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

Good stuff

Thursday night was back to school night at Harlie's school.  I can't remember if I mentioned it or not, but we made those "My Name is Harlie" books again and gave one to each student in her class.  It is weird to walk into a room and know that everyone knows who you are, and you not know anyone.  I just want to hide in situations like that.  So, I was a little nervous about going.

Anyway, I was shocked to hear that they said she was doing really well (for her, anyway).  It is so hard to find something to motivate her to do something she doesn't like, or something that she has to work really hard to do.  Most kids would be motivated with some M&Ms or goldfish, etc.  But, that won't work for her, obviously.  So, she makes her teachers work really hard.

So, I couldn't believe it when I saw this...

How freaking cute is this little robot?!  Her HH (hard of hearing) teacher said that the class drew these robots together, following instructions like, "draw a square in the middle of your page."  She followed all the instructions with no problem!  Woo Hoo!!!

They have a Doodle Diary they have to write a word in and draw a picture of every morning.  Here are her drawings so far...

I am so proud of her!!!  That monster is colored like Sully from Monsters, Inc.  Which makes me feel a little bit better about an incident on the playground the other day.

Harlie's nurse texted me to ask me if she could tell a little boy to go away if he was bothering Harlie.  He called her a monster.  I told her, yes, please tell him to go play elsewhere if he can't be nice.  No one would argue with that.  But then she said that a little girl that was sitting there told the little boy that she wasn't a monster.  And he went away.  Terri said that she didn't think Harlie was paying any attention to him.  Of course, it's hard to tell because it's normal for HH kids to look away when they don't want to "listen."  But, I'm hoping that maybe when she heard the word "monster" that she thought about Monsters, Inc.  Maybe?  Either way, she didn't and doesn't appear to be upset about it.

The next day Terri said that the same little boy came up and asked her a bunch of questions, like "can she talk?"  Terri said, "yes, if you listen very carefully, you can hear her."  Terri said that it looks like he has some issues he's dealing with himself.  So, we're cutting him some slack.  He could certainly have challenges that you can't see.  And the fact that he's asking questions is good.  He's curious.  He doesn't understand what's going on with her or what it all means.  He's probably never seen a trach before.  And once his questions are answered, he'll probably feel a lot more comfortable around her, and won't call her a monster.

But, before I learned that I went to the CCAkids website.  Earlier in the month I saw on Facebook that September was National Craniofacial Acceptance month.

So, I think I might make a flyer about why kids tease (info provided on that website).  And I think I want to do something next year since she'll be in first grade.  Even though these kids have already been introduced to Harlie in person, or through her book we provide to the classes "My Name is Harlie" the questions will change as the kids get older.  As they grow, and become more aware, they will notice more, or different things and their reaction will change, too.  They always seem better when their questions are answered.  So maybe I can make things easier with a little flyer.  Plus, even parents of typical kids could benefit from that information.

I've had some requests to put something on the blog, too.  So, I'll try to work on that.  The bottom line is that I want to do everything I can to make school a better experience for her.  I haven't been able to protect her medically - maybe I can make up for it, emotionally.

We had Murphy's back to school night the week before.  Here is a drawing we found in his desk...

I think it is so cute!  He drew himself walking Rooney.  He's wearing his favorite skeleton shirt.  Rooney's leash is green and the little bag carrier is blue.  I think he did a great job!

Speaking of Murphy...

Murphy's first day of 3rd Grade.  

Murphy holding a snake Tom found in the yard.

Murphy and Harlie during a walk.

This was a really good moment at home... Murphy and Harlie doing their homework together.  They kept on giggling and getting distracted with each other, but I loved it.

A couple of other things...

I secured some awesome private speech therapy for Harlie and her first session is tomorrow!  I was definitely worried about this.  I know that Harlie could really benefit from someone who can use Talk Tools.  They are plastic shapes that help teach her how her lips should form to make certain sounds.  Her last speech therapist used them on her and it was really good for her.  But, I thought for sure that she would be booked.  She's awesome and it's always hard to get on a schedule with a therapist in high demand.

So, I called and emailed her.  And not only did she find us a slot - but she hooked us up with another ST that is further along in her Talk Tools training than ours.  So, the two STs will be working with Harlie at the same time!  They even added a session in their day to accommodate Harlie.  I just can't believe it.  My conversation with her was great.  She believes in Harlie and her ability to learn how to overcome her challenges.  I am constantly reminded how lucky we are to have such great therapists in our life.  Thanks, Amy (ST), Allison (Feeding) and Traci (PT)!!!

