Acorns!

Every year around this time, it seems I start an acorn collection. Something about them just fascinates me. So simple, yet so complex. I never had an oak tree in my yard growing up so we never had any acorns.



With Hurricane Irene rolling through town this weekend, it left a flurry of old tree branches down, many of them from oak trees covered in acorns. It was literally a field day for collecting them!!



So this year, I plan to do something with them, but what? A frame perhaps? Maybe a mirror? I’m sure I’ll find some great inspiration over at Pinterest, but in the mean time, what do you think I should make with them?

Seizureville

Well we are back in seizureville...and today, Maura has had 4 seizures...the most she'd had on any one day since coming home from the NICU. There have been several seizures over the last week.

There are no answers...we try things and hope they work. They don't know why and there is no definite way to stop them...so it's like mixing up a big old cocktail of meds and hoping that something will work.

As you already know, we are trying to get Maura off phenobarbital. We don't HAVE to do this, but it's in her best interest. So we are trying to stick to our guns on not upping it. The doctors aren't pushing it right now, but we know it's an option, dangling out there if we want to grab it. We are almost a week into the 6 week process, and I really don't want to step back unless it's our dead last option.

Today, we decided to up her Keppra, which has never been weight adjusted since we left the NICU, in hopes that it will work. It takes a few days to get things working IF they are going to work.

We are noticing that her seizures are becoming specific to waking up. It doesn't really mean much, but at least we know when to look for it.

I'm tired, and Joe goes back to school next week. I'm hoping the increase in Keppra does the trick. This is not fun.

Thank you for thinking about Maura today. Hopefully this will all calm down soon!

A Playing with Water Moment

Just a moment from our week...one to savor and remember always...What happened in your week? Have a great weekend everyone!

EEGs, Phenobarbital, and What it All Means

Maura - 5 days old - second EEG, first at CHOP

When Maura was just 40 hours old, she suffered her first seizure. What happened that day led us on a path we'd never expected. It was also the first day she was given Phenobarbital. It's quite a beast of a drug. It's an addictive barbiturate. It can lead to learning disabilities later on in life. And it just wasn't a drug we hoped she'd be on forever. Last month, when Maura had three days of breakthrough seizures around the 4th of July, they increased her Phenobarb dosage. I was dismayed....disappointed that we wouldn't be weaning her off this beast like we had discussed just a week before. But I reminded myself as I gave her the increased dosage that it wasn't forever...we hoped.


Maura - Today

Today, Maura had an appointment with neurology. I didn't quite know what to expect because of her breakthrough seizure on Monday. I wasn't even going to ask about weaning because of it, but after looking closely at the picture, the doctor had other plans. You see, we also had an EEG today. Previously, I had thought What will they even see on an EEG if she isn't seizing...after all, they've used the video EEG just to determine if she was seizing during some of her NICU time. But I was wrong, and it all came back to me like a vague memory that I should have been able to know they'd see something. The tech said it would show up as abnormal if they saw anything unusual. The neurologist said it was normal!



Her very first EEG, at Virtua, the first of four so far, even showed abnormal brain waves without seizure activity visible...so to have a normal EEG was HUGE!

So what does this mean? Well, considering the seizure on Monday, we are making a weight adjusted increase on Maura's Topamax. However, she started the 6 week weaning process from Phenobarbital at tonight's med dosage. She'll also be staying on her lowline dose of Keppra for now as well (which hasn't been adjusted at all since she was about 6 pounds, did I mention she's also doubled her birth weight and now weighs 12 lbs 11.9 oz?!!)

So for the time being, we work on weaning. Please keep Maura in your thoughts and prayers on this next milestone and hope for the best. Hopefully, we can move on past at least one of these drugs sooner, rather than later without more breakthrough seizures.

Visiting Shelburne Farms

One of the places we stopped at in Vermont was Shelburne Farms. Joe and I had never been there before, but we really thought Patrick would like it. (Does he even realize how much we do for him?) I should know my child best. He was most amused by the tractor ride! He just said to me today, "We go on tractor like this again Mama!?" Yes bud..we will, in the fall, when we go pick pumpkins! Until then, he'll have to make do with his toy tractor that he showed me today.



This place is amazing. It sits on a peninsula on Lake Champlain and their goal is to really educate people about a working farm. They were making cheese and milking cows and goats and gathering chickens...just so much fun! It really gave us a taste for the farm life.



I was happy to visit and try on someone else's shoes if only for the day. It was almost like stepping back in time!

