Tuesday, June 29, 2010

Quick one

Today after I picked Murphy up from Summer Blast, he went outside to play. On his way out the back door, I heard him say, "Mommy, I'm going outside. I've got my crocs on." I looked up and saw him walking out the door wearing his vampire cape. He went next door and got his friend to come out and he was dressed like a pirate. Boys. I love their imaginations.

After a while I noticed that he changed his shirt.  I asked him why and he said he needed to wear a red shirt to be the Red Baron.  Of course!

So, over the weekend, Murphy had a friend over. After a while of them playing, Murphy came down the stairs and asked Tom, "Daddy, does Harlie have only one ear?" Then he went over to Harlie and examined her ears. Then he went back upstairs. We could only assume that his friend asked him why Harlie had only one ear.

I think it is great that he sees Harlie as a whole person - and doesn't notice her "unique features." But, I just can't help but be shocked that he didn't KNOW that she was missing an ear. I mean, I had NO idea that he didn't know! We certainly don't try to hide it.


Oh! And I forgot to tell you that a couple of days ago, Harlie's HME fell off, onto the floor. (An HME is a heat and moisture exchanger that acts like a nose, warming the air she breathes and providing humidity.) Cooper saw it, went and picked it up and put it back on Harlie! And she let him! It was so cute! And he probably doesn't think anything of it, just like Murphy. He sees Harlie as Harlie and loves her just the way she is. And she is one lovable little girl!


Friday, June 25, 2010


On Tuesday, we were in the play area at the mall after Harlie's appointment in Norfolk.  A little girl near us asked her mom "Why does she look like that?"  I pretended to not hear the conversation.  But, I heard the mom say, "That's they way God made her." And then she said, "God made her very special." And that's when I had to choke the tears back.  Yes.  God made her very special, indeed.  It didn't help that the little girl looked so darn concerned.  Something about that got to me.

On Monday, at The Little Gym a little boy just pointed at her and said "her face."  And then he said something like "her face different."  I think his mom said something like "we all look different."

Today was the kicker.  We went to a birthday party at a movie theater (saw Toy Story 3 - more about that later).  Afterwards we went next door for the celebration.  I had to take Harlie to the restroom after the movie, so we got next door last.  I sat her in the next empty seat, next to a little boy.  He looked at her and exclaimed, "Ewww! I don't want to sit next to her!"  I think I would have lost it if it weren't for the birthday boy's mom.  Just knowing that she knew what I was feeling made me feel better.  And she said something to him and moved him away from her.

The only thing that gets me through this kind of stuff is the fact that she doesn't seem to notice.  Yet.

And sitting here writing about it I can't help but wonder why in the world I react the way I do.  I freeze.  I completely freeze.  I get so incredibly uncomfortable.  And I know believe that the parents have to be so uncomfortable, too.  It is such an awkward, hurtful situation and I just want it to stop and get away.

I get that the parents are unprepared.  Heck, I can't imagine that they see kids like Harlie often.  I went my whole life and never saw a child with a trach.  Or a child with Harlie's facial differences.  How can you prepare for seeing something you don't even know exists?  So, I get that.

What I don't get is why I am constantly caught off-guard.  And why don't I get all Mama Bear and say something?!

Like today.  Why didn't I tell that little boy (that's old enough to understand) that saying "Ewww!" about someone is very rude?  Or "you act that way toward my little girl again and I'll squash you like a bug?"

A few weeks ago, Harlie and I were in an elevator with a mom and her three kids.  The four of them just openly stared at Harlie like she was a freak show.  That elevator had to have been the slowest damn elevator in all the world.  Talk about uncomfortable!!!

I am going to have to figure out another way to handle this situation.  Saying nothing or doing nothing will not work when she figures out that people are reacting negatively to her.

And really, doing nothing isn't working for me now.  I hate the way I'm feeling right now. I want to rewind the clock and handle the situation totally different.

Even when kids are in our house - our safe haven - I'm caught off-guard by their questions and comments.  She's "weird", she's "mean."  Ugh.

