Another Random Post

Since it's been so long since I posted last, this post will be very random.

BAHA
Harlie will have her second stage surgery for her bone anchored hearing aid on February 12th.  It will be done at MCV in Richmond.  I really cannot wait to have this whole thing done.  When she plays at home her headband gets all askew, and then the hearing aid starts buzzing (feedback, probably because there's too much hair in the way).  It really will be so much better when it can be exactly where it's supposed to be and stay put!  I think it needs to heal for about six weeks before we can use it though, so we're looking at the beginning of April.  Whew, seems so far away still!

Harlie's School Stuff
Harlie is doing much better in school this year, than last.  They have been working on the AT family (sat, cat, mat, etc.).  That took some time, but I think she got it!  It's hard to tell because she can't say the words clearly enough that you always know what she's trying to say.  But, then they introduced the AN (man, fan, can, etc.) and AP (map, cap, lap, etc.) families.  Talk about frustrating!!!  For some reason, those are really difficult for kids with hearing issues.  And when I was working with her, she really couldn't hear the difference between man and map.

I spoke with her speech therapist about this last week.  She said that she has no frame of reference because she can't pronounce it herself.  She told me that kids who pronounce a W for an R (like Cindawella) will often write a W instead of an R because that's what they hear in their head when they say it.  Since Harlie can't say it, it's difficult for her to hear it in her head, you know?

It's quite overwhelming.  And I can't help but wonder what this means for her future schooling.  Harlie's cognitive ability is normal - but information has a difficult time getting in, and she has a difficult time getting the information out.  I owe it to her to do whatever I can to help her keep up with her peers.  But, I just don't know that I can do it all.  She would benefit from private speech therapy every day.  But, not only can we not afford that (it's about $100 per hour) I could never get that kind of time from a speech therapist (nor do we have that time in our life, either).  I would also like to get more academic practice and exposure in her day - but she's still just SIX years old and she gets TIRED after working hard for a few minutes.  I don't think I can fit more in her day.  Not to mention that Murphy has been taking up a lot of my time after school with his homework.  Third grade is the first year of real grades and he doesn't really care.  He's a bare minimum (or less even!) kind of kid when it comes to school work, like one word answers, instead of a full sentence (which always costs him points).

I know so many moms want to make me feel better about how hard it is to get a child to learn and keep up.  But, it's very DIFFERENT for Harlie.  Unless you know all I know, you just don't get it.  For example, she is six years old, and we are still having to ask her several times per incident to use three and four word sentences like "I want movie please."  In fact, I don't think we've even discussed teaching her to ask for a movie versus her saying "I want."  Until we get the I want on a consistent basis, I don't know that we can add in a "May I?" or Can I?"  Now think about what the typical six year old says and how much they talk.  Yes, Harlie is very different and it makes me very sad and scared of the years to come.  How in the hell is she going to keep up?  Well, she's not.  And that makes me sad when I know that her cognitive ability is there.

I volunteered in her class on Friday for their winter party.  I spoke with her hearing impaired teacher and we are having a meeting the week we get back to school to go over her communication modality. We've tried focusing on her verbalizations - but she just can't do it enough for anyone to understand her.  And she said as the material gets harder it's going to get very difficult for her to test and assess her when Harlie can't answer questions and tell her what she knows.  We've got to give her another way to let us know what she knows.  And I think the answer is going to be the communication device.  So, her HH teacher, her school ST, and the person who got us our communication device is going to meet to figure this out.   I think I'm going to have to learn a lot more about how to program the device and add photos, etc.  Because we are going to have to start focusing on it.  It's time consuming, but I don't think we have a choice anymore.  She clearly is capable of using it.  She will remember where a word is even when it's been weeks since she's used it.  Unfortunately, it's not going to be easy to make her to use it all the time, because not everyone knows how to or has the energy to make her.  Somehow, I have to get everyone on board (both her parents, her teachers, her nurses, etc.).

Feeding Therapy
Well, we've worked feeding therapy back in our schedule.  We see Allison every other Tuesday morning.  I hate that I have to take her out of school for it - but I believe Allison is worth it - and so is the importance of her learning to eat.  Last time we saw her she started working on getting Harlie to bite down (three times in a row) on a piece of puffed corn that was wrapped in a piece of fine mesh.  She's not ready to handle solids in her mouth yet.  It is amazing how complicated eating is when you don't get to do it as a baby.  All of her mouth muscles do not know what to do anymore since they never learned.  And now they are all weak (especially her jaw in general) from not being used the way they are supposed to.  Plus, her mouth is crazy, so that doesn't help.

I remember when Harlie was a little baby.  I used to tell myself that by the time she was ten, all of this would be behind us and it would be like it never happened.  HA!  But, I guess I had to believe that in order to get through that time.  She's six now.  And although I know a lot can happen in four years, I don't see her eating all foods as if nothing ever happened.

Eating is another thing that moms will try to make me feel better about by telling me how hard it is to get their normal kids to eat.  I have two of them myself, so I know.  And it is NOT the same.  It's not even on the same planet as getting Harlie to eat.  Her jaw currently doesn't have the strength to bite through a cheese puff.  Unfortunately, there's no feeling better about that.  It's just something we have to get through and continue to hope for progress.

Newtown
To be honest, it's been really hard to blog about my life when I think about all the parents of the children of Sandy Hook Elementary School (and everyone else involved).  It's really hard to talk about what's difficult/good about my life, when I think of what those parents are going through right now.   It's so incredibly sad.

Christmas Spirit
This one is not an easy one for me to write.  But, it's the truth.  And I'm hoping after I write this, I will feel better.  The Christmas Spirit has eluded me this year.  I LOVE Christmas.  But all three of my children have really been challenging for us lately.  And, Murphy and Cooper have driven me absolutely CRAZY.  I try asking/telling them to do what they need to do nicely, then I repeat myself.  Then I repeat myself a little louder and a little louder still.  Then I have to YELL.  For every single thing they are supposed to do.  Even getting them to hang up their coats takes an unusual amount of energy.  And multiply that with EVERY THING for all three, one of whom is non-verbal (who still needs help in the potty) and I never sit down!

