Another Random Post

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Merry Christmas and much love!
Christy xoxo

A Good Update.

This post is so long overdue that I have no idea where to begin!

First, I think I'll start with Harlie's overall status.  A few weeks ago I was really down in the dumps about where we were.  I just wasn't prepared for the ten steps back post-surgery.  You might think that after 30 of them I would have the whole thing down-pat.  But, I don't.  Each surgery is a whole new experience.

But, I am so happy to report that Harlie is doing... GREAT!  Seriously!!!  It's like she saw how sad I was and said to herself, "Okay, I guess I should give mom a break, she looks like she's going to crack".

A little more than a week after that post, I could see an improvement in her drooling.  I didn't want to get my hopes up, so I didn't say anything.  After one day of improvement, she would have a day of no improvement.  This went on for about a week.  Then one day, she came home wearing the SAME clothes that I put on her in the morning.  And then I knew!!!  She figured out how to swallow!!  There are no words to describe my relief and happiness.  No. Words.

We see her feeding therapist on Thursday for an evaluation to see where she is and where we need to go from here.  I am so, so happy that she's able to swallow for this appointment.

Academically she is doing great, too!  I don't know which is more shocking - her ability to swallow or her academic progress!

The problem with her academics has been her lack of willingness to participate.  I think most of her teachers (and us) believed she was capable - she just didn't want to show us.  Over a week ago, she came home and the report from her nurse was that she just flat-out refused to do what her teachers told her to do.  Well, clearly, we can't allow that to continue.  Her favorite thing in the world is the computer.  So, I told her she was not allowed to get on the computer that day because she didn't listen to her teachers.  I told her that wasn't allowed and she's at school to learn and work hard and saying no isn't an option.  She was very upset.

But, the next day she listened!  And followed instructions!  Last year she struggled with beginning and ending sounds.  You know, like mouse starts with m.  But, in order to do that successfully, one has to know what "begins with" means and be able to hear the sound m makes.  If memory serves, she started to do it successfully a little bit at the end of the year.

But, look at her now...

Awesomeness!!!

I am so proud of her!  And another thing that I've noticed at home is that there is much less of a delay between me asking her a question and her answering.  There used to be a very long pause or no response at all.  She doesn't always answer me - sometimes she doesn't want to.  But, for the most part, if I ask her something, she answers in a timely manner.  This is a huge improvement!  And it seems that each improvement, leads to another improvement... which is a fabulous trend!

Another development is that we were able to get Harlie back on her speech therapist's schedule.  Her ST is awesome and I just knew that she would be booked solid.  But, somehow she found a spot for us and we are thrilled!  She's had two sessions so far, and they have both been wonderful. She's not perfect (Harlie, I mean) and doesn't always cooperate - but again, the improvement in her following instructions is remarkable (in my opinion).  So much time was spent on waiting Harlie out and trying to find something to motivate her enough to do whatever it was that Amy wanted her to do.  But, it seems there is very little waiting now.  And in her last session her not listening was her trying to be funny and joke around with Amy.  Overall, another huge improvement!

Last, but not least... Harlie has been able to wear her cap consistently for the first time since March!!!  A cap is a solid piece of plastic that covers the trach and prevents air from flowing through her trach.  It forces her to breathe - both in and out - through her mouth and nose.  It makes her voice so much more clear and understandable.  Even to herself!  So, learning to talk will come so much easier to her if she can wear her cap more.  I tried the cap on last week and as expected, she yanked it off immediately.  But, I knew she could do it.  So, one day we went to take Rooney for a walk and she wanted to take a toy with her.  I told her she could only take it if she wore her cap.  So, she put it back on, grabbed her toy and walked out the house.  She wore it for 45 minutes straight, with no problem whatsoever.  The next day at school, Terri put it on her at 7:30am and when she got home at 2:15pm she was STILL wearing it.

It is amazing to me how everything is falling into place.  Especially after how I felt just a few short weeks ago.

This little girl...

totally amazes me.  She really knows how to bounce back.

We go back to Boston Children's Hospital on October 19th for our follow-up appointment.  I am now looking forward to hear how they think she's doing and what's next...