Unfortunately, these STs are private - so no insurance.  And these hard working therapists do not come cheap.  So, for people wondering what we do with the money that is raised through the We Heart Harlie fundraisers - that's a huge part of it.  If you've donated before, you are helping teach Harlie how to TALK!  There's just no way we could ever thank you enough for that gift!!!

We now have our follow-up appointment to go to Boston.  We go on October 19 (also where the We Heart Harlie money goes).  Hopefully they will be able to make us feel better about where we are and where we go from here.  I think we are going to have to spend the night.  Considering our history with the airports, I think it's too risky to have to rush - especially on a Friday - and we don't know exactly when we would be able to leave the hospital.

Well, I think that's enough for this post.  I finally downloaded the photos from our camera (from the hospital) and will post some next time.

Thank you so much!
Christy xo

So, guess where I am...

At school, of course!  And I couldn't be happier.

I wish.

Harlie's happy and healthy and glad to be here.  And I am thankful.  I really don't want to complain.  I don't!  But no mom should go with her kindergartener to school every day.  Period.

And I have a job.  A whole list of duties and responsibilities I need to work on every day.  And when those things aren't done, it makes our evening more stressful.  It just creates a negative chain reaction, that we simply don't need.

The mornings would be so much better if Harlie could feed herself her own breakfast.  And then that makes me think that maybe I should bring self-feeding back to the top of our priority list.  But, I just can't do that right now.  One, there's no more room at the top of the list.  Two, there's a part of me that says that would negatively impact her progress in having refusal-free meals (which we are still immensely enjoying).  I just don't think I could push her right now.  And the only thing that's telling me that is my gut.  And I don't know how much I can trust that.  Because the reality is that working on self-feeding will be very time consuming.  And we simply don't have any more time.  None!

So, yesterday was our first new and hyped-up Therapy Thursday.  And it sucked.  I knew after the first therapy session that it wasn't going to work.

First of all, I'm freaking tired.  I feel like a wimp saying that.  But, I haven't been able to stop for a second all week.  Plus, I did my Adrenaline class on Tuesday (my last day of "freedom") and it kicked my ass.  Seriously.  Since the new year I really feel like he's amped up the difficulty.  Plus, I had done virtually nothing for almost two weeks (since the sickness period in our home).  So, it was a shock to say the least.  My body is still reminding me that it's pissed.  Oh, and that I'm 40.  Shut it, body!  I didn't ask you!  

So, we were supposed to leave around 12:30 to go to our first therapy session - ST with Delisa (to work on the communication device).  But, the class had C.O.W.s (computers on wheels - when they bring laptops into the classroom) and the work was really good stuff.

The teacher had them make a "movie" about measurements using Keynote on Mac.  There were six slides.  And they had to do something on each slide.  One slide they had to put the balls in order from smallest to largest.  On another they had to put animals in order from lightest to heaviest (I thought for sure she would struggle with that one).  Then they had to put people in order from shortest to tallest.  Then they had to measure an elephant and a turtle by dragging paperclips to measure how tall they were in paperclips.  I was so proud to see that she could do all of those without any problem!

So, I didn't want her to leave in the middle of that.  So, we were late getting going.  Then she had to go to the potty.  Then she walks so slow.  Then we finally got out of the building and then they tapped on the window for me to come back.  Then I went back into the building (Harlie was still walking back toward the building) when they told me that I left her freaking communication device in the classroom.  Good one - considering we were rushing to speech therapy to work on the communication device.  Boy, would I have really looked like an idiot!

So, I put all our stuff down (must get a rolling cart for all that crap!) and ran towards her classroom.  Luckily her teacher sent a student towards the office with it, so we met in the hallway (time saver!).  Then we rushed back out the door toward the car.  I had Harlie's backpack, lunch box, suction machine and my bag (which carried my laptop).  And that stuff is heavy!  I couldn't stand walking that slow - my arms and shoulders were killing me.  So I ran ahead and opened the car and put my stuff down, thinking, of course, that Harlie would continue her slow trek down the sidewalk.  I turned around and nope.  She had not taken another step since I left her.  UGH!  So I ran to get her and just had to carry her to the car.

