Sick and Schedules

Hi All!  A few updates for you...

Most recent first - I have been coughing terribly the last few days.  As my wonderfully, caring husband said to me last night, "Do you know how annoying it is to hear you coughing all night?"  Yes, Sweetheart, I feel the love.  Not.

So, after I dropped Harlie and Terri off at school this morning, Cooper and I went straight to my doc's office.  He had a very intense look of concern on his face as they were taking my vitals.  He's never seen me go to the doctor.  Funny.  So, I took advantage of the situation and told him he better good or else!  No, I didn't.  I just hugged him and told him it was okay.

And it turns out I have a sinus infection, the beginnings of an ear infection and pneumonia.  YAY me!  I knew I felt like crap!  So he gave me a script for antibiotics and sent us on our merry way.  Total time I was in there?  27 minutes.  Not bad.  I then canceled Harlie's therapies for today.  I just can't do it today.

So, the other night I had this dream that I was being hunted by the police.  I wasn't as concerned about being arrested as I was about registering my kids for summer camps.  I kept evading capture thinking that they would realize after my arrest that I was innocent - but by then it would be too late to register them.  So, I just HAD to register them first, then I could stop running and all would eventually be well.

Yes, I did watch a Dateline earlier that day about a guy that spent 22 years in jail before they realized they convicted the wrong guy.

After I woke up and took the puppy out, I came back in and looked at the summer blast registration dates and CRAP, I missed it!  It was SATURDAY.  Damn it!  Summer blast at Murphy's school goes FAST and it was surely full.  It's a free program with our county and Murphy can go to his school for fun stuff from 8:30-2:30, Monday through Thursday in the summer.  Free!!!  And he loves it and wanted to go back again this summer.

But, I missed registration.  And it was full.  Ugh.  I wanted to cry!  How could I let this happen?

Okay, so I have been having some problems with my calendar and deadlines and stuff lately.  Okay, not lately.  Always.  But, it's been way worse, lately.  For example:

I have to order Harlie's medical supplies once a month.  Last week, I knew I had to place my order.  Our delivery day is Friday, so I have to place it by Wednesday or Thursday at the latest.  Well, we went to DC on Wednesday, and I was at school all day and then therapies with Harlie on Thursday.  Which meant I should have done it on Tuesday.  But, I didn't.

Normally, this isn't THAT big of a deal, because I try to keep extra supplies on hand just in case they are backordered or something.  But, I'm tired of all the storage issues.  So, I wanted to use up what I had before I ordered more.  Luckily (said very sarcastically) we were running dangerously low on her formula (her main source of nutrition), suction catheters (what we use to suction her trach) and trachs.  In fact, we just used her last trach on Sunday night for her weekly trach change, so nothing too important.  I still have one in her  emergency bag - but that should really stay in the emergency bag.  You know, for emergencies.

So I called first thing on Monday.  I was hoping that they would make an exception and deliver them early.  But no.  So, I had to drive to their office to pick up the supplies on Tuesday.

And, I missed the deadline to order Harlie's Field Day shirt at her school.  That deadline was last Tuesday.  She went to school on Monday.  But that was the night that she ran a fever and so she didn't go to school on Tuesday.  Then we were in DC on Wednesday.  I called the office from the car to ask when the real deadline was and she said 4pm that day.  But, we weren't back by then.  So, I missed it.

I almost missed being able to order Murphy's Field Day shirt at his school.  I noticed that the day after the deadline.  I called the company and asked if they could still sneak my order through.  Which they did, thankfully.  I don't care as much about Harlie not having a shirt because I don't think she cares as much.  She pretty much marches to her own beat (or at least it seems that way).  But, I think Murphy would definitely care if he was the only one without a shirt.

And I am the worst RSVP'er ever.

So, clearly I am having calendar issues.  I think my ultimate problem is that I find my calendar and schedule quite intimidating.  And for years, it has been difficult to make a commitment ahead of time.   Harlie would get sick, go into the hospital or surgery would get scheduled, etc.  So, like for her Field Day shirt - will she even be there that day?  She's already missed weeks and weeks of school.  Who knows?

The other problem is I have a hard time actually getting stuff ON my calendar.  Like Summer Blast, for instance.  That booklet was right next to my computer - ready and waiting for me to look at it more closely, and then actually add it to my freaking calendar.

