Feeding Therapy Update

Harlie is feeling better and went back to school today.  Today was Therapy Thursday, but her feeding therapist had to cancel and it was rainy and yucky outside, and I was feeling really crummy and tired, so I cancelled the rest of her therapies and sent her to school.  She finally has a morning bus assigned (I've been taking her to school every morning, except for Fridays, when she takes the bus).  It's confusing because her schedule is different on Thursdays and Fridays.  She goes to school at different times during the week.  It looks like she'll be taking the bus every morning starting next week, which is great.  For one, she loves it.  And for another, it will save me a ton of time every day.  That will be a great relief.

I have a lot to catch you up on, but I'll start with Feeding Therapy for now.

She has been on the waiting list for the intensive feeding program here in Richmond.  The feeding program is considered one of the best in the country and people travel from all over to attend.  Entry into this program has been a goal of ours from very early on.  Well, Harlie's name came up - and as crazy as it is - it turns out Harlie doesn't need it after all.

Seriously crazy.

So crazy, in fact, that it took me a few days to really come to grips with it.  It's just weird.  We've been talking about getting her to the point that she was a candidate for so long - it was kinda hard to accept.  And, this is a GOOD thing.  In fact, it's a GREAT thing (logistically I didn't know how we were going to do it anyway)!  The whole point of intensive feeding therapy is to get the child to eat a variety of foods, and to wean from the feeding tube.

And can you believe it?  We have done both!!!  Now wait... I should clarify.  We haven't completely weaned from her tube - but most days - she reaches her calorie goal - completely by mouth!!!  It's exhausting (for all parties) to feed her four times a day (and sometimes we have to tube her depending on what's going on).  The setting has to be "right."  We have not tried oral feedings out in public yet.  We are going to do that during therapy soon - we'll go into the cafeteria there and feed her and see how that goes.  I'm expecting that to be quite challenging.

So, we are hardly weaned from the tube.  But, we are so much closer than I ever thought we'd be.  And intensive feeding therapy just isn't necessary at this time.  I'm sure there will be plenty of opportunities.  She still has to learn how to handle some texture - and we can't even think about chewing.  Odds are she probably can't chew food until she has another jaw reconstruction to even out her jaw.  Ugh.

I think we would all agree that feeding her is a joyful experience when she's a willing participant.  But sometimes, she wants no part of it.

Nice, huh?

She's been wearing her PMV a lot more lately.  She definitely does better at keeping it on during school than when she's at home.  I know it's because she knows she can get away with it at home.  But, there are only so many battles I can fight at one time.  And I'm thinking the more she wears it at school, and sees that she can make sounds and get some attention, eventually getting her to keep it on all the time won't be a battle.

Here's her saying "dinosaur":

Pretty cute, huh?  You should hear her say "all done."  That is very clear.  Hearing her voice is totally awesome.  The other day, we went outside and she sneezed.  And it was the first time I had ever heard her sneeze - like a real sneeze sound!  It was so darn cute I stopped in my tracks.  I wanted her to do it again.  Talk about enjoying the little things!!!

Okay, that's it for tonight.  I will post some birthday pics soon.  

Thanks!
~Christy

Strep Rash

Yes.  I am slacking in my blogging.  I let Harlie's birthday go by without anything profound to say.  No videos (which I really wanted to do), either.  And now, several days later... NO PICTURES!!!

Well, it's all going to be late.  I hope.  But, I'm making no promises.  If it gets too late, it might not come at all.  I'm really having to let some things go in my life.  Simplify, if you will.

And I only have a few short minutes for this entry.  I am about to go meet some friends to run 8 miles.  Here's what I have to blog about (when I get some time):

Cooper's 2-year old well check up
Cooper started preschool on Tuesday!!!
Murphy and school issues (updates)
Harlie's feeding therapy and new developments

And, real quick - yesterday Harlie woke up sick.  I kinda felt like it had been coming on for a few days.  For the last week, she's been having some tough nights - needing LOTS of suctioning.  This has made for some tough nights for Tom and I.  Her days were fine though, so I wasn't really worried.

But, I took Cooper to his well check on Monday and he got the flu/HINI mist.  Monday night was Harlie's worst night yet!  I know we had to get up to suction her at least 10-15 times.  So, when Harlie woke up on Tuesday looking like she felt like crap (and indicated the same in her movements, or lack thereof) I was afraid that the mist had given her the flu (some things I'm not very educated in yet).  So, I took Cooper to his first day of preschool (more about that later) and then Brandy and I took Harlie to the doctor.

When we got there and her doc started to examine her, I noticed her skin was really rashy looking.  And her diaper area and top of her legs was RED - like really, really bad sunburn red (not like a diaper rash).  He took one look at her rash (now all over her torso even though it wasn't there when she got up 2 hours before) and said "Strep Rash."

He said after a day of antibiotics, she should be fine.  But she was miserable all day yesterday.  I called our night nurse and asked her if she wanted to work for us last night and luckily, she did.  So she came in and we got to sleep, which was GREAT!

Hopefully she will be feeling better today.  And hopefully no one else will catch it.

Okay, gotta run.  Literally.

More later!
~Christy

Happy Birthday!

Tomorrow (today, by the time you read this) is Harlie's 4th birthday.  I just can't believe it.  My, how time flies.

Saturday starts off with a 16-mile run (for me, of course).  Then I will hurry home and rush to get ready for Harlie's birthday party at noon.  No time for an ice bath for me!  Her party is at a playground.

Then after that we only have a few hours till we go out for a date night - a fundraiser for  The Richmond Hope Foundation.  I can't wait!

