Another Random Post

Since it's been so long since I posted last, this post will be very random.

BAHA
Harlie will have her second stage surgery for her bone anchored hearing aid on February 12th.  It will be done at MCV in Richmond.  I really cannot wait to have this whole thing done.  When she plays at home her headband gets all askew, and then the hearing aid starts buzzing (feedback, probably because there's too much hair in the way).  It really will be so much better when it can be exactly where it's supposed to be and stay put!  I think it needs to heal for about six weeks before we can use it though, so we're looking at the beginning of April.  Whew, seems so far away still!

Harlie's School Stuff
Harlie is doing much better in school this year, than last.  They have been working on the AT family (sat, cat, mat, etc.).  That took some time, but I think she got it!  It's hard to tell because she can't say the words clearly enough that you always know what she's trying to say.  But, then they introduced the AN (man, fan, can, etc.) and AP (map, cap, lap, etc.) families.  Talk about frustrating!!!  For some reason, those are really difficult for kids with hearing issues.  And when I was working with her, she really couldn't hear the difference between man and map.

I spoke with her speech therapist about this last week.  She said that she has no frame of reference because she can't pronounce it herself.  She told me that kids who pronounce a W for an R (like Cindawella) will often write a W instead of an R because that's what they hear in their head when they say it.  Since Harlie can't say it, it's difficult for her to hear it in her head, you know?

It's quite overwhelming.  And I can't help but wonder what this means for her future schooling.  Harlie's cognitive ability is normal - but information has a difficult time getting in, and she has a difficult time getting the information out.  I owe it to her to do whatever I can to help her keep up with her peers.  But, I just don't know that I can do it all.  She would benefit from private speech therapy every day.  But, not only can we not afford that (it's about $100 per hour) I could never get that kind of time from a speech therapist (nor do we have that time in our life, either).  I would also like to get more academic practice and exposure in her day - but she's still just SIX years old and she gets TIRED after working hard for a few minutes.  I don't think I can fit more in her day.  Not to mention that Murphy has been taking up a lot of my time after school with his homework.  Third grade is the first year of real grades and he doesn't really care.  He's a bare minimum (or less even!) kind of kid when it comes to school work, like one word answers, instead of a full sentence (which always costs him points).

I know so many moms want to make me feel better about how hard it is to get a child to learn and keep up.  But, it's very DIFFERENT for Harlie.  Unless you know all I know, you just don't get it.  For example, she is six years old, and we are still having to ask her several times per incident to use three and four word sentences like "I want movie please."  In fact, I don't think we've even discussed teaching her to ask for a movie versus her saying "I want."  Until we get the I want on a consistent basis, I don't know that we can add in a "May I?" or Can I?"  Now think about what the typical six year old says and how much they talk.  Yes, Harlie is very different and it makes me very sad and scared of the years to come.  How in the hell is she going to keep up?  Well, she's not.  And that makes me sad when I know that her cognitive ability is there.

I volunteered in her class on Friday for their winter party.  I spoke with her hearing impaired teacher and we are having a meeting the week we get back to school to go over her communication modality. We've tried focusing on her verbalizations - but she just can't do it enough for anyone to understand her.  And she said as the material gets harder it's going to get very difficult for her to test and assess her when Harlie can't answer questions and tell her what she knows.  We've got to give her another way to let us know what she knows.  And I think the answer is going to be the communication device.  So, her HH teacher, her school ST, and the person who got us our communication device is going to meet to figure this out.   I think I'm going to have to learn a lot more about how to program the device and add photos, etc.  Because we are going to have to start focusing on it.  It's time consuming, but I don't think we have a choice anymore.  She clearly is capable of using it.  She will remember where a word is even when it's been weeks since she's used it.  Unfortunately, it's not going to be easy to make her to use it all the time, because not everyone knows how to or has the energy to make her.  Somehow, I have to get everyone on board (both her parents, her teachers, her nurses, etc.).

Feeding Therapy
Well, we've worked feeding therapy back in our schedule.  We see Allison every other Tuesday morning.  I hate that I have to take her out of school for it - but I believe Allison is worth it - and so is the importance of her learning to eat.  Last time we saw her she started working on getting Harlie to bite down (three times in a row) on a piece of puffed corn that was wrapped in a piece of fine mesh.  She's not ready to handle solids in her mouth yet.  It is amazing how complicated eating is when you don't get to do it as a baby.  All of her mouth muscles do not know what to do anymore since they never learned.  And now they are all weak (especially her jaw in general) from not being used the way they are supposed to.  Plus, her mouth is crazy, so that doesn't help.

