Quick Update

On Monday, Terri came in and I was still in bed.  She started her assessment of Harlie (who was also still in bed) and then she poked her head in my door.  She said, "Harlie is on four liters of oxygen - and she's only at 85%?"  I said, "Yes."  Four liters of oxygen is a lot.  She looked concerned.  And then she left.  A few minutes later she came back and said that her trach had some bloody secretions.  And that she thought maybe she should go to the doctor.

But, I was in no condition to take her to the doctor.  Or the ER, which is where I knew she'd end up.  Well, right at that time my friend Jennifer called.  And I told her what was going on.  And wouldn't you know that she offered to come over here and drive Terri and Harlie to the doc and ER for me, so I could stay here and rest?  Wow!  So, my Mom came over to hang out with Cooper downstairs.  And Jennifer and Terri took Harlie and I stayed upstairs and slept.  Crazy, huh?  And I crossed my fingers that there would be no reason to admit Harlie to the hospital.

They got back later on that afternoon, with Harlie, luckily.  Terri said that Harlie was a mess until they got to the ER.  She said that once they were there Harlie got herself together and smiled at everyone while playing on the iPad, looking all innocent like nothing was wrong.  I guess she realized where she was going to stay if she wasn't on her best behavior.  She didn't cough up any blood or anything.  She said the doctors were like, "So, what brings you here today?"  I had to laugh.  She has totally done that to me before.

Her x-rays were good (which is so bizarre considering her sats are so low!).  And they tested her for the flu and her test came back positive for Influenza B.  No surprise there.  See? I told you we all had the flu.  But, she's been on Tamiflu since Friday.  So, at this point, there's nothing we can do but treat her symptoms.

Today is Friday and I am definitely feeling better.  And I can't tell you how good it feels to be back in the land of the living again!  I might even try to run a little this weekend. I'm not back to 100%, but I'm getting there!

Harlie is still on four liters of oxygen.  And her sats still go to the mid 70s when she's off the oxygen.  But, she seems happy.  Of course she's pretty much confined to the couch since we've been leaving her on trach collar (humdified air with oxygen) to help keep the oxygen from causing more mucus plugging.

I have to tell you that I am really over her not being well.  She has been sick all but three weeks since Christmas.  And I miss a healthy Harlie.  It's been so long since she's been energetic and playful.  And I'm sure she misses being healthy, too.  With any luck, she will recover from this flu and this will be IT.  I just had to reschedule that darn sleep study.  Again.

On a good note, she is doing great with her BAHA.  I'll have to take a picture for you so you can see it.  But, now the processor just clicks right on her head.  It's so cool.  She's still sensitive and fights putting it on for a while.  I usually have to withhold something she wants (like the TV or iPad) until she lets me put it on.  It only takes a second, but you do have to press a little hard, so maybe it still hurts a little.

Anyway, while wearing it, for the first time EVER she actually asked me to turn the volume down on the TV!  Can you believe that?  And then while using her communication device, she turned the speaker volume down.  I'd say that's a pretty good sign that she's hearing better with it actually being bone anchored now.  Woohoo!  Now if only we could get her back to school so we could see it in action.

On Thursday night, Paige (Paige Stevens Photography) came over and did a quick little photo shoot with Harlie.  This was our third appointment - every other time Harlie was too sick.  We took Harlie off the oxygen for the photos - and just let her hang out in the 70s.  You wouldn't even know it, either.

Harlie was so good!  She was completely cooperative in every way!  I just couldn't believe it.  She is really growing up.  She no longer squnches her face all up when she smiles.  Wow.  What a difference that makes!

Paige is so good, too.  I really can't wait to see these photos.  We did it to get a photo of Harlie for the new flyer for the 2nd Annual We Heart Harlie fundraiser.  Lynda is already busy making big plans.  So, save the date!

We Heart Harlie

May 18th, 8am to 11am

at Glen Allen Elementary School

And this year there will be a 5k, too!  

There will be the raffle like last year.  So, if you have a service or product you would like to donate, just let me know!  We are working on getting some cool printed t-shirts, too.  I know a lot of people wanted to order shirts, but we just couldn't keep up with the demand.  So, this time, we'll have them on hand.  More on all that as things develop...