Add my running in (which I have made a huge effort to do more of) and I am TIRED.  It has been exhausting.  We were going to take them to go look at tacky Christmas lights, but they were being so awful that night that we had to take that away.  And the worst of it was that they didn't even seem bothered by it.  And their behavior has made me not want to take them anywhere.  Like out in public.  We haven't taken them to go see Santa (they haven't asked, and there's really been no time - and again, that's out in public).

I've tried all sorts of ways to get the boys to cooperate - just a little even!  Even our Elf on the Shelf (Elfred) has failed to get them motivated to listen.  Maybe he's too lazy.  He should have left them a note or something.  Ugh.

Anyway, their behavior has been so crummy, that I think I'm still angry at them.  How awful is that?!  I just don't think I should reward that behavior with fun stuff.  We haven't made cookies.  Partly because of their behavior and partly because I can only get the boys half-way interested.  Harlie would not be excited about making cookies since she doesn't want to eat them.  She might help decorate, but that would be it.  So, I really don't want to do that because I HATE that she can't eat a freaking cookie.  So, that's more my issue, than the kids' fault.

I got a gingerbread house a few weeks ago.  It's still sitting in it's unopened box on top of the refrigerator.  I just don't want to do anything with them when they act like that.  It takes all the fun out of everything.  And I just don't have the energy for it.

So, it's now Christmas Eve and I feel like shit about everything.  Especially since I have my three children, all seemingly "healthy" and I am sitting here whining about their crummy behavior.  Not only am I thinking about Newtown, but I'm also thinking about all the moms that I know (through my special needs on-line support) who are missing their children that have passed.  And all the moms I know who are sitting in a hospital room with their sick child.  How can I sit here and feel the way I do???  What the hell is wrong with me?  I am normally SO much better at being positive than this!  And now I'm looking back, regretting the way I've handled things.

I should have written this weeks ago.  I just needed to write it to see it.  I just have to make the choice to be more fun - and inspire my children to want to make better decisions and want to listen.  Ha ha ha!  I know, I'm laughing as I write this.  But, seriously, I do make the choice (usually) to be positive in my life in general.  I just need to do the same thing now.  And I need to give them a consequence for not listening, instead of repeating myself till I want to cry.

Today, I think I might make them walk the dog when I get mad.  That way, the dog benefits, too.  Although it's rainy and yucky today.  Maybe I'll make them walk up and down the stairs.

Tom is on his way home now.  And I'm really hoping that he can bring some excitement and joy into this house.  On Saturday he went to Pittsburgh with some friends.  They went to the Steelers vs. Bengals game yesterday.  The Steelers lost and are now done for the season.  This means that Tom will shave his beard (or maybe he has already?).  We'll see when he walks in.  I'm looking forward to seeing his face again.  And I hope he arrives well rested and ready to parent!

Parties
We have been lucky enough to be invited to some great Christmas parties.  I will have to post pictures later because my laptop (with my photos) is currently broken thanks to the children.  Tom will have to fix it.  Considering my mood lately, I am very thankful to have these friends that invited us to their parties.  They were bright spots in gloomy days.  So more on that later.

Okay, I must go and muster up some fun in this house.   I have to let go of some anger and forgive my children more quickly when they completely ignore me and don't seem to learn from their mistakes.  I can do this, right?  Oh someone please tell me I'm not crazy, haven't lost it and that I'm not alone.

As always, thank you for reading and continuing to support me and my family in so many ways.  I do always feel better after telling you all my stuff.  :-)  My next post will be better.  I promise.

Merry Christmas and much love!
Christy xoxo

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

Another day gone crazy.

Oh, another day gone crazy.

Terri had a family issue today that she had to take care of, so she can’t work today.  Which means I had to take Harlie to school.  Of course, my day was packed already.  So whatever I had planned, can’t happen. 

Anyway, details on Rooney…

So, yesterday at 3:00, I noticed that Rooney had something in his mouth.  Upon closer inspection, I realized it was the cardboard from a package of Harlie’s hearing aid batteries.  I looked around and found the rest of the mangled packaging with one battery still attached.   There are six in a package.  I knew it was an unopened package when he got to it.  I looked around for more batteries and only found one.  So, that means that he swallowed four. 

I called the vet.  They told me to give him some hydrogen peroxide until he threw up.  So, I did.  And he threw up.  A lot.  I got the pleasure of going through it (while wearing gloves, of course) and found a few legos, the foil wrapper from a piece of candy, cardboard pieces and three already blackened batteries.  One was still missing.  I called the vet again.  They said to bring him in right then. 

I loaded the kids and the dog in the car and headed over.  When I was looking for a vet I called around to check pricing.  This vet was right in the middle – not the cheapest, but not the most expensive, either.  But, it’s biggest selling feature – it’s right across the street.  Can’t beat that!  And one of the docs owns five pugs himself.  No brainer. 

Anyway, I drop him off and go back home.  About an hour went by and they called me to ask for more information on the batteries.  What kind, does it have lithium, is there an emergency number, etc.  They said they’d be in touch.  They didn’t tell me about the x-rays.  I was afraid that he had only actually swallowed three and that meant that one was still lying around somewhere in my living room.  They are so tiny!  What if he found it later and ate it and I didn’t even know?!!?!  I searched the room over, but didn’t see it. 

Finally by 6:15 I had not heard from them.  Well, they close at 6:30!  What was going on?!  I have to say that I was really not that worried until then.  What if something bad happened?  So, I called and they said I could come get him and they would talk to me when I got there.  Whew!

When I got there the doc showed me his x-rays.  When he first got there, one was still in his stomach.  They gave him more stuff to make him throw up (and some special food).  He loved it.  And then promptly threw up another several times.  Oh, that poor pup!  But, it still did not come out!

So, they x-rayed him again, and it had traveled into his intestines.  Awesome.

Luckily, the batteries are not made with lithium.  She said if they were, they would have had to open him up right then to get it out.  Whew!  Can you imagine how much that would have cost?  Merry Christmas!  When they brought him to me, he sat down and looked up at me and the doc like, “What? What’s wrong?” Oh, too bad he’s not going to learn from this experience…

The doc said that they want to protect his esophagus, stomach and intestines from burning, so he’s on a special high-fiber food, and two different medications.  I knew it was bad when I saw that they had a little bag for me.  It’s never good to leave a vet with a bag of stuff.  

