Wednesday, November 30, 2011

Great day at school and Brandy's baby!

I’m at school with Harlie today (no nurse today), so I’m going to try to get some blogging done. 

Yesterday (Tuesday) I had a little pity party.  It was picture make-up day at Harlie’s school.  She missed the first takes because she was sick that entire week.  So, I picked out two shirts for her to wear, the one I wanted her to wear, and a back-up just in case she drooled all over it. 

Clearly, I should have reversed the order.  I should have put on the back-up first, and then had Terri (our new nurse) change her shirt right before pictures.  But, I figured pictures would be first thing in the morning and certainly she wouldn’t have drooled all over her shirt by then.  I was wrong. 

And it just made me mad that my 5-year old drools.  It went away for a while.  But, ever since her 6-year molars started to come in, it’s gotten awful.  There’s no room in her mouth for more teeth.  And I know it hurts her – even though she doesn’t complain.  She puts her fingers in the back of her teeth – something she’s never done before.  She has never “chewed” on anything – even as a baby teething. 

Pictures were at 8am (she gets to school at 7:45) and her shirt was dry when I dropped them off.  I had her wear her HME instead of her PMV to help reduce the drooling.  She seems to drool a lot more when wearing the PMV – I guess it takes more effort to stop breathing and swallow when wearing it.  I don’t know. 

It just made me mad.  I hate the drooling.  And I know I’m not alone.  Drooling is a major issue with a lot of mom’s with special needs kids.  It’s just one more crummy side effect to deal with. 

I was complaining to my niece, Maggie who came over to visit last night.  I said (okay, maybe I sort of yelled/whined), “What kind of mom has to pack back-up clothes for photos?” And Maggie said, “One with an awesome daughter, that’s who.” 


She’s right.  Harlie is awesome.  And I AM lucky.  I know that.  But, sometimes the little things get to me.  Luckily those pity parties don’t last that long.  Especially when I have the kind of support I get from my family and friends.  Thank you all for that!

Right now, we are in Harlie’s hearing impaired class.  It is my first time watching her in this class.  I can't remember if I told you already or not.  But, we changed up her days a little bit.  She now spends circle time in the morning with her general education class and then goes to the hearing impaired classroom for an hour and a half to get more concentrated instruction.  I'll talk more about that later since we have an IEP meeting next week.  

Anyway, there are just two girls, Harlie and L.  And I just heard Harlie count (verbally) to 30.  Her numbers 1 to 10 were clearer than I have EVER heard!!!  I admit, I cried a little.  She was understandable by anyone.  And even her numbers in the 20s were good!  Then I feel bad for complaining about drooling.  I guess you have to take the good with the bad.

And after seeing how she is in this class compared to how she is in her gen ed class, I am very thankful.  She is a different little girl here.  She participates.  And she answers questions. 

Right after HI class is lunch.  So we went straight there.  And for the first time, Harlie ate her pears.  She has never taken a bite of her food for me when I've been with her at school.  But, she drank some milk and almost entirely willingly, ate her pears.  And during lunch, she smiled at her friends.  And they even fought over who got to sit next to her.  And she used her device to say their names during lunch.  It was really cute.  I have to say that I actually enjoyed my time with her at school today.  It seems like she's liking school. 

After school, I packed up the kids and me and Maggie went to the hospital to see Brandy and her new baby girl, Brodie.  Maggie sat out in the lobby with the kids while I went in and visited with Brandy.  I was dying to meet Brodie and I've really been missing Brandy.  Here she is!!!

Me holding Brodie.

She looks so much bigger in the pictures than in person!  She is a beautiful baby!!!

Hello cuteness!
After I left, I took over for Maggie and let her go meet Brodie while I stayed in the lobby with my crazy kids.  When Maggie came back, Brandy and her husband Joe were standing behind her.  They were awesome enough to bring Brodie to the door to the lobby so Harlie could see her!  And she was awake!

Harlie acted all bashful and weird.  She definitely smiled at the baby and wanted to get a closer look.  So I picked her up and let her see her.  After we said goodbye (the boys started acting crazy and I had to get them out of there) we closed the door, and then Harlie started crying.  Like sad tears.  I think she misses Brandy.  It's times like these I wish she could talk and tell me what she's thinking. 

Now that Brandy's had her baby, she won't be working at all for a while.  And it's hard to know that we won't see her four days a week anymore.  She is part of our family.  And we love her.  And I miss her!!!  

Well that's it for now.  Thanks!

Monday, November 28, 2011

Quick One

I hope you all had a Happy Thanksgiving.  We did.  We had most of my family over to our house.  Tom made a wonderful dinner.

