Halloween 5k for Craniosynostosis

Over the weekend my parents, Jude, and I roadtripped from our humble abode in Metro-Detroit to Long Island for a 5k walk/run for craniosynostosis. We took off Friday night (I forgot to take epic roadtripping pictures to commemorate Jude's first roadtrip though :() and stopped in the middle of Pennsylvania the wee hours to get some rest in a motel room. Saturday morning, we wasted no time in getting out of there and back on the road and got to New York in the early afternoon. Before checking into the hotel we made a stop at Coney Island for lunch (coney's, naturally) and to go to the aquarium.

Jude was a shark!

He wanted to eat the penguins, because that's what sharks do. 

With his sharky brethren.

On the Coney Island boardwalk.

After we got to the hotel that night, Jude crawled and played around the room until eleven o'clock because he was so restless from being stuck in the car seat for so long, but he was so happy to be free.

Stretching before the race. My mum was a trooper and ran the 5K while the rest of us walked. She ran it in 33 minutes!

At the starting line!

Mile 2! Jude wanted a little break to stretch his legs.

He walked a little bit of it, with help from his Pop-Pop and I of course.

He crossed the finish line and got a medal for being so awesome.

We made a slight detour to have Halloween lunch in Sleepy Hollow... because we're that awesome nerdy. 

We all had matching capes that said Jude's Mama, PopPop, and Gran and also shirts that said "Going the distance for Jude Man" buttttt we didn't take pictures. I think we should take pictures sometime soon so we can have some. There were tons of people at the race, it was great to see all the people supporting the cause and we got to talk to a few. Jude played with a few kids afterwards too. 

The downfalls to the trip:

- No trick-or-treating for us.

- Jude became addicted to the tube because we had car DVD players and it was the only way to keep him calm. I didn't think that I would need more than 4 full movie and 1 Baby Einstein DVD's so we ended up watching "Alice In Wonderland" 4 times. I knew I should have followed my gut and grabbed more. 

Ch-ch-changes

This is one of those posts that I've been thinking about making for, like, a week. No joke. 
I've been busy making some changes to better myself and the world.
Change 1: I've stopped using shampoo and my hair looks/feels fabulous. If not better than before. I use baking soda & water. Plus a few drops of tea tree oil for a little extra cleansing boost. I haven't added the recommended vinegar "conditioner" because a) I haven't really needed it and b) I couldn't find the apple cider vinegar in our cupboards.
Change 2: Teaching Jude how to walk. He's getting better at it everyday, he'll take a step or two on his own here and there. I think the most he has taken on his own so far is around 4 or 5. He's getting there slowly, but surely. Soon he'll be running and driving me even more crazy.
Change 3: I made my own soap. It smells of patchouli and is shaped like a T-Rex.
Change 4: Since I'm running in the 5k for Craniosynostosis on Halloween, I decided the other day that maybe I should start actually training. I tried training before, but I always felt like crap (I'm out of shape and my legs weren't cooperating by either my knees or ankles failing on me) after running, so I gave up after a week. I was doing the Couch to 5k plan before, but this time I decided to just go for a barefoot run. Well, I wore my fancy Paper-Feet. I jogged .91 miles (which I know thanks to http://www.mapmyrun.com/) without stopping. The only reason I stopped and chose to do a 2 block cool-down walk as opposed to 1 is because I was thirsty and forgot to bring a water bottle with me. But, after running barefoot, my legs felt great and I didn't twist my ankle once(which I'm normally very prone to doing), no shin splints, no awkward cramps. I did forget to stretch, but I still felt great. I need to keep that up and work up to 3 miles for the run.
Speaking of the run. I'm trying to collect money. A $500 donation, going towards The Jorge Posada Foundation & CAPPS (the hosts of the race), also gets a spot on the t-shirt and in the official race journal for Jude's name. So far I have collected $155, mostly through Paypal. If you're interested in making a donation to sponsor Jude in the race, please let me know and I can send you the Paypal link.

