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

Lots of updates

The past few days have been especially difficult.  Way too much to do, way too little time.  I'm spread too thin.  Things, important things, aren't getting done.

But, before I get into that, here is something I haven't blogged about yet.

Murphy turned NINE years old on May 11th.  Gasp.  Nine!  How did that happen?  He was such a cute little bugger.  Here he is at two...

Crazy how fast time goes by.  Life was so different with this kid.  Those were a glorious 2.5 years. How carefree and naive we were!  And we were never sad.  My, how things have changed.

Well, being the awesome mom that I am, last year his birthday party was in August or something.  Pathetic.  So, this year, I thought I would outdo myself and have his party in May.  Late May, but still.  I know!  I'm good, aren't I?

We took him and a few friends to play putt-putt golf.  Then we went to Sweet Frogs for frozen yogurt and then home for a movie and a sleep-over.  I was super impressed when I woke up at 1:30am and heard silence.  I went downstairs to check on them and the tv was off and they were all in their sleeping bags, sleeping.  Way to go, boys!  I have a picture of them at putt-putt (the one and only picture we took, oops) that I want to send to all the parents with a note.  I hope I get to that item on my to-do list soon.  If you're one of the parents, don't hold your breath.  My intentions are good!  I promise!  Follow through, not so much.

And here's why...

Our last two days in a nutshell:

Wednesday, May 29th
7am - Run 3 miles
8am - go to Lowe's, buy dirt to plant flowers (preferrably before they die)
11am - Rooney, vet appointment
2pm - Dr. Dodson, ENT appointment, Harlie
5pm - Swim practice, Murphy

Thursday, May 30th
Terri off (no nurse means no school if I can't take Harlie myself)
10am - Dentist, Murphy and Cooper
1:15pm - Feeding Clinic appointment, Harlie
3pm - Hearing Impaired therapy, Harlie
5pm - Swim practice, Murphy

It might look like appointments are spaced out enough.  But they aren't.  There's no time to pee or eat.  Or walk the dog.  Or sit down (other than in a car, which doesn't feel like sitting down).  Or to do laundry, send emails, blog, go to the gym.  Or to pick up kids and drop them off.  Or to drive there! Blah!

Harlie has been coughing up some small blood clots in the morning (with her initial coughs after waking).  Then no more blood for the rest of the day.  This has been happening every morning for over a week now.  The first few days, I was like, "whatever."  But, it's been more than a week now.  And they are blood clots, not just blood.  Then she started to cough up a little of blood in the middle of the day.  Weird.  Especially considering she is not sick (thank God) and not coughing excessively.  Her sats are great and her nights have been restful with no coughing.  Combine this with the fact that she's not been tolerating her cap or PMV, and I was getting concerned that she might have a granuloma in her trachea.  So, I emailed her local ENT and she said to come in to see her the next day at 2!  Wowzer!  I've never gotten an appointment that fast.

Rooney had a vet appointment at 11am.  Then I had to go get Harlie and Terri and bring Terri back home to get her car.  Then I had to go pick up Murphy from school.  Of course I forgot that he rode his bike to school.  But, by then I didn't have enough time to let Murphy ride it home to drop it off.  So, I had to put it in the back of the car.

Then we rushed to MCV for Harlie's appointment.  Parking was a nightmare.  More than usual this time.  We parked, took the parking garage elevator to the street.  Then walked the half a block to a different building.  Then took a second elevator to the second floor.  Then got off that elevator and switched to a third elevator and took that one to the seventh floor.  Normally, I don't notice the ridiculousness of the process.  But, because I had all three kids and they kept looking at me with faces full of confusion, I noticed.  Plus, I'm tired.  And it's easier to get annoyed when you're tired. And of course my thoughts went to how awesome it would be if we had a real Children's Hospital.  Or even better, all healthy children.  Oh, to dream...

