Still here...

We are still here-I promise!! It's been a busy few months, but for the most part we are all doing well. Here's a recent pic of the little miss: (look at the end of the post, I still don't know how to move pics on the mobile site. Sorry).

And if you didn't see me post this on Facebook, Bella's story and picture is up on the inspiration through art page! Here is the link: http://www.inspirationthroughart.org/meet-our-heroes


More updates coming soon! :)

An Update

A quick update...I have a much longer blog entry that I need to write and post, but as usual...there just aren't enough hours in the day.

And as usual..the drama with the little Miss continues.

We have a spinal tap under general anesthesia scheduled tomorrow to test for more big, scary words which our neurologist calls the "worst-case scenarios". Blech.

The last time we attempted a spinal tap a month ago, Bella managed to get it cancelled due to her coarse lungs sounds and the determination by the anesthesia team that she was/is an "anesthesia risk". Grrreeat.

I'm a tiny bit anxious, may be having a few heart palpitations, and really just want this over with. Do you remember Bella's last experience with general anesthesia?

Well, she decided to stop breathing.

Honestly, the child is a drama seeker.

So...prayers please for our sweet Bella, and this anxious mama's heart.

Thanks. :)

In other news with the drama queen, it looks like we are heading down the gtube path. I have so many mixed emotions about the gtube, which deserves it's own post. We've avoided it for a year, but Bella's swallow is getting worse, and I'm not sure we can avoid it at this point.

Everything we've been through with Bella, and I'm falling apart about a little gtube.

Sigh.

The pool is open, the boys are out of school, Alex turned six, and summer is here. Not to mention, the fighting between the boys is going full force. Some things never change.

At least it's normal. We really, really like normal around here.

I'll be back soon with more pictures and a longer post. I'll leave you with one of the many Alex quotes that have made me laugh in the last few weeks.

Alex: "You know how Drew and I always fight?"

Me: "Oh yes, I know".

Alex: "You should go to stop bullying speakup.com and report him".

And you, Mr Alex, watch too much TV.

Just sayin'.

Have a great Thursday everyone!

Favorite Things

I feel this blog has been all pessimistic and gloom & doom as of late, so today I decided to list some of my favorite things of this past week:

1. Dry Shampoo

Now you should know that until this past week I was a washmyhaireveryday kind of girl. Then (cue Hallelujah chorus) I found this cute little bottle by Tresemme.

Seriously...best.thing.ever. Now, every other day the morning routine is much simpler...and I love the way it makes my hair smell.

Did I mention it's only $5 at target?

Sigh...I puffy heart target.

ETA: A few people have asked so I should clarify. I tried the waterless foam for dry/curly hair and loove it (I didn't realize until after I posted that the bottle looks a little different than the picture I posted). It doesn't leave a white residue for me. Hope this helps!

2. A "day off" tomorrow!

Tomorrow...the hubby is babysitting parenting and I get to spend the day with a friend. Eating a hot meal without feeding anyone and wiping up spills. Not worrying about whether I'm spending enough time or doing enough therapy with Bella. No fights with the boys!

Instead I'm planning on adult conversation, starbucks and some shopping. Maybe, I'll even use dry shampoo in the morning. Nothing like living on the edge.

3. Yelling at the boys to "not run in the house".

Yes, you read that right. I was getting so tired of reminding them of this all the time. We've had two snow days and a school delay this week, and we're all tired of winter. Then, I realized how lucky that I CAN yell at the boys to not run. They are able to run, jump, skip, and act crazy. That's a wonderful thing. I hope can't wait until I can yell at Bella for running in the house. Amazing how perspective can change.

4. A sweet, unexpected card in the mail from a friend that they are thinking of us. Some days, I feel all alone and so discouraged. I really can't tell you how much the cards, texts, emails have meant to me the past few weeks.

5. This smile:

Need I say more?

6. A therapist's advice this week. I can't say it the way she said it, but basically-If there wouldn't have been an EEG, we would be so excited and hopeful at the progress Bella is making in therapy. Just because, we have a big, new scary word to add to Bella's chart doesn't mean, well anything different. We're still doing the same things, and BELLA IS STILL MAKING PROGRESS. A new scary word doesn't change any of that.