And $267 dollars later, I got to take him home.  He was on morphine (crazy!) so he was a little drugged.  We gave him a big pill that night (which he ate without problem, since he is not picky).  And he slept soundly all night. 

Whew. 

So, now I’m at school with Harlie.  She’s only going to get to stay for two hours, because I have an appointment I can’t miss.  Brandy is going to help me out for a few hours today.  Of course, I don’t have that shift change approved by the nursing agency yet.  I tried to call, but I had to leave a message and I haven’t heard back.  Which means I am going to have to call AGAIN when I leave here.  Yeah, it’s great to have another thing I have to worry about.  Thanks a lot nursing agency. 

All in all yesterday, not only did I spend a lot of time on the phone with different people trying to get this resolved, I also spent a good portion of the day thinking about it.  So, between the nursing crap, and the dog, how in the hell am I supposed to think about dinner? 

I really wish cooking and preparing for meals came easier to me.  But everything else in my life seems to trump that.  And I tell myself that’s okay.  But, then when Tom comes home and the house is crazy and he’s had a tiring day and he has to make dinner, I feel really bad.  And inadequate as a stay at home mom.   

Okay, must check on Harlie girl.  I will try really, really hard to have another update for you tomorrow.  I have a lot to share!

Thanks!

~Christy

Nursing Woes.

I love it when I hear that some of you are worried and/or wondering what's going on when I don't post for a while. It gives me the motivation I need to make this a priority again.  And it means that I am loved and cared about. So, thank you!

It has been very difficult to find time these past few months.  Honestly, I feel like I am barely keeping my head above water.

I have so much to update you about.  But, I'll start with today.  It was kind of stressful.  I need to start with what happened a month ago.

Last month (actually about 5 weeks or so) I received a phone call from my nursing agency.  As of right now, Harlie qualifies for 10 hours of nursing per day, seven days a week.  Each nurse can only work 40 hours or less per week.  I have three nurses.  One works days for school, Monday through Friday (40 hours).  The other two work evenings and/or weekends when needed.

I also have like 360 respite hours to use however I want to throughout the year.  The only time I use it is if I go over the 10 hours in one day.  So, if on a weekday (when Terri has gone to school with Harlie) we have something to do, I get Dawn or Brandy to come over and respite hours kick in.  It doesn't happen every day, of course.

So, back to the phone call I received... I was told that due to billing issues with Medicaid, the nursing agency was no longer billing for respite hours, so I could not use them.  Now, I am still entitled to those hours - but the nursing agency won't allow my nurses to work them.

While this was VERY annoying, I had full faith that this issue would be resolved soon.  After all, a lot of families and patients rely on these hours.

Well, I've been busy, it's been crazy, and I kind of forgot about it.  But, we have a busy few weeks ahead and I need my respite hours to make everything happen (Christmas parties, shopping, scout nights, etc.).  So, yesterday I call the agency to see if the issues were resolved.

No.  Not even close.

Now I'm frustrated.  And I really don't think they understand (or care) how this affects us.  I need my hours.  Period.  She said she'd talk to the owner and get back to me.

So, I call my case worker with Medicaid.  I left a message.  In the meantime I'm trying to figure out a schedule with my nurse to work on Friday night.

I hear nothing back.  So, I call again today.  Both places.  My case worker with Medicaid is wonderful and she said, "Oh, no.  They cannot do that.  I'll call them."  Awesome.

In the meantime, my nurse said that she was told by the nursing agency that her hours have to be "approved."  WTH?  At this point, I've already figured out to move our plans from Friday night to Saturday night so I don't have to worry about the hours conflicting with Terri's.  So, I call the agency (again).  I talk to this guy who I've never spoken to before.  He said that they want their nurses to work "regular shifts" and he has to know where his nurses are and when they are working.  If I relayed the whole conversation, it would take me an hour to type it.

Here are the highlights:

If they work a shift that was not a shift he pre-approved, then they might or might not get paid.  Yes he said that.  Even if it is within my 10 hours I already am allowed to have.  WTH???  So, if our plans change at the last minute and she works 6 to 11 instead of 5 to 10, she might not get paid?  Are you kidding me???

Back to his "regular shift" comment.  Don't even!  You want your nurses to work regular shifts?  Well, guess what?  You don't always get what you want in this life, Mister!  TRUST ME!  I want a regular life, jack ass!  Cry me a freaking river.  I told him my life is not regular and it doesn't work like that.  And I said, "Isn't it about what the patient needs, not what the agency wants?"

He said that their nurses represent the company and that he needs to know where they are.  Um, they are here for 10 hours a day.  I told him I brought you my nurses!!!  They went to your company to work in my house, with my child.  For SIX years!!!  I think we have it worked out.

I told him that this policy does not protect me or help me in any way.  It is a burden.  I cannot be worrying about calling him every time my plans change.  Our life is hard enough - why are you making it harder???  And (I actually said all of this by the way, I'm quite proud of myself if you want to know the truth) you do realize that I am going to have to look into other nurses agencies, right?  Then he said, "I understand."  WTH???  For real?

The last thing I said was that I did not detect any amount of caring or concern from his end of the conversation.

My only guess is that this company is trying to phase out the Medicaid cases (probably because they don't make enough money) and is doing their best to force me to leave.

While I already started the process of finding another agency (and I know where we are switching to) it will take a couple of weeks to go through the process of hiring my nurses.  UGH!  Which leaves us SCREWED for the whole month of December.  The WORST month of the year to lose any hours!

I am beyond upset and angry.  He made me want to cuss like nobody's business.

And the worst of it????  The worst of it is that I can't do anything rash.  I have to stay calm and deal with this crap.  You know why?  BECAUSE I FREAKING HAVE TO, that's why.  I NEED them.  I need my nurses.  I need them in order to live my life.

And, you know what?  It totally sucks to be a mom and know that I need other adults to help me life my life.  Not just help every now and then.  NEED them to LIVE.