So, it is going to be so busy that I probably won't be able to blog much.  And I can't let Harlie's birthday go by without a post!  I'll blog more later about it, of course.

Then, Sunday is Cooper's 2nd birthday.  Wow.  He is getting so big, so fast.

Happy Birthday to my sweet babies!!!

A curious boy and a school update.

Just to lighten the mood for a minute... Can you guess who got into the steel cut oat supply at our house the other day?

Yes.  We eat a lot of oatmeal around here.  (It's a very good workout recovery meal.)  And Tom and a friend from work went in together and bought steel cut oats in bulk and split it.  Ahhh, where to store pounds and pounds of steel cut oats?

Um.  NOT on the floor!

Oh, that Cooper.  He sure does add a lot of work to my load.  He is very lucky that he's cute.  And so darn huggable!

And an update on the Murphy front:

First, I want to thank all of you who sent me personal, very well thought out messages!  You all offered such great advice, which I am totally going to use!  I am always so overwhelmed by your willingness to listen to me day after day, week after week, and take your valuable time to sit down and write out your thoughts and advice for me.  Who needs Google when you have a blog with knowledgeable, experienced, faithful readers?

Second, I want to thank all of you that have had to listen to me face to face and over the phone drone on and on about this subject!  Someone just tell me to shut up for once, okay?

You are all awesome.  Thank you!

So, for the update... I got a response today that was very informative and helpful.  So, I feel better.  What it boils down to is that he is not listening, paying attention or staying on task.  He gets easily distracted.  And for some crazy reason, he isn't very confident in his ability to learn.  

We clearly have our work cut out for us.  Today she said that she had him sitting beside her working on his assignment.  And he still didn't do it correctly.  He is just not listening to the instructions.  And once he doesn't know what to do, he checks out.

We do have to repeat ourselves a lot around here.  Heck, we have to tell him to go and put on his pajamas no less than 5 times on average.  And he'll get distracted in the 10 feet between the bathroom and his bedroom.  It is frustrating.  So, I can imagine if he were in a classroom with 20+ students, the teacher can't tell him what to do 5 times.  Of course, I can't believe that he is the only student with this problem, right?  This sounds like most 6-year olds if you ask me!

Anyway, I have a meeting set up with the school counselor tomorrow.  She knows me, Murphy and Harlie - and knows our living situation.  So, hopefully she'll be able to give me some insight, tips and suggestions to get things turned around.  They have to deal with this on a regular basis (right?) so maybe they have some resources in place already that could help.

So, I feel slightly better now that I know where we should focus our attention.  And once I get the counselor on board, I think that will definitely help, too.

And the bottom line is that I don't believe anything is wrong with him.  He is a typical 6-year old boy who wants to play rather than do his work in school.  But I want school to be a positive experience for him.  And I don't want him to fall behind.

We just need to build his confidence and his attention span.  And find his listening ears.  And his motivation and drive to learn.  And get him to eat something other than peanut butter and jelly for lunch every day.

I will certainly let you know how things go!

Again - thank you, thank you, thank you!
~Christy

PS - I do have a bunch of Harlie updates, but there's only so much time in the day and I guess it's fitting that Murphy take front seat for a change.

First grade is hard!

So, it is late and I have no business being up because I have to wake up at 4 freaking 45 in the morning to run.  However, I have a LOT on my mind and sleep is not coming easily to me.  As this blog, and you, my faithful readers have always been my therapy, I'm really feeling the need to write about my troubles.

And for the FIRST TIME EVER my troubles are about my wonderfully laid back, flexible, very social, very funny and seemingly smart son, Murphy.  First grade is not coming easy to him or to me, quite frankly.  I know my way around a hospital.  I know how to talk to a doctor, a nurse and a therapist.  But I don't know first grade.  And I have a baaaaad feeling that I'm going to know my way around an elementary school, more than I ever wanted, pretty soon.

All I know at this point is that he is struggling in many areas and I'm thinking not academically, but as of right now, that hasn't been confirmed.  My gut tells me he is a typical 6-year old boy, coming out of Kindergarten and a 3-month summer break.  He wants to play.  And he's probably not that interested in learning much - especially in a very structured environment.  And it is only the 3rd week of school.

Without more information (which the lack of is KILLING me by the way) it is very hard for Tom and I to properly address him on the home front.  Believe me, we are trying.  But after some very hefty talks, he went and had what I'm thinking was his worst day yet!  I actually got a note sent home that I had to sign and return.  So, perhaps this information that we have not received would require a change in the way we are handling things? Hmm....

With all of Harlie's medical issues, I've really believed that it does "take a village."  And I've really felt lucky that we've had such a great team of people working with us (and I do truly believe that these people work WITH us) helping us help Harlie to achieve goals that are age and developmentally appropriate.  I believe that we ALL want the best for Harlie and are willing to do what we need to do to give her the best opportunities we can.

Sadly, I'm not feeling this way so far about first grade.  There has been so little communication and I really don't know how to handle that!  My gut's just not liking the situation and where it looks like we're heading.  And can I just say that this has been shocking for us?  Murphy did great in Kindergarten.  I never heard anything negative about Murphy's behavior from his teacher.  And he loved school!

I am hopeful that I am reading too much into the information that I've been given and that I, too, am just transitioning into the world of first grade.  I am trying my best to be patient.  And if it were that serious they wouldn't want to wait to address it, either.  Or maybe they are gathering up information to hit us hard with later.  Oh, where is my positive thinking when I need it?

