Marathon Training and Non-Hearing Terms

It's 4am and I can't sleep because I feel like crap.  I have a cold.  I like to consider myself more strong than weak, but colds kick my butt.  I'm thinking it's worse when I'm training for a marathon.  I'm tired from that already, so I don't have much left over to fight a sickness.

I felt a tinge of something Friday night.  On Saturday morning I woke up, met the group, and ran 18 miles.  Overall, I felt pretty good.  The course was hillier than I would have liked (but aren't they all?).  Then we went and got some breakfast.  Then I came home and weeded and planted the flower bed around the mailbox.  And that hurt.  My legs were screaming by then.

That night we went for a walk around the neighborhood with the kids.  I don't know why we don't do that more often.  The kids love it and it wears them out.  A win/win!  Harlie even wanted to walk more than usual.  We are trying to work on her walking endurance (we just started physical therapy again finally!).  And when we got the kids to bed and I sat down, it (the cold) hit me.

I have no energy to do anything.  And all I can think about is how much I'm not getting done or doing that I need to do.  How in the world am I going to get miles in this week?  Luckily, it's a recovery week, so we'll run only 12 miles on Saturday.  So, really, of all times to get sick, this is the best time.  This coming Saturday is 12 miles, the following is our longest before the marathon - 20 miles.  Then two weeks of tapering miles.  Then on November 12th, the marathon - all 26.2 miles of it.  Kinda hard to think about, really.

So, I think this will be my last marathon for a while.  I've already decided I'm not going to do it again next year.  This week alone is a perfect example of why running a marathon is too much for me.  For one, I'm sick.  Two, we have an appointment in Norfolk today to see Harlie's plastic surgeon.  Funny story... I told my night nurse that we were going to see Harlie's plastic surgeon tomorrow and she asked me what for, eye, ear?  Ha!  It's pretty comical that I have to be more specific when I say plastic surgeon.    And no, not eye or ear... jaw.  I hope Harlie has my sense of humor...

Anyway, so we'll be gone the whole day to go to Norfolk (and she'll miss school, of course).  And I can't do my long mid-week runs on Wednesdays because I'll be gone too long and will be too far from the gym to leave Cooper there while I run.  I think I have to run 9 this week.  Which means I'll have to do them on Thursday, rest Friday, run Saturday.  According to our training schedule, we're supposed to run four days a week.  I've already cut that back to three days.  And this week, I'll only run twice, and that includes my long run.  And that's if I can, considering this cold.

I'm over the pressure of having to get these runs in.  Five months of that is too much for me now.  And it would be different if I thought that running like this gave me more energy.  But the fact of the matter is that once you get up into this kind of mileage, the training drains my energy and I have very little left for Tom and the kids.  So, I just need to hang on for five more weeks.  And then it will be over.

Another reason I couldn't sleep is because I saw something on a signing website that's bothering me.  The website said that the term "hearing impaired" is considered offensive to the deaf and hard of hearing community.  And that they prefer those terms - deaf and/or hard of hearing - instead.

Personally, I've always used the term hearing impaired.  And it sounds like that's what our county uses because they call it the hearing impaired program and Harlie has a hearing impaired teacher.  And I feel like it accurately describes her hearing loss.  Here is the definition for impaired:

1. Diminished, damaged, or weakened: an impaired sense of smell.

2. Functioning poorly or incompetently: a driver so tired as to be impaired.

3. Having a physical or mental disability: an impaired child in need of special assistance.

n. (used with a pl. verb)

People who have a physical or mental disability considered as a group: a swimming class for the physically impaired.

So, what's the problem?  I see nothing offensive in that definition.  Maybe I'm desensitized because Harlie has so many issues with so many different body parts and functions.  I don't know.  But, I don't get it.

I was so bothered by it, that after I initially tried to go to sleep, I got back up to google why the term hearing impaired was offensive.  And here is what I found:

Hearing-impaired – This term was at one time preferred, largely because it was viewed as politically correct.  To declare oneself or another person as deaf or blind, for example, was considered somewhat bold, rude, or impolite.  At that time, it was thought better to use the word “impaired” along with “visually,” “hearing,” “mobility,” and so on.  “Hearing-impaired” was a well-meaning term that is not accepted or used by many deaf and hard of hearing people.