We all crammed into a very tiny exam room and saw her doc, Dr. Dodson, who I love.  First she looked into her ear and cleaned the wax out.  I know that sounds gross, but she can't help it.  Wearing an aid all day prevents any wax from working it's way out.  Harlie sat super still and Dr. Dodson was able to clean it all out.  I was so proud of her!  Then she scoped Harlie right there and Harlie did GREAT!  First she put the scope in her trach and did not see any granulomas or irritation in her trachea.  Then we removed her trach, and she put the scope in her stoma (just in case the source of the blood was around the cannula.  Nope.  Her trachea is "beautiful."  Which is fabulous, of course.  Except that leaves us with no answers.  :-(

If the blood isn't coming from her trachea, I guess that leaves her lungs?  Which means I have to contact pulmonary, which I don't want to do.  Quite frankly, I don't think I'm going to get any answers there, either.  She doesn't seem to be bothered.  So, I'm just going to wait it out a little longer. See?  I'm tired.  And probably seasoned.  I know doctors don't know everything.  I think I liked the innocence of thinking they did, better.

We got home that afternoon and then I had to take Murphy to swim practice.  Now that he's nine, he moved up into the next bracket.  So now he has to swim 50 meters.  Oi.  I don't have high hopes for this season.  And if he doesn't kick up some motivation and desire to put some actual effort in, it will be our last with him.  I just can't do it.  I don't mind working really hard if he loves it and wants to do it.  But, if he doesn't, I just don't have it in me.  I'd rather put that effort into other things.

So that day was all go (the morning was spent on planting flowers) and I got no time on the computer.  You know, to do the stuff that really needs to be done.  I don't know why I bought those darn flowers.  Now I just created more work for me that needs to be done in a timely manner.  

Then Thursday was crazy, too.  The boys had a dentist appointment at 10am.  And I have no nurse until Monday.  Both of our nurses are out of town.  So, I had to keep Harlie out of school.  Which totally sucks.  But, I have rescheduled that dentist appointment for months because of stuff like this - and I just couldn't put it off any longer.  So, off the three of us went.

We had to wait for an hour.  An HOUR!!!  Something must be going on with this office, because I have never had to wait that long.  Anyway, Cooper was already super whiny and thirsty and hungry by the time we got in there.  Awesome.

But, surprisingly, he was good - while in the chair.  Out of the chair was another matter entirely.  So, Cooper and Murphy got their teeth cleaned.  Cooper has a very small cavity.  Crap.  So, they want to fill it while it's still small.  Murphy's good.  And I didn't make Harlie an appointment because I was thinking that she's seeing the dentist in Boston.  Which is stupid of me because they aren't cleaning her teeth!!!  Ugh.  Having two dentists in two different states is not fun.  So, after the boys were done Harlie signed "my turn" and she broke my heart.  I wished they would just work her in real quick, but apparently it was close to lunch.  I don't know what the reason was.  There weren't any patients when we left (near noon) and there were several dentists and hygienists.  Hmmm.  Anyway, that sucked.  And it's totally my fault.  I just wish they could have bailed me out.

So, we got on the road at noon and then I realize that Murphy missed lunch at school.  Now I have to go by and get something for him to eat before taking him back to school.  Fine, whatever.  It's just that I had no time since I had to have Harlie BACK to the same place in an hour.  Ugh.

For the record, I don't plan on scheduling things like this.  It just happens.  Especially when Harlie's sick, so I have to reschedule something (which was the case for both of these appointments).  And with the Feeding Clinic appointment, she must be seen every so many days to stay in the program. And we had already pushed that envelope to the max (it had been like 263 days since our last appointment and we are supposed to be seen every four to six months).  But with this past horrible winter for Harlie, I had to reschedule, and it takes three months to get another appointment.

So, there you go.  It's just the way it is.  Which is why these past few days have been so difficult.  It's been all go and for nothing I want to do.  Sometimes, that just gets old.  OLD, I tell you!

Anyway, so I dropped Murphy off at school.  Ran home and fed and walked the dog (man, I love that dog!) grabbed a granola bar for me, fed Harlie and left Cooper with my Mom, got back in the car and headed back to the Children's Hospital.

To clarify, the "Children's Hospital" is not a hospital.  It is a long term care facility for kids who have medical needs that prevent them from living at home (or who don't have a home) and an out patient center for therapies (PT, ST, OT and feeding) and there is a dentist office.