Here is a picture of the vegetables he roasted (before he roasted them)...

Aren't they beautiful?  And they were yummy!

Tom and I did something different this Thanksgiving.  We started the day off with some exercise.  I ran the 5-mile Deep Run Turkey Trot.  And then I went back home and picked up Tom and we both did Adrenaline.  It is an hour long outdoor fitness class.  It was great.  There was a huge turnout.  And we had a lot of fun.

It was a very busy holiday.  And I was left with no time to blog.  I wanted to write something about how we're so thankful.  But, I think you already know that.  So, I'll spare you.

I'll jump to today instead.

The weather has been great so the kids have been playing outside a lot.  Yesterday, a group of kids in the neighborhood set up a lemonade stand.  So, today Murphy came in and asked me if he could sell some toys they don't play with anymore.  Of course, I said no.  A while later I went out to get the mail.  And I found Murphy and his friend selling leaves, and those flower-grass things you see sticking up from the upside down recycle bin.

They were also drawing pictures on a pad of paper - and selling their drawings.  Here's the sign...

All you really need to know is the beginning - Drawings are $1.  PS - if you don't have a dollar, you can pay .25 or draw your own.  Ahhh, they are funny kids.  I asked them if they were distracting drivers as they drove down our street and they said they were, "entertaining" them.  Nice.  Of course I had to tell them that no one could read their sign while driving.  And I had to tell them that no one would buy their leaves considering they were dead leaves and they were everywhere!  After looking around, Murphy nodded in agreement.

I then told him that if he wanted to sell his artwork - he needed to take more time with his drawings.  So, he went inside and got some supplies.

When I spent some time looking at this "display", which I think was very clever of them, he said, "Mommy, they are not everywhere."  Which is true.  This plant (whatever the heck it is called) is not in every yard.
I have to give them credit for their display.
Soon the whole family ended up at the end of our driveway.

I can't believe it, but they actually "made" $15.00!  One mom drove by and purchased several drawings for $10.  And then a neighbor purchased a few for $5.  Honestly, I feel terrible!  So, Murphy is going to take them some cookies tomorrow.  Tom and I made pumpkin whoopie pies last night.  And I have to say that they are pretty darn good.  While I can appreciate their desire to make some money - I really don't want them out there asking for money, you know?  So, I will feel better if I think that they got something for their money.  And I think that's an important lesson for Murphy to learn, too.

And the evening ended on a positive note - Brandy had her baby girl tonight - a week after her due date!  Brodie Myra was born at 6:56pm and weighed 8 pounds, 6 ounces.  I told Harlie that Brandy had her baby and she smiled.  Harlie's been swaddling her baby lately.  I think she's practicing!  I can't wait to take Harlie to meet Brodie.  That's going to be fun!

That's it for now.  More later!

Friday, November 18, 2011


So, as I spoke in an earlier post about my worries, Cooper's preschool issues was on the list.

He just started in this preschool this year - so it's new to him.  His birthday is September 26, and the cut off to be in the three-year old class is September 30, so he just barely made it.  One of the main reasons why I moved him to this preschool is because they have a policy that the kids don't have to be potty trained until age 4.  Great!  No pressure.  OF COURSE he'll be potty trained by 4.  Right?

Anyway, in short, his teacher harped on two things since the beginning of school - 1) He's not potty trained (nor is he ready or willing) and 2) He's "high energy.  REAL high energy."

Well, I didn't mind the first couple of times.  But, come on.  What am I supposed to do about those two things?

One complaint was that he wouldn't sit still for circle time.  What I wanted to say is, "Well maybe you should spice up your circle time."  But I didn't.  I just said, "Well, we don't do circle time at home, so I don't know what to tell you.  That's why he's in preschool."  I told her I had already spoken with his pediatrician who told me - WAY too young to be diagnosed - and you just have to get through these years.  He just turned 3, for crying out loud.

At our teacher/parent conference last week, I briefly explained that our life is... different.  And that I need help teaching him what preschool teaches.  That's why I signed him up for the 3-day program vs. the 2-day program.  He needs the instruction.  He needs the structure.

But by the next week's end, I couldn't take it anymore.  Every day, I heard the same thing.  It got to the point that I dreaded walking into that building.  It was awful.  And most days he would come home in the same pull up that he went to school in (they require pull ups vs. diapers) and it would be soaked!  So, I know they weren't taking him to the potty consistently.  And on Friday she told me that "He was real high energy in music today.  REAL high energy.  And he pooped today, which is fine, but he needs to tell us when he goes."  Yeah, okay.  "Hey, Cooper, did you hear her?  You need to tell her when you go poop, okay?  And while you're at it, go on ahead and tell me, too, okay?  Great.  I'm glad we had this talk."