This has been weighing so heavy on my mind since last Wednesday.  My head hurts and this situation is to blame.  On Wednesday I got a note that said that Murphy was struggling.  I asked for more specifics.  And two days went by with no reply.  Friday afternoon I got a note that said that she was waiting till after testing to talk to me.  And testing is happening now through sometime in October.  Yeah, I couldn't wait.  So I called her.  He's not completing his work in class (he's probably day dreaming or looking at the crazy amount of stuff plastered all over the room).  He doesn't appear to be playing with anyone in his class (but he tells us that he's playing with his old classmates on the playground at recess), and she wanted to test him because she was thinking he didn't know the material and that's why he wasn't completing his work (waiting to hear how he did now).  And she summed up the conversation by saying he is "miserable" in class.

My heart was broken.  And I cried.  I CRIED!!!  That is SO NOT me!!!  I've heard WAY WORSE and not cried before.  Trust me.  And I don't like to cry - or talk about me crying.  So, I'm really going out on a limb here.  There are times when I feel that too much is being asked of me.  And that was one of those times.  I hear that I am strong.  But there are plenty of times I don't feel that way.  Murphy is my easy kid.  He's the balance.  If he shifts to the other side - I'm tipping over.  Simple as that.  I don't know how I'm going to handle this when added to the load I'm already handling.

See, the problem is that I'm not all fresh and energetic with my first born entering first grade.  No.  I'm all tuckered out, patience worn thin, and overloaded with plenty of issues, therapies, doctor's appointments and the like.  And my heart was already broken.  I'm already in pain (the kind of pain that will live with me forever but that's a deeper discussion for another time).  In summary, I'm raw.  Battle wounds unhealed.  Not really physically or mentally ready to go back in to fight another war.  Okay, maybe that's a little dramatic.  But, still, it's how I feel.

But again, as with so much that lands on my plate, I don't have a choice.  I must find the strength somehow, somewhere.  And it scares me.  What if I don't have it?  What if I screw it up?  What if I don't make the right decisions?  Oh, please let me be blowing this all out of proportion!  Please let my feelings be "rookie" experiences that I will look back and laugh at later.  I have heard from so many moms that the first months of a new grade is always an adjustment.  He's 6.  He's a boy.  There is nothing wrong with him.  He wants to play and pretend and he wants to be outside.  In so many ways, I can't blame him.  You're only a kid once.  And it goes by too fast.

Hopefully I'll get more information soon so I can calm down and go back to being my normal happy (but tired) self.

As always, thanks for reading!
Christy

Another great moment!

Today was another successful day of Harlie wearing her PMV.  It is SO exciting!  And not just for talking.  Wearing it causes a chain reaction of positive things like a better, stronger swallow, less secretions - which means less coughing and less suctioning (can I get an Amen?) AND communication!!!  Woohoo!!!

So, tonight was back to school night at Murphy's school.  I walked there and Tom stayed here with the kids.  On my way there Tom called my cell phone.  He said, "Listen to this". And held the phone up to Harlie and I HEARD her say - CLEAR AS A BELL - "My turn".  It was the coolest thing EVER!  I couldn't believe it was her!!!  It was SO awesome to hear her on the phone!!!!  What a great moment!!!

Earlier today she said "dinosaur."  I need to get that on video.  She is very faint when she says it - almost a whisper.  But it is SO cute!!!

Although she is making HUGE strides (I can only guess that progress will really start to take off as soon as she realizes what her talking can do for her) communication is still difficult.  Tonight after we put her to bed she started crying.  She never does that.  She really never cries unless something is hurting her or she didn't get what she wanted (and that usually only lasts a few seconds).  I went up there and I'm assuming that she was scared - but that's really only a guess.  She appeared to be looking at something in particular - but I couldn't figure out what it was.  I'm thinking that maybe it was a shadow that she could see before I turned the hall light on and that she was looking for it when I was there.  I don't know.  At any rate, she wouldn't use any signs or her communication device to try to tell me what was wrong.  We just sat there for a few minutes and she finally laid back down.  It was weird.  I hope she didn't see dead people. Because that would be freaky.

Today was Therapy Day.  I forgot my camera.  But I just realized that I never showed you the pictures from last week's physical therapy appointment.  So, here's a video:

Personally, I was pretty impressed she could do that.

Here's Harlie and Traci scooting around...

And Traci tested out a lift for Harlie's right shoe.  You might remember this photo from a few posts back...

As you can see, her right foot has to be on it's toes in order for her to stand "straight."  Since her hips are crooked it gives the appearance that one leg is longer than the other.  So, we are going to work on getting her a lift for the "shorter" leg.  Unfortunately, it looks like she's going to need one that is about a half-inch or more thick - so it will be too thick to fit in her shoe.  So, we'll probably have to get one that goes on the outside of the shoe.

Okay, that's it for now.  Just wanted to tell you about Harlie's talking!!!!  It is so fun to type that!!!  Who knew that she would be doing this now????  Crazy!!!!

Thanks,
Christy

PMV and Cardiology News

I don't have a lot of time tonight, but wanted to give you a quick update on how things are going...

Harlie is doing GREAT in school!  She started seeing her Hearing Impaired (HI) Teacher between 9:30 - 11am.  She gets instruction with another little girl from her class.  And they have older HI kids come in to sign with them, too, which is pretty cool.  And since it is just Harlie and her friend, L, it is good, concentrated instruction.  Both Jennifer and Brandy have said that it is awesome to see Harlie engaged, participating, learning and having fun - all at the same time!  This instruction just started on Monday and already I've noticed a big difference.