So, I made a postcard with her picture on it, and some facts about why she looks the way she does and why she breathes through a trach, and how much she's been through in her life.  I thought I would get them printed and carry them with me.  So, when I overhear a child ask their parents about her I can hand them the card and tell them that it might help them answer their child's questions about her.  That will force me to address the situation, and give the parent and I a chance to talk, which will maybe make the situation not so uncomfortable.   And hopefully the parent can talk to their child more about it later.

I don't know.  I can't stop it from happening.  And I can't help that it hurts when it does.  And it is going to hurt so much worse when Harlie understands and looks at me with tears in her eyes.

How do you prepare yourself to hear hurtful things about the way your child looks?  And how do you prepare your child?  She is so joyful and so very, very loved.  And I don't want the things she hears about herself to change the way she lives her life.  Right now she smiles at herself in the mirror.  I don't want that to ever end.


Thursday, June 24, 2010

Trying to get caught up

So many things to talk about that they are all jumbled up in my head.  This is what happens when I get out of my groove of blogging.

Tuesday night Cooper got run over by one of those battery-powered kid cars, driven by Murphy with Harlie in the passenger seat.  Tom wanted me to tell you that he got run over by a car - and then explain that it was a kid one made of plastic - but I didn't think it was right to do that to you.  You're welcome.

Murphy had been doing great driving it (we were at a friend's house) and even Harlie learned how (which was super cute!).  But he ended up plowing Cooper face down, leaving his butt and feet sticking out the back end.  With Murphy exclaiming, "It was out of control, Daddy!" Tom had to lift the car - with Harlie still in it (it's a good thing he's been working out) to get Cooper out.  He was quite upset screaming bloody murder.  But he's perfectly fine now.  He just got a scrape on his back and a couple of bruises around his right eye.

On the way home (after their bedtimes) Murphy informed us that he was hungry and that we never fed him dinner.   Aw crap!  I totally forgot to feed us all dinner!  Well, except for Harlie.  She was tube fed that night.  Anyway, so Cooper was having a rough night.  Oh, this was all after our trip to Norfolk.  We had Chick-Fil-A on the way home at 2:30, and then we never ate again.  Oops.  Well, we were busy and having fun at the park, and then hanging out with Mike and Marcy.  The kids loved jumping on the trampoline and driving a car.  Who could think about food with all that fun?

Really, they are all fine now.  No worries.  I am a perfectly fine mother and I do feed my kids most of the time.

Speaking of feeding...

Harlie had feeding and speech therapies today.  I can't remember if I mentioned before that her new speech therapist was able to move us to Wednesdays after feeding therapy, so we don't have to drive down to the hospital two times a week.  It's pretty nice to be able to get them done in the same day.

Anyway, she continues to do great eating.  Even though she can drink from a straw, it is not very efficient.  She has learned that she can control how much she puts in her mouth, and her goal must be to suck up as little as possible.  So, we are going back to the nosey cup for volume and the straw on occasion for practicing the skill.

I have started to venture out with pureeing more foods.  She's had most fruits (even apricots) and vegetables.  And last week I pureed a jelly and cream cheese sandwich (which she ate) and today I pureed a turkey and cheese sandwich (which she also ate).  I have to say that I'm a little nervous.  Pureeing foods is not all it's cracked up to be.  Sometimes, it grosses me out.  Like, scrambled eggs.  I don't know why but I had to fight a gag reflex while pureeing.  And cream style corn.  Ugh.

Today Allison gave her strawberry applesauce - straight out of the container with no pureeing - and she did fine.  So, that's a good sign, I think, that she can handle some texture without gagging and vomiting.

Then we had speech therapy.  Her therapist is working on getting her to make vowel sounds.  She wore her PMV (speaking valve that allows air in through the trach, but not out, which makes the air come out the mouth and nose, allowing sound) for most of the hour.  Barbara focused on getting her to combine different sounds, like uh-oh and oh no.  While trying to get her to say "oh" she handed Harlie a plastic O (like the kind you stick on the fridge).  After Harlie said "oh", Barbara told her to say bye to it and Harlie said - clear as a bell, "bye-bye O."  It was SO wonderful to hear!!  She still can't make the A and E sounds.  But, we'll just keep trying and see what happens.