For real?

This kid is so anti-potty that I don't know what to do.  He asked for a small bag of M&Ms the other day and I told him he could have them if he just sat on the potty - just SAT on it.  Nope.  He said no and walked away from the M&Ms.  And never asked for them again.  Is that normal?

The bottom line is that he has no desire to use the potty.  He cries when we make him sit on it.  Do I keep on making him sit on a regular basis (like before bath, bed, etc.) or am I just making it worse by making him?  Ugh.  I absolutely hate potty training!  And keep in mind that I am spent.  It took two agonizing years to train Harlie.  Granted, we confused her by her surgeries which required her to go back into diapers multiple times.

Anyway, I just decided that I couldn't take it anymore.  And if I felt they way I did about walking into that building - how did he feel staying in it?  So, I called the director and told her my concerns.  And she found another classroom that he would fit into.  One less high energy.  The only negative was that it was a total different schedule of days.  But, oh well, it's worth it if it's a better place for him.  They let me bring him on Wednesday to try it out and see how he did before we made the switch.  And he did great.  And the teachers seem willing and able to handle him.  So, we made the switch.

I want to make it clear that he's not a bad kid.  Just like she told me in the parent/teacher conference a couple of weeks ago - he's very sweet and shares with his friends.  She even described him as "kind."  It kills me that we had to move him.  But he doesn't seem phased in the least.  His teachers said that he's comfortable in the class and they said that he acts just like a typical 3-year old.

So, I feel better.  And hopefully he is happy.  And hopefully things will stay that way.


Sunday, November 13, 2011

2011 McDonald's Half Marathon

I am very happy to say that I had a GREAT time yesterday running the McDonald's Half Marathon!  I know it was the right decision and it was the running boost I needed to remember how much I enjoy running.

Since we lost our point-and-shoot camera, I couldn't take any photos before the race.  Bummer.  Tom dropped a few of us off downtown and we met up with my running group in a building to stay warm before the race start.  I think it was in the 30s.  It was cold.

The half started at 7:30.  And it didn't take long for us to warm up a little.  While Tom was waiting to see us he watched some of the 8k runners.  Here's a weird one for you...

Not sure what that's about.
We saw Tom between miles 1 and 2.

That's me with my arm up in the center.
 Then again at mile 4.

Heather, me and Niki at mile 4.
The three of us ran the marathon last year and we trained together again this year.  But, Niki ran the Marine Corps Marathon two weeks ago and Heather was battling an injury, too.  So, that's how we all ended up running the half together.

Miles 6 and 7 are in Bryan Park.  The three of us stayed together until then.  I was feeling so great, that I went on ahead and picked up the pace and ran ahead.  I couldn't believe how great I felt.  It was awesome to be able to run and not have pain - other than just fatigue as the miles went by.

The next time I was supposed to see Tom was at mile 8.  I looked for him, but didn't see him.  He did not expect me to be running faster than usual.  And he said it took longer to get there than he anticipated, and he thinks he missed me by just a few minutes.

Miles 7.5 to the finish is the same course as the marathon.  And as I ran, I vividly remembered exactly how I was feeling running those miles last year.  They were awful.  And it felt great to be feeling strong again.  And I had to wonder, what if...  But it was only for a second.   Brook Road is a particularly hard part of the marathon course and that's where you see some good signs.  My favorite this year was "Worst Parade Ever." So funny!

I kept on looking at my pace and doing the calculation in my head to see if it was possible to beat my best time.  I couldn't believe that I was running in the 8-minute per mile range.  And maintaining it!
I knew it was going to be close.  But, by mile 11 I knew there was no way I could make up 3 to 4 minutes.

As I was running the last mile, I started to run faster.  And I couldn't believe I still had so much energy.  I think my goal for now will be to work on my speed and learn how to figure out when to pick up the pace to time it so that I have nothing left after the race.

I didn't see Tom again until the very end.  And he said he barely caught me.  He had just asked a person if he could slide in beside him to get to the fence and then there I was...

Me at the finish - just up ahead.

All done.
My time was 2:01.  My best half time is 1:58 done at this race in 2009.  I had NO idea I could have gotten a PR (personal record).  If only I had listened to Heather and Niki, who told me to run ahead earlier.  Ugh!  Just a few minutes would have made the difference.  I definitely had it in me.

