An Update - Finally!

It's hard to believe it's been almost two weeks since my last blog post!  I wish I could say it was because I had nothing to write about.  But, I have plenty of subject material.  Just not enough time.

Some "quick" updates (is that even possible for me?!):

Last Day of School - June 15

Our pool has a party for the last day of school.  It was super crowded.  But, it was a ton of fun.  My friend Lynda got there before we did, so she scored us some good chairs.

They are really happy, I don't know why they can't show it in a photo!

Have float, will get in the water.

They are really starting to look alike.

My goofy girl!  I guess since she can't dive for those rings,
she'll do something else with them.

They like to play outside the pool as much as inside the pool.

Murphy with Jessica and Samantha (twin sisters and
Lynda's girls).

How can I carry this big gun and my float?

I got this.

I took Kayla with us to the pool (she's Jordan's (my niece) roommate at Virginia Tech).  I just don't feel very comfortable taking all three to the pool by myself.  She was awesome and a huge help!  Thanks, Kayla!

Kayla and Harlie

The Pool Incident

Unfortunately, I don't believe anything has been done about the incident on the 16th.  I'm sure it's partly because I have not been "loud" enough.  Ugh.  That's just not in my nature.  And I've had very mixed reactions about this story.  Some people barely have a reaction at all - Cooper's fine after all, so what's the big deal?  Some have been just as upset as I.


I don't take any luck for granted.  I haven't done that in the last six years.  I know good luck/blessing when I see it and am on the receiving end of it and I do not let it go unappreciated.  We got lucky that day.  And I know how easily it could have gone horribly wrong.  And it happened on MY watch (and the lifeguard's).  He didn't want to be in the water.  So, when I would have looked up and didn't see him, I would have scanned the outside of the pool - the walking area all around it - to see where he went.  Did he go to the potty?  Did he go to the volleyball area to play in the sand?  How long would I have looked before I thought to look into the pool?  One minute?  Two?  He wasn't splashing (you know that drowning is very quiet, right?).    Okay, so now that this has happened, I will probably look in the pool, first.  

But still, I must say that I'm disappointed in the pool's management's handling of the situation.  I have heard that the pool has had issues in the past with the child that pushed Cooper into the water.  And as far as I know, they never reached the child's parents to inform them of his behavior that day.  I would think if you can't reach them over the phone, a letter should be sent.  In fact, I would think they would want that kind of thing in writing anyway.  I've also heard that the board met about this incident, but I never heard anything from them.

At this point, I'm afraid any kind of discipline just wouldn't make sense to him.  It's been almost two weeks already.

And I can't help but think that's absolutely ridiculous.  How can that be tolerated/allowed? Isn't that a major liability for a pool?  Don't they want that child supervised more closely when he's there?  How can they be okay with his parents NOT knowing?!  If my child did something that dangerous you can bet I'd want to know about it.  And if I found out that management knew and didn't tell me, I'd be furious!  

I just don't get it.

Swim Team

Speaking of the pool... Murphy is on the swim team again this year.  Last year was a huge struggle.  We pretty much forced him to do it.  He was not a fan of practice and he was terrified of the swim meets.  He's not a competitive child and when he heard the word "race" he panicked.  He also wasn't confident in his ability to swim 25 meters.  So, he would touch the rope - even though he didn't really need to, which disqualified him.  I think out of six meets last summer, he DQ'd the first four meets.

All we want from this experience is for him to build his confidence, make friends and have fun.  And we are so thankful that all of that is happening this year!  There's no touching the rope this year.  And no tears - and no anxiety.  He likes to go to practice and the meets.  So we are happy about that.  He has three more meets left - and now we are working on him making goals for himself.  So, we'll see how that goes.

The only negative to swim team is the daily swim practice.  It is killing my workouts/runs.  And that is a real bummer.

Harlie's Eye Appointment

So, back in this post I talked about some appointments I needed to make in preparation for Boston's pre-ops in July.  One was to talk to her eye doctor here.  I wanted to get her opinion/have her educate me on what I want as far as her eye surgery goes (which will be done at the same time as her jaw reconstruction in August).  They did a thorough exam and her eye sight is great, so that's wonderful.  It was the first time she could help in the testing, which was very cool.  They gave her a board with four letters on it and she had to point to the one that matched what she saw on the screen.

I'm glad we went.  It was worth the time.  I can now speak to the plastic surgeon in Boston with more confidence.  And that's always nice.

Harlie's New Stroller

This is so not a good picture.  But, it's all I have for now.

Harlie's PT, Traci, ordered her a new stroller and it came in on Monday, June 25th.  The typical umbrella stroller was not made for an almost six year old!  Granted, she's not the size of an almost six year old.  But still, she had long since outgrown hers.  And we hang the suction machine on it too, so it was really hurting!  This one will grow with her and will hold her weight and the suction machine for a long, long time.  It is very smooth to push and it turns on a dime. And she is so much more comfortable.  I wish we didn't need a stroller at this point in her life.  But, she still cannot walk long distances - like at the mall, for example - or to a doctor's appointment when you have to park really far away.