For many people, the words “deaf” and “hard of hearing” are not negative.  Instead, the term “hearing-impaired” is viewed as negative.  The term focuses on what people can’t do.  It establishes the standard as “hearing” and anything different as “impaired,” or substandard, hindered, or damaged.  It implies that something is not as it should be and ought to be fixed if possible.  To be fair, this is probably not what people intended to convey by the term “hearing impaired.” 

Every individual is unique, but there is one thing we all have in common:  we all want to be treated with respect.  To the best of our own unique abilities, we have families, friends, communities, and lives that are just as fulfilling as anyone else.  We may be different, but we are not less. 

I just don't get it.  This is the part that stands out most for me.

It establishes the standard as “hearing” and anything different as “impaired,” or substandard, hindered, or damaged.  It implies that something is not as it should be and ought to be fixed if possible.  

Who put the "standard" part in there?  Who says hearing is standard, and not hearing means substandard?  That's negative.  Not the use of the word impaired.  And her heart doesn't function like it should.  Should we not have fixed that?  And no, her hearing isn't as it should be because your ears are made for hearing.  And she's missing an entire ear and the other one is damaged, diminished or weakened.  There.  I said it.  And to try to fix that, we got her a hearing aid.  And we're going to get her a BAHA if that helps her hear better, too!

In another paragraph, it read that the term "hearing loss" isn't liked either because for people born deaf, they never had hearing, so they didn't lose it.

Look, let's face it.  Harlie was born with many birth defects.  I suppose the word defect is probably offensive, too.  The list of offensive terms is getting ridiculous.  Other words that offend some people are special (when referring to children and their needs), and normal (what's normal, after all?).  I'm not bothered by any of them.

Harlie is special.  Her body functions differently than the norm, differently than it is supposed to.  And she has special needs - a nurse and a tube in her throat in order to breathe.

I'm getting off subject.  Before Harlie, I had never met a person who was deaf, or hard of hearing.  Which, by the way, I don't like "hard of hearing".  To me, that sounds like a volume issue.  Anyway, since Harlie, of course, I've met some signing people (all hearing) and I had the pleasure of meeting a deaf couple this summer.  I signed a little - an interpreter was there and she introduced us.  I was so proud of the signs that I knew.  And I was so proud that out of all the people that were there, I was one who knew some signs.  Then I heard that there is a sign for "stupid hearing people".  Now that's offensive.  But, okay, fine.  I felt pretty darn stupid when I was trying to sign with that couple.  But I would have felt the same kind of stupid if I were trying to talk to someone who speaks spanish.  I don't know that language, either.  Doesn't mean I'm not capable of learning, though.  But, whatever.

I think what bothers me most is that I've been using a term for years - one that I am completely comfortable with - that's considered offensive by a whole community.  I don't want to offend anyone.  But I feel this need to help other people understand Harlie's issues.  And I feel that hearing impaired accurately describes her hearing loss.  And it is a loss.  I don't care if she was born that way or not.  And her life is more difficult because of that loss.  Trust me.  I have seen her struggle in class.  The loss of normal hearing is having a profound impact on what and how she learns and how she acts.

And what kind of mother would I be if I didn't try to do everything in my power to help her???  I keep going back to that sentence -  It implies that something is not as it should be and ought to be fixed if possible.

Her heart.
Her jaw.
Her right lung.
Her butt.
Her spine.
Her inability to eat.
And her hearing.

All things that are not as they should be and ought to be fixed if possible.

She is not substandard.  And she is not less of a person because of her losses.  I don't see how anyone could think those things - about anyone.  And I don't see how the term hearing impaired implies any of those things at all.

So, now I'm left wondering what I do from here?  Do I continue to use a term that's known as offensive to people that I don't even know?  Or do I start using Hard of Hearing (which I don't like)?  And frankly, I'm pissed that I even have to think about this.  Like I don't have enough of my mind!  Sadly, it seems that a website that is meant to offer support, only added to my stress and worries.  I'm sticking with what I'm comfortable with for now.  Harlie is hearing impaired and I think she is an extraordinary little girl.

Thanks,
Christy

Harlie's Book

Finally!!!