One BIG, ENORMOUS, HUGE change is that she has worn her PMV for HOURS, ALMOST ALL DAY for the past TWO days in a row!!!!!!  A PMV is a one way valve, that allows air in the trach when you inhale, but doesn't allow air out the trach, forcing the air to go up through the vocal cords and out your mouth and nose.  Here is a quick video that explains it.  And here is a video that explains the benefits of wearing one.  Pretty amazing stuff.

We have been trying to get her to tolerate a PMV for years.  But, with an upper airway occlusion (her jaw blocking her airway) a PMV is not an option because air can not get out through the mouth and nose.  After her first jaw reconstruction in June of 2008, we did get some PMV use out of her, but she's never been able to wear it for any substantial amount of time.

Until NOW!!!

Brandy put on her PMV at the beginning of her HI class and she wore it for HOURS straight!  We couldn't even get it on her prior to then!!! And in two days, she's wearing it almost ALL DAY!!!!

Don't get me wrong.  I think this is a WONDERFUL, AMAZING move forward.  However, I cannot think/believe that it will be smooth sailing from here on out.  If only.  So, when I went to pick Harlie and Brandy up to go to Harlie's cardiology appointment on Tuesday and  Harlie was wearing the PMV, I couldn't believe my eyes!!!  I was speechless.  I thought I was going to cry tears of joy.  What an accomplishment!!!  If she were to wear her PMV regularly, we could hear her voice!  We could hear her laugh!  We could hear her cry!!!  Wouldn't that be AMAZING?!?!?  But these are things I don't normally let myself think about.  And the emotions of feeling all that left me spent later on that night.  It wiped me out.  Feeling those kinds of emotions takes a lot of energy!  And I KNOW it won't be that easy.  It's never that easy.  But it is a start.  A wonderful, wonderful start!!!

OH!  And she is learning to write her name!  Very cool stuff!!!

As far as her cardiology appointment - it went well.  They did an echo (ultrasound of her heart) and things look the same as before (which is a good thing in that things aren't getting worse).  She has some leaking where she had surgery in June of 2009.  That was when they created another way for blood to leave her heart to go to her body.  So where they did that, some blood is leaking.  So far it is a mild leak, so we will do nothing until it becomes worse.

Her oxygen saturation levels (sats) are definitely getting better - they are in the mid-80's now, which is a great improvement.  We are so happy about that!

She has been dropping her heart rate at night.  The pulse ox alarms when the heart rate drops to 50 bpm or less and we have had to change that to 45 to get it to not alarm each night.  That is her junctional rhythm coming into play.  Her doc says that she is fine when she is up and active during the day, but at night when she sleeps, junctional rhythm happens more easily.  I'm not doing a great job explaining it, but it is late and I am tired.

The most important thing to know is that when she goes into junctional rhythm, her body recovers in time and her regular, irregular heart beat comes back.  So, again, we will do nothing until it becomes more of a problem.  She already has the pacemaker leads connected and ready to go - but being paced has it's share of issues - so it isn't something you want to do unless you have to.  For right now, she is fine and good, her doc is happy so we are happy.

To update you on Cooper and gymnastics... I had them credit our account so Harlie can use it for the next session.  He is not going back anytime soon.  He is just not ready.  He needs a big open field where he can run.  Not a gymnastics room.

Okay, there's more, but I'm done for the night.  I hope you have a good one!

Thanks,
Christy

Gymnastics. The Good. The Bad. And the Ugly.

So, this morning Brandy and I took Harlie and Cooper to their first gymnastics class.  The class is from 9:15 to 10:00.  A 9:15 start time is a bit of a lofty goal for us - but I didn't really have much choice.  Harlie needs to be back home in time to catch the bus at 10:30.

Their classes are at the same time, in different rooms.  I chose to put Harlie in the 3-year old class vs. the 4-year old class because the class time is 15 minutes shorter (just in case she tires out) and I thought she would actually fit in better as far as physical ability with the younger girls.

Cooper is in a parent/child class.  Typically, I'm not a big fan of parent/child classes.  To be honest, I feel really silly in them and frankly, I'm not very good at helping my child get excited about whatever it is they want us to get the kids excited about.  Especially in a group setting.  BUT, I am willing to do what I need to do for my children's happiness and well-being.  Aren't I a good mom???

Back to the 9:15 start time being a lofty goal for us...

Harlie is NOT an easy child to get up in the morning.  Nine times out of ten we have to work pretty hard and long to wake her up and get her moving.  I don't know why.  She goes to bed at a decent time (usually by 8pm) and sleeps all through the night.  Twelve hours of sleep should be good enough, right? Then after getting her up, she needs to get her meds, she needs to be fed (which takes FOREVER) and we have to prepare her lunch, etc.

We did our best (after working very diligently) and got both kids out the door and in the car by 9:05am.  We pulled into the parking lot at 9:17am.  I know that I should have done whatever I should have done to get us there earlier.  I knew I was going to have to speak to the owners about Harlie's abilities and answer whatever questions they had for the instructors to feel comfortable with her.  But, I couldn't.  Sometimes it's just not possible.  Period.  I do my best and that's all I can do.  It's not like I was goofing off and, oops! guess I won't do that again.  No, it wasn't like that at all.

I suppose I could have gotten up earlier - before the kids - and prepared her breakfast and lunch, showered, dressed, packed her bags, etc.  But, I was tired.  And training for a marathon, my rest is important, too!  Maybe I should have done that stuff last night.  But I was busy doing other stuff that needed to be done.  So, that really wasn't an option, either.  Anyway, my point is that I'm NEVER early to anything, and not for lack of trying, either.  And if I'm only a couple of minutes late - I personally think that's an accomplishment.

So, we get the kids in the door and one of the owners comes up to us and asks if that's Harlie.  He is going to be her instructor and just had a few questions.