Sometimes I wonder what we look like to other people.  We are a mess!

So, we're in the car and I'm driving the speed limit to therapy... when my gas light comes on.  Great.  So, I get us to therapy and that goes okay.  It was our first session.  I asked her how she labeled our therapy for insurance - like for speech therapy or augmentative device.  She said either way, it's considered speech therapy.  This story's getting kinda long... but since we already see a speech therapist, I was surprised that our insurance approved our therapy with Delisa, since they only pay for one ST - even though they might be focusing on two totally different things (which totally annoys me, but whatever).  Then I remembered that we had to switch insurances at the beginning of January.  That's another big mess - but I don't feel like talking about that right now.  So, since we haven't been to see Becca in a while, I had not given them our new info yet.  Which meant that when they went to get approval for Delisa, they didn't see another ST providing services.  Which meant that I was going to have to pay out of pocket for Becca.  And she is NOT inexpensive.  Oops.

Therapy went well.  She gave me some tips on how to use the device more.  And we left.

Therapy was from 1 to 2pm.  Physical therapy is at 2:30, 30 minutes away.  Which means I don't have the time to get gas.  But, obviously I can't NOT get gas.  So I had to stop, which of course, made us late for PT.  And no matter what, we're always late for PT.  It was while I was standing still at the pump that I realized this was too much.  I didn't pack enough food for me for the day.  And, more importantly, I didn't pack enough food for Harlie.  I totally forgot to pack her a can for the afternoon.  Crap.  And home seemed like an eternity away.  So, something's got to go.  Period.

For the next 30 minutes I thought about it.  Which therapy can I stop?  Becca is expecting a baby in March, so we're going to stop seeing her eventually anyway.  Plus, her session is only 30 minutes.  So, it seemed logical that we stop that one.  Although I think Becca is awesome.

And wouldn't you know?  We sit down for Becca's session and she tells me that she's moving!  So, we mutually broke up.  Each of us saying it's not you, it's me.  Funny how things work sometimes.

So, back home we go.  Whew!  It was a looooong day!  And if I was as tired as I was, I can only imagine how tired Harlie was.

We go home and enter another chaotic environment.  It was Murphy's last day to work on his ocean diorama (habitat in a shoebox) and you know he didn't do anything while I wasn't home.  And Cooper has been especially whiny lately.  I mean, like every sound out of his mouth is a whine.  I don't know if he's got some teeth coming in or something, or if he just knows that this week has been crazy and he doesn't like it.  But it's really pushing Tom and I to the limit.

But, I have to say, Tom has been great this week.  He has really pitched in and been super understanding that my days have been... unusually difficult this week.  He was pretty grumpy earlier.  And sometimes I just get worried.  I guess about us (his family) pushing him too hard to do too much.  Even though our life is so crazy, I still want him - and us - to be happy.  I want to know that he is still where he wants to be.  So we talked about what we like/don't like about how our life is right now.  It's so easy to be angry at the way things are - and then take it out on the ones you love.  And then it's so easy to misinterpret that.  Then things just snowball downhill.  And I don't want that to happen.  Sometimes just talking about it makes a big difference.  You've been heard and therefore, you feel better.  Maybe he should blog...

At any rate, talking about it really helped.  And boy am I glad we had that talk when we did!  Because if we hadn't talked before the last few days, who knows how bad it could be around here!

Well, it's lunchtime again (10 freaking 30!).  More later!

Thanks!
~Christy

School, nursing, therapy, etc.

I'm at school again with Harlie today.  Terri is sick.  And I don't have a back-up nurse.  Looks like I'm going to have to do something about that...

Our nurse situation has changed.  As is inevitable, I suppose.  I wanted to hold on to the way things were for as long as possible.  But, Jennifer's job changed, so her hours and demands did, too, making her less available to help us.  And Brandy helps out when she can.  And, Harlie's schedule is more demanding, too.

I get a sense of what it's like to be a single mom, dating.  Wanting to screen the dates and make sure it's a relationship worth introducing to the kids.  Except, I can't.  So, every nurse will meet the kids and it's more and more people they are seeing enter our house, leave our house, help take care of Harlie, etc.  Then they ask, "Where's ______?"  Well, really it's only Cooper who is asking.  And he doesn't understand.

So, that's fun.