So, all is good.  More later!

Tuesday, June 22, 2010

Norfolk trip

Ahhh, our last trip to Norfolk (for a while) is behind us.  Her doc decided to take her off the antibiotic, which was great news.  I'm all for one less medication!  

For the most part, her appointment went well.  Since it was her last one with him, and she just had labs done for her heart cath, and she'll be in good hands in just three weeks, he didn't make us go to the lab for blood work.  YAY!  

The only issue we had was his concern for her high hemoglobin (red blood cells).  To be honest, he kinda worried me a bit.  But I have learned to not listen to a doctor's opinion/concern for something that isn't that doctor's specialty.  

He was going off her labs that were done last month.  Her monthly hemoglobin levels for the last three months have been 14, 16.1 and 17.5.  I think what made him so concerned was the consistent rise in numbers.  And they are higher than the norm.  So, he called a hematologist to get his opinion.  Of course, he said he wanted to see her pronto.  As in before her surgery.  I didn't argue with him, but there was NO way I was going back down there to see a new specialist.  Period.    

So, as soon as we got home I e-mailed her cardiologist and asked him about it.  He said - given her cardiac status - he would be surprised if her numbers weren't high.  It is a result of living with low oxygen levels, called hypoxia (a condition in which the body as a whole or a region of the body is deprived of adequate oxygen supply).  

I didn't ask him anything else (like if things will balance out after the Fontan).  So, I don't know anymore than to not worry about it for now.  Which, quite frankly, is good enough for me.  

Yay for not having to add another specialty!!!

Monday, June 21, 2010

I'm back!

And I didn't even go anywhere.  How sad.  I've just been too busy to blog.  And I haven't been in the blogging mood lately, to boot.  Weird.  

Well, tomorrow is our LAST appointment with the infectious disease docs at the children's hospital in Norfolk.  YAY!!!  She has now been on antibiotics for over FOUR months - and she still has three weeks to go!  That will mean she will have completed five month's treatment out of a recommended treatment time of four to six months.  

For this appointment, it will be a family affair.  Me, Brandy and the three kids.  Should be interesting.  Even though it doesn't fit in with my goal of trying to cram in as much fun as I can afford (time and money-wise) into the next three weeks.  

Yes, we only have three more weeks until Harlie's heart surgery.  She will be recovering for at least two weeks in the hospital (which will put us into August).  And sometime in August she will start the intensive feeding program, which is Monday through Friday, for six to eight weeks (which will put us into September or October).  So, for her, the next three weeks IS her summer.  And mine, really.  Oh, how sad.   

Well, in keeping with the "fun" theme, today I took Harlie to The Little Gym for a class.  They let us try it for free.  And while they normally require you to sign up for the whole semester, considering the circumstances, they are letting us pay per class for the next three weeks.  Isn't that super nice?  And an awesome friend of mine gave me a gift certificate to use, too.  How great is that?!?!  

Anyway, the class consisted of silly fun stuff for the kids, as well as a casual introduction to gymnastics.  Harlie loved swinging from the bars.  It was all she wanted to do for the whole class.  The teacher helped her flip over the bar and Harlie LOVED it!!!  It was so great to watch.  I got some pictures and a small little video of her swinging, but I can't upload my pics right now.  So, I'll have to post them later.  

There's more to that story, but I'll have to pick it up tomorrow.  

Wednesday, June 16, 2010

End of School

Tomorrow is Harlie's last day of school.  I guess with most transitions, it is bittersweet for me.  I know how much she loves it and I am sure she is going to miss it.  And it's not like we're leaving school to go have this fantastic summer full of vacations, days at the beach or pool, play dates, etc.  No.  Her summer is going to be different.  More on that in another post...

Murphy's last day of school is on Friday.  He gets a one week break and then Summer Blast starts.  Summer Blast is a "camp" for school-aged children.  They go to school for fun activities and play, Monday through Thursday, 8:30am to 2:30pm.  There are four sessions, and each session lasts two weeks.  AND IT COSTS NOTHING!  Did you hear me?  NOTHING!!!  Well, we pay for it with our taxes (the program is through the county) but still.