Tomorrow (Saturday) is Cooper's first soccer game.  I have to admit that I'm a little worried.  The other day Cooper and Murphy were kicking the soccer ball in the backyard and when Murphy kicked the ball, Cooper started crying.  Oh boy.  Does that mean he's going to spend the whole game crying?  Guess I should prepare myself to be pretty embarrassed.

That's it for now.  More later!

Much love,
Christy xo

Wonder

So, I mentioned a while ago that I wanted to tell you about the book, Wonder, by R.J. Palacio.

I read it months ago.  But, as my life is, I never had the time to write about it.  Well, Murphy and I started reading it about a week or so ago.  Which is kinda weird because we started it about a week before he came home and said he was supposed to read a chapter book (that wasn't a Diary of a Wimpy Kid book) for school.  Awesome timing!

Anyway, here's the gist of the book in brief:

It's about a 10-year old boy named August.  He has a craniofacial syndrome that has him looking pretty horrific.  In fact, he says, "I won't describe what I look like.  Whatever you're thinking, it's probably worse."   Because of his medical challenges, he's been home schooled his whole life.  In the book, he goes to school for the first time and enters the 5th grade.  He has a wonderful mom and dad and an older sister, named Olivia (or Via, for short).  The book is written from August's point of view for the first part.  Then his sister's point of view, then his friend's, etc.  It's pretty awesome.

The background of the book is that the author was at an ice cream place years and years ago, with her two boys who were young at the time.  A little girl with a craniofacial syndrome and her mother came in, and the author, trying to prevent any embarrassing remarks from her boys, high tailed it out of there.  In her defense, she really was trying to be sensitive.  Unfortunately, the little girl and her mom, knew very well what the author was doing and as the author walked away she heard the girl's mom say to the girl, "I think it's time to go home now."  Apparently, that moment really affected her.  She was not proud of the way she handled the situation.  And she was filled with regret.  Years later - she wrote this book.

One interesting note - I read an interview with the author and she was asked how come she never wrote from the mom and dad's point of view.  Her response was that their perspective would be too heavy for the book.  Amen.  I know that to be true.

I have to say that I am SUPER impressed that someone who doesn't have a child with special needs could be in touch with so many emotions that we (a family with such a child) feel.  I really could talk forever about this book and how I feel about it.  But, I won't.  You're welcome.

However, Murphy and I were reading it Tuesday night, and while I was reading this chapter, it took everything in me to stay strong and not burst out into tears.  I just have to share it with you...

This is Via's (August's big sister) first time speaking in the book.

A Tour of the Galaxy

August is the Sun.  Me and Mom and Dad are planets orbiting the Sun.  The rest of our family and friends are asteroids and comets floating around the planets orbiting the Sun.  The only celestial body that doesn't orbit August the Sun is Daisy the dog, and that's only because to her little doggy eyes, August's face doesn't look very different from any other human's face.  To Daisy, all our faces look alike, as flat and pale as the moon.

I'm used to the way this universe works.  I've never minded it because it's all I've ever known.  I've always understood that August is special and has special needs.  If I was playing too loudly and he was trying to take a nap, I knew I would have to play something else because he needed his rest after some procedure or other had left him weak and in pain.  If I wanted Mom and Dad to watch me play soccer, I knew that nine out of ten times they'd miss it because they were busy shuttling August to speech therapy or physical therapy or a new specialist or a surgery.

Mom and Dad would always say I was the most understanding little girl in the world.  I don't know about that, just that I understood there was no point in complaining.  I've seen August after his surgeries: his little face bandaged up and swollen, his tiny body full of IVs and tubes to keep him alive.  After you've seen someone else going through that, it feels kind of crazy to complain over not getting the toy you asked for, or your mom missing a school play.  I knew this even when I was six years old.  No one ever told it to me.  I just knew it.