Later on that day, Richmond had a big storm.  After I picked up the stroller, I went and got Murphy from Summer Blast (a school program) and headed to Wal-mart (so NOT a fan - but it was one stop shopping for all I needed).  The weather was beautiful when we walked into the building.  I knew there were storms predicted, but who really counts on a weather forecast anyway?  Within 20 minutes it was raining, hailing and the power went out.  The kids were not amused.

And I have no idea why they look like they are under arrest.  The little ones were a little scared and Murphy was really worried.  I, quite frankly, was pissed because I knew I wasn't going to be able to buy my yogurt and other items that I so desperately needed.  Ugh!  I know my cart looks empty, but I have to put all my items toward the front of the cart so I can have the space to banish a child, should I need to do so (which is usually pretty often).

The employees herded all of us shoppers to the area of the store that had no skylights.  It was so dark that I had to put Harlie and Cooper in the cart so I wouldn't lose them.  Murphy kept asking me if I was worried.  I had to keep telling him no (and refraining from telling him that I was pissed and annoyed).  After the storm let up (it was over rather quickly) they let us go (without any groceries, of course).  It was beautiful outside again.

On our way home I realized how bad the storm was.  A tornado hit not far from where we live.  There were lots of trees down/broken.  And the streets were completely covered in leaves ripped from the trees.  We had no power until the next day around 10am.  I know others had it way worse.  So, then I felt kinda bad for being annoyed I couldn't buy my yogurt.  As far as problems go, that's not that bad.

ENT

On Wednesday, we had an appointment with our local ENT.  I originally scheduled this a while back (when she was still sick).  But, kept the appointment anyway so I could get her take on the whole BAHA thing and how she does surgery, etc.

Harlie being sassy and having fun while
waiting for the doctor.

Some of her information differed from the surgeon in DC.  But, that's just the way it is.  You see 10 different docs, you're going to get 10 different opinions.  Now that she's healthy again (notice she's wearing her cap again, yahoo!) I am thinking of trying to work this in after all.  I just think that it will be more traumatizing to her to have to go back in for surgery after the big jaw reconstruction.  And I would rather it be less traumatizing if at all possible.  So, we'll just see how the schedule works out.

While we were at the appointment, Harlie signed "potty."  On our way, I closed the exam room door behind me, and didn't realize that Harlie's fingers were in the way (in the door jamb near the hinges).  Of course, there's no scream from her alerting you of pain.  So, it took me a second to realize what was going on.  I just happened to see them squished in there.  Ugh.  It kills me that she can't scream to protect herself from stuff like this (this is the second time this has happened).  Later on a nurse who just happened to be in the hallway when that happened knocked on the door to ask if she was okay.  She was so understanding, it was really nice.

Rooney

And I can't leave little Rooney out.  He's so funny.  Here he is with one of Harlie's HMEs (heat and moisture exchanger for her trach).

And sidewalk chalk.

He will chew on anything (except for most of the toys that I've bought him, of course).  And the other day he ate a box of crayons.  My first clue was his very colorful poop.  He clearly ate some of each crayon in the box.  I'm pretty sure every color was represented.  I took a picture - but that was just so I could show Tom (he was not amused) so I'll spare you the agony.

I try to tell the boys to pick up the Legos.  But they don't listen.  I told Murphy just the other day, "Murphy, you lost a pair of handcuffs today.  When are you going to stop leaving your Legos on the floor?"  I know, I'm an idiot.  Of course he's NEVER going to stop leaving Legos on the floor.  Duh.

But, Rooney's worth it.  I love that dog!

Okay, that's it for now.  Whew!

OH!  One more thing... I am working on a slideshow from the We Heart Harlie event.  I hope to have that ready early next week sometime.  And, I am still working on my thank you notes.  So, until then, please know how incredibly thankful we are to all the businesses/individuals that donated items for the raffle and to all who donated their time and hard earned money for our sweet girl!  Thank you!

I must blog more often.  These long updates kill me and my sleep time!

Thanks for reading!
~Christy

PS - this post is dedicated to my friend, Allie.  Thanks for checking on me and for motivating me to write again! xo

Incident at the Pool

Just a quick one to tell you about what happened at the pool today...

Tom and I took the kids and met my niece Maggie at the pool this afternoon.  The kids were taking a break from being in the water and were playing around our chairs.  They'd been out for more than a few minutes, and were completely dry.  Maggie and I were chatting while they were playing with water guns.  At one point I saw a kid (I don't know... about six to eight years old?) griping at Cooper about the water gun.  I assumed that Cooper must have squirted him or something. It appeared that the kid was walking past our area.  I watched him say something to Cooper and he walked away.  I didn't think much of it, to be honest.  Cooper's three, after all, and we are at a pool.  

The next thing I knew Cooper was standing at our chairs soaking wet and crying.  It took a second to realize that he was dry just a second ago.  And then Murphy said someone pushed him in the pool.  I was very confused - we were sitting RIGHT there.  Just a few feet from him a second ago.  As I was trying to figure out what happened, I could see a couple in the water/sitting on the side of the pool right in front of us.  It looked like they were aware of what was going on.  

I don't remember what I said to them, but the gentleman told me that someone pushed Cooper in the water (it was five feet deep where we were and Cooper cannot swim, nor is he five feet tall) and that he got him out of the water for me.  

