The eve of the first day of school.

Tomorrow is the first day of school.  Sleep isn't coming easy tonight.  And neither are the words for this post!  I have typed 17 sentences, and backspaced over each one!  I HATE complaining and I'm afraid this post may come across that way.

But, here's what I want to say... tomorrow is the first day of school.  If you are kissing a child good-bye, taking some cutesy picture of them holding a frame, and sending them off to school, with a lunch that they will eat - by mouth - you should take a moment to consider how lucky you are.  If you are amazed at how big your child has gotten, and how much they've grown, you are lucky.  If, when you completed the health form in their back to school paperwork, you got to answer mostly "no", you are lucky.  I mean it, you are truly blessed.

And we are lucky, too.  We have two eager to learn boys, who I will get to walk to school tomorrow.  Murphy is starting 5th grade and Cooper is starting Kindergarten (do you hear the angels singing?).  And I am not sad.  Not one little bit.  They are growing, thriving, easy loving and learning kids.  What's to be sad about?  I knew when I had them they were going to grow up.  The alternatives to growing up aren't good, after all.

And while I know we are lucky to have Harlie (in every sense of the word), it sucks more than I can say to not be able to send her to school tomorrow.

Yes, one could argue, "it's better for her."  And that's probably true.  And, exercising regularly, eating more vegetables and drinking less alcohol is better for you, too.  But does that make it any easier to do?  No.

The bottom line is that she cannot attend school for health reasons.  And you know what?  That sucks.  Plain and simple.

I might have forgotten to mention that back in June when Harlie had her pacemaker adjusted, I asked her cardiologist about her attending school.  I knew in my heart what he was going to say.  But, I asked anyway.  He asked me how she's doing at home, learning-wise.  And she's doing well.  One could make a very strong argument that she has done better at home academically, than she did in school.  So, it's simply not worth the risk.

Medically, nothing has changed from last year.  While she can handle small breaks from the oxygen, her lungs are no better.  And one bad sickness could mean serious consequences for them, for her and for us.  With limited alveoli producing oxygen in there, you can't risk losing any more.

I have to remind myself that this decision isn't mine to make.  I cannot possibly tell you how difficult that is.  Every single day I want to figure out a way to make it happen.  I want her to have SO MUCH MORE.  Keeping her home feels like I've given up.

Some days it is so hard to be her mom.

I just looked back at the last few years of "first day of school" posts.  It made me sad.  So much hope I had.  So much effort we made to get her tiny little butt to school.  And for what?

And, is this forever?  Will she never go to school? What about school pictures?  The yearbook?  It seems wasteful to buy her a yearbook with a bunch of kids that she never even met.  And do I take her to school on the day of school pictures?  The thought of going into that school with Harlie, and it not being for school brings tears to my eyes just thinking about it.  And what about those little frames where you put each year's school picture in it so you can see how they've grown?  It would be mostly empty for her.  Which means I shouldn't get one for her.  Which means I shouldn't get one for the boys, either.  Which makes going for school pictures seem kinda stupid.

Ugh.

I don't even know what grade she's in.  Technically, she's starting 2nd grade.  But, that's kinda bull, because she didn't get any science or social studies last year.  And she still doesn't know how to read.

We went to the pool today and I saw girls that were in kindergarten with her the first time she started (she repeated KG).  They are now starting 3rd grade.  And they are so big and grown up.  And it's like Harlie is frozen in time.  She's still so tiny.  She still struggles to talk (although she is talking SO much more and we are now able to understand SO much more - which is fantastic and never for a moment do I take that for granted, I promise you!).

Anyway, it just feels so weird.  But, like I said, we are lucky to have her.  That is true, and I hold on to that every day.  She is so funny.  And smart.  Even though academically, you might not be able to see it, or measure it.  Just tonight when Murphy and I walked Rooney, he was telling me a story about Harlie saying something.  And he was laughing.  He enjoys being able to understand her just as much as I do.  And he thinks she's funny, too.  Just because it will put me in a better mood, here are a few things that she says that is really funny the way she says them...

1. She gives her baby doll to Murphy and/or Cooper and says, "you take care of the baby."  The other day I was feeding her and she signed "full" and "sick."  I said, "You're not sick!  Mommy's sick."  I was just joking around.  Time passed and I went upstairs and heard Harlie in Cooper's room telling him he had to take care of the baby.  He said, "I don't want to - ask Mommy to do it." Then Harlie said, "She can't.  She's sick."

2. If she asks for something (like to get on the computer) and we say, "in a minute" and more than a minute goes by, she says, "now?"