I had plans today.  And Cooper's home today.  I have two people helping out with him today. And while I am SO thankful to have my little village of people that are always there when I need them (and you know who you are!!) it makes me sad that I can't be there, being his mom, and spending time with him. And that I can't honor my commitments.  And that I have to be so unreliable.

I will say there is something positive about seeing Harlie at school.  Yesterday I saw her pick up her new lunch box and show it to another mom who was waiting for her child.  She didn't know this mom.  She was just showing off her new lunch box, just like every other typical kid does.  When I am here, the kids come up to me all the time, showing me their shirts, lunch boxes, backpacks, necklaces, whatever.  And to see her doing something so typical, well, that's pretty cool.

In the mornings the kids have to write a word and draw a picture in their "doodle diaries."  I sat here and watched several of the kids take their notebooks to the teacher to show her.  I don't know if that's something that she asks them to do or if they just show her when they are particularly proud of that day's work.  Either way, after a few kids did it, I saw Harlie carry over her book and show her teacher.  Then she returned to her desk.  I was wondering if she would come show me, since I'm here.  But, no.  Which is actually a good thing.  She should be showing her teacher and not worrying about whoever is sitting at this desk.

Plus, I get to see how good the kids are with her.  I know that won't last forever.  So I'm going to enjoy it while it lasts.

Yesterday, during recess, she was on the swing and I was pushing her.  A bunch of the girls wanted to push her, too.  Harlie was laughing/humming while swinging.  A little girl heard her and asked what she was doing.  I told her she was happy and she was singing and laughing.  Then Harlie laughed (she does have a funny little laugh, that makes other people laugh, too).  And the little girl looked at me, all surprised and then laughed, too.  Then she told another little girl, "Harlie just laughed!" And then they all started laughing.  It was really, really cute.

So, for those moments, I'm glad to be here.

Anyway, on Friday Harlie had an appointment with the Feeding Clinic.  Even though she is not currently receiving feeding therapy, she still has to check in every six months with the team and nutritionist to be weighed in and make sure she's getting enough calories.

At five years old, she weighs 35 pounds.  That puts her in the 10th to 20th percentile.  Not bad.  But, her height is only 39.5 inches.  That puts her in the less than 3rd percentile.  Cooper, at three, is only an inch or so shorter than her!  It's really quite crazy how tiny she is compared to her classmates.

The doc also put her back on the waiting list to receive feeding therapy.  The waiting list is NINE months long!!!  So, by the time she gets back, she would have taken a whole year off from feeding therapy.  And that's if she is able to go into feeding therapy when her name comes up (depending on jaw surgery and recovery).  At this point, I don't know how I'm going to fit it in her schedule anyway.

Sometimes I think I'm a glutton for punishment.

I found - and added - another speech therapist to work with Harlie once a week.  So, she will now see her school ST (twice per week), Amy (once per week), Becca (once per week) and Delisa (once per week).  But, Delisa will work on her communication device, which no one else is doing.

I'm torn because all of this therapy means time out of school.  And all of it is important.  But, I can't always get therapy out of school hours.  I guess I will do this for this year (since she's repeating kindergarten, anyway).  And next year, we'll just see where we are.

So, now Thursday will really be Therapy Thursday.  She'll see Delisa at 1pm, then we'll rush over to the southside to see Traci (her PT) and then immediately after that, we'll see Becca.  What a long, hard day!

Since she's been sick, she's missed all this therapy for the last three weeks in a row.  And for the past few months, I've been meaning to schedule an appointment for her to see her cardiologist.  It's time for her yearly check-up, and I have a few questions.  Her heart rate has been dipping really low during the night while she's sleeping.  I now have to set her monitor to alarm if it dips to 35 bpm.  If the alarm is set to 40, it will alarm every night.  This alarm setting has slowly gotten lower and lower over time.  Not sure what's up with that.  I'm not too worried since I know that it's because of her heart block (which means sometimes there is a longer pause between beats and the pauses aren't even or consistent).  So, she recovers, and it doesn't stay that low for that long.  At least I don't think it does.

Anyway, I finally called the other day and he only sees patients on Thursday afternoons.  Of course.  So, she'll have to miss another whole day of therapies to see him.  I didn't make the appointment because I wanted to think about how long I'm willing to wait to see him so she can get some therapy in.  That kind of stuff just bugs me.