But, regardless of that, I had a great run and that was my ultimate goal.  It restored my love of running.  And I do think that the Half Marathon is a great distance.   It allows you to dig deep and ask a lot of yourself, without putting you into complete agony.

Murphy and me.

Me, Tom and Murphy

Natalie, Heather and me

John, Katy, Heather, me and Natalie

Heather and me
Oh, as I was coming through the food path after finishing, I saw a girl who looked distraught.  I went up to her and asked her if she needed a hug and she started crying and through tears said, "Yes."  Then she looked at me and said (while crying), "I did it!" And all I could say was, "Congratulations!"  I have to say, she made me cry, too.  You just never know what battles people are fighting.

After we were done, we went and grabbed a few recovery beers down the street.  Then Heather and I walked back a few miles to cheer for our marathon-running friends.  They all did great - I think every single one of them beat their times from last year.  Well, one was a first timer - and she did great, too.  Congratulations, Katherine!  When they arrived at the restaurant, they told Tom that they missed his support along the course this year.  It made me sad for them.  He really was awesome last year traveling to so many places along the course to cheer us on.

That night some of us met for dinner.  Good times.

Anna, me, Heather, Allison and Katherine
I see fun running in my future.  Running the Half was perfect.  It allowed me to have a great run, which was exactly what I needed.  And I'm not too broken down that I can't do anything for weeks.  Perfect!  Now I can focus on my next goal... getting a PR at the Shamrock Half in March.

Congratulations to all the runners who ran this weekend!  And thanks to all the supporters who cheered us on along the way!


Friday, November 11, 2011


I don't know where to start.  So many things are stressing me out lately.  Maybe if I list them out, it will help me organize my thoughts and worries.

1.  Harlie's IEP (individual education plan) changes (which we are currently working on).
2.  Harlie's medical issues at school.
3.  Cooper's preschool issues.
4.  Nursing schedules.
5.  Jaw surgery for Harlie - working on second opinions.

There's more, but those are the biggest right now.

I'll start with Item #2.  Harlie's medical issues at school.

Did I tell you that we found a new nurse?  I can't remember.  Anyway, Terri's been with us for 2 weeks now (which I think is 6 days of working so far).  So, yesterday (Thursday) I told Terri to take Harlie's cap to school and put it on her for an hour at a time to see how she does.

A cap is a piece of plastic that goes over the trach, and completely stops any air from being able to go in or out, forcing her to breathe through her mouth and nose.  We put it on her Wednesday after school and she did great!  It is much harder to inhale for her than to exhale, so that's the real test.  Anyway, so following my instructions, she waited till Harlie got settled in, and went to put it on her.  Harlie's interpreter saw what she was doing, and told Terri she could not put it on her because she needed to have her PMV (or speaking valve) on to talk.  Terri, being new and not wanting to rock the boat, didn't want to argue with her, so she put the cap away, and put her PMV back on Harlie.

To give you a little education - the trach is located below your vocal cords.  Your vocal cords work by air passing through, causing a vibration.  Air passes through them when you breathe.  But, since the trach is below the vocal cords, air doesn't get a chance to travel through them.  So, no sound can be made.

The PMV is a one-way valve that allows air IN through the trach but not OUT.  That forces the air to exit via the mouth and nose, which means air now can travel through the vocal cords, thus sound can be made.  Which is also why the PMV is called a speaking valve.  It is called a PMV (Passy Muir Valve) for the people who invented it.

Now, put a cap on the trach and ALL the air travels through the mouth and nose (just like a normal person), which means air travels through the vocal cords, and sound can be made.

So, as you can now see, the interpreter telling Harlie's nurse to not put the cap on was completely WRONG.  She can speak with either on.  But there are more important issues here...

1.  There is not another person in that entire school that knows what Harlie needs medically.  And I realize that there is no way that her interpreter should know all that stuff.  Which means she has NO business telling Harlie's nurse anything when it comes to her medical care.  Period.

2.  Several staff members have already questioned her nurses on several different things.  And I don't mean, "Oh, so why do you have to do that?"  I mean, "What are you doing and do you have to do it now?"  I can't tell you how bad it could be if Harlie's nurses had to consider the staff member's reactions every time she had to do something with Harlie.  That is a very dangerous road to go down - it's something simple today, something life threatening later.  And I just cannot allow it.  We (her nurses and I) are very respectful when we have to enter the classroom.  But that respect needs to go both ways.  And let me just tell you - none of us want to be there.  I wish we weren't needed.

