Dental issues are never fun.

A few weeks ago, when I was reading Harlie her bedtime story, she put her hand up to her mouth and signed "hurt."  I am not proud of this, but that particular evening, I was not up to the challenge of figuring out what was hurting her.  I just assumed it was her pins, or a tooth coming in or something.  I gave her a dose of Tylenol and called it a night.  About a week went by without another mention of it.

Then, again, while I was reading her bedtime story, she did it again.  This time her little hand shook a little while it hovered over her lower jaw.  I put down the book and told her to let me see.  I pulled her lip down, which is not an easy task (her skin is very tight around her jaw) and I found the source of her pain.  

She has a tooth that has come in on the bottom right.  It is her "S" tooth for those of you in the dental-know.  Her jaw has no room for all of her teeth.  So, this one popped out the front of her gum line.  It protrudes forward.  And it has rubbed a hole in her lip and it appears that the tooth sits IN the hole.  The hole is an open sore - like a really big ulcer.  Doesn't that sound so painful?  

I want it fixed. Like now.  

Of course, it's not that easy.  

First, I emailed her surgeon in Boston.  She said to find out if the tooth is a baby tooth or permanent tooth.  If it's a baby, we pull it.  If not, we discuss further.  

I then called her dentist and they got her in the very next morning.  Yes, it's a baby tooth ("S" tooth, baby teeth are letters, permanent teeth are numbers), thank God for small favors.  Now to find someone to pull it.  I should say "extract" it because pulling it sounds simple.  And, as you might have figured out, nothing is simple with Harlie.

Later on that night, Harlie sat in the kitchen floor and did this...

I never discussed her tooth issues with her.  Just with her doctors, around her.  Clearly she understands.  And knows this means the Tooth Fairy is coming.  Yes, sweet girl, the Tooth Fairy will not forget you.

Due to her heart and lung issues - she cannot be sedated at any outpatient clinic or setting.  She needs more monitoring, and that has to be done in an operating room, under general anesthesia.  

Numbing the area and pulling it - like some might be able to do - is not an option, either.  There is no way that Harlie would ever cooperate for that.  Please remember that this girl has been through more in her life than most can even imagine.  She is very fearful and the experience would only cause her more trauma.  PLUS, since her mouth is very A-typical, they have no idea what's involved with extracting this tooth.  

So, they will need to put her under, take x-rays, and then figure out what to do from there.  

The only facility here in Richmond that I'm comfortable with her going under anesthesia is VCU.  So, I made an appointment with the VCU dentistry, pediatric department.  They got us in for the very next day, which was today.  

At first, I was pretty annoyed.  I tried to read about the dentist that we were seeing and I couldn't find her anywhere on their website.  So, I called to ask and was told that she is a resident.  While I understand that a resident is a dentist, I knew this was too much for a resident.  And I just didn't want to go down there, have a resident look at her and her history and then tell me I had to bring her back to see someone else.  It was a frustrating conversation with some "IF she needs it pulled" and "IF she needs anesthesia" as if I had no idea what I was talking about.  Ultimately, I gave up and thought we would have to go just to get in the door and take it from there.  I vented to her cardiologist, who told me that once they met her they would understand, so I should relax.  He was right.  

When I checked in for our appointment, she told me that they re-assigned her from the resident to a faculty member.  I promise I don't want to be insulting to a resident, but I really feel like Harlie's earned some sort of gold star, premium membership, fast-pass, kinda thing.  She really shouldn't have to mess around anymore.  She's seen more than her fair share of residents in her lifetime.  

The practice was very nice and compassionate.  I handed over Harlie's five page medical summary and they listened.  Based on her previous jaw work and crazy mouth, they felt that an oral surgeon would be best to do this, along with an oral maxillofacial surgeon's involvement.  

They warned me that there was a wait for surgery dates.  So, I asked what do we do if Harlie's pain becomes worse or unbearable and he said, "Let us know and we'll prescribe something."  Hmm.  

But, since I didn't know a date yet, there was no point in arguing.  They sent me to the scheduler next.  

She sat me down and gave me a date - January 22, 2015.  WHAT?!