I have much more to tell you - the We Heart Harlie 5k, Cooper's birthday (poor kid) and a whole bunch of other stuff... but it will have to wait for now.

Thanks for checking in!
Much love,
Christy xo

Adjusting

Things are okay here.  Harlie isn't letting the cast stop her, that's for sure.  She seems more and more energetic each day.  She's definitely still dealing with some pain.  And it's always on her right side behind her ear.  The drooling is awful.  Truly, truly awful.  I don't know how she's going to go to school like this.

Speaking of... I've decided to ask for homebound services for her, until she can go to school again.  She still needs the supplemental oxygen several times a day.  I'm so surprised considering how much she is up and around.  But, we take her off for a little while, and then check her sats to see how she's doing.  If she's hanging around 80, we put her back on.  If she's higher, we give her a little more time and then check her again later.  When we put her to bed tonight (Wednesday night), I was hoping she'd be in the 80s, but she was in the high 70s.  Ugh.  We'll just see how tomorrow goes.

The past few days have been an adjustment for me.  She seems to be adjusting faster than I am!  School started on Tuesday.  I really wanted to walk with Murphy to school.  But, school started for our nurse's kids, too, but they go later than my kids.  So, she can't get here till later.  I was hoping to get Harlie up and walk her down, too.  But, that didn't work out.  In fact, I was upstairs with her when Murphy went outside and Tom took pictures.  Ugh.  I feel like I missed it all.  I know I shouldn't complain.  Heck, I didn't know if I would even be home for the first day.  I should be happy!

But, it was still sad to see all the kids, all dressed and excited for the first day - especially siblings - that were going together - and knowing that Harlie wasn't one of them.  I don't think I'm ever going to be good with the fact that Harlie can't go to school with her brothers.

Cooper will go to preschool four days a week.  But, he doesn't start until next week.  Personally, I think that's insane and just plain cruel to the parents, and the kids.  WTH?  Why couldn't they start at the same time??

So, after Murphy left (on Tuesday), I spent most of the day walking in circles around my house looking at all the stuff that I was supposed to be doing - unpacking, putting away, washing, etc.  I literally did NOTHING.  I had no focus and no energy.  Today (Wednesday) wasn't much better.  But, I did manage to bring down the dirty laundry, sort it and start washing it.  So, that's something.  I just can't seem to start something AND finish it in a reasonable amount of time.  It's not only frustrating, it's terribly inefficient.  At one point I looked around and the soap was on the counter for the dishwasher, but I didn't get to put it IN the dishwasher and start it, the sheets were washed, but were not on the bed, and there were clothes in the washer, but the door wasn't shut.  It all just seemed too hard to do.

For some reason this morning (Wednesday), I wasn't handling Harlie's drooling so well.  I was thinking that maybe I should get her to drink by mouth.  Maybe her seeing the squirt bottle, and knowing that she needs to drink it would make her swallow it.  But she just squeezed some formula in her mouth and then it just sat there.  Ugh.  I couldn't make her swallow it.  I would tell her and she just shook her head no.  I got the feeling that she is scared that it will hurt if she swallows.  Frustrated, I called our feeding therapist.  We've had her since Harlie was just a few months old.  She knows us.  And she knows her stuff.  I left a message, thinking that she was probably with patients and who knew when she'd be able to call me back.  But, it must have been divine intervention - because she just happened to have an opening in her schedule, so she was able to call me right back!

It was so good to talk to her about this.  I brought her up to speed with how she's been doing and what's changed about her mouth.  One thing I forgot to blog about was a conversation we had with Harlie's oral surgeon.  She said that now that Harlie's teeth are aligned, because of her abnormal mouth shape, her back teeth touch before any of her other teeth touch.  So, that means she can't close her mouth.  Maybe I didn't blog about it because I didn't want to think about it.  The chain reaction of that fact is not a good one.  And I don't know what that all means.  Other than more surgery, obviously.  And more challenges in her speech and eating progress.  One of the functions I was hoping to gain was the ability for her to chew food.  I would think chewing would be more difficult with a mouth where the back teeth touch and none of the others do.