A few months ago I heard about this program through some friends.  I got the scoop the day before registration.  Keep in mind that I don't like planning.  And I don't like doing a lot of work for something that isn't going to happen for months.  But, it's FREE and I have to give Murphy something to keep him busy and occupied while Harlie and I are away.

There are a limited number of spots and since it is FREE they go quickly.  Within 20 minutes the program was full and I was very happy that I had successfully registered him for all 4 sessions.    I feel so lucky for this program and am SO glad that he gets to go.  I really hope that while Harlie and I are away it will give him the consistency and distraction that he needs.

On another note, I am able to run again.  After two full weeks of "resting" my legs (meaning I didn't run - not that I actually rested, because I didn't), I ventured out on Monday morning and ran three happy, pain-free miles.  Woo Hoo!   So, all is right again in that department.

This week two of my nieces graduated from high school.  It's such an exciting time in their lives.  Congratulations Jordan and Maggie!!!

Okay, that's it for now.

Friday, June 11, 2010

We're Home

We were discharged shortly before 10pm last night.  And we got home a little after midnight.  That stretch of road between here and DC is always heavily traveled - no matter the time.  There was a lot more traffic than we expected.

Harlie watched a movie (Monsters, Inc. is her current favorite) on the way home and then when it was over she passed out.  When I got home and opened all the doors and the car lights went on, she didn't move.  Tom took her out and she signed "night-night" three times going upstairs.  She was one tired little girl!

And now, so am I!  And I have a killer cold (Tom says it's a stress cold).  Anyway, I feel awful.  So, Harlie and I are just going to chill today.   My friend Sarah still took Cooper today to give me a little more of a break.  Sarah's son is the same age as Cooper (only a week or so apart) and they had a blast playing together yesterday.  Thank you so much Sarah!

I have more to tell you about - and I have some pictures.  But, I'll have to do that later.  Just wanted to let you know we are home and Harlie is happy.

Thanks for all your support!!!!

Thursday, June 10, 2010

Heart Cath Results

So, she is out, as Tom said, and is doing fine.  The worst part about a heart cath is that she isn't supposed to bend her leg at her hip for six hours.  A constant battle in that Harlie never lays still. 

The best part - about THIS cath - is that it went great!  So great, in fact, that her doctor is comfortable sending her home after the required six hour recovery period!  We were shocked.  Leave it to Harlie to keep us guessing.  Unfortunately, we won't be getting on the road until after 10pm.  Oh well.  It's worth it.

Okay, on to the nitty gritty...

Her last heart cath (last April) showed that her pressures were measuring at 19, which is high.  When pressures are 20-plus they consider the patient too high risk to have the Fontan (the next heart surgery she needs).  They did the DKS to help reduce some of that pressure, with the hope that her number would come down.  So, today, she measured at 18.  So, not a huge improvement in one year's time.  While a higher number raises risks for sickness and complications after the Fontan, it is clear that this is the best we're going to get.  So, it would be too risky to wait any longer.  I will talk more about those complications after our pre-op appointment with the surgeon (July 12th).  I'm going to do my best to not think too hard about them right now.

Bottom line - she's a go for the Fontan on July 13th as scheduled.  So, I'm happy. 

It might sound strange to hear that I'm happy this.  So, just a super brief explanation for my emotions:  while the surgery and recovery will be hard time in our lives, it is ultimately what is needed to give Harlie the best chance for a long life.  Without the Fontan, her life expectancy would reduce dramatically.  And we have come out of prior caths with her NOT being a candidate for the Fontan. 

So, there you have it. 


I'm taking the liberty of passing on some info (sorry oh King of the Blog my Sweet Sweet Bride).  I know 3 things.  She is done and she is fine.  She might even get to come home today (I'm betting its a long shot based on my in depth hospital experience...).

Thanks for the prayers and thoughts.

"The Other less talkative half of Life Since Harlie"

Heart Cath Underway

Just wanted to give you a quick update that they took Harlie back close to 12:30.  The doctor said that he is thinking it will take about three hours, give or take.  Access has been a growing issue.  Hopefully he will gain access without too much of a fuss. 