7. These Guys:

Pj's, bedhead, and all-I love these guys. Even though they exasperate me daily (sometimes hourly). I love being their mom.

That's my list. What are some of your favorite things this week?

Family Pictures

Family pictures.


That's one of the (many) things I've been slacking at this year. We had professional pictures taken when Bella was a newborn, but since then-nothing.


The other week however, a friend of my sister's came and took some amazing pictures for us.

I love pictures that capture the random moments of life-pictures that not only capture the image, but the emotions behind it.

Here are a few samples of the pictures Erin took: (and yes, they made me cry-in a good way).

All photos by Erin Steigerwalt Photography

Love that this picture looks like Bella and her mommy are having a conversation.

Bella: "Mommy thanks for buying me this dress."

Me: "Sure Bella, you know you needed one more. Just don't let Daddy see your closet, Ok?"

Alex: "What is wrong with you two?"

Craig: (through clenched teeth) "Would you guys cut it out and smile so we can get this over with?"

Katrina (my sister) and Erin (the amazing photographer)

These pictures are so emotional for me, because they not only capture memories which will last a lifetime, but they also represent the year we've had.

And oh, what a year it's been.

Thank you, Erin for sharing your talent with us.

Christmas Cards

In case you are wondering why you aren't getting any Christmas cards from us this year:

Any questions?

I did almost use the first picture; Alex's face is just priceless. I don't know if he could look any more pathetic. I forget what the meltdown was about exactly-I think it had something to do with not being able to hold Bella.

I've decided I'm too exhausted (both emotionally and physically) to dress up three kids again and try to get all three to cooperate at the same time for a picture.

So...from our house to yours....Merry Christmas!!

Tired

I'm sure I'll pay for posting this picture-

This is what I found walking into the living room the other night-they were both snoring I think:

I'm not sure who fell asleep first, but I have a feeling it probably wasn't the little one.



I LOVE this picture:

A little boy and his hero.

Trick or Treat!

I have a tiny confession.


Before we had kids, I never liked Halloween.


I guess I never saw the point. Growing up we never went trick-or-treating (unless you count the one time we dressed up as ghosts and went to bribe candy off our grandparents).


Remember that, Mom? I think I wore a white sheet with two holes cut out for eyes.



Yep, we went all out that year. (Just kidding mom, I remember it being a lot of fun!)


Back to my point-Do I have one? Once we had kids, Halloween suddenly seemed a lot more appealing. The kids love dressing up, it's fun to see what they want to be each year, and did I mention the FREE candy?!


This year our little tribe consisted of a Nascar driver (Tony Stewart), an Air Force pilot, and a little monkey.

The boys ready to fill their baskets!




Our little monkey

She loves her costume, can't you tell?

The kids had a blast! We went to a neighboring town for trick-or-treating and then met up with some friends for an impromptu pizza party. It was coooold walking around for an hour and a half in 40 deg weather.

Thank goodness for friends who had a hot cup of coffee waiting for us when we were done! Thanks Jeanne! Thanks also for letting us barge into your home and invite ourselves to supper!

Because we are gluttons for punishment, we decided to take the kids to a trunk and treat at a local church after that.

30+ cars for the kids to trick or treat from- without walking from one end of town to the other -plus hot drinks and food for the adults. Now that's my idea of trick or treating.

Yes, I am sold on the trunk and treating.

Even Tony Stewart needs a break now and then.

This is what happens on the way home from Grandma's house after a long day of trick or treating (Yes, that is Drew's head underneath the green blanket).

If only these pictures could capture the snoring sounds that were coming from the back seat.

For once I actually thought ahead and took pajamas along.

This was the little monkey at the same time the boys were snoring. You didn't honestly expect her to be asleep, did you? Everyone knows little monkeys can't possibly go to bed at 10:00. Sigh....


At least I have the hope of an extra hour tonight! Thank you daylight savings time!

Yes, I'm Still Here!

Goodness.


