monday Madness

Michaela: no accidents!
Maeve: 2
Alasdair: 2

So, we bought the huge container of flax from Costco. I'm hoping we live long enough to use it all. :) But I think it's time to crack it open and start sprinkling it over things. It's sneaky and fabulous. I love it!

And we started our charts today. Maeve = no stars, Michaela = 1 star!

Sunday, October 26, 2008

Charting Fools!

Michaela: no accidents!
Maeve: 0
Alasdair: 1

So, I'm going to start making a chart for Michaela so that we can actually track her BMs. That will help us to know if she's having enough of them or not enough, even with Miralax. And maybe it will help to actually predict when she might have accidents or at least tell me when I have to force her to sit on the toilet and go.

And then I'm going to make Maeve a chart for using the potty. Even the allure of candy corn pumpkins is wearing off. She's so unwilling to even sit on the potty. It's frustrating.

Saturday, October 25, 2008

Saturday Slow-downs

Michaela: no accidents!
Maeve: 2
Alasdair: 2

And his bum is clearing up nicely without having to use the Ilex! I almost broke it out last night but I was too lazy to go grab it from the bathroom, so we just used the Desitin instead. Plus it helps that his poops are slowing down, making the contact with his skin and the caustic poo less frequent. Let's just hope it stays that way for a while. :)

Friday, October 24, 2008

No new updates today

Michaela: 1 small accident right as I walked in the door from work.
Maeve: ?
Alasdair: ?

Another day at the sitter, another day free of diapers and Desitin for me!

Thursday, October 23, 2008

Hot Spots

Michaela: no accidents!
Maeve: ?
Alasdair: ?

It was my day in the office again today. I'm guessing that Alasdair had at least one poop today because after the other day when his butt was on fire, he's been getting steadily clearer with the exception of 2 little "hot spots" that are still really red and weepy. There's one on each cheek. I've been keeping a ton of Desitin on him and it's been sticking really well to those weepy spots, but tonight after his bath I was putting a clean diaper on him and those two spots were really bad again. So I'm guessing that he did a doodie at some point that re-irritated it. Poor guy.

Wednesday, October 22, 2008

All Quiet on the Diaper Front

Michaela: no accidents!
Maeve: 0
Alasdair: 1

It was a very quiet day in the diaper department today, which is good. It gave Dude some time for his bum to heal up. It's all looking very nice now. :)

And we're continuing our attempt at potty training with Maeve. There's not been much success. I think she's really just not in to it, although she's totally ready to. She tells me the minute she goes in her diaper, she changes her own diapers, and she has plenty of vocabulary. She's just stubborn. I'm hoping to get her using the toilet before she turns 4 in 2010.

Tuesday, October 21, 2008

My whole house smells like poop

Michaela: no accidents
Maeve: 2
Alasdair: 5

I swear everytime I walk into the living room it just stinks like poop. Maybe it's just some sort of weird olfactory imprinting; I just know that when I'm home or in the car there's poop lurking about somewhere.

And dude sat in a poopy diaper for over an hour last night (thanks DH!) and his butt was on FIRE. He wouldn't even sit down in the bathtub and I couldn't hold him under his bum. I had to squeeze his legs instead. But a good frosting of the Desitin seemed to do the trick. In just an hour or so after the initial finding of the burn, it seemed to have already gotten better. Poor baby. I can't imagine having a rash like that on my bum.

Monday, October 20, 2008

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. :)

Saturday, October 18, 2008

Busy Day!

Michaela: no accidents!
Maeve: 3
Alasdair: 5

I don't know what these kids ate, but MAN! I think we'll have to eat some cheese and bananas.

So, potty training with Maeve is going slowly, but in the right direction. All of last week she went on the potty for me except for one day where she went in her pull-up before anyone got out of bed to get her on the potty. And for some reason my husband can't seem to get her on the potty in the mornings during the weekend. Now we've just got to get her to go during the day. I've had her sit on the potty for over an hour at a time sometimes and she just won't go. The minute she stands up she goes in her pull-up. Dang it!

Oh well. I'm hopeful that early next year I'll have one less diapered kid to change all day and maybe she'll do better than her big sister!

Friday, October 17, 2008

Friday Fun

Michaela: no accidents!
Maeve: 1
Alasdair: 2

Another office day for me, so this is just from 6 pm until bedtime. Maeve apparently "dropped an asteroid" according to DH. However, they did both do their dookie right before I got home, so I didn't have to change them. YAY!

Thursday, October 16, 2008

Frosting the Bum

Michaela: no accidents?
Maeve: 1, but she did pee in the potty for me again!
Alasdair: no idea

It was my day in the office today so the sitter took charge of the poop, for the most part anyway.