So, we drive right back there and I park the car.  Harlie says, "Mama!" and I turned around and she smiles a big smile and points to her teeth.  She thought it was finally her turn to get her teeth cleaned.  Ugh.  Break. My. Heart.  Seriously?  What freaking kid wants to go to the dentist?  Especially with her oral issues!!  I hate myself for not including her in the appointments.  But, how was I to know she would want to have her teeth cleaned so bad??  Heck, come to think of it, in my defense, Harlie wasn't even supposed to be with me!

She now has an appointment for June 26.  Let's hope she's in the mood that day.  Oh, and to get Cooper's treatment for his small cavity (which the dentist said she wanted to do asap) yeah, August 3rd.  Whatever.

Moving on...  We go in for her Feeding Clinic appointment (15 minutes late, which, in my opinion, isn't bad all things considered).  And we waited some more.  We see the Feeding Clinic to see a nutritionist and make any changes to her feeding plan, discuss some GI issues, etc.  Finally, we go back and get her weighed in and measured.

She now weighs 42 pounds.  Woohoo!  Except that's not enough, really.  Darn it.  While she gained some weight, she dropped on the growth chart.  She is the size of an average five year old.  Which I figured since her and Cooper are the same size.  She finally just outgrew size 4t clothes.

Right now, Harlie gets tube fed four cans of Pediasure 1.5 (350 calories per can) per day.  We now have to add in an additional four ounces per day.  I know that doesn't sound like much.  But, I don't know how were going to do that.  It's difficult to get the four cans in some days.  And it's going to be really important for her to get those calories after she has surgery.  Her body is going to need all those calories to heal.

So, we left that appointment and hurried home to try to make it by 3pm so Harlie could get in her hearing impaired instruction with Cheryl Sale.  She comes to the house once a week to work with Harlie.  We got home at 3:10.  Whew!  Cheryl waited for us and Harlie seemed to have a good session with her.

After that it was time to take Murphy to swim practice.  Oh, brother!  I was really tired by then.  I still had not put away the clean dishes, or worked on the laundry that was half done.  Or sent the emails I need to send, or worked on the Medicaid letters I need to get done, or written any thank you notes, etc.  Wait, that's not totally true.  I did work on the Medicaid letter while Harlie was working with Cheryl.

So, I asked Harlie if she wanted to go to the pool.  You should have seen her face light up.  I asked her if she wanted to play on the iPad at the pool or get in the water.  She signed "swim" and her face was so freaking cute.  I wish I could have gotten it on video.  Then she gave me a kiss and a hug.  Which was so cute considering I asked for a hug and kiss while we were waiting at the feeding clinic and she said no.  I guess she decided she liked me again.

Well, who could refuse her cute little face - especially considering the whole dentist thing earlier.  And the fact that she spent practically the whole day at the Children's Hospital.  The only fun thing we did that day was take the dog for a walk in the morning.  We stopped by and picked up James (Cooper's friend) and I took them all for a long walk with Rooney.  The boys rode their scooters and I pushed Harlie in her chair.  We walked by the school and I couldn't believe our luck when I realized that the third graders were having an early recess in the bus loop!  So, we waved to Murphy.  I could tell immediately that he was embarrassed.  Whatever.  So, I waved even more enthusiastically and told the kids to do the same.  ;-)  Good times.

Anyway, so we all put swim suits on and headed to the pool.  Tom came up and met us up there after work.  We let the kids play for a while and left at 6:45 to go home.  The house was a wreck, everyone needed to eat, the dog needed to go for a walk, and it was bath night.  It was a busy, busy day.

This post is so long already, but I'm at school with Harlie today, so I am sitting in front the of the computer.  I guess I'll write for as long as I can.

So, back to my to-do list.  It's crazy long.  And some things are time sensitive.  Like these letters of medical necessity for VA Medicaid (since she's having surgery in Boston).  Or this meeting with the Prentke Romich rep to see about getting Harlie a new communication device.  They have stopped manufacturing Harlie's model because they are using the new tablet style technology.  And one of the new ones is super light and her ability to carry the device around herself could be life changing. But, we need to have that meeting before her surgery since she will probably be in pain which could affect her testing on the devices.  Blah, blah, blah.