WHAT?!?!?!

Cooper had been filling up the gun at the side of the pool, so I asked if someone accidently bumped him in the water.  He said, "I don't think so."  I, of course, told him "thank you" several times.  As if there is ever enough thanks you can give to someone for fishing your son out of the water and out of harm's way.  

As I talked to him more, he told me that this kid pushed Cooper into the water where there were several boys playing.  Everyone in the pool around that area could see that Cooper was struggling and one of the boys grabbed him and then handed him to this gentleman who put him back on the ground.  

Obviously Cooper is fine (thanks to those that saw him in the water) - but when I think about it, it makes my stomach hurt.  It doesn't help that I was talking to Maggie - and that I never saw it happen.  

Clearly, my first thought is that the person who pushed him in was that kid that was griping at him just a few minutes earlier.  So, I asked the gentleman if this particular kid was the one.  There were two kids in the same shirt.  I went and told a lifeguard.  

That sounds so ridiculous.  I told on him.  But, there is no way that is acceptable behavior.  You can't just go pushing a little kid into deep water!!!  What the hell???  And I really didn't think that I would handle it appropriately (a conversation with the kid, myself, I mean).  The lifeguard went and spoke to one of the boys, but it wasn't him.  Then we saw the other kid and I knew that was the kid that spoke to Cooper.  So, she went and talked to him.  

She returned and said that he admitted to pushing Cooper in the water.  But he said that he thought he could swim since he was standing by the pool.  Whatever.  And then she said that he has Autism and that she wasn't really getting anywhere with her conversation with him.  She said she was going to talk to his parents (but he was there for a party, and they weren't there).  But she knows who they are.  

I get that we can't control everything our children do - with or without special circumstances.  But, wow, is that dangerous!  Thank God for the guys that saw Cooper and rescued him!  Later on that kid walked by our area again and Cooper yelled at him!  Cooper wasn't with me when I was talking to the lifeguard or anyone else about it.  So, it's not like he heard us say it was that kid.  He knew.  Cooper pointed at him and yelled, "Hey, you pushed me in the water!"  The kid turned looked at him and then hurried off.  

It still makes me sick to think about it.  

And I couldn't help but think, what if he pushed Harlie in the water???  That could be tragic.  No joke. No exaggeration.  The trach is an open passageway to her lungs - with no protection from water.  Water would fill her lungs instantly.  And now I feel even more sick.  

I know that some would say she just shouldn't be around water.  Period.  But, she loves it!  How can I keep her from experiencing that joy?  Especially considering all she's been through?  She deserves some fun, too!  And she is aware that she cannot go in the water freely.  If she didn't know, and wanted to jump in, it would be a whole different ball game.  

But I can tell you that I would NEVER, EVER, send her to the pool for a party without someone looking after her every move.  I've already said that I cannot take the three kids to the pool by myself.  I just don't feel comfortable taking two non-swimmers, and one who needs constant, close supervision, alone.  I do believe that's just simply too dangerous.  

I actually tried it for Murphy's swim team practice this week.  Usually, I take them, but I don't let them in the water and they have to stand by me the whole time Murphy is swimming.  This time I let them get in the shallow end.  But, even that was stupid.  Especially considering I didn't wear my swimsuit that night.  BIG mistake.  Other moms around me had to help me keep an eye on them, and I'm just not comfortable with that.  

So, back to what I was saying earlier... I get that we cannot control everything our children do (I am really at Harlie's mercy, so I know this to be true and try not to judge others).  However, I can't help but wonder how many times this has happened before?  Certainly Cooper didn't make him so mad that this was the first time he'd pushed a kid in the water.  While I couldn't hear what the kid said to Cooper, I could clearly see that Cooper didn't say anything to him.  And even if Cooper did speak to him, it would have been his three-year old speak - and nothing to cause that kind of anger.  

I don't know.  I guess I'm struggling with how I'm going to protect Harlie and Cooper from someone pushing them in the water.  It adds another challenge and burden to the pool.  I worried about them losing their balance and falling in, but I certainly didn't worry about them being pushed in by a complete stranger!  

Thank God he's okay.  It will be years and years before I can relax at the pool, huh?

Thanks!

~Christy

Ortho Follow-up

Today's appointment went well, I think.  Just a brief overview...

This is the traffic we went through to get to the hospital in DC this morning.  Click on the photo to see it better.  Not that you don't know what heavy traffic looks like.  But, seriously?  How do these people do it every day???

Hello Northern Virginia!

Luckily, I managed to leave the house EARLY for this appointment.  Mark it on your calendars folks!  It CAN happen!  And I am proud to say that I even managed to work a shower in my schedule this morning.  (insert smug face here) I dedicate this to all my stay-at-home mom friends who know what an accomplishment it is to shower on a daily basis.  You know who you are!  So, that just proves if you pack all your crap the night before and your husband comes home early from the gym to help, miracles can happen.