Well, we are off to the cafeteria for lunch (yes, at 10:30 AM).  So, I must wrap this up.

More later!
~Christy

Week Update

I have so much to write about.  But, of course, I don't have a lot of time.  So, I'll try to be quick.

Wednesday night Cooper woke up with a raging fever.  We took his temperature and it was 103.7.  He felt hotter than that.  We gave him some Tylenol and sat up with him for a little while.  His breathing was fast and labored, his cough was barky and his voice was very hoarse.  I'm sure he has croup.  After he calmed down a bit, we put him back to bed and he slept the rest of the night.  He's had a fever off and on since then.

The next morning, even though he still had a high fever, he was bouncing all around.  Lucky me.  He has a fever, he's still all barky sounding, he's clearly sick, yet he's still just as active as usual.  Yay.

But, on the positive side - I wasn't able to go run errands or go to the gym, so I had to stay home.  Which was great because I was able to get a lot of stuff done around here that I've not been able to do.  Like dust my bedroom.

OMG.  The dust in our bedroom was horrible.  I am shocked that we did not suffocate in our sleep.  For real.

But it's all gone now.  Ahhh.  And I feel so much better.

Harlie's IEP (Individualized Educational Plan) meeting was Tuesday.  You might remember this post about her getting her hearing impaired instruction in the special education classroom.  Well, we had to make this change on her IEP and take out her sign language interpreter service.  Now that she's trying to talk, she doesn't want to sign anymore.  Which is fine by me.  I still find myself signing to her on occasion, but I don't make her sign back to me.  I'd rather her use her communication device anyway.  Which she usually does without a fuss.  Oh, and we added a communication device implementation plan to her IEP, too.  Just trying to get that more incorporated into her day.  I have to call our local representative with the communication device company to see if he will come to Harlie's school to train some of the staff on how to use it.  I think that will help everyone if they understand the device a little better.  Including me!

We've also been working on getting an FM system for Harlie's hearing aid.  On Monday I took Harlie to her audiologist and she put a receiver or something on the back of Harlie's hearing aid.  Then the school adds something else to her aid when she gets in class and the teacher wears a microphone around her neck so that when the teacher talks, her voice is predominant in Harlie's hearing aid over all the other sounds.

That started on Wednesday or Thursday and that has been going well.  And while I was at her audiologist's office I borrowed a BAHA (bone anchored hearing aid) to try out.  I guess it's not a bone anchored one yet - it's on a soft head band.  And if it works, we'll have to get it bone anchored.  Her hearing impaired teacher has been using it in her class (since it's only Harlie and one other little girl the teacher can focus more on it) and it's been going GREAT!  In fact, her teacher called me this afternoon to tell me that she asked for it first thing this morning.  And that was after only one day!  She puts that aid on her non-hearing ear and it gives her sound through bone conduction.  So, I bet she hears so much better with it on.  I love that she wants to hear and wants to talk!  Progress will come so much easier and faster when she has the desire and determination to do it.  What a difference!!!

So, now I need to work on getting her the surgery to bone anchor that hearing aid.  They won't do it before age five because their skulls have to be a certain thickness.  They install an anchor in the skull and then the hearing aid clicks onto it.

I've also been working on getting her an appointment with the craniofacial team at Boston Children's Hospital.  So, I'll post about that soon.

Oh, and a few weeks ago, I took Harlie to a speech evaluation with a different speech therapist through our outpatient Children's Hospital here in town.  This particular speech therapist is really proficient with her communication device.  I thought for sure that our insurance wouldn't approve it because we are already receiving speech therapy once a week.  Without rambling too much (is that even possible?!) I scheduled that eval a long time ago.  And at the time I was thinking about paying cash for the speech therapist we see on Thursdays, Becca.  Here's who we see now:

Monday - Amy for 50 minutes (paid for privately, not through insurance)
Thursday - Becca for 30 minutes (paid for through insurance)
Various - Sharon for 30 minutes 2x per week at school

I was thinking of adding Delisa and paying her through insurance because her appointment would be an hour.  And her office is just a few minutes away vs. Becca's office which is 30 minutes away.  I would still keep Becca because I'm at her office anyway for physical therapy.  Plus, Delisa would be the only one working on her device.