So, I've tried all different "systems" of managing my to-do list.  But I have finally come to the conclusion that it's not a system problem.  It's a time problem.  There just isn't enough of it.  Period.  So, I think I need to be more efficient.  And one way to be more efficient is for me to have all of the stuff I manage (Harlie's medical and educational material is immense) in one place.  Crazy concept, right?  As of right now, I have notebooks in the kitchen, crammed in two separate cabinets, in the hall closet, and in the laundry room.  Seriously?  File one piece of paper?  Yeah, I don't think so.  So stuff just gets stacked and then I have to go through that stack to find what I need.  Because I know it's in there.

In summary, I need an office. Bad.  Really, really bad.

I came to this conclusion several months back.  Actually, longer ago than that.  But, my hands were tied because we still needed the playroom downstairs.  I am not ready to send Harlie to the third floor to play.  No way.  I will spend all my time trudging up and down the stairs tending to her.  But now, I am fine with her playing in her room.  She has a monitor in there and I can hear when she needs me.  So, I have spent a lot of time going through the playroom and purging toys, separating them into giveaways, consignment and keepers.  Then the keepers got put in the appropriate child's room.  The playroom is essentially empty.  I just need Tom to saw apart the last cubbies so I can re-use them and put them upstairs.  Then we need to replace the flooring, and buy some office stuff.  Like a desk, and cabinets and whatever.

So, on Wednesday night, (which was the day I went to the Vet, ENT and swim practice) we were supposed to drive to Northern VA to go to the Ikea store to check out the office furniture.  I want to do this as inexpensively as possible and I want the office to be pretty modern with not a lot of stuff to clutter it up.

Granted, I didn't have a lot of energy for the trip - but it was the ONLY night we could do it for several weeks and I need this room so, so bad!

Well, we ended up not being able to go.  And I was disappointed and frustrated.  And I was tired.  And annoyed that so many things I do are things I have to do and don't want to do.  And it doesn't help that the next couple of weeks have some really challenging days in them.

For over SIX AND A HALF YEARS now I have had to do countless things that have been unpleasant or downright painful.  And I have tried to be happy and smile through it all.  I guess I was just really, really tired that night.  So, Tom came home and I really had nothing to say.  So, you know it's bad when I'm quiet.  He kept on asking me stuff trying to get me to talk, but I just didn't feel like it.  Crazy, I know!

I just feel so... raw.  Like even the littlest of things - that I normally blaze right through - hurt.

So, you know it's bad when you're husband TRIES to get you to talk and then announces he's going to the store to buy wine, and comes promptly home and immediately opens the bottle, and then brings you a full glass.

It's been rough.  And I feel bad for him.  I wasn't mad at him, exactly.  Although, I need his help for this office project (I've done all I can do at this point) and you know the proverb, A cobbler's child goes barefoot?  Grrrrr.  So he got the brunt of my crappiness.

Life is hard.  And somehow we have to keep our chins up and smiles on our faces.  I think an office will help me do that.  If not that, Tom's going to have to buy a lot more wine.  ;-)

I'm about to wrap this long post up, I promise!  But first, a few pics...

Today, Harlie had speech therapy with Amy.  And she drew this...

I don't know about you, but that is the cutest darn snail I've ever seen!

And the other day Harlie was watching Wild Kratts on the computer.  She kept on asking us to look at the fish.  After a few, "Yes, Harlie, I see the fish" I realized she must be trying to tell us something.  So, I asked her to tell us with her talker.  And this is what she "said."

Ah ha!  So, she wants to go to an aquarium!  Awesome!  And with surgery in Boston in less than five weeks away, she'll get to when we get there.  Or maybe we'll have to take a trip to the Baltimore Aquarium before then.  Our kids have never been there.  I suppose we should try to cram as much fun as possible into June so maybe I can live with the guilt of what this summer holds while her jaw is being distracted.

Another huge sign of progress in her language development happened the other day.  We were standing in the kitchen and all of a sudden Harlie verbalized, "I gotta go potty."  I totally understood her.  And she wasn't saying that because she was prompted or asked or forced.  She just had a thought that she verbalized.  That's a first, for sure!

Okay, that's it!  We are home now and many other tasks are screaming my name (as well as my children!).

If you're still reading - thank you!!

Much love,
Christy xo

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

Some Updates

Sickness struck our house a little more than a week ago.  I don't know who got it first - Tom or the kids.  Runny noses are everywhere!  And despite all efforts to avoid catching it myself - I did.  So, now I'm sick.  And colds kick my butt.  Run 15 miles in pain, sure!  Live with a sore throat - please no!!!