I. HATE. THAT.

I am a strong, independent (well, I can't cook, so that's kinda bad), do-er.  To NEED this "service" is simply heartbreaking.  And it's not just about me.  It's about my sweet little girl.  My sweet little girl who didn't ask for any of this.  Ugh.

Okay, the day got better with an emergency vet appointment for Rooney.  Fabulous.  He's fine now.  Whew!  But I promise I will fill you in with all the details tomorrow.

Thanks for checking on me and thanks for reading my ranting!

xo,
Christy

Random Thoughts and GI stuff

Random thoughts.

A few nights ago, we were getting ready to sit down for dinner when I heard Murphy tell Cooper that Harlie called him weird.  Harlie was in the other room at the time.  Cooper looked pretty annoyed at this information and left the table to go have a word with Harlie.  When he left I said, "Murphy, what are you talking about, Harlie can't even say the word weird."  And Murphy replied, while laughing, "I know.  That's what makes it so funny."

We couldn't help but laugh with him.  Sometimes I think the hard stuff in life gives you a really twisted sense of humor.  

Here's a picture of Harlie doing one of her favorite things.  Feeding Rooney.  That dog dances and spins around when he knows he's about to eat.  

Poor Harlie has had a rough few days.  Without going into too much uncomfortable detail, her GI system is somewhat "delicate." One of her birth defects required anoplasty at one year old.  And because her stuff was a little out of place, we have to be very careful to not let her get constipated. Should be easy on a formula-only diet, right?  Wrong.  

We've actually done okay thus far.  She's certainly had some moments that were unpleasant (for all of us), but for the most part, she's good.  But lately, I don't know what is wrong.  I mentioned the problem to her pediatrician at her well check appointment back in September.  So, I know we must have been having some issues if I even brought it up.  She has been on a daily dose of Miralax for years.  He suggested switching over to prune juice since it is more natural.  And because I tube it, we don't have to worry about her willingness to drink it.  

It took a few days to get the right amount figured out.  But then it was fine.  I also switched her over to the formula with fiber.  Same formula, just with fiber added.  

She gets four cans per day, plus 22 to 25 ounces of water.  But despite this consistency, she is still having issues.  She'll be fine one day, and crying in pain the next.  I don't get it.  

I do think that since she has some overall low-tone issues in her body, that her GI system is likely to be low-tone, too.  But, she's on an all liquid diet - with the same amount of fluids and Miralax (or prune juice) daily.  What is going on?  

Last Monday it was so bad that she couldn't go to school.  She missed the bus because as soon as I got her up to get ready, she sat on the potty, and wouldn't get off.  I had to send the bus driver on, without her.  She was in and out of the bathroom all day, with no results.  I think it was the next day or the day after that when she was fine again.  

Then, Monday (yesterday), she spent over two hours in the bathroom at school.  The whole class went to lunch and recess while she was stuck in the potty.  I had to pick her up early that day.  And I know for a fact that she went just fine on Saturday night.  She got her juice every day and by Monday she was crying while trying to go?  Makes no sense.  

I called her pediatrician and said that her missing two days of school for this is not normal.  He agreed.  He said to switch her back to Miralax to see if that helps.  She got a full cap yesterday and today and she was crying on the potty tonight with no real success.  Ugh!  

I am going to start writing it all down so I'll have some better info if we end up having to see her GI doc.  

So, changing subjects... every month a respiratory therapist has to come out to the house to see Harlie, check her sats and heart rate and check her equipment.  Most of the time it is someone who has already been out to the house, so they already know where everything is so I don't follow them upstairs to her room anymore.  

Well, last night (Monday) I noticed that Harlie's stationary suction machine in her room was backwards on her dresser.  I thought that was a little odd.  I know she has to check it and all, but shouldn't you put it back the way you found it?  Especially considering the way she left it, there was no way to turn it on from that angle.  I must say that I was a little annoyed.  

Then I went to use the machine and I swear that it's not working as well as it did before her visit yesterday!  It seems to have less suction power.  Tom fiddled with it tonight and couldn't get the suction power up.  So, I'm going to have to call tomorrow to find out what she did to it.  Now I'm really annoyed.  I know some RTs get hung up on the pressure number, but I know my kid and I know what she can handle.  So, don't go messing with my stuff.  

Of course I'm assuming that she messed up adjusted it.  If she didn't and this is all my imagination, then I apologize to her.  But I really think it's way weaker than it was yesterday before she came over.  For the record.  

Okay, must go now, totally falling asleep while writing... I apologize now for any and all typos.  I am so tired I am not going to proof it.  

Thanks!

Christy

Happy Thanksgiving, and updates.

It's Thanksgiving Day.  I should be writing a mushy post about how thankful I am for so many blessings in our life.  And I am thankful.  But, I'm thankful every day for that stuff.  Seriously. Not a day goes by that I don't think about how different our life could be if we weren't so blessed.  So, spending one day to write about it just doesn't mean much to me.

Plus, if you haven't guessed from my serious lack of posting, I'm kinda in a funk.  And I think it's a worry-funk.  I find myself seriously worried about all kinds of things.  Like the state of our country, our economy, the potential of what's happening to seriously affect Tom's job and our livelihood, Harlie, Murphy, Cooper, etc.  It's terrible.  I am not a worrier by nature - so this is a new change, and one I'm not happy about.

So, to bring you a little up to speed... here are some updates:

BAHA
A few weeks ago Harlie had an appointment with her local ENT to see where we are with her bone anchored hearing aid.  Despite knowing the overall time table, I still had my hopes up that we could be on the fast track.  I don't know why I do that to myself.  But as I've said before, hope is a funny thing.

She had the first surgery August 3rd.  The second surgery is usually done three to six months later.  The titanium implant has to go through ossification, where the bone pretty much accepts and grows around the implant to secure it in place.  Our ENT wants to give her the full six months to ensure that this process happens successfully.  While I understand (of course) I was still disappointed.  So, we will schedule the next surgery for sometime in February 2013.  Then we will have to wait at least six weeks after that for us to be able to actually use it.  It will take that long for everything to heal enough that it can handle the pressure of clicking the hearing aid in place.  I know that time will be here before we know it, but sometimes it feels like forever.