Changes I still need to make include but aren't limited to: cloth pads and/or cup, sewing more, knitting more, crafting things to sell, rearranging my bedroom, and finding an attention span.

8 weeks post-op!

Jude was 8 weeks post-op as of Wednesday!
One of the hardest things I've been through in my life happened 8 weeks ago. It sometimes seems longer ago than that, probably because we jumped right back into normal life almost immediately. I'm so relieved it's all behind us. He looks like an entirely different person than he did 8-9 weeks ago. Hell, he looks completely different than he did when he was born, but we'll save that progression for his Birthday on Monday.

Top-view, pre-op.

8 weeks ago, the morning of his surgery.

Fresh out of surgery.

Top-view, 2 days post-op.

1 week post-op.

2 weeks post-op.

Top view, 2 weeks.

3 weeks.

4 weeks.

6 weeks.

8 weeks!

Top-view, 8 weeks.

It has been a long, tough journey, and I'd be lying if I said it wasn't the hardest thing in my life thus far. I'd also be lying if I told you I didn't cry while gathering the pictures and writing this post. Sometimes I miss his little pointy noggin, butbI'm glad it's over with. I'm glad everything has returned to mostly normal. His scar is so normal to me that I almost forget it's there when we're out in public until someone (usually a small child) looks at him odd, and sometimes people ask. I like when people ask because then I can inform them of craniosynostosis. More times than one would expect with it being so rare and unheard of until diagnosis I run into someone who says "Oh, yeah, so and so's child had that." It's good to know we're not alone.
There's a 5k run/walk for craniosynostosis on Halloween this year. It's in New York, but my mum and I are going to make the road trip to run. We're also going to do some fundraising. It's benefiting two of the larger craniosynostosis foundations; the Jorge Posada Foundation and CAPPS. We'll work something awesome out for fundraising. I think our goal will be $500, that's the minimum for t-shirt sponsorship to get Jude's name on the shirts and that we're running for him.
I feared that his personality would change after the surgery from the stress of it all and all the strangers in the hospital, but it hasn't. He's one of the friendliest, most out-going babies I have ever seen. Whenever we go out anywhere he sits there and waves at anyone he sees. He starts conversations with them. He flirts with the ladies. Strangers think he's a complete doll. I'm thankful for that.
Now that that journey is over with, I'm excited to see what other journeys come our way. I hope they aren't nearly as challenging and stressful as this one has been though.

I promise I'll resume regular blogging soon...

... but until then you're stuck with another weekly recap, sorry. :( It has been a very long, trying week to say the least.

Wednesday, June 9th
- Jude's surgery.
- 6:30 am, arrived at the hospital to check-in.
- 7:30 am, they took him back.

- 9:15 am, they told us they started surgery.
- 11 am, they told us that the neurosurgeon finished their part and plastics were starting.
- 3:15 pm, they told us the surgery was over, went great, and they were waiting to get him into a recovery room.
- 4 pm, spoke to the surgeons, they told me everything went fantastic.
- 5 pm, finally got to see Jude and they took him to the PICU.
- Throughout all of that, I kept myself distracted by using the internet, reading, knitting, napping, and listening to music. My parents obviously went with me. My grandma came to wait with us, she bought me chocolate covered bacon because she loves me. My grandfather also came unexpectedly.

Thursday, June 10th
- Jude spent most of the day in the PICU, and they slowly removed all of his wires.

- They moved him to a room on the floor at around 5 pm. 
- All the nurses and doctors said he looked a lot better than most cases they've seen.

Friday & Saturday, June 11th - 12th
- Hospital stay, nothing too exciting.

- They removed his bandages Friday morning.

- Jude slowly returned to his normal self and started playing more even though his eyes were swelled shut.
- The whole time in the hospital my mum and I took turns staying with him so we could get some sleep.

Sunday, June 13th

- We came home! Even though his eyes were still shut, they were pleased with his progress and sent us home in the morning. The doctors came in in the morning while I was sleeping and my mum didn't tell me until I eventually stumbled back to the room, showered and with breakfast for the two of us.