I'm not sure anyone is still reading this blog...it's been forever since I've posted. But since I use this blog as a way to preserve our family memories and because I enjoy blogging I'll keep updating-even if I'm the only one reading it!


If there are still readers out there-God bless you for hanging in there!


What's been going on in our family? Where to start?


Let's begin with Mr. Drew, shall we?


Drew:







-is loving first grade!


-had a birthday since I last posted and is now seven. SEVEN!!! Time flies.


-notices everything-and I do mean everything. He always knows exactly what everybody was wearing in school, which boys had on the "cool shirts" (cool shirts to this 7 year old boy are those with planes, monster trucks, or construction equipment on them), and while driving in a car notices anything unusual going on outside. Hmm...wonder who that sounds like? (Craig). His poor wife someday if she is a passenger while he is driving.


-played football this year (flag football with 6 & 7 year olds is very entertaining).



Alex:







-LOVES preschool!!!


-Although he loves preschool, he still thinks life is moving waaaaaay to slow. He has told me many times just this week that "Drew is older, but I'm almost as tall as him. Soon I'll be big just like him."


-completely adores his daddy and anybody else he considers "a big guy".


-is still entertaining, completely charming and exasperating all at the same time.





Bella:

Where do I even start? To say she is our drama queen would be an understatement. She has caused me to worry more and pray more in five months than any of the other kids did in five years.

-she continues to be our little night owl-preferring to go to sleep anywhere from 12-2am. Maybe someday I'll be able to get 6 straight hours of sleep again. According to Bella, I am asking for way to much.

-is a little snugglebug. I LOVE this!

Bella's vision is still not great-there are some concerns about this-among other things (that would be an understatement) and she has some developmental delays because of the vision problems. If you could say a little prayer for Bella we would so appreciate it! As a mom, I would do anything to be able to "fix" this, and it's completely frustrating that there is nothing I can do at this point. We have an MRI scheduled for next week. The last attempted MRI was completely awful and am hoping this one goes much, much better. Just thinking about it makes me want to throw up though.

So we wait....and pray...

I LOVE being Bella's mommy and feel so blessed that she is part of our family. When she smiles at me, it completely and absolutely melts my heart. NO MATTER WHAT I will always, always, always love her and be so thankful that God blessed her with us

.

I hope to be better at blogging (hmm...think I've said that before). If you are still reading-Thank you! And now...Bella's finally sleeping...I think I should do the same!

Sum, Sum, Summertime

Goodness gracious. I'm more than a little behind on blogging. As far as reading blogs go-well, let's not even go there.

I'm really hoping that things will return to a more "normal" state around here soon! (I'm using normal very, very loosely).

Hopefully, once the nighttime routine gets more settled, Drew goes back to school, and summer winds down, things will not be as overwhelming!

I've been awful about taking pictures, mostly because our "good" (again, using that term loosely) died and I've been using Drew's camera.

Poor Bella-I'll never be able to get these 3 months back, and I have very few good pictures of her.

So...here are some blurry pics of what we've been doing.

We took the kids to see the movie "Ice Age" at a drive-in theater. It worked great, because I could take Bella without worrying (since we just stayed in the car). Notice how impressed she is.





The boys were much more impressed. (I warned you the pics were blurry).

If I ever need help or have an emergency around here, I'll know who to call. This is the scene that greeted me after breakfast the other morning.

How can you not feel safe with these two around?

The long summer days and hard work of firefighting have worn poor Alex out. When I went to get him for dinner this is what I found: (yes, he does have shorts on)!

We also went to a Cleveland Indians game the other night-minus Bella.

It was the first time for the boys and they loved it. Actually, I think they liked the food and fireworks the most.

Or was that me?

The view from our seats.

Do I always look this tired????

LOVE this picture. Craig and mini-Craig.

If I ever wonder what Craig looked like as a little boy, I only have to look at Alex.

Look! Another picture of Bella. In her car seat and with her nuk. AGAIN.

I'm sorry I don't have any more pictures of you, Bella. Your mom is pathetic.

Does anybody have any camera recommendations? I'd love to hear them!