I remember when Harlie was a little baby.  I used to tell myself that by the time she was ten, all of this would be behind us and it would be like it never happened.  HA!  But, I guess I had to believe that in order to get through that time.  She's six now.  And although I know a lot can happen in four years, I don't see her eating all foods as if nothing ever happened.

Eating is another thing that moms will try to make me feel better about by telling me how hard it is to get their normal kids to eat.  I have two of them myself, so I know.  And it is NOT the same.  It's not even on the same planet as getting Harlie to eat.  Her jaw currently doesn't have the strength to bite through a cheese puff.  Unfortunately, there's no feeling better about that.  It's just something we have to get through and continue to hope for progress.

Newtown
To be honest, it's been really hard to blog about my life when I think about all the parents of the children of Sandy Hook Elementary School (and everyone else involved).  It's really hard to talk about what's difficult/good about my life, when I think of what those parents are going through right now.   It's so incredibly sad.

Christmas Spirit
This one is not an easy one for me to write.  But, it's the truth.  And I'm hoping after I write this, I will feel better.  The Christmas Spirit has eluded me this year.  I LOVE Christmas.  But all three of my children have really been challenging for us lately.  And, Murphy and Cooper have driven me absolutely CRAZY.  I try asking/telling them to do what they need to do nicely, then I repeat myself.  Then I repeat myself a little louder and a little louder still.  Then I have to YELL.  For every single thing they are supposed to do.  Even getting them to hang up their coats takes an unusual amount of energy.  And multiply that with EVERY THING for all three, one of whom is non-verbal (who still needs help in the potty) and I never sit down!

Add my running in (which I have made a huge effort to do more of) and I am TIRED.  It has been exhausting.  We were going to take them to go look at tacky Christmas lights, but they were being so awful that night that we had to take that away.  And the worst of it was that they didn't even seem bothered by it.  And their behavior has made me not want to take them anywhere.  Like out in public.  We haven't taken them to go see Santa (they haven't asked, and there's really been no time - and again, that's out in public).

I've tried all sorts of ways to get the boys to cooperate - just a little even!  Even our Elf on the Shelf (Elfred) has failed to get them motivated to listen.  Maybe he's too lazy.  He should have left them a note or something.  Ugh.

Anyway, their behavior has been so crummy, that I think I'm still angry at them.  How awful is that?!  I just don't think I should reward that behavior with fun stuff.  We haven't made cookies.  Partly because of their behavior and partly because I can only get the boys half-way interested.  Harlie would not be excited about making cookies since she doesn't want to eat them.  She might help decorate, but that would be it.  So, I really don't want to do that because I HATE that she can't eat a freaking cookie.  So, that's more my issue, than the kids' fault.

I got a gingerbread house a few weeks ago.  It's still sitting in it's unopened box on top of the refrigerator.  I just don't want to do anything with them when they act like that.  It takes all the fun out of everything.  And I just don't have the energy for it.

So, it's now Christmas Eve and I feel like shit about everything.  Especially since I have my three children, all seemingly "healthy" and I am sitting here whining about their crummy behavior.  Not only am I thinking about Newtown, but I'm also thinking about all the moms that I know (through my special needs on-line support) who are missing their children that have passed.  And all the moms I know who are sitting in a hospital room with their sick child.  How can I sit here and feel the way I do???  What the hell is wrong with me?  I am normally SO much better at being positive than this!  And now I'm looking back, regretting the way I've handled things.

I should have written this weeks ago.  I just needed to write it to see it.  I just have to make the choice to be more fun - and inspire my children to want to make better decisions and want to listen.  Ha ha ha!  I know, I'm laughing as I write this.  But, seriously, I do make the choice (usually) to be positive in my life in general.  I just need to do the same thing now.  And I need to give them a consequence for not listening, instead of repeating myself till I want to cry.

Today, I think I might make them walk the dog when I get mad.  That way, the dog benefits, too.  Although it's rainy and yucky today.  Maybe I'll make them walk up and down the stairs.