Once we got off the interstate and onto First Street, she called "Mama" and I turned around to look at her and she signed "home."  I told her that we couldn't go home because we had to go see the doctor first and she started to cry.  Oh, break my heart.  This is the earliest she's gotten upset.  Usually it's when we pull into the parking lot.  So, she's clearly more aware of where we are, and where we are going and recognizes the way to Children's National.  So I told her it wouldn't hurt.  And that we were just going to do x-rays and talk to the doctor and that's it.  She stopped crying and that was that.  Whew.  The best part is that my word was true.  It didn't hurt and they only took x-rays and talked.  So, maybe she'll believe me when I say it will only hurt for a minute.  Or hold still and it will hurt less.  Wouldn't that be a nice change?

Okay medically speaking...

She's cleared for gymnastics again!  YAY!  But she said she doesn't want her high off the ground.  She wants to limit the risk of falling.  She has some stiff areas in her back (plus screws), and she could seriously injure herself.  So, no worries!  Do you think I could wrap her in bubble wrap and pull it off as a fashion statement? Because I gotta tell you - kindergarten can be rough!

From here on out we will have yearly check-ups.  So, that's good.  But, when she gets closer to age 10, we will increase the appointments because there is usually a growth spurt at that time and she wants to watch her more closely then.  Of course, if we see a problem or her x-rays show issues, then that plan will change.

She said that normally one's spine has some curve in the thoracic area (top) and is straighter in the lumbar area (middle).  Harlie's is opposite.  That's what throws her forward and makes her walk a little hunched over.  I think she said she has a 48 degree curve forward.  Remember that she has kyphosis scoliosis, which is when the spine curves forwards as opposed to scoliosis, which curves right or left.  Here are her x-rays from today... they are copies of the films, and then I took a picture of the copy with my cell, so they aren't the best quality.

Side view.
That object on the left is her pacemaker generator.
And those screws look so long!

You can see her trach tube at the very top.
There are coils in her lungs (in the black space).  The squiggly lines
are the wires that hold the sternum together after OHS.
And you can see the pacemaker leads and generator
and screws and hardware.
It's a busy little body!

I asked her if we are done with spinal surgeries.  She said she would be very happy if we are.  But, she doesn't know.  Only time will tell.  She hopes that her curve forward will not get much worse.  She said if it gets to the point where surgery is necessary, it won't be pretty.  She would have to insert rods and because she has so little fat on her body, the rods would protrude and be visible.  Ew.  She also noted that she thinks that's what happened to her back after surgery.  She thinks that since there's so little fat protection that it rubbed on the cast and caused the breakdown and subsequent infection.

She's also cleared to carry her own backpack.

So, that information was given to me in about 8 minutes' time.  Maybe 10, tops.  I don't mess around and neither do surgeons.  So, here's how it breaks down...

We left the house at 7:20am
Her appointment was at 9:45am
We checked in at 9:46am (security check-in to get into the hospital was a long process)
We were back in the car, driving away at 12:40pm.
I had to go to a drive through for lunch (ugh!) I specifically took an exit that would lead me to a Chick-fil-a.  But it was closed for renovations!  Major ugh!  So, I had to go to Wendy's.  Which meant I had to get a small vanilla Frosty.  Damn you Chick-fil-a!!!
We got home at a little after 3pm.

So, in a little less than 8 hours, I got in the neighborhood of 8-10 minutes in front of the doctor.  That's efficient.

I love my life.

Oh, and I think I mentioned that I'm going to start submitting my mileage for reimbursement through Logisticare.  Well, I went to write down the mileage (which was 220, thank you very much) and other info on my form (which is barely legible, by the way, since it's clearly a copy from a copy from a copy, etc.) they mailed to me to use as MY original and I see that they require a physician's signature.

Damn it!

Tom said he'll fax it to them tomorrow for me.  Of course, by the time it gets faxed to them, and then faxed back to us - who the hell will be able to read it?!

Must not give up.  At 40 cents per mile, it will add up.  I can't believe I am just now doing this.  After all the freaking miles I have driven!!!!

Must focus on the positive.  I can now sign Harlie up for gymnastics!  And she is feeling SO much better that I cancelled her appointment to see the allergist tomorrow.  YAY!!!  Now we know we can keep this little guy...

He got a bath tonight and he smells so good!  Apparently he had some unlucky timing yesterday morning on the walk to school.  He walked under a much larger dog, who shall remain nameless, Custer, ;-) right as he was about to pee so Rooney got a little "wet."  Ew.  Tom hosed him off, but I wanted him to have a proper bath after that.

Okay, it was a long day and I need to get to bed.

Thanks!
~Christy

Cardiology

Terri has been sick the past two days, so I have had to go to school with Harlie.  While I don't mind spending the day at school (sometimes it's actually quite fun) it stresses me out to think of all the other things that I'm not getting done at home.  And I feel bad that I'm not with Cooper and that he has piece meal care in these situations.

I need a back-up nurse.  But, that's really not a reality.  Even if I trained a nurse, they wouldn't be sitting around waiting for me to call them at the last minute.  Heck, at this point I can't even get a nurse to come to the house to do a meet and greet!  Much less show up for work.

As much as I have loved some of the nurses we have/had... I can't help but HATE being dependent on them.  It is such a crummy position to be in.