Plus I know that I have a lot of hope that having this bone anchored hearing aid will completely change her life for the better.  That somehow she will hear SO much better that it will improve her life, and our life, immensely.  I have a sneaking suspicion that I'm setting myself up for some more disappointment.

Trach Status
So, a few weeks ago, I did my own little sleep study.  As you might guess, the results were far from ideal (otherwise I'd be happier).

She fell asleep with the cap on just fine, while laying on her back.  Her sats were good - bouncing back and forth between 89 and 90 (which is good for her).  Within just a few minutes, her breathing became very noisy.  I turned her over on her side to see if that helped.  It did not.  The noise sounds similar to snoring, but much worse.  You can totally tell that her tongue is obstructing her airway.  I stayed strong and stood by, hoping that somehow she could control it and get past it. I tried to focus on her pulse ox to let her good numbers keep me strong.  There was one moment that she didn't breathe for a second or two, she stirred a bit but didn't awake and then her noisy breathing continued.  After about ten minutes or so, my stomach was in a knot and I couldn't take it anymore.  I removed her cap and her breathing relaxed and she was so much more comfortable.

I would say that her third jaw reconstruction was NOT a success as far as function goes.  Devastation does not adequately describe my feelings.  Writing about it earlier was not an option.

So, I e-mailed her oral surgeon in Boston the next day.  I told her about our "sleep study" and asked her when Harlie would be ready for the next surgery (I'm assuming it would be jaw distraction).  She said that she wanted her to have a real sleep study and if she failed that one, that we could do the next surgery this summer, 2013.

I then e-mailed her ENT in DC and brought him up to date.  I explained that we need to have the sleep study ASAP because it takes months and months to get on the surgery schedule (last year we scheduled her surgery in February and the soonest we could get in was August 24th!).  We need the results in time to get on the books earlier in the summer.

Our capped sleep study is now scheduled for January 13, 2013.

At some point (okay, on my mind constantly) I need to think about this.  Should we proceed THIS summer?  Is it too soon - emotionally, I mean?  Is it worth ruining a whole summer for her?  Jaw distraction (which is what I am assuming she'll have to have) will not be a fun, easy or quick process.

And I have to ask the question - how many surgeries will it take?  When do we give up?  Will she ever be decannulated?  I can't believe she is six years old, has had three major jaw reconstructions, and she is STILL trached and I am asking these questions.

I would never have guessed we would be here six years ago.  Again, I'm reminded of how funny hope is.  It is amazing that it returns, despite setbacks and/or proof that it shouldn't be there at all.  But I am unwilling to live without it.  It keeps me going.  It makes life easier to live.  And I still hope that January's sleep study will pleasantly surprise us.

Jaw distraction - for those that don't know - involves cutting the bone of the jaw on both sides, putting screws and rods on either side of the breaks and then turning the screws to extend the breaks, each day. With every break, new bone grows in its place.  Each day the screws are turned again, the new bone breaks, and newer bone grows in its place.  This continues for a while (I don't know how long).

Jaw distraction is not something I hoped for.  In fact, it's something I've hoped to avoid.  I really, really hoped that jaw reconstruction, would do the trick and that distraction would never need to happen.

Jaw distraction can be done internally, or externally.  Both techniques come with its pros and cons.  Both leave scars that are undesirable (plainly seen on the face, or felt in the mouth).  Jaw distraction was not an option before.  Her bone was not connected prior to her jaw reconstruction in August.  She now has bone to distract, whereas in the past, there was none.

When I think about all that goes into this I still can't believe that wanting her to be able to breathe through her nose and mouth and learn to talk and eat, is such a pipe dream (or a set of pipe dreams?).  Who the freak would have known???

About her being Non-Verbal
So, a few weeks ago, we had some friends over.  One of them was in the kitchen cooking with Tom.  Harlie was on the computer.  She pointed to the screen (which was on You Tube) and she signed the letter "M".  I asked her for more clues.  She then signed the letter "3".  I still didn't know what she wanted.  She was saying something that sounded like "hm hm hm har" or "hm hm hm heart".  Nope, still didn't get it.  I went and got her communication device.  I put it in front of her (while telling her I didn't understand her - and asking Tom and Mike for help in figuring this out) and she pressed the button for "animals" and then pointed (not pressed) to the button for "zoo".  I was frustrated at this point and clearly didn't understand why she would point to a button instead of pressing it.  Just press it already!!!  She finally pressed it and then pressed "lion".

So, here were the clues:

M
3
some word that has 4 syllables, and ends in a "har" sound
Zoo
Lion

And I'm embarrassed to say that I STILL didn't get it!!! But neither did Tom or Mike, so I wasn't alone.  I finally gave up and felt so horrible and sad and frustrated that I left the kitchen table.  I happened to walk past the dining room and I just happened to spot a DVD laying on the table.

It was Madagascar 3.

A-HA!!!

I grabbed it and took it back into the kitchen and asked Harlie if that is what she wanted and it WAS!!! Hallefreakinglujah!!!

Just minutes later Mike asked to see the necklace I was wearing.   It reads, "A mother knows the words her child cannot say."

I wish.

It kills me that her asking for freaking Madagascar 3 took so much time and energy - for the both of us. Especially when she was actually trying to say "Madagascar 3".  Two freaking words!  And it really illustrates the difficulty in teaching her new things (much more complicated school-related things).  Despite how smart she might be.

The other day I think her leg fell asleep.  I, of course, don't know for sure as she cannot explain what she feels or thinks.  If her leg felt funny, she could not ask me what was going on or why it was happening.  Nor could I try to explain it to her.

So many conversations lost.  So many learning opportunities lost.  So many moments lost.  It kills me.  Every day this happens and I know it.  I am so, so thankful for all that she can do, yet I feel such a sadness for all she wants to do, but can't.

I want to end with something positive.

Today I got to sit at a table with 20 people (give or take).  And I got to laugh with my husband, kids, nieces, nephews, siblings (and their spouses/girlfriend), aunt, a few friends and parents.  I am thankful.  Life is hard.  No doubt about that.  I worry.  A lot.  I love.  A lot.  I laugh.  A lot.  And I hope.  A lot.