Tom is on his way home now.  And I'm really hoping that he can bring some excitement and joy into this house.  On Saturday he went to Pittsburgh with some friends.  They went to the Steelers vs. Bengals game yesterday.  The Steelers lost and are now done for the season.  This means that Tom will shave his beard (or maybe he has already?).  We'll see when he walks in.  I'm looking forward to seeing his face again.  And I hope he arrives well rested and ready to parent!

Parties
We have been lucky enough to be invited to some great Christmas parties.  I will have to post pictures later because my laptop (with my photos) is currently broken thanks to the children.  Tom will have to fix it.  Considering my mood lately, I am very thankful to have these friends that invited us to their parties.  They were bright spots in gloomy days.  So more on that later.

Okay, I must go and muster up some fun in this house.   I have to let go of some anger and forgive my children more quickly when they completely ignore me and don't seem to learn from their mistakes.  I can do this, right?  Oh someone please tell me I'm not crazy, haven't lost it and that I'm not alone.

As always, thank you for reading and continuing to support me and my family in so many ways.  I do always feel better after telling you all my stuff.  :-)  My next post will be better.  I promise.

Merry Christmas and much love!
Christy xoxo

Family Photos

Super Bowl Sunday, we super excited Steelers fans headed to the front porch in all our Steelers attire for family photos.

And, as usual, our three wonderfully cooperative children sat still and smiled sweetly, for photos.  

NOT!

Ahhh.  There it is.

Good enough for me!

And, just in case you're wondering... yes.  I do see that Murphy's hair is messed up.  He has the worst hair.  Okay, I know it's not the worst.  But, it is not an easy head of hair to work with.  It is full of cowlicks.  And it needs to be short or long.  Any length in between and it becomes unmanageable.  I like it short, but that means we buzz it at home (which makes it really short and better in the warmer months) or we take him somewhere often.  And it's hard to keep up with often.  And honestly, we are so used to his crazy hair that we hardly notice it anymore.  It's not until I look at photos that I think, "Oh, how did I let him out of the house like that"?! Oops.

A perfect example of that can be seen in the Pinewood Derby photos.  If you click on the photo of Murphy standing next to the track, you can see his hair sticking up in the back.  Yep.  He dressed in his Cub Scout uniform and I let him walk out the house.  Just like that.  Bye Murphy!  Have a good time!

Oh well.  I suppose there are worse things.

Oh, and just in case you're wondering...Cooper has the EXACT same hair pattern.  Look at this photo for proof...

It is just wrong to have to spend time on a boy's hair style.  Wrong.  Like I don't have enough to worry about.  Geez.

I have SO much more to blog about still.  Lots of new posts below, too.

Thanks!
~Christy

The Steelers

... are going to the Super Bowl!

I might have mentioned in the past that Tom is from Pittsburgh and, as required, is a huge Steelers fan.  I must say that I feel lucky to have married into a Steelers family.  It is a fun team to watch.  I love how people refer to their playing as "Steelers Football."  You won't hear anyone say, "They just aren't playing Jets football."  And the fans are unmatched.  First, they are everywhere.  They mourn a loss and celebrate a victory like no other!!!

I might have also mentioned that this particular group of people are the Steel City Connection.  And we just got a new home at the University Bar and Grill.  Last week's game was a little overwhelming for the new place.  They just didn't realize that Tom was serious when he said, "Expect about 130 to 150 people".  Oops.

Well, they had their game face on last night.  They were more than prepared.  And they were awesome.  We didn't have to wait any time at all for anything ordered.  The place was packed.  And loud.

Tom and me at the start of the game.

Mary Alice, Alisha and me.

This is just one part of the restaurant.

Me and Alisha celebrating with Aaron peeking in the background.

Ryan celebrating.

Teaching Donna and Aaron (newbies to the Steelers Nation) how to celebrate.  Psst... they are from NY!

Another part of the restaurant.  And more celebrating.

It was a hugging kind of night.

Me and Donna.

Donna and Aaron.

Alisha and me shortly after the big win!

Alisha, Ginger and me.

Good times!  Two weeks to the Super Bowl!!!

Go Steelers!
~Christy

Road Trip to Pittsburgh

I hate that it has been another week since my last post!  But, last week was really busy and I was really, really tired for a few days recovering from the marathon.  Ahhh, I love saying that!  I apologize now for you getting sick of hearing about it.