Anyway, this is the last week of school for the kids.  There has been a lot of talk about Kindergarten being over and the excitement for first grade.  I have no idea what Harlie thinks of it all (or if she even notices).  But I can tell you that it is not easy to know that your child's classmates will move on without your child.  Even when that was the plan to begin with!  I cannot imagine how hard it is for parents of typical children to make the decision to hold a child back and I really respect them for being strong and doing what's best for their children, despite the pain it can cause.

But, even though it makes me sad - for numerous reasons - I know that we made the right decision to send her this year.   Even though she missed 45 days of school, she gained a lot from the experience.  And I hope that because of this year, next year will be even better.  She will be older (and hopefully a little more mature).  She'll already know the routine and how everything works, so hopefully she'll be able to better focus on the education piece.  Plus, it was the first year for the Hearing Impaired program at this school.  And it was full of trial and error and many kinks to work out.  The staff learned a lot, too, so there will be some big changes for next year.  Which, I am really excited about.

They are expecting six new HI students to start kindergarten next year.  There were only four this year.  They split the four into two different classes.  One of them is moving this summer, so she won't be returning.  Harlie is repeating and I know one is moving on to first grade.  I'm not sure about the other one.  So, there will be 7 or 8 HI students in kindergarten.  They are going to have a collaborative teaching class with all HI students in one class and the rest general ed students - with one gen ed teacher and the HI teacher.  I think they will also have an assistant, too, but I'm not totally sure.

I think this will be a great set-up.  I think it gives them the best chance to keep up with the class.  Once we pulled Harlie out of class for HI instruction, she really fell behind the class, and then incorporating her back in just wasn't an option.  Honestly, she would have fallen behind anyway.  She's had much less experience with language than a typical child, so of course she has way more to learn.

But I want to give her the best scenario I can, and I believe that this will be better for her.  I just hope that the parents of the typical children in the class are all for it, too.  If they are anything like the parents in her class this year, it will be great.  All of the parents I've met (even parents from other classes) were so nice and supportive.  I will certainly miss them, and the kids, next year.

Today we left school early so I could take Harlie to her cardiologist appointment.  We will now be followed here for her pacemaker by Dr. G.  I am very thankful that we can do this here locally and by her own doctor who already knows us so well.  At these appointments, she will get an EKG and they will check the battery to her pacemaker to make sure that it has plenty of life left in it.  He said her battery should last her 5-7 years.  We will have more frequent appointments initially, and then they will taper off until we get close to the end of the battery life.  At that point, the appointments become more frequent - and then monthly until the pacemaker indicates it only has a few months left.  That gives him the notice he needs to get a battery change on the schedule (done in the OR).

Tomorrow we travel to DC for her orthopedic follow-up appointment.  That will make the third day in a row that I haven't been home to do my jobs.  I can guarantee you that I'm going to be missing some deadlines and Cooper.

I hope that her ortho surgeon will give her the green light to resume gymnastics.  My fingers are crossed!  And my eyes are closing.  It is time for bed.

Thanks for reading!
~Christy

Gymnastics

Some good news!  Harlie has been getting better every day and for the first time in MONTHS I only had to wipe her nose ONCE today!  Just ONCE!!  Halle-freaking-lujah!!!

I cannot express to you how freaking elated I am that she is on the mend.  Seriously.  The stress I have been carrying thinking about "what if she doesn't get well in time" or "what if she's allergic to Rooney"  has been KILLING me.  Maybe I haven't expressed it truthfully.  Maybe I've been masking it a bit trying to be strong and brave.  But, deep down inside I've been so worried!!!  SO WORRIED!!!!!

Whew!

I've been so stressed that I've been taking it out on my own poor Mother!  As if it is her fault, right?  Well, I saw the light today.  Thanks Lindsay and Todd!

Harlie was invited to a birthday party for Lindsay and Todd's daughter, Peyton, at River City Youth Fitness, which is where Harlie had gymnastics for six months (before her spinal fusion in March 2011).  I really struggled with the decision on whether to let her go or not.

She has her appointment with her orthopedic surgeon on Wednesday.  She hasn't given her the clearance for gymnastics yet.  We could possibly get that then.  But, she could also take x-rays and decide that she's not ready for gymnastics.  So, do I let her go?  Or not?

I knew that she would LOVE it.  But what if I had to tell her she wasn't allowed to do something even though everyone else in class was doing it?  And what if I forced her to remember something that she loved - and then reminded her that she wasn't allowed to do it?  Hello, torture!

I struggled.

But, then I had to err on the side of her loving it.  She gets to do so little that she truly loves and enjoys.  It's so unfair.  So, I decided I had to let her go.  And deal with the consequences later.

And I am SO glad that I did!!!

She loved it!  Wow! It was SO obvious!  And she didn't miss a beat.  It's been more than year since she's been there and she remembered everything.

There was a spring to her step.  There was a smile that I haven't seen in months.  And my heart just couldn't take it!!  I must sign her up for gymnastics.  Granted, it would be in the 3-4 year class, but who cares!?!  She's out there and loving it!  Isn't that just refreshing?  She doesn't care that she's not the same age.  She's just happy to be there!

