Thursday, November 26, 2009


There is so much in our lives to be thankful for! The obvious ones are my two beautiful children.

My Monkey boy is 9 years old and SO wise beyond his age. Yesterday morning after my husband went to work, I went back to sleep. Peanut was content in her bed, so I figured I would get another half hour or so of sleep. I woke up over an hour later, and she was still quiet! I walk to her room and she's not there. I look down the hall, and she's sitting on the living room floor watching cartoons. I said to Monkey "Wow, I didn't hear Daddy get her out of bed this morning when he left" and he said "That's because I did it". Wow! He clamped her feeding tube, turned off her feeding pump, disconnected it from her stomach, and then managed to lift her 30 pound cuteness out of bed. Carried her down the hall, and put on her favorite cartoon channel. Isn't he amazing!!!

My beautiful Peanut girl ... where to even start! I am thankful that she is here in our house and doing great. There are issues and worries but overall she is amazing. I can remember every word of the PICU doctor in March 2005 telling us that we should really consider removing support. That if she ever woke up from that incident, she would be "what people call a vegetable". That perhaps if we didn't decide to remove all support, we should consider placing her in a home for disabled children. WHAT? Today she is AWESOME! She is crawling, playing, "talking", walking in a gait trainer, just plain AWESOME! How little faith that doctor had in her. How miraculous her recovery from an 18 minute cardiac arrest was. How THANKFUL I am to be her mom!!

My sweet husband .... even though many nights I want to strangle him .... he is such a good daddy. He gets up at night with Peanut and rocks her back to sleep. He plays with Monkey, he is just a great dad. I am lucky to have him!

We have such a great extended family and friends. We are so lucky to have people that will take care of Monkey at a moment's notice, if something happens to Peanut. We have friends that drop food off at the hospital for us, friends who celebrate every tiny thing our Peanut does. We have so much to be thankful for.

How about that plastic g-tube in her stomach? I am thankful that it keeps her going! She refuses to take a single bite by mouth. It is the only reason she is healthy, nourished, and alive!

What about the Mitrofanoff stoma in her stomach? The little dimple hole at the end of the loooong horizontal scar on her belly. The one I was scared of so much, convinced there was no way this was a good idea. What a blessing it has been! I can catheterize my Peanut with no assistance, and with no pain or inconvenience to her. It is one of the best things we have ever done for her!

Her doctors, nurses, therapists ... who never give up on her. Who constantly shower her with love and support, above and beyond what is in their job description. Our new neurologist, who I can email any time of the day and get a response within 12 hours. How thankful I am for him!

And all my friends online. How completely thankful I am for having "met" you all. Moms who understand, moms who get it. Moms who are walking the same walk as we are. Moms who love Holland as much as I do, even though they were really headed to Italy.

Happy Thanksgiving everyone. I am TRULY blessed!!

Tuesday, November 24, 2009

I am a texting addict and I need help.

I have had my Blackberry for almost two years, and I thought I had unlimited texting. Every month our bill varies anywhere from $150-250! Quite a window. However my husband pays the bills, so he has never called to find out what is going on. I am switching from AT&T to Sprint next week and getting a new phone, so they pulled up my current account. Turns out I have only 200 texts a month, and then I am charged ten cents each after that. I just looked up my current bill online. The billing cycle started on Nov. 14th, so it's been 10 days. I am at 462 texts. Shoot! No wonder my bill is SO expensive!!

So you know what I did? I sent texts to everyone telling them not to text me this week. Duh, that took another chunk of change to send them.

I need Texting Anonymous!

Monday, November 23, 2009

Missed a few days of blogging ...

I've mentioned before that I'm the PTO President at Monkey's school. And yes, I admit that I am InSaNe! It's not like I didn't have enough on my plate before I took this on ... LOL. Anyway, December means time for our big Winter Festival! We bring in snow for a sled ride hill. I know that sounds silly to lots of you, but it never ever snows here. We can drive a few hours to snow, but a large percentage of our student body has never been to the snow. So we bring the snow to them! We also have carnival games, food vendors, craft boutique, santa pictures, and a raffle.

It's a LOT to plan. Things to schedule - lights, table, booth rentals, games, etc. Arranging that many volunteers is hard. It's over 50 people at the least!

So I have been stressing out a LOT lately. Ugh, I hate stress. Luckily two other board members came and kidnapped me Saturday afternoon and we went out for dinner and beers. The only rule was NO TALK ABOUT SCHOOL. Yay! :)

In Peanut news, not much has changed. She has had a number of seizures today that are different than before. She is sitting on the floor watching TV or playing toys, and she just falls right over. Plop, just like that, and then sits back up. Poor thing. She just looks at me with this expression like "What the .... ?"

Today we go up to the second dosage level of her Keppra. Hopefully it will start kicking in soon.

Something fun, tonite my Monkey and I are going to a Ducks game. (NHL hockey game) We got the tickets free from United Cerebral Palsy. I am excited to spend time with my boy, he's such a sweetheart. I imagine I will be talked into buying overpriced cotton candy and soda. :)

Wednesday, November 18, 2009

She had a seizure at school today

They sent a note home in her communication book that she had a seizure while they were catheterizing her this morning. Oh and by the way she did the same thing yesterday. Uh, really? Because I picked her up yesterday, she didn't take the bus home. And no one mentioned it to me. Seems to me that I should be told every time she has a seizure at school! Especially since I have specifically asked to be notified.