I wallowed for a day or two and wanted to kick myself up and down.  Oh, I'm good at beating myself up, that's for sure.  Then I went to put him on the wait list, just in case a few people changed their minds about Summer Blast.  In the process, I saw that Harlie's school has plenty of open slots for Summer Blast there.  It just so happens that her school and our pool are in the same area and have a lot of the same people.  So maybe he'll know some people from the pool, or, maybe he'll meet some people  that go to our pool while there.  So, I signed him up there.  And he seemed happy about that.  Whew!

The real bonus is that I'll STILL get to drive to that school two times a day - even in the summer!  Ugh.   But, it will be worth it if he likes it.

So, I need to make some changes.  I need to take the time to put stuff on my calendar (duh).   And I need to take the time to set up reminders and alerts for some things.  And lastly, I need to actually look at my calendar on a more regular basis.  I'm thinking I'll have to start printing it out at the beginning of each week and putting it up on a wall so we can't miss it.  Maybe use some highlighting where necessary.  Ugh.

Another thing I need to do is use just one place for my To Do list/notes, etc.  I'm a freaking genius, aren't I?  I have shit written down all over the place.  Sometimes I use the back of an envelope that came in the mail that day - which, of course, I never see again, so that's helpful.

One thing I already started is to take care of the things in the kid's folders as soon as I see it.  Like, field trip permission slips and checks and stuff like that.  This week both kids brought home stuff about field trips and I took care of the paperwork right then and stuck it back in their folders.  Done.  Then I patted myself on the back for a job well done.  Now I just need to tackle my inbox.  Eh, I'll do that tomorrow. I feel too crummy right now to do it.

So, you might remember me mentioning how both Harlie and Cooper were sick during Spring Break.  Well, I ended up taking them to the pediatrician on Friday of that week.  They both had been sick for more than a week, it was time.  They got on the scale.  And it's official - Cooper weighs more than Harlie.  She weighs 33 pounds and Cooper weighs 34.  Just an inch more and Cooper will be taller than her, too.

Okay, I'm signing off.  I have much more to tell you about.  Some exciting stuff! But, I'll have to do it tomorrow.

Thanks for reading!
~Christy

Murphy Update

You might remember that a year and a half ago, Murphy was diagnosed with ADD and we put him on medication.

The meds definitely helped him in school and at home and he has done wonderfully in second grade.   However, it is never that easy.  Especially when children are put on a medication that they need to take every day.  Every medication has side effects.  And the side effects that are typically seen with these kinds of meds is a decrease in appetite and difficulty sleeping.  Although we haven't really experienced the difficulty in sleeping.  But we sure have been struggling with the appetite thing.

To combat the eating issue, we've calorie boosted his foods and pretty much let him eat whenever he's hungry (which is never).  We've tried all the normal things to do - protein shakes, milk shakes, etc.  But the problem isn't that he doesn't like it.  He's actually a very good eater (eats fruits and vegetables and most foods, really) when he's hungry.  But he just lacks the desire to eat.  He doesn't want it.  Even when he likes it.  Like milkshakes.  They are still a battle to get down. 

We also take him off his meds in the summer.  So, he loses weight during the school year, and then gains it back in the summer.  

So, where are we now?  

I was thinking that Murphy just doesn't seem like the happy kid he was a year ago.  Now, that could be our life.  We had a really rough summer last year with Harlie's spinal fusion and her body cast.  And she's just recovered from her pacemaker surgery.  And he's probably heard us talking about going to Boston and that upcoming surgery.  I know he's worried about her.  To him, I'm sure all of this is way scarier than it is to us because he just doesn't understand.  It's complicated stuff to a 7-year old. So, is it med-related?  I don't know.

We went on our mini-vacation back in March.  Still haven't been able to write about that... soon, I hope.  Anyway, he wore a swimsuit.  And it was size 5.  Which, in itself isn't a big deal.  All my kids wear small sizes.  However, it was then that I noticed how incredibly skinny he is.  Abnormally, in my opinion.  Grossly, quite frankly. Med-related?  Absolutely.

A month or so ago, he started coming home from school and going straight upstairs to nap.  He's almost 8 years old and he was napping.  That's not normal.  One day after his nap, he woke up and looked odd.  He was all sweaty and he looked like he was going to faint.  I immediately sat him down and made him eat.  And he was better. Med-related?  Probably.

