Friday, October 30, 2009

Can it be??

Both kids were down to 98.x last night. Neither went to bed with a fever, and ... neither woke up with a fever!! Is it truly possible? The pediatrician mentioned that our county seems to be hit with a lesser strength of h1n1 lately.

PLEASE PLEASE let the fevers stay away. I don't want Halloween to be ruined tomorrow!!

Thursday, October 29, 2009

Oink oink oink.

Monkey officially tested positive for H1N1. The pediatrician said he should ride it out, because he's a healthy kid. That way he will build up his immunity to it and not get it again. He prescribed TamiFlu for Peanut, who was blissfuly off at school, having not been sick.

Until we pulled in the driveway from Monkey's appointment, and my cell phone rang. She needs to be picked up.

Screaming, crying, miserable.

Temp of 99.9.

Shit. I gave her the first dose of TamiFlu, but the ped says if her fever tops 100 to take her to the ER. That kids with CP and Epilepsy go downhill fast with this one.



My Monkey boy woke up with a fever of 100.6 this morning. He's had a sore throat, cough, phlemy yuck, since Saturday. But no fever until this morning. There are three kids in our school of only 390 kids, in the hospital with swine flu. That's a lot ....

I am trying to get someone to swab him today, so that if he's positive I can get Peanut on TamiFlu immediately. I am really worried .......

Tuesday, October 27, 2009

A quick update

We got the Lamictal generic tonite, called Lamotrigine. I am supposed to start her on half a tablet at night. Okay, this thing is TINY. So I cut it in half with the pill cutter, and then crush it in the pill crusher. Try and get all this tiny powder in a syringe, to pull up some water. I'm wondering if it would dissolve in water, if I just put the half pill in the syringe and then pulled up water, without crushing it first? Seems like she's never going to get the exact dose this way. And no, it doesn't come in a liquid.

Lacey, I freaked out thinking about IS immediately the first time she did it this morning. She did it twice in a row the first time. The second time it was just once. The third time it was twice, and the fourth time it was just once. Not large clusters, like I've read about with IS?

I hate seizures. We went almost six years without a single. It's not fair!

Cathy, her culture grew Enterobacter and she is on Furadantin? From looking online that doesn't look very uncommon, but they sure made it sound like it was. The pharmacy gave me a four day supply even though we don't have the auth yet, because I told them she really needed it and threatened to cry. ;)

New type of seizures

As of today we have new seizures. This has happened four times today. Three of the times while I was holding her, and once while she was sitting on the floor playing.

Her head drops straight down super fast, her arms come out to her sides. It lasts maybe two seconds? Then her head comes back up and she smiles at me like nothing happened.

Drop seizures? Something else? UGH! I don't know. I can't blame it on the Lamictal not working, because we don't even have it yet! That's right, the insurance denied it. First they denied the name brand, and requested that the doctor allow them to fill it with a generic. He agreed, then they refused the generic. They said it needs a prior auth. So we don't have that on board yet, so I don't know if it would be helping or not.

And ... the UTI she had last week? She's been on the wrong antibiotic for the last week. Which explains why her pee is still funky and she still feels like crap. I finally called the pediatrician last night, because no one ever called me to give me the culture results. He said "What? The urology nurse didn't call you last Thursday??" He was furious. Turns out that the UTI is not responsive to Bactrim, the med they put her on last Monday. And the urologist was supposed to call me Thursday to tell me this, and call in some new hardly ever used drug. Which never happened. So the pediatrician called it in last night, and of course the insurance denied it and now we are waiting for THAT appeal also.

Seriously, MediCal, what the hell. It's not like she's having seizures or anything! Oh wait ......

I just left a message at the neurology office, explaining these new spells. I don't like them. I don't like that every week we are seeing new kinds of seizures. I hate them!

Sunday, October 25, 2009

I love fall!

Pumpkins, Halloween, Thanksgiving, pies, turkey, winter, Christmas, decorations, I love it all! This is my favorite time of year for sure. :) We went to the Pumpkin Patch yesterday. My darling son informed me that this is the last year he is going to allow me to drag him there for pictures. And my dear husband backed him up. So my beautiful daughter and I decided (LOL) that boys are stinky and they aren't invited next year. :)

Thursday, October 22, 2009

Two New Posts in One Day? Wow! :)

I just realized that I got an award! Timmy's mom at TimmyIsPotential gave me a Lemonade Award! I am so happy to get this. Honestly, we moms get so many lemons thrown at us that if we don't quickly learn to make lemonade and enjoy them, we will drown. I'm flattered that she reads my blog and feels I do this well. :)

What is the Lemonade Award?
A Lemonade Award is given to bloggers who show a positive attitude, gratitude, and a willingness to share their ideas, support and online friendship. Another words, When life hands you lemons, you make lemonade and share the wealth.

Here are the rules of the award:
- Put the Lemonade logo on your blog or within your post.
- Nominate at least 10 blogs with great attitude or gratitude.
- Link the nominees within your post.
- Let the nominees know they received this award by commenting on their blog.
- link to the person from whom you received this award.

The 10 blogs that I read that always inspire me are (in no special order of course) -


For the record, it was really hard for me to pick these 10 people! A lot of people I would pick already have this award on their blog. And there are so many more still who are deserving!

Using the Mitrofanoff

The urologist showed me how yesterday and as nervous as I was, it was really easy! I was pleasantly surprised. We are cathing every 4 hours now, through the Mitrofanoff. We are still cathing through the urethra at night and leaving it in overnight, he wants us to do that for another week or two. Then if we want to we can leave a cath in the Mitrofanoff overnight instead. Here are two pictures, three weeks post-op I think the scar looks great already! Today was the first day I really cathed her all by myself. No fighting, no struggle, it was so easy! I am already glad we did this. :)

Oh, and to answer Cathy's question about where the urine had been going since we didn't use the Mitrofanoff last week. We didn't tie off the bottom of her bladder, where it connects to her urethra. So she still pees on her own some, she just doesn't ever empty completely. So she will still pee on her own, and be catheterized as well.