At least they were both short lived, less than a minute they said. The neurologist said to expect more seizures than normal while we wait to get up to the therapeutic dose of Keppra. That will take four weeks.

I hope that my Peanut doesn't have too many seizures in this time ... or that they at least stay short like these ones were!

Tuesday, November 17, 2009

Check out this giveaway, it's beautiful!

How cute would this look hanging in my Peanut's completely pink and girly room? Enter the drawing to try and win it for your own room! Simply go to 5 Muse Designs blog and leave a comment for a chance to win. :)

Starting Keppra today

The neuro agreed that the Clonazepam is not a great option for another two weeks, while we wait for the Lamictal rash to go away. So we are starting the Keppra tonite.

Lots of you have said it's a great drug for your kids with little side affect, so I am praying for the same for my Peanut!

Monday, November 16, 2009

Waiting for the neuro to call me back

I decided this morning that enough was enough, and I officially hate this Clonazepam. My Peanut is gone. She is this crying, sad, whiny, sleeping, vacant, fogged over shell of herself. It sucks.

I emailed the neuro this weekend and he said it definately sounds like the side affects of Clonazepam. I had asked about Phenobarbital and he said that it has the same side affects but "usually much less severe". Well hello then - can we switch? He didn't answer my email again, so I just called and left a message with his receptionist.

This fog my Peanut is in, is crummy. She is so sad all the time, like she's depressed. My girl is ALWAYS smiling and ready to giggle!

Also, she has had some seizures yesterday and today. Last night when she was asleep she started breathing really funky, and then her left arm started twitching. Her eyes fluttered open and shut. It lasted a little over a minute. Today she's had three head drop seizures. Ugh.

Of all the issues we have dealt with, this is the hardest emotionally on me as the mom!

Sunday, November 15, 2009

I forgot to post the sensory play picture!

In all it's glory. And yes, that is what you think it is.

(Sorry if you have a sensitive stomach! LOL)

Thursday, November 12, 2009

In a daze ....

Evidently my girl is overtaken by the Clonazepam. She is lethargic, quiet, in a fog. To be honest, she looks wasted. But - no seizures in two days. Is this the trade off we have to accept? Ugh!

We are only supposed to be on the Clonazepam for a couple of weeks until the rash from the Lamictal is gone. Then we switch to Keppra, which the neurologist says doesn't dope the kid up like the Clonazepam.

For those of you with kids on Keppra or Clonazepam - does this play out for you? Was your kid drugged up on Clonazepam? Are they drugged up on Keppra?

I hope not. I am really missing my smiling, talking Peanut.

Wednesday, November 11, 2009

On the road to recovery!

I took Peanut to the neurologist first thing Monday morning, after her already scheduled renal ultrasound. He said that he only sees a Lamictal rash 3-4 times a year, and hers was the worst he has EVER seen. He said he really thinks we were thisclose to Steven Johnson Syndrome, and he was relieved that I took her to the ER when I did. Ugh! Me too. The steroids are doing their job, the rash is a ton better now.

He said that it can last up to 3 weeks! Even when it looks like it's gone, if she gets hot or cries hard or something it can pop back up.

He put her on Clonazepam for a couple weeks. It's a seizure med but most kids build up a tolerance to it and have to keep upping the dosage, so he doesn't like to use it long-term. The good thing is that it doesn't have a rash as a side affect, so it's safe to use now while she does have the rash.

Once the rash is totally gone, we are going to put her on Keppra. We will wean up to a full dose over three weeks, and then wean off the Clonazepam. He said it's really common for people with epilepsy to have to try numerous anti-epileptic drugs before finding the right one for them.

The MRI results were negative for any growth, lesion, or cyst on her brain. This is FANTABULOUS news! It means no worries over what it is or how to take care of it or contemplating brain surgery. Hurray!

This does mean however that her epilepsy is idiopathic, meaning it has no known cause. He actually said that is the best type of epilepsy, because you don't have to consider brain surgery. He also said it's usually controllable by medication, once you find the right one.

So we're just hanging in, waiting for the rash to go away. Enjoying our day off today for Veteran's Day. Getting ready for her big party on Saturday, which is going to be made harder since our nurse just cancelled for tomorrow and Friday.

I have a great photo to post later of Peanut enjoying some sensory play. Let's just say it was something smooshy, which she hate to touch normally. Evidently though this was okay to touch and smear. LOL I'll leave this post on that note! ;)

Monday, November 9, 2009

It's a little better today!

We woke up to a pleasant surprise - the rash is a little better! Definately not gone, and definately still insane. But better. :) We went for the renal ultrasound first thing this morning, the lady freaked. I told her it was a medication reaction and showed her the ER discharge papers, and she was okay with it. So hopefully we'll get those results soon, and it will show some improvement in her hydronephrosis!

We have a 10:30 appointment with the neurologist. We are going over the MRI results FINALLY, and talking about the new seizure med.