Happy Thanksgiving my friends!
Love,
Christy xo

Update and Halloween pics

Wow.  Another long absence from my blog.  So here's what happened in a nutshell... I got sick with some lung crud and was useless for about two to three weeks.  In that time, I got amazingly behind in all the administrative tasks of my life.  I mean, I was already behind to begin with!  And surprisingly, it takes a substantial amount of time and energy to blog about my life.  So, blogging while being sick wasn't an option.

I tried to be horizontal as much as possible (while being a stay at home mom).  If only I could call in sick...  And I really tried hard not to talk unless it was really necessary.  My throat felt horrible!

But, I'm all better now.  Health-wise, I mean.  But I am so behind in all my paperwork crap and making appointments, etc.

I've also developed this weird problem... I have to have the house neat and clean in order to sit down and do anything (like blog, write thank you notes, pay bills, etc.).  You can probably see where this is going...

By the time I get the house neat and clean, Cooper gets home from school at noon and he just messes it all up again.  I have to make him lunch, clean it up, feed the dog, walk the dog and then Harlie and Murphy get home. And they make an even bigger mess.  So, I never actually get to stop and do what I need to do.

I just can't focus when the house is a mess.  It drives me crazy.

Anyway, to organize my thoughts for a sec, here's what I want to blog about in the near future:

We Heart Harlie 5k (back on September 30th!)
Halloween
School pictures
Where we are with the trach/sleep study
BAHA update
Richmond Half marathon
Wonder by R.J. Palacio book review
Photo slideshow

Well, let me just get Halloween done now.

First, my little project...

Take a beautiful pumpkin

and paint it black. Twice.

Then sprinkle with glittery stuff.

Then add eyes, a mouth and six very large
pipe cleaner legs.  Isn't he a cutie?!
Thanks Martha Stewart kit at Target!

Harlie got to put on her costume at school for a character parade.  Terri (her nurse) took this photo of her.  There is something about it that I love.  

Harlie, Cooper and Murphy (aka Power Rangers)

Me in my Halloween wig, and Harlie.

So, I have to admit that I wasn't a huge fan of Harlie's costume.  But she picked it last year and I bought it last year.  But it was WAY too big for her, so I talked her into being a bee, and exchanged the costumes.  This year when we took the kids to the store, she picked that darn cat costume, AGAIN!  My niece Maggie was with us at the time and said, "Well, you might as well let her get it out of her system."  Wise words from a 20-year old.  It turned out pretty cute, and she was happy, so it's all good.  

And of course, Rooney had to get in on the fun...

Harlie gave him the bag.  He's such a good pup.  Here he is again after Harlie got to him...

Okay, that's it for now.  Hopefully I'll be able to update again soon!

Thanks!

~Christy

Camping

A couple of weekends ago, we went camping.  The whole family.  For the first time ever.  We went with some friends, Heather and Neal, Mike and Marcy, and their kids.  Tom did all the planning, along with Neal and Mike.  I just packed our stuff up and rode along.

Packing took a lot longer than Tom wanted (hey, I had to run 10 miles that morning, so I got a late start and then was moving a little slower than normal) so we got on the road later.  Which meant that we arrived to the campsite later.  Like after dark.  Exactly what Tom was trying to avoid.

The campsite was just a few miles from Natural Bridge, Virginia, about two and a half hours away.  It was a group campsite.  But, only one group could reserve it.  And that group was us.  Which was awesome because we didn't have to worry about the kids bothering other people or being too loud, etc.  It was perfect.

But, getting there in the pure darkness was a little unsettling.  First of all, I'm a total chicken.  And I will admit that I've probably watched a little too much true crime TV.  Anyway, we arrive at this campsite at the end of a long and windy - and scary - road.  You have to pull off the road onto a gravel road, open the gate, and drive a little more till it ends.  It was super creepy.  And it was cold.  And really dark.

So, when we all got there (we were following each other), I stayed in the truck with the kids and the dog, while Tom got out and figured out what he wanted us to do.  But, the kids (including the dog) weren't having any of that and fussed like crazy to be let out.  So, I gave in and let them out.  In the meantime the guys had flashlights and were trying to figure out where to set up camp.

No lie, like four minutes passed - FOUR MINUTES - when I heard Cooper cry.  I knew instantly that it wasn't just a whiny cry - it was a hurt cry.  Really?  Tom picked him up and looked him over with the flashlight.  Cooper had cut his face on the metal gate/sign that was at the end of the gravel drive.

Awesome.

We inspect the damage and it's very clear that the cut needs stitches.  I packed a first aid kit and just happened to put in some butterfly closures, so we tried those to see if they would do the job.  At least till morning.  They didn't work.  It was too close to his mouth, which was moving (non-stop, as always) and his nose was running, so that didn't help, either.

But, there was really no way to get him to the hospital that night.  All three guys were needed to set up the tents and start the fire, etc.  It was cold and it was late.  The only real solution would have been for me to take Cooper.  But, there was no cell phone service there.  So, if I got lost (which would surely happen) we would be up a creek.  Plus, that would completely change our adult to kid ratio (plus a puppy).  The bottom line was that it wasn't life-threatening.  We stopped the bleeding.  And a little tiny scar doesn't bother me.  My only concern was infection - but he's had all his shots, so I didn't think there was much we could do in that area.  So, we decided to just wait till morning to deal with it.  I actually feel sorry for my boys.  I'm a much different mom after all we've been through with Harlie.

So, we survive the night.  Although I slept very little.  A pack of wild, barking dogs on our way to kill us all, woke us up.  Funny how your mind plays tricks on you when you can't see more than 20 feet away.  And it was like 30-some freaking degrees that night.  It was COLD!  And when I packed, I packed all the kids' warm clothes, but somehow forgot most of mine.  Typical.

At any rate, morning (or daylight, rather) couldn't come fast enough for me.  I woke up with matted hair at the back of my neck from all my looking to my right, looking to my left, thinking, "What's that?" and "What was that?!"  ACK!

The campsite was a lot less scary in the daylight.  In fact, it was really, really nice.  After breakfast, we cleaned Cooper's face and we decided Tom had to take him to a hospital for stitches.  I might have been comfortable waiting the night, but I wasn't comfortable waiting another whole day or two.  So, Tom, Neal and Cooper drove towards civilization till they got cell phone service and then found the nearest ER.