3.  If her nurses don't feel comfortable there - they will quit.  And I will be pissed.  We need our nurses.  And I know they get paid squat.  I want them to like this job.  I want them to be happy.  And if they feel like every time they have to do something with Harlie that they are making someone mad or uncomfortable, they won't want to do it at all.  Not a good situation at all.

So, I sent an e-mail about this last night.  And for some reason it didn't go through. So, I had to send it again this afternoon.  Hopefully we can reach an agreement that we all just need to get along and work together as a team.  After all, we all want the same thing - for Harlie to be able to learn and be safe at the same time.

On the same medical issues subject.... I received a call today from a nurse with the school system.  She is a registered nurse (RN) and wanted me to know that they wanted Harlie's teacher to know how to suction Harlie, should there ever be an emergency and Harlie's nurse was unable for whatever reason (she was in the bathroom, which is down the hall, for example).  BUT, she said that since her teacher is not an RN she was not allowed to suction past the opening of the trach. Which basically means she's not allowed to suction at all.  So, the whole training thing is pointless.

Suctioning means you're using a catheter and inserting it in the trach tube (cannula) to suction out mucus from the cannula which is about 6mm long.  So, if Harlie has a mucus plug (a sticky ball of mucus that gets stuck in the cannula) and Harlie is unable to cough it up to the opening of the trach, she is not allowed to insert the catheter deep enough to suck up the mucus plug.  So, should Harlie not be able to breathe because of this plug, she won't be able to do anything to help her.

And this, my friends, is County policy.

So, I told this nurse that this policy is the same as telling a mother that if their child chokes on a hot dog at lunch, they will only be able to do the Heimlich Maneuver halfway.  What about CPR?  Only halfway, too?

What the hell kind of policy is that?!?!?

So, she says, "well in a real emergency, we would do whatever we had to do."  Really?  I told her I was hardly comforted by that, since the policy covers their ass from having to do anything.  Well, okay, I didn't say "ass."  But, I told her I was not comfortable with that policy.  It makes NO sense!!!  Who in the hell wrote that?  Certainly not a physician or anyone who has ever worked with trachs before.

It's actually quite scary.  But, clearly, not a concern for 99.9% of the moms of kids who go to school.  Just me and a few others scattered about the entire county.  Oh brother.

While I realize (and pray) that the scenario of Harlie's nurse being unable to suction, and Harlie being unable to breathe is slim to none, the fact that that policy exists is extremely bothersome to me.  Clearly, I have to make some phone calls.  Great.  Add that to my list.

Which reminds me, Cooper and I were coming home from preschool the other day when he says, "Mommy, I want chicken nuggets and french fries."  And I say, "But we don't have chicken nuggets and french fries."  And he said, "Whaaaat?!  Oh, great."

So, last night I was supposed to go down to the Expo, pick up my race packet and then head over to a friend's house with my running group and have dinner to carb load and have fun.  But, I was so upset over what happened yesterday, and I knew I had to send out that e-mail stat, that I just couldn't change gears, and go out and have fun like I was totally fine.  Because I wasn't.  Too many issues to worry with that I just WISH I DIDN'T HAVE TO WORRY ABOUT!!!

And I can feel how tense I am.  And it feels awful.  Luckily, I got a massage gift certificate for my birthday.  OH!  I haven't been able to tell you about that yet!  If you know that my birthday is in December, you might be confused.  I'll clear that up soon.  I hope.

So, the Half Marathon is tomorrow.  And I just haven't had the energy or the time to be able to get excited.  Which stinks.  I hate to be a complainer - but the past 9 weeks have been really difficult and straining.  I always feel like I'm on the verge of tears.  And I really am pleased with how well Harlie's doing.  But I get constant reminders of all she and we have lost and how difficult things are going to be for many more years.  And I just wish I could be a regular mom sometimes.  One who doesn't have to worry about suctioning or stupid policies that would endanger my daughter's life.

I was feeling particularly down this afternoon as I was racing to the Expo to get my packet.  I was late (as usual, despite all my efforts) and my friend Heather called and said she already picked up my packet - and switched my bib from the full marathon to the half for me.  Awesome.

I don't know what I'd do without my friends.  Especially Heather.  When I feel like crap, she makes me laugh.  And then I feel like myself again.  If only for a brief moment.

So, from this point forward, I am going to relax, and think about running with my friends - Heather, Niki and Natalie - and having fun.  I will run in this beautiful fall weather and I will soak in the cheering of the crowd.  And I will have fun.  And I will not worry about my time, because we'll probably gab the whole race.

And then later on that night we'll go to dinner with my running group.  I hope.  Because I just got a call from my nurse and she cancelled on me.  So, now I hope I can talk one of my other nurses into coming.  UGH!!!!!