Harlie broke my heart this morning.  After we got loaded in the car, we went to pick up Jennifer at her house.  When we got there, Harlie pointed at her house and signed Kyleigh's name (Jennifer's daughter).  She just signs the letter "K" over her heart.  I just hate that she couldn't go and play - instead she had to come up here for a heart cath. 

She was really good while we waited for them to come and get her, though.  She has discovered my IPOD Touch and loves to play on it.  So, the other day I downloaded some preschool games on it for her.  She would play them all day long if I let her.  But, it really did make waiting a million times easier, for me and for her.  Whatever she needs to take her mind of the scary stuff that's going on, is fine with me. 

They let me carry her into the cath lab and be with her while they gave her some sleepy stuff to breathe.  I wish all procedures could be like that. 

I'll update you later. 

Thanks for all the thoughts and prayers!

Wednesday, June 9, 2010

Heart Cath

Harlie's heart cath is tomorrow.  We have to check in at 11am, which works out great for traveling.  We *should* miss rush hour going into DC.

Tom is very busy at work right now designing some projects, so Jennifer is going with me.  Jennifer's husband broke his foot on Monday and he is having surgery tomorrow.  And Jennifer is still going with me!  I tried to change her mind, but she wouldn't have it.  I am so lucky to have such a great support network.  I am surrounded by wonderful people and I am oh so thankful for each and every one of you!

We will stay Thursday night and come home on Friday.  Hopefully, all will be smooth sailing with no surprises.  I am taking my computer, but have no idea when I can update you.  But, you know me.  I love to talk, so I'll do my best to keep you informed!

Please feel free to keep Harlie in your thoughts and prayers tomorrow.
Thank you!

Tuesday, June 8, 2010

Plastic Surgery follow up

So, today we went to Norfolk to see Harlie's plastic surgeon, Dr. Magee.  He said she was very "spry."  She was all over that office, checking every little thing out.  An ENT also came in to see her and he said she was very "busy."

Anyway, Dr. Magee said that she is going to need another advancement (jaw reconstruction).  That was not really news to me.  I figured as much.  He is going to have to put more bone on the right side to even up her mouth again.  Since the infected bone graft was removed from the right side only, her whole jaw shifted to the right.  He said he wouldn't even think about doing it any earlier than six months from now.  But, I told him that Tom and I would rather take our time getting this next one done.  There are other priorities right now.  And she's happy and functioning as she is, so we'll just leave it until we're ready for that again.

One thing that might force us to think about it (whether we are ready or not) is her chewing abilities. Not that she's chewing right now.  But, certainly that is a skill we would like to start working on at some point.  And he said that depends on if she can manipulate her jaw to make her teeth have contact.  They do not line up as it is right now.  So, we'll just have to see what she can do, when we get there.

The good news is that I had him take a look at her front tooth.  He said that it looks like it will be okay.  WHEW!  You can still see a bit of bruising on the inside of the tooth, but on the outside, it looks totally normal.  I will be so grateful if she keeps her tooth!

Well, that's it for tonight.  Thanks for reading!

Monday, June 7, 2010

Busy Monday

Today I took Harlie to preschool.  It is such a treat to see her in action at school.  She really loves it there.  When we left, we were going to the car, and I think she was a little sad that we weren't getting on the bus.

I went straight to pick up Murphy from school and then we went home.  Then put Harlie back in the car to go to her pre-op appointment with her pediatrician (for her heart cath on Thursday).  Unfortunately, the hospital wanted blood work done, so that meant that we had to go to the lab.  Luckily, my Mom could stay and hang out with the boys.

I was dreading them drawing blood.  But I am so happy to say that Iris (yes, I asked her name because she was AWESOME) did a wonderful job and got it on the first try.  To be honest, I was a little afraid of Iris at the beginning.  She wasn't exactly warm and fuzzy if you know what I mean.  While we were waiting in the waiting room, she barked at a guy that came in right at 5pm (closing time) and told him he had to leave because they close at 5:00.  I mean, he had already made it in the front door, how can you kick him out?  To prove her point, she looked at the clock at it said 4:59, so she grudgingly let him stay.