So I've gotten used to not complaining, and I've gotten used to not bothering Mom and Dad with little stuff.  I've gotten used to figuring things out on my own: how to put toys together, how to organize my life so I don't miss friends' birthday parties, how to stay on top of my schoolwork so I never fall behind in class.  I've never asked for help with my homework.  Never needed reminding to finish a project or study for a test.  If I was having trouble with a subject in school, I'd go home and study it until I figured it out on my own.  I taught myself how to convert fractions into decimal points by going online.  I've done every school project pretty much by myself.  When Mom or Dad ask me how things are going in school, I've always said "good" - even when it hasn't always been so good.  My worst day, worst fall, worst headache, worst bruise, worst cramp, worst mean thing anyone could say has always been nothing compared to what August has gone through.  This isn't me being noble, by the way:  it's just the way I know it is.

And this is the way it's always been for me, for the little universe of us.  But this year there seems to be a shift in the cosmos.  The galaxy is changing.  Planets are falling out of alignment.

~~~~~~~~

So, after I finished the chapter, I paused.  I asked Murphy if he understood where Via was coming from.  Of course he agreed.  And then he said, "Like you missed my concert because you had to go to school with Harlie."

Yes.  Yes, that just happened like two weeks ago.  He went on to tell me, "But Daddy waved at me between every song.  And he videotaped it so you could see it, too."  Break.  My.  Heart.

Murphy asks for help with his homework.  And he definitely needs help with projects and stuff.  But, I will say, that he doesn't complain.  He never has.  He has never once said anything about the amount of attention that Harlie gets vs. the amount that he gets.  Not once.

There are SO many challenges when you have a child not just with special needs - but who's medically fragile, as well.  There are so many, it's hard to ever try to describe it to someone who doesn't live the life.  Not one family member is spared from heart ache.  For yourself.  For Harlie.  It's just so freaking complicated.

I'm so thankful to have this book to open up a bunch of really important conversations between me and Murphy.  Honestly, I think this is a fantastic book - even if all of your children are healthy and beautiful (you lucky dogs).  It teaches kids about kindness and the importance of talking to parents about stuff that goes on at school.  I will say that last night Murphy didn't want to read it.  He said it was getting kinda sad.  Which it certainly does - and I would assume even more so for us, since we kinda feel like we're reading about our life, sort of.  But, I told him what he's sad about in the book right now, gets better.  I think the book was written for kids, too, so it doesn't stay sad for long.  So, we'll pick it up again tonight.  Anyway, I highly recommend it.

On the Harlie front, she's freaking sick again.  I had turn on the oxygen while she was sleeping.  So, she hasn't been to school since Monday.  We had her IEP meeting yesterday.  And she has her follow-up appointment from her BAHA surgery this morning.

More later!

Thanks!
~Christy

Second Stage BAHA surgery done.

So much to tell, so little time....

First, I have been unable to blog because I hurt my back.  I didn't do anything really.  It just gradually started to hurt, would get better, then worse, etc.  This has lasted about two to three weeks.  It's my lower back.  Last weekend (not this past weekend) I ran 12 miles and it was fine.  The next several days, it was fine.  But, after sitting at school with Harlie on Thursday, the pain returned - in full force.  By the end of the school day, I could barely move.  And that's no joke.  I was hurting.

Friday morning, I went to see my doc.  I got there at 8:40am.  After being in the car for just 15 minutes, I could barely get out and walk across the parking lot.  I'm sure I looked like a complete idiot.  I got to the door and realized they weren't open yet.  They open at 9am on Fridays.  Ugh!  There was no way I was walking back to the car - or sitting for another 20 minutes and then walking back to the office again.  So I stood there, by the door in the cold rain.  Yes, I hurt that bad.  Seriously close to tears.

He gave me a steroid (anti-inflammatory), pain killers and muscle relaxers.  Ahhh.  I left there and went to see my chiropractor and got some adjustments.  Fridays are crazy and I have to spend a lot of time in the car running around.  The thought of staying in that sitting position for the next few hours was agony.  So, I called my niece Maggie and she came over to my house, and took my car to go and get Harlie and Terri from school to take them to speech therapy.  She dropped them off there, and went to pick up the boys from preschool.  Then she took James home.  Then she went back to speech therapy to pick Harlie and Terri up and bring them back home.  Whew!  But what help!