She saw my face and she started explaining.  She was awesome.  For real.  So compassionate and understanding.  She said that they only get two days per month in the OR - the first and last Thursdays of each month.  Considering her pain, she put Harlie on the hot list, which is a list of kids that need to be worked in ASAP.  As they get cancellations, she works them in.  I asked her how likely that was and she said highly, thanks to that enterovirus going around.  

Clearly, I am upset.  The thought of waiting almost four months to relieve Harlie of pain KILLS me.  Not to mention that her having an open sore in her mouth makes me very nervous about the infection risk.  We've been there, done that, more times than I care to remember.  And it's always been horrible.  Her infections have never followed the norms, either.  Because I never would have anticipated a four month wait, I didn't go over her infection history with them.  I wonder if that would have made a difference at all?

I totally get that their docket is full.  And I totally get that there are other children with pain related issues that are also waiting on their OR times.  I don't want to bump another child so Harlie can be seen sooner.  I don't.  

What I want, is to have a facility here where children don't have to compete with adults and fight for OR times.  I want a facility that can operate on her when it's appropriate for her, and not just put her in line.  As many times as Harlie has had to go into an operating room (40 surgeries, people!) we have NEVER had to wait almost four months for a surgery date.  Never.  

I put something about this on Facebook today and was astounded at the response I received.  So many caring friends offering to call people they know to see what they can do to help Harlie.  I wish I was the kind of person who was comfortable with this sort of action.  But, we need our local docs for the long haul, and the last thing I want to do is piss them off, or burn a bridge.  I don't want to have to have someone pull some strings.  I just want a facility that runs with the best interest of children in mind.  And having a child with heart defects wait four months for a surgery that involves an open sore in her mouth sounds like it's not in her best interest.  

But, then I remember all the infections.  And I know her history.  And the thought of this going the wrong way terrifies me.  After all she's survived, what if it was a stupid tooth that took her down?  And I was too nice to let people help.  I would never forgive myself.  

While I am mulling that over, I have already gotten a call in to Children's National in DC and I've emailed her surgeon in Boston.  I really don't want to have to go to Boston for this.  But, I am curious as to what kind of wait they have, just for comparison purposes. 

As much as I would like to stay local as much as I can, this is exactly why I leave Richmond.  It has nothing to do with her doctors.  I am very happy with them.  And VCU has a great PICU, with great nurses and doctors.  But, navigating this system, and knowing that kids come second to adults makes me take her elsewhere.  And so many people here think we already have a children's hospital.  Crazy.  

Well, it is late and tomorrow is another busy day.  Harlie has an appointment with the feeding clinic in the afternoon.  I'll let you know how that goes.  

Thank you so much for caring about our sweet girl!

~Christy xo

Our Trip to Pittsburgh

On Friday, November 30th, we headed to PA to see Grandma, Pap Pap, and the rest of Tom's family.  The kids spent over a week counting down the days.  We rarely get to take a trip as a family - for FUN!!!!  So, needless to say, we were all really excited!  I think it had been four years since Harlie was there.  Awful!

We managed to get out the door on schedule.  Although we did forget to pack Harlie's formula, which forced us to turnaround and go home.  We were on our last few cans and limping until our supplies came in.  They were due to be delivered that morning and I had asked them to deliver them before noon so I could have what we needed.  Of course, that didn't happen.  And there's another problem with her not being on store bought formula.  Ugh!

Anyway, the car was packed (except for Rooney).  We left him with Brandy again.  I am so glad he is a good pup for her and Brodie.  Thank you Brandy!

We got on the road and proceeded to have to listen to, "Are we there yet?" about a trillion times from Cooper.  Oh, Lord give me patience!

We also passed a spot with a memory for us.  I'm laughing just thinking about it.  It is a two-lane road with double yellow lines (Rt. 17).  Apparently, there is a "Bump" sign (which Tom pointed out for me, by the way).  Many, many years ago (way before Murphy came along) we were headed to visit his family.  I had a Ford Focus at the time.  I was driving.  I did not see the "Bump" sign and if I did I clearly ignored it.  Right after that sign there are some railroad tracks.  Whatever.

