Thankful

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!!

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!

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. :)

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!

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!

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!