And Harlie and Cooper's ears have been questionable.  But no fevers.  And they are playing like all is well.    So, I didn't think going to the doctor would do much good.  Although, Harlie really needs a follow-up appointment with her local ENT.  I just haven't scheduled it.  It's been such a busy time and we see so many people as it is.  I know I should have called by now, but I just haven't.  It sounds so different when I write it - in my head I can totally see why/how I haven't called.  Sometimes I just get so tired of appointments.  And she must, too.

I have a lot to write about so, I'll just write as I think...

Dentist
Last Thursday (the day I wore my slippers out in public) Harlie saw her dentist.  For the most part, her teeth look okay.  But there is one tooth that has some spots.  Her dentist said that it isn't a cavity - yet.  So, we need to watch it really closely and if it changes at all, we need to see her again.  She said that if it does become a cavity, they will have to pull it, under sedation, of course.  She said they don't take any chances with cardiac kids - so no repairing baby teeth for sure.  I have no idea what they do with permanent teeth.  There are some questions that I'm not ready for the answers.  

I have heard thin enamel can go along with Goldenhar Syndrome, but she said her enamel looks okay for now.  I've also heard that not eating orally can really mess up the normal bacteria balance and health of the teeth.  And I'm thinking that all the years of throwing up - daily - didn't help, either.

Hopefully, we've stopped the progression of the cavity.  Apparently that can happen.  So, I'm crossing my fingers.  Although, she's going to need teeth pulled for sure anyway.  She's got a lot of over-crowding on the bottom due to her jaw being so small from the get-go.

Feeding
As fabulous as she was doing with eating orally, she's taken another turn for the worse.  We've gone through so many ups and downs with her behavior during feedings.  Just when I think we've come through and made some serious progress - things go bad again.  It is so frustrating.

I am wondering if she has a sore throat, too.  Maybe it's her cold that's making it uncomfortable to swallow.  Or maybe it's her cold that's making her not hungry.  Or maybe it's a sore throat and the gritty texture of the food.  Or maybe we went too gritty, too fast and it has nothing to do with her cold.

If only she could tell me what's going on and how she feels.  And why she doesn't want to eat.  At all.  For a little girl who is so darn smart - why oh why can't she communicate her pain to me???  She doesn't ask questions, and she doesn't answer them.  It just makes me sad.

Cooper
The weekend of Thanksgiving, Cooper graduated to a big boy bed.

Well, I suppose I should say a "big boy mattress and box spring on the floor".  No actual bed frame - yet.  Tom wants to build something.  But, Cooper loves it!  I was a little worried.  Cooper tossed and turned in his crib.  I thought he would have a hard time staying put.  And he still woke up crying a lot of nights.  So, I thought he'd get out during the night, too.  But, he's only fallen out once, that first night.  And he seems to sleep very soundly now - with a lot less tossing and turning - and no waking up crying!  He must be so much more comfortable!

He's also loving preschool.  His preschool has curbside drop-off and pick-up (best idea, EVER!) and his teacher came to the door the other day and he exclaimed, "YEAH!" when he saw her.  It was so cute!

And he's been quite the challenge with the Christmas tree.  He's broken more ornaments than I can recall.  And I'll find some in another room.  But, it appears he adds to the tree, too!   The other day I went to plug in the lights from the mantel.  I wanted to find a connection in the lights, so I got real close to the tree and started looking closely.  And I found this...

Here's a closer picture...

It is the filter to Harlie's suction machine.  I just switched it out the other day.  So, this one must be the old one that he got his hands on before I could throw it away.  And, of course, I completely forgot about it once it wasn't in my sight anymore.

So, he removes actual ornaments, but puts trash in our tree.  Secretion-related trash.  In our Christmas tree.  We're so classy here in the Holton household.

Well, it is very late and I really should be sleeping.  So, this will have to be it for now.

Thanks!
Christy

Dentist

I have a lot of catching up to do...

Harlie went to the dentist last week. Her last visit was in August 2009. And surprisingly, her dentist said her teeth looked good, all things considered. Well, since she was wired shut for 10 weeks, lost her front tooth, and she had some major staining after feeding her blueberries, I just thought it was time for a check up.