The coaches were awesome.  They were so glad to see her again.  And they told me that they have been thinking about her and wondering how she's been.

We left and my spirits were lifted.  Truly.  I don't know that I realized how down I've been about her health.  I've been in a really crappy mood for a long time.  Seriously.  I've noticed before that my mood mirrors Harlie's and it felt so nice to be happy again!!!  Wow.  It has been too long!

On my way home I called my Mom.  I've been especially shitty to her.  It's really been awful.  And I'm not proud of that.  But, it's true.  I wanted to tell her how awesome of an experience it was.  I saw other parents' facial expressions.  People I didn't know.  And I could see their expressions.  They could see Harlie's happiness, too and they were moved by it!  Well, I can't confirm that.  But that's what it looked like.  And usually I avoid eye contact with other parents I don't know.  I don't want to see the look on their faces.  The look that says they feel sorry for me and they are so thankful their kids are healthy and not like that.

Anyway, I wanted to tell my Mom that I was sorry for being so crappy to her the past several weeks/months.  I didn't mean it.  It's just so hard to live like everything is okay when it's not.  It's really not okay when your kid is sick and you're anticipating a major, crazy, stressful surgery and having to travel for it, no less.  And you know she's going to miss the first day of school.  And as a Mom, I'm going to miss the first day of school for Murphy.  It's just so NOT right!!!

My Mom didn't answer.  But I knew she'd call me back.

Tom and I went to an adult party at the pool where we belong.  And my Mom called me.  I got to tell her how sorry I was.  Luckily, being the great Mom she is, she forgave me.  Yes, she noticed that I was not nice.  But she let it go.  Thanks, Mom!

And I am happy.  To think of how happy Harlie was today makes my heart swell.  Wow.  She's been through way too much.  And she's still so happy.  I wish I could have video'd her today so you could see what I'm talking about.

Okay, that's it for tonight.  More later!
~Christy xo

What I've been working on lately...

Preparations for our Boston trip

Mostly for the pre-op one in July.  Our schedule has been finalized and there is a lot packed into two days.  We will fly up Monday night (July 22) and have appointments all day Tuesday and Wednesday, and then fly home Thursday morning.  Unfortunately Tom cannot go with us.  And while I know how important it is for him to provide for our family (since I'm not going to do it!) it doesn't make it any easier when we have to go through something like this.  I can't help but feel sad that we have grown so accustomed to major medical ... stuff, that this is becoming practically "routine."

I try very hard to not compare our life to others.  But it is a daily struggle.  I know that most couples would do this kind of thing together.  Which we would, too, if it were a single instance.  Or maybe one of several.  But after years and years of major surgeries and hospitalizations... it's just not possible.  Sometimes it's hard for me to look back on all we've been through.  It just seems so unreal.  And sometimes it's hard to for me to look to the future.  When are we going to finish with her to-do list for crying out loud?!?!  Instead of taking time off for surgeries, I want him to be able to take time off for vacation.

Okay, enough whining... one of the docs we are going to see is a plastic surgeon who is going to fix her left eye.  I use the term "fix" loosely since I'm not even sure it can be fixed.  Maybe improved would be a better word.  Guess I'll find out in July.

When Harlie was first born, her eye was pretty disturbing and I wanted it fixed yesterday!  And very shortly after bringing her home I took her to an eye doc.  But they told me it was best to wait till she was five years old or later.  Ugh.  That was a hard pill to swallow.  Back then she couldn't close her eye much at all and we had to keep ointment in it to protect it and keep it from drying out.  Yuck!  But, over time, she's gotten stronger and now she can keep it closed enough that we haven't had to put any ointment in her eye in years.

Anyway, her doc told me that she would have to remove the dermoid cyst on her eye and an oculoplastic surgeon would have to work on the skin around the eye.  I've heard mixed things about removing the dermoid cyst.  Some say leave it alone and let it be, some say shave it off, close the eye up, and hope it doesn't grow back.  I would have attached links for you, but I didn't get much when I googled it.  Just a bunch of yucky pictures, which I didn't think you'd want to see.  You're welcome.

But, we are only seeing a plastic surgeon.  No doc to get rid of the dermoid.  So, I had to make an appointment to see her doc here, so I can get her opinion/info, so that when I go up there I have some idea of what I'm talking about.  Of course, she's booked several months out.  I think they had a September date for me.  Um, no thanks.  I left a message for her nurse explaining the situation and she called me back that day and got me a June date.  Awesome!

I wrote the above a few days ago.  But, I couldn't finish it, so I didn't post it.  And now, the schedule has been changed a bit.  Instead of going up Monday night with our first appointment Tuesday morning, we will have to go up Monday morning for an appointment that afternoon with one of her docs.

I also heard from someone from the dentist office there.  She told me that a month after the surgery, we will have to return for them to place an "appliance" in her mouth.  Then she will have to be seen one month after that.  And then three months after that.  And then every six months after that.

I said, "What kind of appliance is this and how long will it stay in there?!"  She didn't know.  So, I guess I'll find out in July.  I am picturing some sort of permanent retainer?