Since then we've been home. Jude's eyes started opening later Sunday afternoon and now they're almost all the way there. He's resumed being mischievous like before and we have to keep a close eye on him to make sure he doesn't bonk his head.

We also have started trying to get him to stop co-sleeping and sleep on his own. He has to sleep upright for the next few months so that's part of the reason why. He has to sleep in the carseat in his crib, he's not too thrilled about that at night, but my mom is insistent that he'll get used to it eventually and stop waking up every 2 hours.

I got the results from the paternity test today. There's a 99.99% chance Christopher's the father, shocker.

Busy week

Where did I leave off last time? Ah, yes, a very incoherent rambling about nothing in particular. Let's do a real life update.

Wednesday, June 2:
- The dreaded paternity test... dun dun dunnnnnnnn. I tried not to be awkward arond Chris, I thought I did pretty well, but he was still awkward, but I reckon that's to be expected. He still won't have an adult convo with me, but whatevz. I'm sure he'll change his mind about that once he gets my lovely pre-recorded Maury "you ARE the father" message. The actual test itself was kind of gross. We go back into this dinky room in an office building and there are two "nurses." They asked the 3 of us to stand against the wall and snap a polaroid, in my head I was making jokes about it because I'm fairly certain it's the only "family" picture of the 3 of us that exists. Then, as the nurse was preparing to swab my mouth I asked if she would wash her hands before doing Jude's because of fear of him getting sick, surgery in a week, yaddayaddayadda. They both looked at me funny and said "We switch gloves between people." As she was saying this, the nurse that did me totally sniffled and wiped her hands on her pants after taking off her gloves. They then proceeded to tell me that the closest bathroom was on the other side of the building. I was like, "I don't care, please wash your hands." She did, it took her forever to go there and come back, the whole time I bit my tongue from complaining to the other nurse that was doing Chris about how they sit in this dinky room all day, swabbing mouths and all they do between people is switch gloves.  There wasn't even hand sanitizer in the room. I thought about calling human services or whoever and complaining, but then I got sidetracked by something shiny.

Friday, June 4: 
- Went out to the bar with Nicole, Jon (whom I met a few random times, years ago but this was the first time we actually hung out), and Mike that night because I was feeling cooped up and needed to surround myself with friends. Mission accomplished.

Saturday, June 5:
- Got lunch with my grandparents, aunt, uncle, and cousins. My grandma got Jude a Saint Jude necklace for surgery. All my little cousins kissed Jude's foot (so they wouldn't spread germs to him) and wished him luck on his surgery as we left.

Sunday, June 6:
- Went to see my sister march in the local parade with the fam.
- Hosted the most badass last minute BBQ-on-a-mostly-rainy-day ever. Jon, Nicole, Dan, and his girlfriend Amanda came over. I really overdid myself, I grilled wings (hot and bbq), butternut squash, and supremely delicious hamburgers. I also sliced a watermelon, Nicole brought chips, Jon brought beer, I had my dad pick up baked beans, soda, and potato salad. Good times were had, we played Scattegories, I almost won but got distracted by a screaming baby and a father who failed at diaper changing and lost in the last round. Everyone but Jon left and he helped me clean up and we hung out for a while. It was an excellent night.

Monday, June 7, today:
- Stressed over packing, it's still not done because Jude keeps getting in the way or whining. My mum's mom came over for a visit. Went on a hospital tour with my mum. I keep freaking out so bad that I almost puke. One full day left before surgery. The lady leading the tour thought I was the one having surgery because I left Jude with my dad and I look like I'm 16.
- Jude said "kitty" to the cat while I was gone. 

So the theme of the weekend was pretty much "surrounding myself with family and friends to distract myself from freaking out." It worked, but now that that stall technique is out of the way, I got nothing. I'll get through this, somehow, I know I will.

Tomorrow, my dad's taking Jude to the zoo while my mum, sister, and I get massages and lunch. RELAXATION... It will only last like 10 minutes though before I'm going crazy again.