Of course Cooper isn't going to stick around for this conversation, so off he goes into the playroom they have there for waiting kids.  He knows about this room because we were just there with Murphy on Tuesday.

So, when I go to collect him from the playroom, he is not a happy camper.  Nor is he when I open the door to the parent/child class where all the punctual parents are sitting with their well behaved children sitting nicely on their laps, listening attentively to the instructor.  Cooper wails and squirms until I put him down and proceeds to take off and run amok through the room.  And, of course, I have to go leaping over equipment to catch him, and return him to "our" spot in the circle.  Well, let me tell you - he wanted NOTHING to do with any type of circle time or instructions given by anyone.

We were quite a sight, and not in a good way.  The more I tried to calm him down or keep him from running amok, the worse he got.  During the screaming and flailing, the instructor was still trying to keep the attention of the rest of the class and give instructions, while keeping all of this "fun."

At one point I asked one of the instructors, "what's the age range of this class again"?  And at another point, one of the instructors said, "Well it helps if you get here on time so he can listen to the rules".  hehe.  Yeah, right.  Cooper won't sit and listen to rules.  Are you kidding me?  Do kids his age even DO that????  And I wanted to say, "you have no idea how much work it took to get us here late, much less on-time"!

I couldn't make eye contact with anyone in the class.  The only person I saw (other than the instructors) was a mom who's son was in Murphy's class last year.  Honestly, I couldn't believe that she acknowledged that she knew me by saying hello to me.  Had she completely ignored me, I wouldn't have blamed her.  She asked me who Murphy got as a teacher this year.  But, that's as much as we could talk considering the circumstances.  She gave me the "I've been there - know how you feel" sympathy kind of look, which was very comforting and much appreciated.

There was no choice but to remove him from the class.  And frankly, I wanted the world to swallow me whole anyway.  I seriously couldn't get out of there fast enough.  The instructor said I should try to re-enter the room when they got on the equipment and maybe he would be better.

So, we waited until the kids started working their way around the room on the equipment and I brought him back in.  He just wanted to run amok again.  Which was even worse because now instead of just equipment I had to jump over to catch him, there were children everywhere!  The instructors were trying to catch him and contain him and engage him in activities - all to no avail!  To him - there was no one else in the room.  It was all about him and what he wanted to do.  Period.  He was an absolute wild child.  Like he was raised-by-wolves wild!

I could feel all eyes on me.  Judging me and my child.  And I know they are wrong.  Whatever they were thinking - they don't have a CLUE about me or my child or our life.  I know that.  But, it's really no consolation.  I was still embarrassed and very disappointed in my choice to enroll him in this class.  WHAT WAS I THINKING?!?!?!

We left again.  This time for good.  I came out of the room a disheveled sweaty mess.  Beaten.  By a 23-month old little boy.  In public.

Brandy came out of the room that Harlie was in and said she could hear Cooper crying.  She offered to take him so I could go watch Harlie.  Thank God for Brandy.  So, I went and watched Harlie and she was so stinking cute, it killed me!  The instructor would demonstrate what he wanted her to do, and she would watch, and then do the best she could.

There is such a difference between the way she moves and what she can do versus the way the other little girls moved and what they could do.  I am so thankful that she can do all she can, but I can't help but be a little sad, too.  Right now she doesn't notice.  But what's going to happen when she does?  And when will that be?   And she required a lot of one-on-one instruction.  Luckily, there were two instructors and four girls.

But, she stood in line, waited her turn, did what they asked her to do and looked like she was having a lot of fun.  The instructor said that she wasn't afraid of anything and that sometimes she held out her hand for assistance, but a lot of the times she refused his help, which he said wasn't disrespectful, just her way of saying she wanted to do it herself.  And he said she was very independent.  He said that if the class size stays the same - she will be great.  I asked him if I could pay a little extra if another instructor needed to be added for her.  Remember that he's the owner - he said that their job is to keep the kids safe, and if adding an instructor is required to keep her safe, they will not ask me to do that.  Isn't that great?!

So, in Harlie's case - a complete success!  I can't wait to see how things change from week to week.

After we got in the car to rush home so Harlie could catch the bus, I decided that I would call the gym and ask them to take Cooper's payment for his class and just apply it to Harlie's next session.  I really can't imagine taking him back there, to that class.  

But, a friend of mine said I should think about it over the weekend, calm down and make that decision next week.  I might ask the owners if he can go in that room when a class isn't in session so he can run amok and get it out of his system.  There was another mom there who said that her child was just like that for EIGHT weeks, until she finally got it and started participating like everyone else.  What I can tell you is that I don't have it in me to go through that.  No way.  I have too many other battles - I'm not paying money to fight that one.

Another thing - I know he needs more structure.  He's never been in line, or waited his turn, or been told to "freeze!"  He's never been to the library for story time where he had to sit and listen.  Our life just hasn't afforded him those experiences.  So, I'll see what I can do about exposing him to some of that and maybe just try again later.  I guess I'll see what they say and go from there.

Later in the afternoon, I heard a knock on the door.  Went to answer it and it was that mom that I knew from the parent/child class - with these sunflowers and a card for me!

Seriously???  What a nice person she is to bring me flowers and a card - knowing that I felt like crap about this morning's fiasco.  She totally made my day!  I really do feel lucky sometimes.  And loved.  Very, very loved.  Just not by strangers in the Otter/Pup gymnastics class.  Thank you, Brittany, for going out of your way to make me feel better!

That does make me wonder.... maybe the other parents just felt sorry for me.  Maybe they weren't judging me after all.  Yeah, let's go with that.

