Sleep

Kaleb has been pulling this thing for a couple of weeks now where he will cry and cry for hours if you let him at bedtime. It is driving me crazy! He can get out of anything pretty much because of his medical issues. With Nolan we really just let him cry it out...which in all honestly didn't happen that often. 

But now with Kaleb...could the crying hurt his heart? Did he pull his g-tube out? Is his leg caught? We have a camera right on top of him but the smaller things are pretty hard to see. Not to mention he chokes himself and it makes it obviously hard to breath for him...which breathing is already an "issue". We recently found a bump on the back of his head, possibly related to his hydrocephalus so this makes me worry even more. His neuro believes he may even be having migraine type headaches so if I let him cry it out...does that make his head hurt more? Ugh... 

It has only been 34 minutes and I'm pretty sure I'm going to cave soon. We both could use a good snuggle anyway. 

New Camera

I went ahead and bought myself a Christmas present...early. That's okay right? I bought a Canon t3 Rebel DSLR camera. It came with two lenses and I'm having so much fun testing it out. Obviously I'm no professional but I'd like to think I could be one day. So the learning begins...

Crafts R'Us

I like to pretend that I'm crafty. Really, I have good ideas but they never seem to work out. Right now I'm sitting at my dining table and staring at all of the Christmas paraphernalia I bought to make an ornament wreath. I got halfway done and realized I needed more of the larger ornaments. Another craft abandoned. 

And now my table just looks like Santa threw up all over it and there's glitter everywhere. 

Sure I'll finish it eventually, I'm pretty sure I don't have a storage box with a label that says, "xmas-sparkly-glittery-jingly-items". 

Unfortunately this just means I'm going to have to take both of my kids into the craft store. Which, in-case you didn't know, doubles as a toy store.....
fake flowers = fishing pole and/or sweeper
ornaments = balls to throw
placemats = coloring pages
glue = glue (YAY...glue...)
yarn = jump rope

You get the picture. :/

Source: matt-and-becky.blogspot.com via Debbie on Pinterest

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Canine Medicine

Sometimes I'm pretty sure that any Trisomy parent could breeze through medical school and get their doctorate easily. Sometimes even, we are the ones that teach our children's doctors about Trisomy and related chromosome disorders. But when it comes to medical knowledge about animals, I am completely useless.

We have two dogs and a cat [I really don't know what we were thinking]. We recently decided to get both of our dogs neutered. Our big dog, Tucker, had his surgery last week. He did really well if you don't count the fact that he learned how to take off his cone quickly and pull out his staples. A week later was our little dog's turn, Yogi. That would be today. My hubby took him in this morning and within the past hour they called me to tell me they were about to take him back to the OR when they noticed recent blood tests came back concerning.

Something about his liver levels being high? The words liver shunt were also thrown in there. I think other words were, additional testing, blood tests, pre and post something, and then something about $91.98. I must have asked her a million questions and still have no clue other than the fact that something might be up with his liver? Oh and the testing is expensive. I definitely understood that.

So here's to hoping no more testing and everything is just fine. Because honestly...I don't want to become a self proclaimed expert in canine medical issues.

Yogi has our heart :) 

Reesey

The month of August (in 2010) was the worst month of my life. There was something wrong with my unborn baby and absolutely nothing could fix it. Since then I have enthralled myself in to stories of others who have given birth to babies with special needs, trisomy families, and even families whose children passed away at birth or way too early. Call me horrible, or whatever but it was what I could relate with...what I still relate to. In the beginning of my journey it was stories of other people, people I did not know, had never met. I still cried for them and my heart ached for their families but it wasn't personal.

I'm over two years into my "journey" and I've met so many wonderful people, children, families because of my special Kaleb. Now...unfortunately, I hear more often of awful things happening to kiddos. It's terrible. I hate it. It takes me right back to the beginning of my journey but even worse it envelops me entirely. I hurt so much for these families and wish so much that I could do more than give them kind words and warm thoughts. I've said it many times but it just isn't fair...kids should not have to suffer! 

Recently I found out about a sweet sweet little girl named, Reese ("Reesey"). I went to school with her mommy and later in life our paths crossed again at a mutual friend's wedding reception. After that I moved to Florida and we were only FB friends. We lost contact...but I often kept up with her ever growing family. She and her husband now have four beautiful daughters. Reesey is the third youngest. On Halloween they got horrible, awful news...Reesey has a brain tumor. My heart aches...deeply. 

Here is Reesey's mommy's update on her blog about what all has gone on. I know there are so many of you that are wonderful prayer warriors for my Kaleb, please say a little prayer for little Reesey and her family.

There is also a giveforward page set up for Reesey...

Diva Mom

Okay I need advice. How do you become one of those moms that do everything. And I mean everything!

I know everyone has kind words about my day to day with so many medical things going on but really, I need to step it up a notch. Part of the reason I didn't enroll Nolan in soccer this season is because I'm terrified...What if I can't live up to the soccer mom role? Right now I'm aceing it at being a "medical mom" but adding more to that? I cringe.

I want my kids in sports. I want to do crafts with them. How do moms do all of this and have a clean house? Or do they do all of it and their houses are all in rubbles from the dirt and mess? What's the secret women?

I'm not a neat freak by any means (ask my Mom...she'll set you straight), but the sight of toys and stuff thrown everywhere and underfoot...it makes me ill. My husband and I look at our house at times and we're just like, how did this happen? And we only have two kids. And those two kids don't have sports activities or friends over or craft projects all over the place.

Now that I'm feeling better (I'm being treated for a damaged right inner ear which has screwed up my balance for months) I finally have some energy so I really want to start crafts with the kids. I also want to take them all over the place. Parks. Pumpkin patches. You name it, we should be there.

Help!

And here are some crafts that I'm aching to do....

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Source: etsy.com via Erin on Pinterest

My Future Teenager

Dear Teenage Nolan,

This week you had your first real pimple. When you are 13 and tell me you got your first pimple I will refer you back to this post. You got your first pimple when you were 3 years old. Wow, what a first! I am so proud but a little confused as to why you got it. It wasn't like a little flat red mark...it was pulging with green/yellow stuff right in the middle of your nose. Today I took you to look for a preschool. In hindsight I should have popped it last night because that thing could have been a lady killer...literally. So today (after the preschool visit) I had finally had enough. I popped it. Maybe it was the right thing to do...any maybe it will emotionally scar you for the rest of your life. I'm not really sure. But I'm really glad that thing is no longer staring at me. Your Dad and I called you Rudolph a couple of times this week. I apologize, that was really wrong of us to do. I really hope you don't hate us when you get older, just don't ever forget about all of the hershey kisses I give you when you go potty in the toilet. Probably another one of my not so greatest moments...I'm human and I've made a lot of mommy mistakes. Kind of like posting a blog entry about your first pimple. :/

Other than that exciting news, you toured a preschool today. It was really neat and they actually go up to 2nd grade. Apparently their curriculum is amazing...you can skip a grade, get tested throughout your time at the school, and they teach you three languages besides English. It all sounds great and the reviews are stunning, a lot of parents say when their kids go to Kindergarten at an elementary school that the curriculum is too easy for their kid. But my only problem is what happens when at four years old you are smarter than me and start talking to me in Chinese? Yes, they teach ALL the kids (no matter age) Chinese, Spanish, and ASL. I think we'll try it and I'll keep my fingers crossed that you never cuss me out in Chinese. Spanish, English, and ASL cussing is okay though because I know at least a little bit in all of those.

I love you, future teenage Nolan.
[Even if you hate me and cuss me out in Chinese]