Rain, rain go away

The birthday party planning is coming along swimmingly (tehe). Hopefully I'll have the invitations finished before Wednesday, that would be convenient and ideal. I lost my basket o stamps once again though. I don't know how this thing always goes missing but it does. I wanted to see if I have an invitation stamp or if I have to do it all by hand, which I have no problem with, I just thought a stamp would look nice. I actually made progress on the invitations today... by printing a fail whale stencil, making modifications to it, cutting it out, and tracing it onto 15 pieces of cardstock. It's a step. I made a mock-up a few days ago that's super cute, but in all the wrong colors.

I have a silent movie on in the background and each time I look up it gets stranger and stranger. "The Mysterious Island."  There are strange creatures with a battering ram undersea. I have no idea what's going on, I didn't even start it from the beginning.

It's storming, I hate storms, luckily the power didn't go out and it has mostly let up.

Jude is actually sleeping on his own right now! In his crib! Wooo! And when my parents get home from a graduation party I'm going to the bar to grab a drink with some friends! A girl needs a break... Jude has been restless today. He didn't sleep until midnight last night, woke up around 7-8, and then napped for only about 20 minutes total. Maybe this means that he'll sleep through the night and on his own? I doubt it, but it's nice to dream. So when I mentioned he was cutting a second tooth on the bottom... It's more like 3. He has the one on the top, and 3 on the bottom are working their way out and I think maybe another one or two on top. Just a few weeks ago he had none, now he's getting tons. That means as soon as we're back to semi-normal after his surgery I'll start him on meats (I refuse to give him the pureed meats, they gross me out) and more table foods! Yay!

My grandma's coming over tomorrow to give Jude a gift for his surgery. I love my grandma. My mum bought him a Rex (the T-Rex from "Toy Story") stuffy at Kohl's today. He's super cute. Jude was loving on the Lorax earlier too. He's so funny. OH! He pushed his walker-push toy... standing up! He only got one or two little steps, but it's still exciting even though I'm not ready for him to start walking anytime soon, he could hold off like 3 more months and that would be great.

I'm not sure this post had any real substance or point to it. Sometimes my brain just overflows and my fingers pour it out. I have to wash diapers. (Typing it out helps remind me so I don't forget :P)

Craniosynostosis Awareness

I don't know why I haven't done this sooner, but I guess with Jude's surgery around the corner (one week and one day away), now's as a good a time as any.
I set up a page at carepages.com for Jude. I'll probably keep it more updated than this throughout the surgery and hospital stay. You do have to join carepages in order to view the page.

For awareness and more info on craniosynostosis, you can visit the following sites.
http://www.cappskids.org/ - The Craniosynostosis and Positional Plagiocephaly Support Inc. strives to spread awareness, educate and offer support and guidance to families affected by craniosynostosis and/or positional plagiocephaly.

http://craniokids.org/ - provides awareness and support forums, founded by a mother and father after researching craniosynostosis and being disappointed in the lack of personal support and connections they found.

http://www.jorgeposadafoundation.org/ - founded by Jorge Posada after his son was diagnosed with craniosynostosis, the Jorge Posada foundation is a non-profit organization that creates awareness of craniosynostosis and provide support of families going through this journey.

Thank you all for the support!

Details

I got so excited about Jude's new pointing skill that I completely overlooked his other new favorite activity... Dropping things and saying uh-oh! He actually has been doing it for a while, but that was all mimickery before, now he totally sort of pretends to understands gravity and has labelled it "uh-oh." It's quite adorable, really, he'll get this super serious face after watching something fall and just go "uh-oh." I have a video from breakfast yesterday with both phenomena on my illusive, awesome video camera; the one I got for Christmas when I asked for a simple Flip and an iPod classic, the one that isn't very compatible with my computer and I can't upload from or save the videos to my computer from. It's a good camera, if I had a better computer it would be a great camera. It's one of the many reasons why I'm planning to buy a new laptop this fall with my extra student loan money.