When we drove over them, we totally caught air and both of us left our seats.  I think if memory serves, Tom even bumped his head on the ceiling.  I can tell you that I remember the look on his face like it happened yesterday.  Oh, it still makes me laugh till I cry.

I wish I could have seen what we looked like flying through the air from the street.  Oh, funny stuff!  Oh, here we are!

As Tom drove past the sign, he pointed to it and said, "What did that sign say?  Oh, never mind, who cares?  We're making good time.  I'm going to speed it up a little."

LOL!  I am NEVER going to live that one down.

We had a great trip.  Although the first night we were there, Harlie went to go wash her hands and somehow lost her balance on the step stool.  She did a face plant into the vanity and knocked out a tooth.  Oh, there's something about her losing her teeth in traumatic ways that just bugs the ever loving crap outta me.  It was a baby tooth, thankfully.  But, since she's quickly running out of baby teeth, and is still just as unstable as ever, it's really only a matter of time before she knocks out a permanent one.  Her poor mouth!  Her dental future is a scary thing.

And you might remember that we were (and are still) dealing with her GI/constipation issues.  She's been wearing pull-ups for a few weeks now.  This is a time when I am thankful for her marching to her own beat - because she doesn't really care about wearing them.  Whereas most girls her age would definitely fight wearing pull-ups (after all, they're for babies!).  She seemed to be pretty good for a few days, so when we were there, I asked her if she wanted to wear underwear.  She said no and pointed to the pull-ups.  I didn't listen, of course, and put underwear on her.  That was a mistake.  She was right.  I was wrong.  I think it's time I give her a little credit and start listening to her more.

We celebrated Christmas with his family.  They are all so good to us!  Harlie loves her new scooter that Grandma and Pap Pap gave her.  Although as of now she's only ridden it in the house.  I must say that my stomach tightens when I think of her going down our street on it.  Luckily, I don't think that's really a goal of hers right now.

Tom took Harlie for a ride on the four wheeler and she loved it.

 Cooper did, too.

But Murphy did not.  Hence why there are no pictures of him on it.  Murphy did love one of her dogs, though.

Kristie (Tom's sister) and me.

Me and Tayne (Kristie's daughter).

The next day we headed down to Pittsburgh to take the kids to Lego Kids Fest.  That was great.  While waiting in line for them to open (they count down and shoot confetti into the air at opening time) there is a sign that suggests that you take a picture of your kids with your cell phone, just in case you get separated.  Pretty smart.

The kids loved it.  Here are a few pics...

Somehow, we managed to keep track of all three kids the whole time.  Although at times it was a little challenging.  Tom and the boys wore Steelers shirts.  Along with the rest of the entire crowd.  So, that didn't help much.  There was one area that was set up to build cars and they had race tracks for you to race them down.  All three kids loved that area.  Harlie could have stayed there all day!  It was a lot of fun.

After that, we had lunch with Tom's dad.  Then we went to our friend's house (we vacationed with them in Charleston, SC back in the spring) to watch the Steelers vs. Ravens game and stay the night.  We had a great time.

Then on Monday we came back home.  We heard "Are we there yet?" from Cooper a few hundred times, but considerably less than on our way there.  So, that was good.

We also decided on the way home that we really need to move forward with focusing on Harlie's communication device as her main means of communication.  While she wants to talk so desperately, and tries so, so hard... she simply cannot manipulate her mouth to be clearly understood.  I don't know when she'll be more understandable.  But, it won't be soon.  And trying to drive in the car, and figure out what Harlie is trying to say in the back seat is nearly  impossible and very UNSAFE.  She requires eye contact and time.  Two things you cannot give to a backseat passenger while driving.  It's so painful to know that she wants to say something, and you just can't figure out what.  If only she could talk - our life would be immensely better and easier.

When we got home, the kids wanted to ride their scooters.  So, Murphy looked for his helmet.  And that's when it hit Tom that Murphy rides his bike to school and we picked him up early on Friday - forgetting all about his bike in the bike rack at school!!!  OH NO!!!