Honestly, it was the napping on top of the unhappiness that made me initially fear some sort depression.  I asked his doctor if they see depression with ADD and they said yes, that certainly happens.  But after the nap when he looked like he was going to faint (and his skin and bones), I started to think that maybe he's just starving.  He doesn't have enough fuel in his body.  Period. I know how my mood is when I skip a meal.  And he skips most meals and barely eats at all.   In fact, at a recent doctor's appointment, he weighed 50 pounds.  Exactly two years prior, he weighed 47 pounds.  That's only a three-pound weight gain in TWO  years and he's grown several inches.  Not cool.  

That's it.  I'm putting my foot down.  My kid needs more food in his body.  I don't care what the growth chart says (I think he's around 75% for height and 20-25% for weight).  He is underweight as far as I'm concerned.   I had an appointment with his pediatrician to talk about this.   He said he didn't think depression was the issue here.  And he agreed that he's just not gaining enough weight.  They like to see a gain of about four pounds per year.  He's gained three in two years.   So, he took him off his meds entirely for two weeks.  Then he's going to do a full work up to make sure there's not something else going on that's making him not want to eat (like a gluten allergy).

Luckily, the first week was our Spring Break.  Although it sucked for me, quite frankly.  Harlie and Cooper were sick all week (still not over it) and between their constant goo and whining, I had to repeat myself 10,000 times to get Murphy to do anything.  I don't know how I survived.  Or how they survived... haha.  It was a less than desirable Spring Break, that's for sure!

It took about 4-5 days, but he got a little bit of an appetite back.  So we're cramming all the calories we can get in him.   This past week he was back at school and with no meds.  It was difficult.  He definitely needs his meds.  No doubt about it.  

He also never napped in the two week time frame and he seemed generally happier.  At least at home.

On Friday I took him back to the pediatrician.  We talked things over.  He asked him what he would want to do if there was a day that was all about Murphy.  Murphy was quick to start naming things that he would like (eat candy, buy Lego sets, go to the beach, etc.).  After a few questions like that his doctor said he didn't think depression was an issue.  And since he regained some appetite and his mood was better, there's probably not anything else going on.  So, we changed medications and we'll see how that goes.

At this point, Murphy says that he wants his "vitamin", as we affectionately call his meds.  He says he can tell a difference.  I'm betting that he probably knows he gets yelled at a lot less when he's on them.  So, we've told him that he has to try really hard to eat even though he might not be hungry.  He needs to make an effort to understand that he has to eat to give his body fuel and energy to play and learn.  We tried the new medication today for the first time.  Seems to be working okay.  We'll just have to see how things go.

So, that's his update!

Thanks!
~Christy

BAHA Consult Appointment

Today we went to Children's in DC to meet with a surgeon about a BAHA (bone anchored hearing aid).  She wears one attached to a soft head band now.  But, this appointment was to talk about getting one surgically placed in her skull, on her left side, which is the side without an ear canal.

When they called me to schedule the appointment (since we were referred by her ENT there, they contacted me) she told me that the surgeon likes for both parents to attend this appointment.  Well, at this point, after ALL the appointments we've had, that caught me by surprise.  Heck, I've taken her to heart caths and cardiology appointments by myself, which I find to be much more complicated subject matter than a BAHA.  Why all the fuss???

So, I politely explained that he most likely would not be able to attend, but I would check anyway.

Of course, he couldn't come.  He's busy and with a job like his (100% commission) that's awesome and I do not want to take him away from providing for our family for a BAHA appointment.  Not to make light of it, but I just couldn't imagine the information would be so difficult or involved that I would need him there.

So, this morning, off we go to DC, me, Harlie and Terri.

We arrive and wait a while before I get called to check in.  Keep in mind this is checking in - at the registration desk in the waiting room where everyone can hear what's being said.

The woman asks me, "Is Dad here?"  I said, "No, he couldn't make it" thinking that would be the end of it.

Nope.  She looks at me like I've lost my mind and stammers a bit, and looks around for help, backup?  I don't know.  Another employee sees her distress and asks what's the matter.  She tells her that Dad isn't here for a BAHA consult, pointing at me.  Ohhhhh.  Now two women have looks of distress (and judgment towards me, quite frankly), which attracts a third, older woman to the "situation."

This older lady has her arms crossed and literally looks down her nose at me.  Like I'm super crummy and have committed some sort of crime.  I can't remember word-for-word the conversation.  Probably because I had to focus on remaining polite and not letting my anger make the situation worse.  I really did not want to start off a new doctor-patient relationship on such a negative note.