Not Out Of the Woods

We thought we were there. Nobody said a word, but I'm just as sure that Joe was thinking what I was thinking. One month came and went. Maura was fine. Vermont came and went. Maura was fine. This morning, I laid her on the bed alone so that I could run to the bathroom. Joe was already up. Seconds later, I heard her crying hysterically. Maura doesn't really cry. I still didn't think anything of it, I thought perhaps she'd rolled over or something...not that she does that either...but Joe ran to check on her, and she was mid seizure. I should have known. It was that rhythmic cry. I ran in. She looked the same as she always has mid seizure..amazingly...for as much as she's grown and changed.

So apparently we aren't there yet. I'm hoping we don't have more today, but if we do, we'll deal with it. We have a neuro appointment on Wednesday at CHOP. They'll run an EEG on her anyway, not that they'll see anything without her having a seizure. Apparently, we aren't on solid ground just yet...

Vermont

We took to the woods for a few days. I didn't really tell anyone that we were going save for a few family members and the neighbor who watched the cat. I think I kept my secret out of fear for Maura. What would happen if she had a seizure in the remote woods of northern Vermont? How would we handle it? We didn't even have cell service! But 5 days later, Maura survived her first camping trip rather uneventfully..



There is just something about the woods that brings out the best in us. Joe and I have been camping since early in our relationship. In fact, ten years ago, when we got married, we headed to Vermont to go camping. That was the very reason we headed back!

Ten years! This time we brought along the kids and were able to smile and enjoy all the things we have to be thankful for over the last ten years! We've come a long way in that time. I'm glad we took to the woods to appreciate it!

Moonflower Pod

I love how plants can surprise you. Anyone recognize this? It' a seedpod for a moonflower. No...not my moonflowers, but my neighbors! I plan to have my own next year, so we'll see what happens with that! Anyway, I claimed this seed pod a few weeks and set it aside on my counter hoping it would just dry out. Instead, the outside, which is a spikey ball, ended up getting soft and I was able to peel it back. This brain like ball was inside. The second you poke at it, the seeds begin to fall right out of this! Those are all seeds that you are actually seeing! Isn't that neat?

Train Crayons!

Look! It's my first tutorial! I'm not one for giving away crap as gift bags at parties...loot bags? goodie bags? But a little something is nice....so this year, I had this grand idea! Crayons! But not only regular crayons - TRAIN CRAYONS!

Patrick loves trains so much...but as you can see, the first batch came out REALLY wonky...Yeah, I had this old pot...and I tried to melt it all down and make swirlie crayons...didn't work so hot!



Then I figured out an easier way! Here is what you need:

-Crayons for melting
-cupcake cups
-cupcake pan
-oven
-candy mold - shape of your choice!

First, heat your oven to 400 degrees. You are going to be melting your crayons in cupcake cups! I found that you should double up, the crayons do leak through!! Take the paper off your crayons and put them in cupcake cups in a cupcake pan....



Put it in the oven for about 10 minutes and watch for them to melt.



When they melt, pour them into your molds. I used train candy molds I found on Amazon.



They cool rather quickly, and then you can pop them out. It makes it really easy if you put your mold in the freezer for a few minutes to harden them up and make them pop easier.



I wanted them to be visible, so I bought treat bags from Michaels and put them in the bags with hand made labels on the top! I'll put these together with some coloring pages and send the kids on their way! Patrick will have fun setting them up to color too!!

Dear Patrick...

I can hardly believe 3 years has passed by since you came into our lives. It was really the 7th that it all began, and here we celebrated your birthday on the 7th this year!



Just like your sister, you weren't staying in for the whole duration. You wanted out out out! And while you rushed to get out, you've taken your time as you go through life now.



You are a loveable little boy. You've got a great sense of humor. Everything thing from "I steal your nose! I eat it!" to "What?" "Chicken Butt!" You know how to crack jokes!



I can assure you, we love you very much. We love watching you grow and change. We can't wait to see what the future brings. But for now, you are still Mama's little boy. You are three!



(yes yes, there are FIVE candles..but how could I deny the child the other two trains? He loves his trains!)

Look Who's Smiling!

She's actually been doing it for a few weeks, but she's subtle and cheeky and hard to catch with a camera. But I've figured her out, oh yes I have!




It's when they smile that it's all over..every second spent worrying..every trip to the NICU...every tear cried in the last 3 months...you just melt when they smile...it's magic!

Preparing for a Party...

Someone is turning 3. Can you guess who?




It's been a hard few months...I'm sure it's been just as hard on him as it has been on us. He deserves a special birthday...



He's gungho about Thomas. Did I mention that? Well, trains in general...so we've gone with a train theme, with a touch of Thomas...



The cupcakes are even Thomas colors!




I think he's going to be one happy little boy on Sunday when we celebrate his lucky 8/8/08 birthday!

A Baby Theo Moment

Just a moment from our week...one to remember always...welcoming new friends into the world!

What is your moment this week?