Her doing all that for me, allowed me to lay down and take some meds.  So thankful!

So, since then I have tried to be walking or laying down, because sitting is the most uncomfortable.  Today is Tuesday, and it is much better - but still not 100%.  I've been very careful to make sure I'm lifting properly and not doing any twisting and lifting at the same time.

That is why I haven't been able to blog.  Sitting is the worst, so I've had very little computer time.  And plus, the meds made me not really feel like writing anyway.  And since I've not been doing ANY exercise, and I'm on steroids - I've gained a few pounds.  So, that's awesome.  And I am supposed to run a half marathon on Saturday.  So, we'll see how things go this week.  I might try to run a little tomorrow to see how I feel.

Anyway, on to Harlie...

Today Harlie had her second stage BAHA surgery.  I always struggle with how, when and what to tell Harlie to prep her for surgery.  I know I should tell her - but it is VERY difficult to know how to handle it when I get no feedback (questions) from her to help guide me.  I decided not to tell her the night before.  I mean, isn't it cruel to tell her right before bed?  So, I told her in the morning.  I have no idea what she got from the "conversation."  But, apparently it was enough, because she didn't cry once.  Not once.  And she was actually in a good, silly mood at the hospital.  They gave her Versed anyway to help her with the hand-off from me to them.  I'm thinking it might have actually been unnecessary, but I guess it doesn't hurt to give it.

Here are some pics from last night (Monday night)...

They are really cracking me up.

So silly.

And today...

After Versed

After surgery

Tonight, totally happy and fine.  

The doc said Harlie did great and that everything went perfectly.  She's the only doc that ever gets to use that word - perfect.  The abutement went on just fine.  And we have to see her in a week for her to check on it.  Then in four weeks from today to see how it's doing.  She said we can see how it's doing in four to six weeks (wouldn't it be awesome if we only had to wait four weeks to use it?!).  In the meantime, we're not sure if she can wear her softband hearing aid because it will most likely rub against the area.  I can't risk that, so she'll probably have to live without it for a while.  I have to think long term here.

Her doc also cleaned out her right ear canal.  Because her canal is still so tiny and it always has a hearing aid in it, she has a problem with wax build up.  And when wax builds up, it blocks her hearing and makes her think the aid isn't working.  She's been telling me it wasn't working a lot lately, when it is working.  Total bummer.  Especially since I can't clean it out myself.  And she really needs to be asleep (like under anesthesia).  So, we're going to try putting drops in her ear two times a week from here on out.  We've tried several different drop schedules, but maybe this one will work better.

She also had a cyst on her left upper arm.  It's been there for a couple of months.  And she would not allow anyone to look at it.  Hard to believe she can call so many shots around here, but it's true.  So, she opened it up and cleaned it out.  Awesome timing because she said that no way would Harlie have been able to tolerate that in the office.  Whew!  I'm glad that's taken care of.

Pushing Harlie out of the hospital with that dressing was not fun.  I know it's no big deal, but to other people who have no idea what happened - it looks like a bigger deal.  So, as I'm pushing her I can see everyone look at her, and then look up at me.  And I hate it.  I understand it.  But, I still hate it.  I try not to make eye contact with anyone and I act like I don't notice the stares.  And even though I am a completely happy person, who is happy to be taking her home, knowing she is completely FINE, it still makes me want to cry.  Weird.

But after we got to the car, it went away.  And we went on our merry way.

And then the phone calls began.  OMG.  No joke.  I was on the phone from the second we left the hospital (around 1pm) till Tom got home (around 6pm).  It was awful.  You might remember me mentioning that I've been having nursing issues?  Well, they all came to a head today.  My issues have been with the company that was providing my nursing - not with the nurses themselves.  It's WAY too long of a story for tonight.  I will have to write about it later.  Just know for now that I'm happy to not have to deal with that company anymore.  I had to terminate our relationship earlier than I would have liked, but it had to be done.  I just couldn't take it anymore.  They have been so unprofessional and awful in the past few months.  I was done.

Quite frankly, it pisses me off that I had to deal with that crap today, when I should have been able to focus on pampering my sweet Harlie post-op.  I hate them.

But, thinking positively, I am excited to be working with an organization that seems to be much more professional and organized.  And I'm SUPER excited to have my respite hours again!  Woohoo!!! Now that is reason to celebrate!