So, when she did such a great job, I was so happy and thankful that she completely changed into this sweet, happy lady.  It is amazing how much a person changes when they get some appreciation.  I'm betting that she doesn't hear many thank you's.

Anyway, the night goes on, and Cooper decides to try to climb up the back of the couch, and then say "Wee!" as he slides onto the couch.  Harlie sees him doing this, and, of course, wants to do it, too.  They weren't hurting anything, and it was really cute (not to mention good physical therapy for Harlie), so we let them play.  Somehow, Harlie banged her front tooth - on the COUCH - and hurt it.  The couch!  You know, the soft cushy thing you sit on?  How in the world did she hurt her tooth on the couch???

Well, it bled for a long time.  And when I was finally able to get her calm enough for me to have a look in there - I could clearly see that she got it good.  I'm not too concerned about the bleeding itself, she's on baby aspirin every day, so that could explain the excessive bleeding.  But, the whole area around the tooth is bruised.  To be honest, I'll be surprised if she doesn't lose it.  

Seriously???  During moments like these, I get mad.  For real?  Like she doesn't have enough oral/facial issues?  Can't she just keep her flippin' front teeth?!?!?!

Maybe I'm more worried/upset than I should be.  Maybe it will be okay.

Luckily, we have an appointment with her plastic surgeon tomorrow.  And he is/was a dentist or oral surgeon.  So, hopefully he will be able to tell me something.  Preferably something good.

Oh, and I have an ice cream update.  The other night, we went to Bruster's for ice cream.  We had a coupon and a gift card, so we scored.  It was funny.  As we were sitting on a bench, eating our ice cream, watching the kids play, Tom said, "Whoa, be careful.  This feels almost normal."  Of course, we tried to get Harlie to taste some.  No go.

So, Tom tried again tonight.  She finally relented and took a small spoonful.  Hopeful that she actually liked it, we offered her another bite.  Nope.  Not happening.  I don't believe she can taste much anyway.  I gave her some pureed strawberries and when I tasted them, oh boy were they tart!  So I gave them to her, thinking she should definitely have some reaction.  Nope.  Nothing.  So far the only thing she reacts to is thickness of the puree, or texture.  Oh well.  Hopefully that will change in the future.

More later!

Sunday, June 6, 2010

Marathon Training

Saturday was the first day of training for the Richmond Marathon. Here's a few of us at the meeting before the first run (from L to R: Heather, Kat, Niki and Allison).

Since there are a lot of people registered with the training group (I think they said about 1,000) they break everyone into smaller groups. Here's me and Heather and we are team Orange, obviously.

Here's Natalie and I.  We trained together for the Half Marathon last year.

To show you how many people are running on a Saturday (they have another group that runs on Sundays) here's the stadium during the meeting.

After the meeting, they went on the first run, four miles.  Without me.   Yes, I have suffered my first running injury - just five days before the start of training for my first marathon.  Ain't that some luck???

I'm terribly embarrassed at this injury.  It was self-inflicted, in that I thought I would experiment with a new running style when I went for a four mile run on Memorial Day.

Big mistake.

I over-worked or tore up my calf muscles.  I could barely walk on Tuesday and most of Wednesday.  Going up or down the stairs is agony, although it is getting better.  Just not nearly as fast as I would like.  On Friday, I attempted a little jog, just to see how it felt.  Running proved impossible.

It just so happens that I just started a book - Where is God When it Hurts? by Philip Yancey.  It was a gift from a friend of mine who saw it and thought of me.  :-)  Anyway, I finally started reading it.  And so far (I'm still in the beginning), it is about how incredible the design of our pain system is.  How it alerts us that something is wrong, and guides us in its repair.  It is actually quite fascinating and educational.

And right now, my calf muscles are telling me Ouch! and I need rest so that I can repair!