I took pictures of all the pages of Harlie's book.  It is soft-bound and it has really done wonders.  I have received nothing but positive feedback from all the parents I've met so far, and teachers.  Each one of Harlie's classmates received their own book.  Then they passed one around to each kindergarten class.  And they put one in the library, too.  The teachers that I've spoken to so far have said they really enjoyed it and I really think it has made a huge impact on the way Harlie has been treated so far.  The kids have really been good to her and we are so, so thankful!!!

So, here it is (click on the picture to see it up close)...

I have to give the most credit to Cheryl Sale.  She actually wrote it - when I give information about Harlie, I tend to be a bit too medical.  But she really made it understandable for kids.  I had to fight the urge to say "She's been through 20+ surgeries and over a year of hospital stays - JUST HAVE A HEART WILL YA?!"

This book has been an awesome tool, so far.  And I highly recommend something like it for any kid who has some challenges.

Overall, I think kindergarten is great for her.  There are some challenges - for her and for me.  I never realized how often food is used as a motivator and/or reward for work.  I guess that probably contributed to the two full years it took to potty train her!  No M&Ms for her - just praise.  And the food rewards are just constant reminders of something that's different and difficult about her.   I hope that in time, the constant food around her and the excitement from the kids about getting food will make a positive impact on her.

Kindergarten is hard on me emotionally.  She is VERY tiny.  She's a good six inches shorter than everyone else in her class (or in the entire grade for that matter).  She is VERY slow - physically, I mean.  If the kids behind her in line don't pass her - there is a huge gap in the line.  And it's not just that she's slow.  She doesn't move the same way.  Her movements are slower and not as confident.

The other day she was waiting to go to the potty.  But when one kid would come out, by the time she got to her feet another kid would run right in front of her and go in.  I was with her that day because we didn't have a nurse.  It's just hard for a mom to see stuff like that.  And if she could talk - she would say, "hey, it's MY turn" which, she can say with her device but by the time she hit the buttons, they would already be in there and they wouldn't hear the deivce anyway.

They were working on patterns the other day using Goldfish - Cheddar and Pretzel ones.  The class chanted, "Cheddar, Cheddar, Pretzel" and Harlie didn't, of course.  I showed her the buttons on the device, but you have to press three buttons to say cheddar or pretzel.  So, she wouldn't be able to keep up with them anyway.  

And I guess it's because of her hearing impairment???  But she really doesn't pay attention.  She won't maintain eye contact when learning something new - especially if it's not something she's interested in.  I was told that when a young hearing impaired (HI) child listens to someone talk - if they miss one word of the sentence, they don't understand the whole sentence.  You need to have a good base of vocabulary in order to fill in the blanks.  And a young HI child doesn't have that language base yet.  So, imagine how easy it would be to lose interest when you don't understand most of what's being said.

I can't help but wonder if she might be ADD, too, since I've heard that siblings of a child with ADD are like 80% more likely to be ADD, too.  Or something like that.  God help us if she's ADD and needs meds for it - because eating is already a GIGANTIC challenge with her.  Add the appetite suppressant medication to the situation and I might just give up for real!

Homework is challenging, too.  She loses interest very fast.  Last night we worked on naming five things she can hear.  I know she can hear the telephone ringing, because when it does she signs and says, "telephone!"  But, even after we went through a few things, I have NO idea if she understood what we were doing.  She certainly didn't offer up anything she could hear.

It is both frustrating and worrisome.  I know she's smart.  I know she figures things out and remembers really well - but if she doesn't cooperate and show us (and her educators), what's going to happen to her???

But, this is partly why we put her in kindergarten this year.  Hopefully a run through once, and another year of maturity and knowledge, will greatly improve her attention span and willingness to cooperate when it comes to the "work" of school.

The best thing about kindergarten so far is her ability to socialize with her peers.  A couple of weeks ago I took her to see her local ENT for an ear issue (another blog post, I hope!).  While we were in the waiting room, another girl came in and Harlie tapped her on the shoulder and waved and said "Hi!"  I almost burst into tears right there!  That is the FIRST time she's ever initiated contact with a child she didn't know.  Before school, she would have just turned around and ignored her.  I was so happy!  What a positive impact kindergarten has had on her already!!!