Seriously, I'm going to have a GREAT time tomorrow.  I'll tell you all about it later.

Thanks for reading.  And thanks for always being here for me when I need to talk.
~Christy xo

Wednesday, November 9, 2011

Harlie's "talking"

This has to be really quick... but I want to tell you how great Harlie has been doing lately.  She is really trying to talk!  She repeats everything you say.  She even sings the songs to shows on TV!  Her two favorites right now seem to be the song from Cat in the Hat and Wild Kratts.  She mostly hums, but you can totally tell what she's singing, so that counts.  Although with the Cat in the Hat song, she can definitely say "go, go, go" clear as a bell.

I really can't believe how hard she's trying.  And this growth seems to have come so fast.  Who knows where we'll be by summer!!!  I know it's not going to be all smooth sailing.  Her mouth does not make it easy for her, that's for sure.  So far, she really can't seem to be able to lift her tongue to the roof of her mouth or to her top teeth.  And I think that will make it very difficult for others to understand her.

Harlie had a fabulous speech therapy session with her private ST last week.  And my homework this week was to think of some specific words that we want her to learn how to say.  Last week they worked on getting Harlie to touch her lips together.  It really amazes me how many things that normally we don't have to work for - but she has to work hard for every little thing.  Like touching her lips.  Or raising her tongue.  Or breathing through her mouth and nose.

And she never complains.

Tomorrow she has physical and speech therapies after school.  I'm anxious to see what she does.  Last week in PT she worked with the Wii Fit.  That was fun.  I wish I could work in more therapy for her.  Because she actually has fun while working.  And they are so beneficial!

Last year her PT did an evaluation to see where she is physically.  It's very similar to being measured for the growth chart - like your child is in the 50th percentile for weight and 75th for height.  Physically, Harlie is in the 2nd percentile.  And it is extremely obvious at school.  And keep in mind that evaluation was done last year - before her spinal fusion surgery!  So, I'm glad she was cleared by her surgeon to go back to PT.  She has a lot of catching up to do.

We had parent/teacher conferences on Tuesday.  Overall, I think they went pretty well.

Cooper is very active and has a hard time sitting and paying attention during circle time.  I wonder where he gets that from?  Tom.  But, she said that he plays really well with his friends and shares easily and is very kind.  Me.  Socially, he is doing great.  I guess he'll eventually learn to sit still.  Right?  Now if we could only get him potty trained.  He has NO interest in it whatsoever.  And if we manage to get him to sit on the potty, he will only sit for a split second and is done.  So, sitting still is a problem across the board.

Murphy is doing great in school.  And I can't tell you how glad I am for that!  What a difference from last year's experience!!!  His teacher says he's doing great in all areas (except for when he forgets to take his meds, which is really quite obvious).  At least we know that the meds are still the right decision for him.

Harlie's conference was longer, of course.  And on paper, it doesn't look good.  But, that's the way she rolls anyway, I suppose.  She has always looked worse on paper.  And those that have seen her medical records before meeting her in person always comment on how shocked they are that she's doing so great.  And actually, if it happens the other way around, people are equally shocked to hear all she's been through.  So, for right now, I'm not letting it bother me.

So much of her challenge right now is language.  I'll give you some examples.  The other day Cooper said, "Mommy, that is really big!"  And I thought to myself, does Harlie know what "really" means?  And how do you teach that word?  Because no one taught it to Cooper.  See how much learning she missed by not hearing well for the first three years of her life?

But, then the other night, I was brushing Harlie's hair and teeth and getting her ready for bed when she said and signed "purple."  I said, yes, I see purple.  And then she said and pointed to her shirt, "Right here" and I could totally understand her!  And it occurred to me that we haven't taught her the words "right here" - on purpose.  How awesome is that???

So, when they are trying to teach her class that monkey starts with M - does Harlie understand "starts with?"  I asked her teachers that question, and they said they don't know.  That's what makes learning language in her situation so incredibly difficult.

I haven't been able to blog about the details - but I have been really stressed about Harlie's education this year.  It's been weighing on me more than I expected.  But, I have to say that I am now more hopeful than I have been since school started.  Hearing her "talking" has been incredibly wonderful.  On so many levels!

Okay, this has been way longer than I intended.  Ugh!  And I still have so much more to tell you!

More later!

Monday, November 7, 2011

Richmond Marathon

The Richmond Suntrust Marathon is Saturday.  And I will not be running this year, as originally planned (insert frowny-face here).  My stupid IT band has struck again (the same injury that I had during the marathon last year).  Since I already ran 26.2 miles with an injured ITB, which affected my time and my ability to exercise after the marathon for several months, it seems silly to do it all over again.