But, after gathering all my info, I determined that Becca was too expensive to privately pay (not through insurance).  And I was thinking that maybe three private speech therapists was a little much.  I mean, she's still receiving speech therapy at school, two times a week for 30 minutes each session.  So, all in all, if I added another speech therapist she would be receiving ST from four different SLPs (speech language pathologists) totaling 3.5 hours per week!

I know it's kinda confusing.  And I thought my decision would be made pretty easy because I thought for sure insurance would deny us adding Delisa since they already pay Becca for ST services.  But, I got a phone call this week that it was approved!  Who knew?  So, now I'm trying to decide if four SLPs is really too much.  I honestly don't know how we'd fit it in her schedule.

But, I'm torn because there's a part of me that thinks if we give her MORE therapy she'll talk SOONER!  And isn't that a BIG deal?  A big enough deal to do WHATEVER you have to do???  Or is it just too much?

So, this is what it would look like:

Monday - Amy for 50 minutes (paid for privately, not through insurance)
Thursday - Becca for 30 minutes (paid for through insurance)
TBD - Delisa for 50 minutes (paid for through insurance)
Various - Sharon (30 minutes 2x a week at school)

My gut tells me it's too much.  But my heart says I want her to be able to communicate easier, better, faster, etc.

I don't know.  I guess I'll continue to mull it over.

Oh, and I'm considering co-leading a Daisy Troop for Harlie.  It's part of the Girl Scouts - you're a Daisy for KG through 1st grades, then a Brownie for (?) years, and then a Girl Scout.  And starting out as a Daisy, you pretty much have to form your own troop.  A group of us moms got together, but none of us really want to take on the responsibility of the Leader.  So, we're going to try co-leading.  I have no idea how I'm going to find the time for this.  But, I was thinking that Harlie and I rarely get to do anything fun together, Mother and Daughter.  All of our time is spent going to therapy and doctor appointments, etc.  So, this might be a fun way for us to take the time out to have fun and it will give her even more exposure and practice to playing with other girls her age.

Of course, her repeating kindergarten will throw a little wrench in things - but I'll deal with that later - if she likes it.

So I told Tom all of this and he said, "Just talk to me before you volunteer for anything.  And whatever you do - don't volunteer to be Cookie Mom."  I said, "Oops. I already did.  Volunteer for Cookie Mom, I mean."  What?  That means I'm volunteering to eat them, right?

Oh no.

Seriously, I was thinking that I would rather do that than plan an event or outing or something like that.  Because I HATE planning stuff.  So maybe if I'm Cookie Mom the other moms will go easy on me when it comes to planning shit wonderful activities for our girls to do.

So, our planning meeting is tonight over drinks and dinner.  Eh, we're starting out pretty well so far!  I can be bribed with food and drinks!

Now if I could just get that puppy, that would really round things out well around here!

Okay, that's my week in a nutshell.  I hope yours was as fun-filled as mine was!  Have a great weekend!

Thanks!
~Christy

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

Halloween 2011

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

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

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

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

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

Whatever.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And here are some more...

Kids.  They sure are funny.

Happy Halloween!  Whatever.
~Christy

Speech Therapy and her communication device

After our hearing appointment last week, we met a new speech therapist.  This is something I haven't been able to blog about.  So, to bring you up to speed, here's the low-down:

Since she's starting Kindergarten in the fall, I think it's imperative that she be able to communicate with her peers.  And they don't know sign language.  And, at home, it is getting increasingly frustrating - for all parties - to not know what she wants or needs all the time.  She is almost five years old (crazy!) and she has a lot of information in her head that she just can't get out.  

We were receiving one hour of speech therapy per week.  And because of the body cast and surgery, etc. it's been a while since that was consistent.  

So, I decided that I wanted her to get WAY more therapy - and I wanted it to focus on her communication device.  There is a physical therapy place (Hope Therapy) here that offers an "intensive physical therapy" program, where the patient goes every day for several weeks.  That got me thinking about doing the same thing (to a lesser degree, of course) with speech therapy.  So, I started calling some speech therapists to see if they had an interest in doing an intensive program with Harlie - focusing on her device - at least three times per week.  

Because of insurance red tape - this would never be approved.  So, because of the many wonderful, generous donators to The Harlie Fund (including the awesome Harlie Crew!!!) we have some money to pay for this service privately.  That will get us a lot more therapy - and a lot more freedom to do what we need to do to get her "talking" and having conversations with her device.  