Nursing

As of right now, I don't have a nurse to take Harlie to summer school.  Terri, who has been with us since October/November is in school and her class schedule conflicts with Harlie's.  This really sucks because I do NOT want to have to find a new nurse.  We are now comfortable with Terri, and I believe that she is comfortable with us.  And I just don't want to have to expose Harlie or the boys to another stranger.  I can't possibly tell you all the strangers that have entered my house since Harlie's birth.  And the other day I was taking Cooper somewhere and leaving Terri and Harlie behind when Cooper said, "I love you Ms. Terri."  It kills me that I have to bring home another new person for them to get to know.  It also kills me that I spoke to a nurse about coming out to do a "meet and greet" several times.  And then she no-shows me.  That was Monday, and I haven't heard from her, or the nursing agency since.

Allergist

Harlie has been junky and sick since about the same time we got Rooney (the last day of March).  I've asked her pediatrician and her pulmonologist about this.  But both say it is not allergies.  I want to believe them.  I do!  But, I have been having a nagging feeling that maybe allergies doesn't present itself in the same manner in her as they do in most kids her age.  So, given that this upper "cold" just won't go away, what if she is allergic to dogs?  I would die.  Seriously.  Can you imagine?!?! I just need to know for sure so I no longer worry about it.

So, I made an appointment for her to see an allergist next Thursday.

So next week, which is the last week of school, she has three doctor's appointments:
Tuesday, her local cardiologist (I will have to pick her up from her field trip in order to get her there on time)
Wednesday, her orthopedic surgeon in DC (an all day affair)
and Thursday, the allergist.

I've also made an appointment to see her local ENT.  That was made with this ongoing sickness in mind.  So, in the next three weeks, she has five doctor's appointments.  And that's just as of right now.

Logisticare

Apparently Medicaid will reimburse me for driving Harlie to her doctor's appointments.  I can't believe I didn't get this set up five and a half years ago.  Do you know how many miles I've logged traveling to her doctor's appointments?!?!  The reasoning is that it is in our Medicaid waiver that I can call Logisticare and set up for them to come to my house and drive us to her appointments.  It is clearly cheaper to offer reimbursement and let the parents take their own child(ren) then to have a driver come to get us for every single appointment.  Of course, I was on the phone with them about five times and I spent well over an hour trying to get that done.  You have to schedule a pick-up for each appointment and provide tons of info (where you're going, when to pick up, who she's seeing and at what time, etc.)

It's now days later and I got a message that said something was wrong with something and I have to review all my scheduled trips.  Ugh.  So, now I'll have to go back to spending some major time on that project.

Okay, there's more, but I am too tired to keep writing.  So, I'll have to continue later. Thanks for reading!

xoxo,
~Christy

Another tooth gone.

I wrote this post last night (Wednesday night) but fell asleep while typing.  So, I couldn't finish it.  Better late than never, right?

Wednesday Night

Two quick things tonight...

One.  I sent Harlie to school on Monday, Tuesday and today.  But, today was iffy.  She needed oxygen while she slept last night and tonight.  So, I picked her up early and took her to her pediatrician.  Her primary doc wasn't there, so we saw Dr. S.  Which I think worked out really well because she could provide some fresh eyes on the situation.  Harlie was especially green today (her secretions) so Dr. S. got a good look at what we've been dealing with.  And she thinks it's a sinus infection.  She put her on Augmentin for 10 days, but might go for a 21-day treatment.  Time will tell.  So, cross your fingers, say a prayer, do a good luck dance.... please oh please let this just be a sinus infection and let us kick it out once and for all.

Two.  Cooper accidentally knocked out one of Harlie's teeth today.  We were leaving swim practice for Murphy and Harlie and Cooper were climbing into the car.  She went in first, but she's so darn slow!  So Cooper just crawled on top of her to get to his seat.  I think he hit her with his shoe or his toy.

I was chatting with a friend and so I didn't see it happen.  And since Harlie can't make a lot of noise - I had no idea she was in that much pain.  There was no shrill cry that you know means pain.  I finally realized that she was crying and looked in the car to see her already in her seat.  So I asked her what was wrong and she looked at me and then I saw her mouth full of blood.  Ugh.  I cannot imagine how that must have felt.  This was not a tooth that was ready to come out.  One second you're fine, the next someone just kicked your tooth out.   Donna found her tooth on the floor.  It was a baby one, thank Heavens.

This makes the 5th tooth she's lost due to some sort of trauma (the other four were due to surgeries).  I swear sometimes that girl just cannot catch a break!

I sure hope the Tooth Fairy gives extra special surprises for that kind of tooth loss!

Thanks!
~Christy

More stuff...

Yesterday afternoon I wanted to beat the storm that was headed our way and take the kids and the puppy to Petsmart (all by myself, thank you very much) so I could have them trim Rooney's nails.  I am sorry, but it just HAD to be done.  I have tried - we have tried and after I got his quick several attempts ago, I just can't do it!  And it kills me because he was so GOOD when I was doing it that first time.  UGH.  I ruined him!

Tom called right before I left the house and told me not to go.  But, I didn't listen.  I lied and told him, "okay" and promptly put the kids and the pup in the car.  I was sure that would bite me in the butt, but it didn't.  It was a good, quick trip and I only lost Cooper once, for two minutes.  I call that a success!