Well, it's Friday night, I have fresh sunflowers in a vase on my table for the first time in, well, ever.  The first week of 1st grade is over (thankfully! I'll write more about that in a future post) and the weather is cooling down nicely for a 55-degree, 15-mile run in the morning.  I think everything's going to be okay.

Thanks for reading.  And for not judging me.  In a bad way.  You can judge me in a good way, though.  If there is such a thing.
~Christy

First Day of School!

YAY!  Today was the first day of school for Murphy and Harlie.  The morning went smoothly and everyone got where they needed to be - with time to spare.

This is how I found Harlie when I went in her room this morning...

Here's the three of us getting ready to walk to school...

Here are two silly dads trying to figure out if they were happy or sad about school starting.  Tom is clearly faking his sadness.  And Preston looks like he's come to terms with his emotions...

The first week they let us walk the kids to their classroom.

Back home for Harlie's turn to go.  I decided to let her skip the hearing impairment instruction today for the bus ride.  She was so excited.  I think it was a good call.

Here's Brandy and Harlie.  Harlie was not being cooperative with the pictures today.

Putting the harness on for the bus ride...

Her going up the stairs - all by herself!  I love this bus driver!  She is so nice.  I hope we get to keep her!

All secure for the ride to school...

And a token pic of Cooper just so he doesn't feel too left out...

And everyone had a good day.  It was fun picking Murphy up at the end of the day.  Two of my neighbors have kindergartners, so we all got to be there to get the kids.  It was chaos for a few minutes as all the kids were dismissed.  But fun chaos.  It is nice to get back into the groove again.

Murphy started gymnastics today, too.  It is his very first "fun" activity.  He clearly doesn't want to do anything sports-related - so I thought I could pass this off as not being a sport, but still giving him some exercise.  He seemed to really like it.

On Friday Harlie and Cooper will take gymnastics, too.  Me signing them up all started with Harlie's physical therapist recommending it for Harlie.  Since she has loose ligaments, we should try to compensate by building muscle strength (since you can't do anything about the ligaments).  For example, when she wants to go one direction, and I want her to come with me, I cannot pull her arm with any effort whatsoever.  It totally feels like I'm going to pull her arm right out of it's socket.  It's a really weird feeling.  And she said gymnastics would help with that.  When I was looking at the classes offered, I realized that the boys would probably really like it, too.  So, I signed them all up.  We'll see how it goes for this first session and then go from there.

Tomorrow is Therapy Day.  Harlie has speech therapy, feeding therapy and physical therapy.  Normally, this occurs on Thursdays, but since it is the first week of school, things got moved around a bit.

In Feeding Therapy, a psychologist will sit in on the session to observe Harlie's behavior.  It is atrocious.  I can't believe how this little girl can break an adult into pieces in a matter of a few minutes.  It is now a battle just to get the tray on the high chair.  And now that she's almost four, she knows how to get it off.  Really, we're at her mercy in so many respects.

And it's such a shame, too.  Even when resisting every bite - she ends up eating a good volume - tonight's battle ended with a 9.5 ounce feeding (which is great).  That is clearly the only thing that is keeping me going.

Well, that's it for now.  I must get to bed.  I have an early run in the morning - ugh - 5:30am!!!!  These school hours are killing my training time!

Thanks!
Christy

Happy Labor Day!

For several years, my Mom has been trying to get our family to go to a relative's Labor Day party in Northern Virginia.  Each year, we have all had other plans and couldn't make it work.  But, the party sounds like it is a lot of fun.  With many, many bushels of blue crabs, and other seafood, a lot of people having fun and lots of activities for kids.  

So, finally, we all make it work and we all go on our way.  My Mom and Dad were in one car.  My sister and her family in another car.  My older brother and his family in a car. And, of course, the five us in our car.  It was a two-hour drive and we did not want to be on I-95 on Labor Day, so my brother and us took back roads.  Curvy ones.  With lots of dips and hills.  Perfect for when you have to un-do your seatbelt and turn around to suction, or feed a little girl sitting in the back seat.  About a hundred times.  Ugh. It was so frustrating - exactly the OPPOSITE of a relaxing drive for the passenger (me).  I seriously thought I was going to hurl at one point. 

But, it was worth it for THIS party.  All I could think about was all that good food. Yummy blue crabs!!!  We could hardly wait!

As we got within a few minutes of arriving (after being in the car for TWO HOURS), I called my Mom, per her instructions.  I asked her what the bathroom situation was.  She said, "Well, there is a McDonald's and Burger King on the corner."  I said, "Huh?"  That's when she said through what I thought was the verge of crying, "I have bad news. There's no one here."  

Uh-oh.

The party was yesterday.  YESTERDAY!  

Nice.  

So, we all pulled in the McDonald's parking lot to try to accept this horrible news.  My sweet, loving, supportive, wonderful and very sad Mom was the last to get out of the car. Understandably so, of course.  As she felt VERY bad.  

Everyone was so hungry and disappointed, that we all ended up eating at freaking McDonald's of all places (my LEAST favorite fast food place of all time - unless it's breakfast, and then it isn't so bad).  We went from CRABS to McDonald's!  

Of course this McDonald's had a play area for kids.  Ew.  Somehow Cooper got ahead of me and ran into the room before me (some of his cousins were already sitting with food) and within seconds (literally) I looked at him and he was holding and eating a chicken nugget.  Hmmm.  I took the chicken nugget away from him and went to each cousin, asking if they gave him this chicken nugget.  Nope.  Not a one had nuggets.  

So, either he took it off the table from a family (unknown to us) who was sitting there or he found it on the floor.  

Nice.