So, they raced down to the school and found that the bike was gone.  :-(

While I know that we shouldn't have left it there (that was oh-so-stupid!) someone still took something that didn't belong to them.  We were just so excited to be leaving for a fun trip that we lost our heads for a minute!  Needless to say, Murphy was very upset.  And he rode his bike to/from school every day!  So, he really notices its absence.

But, one of Tom's friends and his wife, who are very kind and generous, reached out to him and said they wanted to get Murphy a new bike for Christmas.  I am constantly amazed by the goodness in people and how incredibly lucky we are to be surrounded by such good friends and support network.  And Murphy will be so freaking excited when he sees his new bike on Christmas morning!  I just can't say how thankful we are for these good people!!!

Okay, that's it for this post.  More soon!
Thanks,
~Christy xo

Post-op DONE!

Whew!  IT'S OVER!!! WOOHOO!!

We arrived at radiology right on time - 7:30am.  I'm only going to hit the highlights.  Because to be honest - I am beat!

After a lot of waiting and lots of questions a doctor came in to talk details.  She said that combining a non-radiology procedure (dental impressions, in our case) with a CT scan is unheard of.  She wanted me to know and understand that they were making an unprecedented exception.  In all of her 17 years here, it has never happened.  And I get that.  She said they get requests all the time to add different things to a radiology procedure to take advantage of a child being under anesthesia - but they always say no.  They have to.  Otherwise they would turn into a mini-OR and they would get so backed-up since all the machines are already booked as it is.

So, I guess this means that we're somewhat special.  For a second, I'm like, "wow, that's pretty cool." And then the reality of that sinks in, and I think, "Wow, that really sucks."

I'll try to make this simple...

She wanted to go with an anesthetic that I had never heard of (not that that means anything, really) and  can't remember what it was called now (started with a P).  The negatives were that the medicine would linger in her system for 48 hours, it would not relax her muscles like general anesthesia and that kids tend to be more agitated when they wake.

Way to sell it, Doc!

Um, no thank you!

In her defense, the reason why she wanted to go with that particular anesthesia is because it is less risky than general anesthesia.  Especially considering they didn't know her and she is a complicated kid - heart wise (and otherwise, but in that situation, her heart is the main issue).

My problems with that were:

1.  Her muscles (specifically her jaw muscles) need to relax enough that they can get the dental impressions.

2.  At that time, we had another appointment in the afternoon and then I have to put her on a plane tomorrow.

3.  She's been under general anesthesia more times than I can recall - more than 30 - and we've always been perfectly fine.  Her one risky episode was not anesthesia-related.  It was infection related.

My thinking was that it was actually more risky to NOT do general anesthesia - in the big picture, I mean.  The dental impressions were a must.  Period.  If she went under and they were unable to get them, we'd be screwed.

Not only would she have to go under general anesthesia in the very near future anyway, we'd have to rearrange our flights, and it would be a general nightmare.

Not worth it.  Especially considering I had never heard of that med before so what if she had a reaction?  Go with what you know or what you don't?

I hated to do it - but I had to put my foot down.  And I know she was annoyed.  And I can understand her view point.  She's been through many years of education, she's probably super freaking smart, she makes a ton of money and the bottom line is that she knows WAY more than me when it comes to this stuff.  And I'm a stay at home mom.

However, she does not have the big picture in mind.  And she will only have to deal with Harlie, and the  consequences of these decisions for a short time.  And, she just met her.  And I know her better than anyone should know anybody.

Maggie said that during our talk I said something and bent down to get my notebook from my bag when the doctor looked at her co-worker (I have NO idea who he was or what his position was since he did not introduce himself) and gave him this "look" like "oh brother" or something.

I know I wasn't wrong in my standing.  But it still stings to think someone looked at me and thought something not positive.  Especially when I work SO FREAKING HARD to do the BEST thing for my wonderful daughter whom I love more than life itself.  Just look at her already!

Two things really put me off -

1.  She asked me why we've spread our care all over the place (Norfolk, Richmond, DC and now Boston, MA).  To me, I think the answer is really obvious - because I freaking have to, that's why.  Same reason why I do a bunch of other crap I hate.  I can guarantee you it's not because I'm bored, have too much time on my hands or that I WANT to.  For crying old loud.  Something about the way she asked me that made me want to come out of my skin.