Anyway, the bottom line is that everything about her mouth is different than it was prior to surgery.  So, she's going to have to re-learn how to swallow and handle food in her mouth.  Plus, she still has some swelling.  And pain.  She said that if she can't swallow her secretions, then she's not going to be able to swallow a drink, or food.  So I need to give her more time.  I was thinking she was just being stubborn.

She also said that she just had major surgery.  And I had to laugh.  It is sad that she can have a major surgery like that and that I am expecting her to be back to herself (and maybe even improved) so soon.  What's considered serious vs. minor is so skewed in my mind.  You've been home for four days, Harlie, geez, what's your problem?

So, I need to have more patience.  And I need to give her more time.  And I need to get her back into feeding therapy.  She's going to do whatever she can to get us back on her schedule ASAP.  I felt so much better after talking to her.  I don't always know what to do.  And I am so glad that I have some good people in my corner to help me figure this stuff out and make the best decisions we can for Harlie.  And when I'm feeling down about things, I remember people like our feeding therapist, and that reminds me how lucky I am.  We have such a great support network - in every way.  Support in our spirits and support in the technical/medical aspects of raising Harlie.  I just couldn't do it without you all!

I certainly didn't expect immediate results from this surgery.  I promise!  I know it will be months and months (if not a year or more) before we know if this was successful for what we wanted it to accomplish (eating, breathing and speaking).  But, I certainly didn't anticipate an open mouth (that couldn't close) and the inability to swallow.  One could think swallowing should theoretically be easier if her jaw is more aligned, and pulled out of her airway.  But, it's not that easy.  And for future reference, it's never going to be that easy.

I'm trying to keep myself from being too scared of the future and from being disappointed so far.  I guess I just didn't realize we'd be taking 10 steps back.  I'll be okay with that if/when she makes 15 steps forward.

Our feeding therapist gave me some good questions to ask the surgeons about her mouth.  So, I need to get that e-mail out.  One thing he said we needed to do was to make sure that she opens and closes her mouth a lot to keep that bone in her TMJ from over-fusing (which wouldn't allow any movement).  But, we are struggling with that - and have no idea if she's opening it enough (as in actual opening distance vs. quantity of openings) or not.  And with her continued pain, I'm a little scared that some fusion has already started.  I don't know.

But that's one thing that our feeding therapist said she would help me with, too.  She said she'd show me how to get some regular mouth/jaw exercises in her day.

Speaking of exercises and therapy, I need to call her physical therapist, too, and get her back on her schedule.  Even though she's walking around well in the cast, when it comes off, she's going to be weaker in that leg.

So, look at the chain reaction of jaw surgery - decrease in ability to swallow, need to add feeding therapy back in our schedule, decrease in leg strength, need to add physical therapy in our schedule, decrease ability in verbalizations for communication, need to add/increase speech therapy in our schedule, can't attend school and need to add homebound services.

I know she looks great and all that good stuff, but all I'm trying to say is that despite all the positiveness, it's still hard right now.  It's just plain hard.  I want her to be able to talk to me!  I want her to get a break from pain and surgeries!

I try to be as positive as I can every day.  And I have since the day we found out that things were going to be rough for her (May 5, 2004).  But it is a challenge balancing out finding the positive, and being sad about our reality.  I mean, no one can be positive about everything all of the time, right???  But, then again, being sad about it doesn't really do any good, either.  I just wish we could be nearing the end of surgeries for her.  But, it doesn't look that way.  So, every time we go through it, we know it isn't our last.

Okay, it has taken me DAYS to write this stupid post and now I feel like it's all choppy and doesn't flow.  So I need to just end it.  And I really hate to end it with me complaining.  I really hate complaining.  I have so much to be thankful for.  So, please know that I know it will get better in time.

And when Cooper goes to school next week, maybe I can back to running again.  That usually makes me feel better.  Not immediately, of course.  Because usually running hurts while I'm running.  But, afterwards, I feel better.  I am not one of those runners that runs with a big run all energetic and all like, "Oh, look at me and how good I can run!  I'm all bouncy and fast and I'm so good I don't even need water!"  Nope.