But, basically they seemed to be questioning what to do - as if there was something to do about this!  I jokingly told them that Harlie's had over 20 surgeries, I think I can handle this appointment without my husband here.  When that didn't appease them, I further explained that if he attended all of her appointments he would no longer have a job.  When that didn't satisfy, I told them that she just had pacemaker surgery last month and he couldn't be there for that, either.

So, back off bitches and stop judging me and my marriage!

Well, that's what I wanted to say, but didn't.   And I never (okay, super rarely, since I just used it) use the word "bitch."  I think it's pretty ugly and it's only acceptable when used in a funny way.  Which is how I just used it, in my opinion.

Aaaaanyway... The older lady (the one who looked down her nose at me while her arms were crossed) said something about it "being their policy."  What?  Well, that's a stupid policy is what I wanted to say, but didn't.  So, I said, "that's assuming that the Dad has an active role in decision making."

Which, Tom does, of course.  But I was trying to make a point.  Let's get real... Tom trusts me to do the information gathering when it comes to her medical stuff.  We discuss and we make decisions.  After all we've been through in the past six years I think we've gotten into a pretty good groove (as good as we can considering the circumstances).  And this groove wasn't exactly a choice - this groove was formed out of necessity.  Our life turned upside down and we had to adapt.  Simple as that.  No need to judge us.

I know when he will be fine with a decision I make.  I know when he will want to be more involved with a decision.  And before I get ahead of myself - we weren't even at decision making time - THIS WAS INFORMATION GATHERING TIME!  So, what's the big freaking deal?

I was pissed.  And terribly offended.  Couldn't they see that I am seasoned?  That I'm somewhat intelligent and would be able to understand the information given to me without my husband there to help explain it to me?

I don't understand their angle on this "policy."  And talk about beating a dead horse!  Geez Ladies - you've made your point.  But he's not here and he's over 100 miles away right now.  At one point, one of them said, "Well, we really want the Dad to be present."  Oooohhhhh!  You want that, do you?  Well, I wanted a healthy baby.  News flash - we don't always get what we want.  Again, that's what I wanted to say.  But didn't.

So, I returned to my seat in the waiting area (about 7 feet away) and stewed somewhat silently.  I was kinda worried about how the surgeon would take it that we were there without Dad.  We got called back and luckily my social worker came to see us.  She stayed for the appointment.  And when the surgeon came in, she didn't seem to have any reaction to no Dad being in the room.

The appointment went fine and I learned a lot.  Apparently, I'm intelligent enough for that info.  Here's the basics:

A BAHA placement is a two-surgery process.

The skull needs to be 3ml to 4ml thick in order to implant the device.

There are no tests/scans to accurately show the thickness of the skull in every area.  And the skull can be 2ml thick in one spot and 4ml in a spot 1cm away.  This means that she just has to get in there and drill and see what happens.  If she drills and can't find an adequate spot, then she closes up and no device gets implanted.  And you wait for the skull to grow and try again in a year or years, even.

If she finds an adequate spot, she implants it.  The thicker the skull the better success at the implant "taking" and healing correctly (4ml or more is desired).  At 3ml, the risk is higher that the implant will be rejected or kicked out (she used a different word, but I can't remember it).  Damn!  If only Tom had been there.  Just kidding.  My social worker will remember.  Doesn't matter.

Extrude!  I think it was extrude (meaning to push or thrust out).

After implanting, you wait 6 or more months for it to heal.

Then they thin the skin that's covering the device and remove the hair follicles in that area, and they place the abutement, which is the thing that holds the actual processor (hearing aid) on the head.

Then you wait another six to eight weeks for that to heal before you can click the hearing aid on the abutement and use it.

Whew.

See?  That's not complicated.  I really don't want to offend anyone who's gotten a BAHA and found it overwhelming or difficult.  I'm just saying from my perspective, considering all the medical issues we've had, I found it to be pretty understandable.

Risks:

As I said earlier, the device could be extruded, if the skull isn't thick enough.

And since she's using a drill to the skull, which is covering her brain, there is a risk that the drill could touch/damage the brain.  She said she's never had that happen.  I told her the word "never" when used medically, is not comforting.  I guess she drills a tiny bit at a time until she hits the dura and then stops.  I am somewhat familiar since Harlie's had two craniotomies when they harvested her skull bone for her two prior jaw reconstructions.