When there, the doc said he needed three stitches.  Tom asked him if he could use Dermabond instead.  The doc said, "I could have if I had seen him within eight hours of the accident."  Ouch!

Tom said Cooper did great, all things considered.  Here's a picture after they got back.  Oh, and it was taken with my dying iPhone because... take a guess... we forgot the freaking camera!!!

Oh, and the best part is that his school pictures were scheduled for the following week.  Isn't that always the way???

After they got back to the campsite with Cooper, we said, "tag, you're it - you've got the kids." And Tom said, "Christy, I just spent three hours in the hospital with Cooper, you have NO idea what that's like!"  And yes, he was joking.  But we all thought it was hysterical.

Harlie did really well.  We barely had to use the suction machine.  We tried to go on a little hike down the creek - but it was very rocky and hard for her to walk.  And there was no way I could carry her safely.  So Heather took the rest of the kids and I hung out with Harlie.  Here's a picture Heather took with her phone (turns out all of us forgot our cameras!)...

Seriously, how freaking cute is my dog?!?!?  Rooney is the cutest thing EVER!  And he was such a good pup at the campsite.  He always stayed with us and loved running in the leaves with the kids.  It was so much fun to have him with us.  And he fit very nicely in our sleeping bag, too.  He's very cuddly.

After a full day at the camp, the second night was a lot easier than the first.  We were able to get all layered up for the night early, so we were prepared before bedtime.  Plus, it wasn't as scary.  Although, somehow, I woke up with matted hair - again.  It was also not as cold the second night.

The guys did great with all the food preparations so we ate well.  And of course we roasted marshmallows, and all that good stuff.  Here are some cell phone pics...

Our camp.  We decided that next time we'll spread out a lot more.  

Because look at all this space!!!

Somebody's loving life...

Harlie, Murphy, Mallory, Griffin, Cooper and Kaden

We will definitely go back.  We really had a lot of fun.

Thanks!
~Christy

Boston, Post-Op Appointment

Harlie's follow-up appointment in Boston was Friday, October 19th.  Our flight was at 6:30am, which meant we had to be there at 4:30am.  Sounds ridiculous, I know.  But, it takes us a while to get through security, so we have to give us extra time.  So, in order to be there at 4:30am, we had to leave the house by 4:00am, which meant we had to wake up by 3:30am, and that's cutting it close.  I stayed up late the night before doing everything I possibly could to set us up for success.

Once we told Harlie we were getting on a plane the next morning, she was super excited.  She immediately went and got some toys she wanted to take with her.  Another milestone in her development!

So, when we went to wake her up in the morning (usually a VERY difficult task) she hopped right out of bed!  So, off we went and on schedule, too!

I can't remember if I've already told you the details of getting through security, but since Harlie has a pacemaker, she can't go through the normal scanning procedures.  And since she's a minor, she can't be patted down.  So, they have to call some boss somewhere and give him the low-down of the situation (where are we traveling, who are we traveling with, etc.).  This usually takes a while and we have to stand there waiting in the middle of the lines, while everyone goes past us through the walking scanner things.  After a security person comes over and talks to me and they get a female security guard to check Harlie on the other side, they let us go through.  So all of our stuff goes through the scanner, and Tom and I go through the scanner while Harlie gets pushed through a gate and we go off to the side after that.

They check all of our stuff again, by hand and they test her stroller and her hands.  The past few times her hands have come back with some alert or something.  So, then they have to test my hands and/or my clothes (depends on the airport and the security personnel).  Apparently her meds can set off the alarm because medication comes through your pores or something.  Kind of comforting to know the thing is that sensitive.  But, it adds another step and more time to our security process.

Then they make a copy of my driver's license and our boarding passes (just me and Harlie's though, never Tom's, weird).  The boss they had to call comes over and asks if Tom or I set off any alarms and then he ask us the same questions as earlier.  So far he's apologized for taking a while to get there.  Then they come back with my driver's license and boarding passes, and say thank you for being so patient, have a nice flight.  I have to say, every single time, they have all been very nice and professional.

So, as you can see, that takes a while.  So, we have to plan in extra time.  The flight was fine.  Harlie fell asleep, which is crazy strange.

But, she did have to get up really freaking early, so it was understandable.  And a welcome break for me!  By the way, forgot the camera.  So I had to use my phone.  You're going to notice that this is a recurring problem. Ugh.

My mom downloaded the book Wonder for me to my Kindle.  I haven't read a book in years (since The Help, which I loved), but I really want to read this one.  So, I pulled out the Kindle and started to read it.  And within minutes I was crying.  I knew what it was about (a 10-year old with a craniofacial syndrome, written from his point of view) but did not expect it to affect me so... much?  deeply?  I don't know, it just got to me.  I think what got to me the most, at that point (you know, page three?), was 1) that he could talk about how he felt to his parents and sister and he could ask questions and have conversations about what he had to go through (something Harlie can't do with us) and 2) how brave he has to be all the time.

I wanted to stop reading it.  But, I wanted to keep on reading it.  So, I pushed through and tried to keep reading AND stop crying.  It got so bad I needed a tissue or a wipe or something.  So, I had to ask Tom for a wipe from Harlie's bag.  When I got his attention and he looked at me, he did a double-take and was like, "What the hell is wrong with you?!"  And when I told him it was this book he rolled his eyes and laughed at me.  Well, that answers that, I'm totally going to make him read it when I'm done.  And I want to be there to watch him cry like a baby, too.

I haven't finished it yet, but it is a great book so far.  I highly recommend it - especially to parents.  There is a part in the book that reminded me of my friend, Ann.  A teacher at the main character's school teaches the students about precepts and the first one is "When given the choice between being right or being kind, choose kind."  But, even though it is really good, it is still really hard for me to read.  It makes me so sad that he has to be so brave all the time.  I can see a full post about this book in the future.

Anyway, once we landed in Boston, we took a shuttle to the hotel to drop off our luggage.  Oh!  And that reminds me, some of you may remember that during our last trip to Boston, both of our suitcases broke.  So, we had to buy new luggage.  Given the color choices of this particular luggage that Tom picked out, I opted for the green.