So, in my Mom's despair (as she was surrounded by 15 people with very sad, unsatisfied looks on our faces as we ate McDonald's food) she called my younger brother (who couldn't join us on our fantastic road trip) to see if he could get a bushel of crabs in Richmond.  He could, so we all agreed to meet at my house for crabs, which made the day not a TOTAL loss.  

So, we all head out to get in our respective cars, when Harlie goes up the play thing and refuses to come down.  I am signing, "let's go, get in the car" and she just smiles at me all innocently from way up high.  

So, I sent Murphy up there to get her.  Silly me.  Of course that doesn't work.  Now I've got two kids up there that need to come down.  So, I had to go up there and get her.  It was not one of my best moments.  Those things just don't get enough air in there.  It smells.  Yuck.  

So, I sanitized all my kids (and myself, of course) and we piled in the car to head home.  

Here's Tom on the way back...

And the kids...

And Cooper singing...

And me...

And here's all of us at home, finally eating crabs.

We all agreed that Mom won't live this down for a very, very long time.  It will be added to the list of things that we give her a hard time for.  One day, I will have to write them down.  They are VERY, VERY funny.  And let's just say that this isn't the first time she's gotten the date of a party wrong - finding out too late, of course.  Funny stuff, especially when it's not you being made fun of.

So, a BIG day tomorrow!  THE FIRST DAY OF SCHOOL!!!  I'm not sure who's more excited, the kids or the parents.

Murphy starts First Grade.  The last time we went to Busch Gardens I put my arm around his shoulders on a ride and he said, "Mommy, you don't have to hold me."  Sadness!  When did he get so grown up?

Harlie goes back to her PEDD class (Preschool Education for the Developmentally Delayed).  I am supposed to have her there at 9:30am for her Hearing Impaired instruction, but since we just added it to her IEP (on Thursday at Open House) transportation isn't set up for the new pick-up time.  Normally the bus comes at 10:30 to have her at school by 11am, which is when her PEDD class starts.  But, I'm thinking about letting her miss the HI instruction tomorrow to let her ride the school bus, since it's the first day and all.  I just hate to have her miss out on that excitement.

We'll see...

I hope you all had a great Labor Day weekend!

Thanks,
Christy

Updates

So much to say, so little time...

Ear Issues

So, last Wednesday (the 25th) Harlie had an appointment with her audiologist for her regular testing (its been over three months since her last one).  I told her that we've been having some issues with her hearing aid squealing (feedback) at odd times, out of nowhere.  So, she looked in her ear and there is some wax blocking the canal.  She tested her and when she last tested at 2.6, she was .4 this time (my numbers might not be exact, but close enough).  Clearly, the blockage is affecting her hearing a bit.  So, she said that we needed to get in to see an ENT to try to clear it out.

Our goal was to get her a-okay in time for school, which starts Tuesday.  So, Ann helped me get an appointment with a local ENT (Harlie's ENT is in DC, and I really don't want to drive up there for this right now) and we went to see her this past Wednesday.

The ENT said that Harlie's ear tube has come out of her ear drum and, of course, wax has accumulated, blocking her ear canal.  This was Harlie's 3rd ear tube in less than 4 years.  Her DC ENT put it in in November of last year.  It is a T-tube, and is supposed to last longer than the normal tubes.  I asked the ENT why her tubes come out so quickly (none of them have lasted a year).  She said that she must have really thin ear drums and there just isn't enough "meat" to hold the tube in place.  It certainly isn't because she is growing (the normal reason why tubes come out).  Her ear canal is still super tiny, like a baby's.

So, we're putting drops in her ear to try to loosen up the wax in time for our next appointment - on Thursday.  The ENT will try to pull the tube and gunk out in the office.  If she can't, then that means Harlie will have to go to the OR (at some point in the near future), which I would rather avoid.  So, hopefully she can get it all out and get her hearing clearly again.

Nutrition Appointment

Last week (the 26th) Harlie had an appointment with the feeding clinic team.  Overall she is doing great gaining weight.  She weighs 31 pounds, 14 ounces (25th percentile) and she is 36.4 inches tall (3rd-10th percentile).  She gained over two pounds since her last appointment in May - and that includes having heart surgery.  Overall they said that she gained 178% of expected weight gain (so she gained almost twice as much as expected).  And I can see this growth/gain.  Shorts that she could wear at the beginning of summer, she can't get into now.  And I have never seen her outgrow something in one season.  In fact, at the beginning of this summer, she could still wear size 24-month shorts!

Here she is getting measured.  You can see that in order for her to stand straight, one leg has to be bent quite a bit.

And here she is with her feet even on the floor.

That's quite a difference.  And it's a reminder that I must call her orthopaedic surgeon for an appointment!  She wanted to see Harlie months ago.

Feeding Therapy

Feedings were going great until her heart surgery in July.  Once she got home and recovered enough to start oral feedings again, we have been going downhill in the behavior department.  She is eating "well" as far as volume goes - but it is a lot of hard, hard work!!!  And I really feel like I am reaching my breaking point.  I am so close to being ready to throwing in the towel on oral feedings.  I haven't been this "over it" in a very long time.  And if everything else was "normal" and I wasn't using my patience in every other department as well, I could deal with it okay.  But, my patience is already stretched to the limit.

Here's what I mean:

She used to tolerate her HME just fine and wore it all day, with no issues whatsoever.  Ever since her surgery, she takes it off all the time (the HME provides humidity and moisture to the air she breathes and when she doesn't wear it, her secretions get thick and forms mucus plugs - NOT good).  Another benefit to the HME is that when she coughs (this is gross, I know) her secretions go into the HME and not all over whatever or whoever is in front of her.  The HME "covers her cough", if you will.  Well, now she takes the HME off whenever she coughs - which is about a gazillion times a day.  I know this might seem strange - but I think kids with trachs cough a lot more than kids without trachs because that trach is in her airway.