3. She keeps on telling us that she wants a "pink creature power suit" (from the show Wild Kratts).  The first time she said it I had NO idea what she was saying.  So, I called Cooper in and asked him to translate.  He looked at her and said, "What Harlie?"  She "said" it for the 400th time (1st for him) and Cooper looked at me and said, "She says she wants a creature power suit." and he turned around and ran out of the room.

4. I crack up every time she calls "Boys!" to Murphy and Cooper (like we do).

5. It's both wonderful and sad when she says, "I don't want oxygen."  I love hearing her talk, but hate that she has to have it when she doesn't want it.  The other day Brandy said her sats were 81 (I was in my office and Harlie was in the living room) so she went to go get the oxygen.  When Harlie saw the tubing, I overheard Harlie say, "I don't want oxygen." And then Brandy said, "But you need it." And then Harlie said, "But, I'm 81."  She looks at the pulse ox and looks at those numbers.  She never ceases to amaze me.

6. The other day she had her baby in her hands and she looked up at me and said, "I love her."

Nope.  Not going to take anything for granted when it comes to her.

Like when she made me get down the double jogger so she could take her baby.  How could I say no?

Or the time she tried to hula hoop with the big girls at a pool party.

I love the way she plays with Rooney.  Although, he might not always agree.

Minutes later I saw them having a heart to heart moment. While she was wearing swimming goggles.

And how could I not feel lucky when I get to see this...

Every time she rides her bike, I can't stop smiling.  She works so hard.  And she really is very happy.  I think this was her first summer doctor/hospital/surgery-free.  And she will be EIGHT years old this month.  Isn't that crazy???

Anyway, I will fight the sadness.  And I will continue to choose to find a happier perspective.  For as long as I possibly can.

Thank you for your love and support!
~Christy xo

Lots of updates

The past few days have been especially difficult.  Way too much to do, way too little time.  I'm spread too thin.  Things, important things, aren't getting done.

But, before I get into that, here is something I haven't blogged about yet.

Murphy turned NINE years old on May 11th.  Gasp.  Nine!  How did that happen?  He was such a cute little bugger.  Here he is at two...

Crazy how fast time goes by.  Life was so different with this kid.  Those were a glorious 2.5 years. How carefree and naive we were!  And we were never sad.  My, how things have changed.

Well, being the awesome mom that I am, last year his birthday party was in August or something.  Pathetic.  So, this year, I thought I would outdo myself and have his party in May.  Late May, but still.  I know!  I'm good, aren't I?

We took him and a few friends to play putt-putt golf.  Then we went to Sweet Frogs for frozen yogurt and then home for a movie and a sleep-over.  I was super impressed when I woke up at 1:30am and heard silence.  I went downstairs to check on them and the tv was off and they were all in their sleeping bags, sleeping.  Way to go, boys!  I have a picture of them at putt-putt (the one and only picture we took, oops) that I want to send to all the parents with a note.  I hope I get to that item on my to-do list soon.  If you're one of the parents, don't hold your breath.  My intentions are good!  I promise!  Follow through, not so much.

And here's why...

Our last two days in a nutshell:

Wednesday, May 29th
7am - Run 3 miles
8am - go to Lowe's, buy dirt to plant flowers (preferrably before they die)
11am - Rooney, vet appointment
2pm - Dr. Dodson, ENT appointment, Harlie
5pm - Swim practice, Murphy

Thursday, May 30th
Terri off (no nurse means no school if I can't take Harlie myself)
10am - Dentist, Murphy and Cooper
1:15pm - Feeding Clinic appointment, Harlie
3pm - Hearing Impaired therapy, Harlie
5pm - Swim practice, Murphy

It might look like appointments are spaced out enough.  But they aren't.  There's no time to pee or eat.  Or walk the dog.  Or sit down (other than in a car, which doesn't feel like sitting down).  Or to do laundry, send emails, blog, go to the gym.  Or to pick up kids and drop them off.  Or to drive there! Blah!

Harlie has been coughing up some small blood clots in the morning (with her initial coughs after waking).  Then no more blood for the rest of the day.  This has been happening every morning for over a week now.  The first few days, I was like, "whatever."  But, it's been more than a week now.  And they are blood clots, not just blood.  Then she started to cough up a little of blood in the middle of the day.  Weird.  Especially considering she is not sick (thank God) and not coughing excessively.  Her sats are great and her nights have been restful with no coughing.  Combine this with the fact that she's not been tolerating her cap or PMV, and I was getting concerned that she might have a granuloma in her trachea.  So, I emailed her local ENT and she said to come in to see her the next day at 2!  Wowzer!  I've never gotten an appointment that fast.