And while I'm going off on this electronics tangent, you, my dear audience, are probably wondering how Jude's battery of doctors appointments on Monday went, or maybe you aren't, I like to pretend you are and I'm going to inform you either way.
First thing at 10 in the morning was some good old fashioned neuropsychological testing. It sounds like a terrible, painful thing but I promise it wasn't. The tests performed on Jude were to measure the Bayley scales. Essentially, Jude played the entire time. He was given "problems" to solve hidden in the form of toys, play, fun, and laughter. The doctor loved him, she was cracking up at him and she said that even though all babies are adorable and all parents are told that that Jude was extra cute. He's also extra smart, according to all the tests, he was showing skills and behaviors of an 11-12 month old. His language skills are right on track. He so cute and so smart that she just wanted to keep him. I really wasn't too concerned that he'd be behind, but they had to test to get a baseline and make sure the fused metopic suture wasn't causing serious damage especially since language is one of the things that is commonly delayed.
After that, we got some Chipotle for lunch, I bought since I made $60 from selling my carseat and some baby clothes on craigslist. Jude kept trying to make friends with all the people who went to the pop machine. He's so silly.
Next up at 1 we met with Carolyn, the craniofacial clinic's nurse practitioner. She went over the surgery with us again, addressed our concerns, reassured us that it was going to not be that bad, and had me sign a waiver. Then we had to go to the pre-op center where I had to fill out more forms and answer the same questions as always for the surgery.
Then we went down to ophthalmology for yet another eye exam even though we all know he can see (again, another thing to double check that the fused suture isn't messing anything up and get a baseline). We get down there and the door is locked so there's a moment of panic and Jude falls asleep while we're looking around for someone to figure out wtf is going on. A receptionist from that department eventually comes down and tells us that the doctor was out of town and that they rescheduled all of that day's appointments, but never called to tell me this...? She pages the resident that's there and she comes in and does Jude's exam, we had to wake him up for it, which was nigh impossible due to his obvious exhaustion. They put drops in his eyes to dilate his pupils so he looked like he had been licking toads all night.
After that fiasco, he had to get blood drawn, which was awful. You know the screaming sounds from The Exorcist? He made noises similar to that, and his eyes were all dilated, it was miserable. Honestly, it was kind of hard not to laugh at the noises. They had to take blood from both his tiny arms, and he kept squeezing my hand. Poor baby. We got to go home after that... At like 4 in the afternoon.

He's a trooper; a red-eyed, "wrist-band" wearin', extra cute, extra smart trooper.

Quick update.

I'm short on time right now so I can't post an in depth update, but I probably will later today or tomorrow. Pictures included, I have tons to upload anyway.
-Jude started pointing the other day, Thursday I believe. He was asked where his mama was and he pointed at me. Aww. It was adorable. He also recognizes our dog, Bubba.
-Welcome to my new followers from the BG blog thread! I promise I'm a better blog-updater than this usually.
-My blog is slightly under construction, I changed the background and need to make a new header, I'm just struggling with it though and I might change my mind again.
-I'm in the process of getting Jude and I ready for his 4 pre-operation appointments at UM. Starting at 10 ending... I don't even know when it will end, we'll be at the hospital all day basically.
-But first, I sold my carseat on craigslist! I have to meet the woman to do that before the first appointment so I should really be more pro-active about getting ready.
-We went to a bonfire Friday night at a family friends house. It was a going away party for our good friend Lisa. She moved to Texas over the weekend with her husband who's a border patrol person. They'll be missed, but it's a pretty exciting adventure for them.
-Sunday we went to one of Sydney's parades, she's in the Plymouth Fife & Drum Corp. Jude loved it.
-Jude's cute and gets into trouble a lot.

I think that's all. More details later. Wish me luck, I'll need it to get through the day in one piece.

For Those Who Haven't Seen It On FB or LJ...

... I present to you via copy and pasting, what the next few months looks like for me!