She was far from cooperative. But, the dentist was able to do what she needed to do. She saw some spots on some of her teeth and said she needed to check to make sure they weren't cavities. I held my breath and said some quick prayers that she would not find any. I really would rather not add having to take care of a cavity to our list right now. Especially since a procedure like that would have to be done under anesthesia, which would mean I would have to find a dentist at another facility to do it. Um, no thanks. I'm booked for the rest of the summer, thank you!

Thankfully, they don't appear to be cavities at this time. YAY! Just some staining from those bleeping blueberries! She told me to brush her teeth with baking soda. Which I haven't done yet. Oops.

Okay, more later!
~Christy

Harlie's First Dental Appointment

Last Thursday (August 20th), Harlie had her very first dental appointment. I was pretty darn nervous. While I tried to think positively, I had fully "prepared" myself for major damage and decay in there. Here's why... I've heard that Goldenhar kids tend to have bad teeth.

1. The teeth are overcrowded because of the underdeveloped jaw. There's just not enough room in there.
2. For some reason, they tend to have thin enamel, which wears away fairly easily with constant vomiting (years, and years of daily vomiting). Seriously, the amount of vomiting I'm talking about would blow your mind.
3. She doesn't eat by mouth. And eating by mouth and chewing actually helps keep your teeth clean.
4. For the first two years of her life, we couldn't get in her mouth to brush her teeth. We tried, and did the best we could. But, because of her bone anomalies (missing part of her jaw structure on her right side), opening her mouth wide enough was impossible.
5. There's spotting on her front tooth, and with the millions of antibiotics and medications she's been on, I thought they might be to blame.

So, while I tried to think positively, I knew that I had to brace myself for something ugly.

I've been going to the main children's hospital here in Richmond for a while now - for nutrition appointments and feeding and speech therapies. It is not a full service hospital (like in DC). It provides outpatient services (therapies, feeding program, etc.) and it is a long term care facility for children who cannot live at home due to their complex medical needs. And every time I go there, I walk by a sign that says "Dental Services." Finally, I stopped and made an appointment.

They were AWESOME. I will totally take Murphy and Cooper there from now on. Seriously, this doc was GREAT! She asked me to tell her a little about Harlie and to tell her my concerns. She really took the time to explain everything to me - and what it means for Harlie. She told me about how most antibiotics are fine (there is really only one that does damage to the teeth, and it is only used in absolute life saving situtations because it has many bad side effects). So, the spotting on her front tooth is not due to her meds. And she told me to brush with a little baking soda once a week. Good to know.

So, she did her exam and said that her teeth LOOKED GREAT! I couldn't believe it! I still can't believe it! She didn't see any evidence of her enamel wearing away due to the vomiting. Wow! The only thing I can think of is that she's been on Prevacid since she was about 8 months old or so, so maybe that's helped keep the acid in check. At any rate, I am very happy. Then she showed me how to brush her teeth and sent us on our way. We'll go back in six months. Way cool. Seriously.

Now tomorrow I have Harlie's Eligibility Meeting to see if she qualifies to receive services from the public school system. All I'm hoping for is that they will give her speech therapy. Common sense would say that OF COURSE she qualifies for services! I mean, DUH! But, evidently it isn't that easy. This meeting has been weighing on my mind for several weeks now.

The thought of me sitting in a room full of people making a decision about my daughter when they haven't even met her, just kind of gives me the creeps. It's just a weird thought. They are going to read some stuff about her, have me talk about her, and then will determine what services she needs, or doesn't need. If they decide that she does need speech therapy, then we will write her Individual Education Plan (IEP). If they decide that she doesn't "need" any services, then I will have to appeal. Because, clearly, she needs as much speech therapy as she can get.

The whole process is just weird. It makes me feel like we are being judged. Like I am being judged as a mom and caregiver. And like Harlie is being judged as a little girl. I know it isn't really like that - but that's how it feels. All her doctors and any who know her, knows that she needs speech therapy (along with a lot of other stuff). But this group of people will ultimately make the decision. Kind of makes me think this is how socialized health care would feel like. Ew!

Well, the meeting is in the morning and I need to finish "preparing." Wish me luck!
Thanks,
Christy