Benefits:

The sound quality is much better with a surgically placed BAHA.  And right now Harlie has a difficult time being able to differentiate similar sounds (like p, b and d, for example - or block and clock, etc.).  I believe that if she could hear better, it would make a world of difference in her academics, social developments and overall self esteem and confidence.  And I think those are all really important things.

Not to mention that they also did some hearing tests on her and they said she actually could hear better on her left side (the one with no ear canal) than on the right.  I need to go over her test scores with her audiologist here locally, who has tested her many times to see if their test coincides with hers.  But they said that 20 is where you want to measure (meaning good hearing?) the higher the number the more severe the hearing loss.  She measured 40 on the left and 55 on the right.

So, if that's accurate - it seems that she would even more greatly benefit from the BAHA if that's her stronger hearing capability.

Since the surgery is outpatient (although they are going to want her to stay overnight because of her cardiac issues) it just seems like it's worth a shot to see if her skull is thick enough.

She mentioned that if we want her left ear rebuilt by a plastic surgeon in the future, then we need to know that they don't like BAHAs anywhere near the ear that's to be rebuilt.  But, from what we've learned about that - it takes many surgeries to rebuild an ear and they often don't look great - that's not even on our radar.  In fact, we are going to go with a prosthetic ear when/if that becomes an issue.  Her hearing is WAY more important than her ear's appearance.

So, I scheduled the surgery for June 18th, although I might change it to the 25th.  The last day of school is the 15th, so I might want to give her a week off before surgery.  I need to think it over.  I discussed it with Tom and he doesn't have a preference and referred it to me to decide.

I have to say that I think it's so funny that after all that fuss, I heard the info, made the decision and scheduled the surgery.  All without her Dad there.

We talked to the surgeon, left and went across the hall to be tested, then returned to schedule it with the surgeon.  When we returned, I had to check in again.  That older lady came up and asked me if the surgeon said anything about my husband not being there.  Can you believe that?!  Holy crap.  LET IT GO, LADY!

On our way home I talked to Tom about it.  He was super mad about them giving me a hard time about him not being there.

His perspective is this:  He already feels terribly guilty about the fact that he cannot attend most of her appointments, surgeries and hospital stays.  Someone judging him/us and giving me a bunch of grief about the way we have to live our life isn't helpful.  In fact, it's hurtful.  We never wanted any of this.  No child should have to go through all the crap she's had to go through.  We are doing the best we can and a little compassion could go a long way.

Okay, that's it.  I feel slightly better now.  Although I am totally going to feel way tired tomorrow (or later on today, rather) for staying up so late and writing this.  But, it makes such a difference when I can write it while the feelings and memories are fresh in my mind.  This one just had to be written tonight.

I have so much more to tell you.  But tomorrow is another day...

Thanks for reading!
~Christy

Pacemaker appointment

Harlie's pacemaker appointment was yesterday in Fairfax.  I told her that they were just going to look at her - no hurt.  Well, they did an EKG (which she HATES because of the stickers).  Here's a photo of her getting an EKG from her pre-op day before pacemaker surgery...

Anyway, she looked similar to that yesterday.  Just not as calm.

When they program her pacemaker, we have to hold this magnet thing over her belly.  The magnet thing is attached to the machine and info is transmitted through the two.  She sat in my lap and I held the magnet thing up to her belly while she watched Rio on the iPad.  She was able to watch the whole movie while there.

I know there are worse things, but it isn't easy to sit there and listen to how difficult it is to pace her heart.  They would set it on some setting and then watch to see what her heart did.  Then I would hear them say, "Well, that puts her in wenckebach."  Or it would be some other negative reaction, that does this, this does that, etc.  For more than an hour.

At one point I was reassured that even though it is difficult to pace her now, they will eventually get it right for her heart.  And I want to believe her.  I do.  But there's a part of me that wonders what this means in the long term.  And to be honest, I just don't like to be reminded how complicated her heart is.  They asked me if I had any questions.  I had to chuckle to myself.  I said, "No.  I'm just going to have to trust that you know what you're doing here."  I don't see me being able to have an opinion that would contribute in any way.

I had no idea that a pacemaker would be so difficult for her.