I'm more like, "Oh God, it's hot.  It's so freaking hot.  I can do this!  One foot in front of the other.  Great, I'm doing it and feeling good about myself.  Ouch, my back kinda hurts.  Okay, big arms.  Faster arms means faster feet.  Land on my toes.  Keep my knees up.   Look straight ahead.  Chin up.  Think strong.  I can do this.  Beeeeeep!  What?!  It's only been ONE mile?  Are you kidding me????  Shit, it's HOT!  I need more water.  Cars are passing.  Can't walk with cars passing.  Damn!  What's up with this stupid traffic!  Oh, light please turn red, please turn red.  UGH!  I hope I don't pass out."

Then, I finish.  And get home.  And then I'm, "Oh, I am so glad I got that out of the way in the morning before it got too hot.  Whew!  Good run!"

Runners are stupid.  No, not really.  Most of the time, even when I'm cursing for most of the run, there's something that I actually enjoy.  I just don't know what it is exactly.  Do I enjoy hurting myself? I don't think so.  I certainly don't enjoy it in any other fashion.  I guess it's that it IS hard and somehow I do it and feel stronger because of it.  And I just think that if I feel strong physically, that somehow I'll be strong mentally and emotionally.  Because unlike the run, I don't have a choice in my daily life.  I HAVE to be strong for Harlie and for my family.

That's it.  Now I really gotta go and get some sleep.  I hope to have a much more focused post next time.  Thanks for reading!

Much love,
Christy xoxo

Great Day!

Harlie had a GREAT day today!

Feeding Therapy - 9:30 - 10:30

Today Allison worked on self-feeding.  She used a three-section plate containing oatmeal, fruit and milk (high calorie Pediasure).  The goal is to teach her that each section gets a turn with no skipping.  Allison drew three circles on a piece of paper.  After a bite she earned a sticker to put in a circle.  After earning three stickers in a row, she earned a prize, which she got to choose.

Of course it wasn't as simple as all that.  She was hardly cooperative at first.  And it took a few other tries before we reached the sticker/prize plan.  She doesn't like to eat when we're feeding it to her.  So our biggest hurdle is that she lacks the motivation to feed herself.  But, when she saw the miniature slinky, she grabbed the spoon and took a bite!  WOOHOO!!!

She ended up eating 2.8 ounces total almost all by herself!  It really was great.  And even better is that we only have to try that at home two times by next Thursday.  Awesome!  That gives me some time to go and collect some prizes to help motivate her to take her bites.

The Grocery Store - 11:00 - 11:30

On the way home from feeding therapy, Brandy and I decided that we wanted a vegetable tray for lunch.    She suggested that we all go to the store together.  So, we did.  Right as we walked in, I saw one of those little kid carts.  Harlie RARELY goes to the grocery store.  So, we put her in front of the cart and away she went.  She was slow, but she walked the entire time with no complaints.  In fact, she LOVED it!!!!

We started in the produce and I picked out some cucumbers, broccoli, carrots and a red bell pepper.  Harlie was behind me and decided that we needed a green bell pepper, too, so she picked one out and put it in her cart.  Then she smiled.  Oh, it was so cute!

Then we headed to the canned fruit aisle.  She stopped and pointed at the jars of applesauce.  It was so cute to see her recognize a food that she eats!!!  Of course, we had to walk down the candy aisle.  Even if I don't get anything, I always have to walk down the candy aisle.  While I had stopped to check out some new chocolate, Harlie grabbed a bag of sweet tarts and put them in the cart.  Ah, we had to laugh.  She doesn't eat it - never has - has no idea what it is - but wanted to put it in the cart.  It was the prettiest bag - colored with purple and yellow and pink, etc.  Funny stuff.  They sure know how to package things to appeal to kids.

She got such a kick out of putting stuff in the cart.  And she loved putting the stuff on the belt to check out.  I normally don't care for going to the grocery store.  But she made it so fun.  And she walked the entire time!  It was great!

11:30 - 2:00

We went home, unloaded the groceries and then I headed to pick up Cooper from preschool.  We all ate lunch and then I put Cooper down for a nap.