I don't think reading this book has much to do with my listening to my body.  My muscles aren't really giving me an option to not listen or to run through the pain.  I hurt.  Bad.  Walking down the stairs is still agony and I have to do it carefully (and preferably without carrying a child) so I don't set the recovery back.  I just hope it heals quickly so I can get caught up.  I will admit that I'm a little worried.  Tomorrow will be one week, and it is only a little bit better.  Resting the muscles is virtually impossible as a mom!!!  And when I can start running again, I'll have to take it easy.  That is NOT how I want to start training!  I have a lot of miles to run between now and November!  Not to mention what this inactivity is doing to my stress management.  It is now VERY clear to me that I need to run.

Talk about bad timing - for so many reasons!

On to other things...I have a killer week ahead.  Brandy is on vacation, we have an appointment in Norfolk with Harlie's plastic surgeon, and her heart cath on Thursday.  I know it might not sound like much, but since I have to go to school with Harlie, I have to have help with Cooper and Murphy.  And as a bonus, my car will be in the shop on Wednesday.  So, I'll get to ride the bus with Harlie to and from school.  That should be interesting.

I'm thinking I'm going to do a lot of blogging this week - as long as I can stay awake at the end of the day!

Well, that's enough of my whining for the moment.

Thanks for reading!

Thursday, June 3, 2010


Today I got this little girl...

this shirt.

The reason why I'm showing it to you is because it has a drink with a straw on it. And Harlie can wear it honestly, because she can drink out of a straw now. Isn't that something?

I have always avoided clothing items with ice cream or cookies or anything like that on them. In fact, they made me mad. I would stand in the store and say they ruined a perfectly good shirt with that stupid cute little ice cream cone. So, my next goal? Ice cream. If she liked ice cream I would let her eat it anytime she wanted. Even if she wanted it for breakfast. I think I'll try it tomorrow. I'll let you know how it goes.

Here's her silly little self really trying to smile for the camera.

Don't you just LOVE her?!?!?!

Hide and Seek

On Wednesday, Jennifer (one of Harlie's nurses) and Kyleigh (her daughter, same age as Harlie) were over. Kyleigh wanted to play hide and seek with Harlie. So, she started counting to 10 out loud. I was thinking that it was sad that Harlie couldn't count so Kyleigh could hide.

Harlie can count to 10 - but with sign. In fact, she just learned it last week. Just in case you're curious how to count to 10 in sign, here's a video...

Anyway, even though she can sign, that won't do much good for playing hide and seek. So, I was feeling a little bummed about it until I realized she could use her communication device! It has a numbers page! And I added a button that says "ready or not, here I come!"

It was the cutest thing! Harlie would count on the device and Kyleigh would hide in the bathroom. Harlie would go straight for the bathroom, open it, they would both laugh, then Harlie would go into the bathroom and Kyleigh would go and count. And Kyleigh would count using the device, too, which was really cute. But, if she took too long to count, Harlie would come out of her hiding spot. I guess she doesn't have a lot of patience.

It was the sweetest thing to see them playing together like that. And I think it is the perfect example of how beneficial a communication device can be. I love that thing. And she loves it, too.

More later!

Wednesday, June 2, 2010


I have a lot of catching up to do...

Harlie went to the dentist last week. Her last visit was in August 2009. And surprisingly, her dentist said her teeth looked good, all things considered. Well, since she was wired shut for 10 weeks, lost her front tooth, and she had some major staining after feeding her blueberries, I just thought it was time for a check up.

She was far from cooperative. But, the dentist was able to do what she needed to do. She saw some spots on some of her teeth and said she needed to check to make sure they weren't cavities. I held my breath and said some quick prayers that she would not find any. I really would rather not add having to take care of a cavity to our list right now. Especially since a procedure like that would have to be done under anesthesia, which would mean I would have to find a dentist at another facility to do it. Um, no thanks. I'm booked for the rest of the summer, thank you!

Thankfully, they don't appear to be cavities at this time. YAY! Just some staining from those bleeping blueberries! She told me to brush her teeth with baking soda. Which I haven't done yet. Oops.

Okay, more later!

Two weeks down, six to go.

Hi, I'm sorry it has been so long since my last post.  I have so much I want to say.  I've started to write this post several time...