I cannot tell you how incredibly excited I am about this!  And I cannot begin to tell you how thankful I am that we have been so blessed with people who care about Harlie enough to be generous with their hard-earned money!  Thank you so much for making this possible!  Just think - YOU are helping her TALK!!!  What an amazing gift!!!!  Words simply cannot express what this means to us!

And, as if that isn't great enough, we got super lucky and were able to hire Harlie's first speech therapist ever - Beth!  Woohoo!!!  We are so excited about having her back in our lives again!  

Beth called another speech therapist, Amy, and asked her if they could partner with this project.  Three sessions per week is a tall order for any therapist.  So, if they do it in a partnership, we are more likely to get all sessions in each week.  

And last week was our first week.  Harlie is SO ready to talk!  You show her where a word is on the device one time and she's got it forever.  I knew this already.  We've been using the device a lot more the last few months.  And she tries to build sentences completely on her own.  

Unfortunately, the larger device (which holds more words and has more options as far as past tense and ing words, etc.) would better suit her needs.  But we have to make this smaller one work for now.  This means a lot more programming time on the device.  So, just in case, if anyone knows of a Vantage Lite that someone is done using, please let me know.  As you can see, they are quite expensive and I don't think we qualify to get a new device for another three years, at least.

Last night I felt the difference between the two devices.  Cooper took a toy away from Harlie and she was upset and crying.  I knew she was playing with that toy earlier, and when I heard her crying, I saw Cooper had the toy, so I figured out what happened.  But, that's not always the case.  So, I wanted to show her how to tell me - using the device - that "Cooper took my toy."  But, there is no took.  Just take.  Which is clearly different.

It is amazing how much we learn about language development without even trying.  And when natural learning can't occur - how incredibly difficult it is to teach.  It is truly overwhelming.  But, luckily, she likes her device and is a willing participant.  So, I have high hopes!!

Thank you again to The Harlie Crew and all the generous contributors to The Harlie Fund for making this possible!
~Christy

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

Cub Scouts, Therapy and More!

*Note:  I wrote this post last night, but something went wrong and I couldn't post it until this morning.*

Sorry I've been MIA all week.  Well, for two weeks, really.  Just when I think I'm going to get caught up, I get more behind.  So, I'll just start and see where it takes me.

I'll have to save the Murphy/ADD update for another day.  Too much to write tonight.

Murphy joined the Cub Scouts.  Tom thought it would be a good way for him to learn team lessons (since he's not interested in sports) and we were thinking that maybe it would somehow help him with his school issues.  Can't hurt to try, right?

This past Monday was his first Den (?) meeting.  I have not learned all the right lingo yet.  I know he's a Tiger Cub and they are part of a Den, which is part of a Pack.  And I also know that Tom is now his Den Leader.  hehe  I know, cute, huh?  I also know that we had no business making another time commitment.  But the only thing Murphy does is gymnastics one afternoon a week.  And Tom thought it would be good for him (Murphy) to experience this.  And no, Tom was not a cub scout when he was a kid.

The girl scouts sell cookies (yum) and the boy scouts sell popcorn.  So, if you want some popcorn, you know who to call!!!

Cooper started preschool.  He goes three mornings a week.  The first week went great.  He walked into his classroom and said "bye" to me and went on about his business.  The second week he cried like no tomorrow and refused to enter the classroom.  The teacher takes him and he reaches over her shoulder for me calling "Mommy!  Mommy!" while crying hysterically.  It's quite torturous.  But, the teacher tells me that he only cries for a few seconds and goes on about his day.  He's happy when I pick him up and she always says he does great.  So, I think that's going well.  Hopefully each day he will cry less and less and then all will be well.

Last Thursday was a killer day (aka Therapy Thursday).  I had to run all over town, rushing to appointments.  Harlie has feeding, speech and physical therapies.  In between those appointments, Tom and I met at the pediatrician's office to discuss Murphy, and I had to pick up Cooper from preschool.  I also had to pick Murphy up early from school to take him with Harlie and I to physical therapy.  That way, while Harlie was getting therapy, I could help Murphy with his homework.  At some point during the day (I think it was during PT), someone HIT MY CAR!!  And did NOT leave a note.  Thank you very much, kind stranger.  UGH!  So, now I will have the wonderful inconvenience of having to get it fixed.  Great.  Luckily, I got to end that day with wine with a friend.  Ahhhh, there's nothing more healing than some good wine and laughs with a friend!