And just because she's so dang cute .... some Peanut pictures. :)

Tuesday, October 20, 2009

What happened to boring?

I have birthday pictures to post and I just can't get more than five minutes at a time on the computer! Hopefully later this afternoon.

Peanut's nurse and I cath'ed her yesterday and her pee was cloudy and stinky with little particulates in it. I called urology, no doctor in the office on Monday. I called the pediatrician, he won't call in antibiotics without a culture. Ugh!

Then her seizures kicked up. They were the worst yesterday than they've been so far. I assume the UTI is to blame.

Today we go to the pediatrician to leave a sample and get on antibiotics. Tomorrow morning we go to the neurologist to talk about another seizure med and decide which one to start her on. Tomorrow afternoon we go to the urologist to be taught how to cath the mitrofanoff stoma. Last week all they did was removed the catheter that's been in it and told me to leave it alone for a week.

What happened to boring??

Friday, October 16, 2009

Happy birthday Princess Peanut!!!

Six years ago today. I never in my wildest dreams could have imagined all the things we would go through in six quick years. It's amazing. She has been through more than most adults, and she still smiles like the world is perfect. And it is, it's just A New Kind Of Perfect.

Happy birthday Peanut!!

(Okay, so the pictures were taken in December 03 when she was two months old. My computer crashed once and I lost earlier pictures.)

Wednesday, October 14, 2009

Dr. Pee this morning!

We're headed to Dr. Pee today! :) The catheter in her Mitrofanoff stoma comes out, and he teaches me how to cath through it. I am nervous!

Tuesday, October 13, 2009


Sleep, sleep, the magical pill.
The more you get, the better you feel.
The less you get, the more you whine.
So please Princess Peanut, SLEEP TONITE!

Written by the most tiredest mommy ever. YAWN!

*As an explanation, she hasn't sleep through the night since the day before surgery. Did I mention, YAWN!?*

Sunday, October 11, 2009

Wow, it's been a whole week since I updated

Things are getting back to normal here, and WOW have we been busy! Since I'm the PTO president at Monkey's school, there was a lot of catch-up for me to do last week. Missing one week really threw off everything. Luckily my board members are great and so helpful. :)

My Peanut is doing amazing. I can never get over how fast these little ones recover from surgery and procedures! If it was me, I would still be laid out, nursing my vicodin every night. LOL

We go to the urologist on Wednesday morning. He is going to remove the catheter from the Mitrofanoff stoma. He will cath it, and show me how. I am a bit nervous! My DH is worse. I changed the dressing over it this morning, because Peanut had a diaper explosion. He nearly passed out looking at it. Ugh! I hope he gets better.

So things are good but busy! Peanut's birthday is this Friday, but her party isn't for a few weeks. Still, I need to get ready for that. Add in Halloween, Red Ribbon Week at school, Conference Week and Book Fair Week. Enough to keep me busy, that's for sure!

Sunday, October 4, 2009

Doing well, ready for boring!

(Edited to add - PLEASE ignore the horrible looking nails in the last photo. Obviously getting my nails filled hasn't fit in to my busy schedule lately! How embarassing.)

Some of you know what I'm talking about. We wait and wait and wait until we can post "Ah, life has been boring lately" and then revel in it! :)

This surgery has been a bit rougher on Peanut than any other. Amazing, since she has had numerous, including one with an 18 minute cardiac arrest in the middle. This recovery has just been tough. I think a lot of it has to do with her maturity level now verses before. She is used to crawling around, playing with toys, climbing all over us on the couch. She tries to do those things, and then ends up hurting.

We moved her crib into the living room, since a crawling kid with a leg bag is not good. She's content in the crib with some toys, and she can watch her TV and see us on the couch. Of course, she spends a lot of time in our laps and arms. She is so cuddly.

Her pain finally today seems almost gone. She has gotten motrin twice, and that's it! Amazing, given that she just had such major abdominal surgery less than a week ago. Kids are TOUGH man! :)

These are some pictures from before surgery, in recovery, and back home. In the photos of the incision dressing, the gauze square on the far end of the incision is where the Mitrofanoff stoma is.

Thursday, October 1, 2009

Post 150 - and we're home!

We came home this morning and had a rough day. We couldn't seem to keep Peanut's pain under control, and she has a slight temp. The doctor tried to call in the dilaudin (something like that), but it's a class 2 drug so he couldn't. His office and the hospital are both 20 minutes from home, so it wasn't convenient to go back for it while she was upset. He ended up calling in Lortab, which seems to have helped.

Her temp was almost 100, but he said that's okay. As long as she stays under 101 she's okay. He thinks her pain is bladder spasms, which I read happens after the surgery. We're doubling her Ditropan to twice a day instead of once a day. Also giving her Milk of Magnesia on top of the Miralax, to try and get her pooping.

I am so relieved to be home. Thank goodness! It sucks being inpatient. Hopefully she gets over this pain hump quickly. It really really really sucks seeing her in pain. It's such a helpless, horrible feeling! I just want to cry along with her.

It is so unfair that my little innocent Peanut has to go through all this crap. It's unfair that ALL our kids have to go through this crap! They are so pure and sweet and it just sucks.

On a happier note, we are home. That's important! I will post some pictures tomorrow probably. Thanks for checking on us, and posting, and praying!