2.  She asked me why they want dental impressions.  Really?  Does it matter?  You just told me that combining procedures was a first in your 17 years.  Do you think it's not absolutely necessary?

After I told her I just wasn't comfortable trying a new med this visit, she left the room.

And I just need to say that doing this and standing my ground, or arguing my point, does not come easy.  You'd think it does since I am advocating for Harlie - but it doesn't.  So, if you're reading this and think you'd be all Mama Bear or something - unless you've been in these shoes, you can't say.  Doctors have this air about them.  And I would venture to say that most people think they (the docs) know better - so I really don't think arguing comes naturally.  At least it doesn't to me.  I'm a "can't we all just get along" kinda girl.

Anyway, the bottom line is that they went with general anesthesia.  And then the doc came back, she was super nice.  Maybe she thought about it and understood my point.  I made sure that I thanked her and let her know how much I appreciated her making the exception for Harlie.  Because I really do.

So, the dentist came in and got the impressions.  He came out to the waiting room to tell me that it was done.  AND THAT SHE LOST A FREAKING TOOTH!!!  UGH!

Maybe this shouldn't bother me as much as it does.  But I am SO over her losing her teeth before they are ready to come out.  Enough already!  I've officially lost count of the teeth that she has lost while in the hospital.  It really is the little things that hurt the most.  


He also said that they wanted to put some sort of retainer in her mouth post-op to help things progress - but that he thought that was unlikely.  He said her mouth is just too small.  There's simply no room in there for anything else.  Sigh.  Her jaw abnormality is severe and as much as I try to believe it's fine, it's not.  It's severe.  And that's that. 


For now.  


I still have hope we can turn things around for her. And the surgeons seem to, too.  If you have some good connections with the Man upstairs - feel free to pray!

Oh, and I can't remember why - but the doc wanted her to have an IV before she went into the CT scan room.  We originally said that they would get an IV after she was under.  They just hook up the vent with sleepy stuff to her trach and "night-night!"  I really don't know why they couldn't do the IV afterwards.  And maybe I should have argued that, too.  But, I didn't want to push my luck.

So, bring on the torture.  Thank goodness the nurse got it in one stick.  Woohoo!  Although Harlie fought like nobody's business.  She almost head-butted me and I can tell you that it would have HURT. She was really fighting hard!

The CT scan took forever.  They wanted to confirm what the surgeon wanted, so he had to be called out of surgery.  Oh!  And I got a kick out of this...

I knew that she was going to have some blood work later in the day so I told them they had to get what they needed while she had an IV.  So, they did.  Although she fights anything having to do with touching the IV.  She's insane.

After that we went to wind down for a little while till we had to go to our next appointment.  They have this garden area and there was live music and and it was really nice.  The weather was awesome.  Not too hot and sunny.

This is such a nice hospital.  I love it.

After that, we went to pre-op.  I was thinking we would be done relatively quickly.  We had already met with cardiac anesthesia (since they had to do general anesthesia) and they already took blood.  So, there wasn't much else left.  If we got out of there early enough, we were going to go back down towards the aquarium and let Harlie ride the carousel.

Boy, was I wrong!

One of the blood samples clotted, so they had to repeat it.  UGH!!!!!!!!  I made them justify that they absolutely, without a doubt, needed it today.  They seemed sympathetic.  But it still had to be done.

After all questions were answered (10 times per question at least for each specialty and department), we headed on over to the lab.  Harlie was fine until she got called back and saw "the" chair.  She knew what was going down and she was not happy about it.  She started to cry and it broke my heart.  It didn't help that I had to be the one to pick her up (against her will) and put her in my lap and then bear hug her to hold her down.

It took 5 adults.  And two attempts.  We were all sweating and the room (which was tiny) was hot as hell when we were done.  One of the nurses grabbed some paper and started fanning Harlie.  Something about her doing that touched me.  It was a very sweet gesture, and did not go unnoticed.  I HATE holding her down like that.  But I hate the thought of someone else doing it more.  In my mind I am hugging her.  Really, really tight. And I hope that she thinks that, too.

After that... we were DONE.  Hallelujah!