Okay, I have to run.  I really hope I'll update soon.  I still have so much to share!!!
Thanks,
Christy

Transitions and Kindergarten Screening

It is now Monday night.  I wrote this post on Sunday night.  I was a little upset and I thought about deleting it - but these feelings were real at the time and it just illustrates some of the challenges with having a special needs child.  So, I'm posting it - with today's update at the end.

*****

With just two weeks to go until school starts - there's a lot going on.  I'm pretty upset right now, so I'll try to be as understandable as possible.

Change in School Location
Last year (and the year before that) Harlie went to a different school than where she will go to kindergarten.  That school used to hold the Hearing Impaired (HI) program.  But, the county is trying to establish "feeder patterns" in the special education areas so that kids in the same program stay together as they age.  And this is the first year, so you know how that could go.

Sounds like a good concept.  But, I have to admit that I was sad.  I liked where she was, and she seemed comfortable there.  People knew her.  And who actually likes change anyway?  Especially when it comes to your special needs kid?  But, everyone really talked up the principal at the new school and said she had a special education background, so it was a good fit.

We met the principal and toured the school along with a group of HI kids who would be transitioning to this new location as well.  There's only a handful.  And only a total of four starting kindergarten (two who speak, so they don't need interpreters/instructional aides) and the other two is Harlie and a classmate of hers from the previous school (who do not speak and require an interpreter/instructional aide).  All these kids also see a HI teacher (in addition to their regular teacher) during the day as well.

Well, just a few weeks ago I heard that the principal has left the school.  And she was only there for two years.  And the one before her was there for a short time as well.  So, now I know that the school has been through a lot of change in the past few years.  And they have not hired her replacement.  So, the school has NO principal.  And school starts in two weeks.

At the ice cream social on Friday, the resource teacher spoke in place of the principal.  It appears that there is no assistant principal, so she will be filling in as the principal until one is hired.  So, you know that she will be stretched pretty thin.

Staff Changes
Harlie did not need an interpreter/instructional aide last year since she was in preschool (she will require one now, though).  But she did get HI instruction from an HI teacher.  And she is awesome and is so good with Harlie.  She challenges Harlie in a way I cannot.  I'm her mother, after all.  So, I have been very thankful for this HI teacher.  She is also the one that wrote this book that I haven't been able to show you yet (as soon as I get the books, I will show you).

During our last IEP meeting at the end of the school year, the county's audiologist was in attendance.  I asked her if Harlie would keep the same HI teacher at the new school.  She wouldn't tell me then because she didn't have all the assignments done.

During the summer, I found out that we would have the same HI teacher!  YAY!  I was so relieved because I really feel that so much of Harlie's success/failure is dependent on the person in this position.  I also found out the county's audiologist has since retired.  And they are looking to fill her position.

I also learned that they have not filled the interpreter/instructional aide position.  At least, the last I heard they had not.  And I really want to meet this person and talk to them before school starts.  Now that we are going headstrong with the communication device, this person needs to be aware and on board - and educated on the device so she can help Harlie use it during the day.  This person will be beside Harlie most of the day and her success with the device is dependent on this person helping her with it at school.

But that person doesn't exist yet.  And there's two weeks before school starts.  What if they can't find someone qualified?  Do they hire anyone just to get a body in there?

Can you tell I'm slightly stressed about it?

And then tonight, I get an e-mail from her HI teacher telling me that she doesn't think she's going to be at Harlie's school after all.  And she doesn't know who will be assigned to Harlie yet.  What?!?!  I can't tell you how much I HATE to lose her support.  She has been awesome with Harlie and I really like her.  It truly saddens me to lose her!!!

I can't help but feel that everywhere people are going is more important than the places they're leaving.  And I hate to sound negative, but I don't really see any evidence of an existing HI program anymore.  And if there's no HI staff there - and there's no HI staff at Harlie's home school just a few houses down my street - then why don't I just send her to our home school with her brother?

I'm really trying hard not to freak out right now.

But, I'm already doubting "our" decision to send her to kindergarten.  There just seems to be too much transition and instability right now.  Are they scrambling to fill these positions and will the quality of the person be sacrificed for a warm body?  Ultimately Harlie will suffer if the county doesn't figure things out.

And who the heck do I talk to about all this?  Who's my point of contact?  And if I don't send her to kindergarten where would I send her?