While sitting there, as I said, Harlie was watching Rio.  Well, at one point the room got very quiet.  The doc turned to me and asked what she was watching.  I said, "Rio.  It's a really cute movie."  And right then a scene came one (remember that it was quieter than usual as they were watching her heart activity and not talking at the moment) when all of a sudden - rather loudly - one bird says to another, "I was just on my way to CLAW YOUR EYES OUT!"

Yeah, like I said, it's a really cute movie.

 Awkward!

After they were comfortable with her settings, they sent her to John, to put on another freaking Holter monitor.  Ugh.  We removed the stickers from the EKG at the same time, and that was a real fight.  I REALLY wish she would understand that if she just held still it wouldn't hurt as bad and it would be over sooner.

So, our next appointment is in a month.  Unless her Holter monitor results make them want to see her sooner.  I'll take it off sometime this afternoon and mail it back.

Okay, that's it for now.  More later!
Thanks!
~Christy

Just some updates...

Boston

Everything is still a go for Harlie's fibula free flap jaw reconstruction (I hope I have that right) August 24th.  There are a bunch of things we need to do prior to surgery (mouth mold, CT scans, x-rays, pre-op stuff, etc.).  I asked them if we could do all that stuff up there at the pre-op a month before surgery instead of having to do it here and mail it back up there.  Luckily, a month's time is enough - so we are going to Boston to do all that stuff.  She said it's a lot - so it will take us 2 or 3 days.  So, around July 24th to the 27th is when we'll be there next.  It will be here before we know it.

I HATE that surgery is August 24th.  I SO wanted it to be more towards the beginning of the summer.  She will most definitely miss the first few days/first week of school.  I really hope this won't be a HUGE negative in terms of her making friends and feeling comfortable.  And I just realized that if she's still in Boston for the start of school, that means that I will miss Murphy's first day of school, too!  Ugh.

Anyway, Harlie definitely qualifies for summer school.  So, her hearing impaired teacher is going to focus on the material that they will be covering the first few weeks of school to try to get her as prepared as possible.  This is the year that really counts.  She needs to keep up with the class as much as possible. So far this year she's missed over 5 weeks of school.  That just can't happen next year.  (That's more of an out-loud wish versus a statement.)

Pacemaker

A few weeks ago, Harlie came home from an appointment in DC with a Holter monitor.  She wore it for 24+ hours.  And then I mailed it back to them to analyze.  Just for kicks, I thought I'd share with you some of the report I recently received in the mail:

The Holter monitor revealed evidence for sick sinus syndrome, periods of low right atrial rhythm alternating with junctional rhythm, and AAI pacing.  At the time of the max heart rate there appeared to be junctional tachycardia to a heart rate of 87 beats per minute.  In addition, there were periods of first and second degree AV block with rare AV nodal echo beats.  The longest R-R interval measured 2.2 seconds.  Atrial sensing was normal.  No symptoms were reported in the diary.


While in the hospital, Harlie had a persistent junctional tachycardia making it difficult to program her pacemaker.  She was subsequent reprogrammed from the VVI to AAI mode.  Given her first and second degree AV block we will reprogram the device to the DDD mode.  It may be tricky to ensure that she does not have persistent AV reciprocating possibly resulting in a sustained supraventricular tachcycardia secondary to her AV reciprocation.

Whew!  Got that?  So, basically her heart is beating, right?  Great!  That's what I'm getting out of it for now.  Until tomorrow...

Sometimes it pisses me off all the crap I have to learn.  I don't want to learn this stuff.  My brain is at full capacity for medical information.  It might look all glamorous.  But, it's really not.

Our appointment to see her pacemaker doc is tomorrow.  We haven't seen him since the last appointment when they put the Holter monitor on her.  So, one thing I can guess from the above report is that they are going to change it to the DDD mode tomorrow.  When we were there last they told me that they were going to let her heart rate get as low as 50 beats per minute during her sleep time (8pm to 6am).  So, I set her alarm at 45.  But three nights it has alarmed at 45 or lower.  So, maybe the DDD mode will help with that.  I'll just have to tell them and see what they say.

The other day I was at a friend's house and her kids were playing with a real cool toy - Magna-Tiles.  I watched them play and thought, Oh, I'm totally going to get these for my kids - they would love them!  


And then I remembered.  Harlie can't play with magnets.  Damn.  Some things just hurt.  No getting around it.

