Developmental Leaping

Last week was a bit of a rough recovery...for both her and me. There it was, in my heart, the feeling that it was over and now it's not. So as she grows, so too do fleeting images of a toddler playing with a watchful eye behind her, just waiting for the next seizure to hit. She could grow out of it still, that leaves us some hope. But for now, we continue on.

Something good did come of this batch of seizures. I really do think that sometimes they are a sign of developmental changes. According to this interesting book, The Wonder Weeks, the brain waves begin to change around this time, 38 weeks of life. So I think she just explodes developmentally and her little brain can't process it all. Maura has decided that she would like to eat.




It wasn't a surprise to me that it took her so long. Patrick was a late eater too. As she came out of her seizure induced haze this week, she was cranky. I figured her out though. She wanted to eat! Three meals a day kind of eating! Of course, she still nurses regularly, but the girl has decided that she is going to open her mouth an gobble down food like nobody's business.

I know there are many more developmental leaps to come, but this was a big one for her. Here's hoping the next one doesn't bring on another cluster of seizures. Mama has a particular hard time with it.

5 Month Streak - Gone in a flash

Five months seems like a lifetime ago. That's how long it's been since Maura's last seizure. Susan, our PT, sat there on the floor as it happened with me and in the quiet, all she said was, "How long has it been?"

It's all that was needed. I was obviously disappointed. Who wouldn't be? Just a day earlier, I'd sat in my OB's office and cried my heart out and said that I truly, in my heart, believed we were done.



I was wrong.

So for the better part of the weekend, we spent our time allowing Maura to rest at home and adjust to her new Keppra dosage as we cautiously go about our lives. Ten seizures later, Maura is spent. Her poor little body is limp and tired. The little girl I know who loves her exersaucer like it's her command center is lounging around sleeping like a newborn. She hasn't smiled at us since Friday. Maura, the girl who I affectionately call Cheeseball, isn't smiling now.

Still, slowly she's coming back. Let's hope for better days ahead. In the meantime, we're still here.

How the Cookie Crumbles...

The other day, I reached into the fridge for Maura's daily meds and realized I didn't have to anymore. It was the last day she was slated to get Topamax, but really, after 3 weeks of weaning, what did it matter if she didn't get that last Tuesday dose? It didn't...so we are left with one. Just the Keppra these days...from three anti-epileptic medications to just one. Not bad ehh? Seems as if Maura is doing really well!!

But then, there's the dark side. The aftermath of it all. There is processing to be done by me. Yeah, you all saw it. You saw me hold it together when they pulled my baby from me 4 weeks early. You watched me stand tall as they kept her in the NICU, transferred her to CHOP, and kept her there for 35 days. I somehow managed to get through a brief "vacation" from the NICU in May when she was sent home and had to return. But coping through 5 months of seizure free, falling into normal Maura? mmm, not so easy...



I think it started in November. My cycle returned on me. I've never been that lucky to keep it at bay. With Patrick, it returned exactly a year to the day that I found out I was pregnant with him. Ironic ehh? Even though I'm still nursing full time, it still came back to get me after just 6 months. And then in December, it was worse. I was melting down...I didn't realize it fully then, until the quiet of January set in.

I have post partum depression. Yeah..you think it hits in the first 6 months. Here we are, Maura will be 9 months old in a few weeks! But let's put the pieces together. The rollercoaster didn't stop in May or June..In fact, Maura's last seizure was on August 31st. The summer was a whirlwind. The autumn was no slower as I filled my days with things...a big consignment sale, Halloween costumes, rearranging our house to accommodate four, painting two bedrooms, creating a train room, inventing a girl room, oh, and Christmas! I kept busy...and I kept the PPD at bay...but it was there...I just didn't let it creep in...

And the further we got from Seizureville, the worse I felt. I missed the NICU. I missed my "job" there. I missed having a greater purpose. I'd have nightmares where I'd wake up in the middle of the night and reach over Maura's face just to make sure she was breathing - more than once! I began to feel like I was useless and lonely during the day. I wasn't enjoying my time with Maura and Patrick and I was filling it with things to do. I was anxious about everything...overthinking going back to work next year (if then)...money..everything! And once the quiet of January set in, I checked out...or rather really checked in with myself and admitted that I do indeed have a problem going on.

So I went for help. It took a lot of gumption to admit that there was a problem...but after doing it, I just feel relieved. And hopefully things will get better now.

So why am I sharing all of this? Well...I've been sharing this rollercoaster straight from the beginning...in between posts about holidays and gifts, there have always been Maura updates...and I've always spoken from the heart very sincerely...and you know what? The aftermath of the NICU isn't all peaches and cream and that's OK...and if I can help one person out there realize that, I'm happy.

Hope Lives Here...but for Everyone?

As I was on Facebook today, a friend of mine posted this petition regarding a little girl being denied a transplant at Children's Hospital of Philadelphia. At first, I was shocked. How is it that this place, this place that gave my very own family HOPE be at the heart of this issue? So I did my research. It's true. I'm sad to tell you that this is really happening, and it really happens all over the place!

The little girl's name is Amelia. You can read her story here as told by her mother. You see, Amelia is mentally retarded. The doctors feel that she doesn't have the quality of life to be given the right of a transplant and all the potential complications that come with it. Their answer is to deny her this transplant and when her kidneys fail, to let her go.

Hope Lives Here. I saw this sign many times as I walked the halls of CHOP. I spent 35 days walking those halls. I've been back many times, for meds, for doctors appointments, to visit the NICU. Hope Lives Here. But really, how can they even say that when this precious little girl and her family can't have the same hope that my family and I have been given?