Rooney had a vet appointment at 11am.  Then I had to go get Harlie and Terri and bring Terri back home to get her car.  Then I had to go pick up Murphy from school.  Of course I forgot that he rode his bike to school.  But, by then I didn't have enough time to let Murphy ride it home to drop it off.  So, I had to put it in the back of the car.

Then we rushed to MCV for Harlie's appointment.  Parking was a nightmare.  More than usual this time.  We parked, took the parking garage elevator to the street.  Then walked the half a block to a different building.  Then took a second elevator to the second floor.  Then got off that elevator and switched to a third elevator and took that one to the seventh floor.  Normally, I don't notice the ridiculousness of the process.  But, because I had all three kids and they kept looking at me with faces full of confusion, I noticed.  Plus, I'm tired.  And it's easier to get annoyed when you're tired. And of course my thoughts went to how awesome it would be if we had a real Children's Hospital.  Or even better, all healthy children.  Oh, to dream...

We all crammed into a very tiny exam room and saw her doc, Dr. Dodson, who I love.  First she looked into her ear and cleaned the wax out.  I know that sounds gross, but she can't help it.  Wearing an aid all day prevents any wax from working it's way out.  Harlie sat super still and Dr. Dodson was able to clean it all out.  I was so proud of her!  Then she scoped Harlie right there and Harlie did GREAT!  First she put the scope in her trach and did not see any granulomas or irritation in her trachea.  Then we removed her trach, and she put the scope in her stoma (just in case the source of the blood was around the cannula.  Nope.  Her trachea is "beautiful."  Which is fabulous, of course.  Except that leaves us with no answers.  :-(

If the blood isn't coming from her trachea, I guess that leaves her lungs?  Which means I have to contact pulmonary, which I don't want to do.  Quite frankly, I don't think I'm going to get any answers there, either.  She doesn't seem to be bothered.  So, I'm just going to wait it out a little longer. See?  I'm tired.  And probably seasoned.  I know doctors don't know everything.  I think I liked the innocence of thinking they did, better.

We got home that afternoon and then I had to take Murphy to swim practice.  Now that he's nine, he moved up into the next bracket.  So now he has to swim 50 meters.  Oi.  I don't have high hopes for this season.  And if he doesn't kick up some motivation and desire to put some actual effort in, it will be our last with him.  I just can't do it.  I don't mind working really hard if he loves it and wants to do it.  But, if he doesn't, I just don't have it in me.  I'd rather put that effort into other things.

So that day was all go (the morning was spent on planting flowers) and I got no time on the computer.  You know, to do the stuff that really needs to be done.  I don't know why I bought those darn flowers.  Now I just created more work for me that needs to be done in a timely manner.  

Then Thursday was crazy, too.  The boys had a dentist appointment at 10am.  And I have no nurse until Monday.  Both of our nurses are out of town.  So, I had to keep Harlie out of school.  Which totally sucks.  But, I have rescheduled that dentist appointment for months because of stuff like this - and I just couldn't put it off any longer.  So, off the three of us went.

We had to wait for an hour.  An HOUR!!!  Something must be going on with this office, because I have never had to wait that long.  Anyway, Cooper was already super whiny and thirsty and hungry by the time we got in there.  Awesome.

But, surprisingly, he was good - while in the chair.  Out of the chair was another matter entirely.  So, Cooper and Murphy got their teeth cleaned.  Cooper has a very small cavity.  Crap.  So, they want to fill it while it's still small.  Murphy's good.  And I didn't make Harlie an appointment because I was thinking that she's seeing the dentist in Boston.  Which is stupid of me because they aren't cleaning her teeth!!!  Ugh.  Having two dentists in two different states is not fun.  So, after the boys were done Harlie signed "my turn" and she broke my heart.  I wished they would just work her in real quick, but apparently it was close to lunch.  I don't know what the reason was.  There weren't any patients when we left (near noon) and there were several dentists and hygienists.  Hmmm.  Anyway, that sucked.  And it's totally my fault.  I just wish they could have bailed me out.

So, we got on the road at noon and then I realize that Murphy missed lunch at school.  Now I have to go by and get something for him to eat before taking him back to school.  Fine, whatever.  It's just that I had no time since I had to have Harlie BACK to the same place in an hour.  Ugh.

For the record, I don't plan on scheduling things like this.  It just happens.  Especially when Harlie's sick, so I have to reschedule something (which was the case for both of these appointments).  And with the Feeding Clinic appointment, she must be seen every so many days to stay in the program. And we had already pushed that envelope to the max (it had been like 263 days since our last appointment and we are supposed to be seen every four to six months).  But with this past horrible winter for Harlie, I had to reschedule, and it takes three months to get another appointment.