Well, the color green it is, and the color green it shows on the website are two totally different shades of green.  It is such an ugly color green - like pine green or something.  It reminds me of a vest (outerwear thing) that Tom and our friend Scott had and kept on trying to give to each other.  So, if they were visiting each other, one would sneak it in the other's backpack or they'd mail it to the other one.  Because neither wanted it since it was such an ugly shade of green.  And it's that shade of green.

Anyway, it rolls really nice, so that's good.  So, we took the free shuttle to the hotel near the airport.  We decided to stay near the airport so we didn't have to wake up so freaking early the next morning.  I didn't want to do that two days in a row.  And thanks to our wonderful neighbor, John, we had a nice hotel in which to stay.  Him and Jackie really spoil us!  We couldn't check in since it was so early, so we just stored our luggage there and took a cab to the hospital.

We got there early, and had breakfast.  Then headed up to see her docs.  The hospital there has a robot-thingy to deliver medical records????

The front looks like the front of a train.  It just goes by itself down the hall and then gets on the elevator.  It cracks me up every time.  I'm so easily amused!

The appointment went really well, I think.  Dr. Padwa was really, really happy with her alignment and her range of motion.  She was also happy that she has stopped drooling and is swallowing again.  She said she knew she would get it.  Seriously, she said that "it doesn't get any better than this."  I feel bad that we can't fully appreciate their skill and talent.  I will in the future, when Harlie can breathe without the trach.  But, I just don't look at Harlie the way they do.  They can see just her face, her jaw and see details that I can't see.  I just see... Harlie.  I can't really see all the details.  She pulled up some photos that I sent them prior to surgery and showed us what she was talking about.  Her chin used to be under her right eye (in vertical alignment) and now it's in the middle, the way it should be.  I don't know how I didn't notice.  Her teeth are definitely aligned.  But she has an open bite, so it still doesn't look totally "right."  She said that's just the shape of her top jaw - her back teeth touching isn't what's preventing her from closing her mouth properly.  She said that they can fix that (or make it better?) - but they can't do it until she's done growing.

So, they were able to move her jaw over a lot, and they moved it forward some (although that I cannot see).  They will definitely have to move it forward some more, but we don't know when that will be.  The rest of her face will grow faster than her jaw.  Dr. Padwa said that they will probably do jaw distraction (something I was hoping we could avoid) next time.  That is when they break the jaw and put screws and rods on both sides of the break.  Every day we turn the screws to make the rods extend in length.  This forces the bone to heal, and make more bone.  Each day when you turn the screws, it essentially breaks again and forces more bone to grow in its place.  It's not something I'm looking forward to, obviously.  And it wasn't even an option before - since she didn't have enough jaw bone.  Now that they've given her some bone (taken from her leg) they will have some bone to work with.

Here is an x-ray they took on Friday (you can see all the screws in her jaw and one in her forehead, between her eyes, from her first two jaw surgeries, which were a whole different kind of surgery).

So, in summary, the great news is that her jaw hasn't fused together, preventing her from opening or closing her mouth.  And her alignment still looks great.  In fact, Dr. Padwa said that it is "picture perfect."  I fully expected some sort of bad news - just because that's the way it usually is.  So, when she was so happy with it, my brain went blank and I had nothing to ask or say.  Ugh!

Dr. Labow came out of surgery to see us.  He agreed that she looks great.  So, we don't have to go back until next summer.

Dr. Labow, Dr. Padwa and Harlie

So, where do we go from here?

We need to see her ENT in DC for a bronchoscopy to see if we gained any space in her airway.  And then we'll need to get a capped sleep study done.  I don't think doing this in the winter will be worth it.  They usually don't like to decannulate (take the trach out) during the winter/sickness season.  It can be very difficult/risky for a newly decannulated kid to be sick while they are still getting used to breathing without the trach.

We really can't even think about that right now.  If she can't be decannulated after this surgery, it will be devastating.  And it will mean more years with the trach, something I just can't think about right now.  I just want to focus on her being happy and healthy.  And as long as we have hope - I can live with it.  I'm not ready to have that hope squashed.  So, I don't know when we'll schedule those things.  I guess I'll email her ENT in DC and ask him what he thinks.

We'll also have to get a dental/orthodontia plan.  She has a local dentist - and I love her.  But, she doesn't have an orthodontist.  And I'm thinking her orthodontist has to be one in Boston who can work with her craniofacial team.  But, that does make for a lot of traveling in the future.  So, I don't know what we'll do.  I know we're probably not going to do anything for at least another year (unless something comes up that we can't put off) so I'll probably put that on the back burner for now.

The worst thing about the appointment was them trying to get pictures of her.  What a mess!  She could not sit still for anything.  And there was a terrible delay from them clicking the button and the camera taking the picture.  It was a frustrating disaster.

Trying to get her lined up right.

Hello Goofy Girl.

Earlier silliness.

Some x-ray thingy.

Here is a picture of her at the airport on the way home.  Notice her chin and the alignment of her face...

Now look at this picture taken just before her surgery...

Now even I can see that change!  Great job, Docs!!!  Now why couldn't she just hold still like in this photo for crying out loud?!

Anyway, as we were leaving, Dr. Padwa turned around and said, "We just need to get that trach out.  Because she's beautiful."  Awww, thanks Dr. Padwa!

So, a great follow-up appointment.  Now I can focus on the other appointments I have to make.  We need to see her ENT here to see when we can do the next step in getting her bone anchored hearing aid going.  She sees her local cardiologist on Wednesday to have her pacemaker checked.  And I think we need to think about getting her back to DC to have another heart cath done to close her fenestration (a heart thing that is usually closed years before this - but we've had other things to focus on).  I bet I could just schedule all of her DC stuff for one big stay or something (sleep study, bronch, heart cath).  That would certainly be better than having to make separate trips.

Anyway, that's it for Boston for a while I think.  I had no idea it would be this "simple" - I fully expected more complications.  Knock on wood.

Okay, I'm on a roll now.  I hope to have another post tomorrow!
Thanks!
~Christy