And here is my promised how-to on the Ilex cream. If you have a kid with a weeping or bleeding diaper rash, Ilex is for you! But it's not as simple to use as regular creams. When I was in the hospital and I saw that Alasdair's little scrotum was actually bleeding during a diaper change I totally panicked. I mean, he's my first boy so I don't really know what to do with all that down there anyway, but to find it bleeding just broke my heart! So I called the nurse and she said all non-chalant-like, "oh, I'll bring you some Ilex for that". Um, okay. So she brings me the tube and leaves me to apply it. Being a woman, I flipped over the box and read the instructions. It said to put on a thick layer and top it with petroleum jelly. Well, the nurse didn't bring me any of that, so I thought I was good. I mean, the nurse at a Children's Hospital would surely know if I had to use vaseline, right? So I put on the Ilex and close 'er up. A few hours later at A's next diaper change I literally had to rip the diaper off of his already tender balls. Poor guy!! The nurse came in just as I was changing him (I can't remember if it was the same nurse or not) and was like, "oh! You need to smear vaseline over the top of that so it doesn't stick!" Um HELLO!! Whatever. So she got me some and showed me how to use it properly.

1. Clean the bum area thoroughly.
2. Dry with a clean cloth or air dry.
3. LOAD UP with the Ilex cream. I mean, like you're frosting a cake. TONS of it everywhere that it is weeping or bleeding.
4. Absolutely cover the Ilex with Vaseline or petroleum jelly. Put a really thick layer on.
5. Close up the diaper and you're good to go!

  • The diaper may still stick a little bit, but no worries. It's not too bad as long as you really cover it well with the Vaseline. This stuff turns into rubber cement, seriously!
  • At the next diaper change, DON'T try to pick off all the old Ilex. If it's a poopy diaper, it might turn all brown and look really gross, but just leave it on. Apply more Ilex to the newly exposed areas for any that came off and redo the Vaseline.
  • At bathtime the Ilex will come off nice and easy.
  • I bet within 24 hours things will be looking much better!!
Good Luck!

Wednesday, October 15, 2008

Back to normal

Michaela: 1 pee accident
Maeve: 0
Alasdair: 2

We had our well baby check up today and Dude is great! Tall, skinny and loud. All normal for little boys I hear. :)

So, I promised and Ilex "how to", but it'll have to wait. I cut off a slice of my left index finger making dinner tonite, so typing is a challenge.

Tuesday, October 14, 2008

Cream Analysis

Michaela: no accidents!
Maeve: 2 AND we peed on the potty again this morning, yay!
Alasdair: 6

I'm pretty sure I should own some stock in Desitin. Even with the market being as crazy as it is, I know I'll never be able to stop buying the butt cream. I'm sure we could keep them in business.

Here's a list of some creams that we have tried and my thoughts on them:

Original Desitin* - The BEST, and the best value. It actually sticks to their bottoms and doesn't disappear the minute they pee. Plus, it's got the highest percentage of zinc oxide in it than any other brand. Most brands are like 10% and this is 40%.
Creamy Desitin - Disappears the minute they pee. I don't like any "creamy" creams. I just don't see the point. If it's so easy to wipe off, then how is it protecting their bums?
Desitin Clear - This is just glorified Vaseline. Don't buy it. DON'T.
Triple Paste - This is pretty good stuff, but at more than $30 for the tub (yes, I buy in TUBS), I can get the same results with the Original Desitin.
Boudreaux's Butt Paste - Not worth the money. It smells nice, but it's so runny. It just doesn't do the job on an HD kid. Maybe it would work with a typical baby's rash.
Aveeno - No.
A+D - No.
Burt's Bees - again, it's nice and it's natural, but it's consistency is just too runny to do any good.
Ilex* - This is a specialized barrier cream that you can't just buy on the shelf with these other creams. I got it from the hospital before we left, and then they gave me more at one of our check-ups. But you can order it online if you're in the US, or you can ask your Pharmacist to order it for you. If your little one has the nasty HD rash that is weeping or bleeding, give this a try! Tomorrow I'll post instructions on the Ilex as it's not as simple as just applying it. But this clears up even our worst rashes in about 24 - 36 hours. It's amazing!

*I was not paid a fee for my support of these creams. :)

Monday, October 13, 2008

One Redeeming Thing

Michaela: no accidents!!
Maeve: 1
Alasdair: 3

BUT, Maeve went pee on the potty this morning!! YAYAYAYAYAY!!! And she'll do it for merely 1 orange candy corn pumpkin. She won't do it for the sake of going on the potty, but for candy, she'll to almost anything. :) Which is good, because today the poo she had was running out of her pull up and down her leg. I had to retrace her steps across the house to find all the little spots where it hit the floor. Nasty.

And Michaela seems to be doing better since we've kept her on the Miralax continuously for the last 5 days or so. Alasdair's bum is still red because he still keeps pooping in the middle of the night. Dangit.

Sunday, October 12, 2008

So, was it a floater or sinker?

Michaela: Last night's tub pooh
Maeve: 1
Alasdair: 3

HA! About an hour after I left my house last night I get a text from my husband:

Michaela just pooped in the bathtub. Like a log. This is gonna be a fun night.

There's nothing sweeter than knowing there's a pooh emergency at home and YOU don't have to be the one to clean and sanitize everything. :D

I did ask her though if she could feel that she had to go and she just waited too long or if she really didn't feel it coming. She claimed she couldn't feel it coming and by the time she realized it, it was too late. It's so frustrating. I can talk to her about this all day long, but it's hard to figure out if she's telling me what I want to hear or what just sounds good to her, or if she's actually telling me the truth. So we're still on our quest to figure out if this is a behavioral thing or a physical problem that we need to diagnose and fix.