Of course it was after 4pm, and there was no way in hell we were going anywhere.  They have a playground there and I asked Harlie if she wanted to play on it.  She said, no.  So, we went back to the hotel.

I left Maggie and Harlie relaxing, watching tv, while I walked to the nearest liquor store.  I'm sorry, but I had to have a drink!

It is now almost 10pm and Harlie is still awake.  I don't get her at all.  She's had such a rough day.  Why isn't she sleeping????

We are almost packed.  I packed everything I can for now.  I want to go home.  And so does Harlie.  She misses her Daddy (she has signed for him everyday).

It is daunting to think that we will have to come back.  And learn a new ICU and new nurses and doctors.  And then leave.  Just to return again.  And again.  And again.

I hope that we've made the right decision and picked the right team to turn our lives around.

Okay, I have GOT to go.  I'm beat.  We have an early morning tomorrow.  Thanks for all your thoughts and prayers this week.  They were very much appreciated!!!  We couldn't survive this without your support!

Much love,
Christy xo

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

Harlie Lost a Tooth

I am at school with Harlie today.  She was finally 100% better and returned to school yesterday (Monday was a school holiday). Cooper is back at school today as well (he got it, too).  I got to exercise yesterday for the first time in a while and I think we are all happy again. Except for Tom, who has been in a grumpy mood lately. 

I have a couple things I want to tell you about. I might break this into two posts, so check back soon.

First, Harlie lost a tooth the other day. I had no idea it was even loose. Tom gave her meds on Sunday night and showed me that her HME was bloody. I thought that was strange, but didn't think that much of it. 

Then in the morning, I noticed that the cuff of her pj sleeve was bloody, too. Huh. Then I saw her wipe her mouth. So I asked her if her mouth hurt, and she looked at me and then pulled her lip down to show me her missing tooth. 

I knew there was no way she swallowed it. She gags on the smallest lump of oatmeal!  So I checked in her bed. Nope. Then checked the floor. And there it was. I think she must have pulled it, or fished it from her mouth and then threw it.

This is not her first lost tooth. I think she's lost a total of four during surgeries. And then Tom pulled her top tooth back in September. But that was because her dentist told us that it was loose. 

It just feels weird to wake up and have it be out without any notice. This is just one of those "little things" that kinda stings. I guess I have to start checking her teeth. You'd think I would notice when brushing her teeth. But I didn't. 

Luckily we go back to the dentist in February. Her one top tooth (the very first one she lost that was a casualty of her jaw surgery in 2009) still has not come in! I thought for sure it would have shown up by now. And that one is the one that will make the biggest difference in her appearance. Of course. 

Okay, that's it for this one. More soon!
~Christy

Quick Update

So much to blog, so little time...

Murphy

I can't remember if I told you that we had not restarted Murphy's ADD meds.  He gained four pounds over the summer (and he's still super skinny) and we were so enjoying having him hungry!!!  So, we were going to see if he could be successful without the meds since his teacher/class this year is a better fit (a calmer, less stimulating environment) for him.

I e-mailed his teacher Wednesday night (day 2) and let her know of his ADD diagnosis last year and that we had not restarted his meds and we would appreciate her feedback.  She e-mailed me back that he was doing "fine in some areas but having difficulty in others."  She said she wanted to meet with me or talk over the phone.  Darn it!!!

So, she called that afternoon and told me that he is a very sweet, respectful, social and likable kid.  But, that he cannot stay focused.  She said that he plays with the stuff in his desk.  When she was explaining something, she looked over and saw Murphy using two glue sticks as binoculars.  He clearly was not listening to a thing she was saying.

So, on Friday, we gave him his meds and sent him on his way.  The good news is that afternoon his teacher e-mailed me and said that he was so much better that day and that he was calm, focused, helpful and one of the best students in class!!!  At least we KNOW he needs the meds.  No more second-guessing ourselves on this one!

The bad news is that all day on Friday he only ate a few carrot sticks and a half of a granola bar.  All day!  It sucks that we have to chose between learning and nutrition.  They are both important!!!