Her steri-strips finally came off her incision.  I think her incision looks fine, medically speaking.  But, honestly, I think the whole area looks awful.  It's all bumpy, or hilly, rather.  It just looks weird.  She just doesn't have enough fat to hide the generator, so it protrudes.  And the incision almost is concave in one area.  Add that to the protruding bony spot in her old sternotomy area and... like I said, it's weird looking.  It's just not what you picture when you think of how a 5-year old's chest should look.

When Harlie went back to school after the pacemaker surgery, she lifted up her shirt and showed a friend her "boo boo."  When Terri told me that I almost fell over.  She has NEVER done that before.  And showing people boo boos is a completely normal 5-year old thing to do!  She has definitely been WAY more aware of her incision this time - much more so than ever before.  I think at first I was interpreting that as pain or discomfort for her - but now I think it's just maturity.  And her last major surgery was on her back - and she couldn't see it (thank God!).  Oh, I don't want to even think about her next one (jaw).

ENT

So, I finally contacted Harlie's ENT in DC and came clean about her wearing a cap during the day (he didn't know).  I also asked about surgically placing a bone anchored hearing aid (BAHA).  We will need to meet with the audiologist there to see if Harlie's skull is ready for it.  I think it has to be a certain thickness or something before they can do it.  I know that doing the BAHA surgery this year would be too much.  The Pacemaker, BAHA and jaw reconstruction - all within 9 months or less - is probably too much.  But, there's a part of me that says waiting another year to do the BAHA is too long.  I've heard that you have to wait three months before you can use the anchor (to let it heal) so, no hearing aid can be worn on that side for that time (which means most get that surgery close to the summer).  And I've heard that kids who wore a soft band one and then got a BAHA said that the hearing quality is so much better with the BAHA.  To lose a whole year of better hearing - during a foundation-building year - seems unwise.

Sometimes the decisions we have to make really make me mad.  It is harder than you would think to balance her overall comfort/happiness with what's best for her in the big picture.  Reminds me of this post.

Anyway, that's it for today.  I have to vacuum the downstairs - for the millionth time - because Rooney puts anything and everything in his mouth.

Thanks for reading!
~Christy

It's Rooney's fault.

If anyone is curious... yes.  Having a puppy is VERY time consuming.  But, it's worth it.  Rooney's absolutely wonderful.  Really.  And even when my eyes feel like sandpaper, I can't help but smile when he looks up at me with his big, sweet eyes.

So, it's his fault that I haven't been able to blog in over a week.

He's done great, really.  His first night home was WAY better than I expected.  He slept soundly without one whine or cry.  But, as most dog owners who have crate trained a puppy could have probably predicted, the second night was pure hell.  And I'd be lying if I said I didn't think, OH, WHAT HAVE I DONE!? several times throughout the night.

He cried all night long.  I took him out to pee, no good.  I gave him a shirt of mine that I had worn recently, no good.  He wanted to play or love, and anything else wasn't going to do.  So, I put his crate in our bathroom and shut the door.  But we could still hear him, loud and clear.  Then I put his crate next to my side of the bed and I put my fingers through to touch him.  That worked.  Ahhhh.....

He slept for maybe 30 minutes, max.  And was up crying again at 1:40am.  I took him outside for the 3rd time, and he promptly peed.  Oh, thank goodness!  I put him back in his crate, by my side of the bed and he was quiet.  Whew!  I closed my eyes and was so thankful.  And after 3 blissful seconds, Cooper's door opened and I heard, "MOMMY!"

Crap.  Someone kill me.

I pried my eyes opened and found Cooper wet - from a leaky diaper.  And of course the bed was wet, too.  So I had to change the bed and Cooper's pjs.  I thought I was going to cry.  All I could think about was don't wake the dog!!  It really was an awful night.

But, that was it.  Every night since then has gone really well, with him sleeping soundly and no crying at all.  He really is a very good dog, so far.  He plays hard and sleeps a lot.  And everyone in the family is bonding with him...

Yes, this pup gets lots of love!

Last Monday I took him to his first vet appointment.  Everyone who worked there had to love on him, too.  All went well for his first check up.  He didn't need shots that day because the breeder got him his first round before we got him.  Today we go back for his second round of shots.  The vet said that we could take him outside - just no dog parks or anything like that.  So, we've started house training (or breaking?) in full force.  I watch him like a hawk inside the house.  And 9 times out of 10, he goes outside.  It's always that one time I look away to put something in the dishwasher.  Crate training definitely helps with that.