Last year was different.  For one, it was my first marathon and come hell or high water, I was running that thing!  For another, I thought my ITB injury was "cured" when I started the marathon.  Which, turned out to not be the case.  And quite frankly, that was pretty naive of me to even think that.  Ahhh, inexperience!

However, I can no longer use any of those excuses!  For one, I have experience.  For another, I know that my ITB will hurt - there is no way I can log 26.2 miles on this injury and come away unscathed.  Period.  And I'm unwilling to forfeit the next several months of running for this marathon.

I've been thinking this over for several weeks.  And I've gone back and forth.  I want to run it.  But I just don't think that would be very smart.   I am very sad that I will miss the experience this year.  I was so close to the starting line!  The feeling of completing a marathon was like no other.  It was an accomplishment I never thought I would achieve.  Heck, I'm approaching 40 years old, I have three small-ish children, one of which has special needs.  Finishing that marathon, I felt like a super hero!!!  Who the heck wouldn't want to feel that again?

But, I know the smart thing to do is to run the Half Marathon instead.  I'm not happy about it.  And I must admit, sometimes I think to myself, "God, considering what you chose for me - why couldn't you just make me a natural runner?  Would that have been so hard?"

I think Tom's pretty happy about my decision.  Training for a marathon is a family commitment - it affects us all.  The worst isn't even the time it takes to run.  It's the time it takes to recover.  That's where I feel the biggest challenge.  When I come home from running, I have to hurry up and get busy with my other duties.  Normal running/exercising is usually energy-producing.  Marathon training (in my experience) is energy-depleting.

And this fall especially, I need every ounce of energy I can get.  Harlie starting kindergarten has really taken a lot out of me.  Between the stress of how she's doing, and is she receiving the service she needs and is supposed to be getting, and finding a nurse... I have very little time, energy (and even less motivation) to go out and run a long run.

Yes, it was a wonderfully, awesome experience to run 26.2 miles.  And I hope to feel it again one day.  But, for now my goals have to shift a bit.  I want to work on some other things - not just distance running.   Goals that are less time consuming will be good for me - much more realistic and less stressful.  Maybe something that doesn't require my body to get a lot of rest.  Because I have to stay up late to get some quiet time - and to blog.

Okay, I just went and found my Marathon Recap from last year so I could link it in the first paragraph of this post and now I'm even sadder that I'm not running it!  It's so comical to me that even though I just read all about how incredibly painful it was - I still want to do it!  Runners aren't right.

But I am not going to let my emotions get the best of me!  When I signed up for the marathon this year - I had two goals.  One - to beat my time from last year.  And two - to run it healthy and without injury.  As awesome as it was to run it last year, I really don't want a repeat of that exact performance.  And then there's that voice inside that keeps saying, "What if..."

But I'm not.  Period.  I'm going to run the Half.  And as of right now, I say no marathon training next year.  So, we'll see...

I did go back and read all the awesome comments I got on my Marathon Recap post.  Loved every one.  Thank you very much for posting them.  And the next crummy day I have, I'll come back and read them again to remind myself that I'm not so bad.  Thank you for that!!!

Hopefully I'll have a good Half Recap for you.  Now, to get excited about 13.1 miles!  WooHoo!!!


Tuesday, November 1, 2011

Halloween 2011

I've come to the conclusion that I am no longer a fan of Halloween.  Being the candy lover that I am - this used to be one of my all-time favorite holidays.  But no more.  Now it is just hard work.  And quite frankly, it highlights an area of weakness for me - facilitating fun for my kids.  Ever since I had to put on my medical hat - I lost some fun in my personality.  Having fun takes energy.  And I just don't have a lot of energy lately.

So, a few weeks ago, trying to be ahead of the curve a bit, we took the kids out to find some costumes.  I wish we could make them - like what we did when I was a kid - but talk about work!  So, that's out of the question.  Of course Cooper didn't seem to understand what he was trying to pick out and with every suggestion his answer was "no."  We decided we would recycle one of Murphy's costumes.  For Harlie, I narrowed her selection down to Jessie (from Toy Story), a bumble bee and a cat.  I wanted her to be a witch this year, but her school had some character parade on Monday, and they couldn't dress up as a witch (ugh).  I wasn't going to buy two costumes.  So, so much for the witch idea.  Anyway, she choose Jessie.  Murphy was easy.  He's known for a while he wanted to be "Snake Eyes" (from GI Joe maybe?).  Bought the costumes, and marked that off my "to do" list.  Doing great and feeling like a good mom!