At one point, I took Harlie to the potty.  She stood on the step stool and looked at herself in the mirror.  Then she touched her chest, right under her trach.  Then she pulled her shirt down - with both hands - to look at her heart scar.  After looking for a while, she pulled her shirt up to her trach (higher than it lays naturally) and then signed, "better."  Did she mean that it is "better" to cover the scar????  Seriously?  I signed "pretty" - but then I felt kinda stupid for doing that.  I don't want her to think of her scar as ugly or that it should be covered up, but I also don't want to discount her feelings.  I tried to come up with something to call it.  I met someone years ago that called her son's scar his miracle line or magic line or something like that.  So, maybe we'll call it her miracle mark or something.

Then she got down and left.  I told Brandy about it and then she told me that earlier in the morning when Brandy was brushing her hair and teeth, that Harlie examined one side of her face in the mirror, and then slowly turned to look at the other side.  She did that several times.  So, it appears that she has noticed that they aren't the same.

Ugh.  I don't want her to be ashamed or embarrassed or feel anything negative about her scars or her facial features.  Every scar has allowed her to live and be happy.  I want her to be proud.  But I know she is far too young to understand any of that.  

That wasn't so great.  

At 1:45 I went to pick up Murphy from school.   Then we came home to get Brandy and Harlie for more therapy.   And my Mom came over to watch Cooper.

Physical Therapy 2:30 - 3:30

She did great.  Last week, Traci had a hard time getting Harlie to cooperate and follow instructions.  After a few minutes Traci looked at me and said, "Is her hearing aid on?"  I checked, and nope.  Sure enough the battery had died.  She was much more cooperative after I put a new battery in.  Go figure.

This week she listened and followed instructions.  She is so happy to go to physical therapy now.  She really has a lot of fun there.  Today Traci had her walk on the treadmill with an incline.  She did that for five minutes!  She also does exercises and weights.  She's so cute when she works out.

While Harlie was in therapy, I sat out in the waiting room with Murphy working on his school work and reading.  As luck would have it, Thursday is also Murphy's library day at school.  So he always has new library books for us to read while we wait.

During PT, Harlie's new speech therapist came out to ask me some questions.  While I was talking to her, Murphy said he needed to go to the bathroom.  To get to the bathroom there, you have to go through a door, then there is another room that has the bathrooms, a water fountain and a long hallway that leads I don't know where and an exterior door.

I have no idea how much time went by from Murphy leaving till I heard his voice.  At first I thought it was another patient there crying.  But it sort of sounded like Murphy.  So, I thought he had left the bathroom and gone back to where Harlie and Brandy were.  Then I realized that the voice was screaming "Mommy!!!"  So the speech therapist said, "Oh no, he might be locked in!"  So, I got up and ran back there and yes, he was locked in.  He had been screaming for me and banging on the door.  Oh, he was SO upset!!!  I felt so horrible!!!!  I had no idea how long he had been locked in there!

He said he saw the EXIT sign and tried to get out that way - thinking he could just go around outside the building and come back in through the front door - but that door was locked too.  He could have unlocked it himself by turning the deadbolt, but he must have been panicked by that time.  Oh, geez!  Poor kid!!!

Speech Therapy 3:30 - 4:15

Harlie's new speech therapist is Becca.  And I really think they hit it off.  She was very engaging and within minutes, she had Harlie saying words.  She was wearing her speaking valve (PMV) and some words were so clear that I could understand what she said by just hearing her (and not looking at her sign).  Like - yellow, open, bye-bye, eye and ear.  There were more, but I can't remember right now.  Bummer.  She really did great and it was wonderful to hear her talking so much!  I couldn't completely focus on her because Murphy was reading to me.  But, I could totally tell that she was having a good time and hopefully learning at the same time.

Her therapist has to get authorization so I don't know if that will happen in time for next week's therapy.  I hope so, though, because I really feel like it was a good session.  Becca said that Harlie said 20 words total during the session.  Awesome!!!

My chiropractor appointment 4:30 - 5:00

Luckily, my appointment was practically around the corner from Harlie's therapy.  So, we put a movie on for the kids and Brandy sat in the car with them while I went in.  And I am so happy to report that I can start running again - small mileage, flat terrain, easy running.  I'll see how that feels and then go from there.  I have a really good feeling that I will be fine.  I just have to remember to take it slow and not increase my mileage or speed too much, too fast.

Well, that's it for tonight.  I am falling asleep while writing this.  And tomorrow is another busy day!

Goodnight!
~Christy