Harlie

Kindergarten is going well for her, I think.  She seems to like it.  But, of course she can't tell me all about it.  Although I am THRILLED to report that she has been wearing her speaking valve (PMV) and she has been making a huge effort to verbalize.  The other day I asked her if she had a good day and she SAID - clear as a bell, "good day."  Murphy was in the kitchen and he could hear and understand her perfectly!  That was so awesome to hear!!!

There are some kinks to work out (which is totally expected).  Unfortunately, her communication device isn't being used the way it should.  And even more unfortunately, it's going to take some effort to get that to change.  After I found out they went all week without using her device I e-mailed her teacher that we need to have an IEP meeting.  The bad thing is that we had her last IEP meeting before we made the big decision to pursue using her device as a main means of communication.  So, she has been assigned a sign language interpreter.  But, that's not what she needs.  She can hear with her hearing aide on.  She just needs someone to help her use the device to speak.  So, we'll see what happens...

She missed the bus this morning.  Her original pick-up time was 6:48am.  On Thursday we were told the new pick-up time (starting Monday) would be 6:53am (YAY!).  So, this morning we went out at 6:53 and she was driving away.

The worst thing about this was that it was the one day that I had a commitment to be somewhere at 9am and it was an hour's drive to get there.  So, when she missed the bus at almost 7am, I still had to get a shower and get ready AND drive them to school (in the opposite direction of where I needed to go).  Oh, and my gas light was on, so I had to stop for gas.  Considering I woke up at 5:30 to start working on  getting her up and ready (I wake her at 6am after I give her a breathing treatment and meds) it was a busy morning and not a good one to miss the bus - it really stressed me out.  I felt so horrible that we didn't try harder to be at the end of the driveway.  But, we were feeding her breakfast and then on the way to the door Harlie said she had to go potty.

As it turns out, Brandy found out that after they told us our new pick-up time was 6:53, it got changed to 6:41!!!  And no one told us.  But the driver came at 6:48 and then waited the required TWO minutes and then left.  UGH!!!

So far there are a lot of issues with riding the bus.  And they are making me feel very stressed.  But, I really don't want to commit to driving them everyday.  So, I'm going to call Transportation tomorrow and see if they can do anything to fix the issues and make riding the bus a little more bearable.  As it stands right now - she spends TWO hours a day on the bus!!!  Doesn't that sound like it's too much?!?!?

I am also worried about the playground.  Jennifer went to school with her on Friday and she said that she was run over by the other kids.  She tried to help her play, but she's so slow compared to the other kids so they just run right over top of her.  Jennifer said that she and the other little girl that's hearing impaired gave up and just went and sat on the steps.  Ugh.

Tom measured the kids the other night on our measuring wall upstairs.  Cooper is one inch shorter than Harlie (and he's two years younger) and Harlie is SIX inches shorter than what Murphy was when he started Kindergarten.

Oh!  And Harlie lost her first tooth - naturally!!!  She's lost four in the past, but they were all due to surgical issues.  This is not the best picture - but it's all I got.  She didn't quite understand what all the fuss was about and had no interest in showing her teeth to the camera.

The picture was taken during a feeding.  Here are more photos from that awesome (note the heavy sarcasm) feeding session:

Are you still here?

Why do you make me eat this crap?

Honestly, I don't know who hates oral feedings more - me or her?

Cooper

Tomorrow is Cooper's first day at his new preschool!!!!  WOOHOO!!!  My house is a wreck, Harlie's food supply is low, laundry is piled high and paperwork is out of control.  Oh I can't wait to get some things accomplished around here!!!!  And I hope he really likes it, too.

Well, that's it for now.  More later!

Thanks!
~Christy

Dentist

So, back MONTHS ago (like June, maybe?) I took Harlie and Murphy to the dentist.  There is a dentist that I LOVE (Dr. Bortell for you locals) who has an office at our "Children's Hospital".  I quote CH because for those of you not from here, you need to know that it is not a full service children's hospital.  It is an outpatient facility that offers a great feeding clinic, other therapies and long-term care for kids who are medically fragile and can't live at home.

Anyway, I took Harlie there because I thought Dr. Bortell would have more experience and exposure to kids with medical challenges.  And I really like her.  She's easy to talk to and she's good with the kids.  So, I went on ahead and switched Murphy to her, too.