The near future: I need to finish and mail out Sydney's graduation announcements, and possibly make Jude's birthday party invitations just to keep myself occupied and get it done before everything else kicks up.
Within the "next 30 days": DNA testing, not to mention whatever court crap is going to follow that.
May 17th: Jude has 4 pre-op appointments at Mott. (Neuro-psych testing, opthamologist, surgery team appointment, anesthesia pre-op).
June 9th: Jude's surgery. We'll be in the hospital for approximately 5-7 days, at least one of those days will be spent in the PICU.
June 10th: My baby sister graduates from high school, and I won't be there. :(
July 10th: Sydney's graduation party.
July 17thish: I should be ready to start working again, if I can get a job.
August 9th: Jude's 1st Birthday.
Weekend after that: Jude's birthday party.
August 17th: My Birthday.
August 25th: My mum's Birthday, hopefully being spent in California, that would be a nice getaway at the end of this shit storm.
September 2nd: Classes start.

Not to mention, a few more things that may or may not happen within the next few months involving my pets....

I forgot to mention (take a shot for every time I said "mention" in this post) that I'm taking a cardio kickboxing class with my 2 aunts and cousin. It's 6 weeks long, Monday and Wednesday so it'll end right before Jude's surgery. It's going to kick my ass, I can tell. It's like 40 minutes of cardio work and then 20 minutes of toning and when I woke up today, my abs were killing me. That's a good sign though, right? I walked in the March of Dimes walk last Sunday and I'm walking in the Race for the Cure May 22nd. Go me! At this rate, I'll be less flabby by the time I start school which will be good because then I can resume strutting around campus with an air of confidence.

I'm such a geek mum. I got my Kushies AIO diapers in the mail today and I was so excited. Unfortunately, they're the next size up so they won't fit Jude for a while... Unless I put him in them anyway lol.

6 months!

Jude is 6 months today!

It's almost hard to believe it has been this long since he was born. He's so big now, and has tons of skillz.

Milestones this month:

- He's rolling like crazy.

- He prefers to be in his bouncy activity fun center of doom and excitement. He'll sit in that thing and bounce, play, laugh, and talk for hours.

- He isn't so cranky about being on his belly now that he can roll over.

- He sleeps better on his side/back.

- EVERYTHING he gets his hands on goes in his mouth and everything is targeted for him to get his hands on.

- He looks at me when I say his name.

- He gets excited and grabs my hands when I clap. He has even started kind of clapping the wrong way (I need to video-tape it, it's cute).

- He has tried 6 foods (rice cereal, bananas, apples, sweet potatoes, carrots, and green beans)

and has loved them all.

- He takes the spoon from me

and feeds himself, but he can't get food onto the spoon himself quite yet.

- He scooches on the floor a little.

- He loves the cat (not really a milestone, but his excitement and cat petting are adorable).

- He babbles on and on, usually in a "blahblahblah" manner, sometimes "dadadada" or "ooooh, aaah, gagaga" (another thing that needs to be video-taped).

- He can sit up without me holding him up, but he's still topples over from time to time.

- He's still extra clingy.

- He's starting to smack his lips.

- He makes pfffft noises a lot.

- He won't sleep on his own unless I'm babysitting at Lisa's house.

- He has no more stuffed animals he's super attached to because the jerk dog demolished them. :(

I'm supposed to try to find a job. I've looked and there's nothing around here, plus it doesn't help that I'm going to need weeks of time off within months of starting. I have humored my parents and applied to a few places, but I still don't see a point. :/

2 weeks ago we took him to a Detroit Red Wings game. It was tons of fun, and he

looked adorable in his jersey and skate booties he got for Christmas. Unfortunately, we lost

literally in the last minute of the game. He had fun and got excited when everyone cheered, after his initial shock from the loud noise of course.

It's so strange. Up until a few weeks ago, his surgery was going to be today. I didn't really think about it much until my mum talked about it yesterday and today and then it really hit me again. I think I've just been repressing the thought so I don't freak out about it. If I dwelled and freaked about it all the time, I'd get even less done, and that wouldn't be very good, now would it?