We are having a (belated) birthday party for Peanut this Saturday, so hopefully the week will calm down!

Sunday, November 8, 2009

Pictures from bedtime

The rash just keeps getting worse! The ER doc said that it would get worse before it got better. He wasn't joking! Poor poppet. :(

We took a trip to the ER today

The rash was worse than ever late this morning, and her face started swelling. We took a trip to the ER. Peanut ended up getting a massive dose of steroids, and orders to continue with Benadryl around the clock. We have to call the neurologist in the morning and get an appointment for tomorrow. We need to find a new seizure med to start her, he says probably Keppra.

And she has a renal ultrasound in the morning. The ER doctor said to still take her, and show them the discharge papers that show that it's just an allergic reaction and not something contagious.

We went by my parent's house for dinner. Yum!

And worse yet this morning

Ugh. The neuro is supposed to call me this morning. She still has no sores on her lips or anything weird with her eyes, but the rash is definately worse again this morning! I wonder if it's not related to the Lamictal, but is something else?? I will ask him when he calls this morning. I surely can't take her to school looking like this. She has a renal ultrasound scheduled for the morning, I imagine they will freak if I bring her in looking like this!

Saturday, November 7, 2009

Rash is worse now

(UPDATED TO ADD) - I just got off the phone with the neuro, he looked at this pictures in his email. He said it still looks okay to stay home. He gave me the warning signs to look for, for steven johnson syndrome. We are to watch closely for chapped lips or sores on her lips, and anything abnormal near her eyes or vagina. If anything like that pops up, we have to go to the ER. How much sleep do you imagine I'll get tonite? I am going to sleep on the floor in her room and set my alarm clock for every two hours. Looking up steven johnson syndrome online scared the crap out of me!

We gave her Benadryl at 12 noon, and he said to administer it every 8 hours. It's 7pm, so we have an hour to go. The first dose didn't help the rash at all, in fact it's much worse now. Any part of her that wasn't covered before, is covered now. And it's much brighter.

She was grumpy all afternoon, but we haven't seen any sores in her mouth, which is what he told me to look for.

I just put her to bed with her sleepytime meds (she won't fall asleep without drugs). I just emailed some pictures to the neuro, and paged him again. I'm worried about going to sleep, if the rash is getting worse.

Lamictal Rash

The neurologist warned me about the possibility of a rash with Lamictal. He said that it could be really dangerous, and to call him immediately if we notice it. Today we are almost 2 weeks into Lamictal usage, and my Peanut woke up covered in a rash. I called him and he said to stop the Lamictal immediately and give her Benadryl every 8 hours. He mentioned that Benadryl can lower seizure threshold, added in with stopping the Lamictal, so to expect more seizures than normal. But hopefully the rash will go away.

He will call tomorrow, to see how it looks. If it gets worse, she gets a fever over 100, or develops mouth sores, we are to go straight to the ER.

I hate seizures!

Friday, November 6, 2009

My heart is breaking for another family .....

Gavin Owens is a mito kid who has fought long and hard. He is not in the last leg of his earthly journey and his family is preparing to say goodbye. I literally cried myself to sleep last night thinking about Gavin. I don't even know him or his family, but just the thought of saying goodbye ..... it's too much. :(

Thursday, November 5, 2009

We're home and waiting for the results

The MRI people wouldn't tell me anything, so I have no clue if it was normal or not. Her MRI's are never "normal", but you know what I mean.

It took five tries to get an IV in her little foot. Then she got a flu shot and h1n1 shot while we were there. Seven sticks on her little perfect body. Ugh, it makes me quesy. :(

I just sent an email to the neurologist, reminding him that I am anxiously awaiting the results.

Tuesday, November 3, 2009

Heading to Club Med for the night ....

Peanut had two episodes of head drop seizures at school this morning, so I went and picked her up and brought her home. The neurologist said they are most likely not infantile spasms, because she's 6. They start in much younger children he said.

We go in tonite, for an MRI at 8am tomorrow. She can't be NPO (without food) for 8 hours before anesthesia due to her metabolic disorder and hypoglycemia. So we get to go in today and hook up to IV's until the morning.

The neurologist is concerned as to the reason for the seizures to have just started now, when she's never had then before. And there are more than one type happening. They are all originating from one specific spot on the brain, so he wants a close look at that spot.

Unless something is glaringly obvious on the MRI tomorrow morning, we will discharged and have a follow-up appointment with the neurologist soon.

I hate sedating my Peanut, she always wakes up screaming and miserable. Never mind the IV start, which is a nightmare every time. Ugh, I wanna throw up.

Please pray the stay goes smoothly with no shocking results!

Monday, November 2, 2009

Happy Halloween!

I hope you all had a great Halloween! Here is my family. I tried to get my husband to dress up but he's just such a big nerd he refused. LOL Just teasing darling. :)

We took our little Genie and her big Alien brother to a Halloween party and trick-or-treating. Thank goodness our Swine Flu episode was REALLY short lived! I don't think she ever got it, and his fever lasted less than 24 hours. She is still on TamiFlu, and cross your fingers that we can get them both shots before it hits us again!