Another negative to her taking the HME off all the time (especially when she coughs) is that she can accidentally decannulate herself (pull the trach out).  Which is exactly what happened on Tuesday afternoon as Brandy was walking out the door to go home.  Luckily she noticed that Harlie sounded "different" and looked closer to see what was going on.  I was on the computer, like any good mom should be.

Brandy told me that she was decannulated and I jumped up and tried to put it back in.  But, it wouldn't go, so I had to get the emergency kit from her diaper bag and start with a fresh trach.  Once Harlie realized what was going on, she was not cooperative in letting me put it back in.  So, Brandy had to hold her arms down while I put a new trach in.  Luckily, she appeared to be breathing okay, so we weren't as scared as we have been in the past.   We were still scared, just not as scared.

So, in summary - this HME non-tolerance crap she's pulling is causing major issues with plugging and decannulation - both things that make breathing difficult.  Whew!  It's a good thing it's not a big deal.  And it is a constant issue.  Truly - a constant issue.  A pull-your-hair-out-go-running-and-screaming-out-the-house kind of issue.  A think-of-a-million-other-forms-of-torture-you'd-rather-endure kind of issue.  Seriously.  I am not exaggerating.

She won't walk any distances - even the same distances she walked prior to surgery.  She really fights the stairs - both going up and coming down.  This produces an agonizing argument every morning and night.  This is one where I have pretty much given in and let her win.  It just isn't worth it to me.  That's not how I want to start off the day, or how I want to end it.  I know I will have to change this - but all in good time.

I know she is capable of potty training.  Okay, I believe she is capable.  But she is not willing.  And no matter how hard we work, if she doesn't want to be potty trained, then she won't be potty trained.  Again, this is a battle in which I surrendered.  We've been working on this for well over a year and I just don't have it in me anymore.  She will do it when she wants to and that's that.  Of course, that doesn't make accepting the situation any easier (on our part, I mean).  I still get my hopes up when we have a good day and they come crashing down when the next day is like the good day never happened.  It is very frustrating.

Communication suffered after surgery, as well.  She went several weeks where she pretty much refused to communicate in any way.  That has definitely improved - but not as good as it was prior to surgery.  The other night I was the most frustrated with her lack of communication skills than ever.  She wanted something from downstairs (as we were getting her ready for bed) and she wouldn't sign or use the device to tell me what she wanted.  For all I know she just wanted to be downstairs.  But, I really don't think that's likely, because she has never wanted to go back downstairs once we've gone up for the night.

So, then I thought she obviously doesn't know the sign for what she wanted or how to say it on the device.  I don't know.  In looking back maybe I should have taken her back downstairs to let her show me what she wanted.  I was thinking at the time that she was probably stalling and I was (quite frankly) super tired and I didn't want to carry her down and then have to carry her back up the stairs.  And she didn't appear to even be trying to "tell" me what she wanted.  And I didn't want to reward that kind of behavior.

Anyway, as you can probably see - there are only so many battles I can fight.

Back to our struggles during feedings... Allison (her therapist) said she is going to ask child psychology to sit in on our therapy sessions for a bit to see if she might have any ideas.  My main fear at this point is that we are making feeding a negative experience for her.   I can only imagine what it's like for her.  From her perspective, this is how I see it:

• She doesn't know or understand hunger - what it is or how to satisfy it.  
• She doesn't appear to be able to actually taste anything.  The only reaction we get from a food is in it's texture or thickness.  So there's no enjoyment there. 
• She has no interest or desire to eat or try what we are eating.  

So, to her - what's the point?  In this way, I am completely sympathetic.  I mean, how can I blame her?  Doesn't that just sound horrible?

And another thing... anytime you hear some "expert" talk about parenting, you hear "consistency is key."  Harlie has three nurses, two parents and several therapists that all have their own way in dealing with her.  We all have different expectations, demands and tolerances.  Consistency is not something Harlie gets to experience - and not for the lack of trying, either.

I am trying to believe that this is just a phase.  She's testing us and learning our/her limits.  If we can just persevere through this difficult phase, she will realize that it's less work to just eat the food without fighting so she can go do whatever she wants to do, sooner.  And if we could just teach her that communication will bring her power and control.  I think that would make such a big difference in her willingness and participation.  And maybe giving her more control in one area, will make her less likely to want it another area.

On a good note... we had open house for Murphy and Harlie's schools today.  Harlie will be in the same class she was in last year, with the same teacher (awesome Mrs. Katie) and the same students.  So, that will be good.

And she will get some good quality language development time with her hearing impaired teacher.  She will see her three times per week for an hour and a half in another classroom, before her class starts, for more direct instruction.  So, Monday, Tuesday and Wednesday she will go to school at 9:30am and will see her HI teacher until 11am, then she will go into class till 2pm.  On Thursday and Friday, her HI teacher will come into the classroom between 11am and 2pm for language development.  I'm hoping that her being in another classroom, with more direct instruction will really help her make some progress in communication.  We'll see...

Murphy seems pretty excited to start 1st grade.  His teacher seems nice and he has a few of his friends from Kindergarten in his class, so that's good.

I am feeling a little overwhelmed over what our schedule is going to be like beginning next week.  Once I have it all figured out (yeah, right) I will try to show you, so you know what I mean.

Okay, that's it for tonight.  It is late and tomorrow is another busy day.  Yay!

Thanks,
Christy