The only person left for me to talk to about this would be Harlie's kindergarten teacher.  And I'm seeing her tomorrow - but only for a pre-screening with Harlie (something she does for all the students) and I think it's only a 15 minute slot.  Certainly no time for discussing all this stuff.

You know, I'm just sad and scared.  Everyone I was trusting to help Harlie be all she could be is gone.  And can I just say how FREAKING hard and scary it is to have to COUNT on other people to help my child succeed?  I am counting on the county to provide HI support so Harlie can learn in a way that works with her hearing impairment.  The gap between kids who are hearing and those who are impaired only widens with each passing year - unless you intensify the support as soon as possible.

At this current time I do not feel that the support is intensified.

Nursing Changes
And as if that isn't enough change and instability, Brandy (Harlie's nurse who will be going to school with Harlie most) is pregnant.  YAY for her!  She is due on Thanksgiving and she's having a girl.  At the beginning of her pregnancy, I joked that I thought Harlie needed a little brother or sister (you know, since Brandy is family now).  Anyway, while this is wonderful news for her and her husband, it does impact us a bit.  Right now the plan is that she will return after a maternity leave.  And then I will keep her baby during the day, so she can go with Harlie to school.

But in her absence, we need a nurse to go with Harlie to school.  And this scares the crap out of me.  I haven't had to find a nurse in over four years!!!  I admit - we are spoiled in this area.  We have been truly blessed and lucky.   But now I have to find someone.  That is not an easy task.  And it's complicated by the fact that I really don't know when we'll need that person to start (since we don't know when Brandy will have the baby).  And if I interview someone now - they could be assigned to another patient and then not want to leave that assignment to work with Harlie, especially since it wouldn't be a permanent position (at least that's the plan).  So, I'm going to have to wait until much closer to November till I can really start looking seriously.

And I also know that things don't always go according to plan.  And Brandy could have this little girl and decide that maybe she doesn't want to come back to work.  And while I sincerely hope that doesn't happen - I would totally understand and respect her decision.

So, needless to say, I'm stressed.  More so than I've felt in a really, really long time.  BUT - I am trying to keep things in check - because I am really hoping that things will work out.  Trying to have faith in the county since they have done well by us so far.  Keeping my fingers crossed that these changes will be good when I look back on them later.

Monday Night Update

We had the screening with Harlie's kindergarten teacher today.  So, a lot has "changed" since my post from last night.

First - her HI teacher was there and Harlie's main teacher must have realized it would take longer, so we had a longer time slot.  And we were able to talk about a lot of this stuff.

Harlie now has an interpreter/instructional aide - and she is someone who has worked with Harlie in the past at her last school.  So, she's not a new hire.  I guess they had to do a lot of shifting around since the head of the department retired.

And she has an HI teacher, and she said that she is wonderful and will be great with Harlie.

So, it appears that maybe I let my fears get the best of me last night and I don't need to do anything drastic.  And there is an HI program, they were just figuring out all the changes.  I am normally so much calmer than I was last night.  But, I have to say that my emotions are all over the place right now.  At this point I just need school to start already so I can get over this "hump."

The screening itself didn't go so well.  She wouldn't write her name, or answer questions about what shape was what and barely did the abc's in sign.  I should have realized it was doomed from the start...

Both Harlie and Cooper have been fighting some sickness for a couple of weeks.  Harlie actually started to get sick right before Tom's reunion and our trip out of town (which I still haven't written about or posted pictures - soon).  Harlie went on antibiotics and got better.  A few days after the last dose, she started to get sick again.  And Cooper's been coughing something terrible for the whole time, too.

They were both at their worst on Sunday (Sunday night was AWFUL and I only got 3 hours of sleep), so first thing Monday morning, I called the pediatrician.  They were booked, but squeezed us in at 9:40.  We had an appointment with the supply company (who sends a respiratory therapist to our house once a month to see Harlie and check her equipment) at 9:30.  And we had to be at Harlie's school at 11am.

So, I called the supply company and told the person who answered that I needed to reschedule our morning appointment for the day.  She transferred me to someone's voicemail.  I left a detailed message to NOT send the RT at 9:30.