So, there you go.  It's just the way it is.  Which is why these past few days have been so difficult.  It's been all go and for nothing I want to do.  Sometimes, that just gets old.  OLD, I tell you!

Anyway, so I dropped Murphy off at school.  Ran home and fed and walked the dog (man, I love that dog!) grabbed a granola bar for me, fed Harlie and left Cooper with my Mom, got back in the car and headed back to the Children's Hospital.

To clarify, the "Children's Hospital" is not a hospital.  It is a long term care facility for kids who have medical needs that prevent them from living at home (or who don't have a home) and an out patient center for therapies (PT, ST, OT and feeding) and there is a dentist office.

So, we drive right back there and I park the car.  Harlie says, "Mama!" and I turned around and she smiles a big smile and points to her teeth.  She thought it was finally her turn to get her teeth cleaned.  Ugh.  Break. My. Heart.  Seriously?  What freaking kid wants to go to the dentist?  Especially with her oral issues!!  I hate myself for not including her in the appointments.  But, how was I to know she would want to have her teeth cleaned so bad??  Heck, come to think of it, in my defense, Harlie wasn't even supposed to be with me!

She now has an appointment for June 26.  Let's hope she's in the mood that day.  Oh, and to get Cooper's treatment for his small cavity (which the dentist said she wanted to do asap) yeah, August 3rd.  Whatever.

Moving on...  We go in for her Feeding Clinic appointment (15 minutes late, which, in my opinion, isn't bad all things considered).  And we waited some more.  We see the Feeding Clinic to see a nutritionist and make any changes to her feeding plan, discuss some GI issues, etc.  Finally, we go back and get her weighed in and measured.

She now weighs 42 pounds.  Woohoo!  Except that's not enough, really.  Darn it.  While she gained some weight, she dropped on the growth chart.  She is the size of an average five year old.  Which I figured since her and Cooper are the same size.  She finally just outgrew size 4t clothes.

Right now, Harlie gets tube fed four cans of Pediasure 1.5 (350 calories per can) per day.  We now have to add in an additional four ounces per day.  I know that doesn't sound like much.  But, I don't know how were going to do that.  It's difficult to get the four cans in some days.  And it's going to be really important for her to get those calories after she has surgery.  Her body is going to need all those calories to heal.

So, we left that appointment and hurried home to try to make it by 3pm so Harlie could get in her hearing impaired instruction with Cheryl Sale.  She comes to the house once a week to work with Harlie.  We got home at 3:10.  Whew!  Cheryl waited for us and Harlie seemed to have a good session with her.

After that it was time to take Murphy to swim practice.  Oh, brother!  I was really tired by then.  I still had not put away the clean dishes, or worked on the laundry that was half done.  Or sent the emails I need to send, or worked on the Medicaid letters I need to get done, or written any thank you notes, etc.  Wait, that's not totally true.  I did work on the Medicaid letter while Harlie was working with Cheryl.

So, I asked Harlie if she wanted to go to the pool.  You should have seen her face light up.  I asked her if she wanted to play on the iPad at the pool or get in the water.  She signed "swim" and her face was so freaking cute.  I wish I could have gotten it on video.  Then she gave me a kiss and a hug.  Which was so cute considering I asked for a hug and kiss while we were waiting at the feeding clinic and she said no.  I guess she decided she liked me again.

Well, who could refuse her cute little face - especially considering the whole dentist thing earlier.  And the fact that she spent practically the whole day at the Children's Hospital.  The only fun thing we did that day was take the dog for a walk in the morning.  We stopped by and picked up James (Cooper's friend) and I took them all for a long walk with Rooney.  The boys rode their scooters and I pushed Harlie in her chair.  We walked by the school and I couldn't believe our luck when I realized that the third graders were having an early recess in the bus loop!  So, we waved to Murphy.  I could tell immediately that he was embarrassed.  Whatever.  So, I waved even more enthusiastically and told the kids to do the same.  ;-)  Good times.

Anyway, so we all put swim suits on and headed to the pool.  Tom came up and met us up there after work.  We let the kids play for a while and left at 6:45 to go home.  The house was a wreck, everyone needed to eat, the dog needed to go for a walk, and it was bath night.  It was a busy, busy day.

This post is so long already, but I'm at school with Harlie today, so I am sitting in front the of the computer.  I guess I'll write for as long as I can.