So, to give you an update to my last post about the baha - on Tuesday I got a call from the surgeon.  She started the conversation by apologizing.  And then she said that she had read my post!

Uh-oh.

I must say that this feels weird.  This blog is my one and only therapy.  I need to write about this crazy life.  It helps me think things over.  It helps me remember events and experiences more clearly (vital with a medically complex child).  And it helps me to make some difficult decisions.  And I need to write freely.  Without the worry of who is reading it and how they will interpret what I've written.  But, I never want to hurt anyone's feelings.  And I'm sure, no matter what the content, it must be really hard to read about yourself in that way.  I wrote my friend, Ann an e-mail to tell her about it and this is one thing she said in response that I will remember - "I hope you still blog from your heart - it's what makes you special... and pretty damn funny too!"  So, I will continue to write and pretend that no one is reading.  

I think it's fairly safe to say that it can be difficult to disagree with a doctor and argue your point.  And it's one thing to disagree in private - another thing to disagree face-to-face.  I don't think that comes naturally.  Well, at least not to me.  Heck, they are the ones with the education.

But, I am her Mom.  And there is no one in this entire world that cares more about Harlie than me and her Dad.  So, I'm probably going to spend a lot more time thinking about our situation, researching our options and asking anyone I know for more information.  After all, I only have one patient to worry about.  A doctor has more than they can often handle.  I know that because we often have to wait months to get an appointment with various docs.  But don't get me started...

But I do hope through this blog and my experience, that Children's National starts offering Oticon products, too.  I do appreciate that the surgeon called.  And apologized.  We canceled her surgery scheduled for June 18th.  Regardless, she needs to be well four weeks before surgery, and she's not well.

She also said that they ordered her an Oticon Ponto Power processor (it's more powerful than the Ponto) and that it was approved by Medicaid.  But, in thinking it through, I think I'm going to get stuck with a bill somewhere if we proceed with the Ponto Power one.  MCV did not bill Medicaid for her Ponto, which was purchased in February (I believe).  It wasn't until I received a bill that they realized they never billed Medicaid.  As soon as we spoke, they sent the bill.  But that was only a few weeks ago.

So, I think the reason why they approved the power one in DC is because they haven't paid for the one she currently owns yet.  And it is now too late for me to return it.

And in thinking it through even more, I guess it's probably best to wait on the whole thing.  By the time she gets well, I'll need to keep her well before the big surgery in August.  And I'm already putting her on a plane for pre-op torture in July. I'm afraid going through several days of pre-op stuff, surgery and then surgery again is just too much in a few month's time.

It's kinda "funny" to me how we have such a small window of opportunity for some items on her to-do list.  And once that window has closed, we have to move on to the next thing.  I will have to re-work it in at a later date.  :(

Speaking of her not being well...

She has been on her breathing treatment antibiotics (Tobramycin) for over three solid weeks now.  Granted, it's a 28-day course.  However, I would think with only six days left - she would have shown some improvement by now.  Nope.  Her nose is still running like crazy.  It's truly awful.  The skin around her nose has broken and bled several times now.  We've gone through boxes and boxes of tissues and we're back to having to carry around a burp cloth with us.  She's missed the last three weeks of school.  And I am SOOOOOO over this!!!  I just want her to be well and at school like other kids her age.

It's now summer.   Which means the pool (she LOVES going to the pool) and birthday parties.  Last weekend she was invited to a birthday party for her friends Jessica and Samantha (twins).  I took her because she loves them and their mom is Lynda (the one who organized the We heart Harlie event) and I knew that she would be okay with me bringing her.  She had a bounce house - and what kid doesn't love to play in a bounce house?  Well, her nose is running so much that I had to give her the burp cloth and she had to bounce around while holding it, constantly wiping her nose.  Luckily, she didn't mind.  I suppose it was worth it to her.  It was hot outside though, and she can't handle the constant heat.  I don't really understand it - but between the trach and her cardiac issues - she has a really hard time regulating her body temperature.  So, we had to go back and forth between outside and inside.  But the party was outside.  So, a lot of the time we were inside where she was playing by herself in their playroom.

It's times like those that I hate having to be so different and make special "rules" for her.  But I feel lucky that she doesn't feel that way yet.  At least I'm not forcing her to go inside while she cries to go outside and be like everyone else.

I have so much more to write, but I'm taking the kids to the pool.  Yes, we will carry around a burp cloth and wipes.  Harlie will float in the pool in her little star float to keep cool.  Although today is a beautiful day and just 70 degrees!  Perfect for her.

Tom is riding in the MS150 this weekend.  They cycle from Richmond to Williamsburg (75 miles) today, spend the night in Williamsburg and then cycle back tomorrow.  So, please wish him a safe ride. He got rid of his motorcycle and then started cycling.  Not exactly the safest sport around.

Tonight, I am going to a party to benefit for Down Syndrome (a fellow special needs mom in our group has a little girl with Downs and is having this party).  I am really looking forward to the night out (although I will miss Tom) and spending time with my friends with special kids.  There are times I feel truly lucky - and being around them is one of those times.

More soon!
Thanks,
Christy