On Saturday the 9th, I ran my longest distance yet - 18.74 miles.  Wowza!!!  I ran for over three hours straight.  It was the hilliest run EVER with an elevation gain of 765 ft.   Prior to that run, my greatest elevation gain was 462 ft. during a 10-miler.  It was crazy hilly.  I burned over 1,800 calories (that should explain why I'm hungry most of the time).  And my heart rate averaged 85%.  Not too bad!  I am very proud of those numbers!  The only negatives (other than the hills, of course) was that I got a blister (and it hurt while running) and my IT band started hurting at mile 13.  That sucked.  It hurt like hell that last mile.  But, I took another ice bath, and I've been stretching it a lot.  So, hopefully it will be fine enough for me to finish this thing in one piece.  And then I went and got new shoes (the blister reminded me it was time).  I ran 5 miles on Tuesday night and 9 miles early Wednesday morning, and no IT band or blister issues.  So, that's a good sign.  This Saturday is a recovery week and we are just running 12 miles.  And I don't think they are going to be very hilly (running downhill doesn't help the IT band issues).  So, hopefully I can make it through those with no problems.  Then, on the 23rd, another big run - 20 miles.

On Sunday, Tom took Murphy to Carter Mountain to pick apples.  Last year, the family went.  But, this year, we just couldn't make it work.  There was no way I was going to push the double stroller up or down the mountain the day after my 18-mile run.  No way.  And there wasn't really another weekend that it could work anyway.  So, Tom took Murphy to breakfast and then they went and picked a ton of apples.  I did as little as possible while they were away.  But, I had Harlie and Cooper, so I didn't exactly rest.

On Tuesday of this week, Harlie had her 4-year old well check appointment.  That went fine.  Except she had to get five shots.  Oh, she was not happy about that.  But she remains in the 5th percentile for both height and weight, so that's good.  And she would be taller if it weren't for her vertebral issues.  At any rate, tiny as she is, she's doing great.

Today was Therapy Thursday again.  Oh, this day of the week wipes me OUT!  I know it may be hard to understand, but sitting there for therapies is exhausting!  I find myself willing her to do whatever it is they want her to do and that is very draining.  But, she's doing really well, I think.

Allison (her feeding therapist) gave her a soft piece of popcorn wrapped in mesh today.  Harlie didn't want any part of it.  But after some time she finally let her put it between her back teeth and she bit down on it some.  And she can now eat applesauce without me pureeing it.  The only problem is that she must get tired eating it like that, because toward the end of the feeding she gags on it.  Anyway, it's progress, so that's good.

And she did great in speech therapy today.  She said "Mama Duck" and some other two-word combinations.  Some of the words were only understandable because we knew what she was trying to say.  But, mama duck, I think anyone could have understood.  So, that's exciting.  Honestly, she tries to verbalize a lot.  Which is SO promising!

I had to cancel her physical therapy for today, though, to make room for her ENT follow up appointment.  I just tried to find where I blogged about her last ENT appointment, and it looks like I never did.  I thought for sure that I had talked about how the doc had to use a stainless steel catheter-type looking thing to suck all the ear gunk out of her canal.  But I must not have.  Anyway, yeah, Harlie was NOT a fan of that procedure.  Today her local ENT said that her ear tube is definitely out of her canal.  We are just going to wait and see what happens with her ears before we do anything else.  We are hoping she doesn't get any infections so we won't have to put another tube in.  Unfortunately, she didn't test very well afterwards (hearing-wise) so they are thinking there is some fluid behind her ear drum.  So, she's now on a nasal spray for the next 4-6 weeks to help that fluid drain.  That fluid is an infection risk and it doesn't help her hearing, either.  So, we'll go back in the next 4-6 weeks and see how things look.

I don't know if today wiped her out, or if she's coming down with something, but she was not acting like herself this afternoon.  I hope she was just tired.  Tomorrow morning she has gymnastics and she LOVES it.  I would hate for her to miss it.  Oh, I'll have to talk about that soon, too.  Her coach says she is doing great.  He said she is SO independent and not afraid of anything!  

Well, that's all I have time for tonight.  I really hope I can get back to updating you more regularly soon.  It is really hard to cover this much ground in one post!

Thanks for hanging in there!

~Christy