Murphy had a good check up.  No cavities so far.  So that's good.

Harlie's check up always makes me nervous.  She goes every six months.  And I'm always bracing for news that a tooth has a cavity or that she's going to need dental surgery.   And if she gets a cavity, they would pull the tooth (due to her cardiac issues, they wouldn't risk it trying to save a baby tooth).  I know it's coming.  I just don't know when.  She has the same amount of teeth in half the jaw.  And I can't get the toothbrush to reach her back teeth on her left side.  Since her jaw isn't symmetrical, one side opens more than the other.

But, surprisingly, so far, so good!  After about two seconds of looking at her, Dr. Bortell told me that her top tooth is loose.  Hmmm.  Didn't know that.  She doesn't use her tongue much, so she isn't touching her teeth with it, wiggling it around like a normal kid would.  So it is going to take a lot longer to come out.  Of course it's the left front tooth.  I would rather the one on the right side come out first because that's the one that is surrounded by empty space.  Ugh.

And I think I forgot to tell you that her two bottom teeth (two of the ones that she lost during her spinal fusion surgery) have come in.  Which tells me that they were probably a little loose to begin with.  Not that I would have known of course.  That also means that she lost two teeth at four and a half years old, which I think sounds a little early to be losing baby teeth.  I think Murphy was already in Kindergarten and well into five years old when he lost his first one.

And, then she told me that Harlie is already getting her six year molars!  She said that kids with medical issues (especially syndromes, like Harlie) are usually delayed in dental development.  But, yet, she is ahead.  Ugh.  One area where I would LOVE for Harlie to be delayed and she's ahead.  Of course.  And she said that they are going to hurt.  She has no room in her mouth for these teeth!  So, for the first time in Harlie's life, she's putting her fingers in her mouth.  While it isn't good for obvious reasons - I think it's good for her oral motor movement.  So, I'm not stopping her.  I tried giving her a chew tube thing, but she wants nothing to do with that.  I'm guessing she feels more in control of her own fingers.  I don't remember Murphy ever complaining about his molars, but I guess hers hurt more because they're trying to squeeze in.

Okay, that's it for tonight.  I'll have another post tomorrow.
Thanks!
~Christy

First Day of School

Harlie's first day of school was yesterday.

It occurred to me later that I might seem like a mean mom. She was discharged from the hospital at 5pm and was at school the very next day. No break for that girl! And you don't want to know what the rest of the week looks like!

Back to her first day... Somehow it was like she knew what was going to happen. Which is really weird, because she has no idea what "school" is or that you can take a bus to get there. Murphy walks, so it's not like she's seen him do it. But, when the bus got to our house, we told her that the bus was here, and she stopped what she was doing and was very cooperative putting on her coat and walking out the door. And we walked out the front door (which we never do and she went right along).

Here's Brandy carrying her to the bus...



And she wasn't scared getting on the bus. At all! Which I find absolutely astounding. And while the aide (rides with the bus driver) got Harlie in her harness, she cooperated as if she had done it a hundred times. No fear whatsoever, that girl. I just don't get it. After all she's been through, she's still open to new experiences! Amazing.



Here's Harlie, the aide (I think her name is Vonnie) and Brandy.



And here's sweet Harlie, all ready to go.



I told Harlie bye and signed "have fun at school" and she immediately signed "fun" right back to me. And she wasn't just repeating what I said, she was telling me she was already having fun!!! Seriously, how stinkin' sweet is that???

I gave Brandy the camera, and here are some pictures she took during the day.







Of course the IV antibiotics she's on is tearing her up. She's going through a lot of diapers. And she went through the pants she was wearing, and her back up pants and came home in a boy's size 5 pair of sweat pants. Now, that's a first day!

Here comes the bus to bring her home. Nope, we weren't staring out the window waiting for her. Not at all.



And home. After a very productive, fun-filled first day of school. See the cool sweats?



Her teacher sent a note home saying that they sang a song about losing a tooth, since she's the first one to lose one. And that she participated in all activities with NO refusals. Wow! What a turn of events!

That's it. More later!
~Christy