So, back to my to-do list.  It's crazy long.  And some things are time sensitive.  Like these letters of medical necessity for VA Medicaid (since she's having surgery in Boston).  Or this meeting with the Prentke Romich rep to see about getting Harlie a new communication device.  They have stopped manufacturing Harlie's model because they are using the new tablet style technology.  And one of the new ones is super light and her ability to carry the device around herself could be life changing. But, we need to have that meeting before her surgery since she will probably be in pain which could affect her testing on the devices.  Blah, blah, blah.

So, I've tried all different "systems" of managing my to-do list.  But I have finally come to the conclusion that it's not a system problem.  It's a time problem.  There just isn't enough of it.  Period.  So, I think I need to be more efficient.  And one way to be more efficient is for me to have all of the stuff I manage (Harlie's medical and educational material is immense) in one place.  Crazy concept, right?  As of right now, I have notebooks in the kitchen, crammed in two separate cabinets, in the hall closet, and in the laundry room.  Seriously?  File one piece of paper?  Yeah, I don't think so.  So stuff just gets stacked and then I have to go through that stack to find what I need.  Because I know it's in there.

In summary, I need an office. Bad.  Really, really bad.

I came to this conclusion several months back.  Actually, longer ago than that.  But, my hands were tied because we still needed the playroom downstairs.  I am not ready to send Harlie to the third floor to play.  No way.  I will spend all my time trudging up and down the stairs tending to her.  But now, I am fine with her playing in her room.  She has a monitor in there and I can hear when she needs me.  So, I have spent a lot of time going through the playroom and purging toys, separating them into giveaways, consignment and keepers.  Then the keepers got put in the appropriate child's room.  The playroom is essentially empty.  I just need Tom to saw apart the last cubbies so I can re-use them and put them upstairs.  Then we need to replace the flooring, and buy some office stuff.  Like a desk, and cabinets and whatever.

So, on Wednesday night, (which was the day I went to the Vet, ENT and swim practice) we were supposed to drive to Northern VA to go to the Ikea store to check out the office furniture.  I want to do this as inexpensively as possible and I want the office to be pretty modern with not a lot of stuff to clutter it up.

Granted, I didn't have a lot of energy for the trip - but it was the ONLY night we could do it for several weeks and I need this room so, so bad!

Well, we ended up not being able to go.  And I was disappointed and frustrated.  And I was tired.  And annoyed that so many things I do are things I have to do and don't want to do.  And it doesn't help that the next couple of weeks have some really challenging days in them.

For over SIX AND A HALF YEARS now I have had to do countless things that have been unpleasant or downright painful.  And I have tried to be happy and smile through it all.  I guess I was just really, really tired that night.  So, Tom came home and I really had nothing to say.  So, you know it's bad when I'm quiet.  He kept on asking me stuff trying to get me to talk, but I just didn't feel like it.  Crazy, I know!

I just feel so... raw.  Like even the littlest of things - that I normally blaze right through - hurt.

So, you know it's bad when you're husband TRIES to get you to talk and then announces he's going to the store to buy wine, and comes promptly home and immediately opens the bottle, and then brings you a full glass.

It's been rough.  And I feel bad for him.  I wasn't mad at him, exactly.  Although, I need his help for this office project (I've done all I can do at this point) and you know the proverb, A cobbler's child goes barefoot?  Grrrrr.  So he got the brunt of my crappiness.

Life is hard.  And somehow we have to keep our chins up and smiles on our faces.  I think an office will help me do that.  If not that, Tom's going to have to buy a lot more wine.  ;-)

I'm about to wrap this long post up, I promise!  But first, a few pics...

Today, Harlie had speech therapy with Amy.  And she drew this...

I don't know about you, but that is the cutest darn snail I've ever seen!

And the other day Harlie was watching Wild Kratts on the computer.  She kept on asking us to look at the fish.  After a few, "Yes, Harlie, I see the fish" I realized she must be trying to tell us something.  So, I asked her to tell us with her talker.  And this is what she "said."

Ah ha!  So, she wants to go to an aquarium!  Awesome!  And with surgery in Boston in less than five weeks away, she'll get to when we get there.  Or maybe we'll have to take a trip to the Baltimore Aquarium before then.  Our kids have never been there.  I suppose we should try to cram as much fun as possible into June so maybe I can live with the guilt of what this summer holds while her jaw is being distracted.

Another huge sign of progress in her language development happened the other day.  We were standing in the kitchen and all of a sudden Harlie verbalized, "I gotta go potty."  I totally understood her.  And she wasn't saying that because she was prompted or asked or forced.  She just had a thought that she verbalized.  That's a first, for sure!

Okay, that's it!  We are home now and many other tasks are screaming my name (as well as my children!).

If you're still reading - thank you!!

Much love,
Christy xo

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!
~Christy