I've got a lot more to write, but am going to sign off for now.  We're having a lazy day today I think, so hopefully I'll be able to write more later.

Thanks!
~Christy

Meet Rooney!

Saturday was the BIG day!  We got to go get Rooney, our Pug puppy!

I took this one this morning with my cell phone.

In the car, on the way home.

Just in case you're curious where the name came from, the Rooney family owns the Pittsburgh Steelers.  I thought it was cute and it brings in something Tom loves.  And most importantly, Harlie can say it.  That was really important.  There were a few names I liked (before I came up with Rooney at the last minute) but Harlie couldn't say them.  And I think every time Harlie says it, she says it more clearly.  She can say all the sounds, except for the "n" sound.  So maybe she will soon be able to say it now that she has more motivation.

When we first got there, we checked out all the Pugs.

Rooney's mom is the one on the right.

I think that's his mom on the right.  She's so tiny!

Harlie wasn't scared at all.

I was dying to see him!  The picture I had of him was when he was like two weeks old.  He's exactly eight weeks old today (April 1st).  So, I knew he looked different.  I had thought about asking the breeder to send me a recent picture of him.  But, then I kind of wanted to be surprised.  So, I didn't.

Oh, he was EVERYTHING I wanted!!!  I asked the breeder if we could take him out on the grass, but she said he shouldn't go outside until he's 12 weeks old, and had all his shots!  Wow.  That's going to change how/when I house train him, huh?

Here's all of us as we were leaving with our sweet pup, Rooney.  Notice Harlie's shirt.  I bought that for her back in the fall when I was campaigning to get Rooney.

And Tom thought she would be scared...

Ahhh, just what I pictured in my mind!

He loves Murphy.

After we played with him for a little while, I gave him his first bath.  Who couldn't LOVE his little face?

Sweet Puppy!

It's hard to believe it, but he was even SOFTER and MORE cuddly after his bath!

This Mama is a happy Mama.

So much playing!

And then he was tired.  It was a big day, after all.

Harlie went to close the door, and she gently picked up his tail, put it in the crate for him, then shut it.  It was so cute!

Harlie was dying to put him in his crate.  For the last several days (since we got the crate) she has sat in front of it, getting it "ready."

And just to prove how incredibly comfy he is in his new home...

For his first night home, he did great!  We went upstairs to bed at 10:30 and took him and his crate with us.  He didn't make a peep and slept soundly till 5am!  Of course, Harlie's pulse ox alarm went off twice (I don't know how he slept through that beeping!) so I had to get up to see what was going on there.  She was fine, just had to reposition her.  Sometimes the way she's positioned affects her sats and lowers them.  Sometimes the pulse ox cord is kinked.  Anyway, all's good.

All in all, I think his first day home was a good one.  He has an appointment with the vet across the street tomorrow morning.  I called a few vet offices last week trying to figure out where I wanted to take him.  And I asked the vet across the street how they felt about Pugs.  The person told me that a veterinarian there owns SIX Pugs!  Wow!  I'm assuming he knows the breed pretty well.  So, we found our vet!  And it's across the street!  Bonus!

Anyway, I just have to share Tom's Facebook status from Saturday morning as we were getting ready to go get our pup:

"Today's the day.  Our little four legged friend comes home.  God help me."

And then after his bath, he uploaded the bath photo from above and said, "Alright.  He is cool."

That didn't take long.

So, I just have to get all mushy for a sec to say that my husband is an awesome guy.  Really.  Not just for all he does for me and his family on a day to day basis, but for agreeing to something he really, really did not want - just for me and my happiness.

Granted, I don't think it hurt to take my campaign public.  But regardless, he conceded and had fun announcing it in front of all our family and friends at my birthday party.  So, I think he's pretty awesome.

And after just a few minutes at home, I caught this:

Tom is smitten, too!

Oh, the Holton house is full of excitement with little Rooney running around.  We've had lots of visitors and he hasn't been without a playmate yet.  He's taken lots of naps in between visitors (thankfully for me!).  And yes, it's been very difficult to get anything done around here!  Even with Brandy's help during the weekend, I am finally able to get this post finished!  Whew!

I will try to work on our vacation post and pics soon.  It's been a really good few weeks lately.  It's hard to believe it's all true!  We really went to the beach and we really got a Pug!!!  Crazy!

Thanks!
~Christy