Saturday, October 11, 2008

Early Post

Michaela: 2 so far
Maeve: 1
Alasdair: 2

I'm leaving in an hour, so hopefully that's all the poop I have to deal with today. :) I'm heading out with a gaggle of friends for dinner and then back to someone's house for board games, a little DDR and a whole lotta drinkin'! (No worries, I'm spending the night!)

Friday, October 10, 2008


Michaela: 1
Maeve: 0
Alasdair: 1

Come to find out from my babysitter, that yesterday Michaela had 2 accidents yesterday with her, so that's like a total of 4, plus the 3 or 4 pairs of dirty nickers I found in the hamper from lord knows when. It's definitely time to get back on the Miralax. I have a plan. We're going to do 6 weeks straight on the Miralax. If she had any accidents, then we're going straight to the pediatrician to see if we need to see a GI. I mean, I know she's sort of a space cadet, but I mean, we've been potty trained for over 3 years now. You'd think she's have gotten the hang of the whole pooping thing by now. ARGH!

Thursday, October 9, 2008

What the...?!

Michaela: 2 #2 accidents today, and 3 pairs of FULLY POOPIE panties from the last few days that she just crammed in her hamper without telling me.
Maeve: 0
Alasdair: 2

Lucky me! It's my day in the office! Although that doesn't stop my kids from hitting me from all sides. I came home from work straight to the dinner table. Everyone was done except Maeve, so I ate with her. We had spaghetti, which means we head straight for the bathtub after eating. So, Michaela runs in there with her first known accident of the night for me. I get her in the tub, then strip down Doodie, only to find he's got a full diaper too. After bath, I put away the mountain of laundry that I've been working on for 3 days now and Doodie hits me again! Then as I'm reading the girls "Rainbow Fish" for their bedtime story I can't help but smell Michaela's butt. Lo and behold, she's dirty AGAIN. Oh my god. I don't even know what to do with her. DH thinks she's just scatterbrained and can't remember to actually GO TO THE BATHROOM, but I still think something is wrong with her. She should NOT be so constipated all the time. We're all on the same diet every day and she's the only one all plugged up. Even Alasdair with the HD isn't ever constipated. Next time we go in to the doc I think I'll bring it up again.

Anyway, I thought I'd throw this out:

I added it to my links on the side bar, but it's a great way to "classify" these diapers, especially for your surgeons or GIs. Enjoy!

Wednesday, October 8, 2008

Blah Humbug

Michaela: no accidents!
Maeve: 4
Alasdair: 3

So gross. I can't wait until this bug is gone from my house. Ick. Dude's bum is back to normal, so I guess that's a good thing.

Tuesday, October 7, 2008

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!

Monday, October 6, 2008

Healing Up

Michaela: no accidents!
Maeve: 1
Alasdair: 3

A's bum is finally healing up. With less stuff coming out it has time to heal in between. Things are finally looking up!

Weekend Update

Per my husband, as I was stuck at the Everett SausageFest for three days straight (tee hee).

Alasdair woke up both days with nasties (and during nap time both days).

I think he had 4 nasties sat and 5 yesterday. And, as you know his bum is raw. This runny stuff seems extra caustic.

I don’t have maeve’s tally, but it’s lower and her bum is fine.

Now, I only got to see my kids for about two hours yesterday evening, and I saw three nasty diapers, two for Maeve and one for A. What is it about me that makes their little colons extra motile? "Hey, there's Mom! Let's poop NOW!!"

Friday, October 3, 2008

Friday Blues

Michaela: 2 #2 accidents
Maeve: unknown
Alasdair: unknown

Today the kids were with the sitter today, so I don't know how many nasties she had to change today, but I got both lucky and unlucky. I didn't have to change any dirty diapers, but I had to deal with 2 accidents with Michaela, and one of them was out at the SausageFest Carnival, where we had no extra panties or anything. Perfect. There's another set of underwear thrown away!

Thursday, October 2, 2008

A Day Off?!


Michaela: 1 #2 accident
Maeve: 1
Alasdair: 3

While that may seem back to normal, that doesn't include the 10 hours that Maeve and Alasdair were with the sitter today while I was in the office. They decided to nail me first thing this morning and right after dinner. And of course one right before bed. I'm not sure how they treated the sitter. :)

Wednesday, October 1, 2008

On the Mend

Michaela: no accidents!
Maeve: 2
Alasdair: 6

Well, we're on the mend today. Things are not so red and rashy, although I have his whole bum smothered in Desitin and I'm changing his diaper every 90 minutes or so. Hopefully by tomorrow he'll slow down with the BMs and he'll heal up! (Update: A got stuck in a dirty diaper at the grocery store, he's back to rashy. Lame.)

So, Monday we had to snake our sewer drain. Wanna know why? Because Michaela (and DH, although he'll never admit it) use WAY too much t.p. Clogs up the sewer lines you know. Ugh.