As we were getting in the car to go to the doctor's appointment, my doorbell rings and it is the RT and a trainee from the supply company.  Of course, they didn't get my message.  When I told the RT, she said that the person I left the message with is on vacation this week.  Seriously?  That moron sent me to a person's voicemail who is on vacation to deal with rescheduling an appointment for an hour away?  Geez.  And it didn't help that his voicemail message did NOT say he was out for the week.  Grrrr!!!!

I told her we were leaving, she could check Harlie really quick while I got Cooper in the car and then she would have to check the equipment after we left.

Oh, and I forgot to mention that Murphy had a friend sleep over Sunday night and they were running around.  And my niece (thank God for Maggie!) came to stay with the boys while Brandy and I took Harlie and Cooper to the doc.

Oh, and I couldn't find one of my flip flops.  And that really ticked me off because I am CONSTANTLY picking up everyone else's freaking shoes and putting them away (including my own, of course) and now it's MY damn shoe that's gone missing.  Where's the justice I ask???

So, I run and put Cooper in the car and of course they parked in the driveway.  Behind me.  So I have to go tell the RT to move it.  Seriously - the house was CRAZY and this poor new trainee was just looking around.  The RT said that she warned the new girl that it was organized chaos.  I wish I could agree with that.

Luckily this RT has known us for a long time and is really nice (she's been coming since Harlie was a wee babe) and she was fine with staying after we left to do the equipment check.  And while I was running around wrestling Cooper to put his shoes on and continuing to look for mine - I told her to please check Harlie's pulse ox cord which is fraying and probably needs to be replaced.

We finally get in the car at 9:38 - and there is NO way we are going to be at the doc's office in two minutes.  So, we're late.  Luckily this doc's office is awesome and goes out of their way for us so they were very understanding.

By the time we get back into a room it is 10am and it doesn't look like we're going to be on time for the screening at 11am.  So, I ask our nurse if there is any way possible to get us out in time.  Which I feel awful asking for since I was LATE.

So, doc looks in Harlie's ear - no big deal.  But as soon as she sits up blood is pouring from her ear.  This is the second time that's happened after just looking in her ear.  I mean, I get that she bleeds easily (since she's on aspirin daily, which is a blood thinner) but what is causing the bleeding?  He said he didn't see anything in there and he didn't feel like he scraped her or anything.

So, we wipe her off and with four prescriptions in hand, go running out the door.

We rush home, drop Cooper off with Maggie and the boys and rush to the screening.  We were about 10 minutes late for that.  I take a deep breath and wait for her teacher.  I turn around and look at Harlie and her whole right side of her face is covered in blood.  Nice.  She continued to bleed for an hour and a half!  Which means that her canal was full of blood - and she appeared to not be able to hear a damn thing.

Perfect!  UGH!!!!

Which is why the screening didn't go so well.  Oh, and she's sick.  And her tummy was upset and she had to go potty several times.  Those things didn't help.

And she was acting super shy with her teacher.  Which I totally understand.  There was a sheet and it had a Name: __________ slot and then some shapes and then the alphabet.  She saw the alphabet and when we asked her to write her name on the line, she started to write the alphabet on the line.

Then when she was asked "which one is the square" she pointed to the circle.  Now - I know how parents can be - but I PROMISE you - she knows her shapes!!!

Her teacher had her move next to her thinking that might help.  And when she pointed to a shape and said "what is this" Harlie signed square - but did it under the table.  Luckily this teacher is sharp and saw it and told us that she thought she signed it (she doesn't know sign - but has ordered a bunch of signing materials for the class and seems really excited about learning it).

Then, when Harlie signed the alphabet (the letters were not in order) she kept her hand on the table and barely moved her fingers.  It was as if she were whispering!!!  But in sign!!!  It was so interesting to watch!  And incredibly frustrating!!!

Luckily her HI teacher was there and she told the teacher that she knew that Harlie knows this stuff.  The teacher said that this behavior is completely normal - and I shouldn't worry.

Okay.  So, that was that.  It was noon and Brandy and I were pooped!  It was a crazy morning.  Then I took Murphy's friend home, fed Harlie, Brandy and I had lunch, and then I made some phone calls.  I tried to get an appointment with a local ENT to check out this bleeding ear situation.  But her next available appointment isn't until November 9th.  Grrrr.  So, I e-mailed her ENT in DC to ask him what he thinks about it.  I am just trying to avoid going there (DC) because Harlie would have to miss a whole day of school.  So, we'll see what he says and I'll go from there.