As a mother of a CHOP patient, I've always been impressed at how CHOP does things differently. When I want to see something happen, I have a say as a parent. When I saw that meds weren't working for Maura, I pushed for change. I asked them to try the Topamax. I asked them to try Keppra 3 times a day. Even more recently, I asked to start weaning the Topamax. Amazingly, I have never been told NO. I've been told, "Let's give it a try." Every single one of those incidents has improved Maura's quality of life. Amelia deserves the same treatment and compassion that CHOP has bestowed upon my family.

Please take a moment to sign the petition to allow Amelia to receive her much needed transplant. And if you've got it in you, please take a moment to let the folks at CHOP know how you feel. Hope cannot live in the halls of CHOP for one family and not for Amelia.
Please take a minute to sign the petition.

Project 365 and what's on my needles...

So we are on Day 9 over there! Have you checked it out yet? Are you trying it? Where is your project? I'd love to link up!!

I'm having a lot of fun with it. Having my phone makes it so much easier to publish a picture a day...but I am finding some things tricky, like I try to make sure I have my picture taken by dinner time...and sometimes I'll post it then too, but then I miss out on some fun dinner/after dinner moments! I've only 357 days left to figure it all out after all!

Please share your link! I'd love to add some links over there and follow along with you this year!

BTW, these are fingerless gloves in the making. I'm using the same pattern that I used for the coffee cuff except I cut out the decorative purling around the circle so that it would feel nice against my hand. I really love this yarn that I'm using!

A Gingerbread Train Moment

Just a moment from our week...one to remember always! He was so patient!

Handmade Christmas - Potholders!

There are a few people who always get a small handmade gift from us at Christmas. Every year, I imagine I'll do something like make caramel corn or vanilla extract, but it never seems to work out that way...I always sew something up for them. This year was no different. Maybe next year, I'll take on the food gift!



This year, I made these cute little pot holders. When I saw this Michael Miller Fabric for Christmas I knew I had to have it! I've got enough to do some other fun things next year, so expect a revisit!

They sew up simple and quick. Each of them measures about 8 inches square. The batting I used is insulbright insulated batting.



Aren't they just fun? A simple gift to give to a few people in pairs...one for each hand of course!

Handmade Christmas - Lavender Hand Scrub and Knitted Washcloths

Let's carry on with the handmade Christmas, shall we? This gift may seem simple enough, but let me tell you, I'm a slow slow slow knitter...I don't have a whole lot of patience to sit and knit knit knit, and I'm constantly distracted by two small children, so it's no surprise that these two wash clothes took me a few nights in December!! Do you know what I could have sewn in a few nights? Don't even get me started...but alas, it's ok, because my sewing machine was out of service briefly anyway!

I used this great pattern for the washcloths, it was free, after all! It knits up really easy and it's got a pretty edge to boot!



The mason jar contains some amazing lavender hand scrub. I get dry hands in winter...as do several other folks in my family. I'll try just about anything, but a nice olive oil scrub works beautifully! To make it is really simple. Mix 1/2 a cup of sugar with 1/3 a cup of olive oil. Put in several drops of essential oil. Mix it all together. Scoop out a little bit and rub it all over your hands before rinsing them. You won't regret doing this. It makes your hands feel soooo good in the deep dry winter!!

Handmade Christmas - Shopping Bags

So let's see...where did I leave off before telling you all about my ambitious little project yesterday? Oh oh that's right...the handmade Christmas! I'm not done yet...oh no! I've got another gift or two to share!

A few years ago, I made my cousin Dawn some amazing shopping bags. I've been making shopping bags since before they were cool. They are so easy to make and I use them for everything. Ironically, I use them mostly for stuff other than shopping LOL! When I do use them for shopping though, the checker folks always LOVE my bags! It's good because I love em too...



Anyway, Dawn's sister really admired said bags. A little bird told me this summer that it might make a good gift, so that's just what I did! Each of these bags is lined in a coordinating fabric and they are completely reversible, so if you don't want the print you can use it on a solid side! They are made of a decor weight cotton, making them almost feel like a really soft cotton duck. It also makes them extra sturdy, and they wash well!

So this is the New Year!

Oh New Years...I'm not sure how I feel about you...Leaving 2011 behind is really bittersweet. While it kept me in the NICU for 35 of it's days, and that doesn't even include the 5 days in the hospital BEFORE the turn for the worse, it also gave me the most vibrant little girl I could wish for. Leaving the whole NICU year behind is really weird. The NICU gave me this weird sense of purpose...I had to go in every day, like a job, and it was like a job beyond being a mother, I had to have intelligent conversation with doctors at rounds, I had to advocate for my daughter's best interest, and on top of all of that, I had to care for my daughter the best that I could under such circumstances! I don't want to say that I enjoyed the NICU, persay, but it is a part of me...and it really is in the past now that we've turned the page to a new calendar...

So what does 2012 bring? Well, for one, I can say *knock on wood* that Maura hasn't had a seizure since last year! That's kinda fun and novel! Patrick will be 4 this year! Four! Isn't that insane? I swear it was just 2008 yesterday...and I'm sure I'll say the same thing about 2011 in a few years too!! I plan to make something more of my etsy shop, and maybe even try my hand at other things...

I'm not one for resolutions, because, let's face it, resolutions often get broken! And while I intend to get in better shape post baby (because I've given her my body for the last 16 months since I nurse full time and refuse to diet while nursing!) I also intend to do something for myself...I'm going to take on Project 365. In fact, I've started already on a new blog just for it! Mind you, the blog has to come together a bit more before it really looks like something, so give me a few days, but I figured why not? If I let it go, I would never start!

Who's in? Join me and I'll totally link you up over there! You know you want to!