So, on Sunday, after the marathon, Tom and I got up early (grrr!) and got in the car to head to Pittsburgh, PA for the Steelers vs. Patriots game.  It sounds crazy that I would agree to such a thing.  But, after much discussion and thought, I decided that I would probably get more "rest" going on the trip, than staying here with the kids by myself.  So, many begging and logistics issues later (it is NO easy task getting coverage here), we were on our way.

We made good time and the plan was to drive straight to the hotel so I could lay horizontal for a while and do NOTHING.  Ahhh, what a thought!!!  Instead, Tom surprised me and drove straight to a... gulp.... SPA!!!  Hallelujah!  He packed a bag with a small bottle of flavored vodka, soda and a glass and sent me on my way.  I got a 75-minute massage (WOW!) and a manicure.  As good as it sounds to get a massage - it was not all good.  My muscles were tender!  So, it hurt, too.  But, I definitely think it helped get me moving easier.  Here's a funny video to illustrate what it is like...

http://www.youtube.com/watch?v=m-hCuYjvw2I

After that we went to Primanti Bros. for a sandwich.  Yum!  They put coleslaw AND french fries right ON the sandwich.  Then it started to rain.  Bummer.  And it was getting pretty darn cold.  Ew.  Not a good combination.  So, while Tom was out with a friend, I went to the hotel to get ready to go out for the game that night.  I really didn't think I had the energy (or the desire) to go out in the cold, wet night for the game.  The childless room and king-sized bed were calling my name!!!!  But Tom promised the rain was almost done, and so I went.

We ended up having to walk a good 15 minutes to the stadium.  We went to one of Tom's friend's tailgate party for a little bit (thanks, Megan!) and they said they were going to head over around 7, I think.  So, we left a little earlier so I could walk the pace I needed to walk.  Surprisingly, it wasn't as painful as I expected.

We got to the stadium and I was hungry again.  Hey, I burned over 3,000 calories the day before - I needed FOOD!!!  So, we looked around and nothing looked really good.  Until we found a Primanti Bros.!!!  So, yes, I ate ANOTHER sandwich.  It was good and I had no problems eating another one.  Crazy, huh?

Then, it was time to head to the seats.  Uh-oh.  Stairs.  And lots of them.  I made it up (no fun, there!) and decided I could drink no more - I couldn't risk having to go to the bathroom.  I was not going to walk back up those stairs!

The rain had stopped.  But it was cold.  And we weren't completely prepared.  It had been over five years since we'd been to a game.  We forgot a blanket.  Bummer.  Tom ended up having to buy one.

Here's us at the beginning of the game:

I am happy to report that Tom shaved the beard on Monday.

Well, the game stunk.  The Patriots walked all over the Steelers and it was terrible!  There was NO energy in that stadium.  And the guy right behind me complained/commentated the entire time.  And since it was an 8pm game - I was pooped by the end!  Morning came too early and again, we headed to the car for the long drive home.  Even though the game was a bust, we still had fun.

Thank you to Jennifer, Dawn, my Mom, Kelly and Maggie (my nieces) for helping us out that weekend.  In order for us to be away, we need a nurse for Harlie and a sitter for the boys.  Logistics for a trip is a nightmare.  Which contributes to why we don't do it often!  Jennifer, especially, pulled a lot of hours.  We couldn't have survived the weekend without all their help.  So, thank you!!!!

Superbowl Champs

Yes, we're Steelers fans. Can you tell?



We took some quick family photos before Tom left to go watch the game (at 12:30!!! - the game started at 6:30).



Actually, Tom left to go "tail gate" with all the other fans in the parking lot of the bar we all gather to watch the games. I couldn't leave that early - had kid duty, of course - so I missed the party. I got there later and still had a lot of fun.



Just a few of the Steelers fans...



Tom said that while they were partying, 7 police cars showed up. The officers told them they were fine - but they had to check it out anyway. Tom suspects a Baltimore Ravens fan that walked by called the police. Ahh, sore losers. But all was well and no one got in trouble.





Well, it was a great game. As classic Steelers games are, they had us all having heart attacks there near the end. But they pulled it out and the bar went crazy. Good times....

Today we went to DC for Harlie's orthopedics appointment (to get a second opinion on her spinal issues). I'll write more about that later.

Take care,
Christy