Tomorrow we are going to Northern Virginia for Harlie's appointment with her surgeon to see if she can stop wearing that back brace and resume normal activity.  My fingers are crossed!!!

Whew!  This has been a very long post!!!  If you're still reading this - you are a good person.

Thank you!
~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

Insurance and Hearing Test

I hardly talk about insurance, as I try not to think about it myself. Although that is difficult when I receive several Explanation of Benefits (EOBs) every single day. Literally, I receive anywhere from one to five EOBs each day. I just open them and put them in a notebook. Until that book becomes too heavy, then I archive the oldest ones, and start again. It's really quite ridiculous.

Today I received something a little a different. The letter says:

You are receiving this letter because the claim for the medical services listed above (claim number) was submitted to (Insurance Company) with a diagnosis for a type of treatment frequently found to be related to an accident or other trauma.

So, I think to myself, "What in the world are they referring to?" I look and it says "Children's Hospital".

Hmm, I'm sorry, but you're going to have to be more specific.

I can only chuckle at the fact that when I get a letter like that, that I have NO idea what they are referring to. Yes, there have been that many procedures, surgeries, and appointments. And it doesn't help that we frequent THREE different children's hospitals.

So, yes, you are going to have to be more specific.

After closer examination it says it's from Virginia Subrogation Services. I looked up "subrogation" on the internet and got this definition.

Then I said, "Huh?"

I searched again and found this explanation, which makes a lot more sense:

Suppose you’re in a car accident and it is clearly not your fault. Your car is wrecked and your neck and back have been injured. You are covered for both the damage to your car and your personal injuries, and so you call your insurance company and they pay all of your expenses relating to the accident. Later, your insurance company, realizing that the other party at fault also has insurance that will cover the damages, seeks out reimbursement from that insurance company since its insured was actually at fault for the accident. This is called subrogation.

Hmmmm.

Guess I'll be calling them soon. You know how I am about making commitments. Besides, it says I have 25 days to respond!

Ahhh, life with a medically fragile child is never dull.

On another subject, Harlie had another appointment for her hearing aid today. It was her first one since the beginning of February.

She was tested in a sound booth. She sat in my lap and played with some toys on a table in front of us. Ann would speak to Harlie and the sound came from the speaker on Harlie's right side (the side that her hearing aid is in). She would start at a low volume and would get progressively louder until Harlie looked in the speaker's direction.

Even though I perfectly know that she is hearing impaired, it STILL felt weird to hear things that she clearly, could not. Ann spoke to her, asked her questions and made funny noises all at different volumes. Then she played a static kind of sound or a shhhh kind of sound.

Ann said that she did really well. Although Harlie had enough after several minutes and signed "all done" and got down from my lap and that was that. There was no chance of getting anymore from her.

The results show that her hearing is definitely improved with her hearing aid. Which is pretty obvious in our day-to-day life (yay!). Ann also said that Harlie seemed very different than she has ever seen her (signing more and making more sounds). And we all couldn't agree more. Harlie is a completely different little girl than she has been since her jaw surgery in mid-December. Ever since mid-February when she got those wires out (and treatment for the bone infection began) she is so much happier and more cooperative. She must have been so uncomfortable for those months she was wired and infected. If only she could tell me when she's hurting!!!

We will go back in three weeks. We might have to take another mold of her ear. While she wears her aid all her waking hours now, it falls out a lot. Ann said that she has a VERY tiny ear canal. Like the size of an infant's ear canal. Still! And I've heard this from her ENT, as well. It really doesn't seem to have grown much, if at all, since her birth. And it's information like this that makes me close my eyes, shake my head and wonder when this is going to bite her in the butt. Because I know it will. It will have some adverse affect on her. Her jaw didn't grow right and is too small. She's had two jaw surgeries, and her jaw is still too small. We need her bone to grow. GROW! And the problem areas in her jaw and her ear canal are right next to each other. That area just doesn't want to grow!