Then on Saturday, Harlie brought me her costume and wanted to put it on.  And that's when I discovered that it was WAY too small!!!  So, of course I take it back and there's no more Jessie costumes.  I ended up buying the bumble bee and the cat costumes and brought them home for her to choose from.  She choose the bumble bee.  Great.  Crisis averted.

So on Monday, I took Harlie to school and stayed with her all day because.... we found a new nurse!  Can you believe it?  Terri's first day was Monday, so I worked with her all day to orient her (they won't pay for two nurses at the same time so one can orient the other - which I think is terrible).  Anyway, spent all day at school.  Then as soon as school was out we went straight to Harlie's 5-year well check appointment.  Then I had to run an errand for Halloween (Harlie needed black pants and I had to return the cat costume).  Luckily Jennifer's daughter just outgrew a pair of black pants, so I stopped at her house to pick them up.  So I ended up still being in the craziness of last minute shopping that I was trying to avoid!  Never fails... Then I got home at 4:30 and realized I had NOTHING planned for dinner.

Murphy dressed himself (he's such a big help) and now I had to get everyone fed, dressed, pictures taken, etc. and hit the streets - all with a smile and in the name of FUN!


So, Tom got home and said there was a frozen pizza in the freezer.  Great!  I went and got that, preheated the oven, took the pizza out of the wrapper and put it directly on the oven grates, as directed.  I even set the timer!  Ahhh, I'm a good mom after all, I thought.

Pizza was done, I pulled it out and cut it.  But, it didn't cut very well.  I couldn't figure out why the knife wasn't going through.  So as I cut I spread the pizza apart with the knife and that's when I saw the cardboard!!!  Damnit!  I didn't realize it had a cardboard bottom!  So, the crust didn't cook very well at all.  It was all mushy.  And dinner was ruined!

And that's when I feel completely inadequate as a mom!!!  My mind is so focused on Harlie's education (or lack thereof), nursing, scheduling upcoming surgeries, trying to find a surgeon for a 3rd opnion, etc. that I just don't have it in me to do the simple things.  Like cook or have fun.

Tom and I ate the pizza anyway because 1 - we were hungry, and 2 - we didn't have any other choice.  The boys got butter noodles and Harlie got a can of formula.  It's a total Norman Rockwell kinda scene over here.

I did manage to buy a blond and pink wig for myself to wear, so I kept on focusing on that so I would look like a mom who knows how to have fun.

Amazingly, Harlie actually wanted to put on her costume, so I got her and Cooper dressed, put all the kids together and got a few photos.  I would show you, however, we can't find our freaking camera.  Nice.  Luckily my niece, Maggie, came over.  So, she took some photos with her phone.  I'll have to get her to e-mail them to me.

I made a drink for myself, loaded the stroller up and we headed on out.  I was so glad Maggie was with us!  She made it way more fun and walked with Harlie up the driveways and to the doors.

And you should have seen Harlie.  She wanted to be just like all the other kids - holding out her bag, letting them put candy in (or picking it out herself) and saying and/or signing "thank you."  And for some reason, it broke my heart.  I've just been feeling pretty sad lately, and to see her working so hard for something she was never going to eat... well, something about that just made me even more sad.  She's just so darn sweet sometimes, it kills me.

All those stairs, and hilly driveways... all while wearing her PMV.  That is HARD work for her!!!

After a few houses she got tired, so I put her in the stroller and went as far as I could go (up a driveway for example) before letting her out and she said, "Halloween" just as clear as a bell.  Maggie and I both turned our heads to her and said, "Did you just say Halloween?"  So, I know I'm not crazy.  Maggie heard her, too.

She wants to talk so bad - yet she hasn't received speech therapy at school in over a month!!!  But don't get me started...

The night ended up being good.  I can't walk with Murphy anymore because he is way too fast for Harlie.  So, he went with our neighbors.  Cooper walked the whole time.  He walked with me and Harlie on our street.  And then when we passed our house, he wanted to stay with Tom and give out candy.  After I got back with Harlie a little later, Tom took the boys out again for another trip.

And somehow we misplaced the camera.  I've been having photo issues lately.  I'm either missing the pictures or the camera.  We can't win.

So, here's a picture I took a few weeks ago...

And here are some more...

Kids.  They sure are funny.

Happy Halloween!  Whatever.

Hardware Removal Day

I'll talk about pre-op day first, then I'll blog about today... Yesterday we did the whole drive through testing thing.  That wa...