Well, tomorrow we are headed back to Norfolk for her weekly appointment with Infectious Diseases. I'm anxious to see if she handles it any better this week. I'll certainly let you know!

Thanks,
Christy

We have a Plan!

I am so excited! We had a GREAT meeting today. I feel so lucky to have had such a good team. Everyone was so thorough in making Harlie's goals and plan for her education.

She was found eligible for preschool special education through the county (along with continued speech therapy and some physical therapy). Woohoo!

In order to get her the services she needs, a "label" is required. I know this is a sore subject in the special needs community - a lot of parents don't like labels. But I understand the need for them. And it's not like the label can't be changed if the child's needs change. And to me, if the label gets my child what she needs to have the best chance at success, then label away I say!

So, her label is Other Health Impairment. They didn't want to put her under Developmental Delay because they just didn't think that label fit her properly. They said that she's only delayed because of her medical issues (she's spent a lot of time in the hospital - cumulatively about 6 months total) and the chain reactions they have caused. Also, you age out of Developmental Delay at 6 years old. Whereas Other Health Impairment can stay with her as long as she needs services. Makes sense to me.

I just want to highlight something from the meeting. Her speech therapist had to write down Harlie's strengths. She asked, "how can I say stubborn as a strength?" And this is what she came up with:

Harlie is an enthusiastic, social, strong-willed child.

Love it!

Anyway, to get to the exciting part...

They recommended a special education preschool class at an elementary school about 15 minutes from our house. They also recommended that she attend every day, Monday through Friday, from 11am to 2pm. They will provide transportation. So a bus will come to our house to pick her and Brandy up (or Jennifer depending on who is working, or myself for that matter) and they will drop them off back at our house after school.

The class is a small class (but I can't remember right now how many kids are in it) and there is one other little girl who is also hearing impaired. They said that she has started to learn sign as well. I think if I see the two of them signing to each other I will totally melt! There is the teacher and a signing adult in the class.

She will also continue to receive speech therapy twice per week, during school hours. And she will get some physical therapy as well.

And all this structure and education will begin on TUESDAY!!!! Can you believe it??? TUESDAY!!!!

It will take a few weeks to get the transportation set up, so until that happens, I will have to take them and pick them up every day.

Now a quick story about the teacher. My friend Donna's daughter (Alex) just turned 8 in November. She has Angelman Syndrome and receives special education (her blog is on my list to the left). And her teacher when she was in preschool is the same one that will teach Harlie! We both went to Alex's birthday party a few months ago and I got to meet her and loved her! It is obvious that she really cares about the kids that she teaches. I feel so lucky that it worked out the way it did! When they told me that she would be in Katie's class I was thrilled!

The team put a review date to this IEP (Individualized Education Plan) of June 17, 2010, which is the last day of school. They want to review her case again at that time to decide if she needs to attend the extended year program, which will mean she would continue to go to preschool in the summer.

I really can't say enough good things about Harlie's team and the meeting today. I really felt like it was such an energetic group who were all excited about putting Harlie in a position to learn and grow. The meeting took over two hours. And all the excitement of the day has left me feeling completely drained. I'm amazed at the amount of energy it takes to be Harlie's mom! Honestly, I am pooped!!!

Now the challenge (yes, the challenge as if there's only one!) is going to be figuring out how I'm going to manage my day and her additional private therapies (speech and feeding) in coordination with her school schedule. Especially with me having to take them and pick them up every day for the next couple of weeks.

Well, before I go I just have to share a funny Murphy story. Some of you might remember this post from a few months back when I talked about Murphy and T, a girl.

Well, I saw T's mom at the gym this morning and she asked me if it would be okay if Murphy came down to play after school. Today was T's birthday and she was having some friends over. I said Murphy would love to. So, I pick him up from school and before he even says hello to me he exclaims, "I'm going to T's house to play!" I asked him how he knew and he said that T's mom came to have lunch with them today and she told him then. How cute. So, we went to get in the car and as he was getting in he said, "No time for gum, Mommy, I'm too excited!" Um, okay. Didn't ask him if he wanted any gum, but alright.

So we go home for a quick snack before heading down the street to T's house and he says, "Mommy I didn't chase any girls on the playground today. My chasing girls days are over."

Wow. He's only FIVE!!!!

More later! Thanks for reading!
~Christy