I have way more to tell you, but it was a long day, and I need to get to bed.  Thank you so much for thinking of us today!  This one is really exciting for me to think about.  Right now Harlie cannot hear the difference between the sound G makes and the sound D makes.  If you notice your mouth when you make the sounds "ga" and "da" there is no visual difference for Harlie to see.  It's the same with the sounds B and P make, "ba" and "pa".  I'm probably not writing the sounds correctly, but I hope you can still see what I mean.  This is a HUGE negative and challenge for her while trying to learn to read and write.  I am SO hopeful that the BAHA will make a difference here.  So, keep your fingers crossed!

Thanks again for all your support!

Much love,
Christy xo

Harlie's off the O2!

Lots to update...

First and foremost - Harlie is WELL again!  Woo Hoo!!  We went to see her pulmonologist on Thursday.  He said that her culture (that they took when she was in the ER last week) came back positive with pseudomonas.  They guessed that was the case, which is why they put her on the extra antibiotics.  So, at least the GI issues weren't for nothing.  Anyway, he said he didn't think it was pneumonia - he thought her low oxygen saturations were due to the mucus plugging that the pseudomonas caused.  Whoever read her x-rays that night in the ER might have only looked at the x-ray taken, without comparing it to her previous images they have in the computer.  I think due to her lobectomy, her right lung always looks a little hazy, which can be misread if you don't know Harlie's history.  Regardless, I'm so happy to say that she's off the supplemental oxygen and that she's her happy, spunky, energetic self again!

Harlie's next surgery (when am I going to stop saying that?!?!?) is February 12th.  It is her second stage of her BAHA placement (or whatever you call it).  The surgeon will place the abutement (the thing that holds her hearing aid on her head).  In the image below, the processor (hearing aid) is the black box to the left, the abutement is the round thing in the middle, and the titanium piece is already in her skull, under the skin.

The abutement is screwed into the titanium and the surgeon will destroy (?) the hair follicles around the area, so it stays clear and doesn't interfere with the BAHA.  After this surgery, we wait six weeks for it to heal before we can use it.  I can't wait!!!  She's been SO good with her soft band BAHA, so I can't even complain about that.  It's not a fight, she doesn't take it off, in fact, she asks for it.  But, it will be nice for her not to wear the head band anymore - fashion-wise, of course. ;-)

Anyway, I was a little worried that her lungs would need more time to heal before she could go under anesthesia (especially since we thought it was pneumonia).  So, I asked her doc about that when we were there on Thursday and he said she's good to go.  Woo Hoo!!

I have more surgery news to tell you about, but I'm going to have to save it for later... it's going to have to be it's own post and this one is already going to be too long.

So, back to Thursday again, I asked Harlie if she wanted to go back to school and she immediately, and excitedly said "yes."  So, Friday, she FINALLY returned to school.  Happy faces all around (especially MINE!).

And for her first day back in forever, she was fairly cooperative and willing to work.  Her teachers said she had a great day and they were all so happy to see her back.

Speaking of her teachers...

I cannot say enough good things about her team this year.  Seriously, I am SO incredibly grateful for all the educators that care about Harlie.  She is not an easy child to teach - and they all work so hard to find what works for her.

A few weeks ago, we had a meeting about her communication.  To try to summarize, we were trying to figure out what we wanted to focus on as far as how she communicates to us.  So far, we've really been accepting whatever way she wanted to communicate, whether it be sign, verbalizations, or her communication device (talker).  And, that just wasn't working.  The main problem is that her sign and verbalizations are just not able to keep up with her mind.  So, it's getting more difficult to test her or assess her at school, without her being able to communicate what she knows.  And that's clearly a problem - that will only get worse over time.

So, we all agreed that she CAN use the communication device.  It does take a lot of time, but she will get quicker and more efficient after lots of practice.  When it snowed, she used the device to say, "I want sled."  We haven't used the word "sled" in a long time.  So, either she remembered where it was from a long time ago, or she knew how to find it.  Either way, it proves that we need to commit to this device and really reinforce its use - all the time.  It's not easy, though.  Often times, we know what she wants without having to use it, but that will not help us down the road.  We have to teach her that using the device is the standard.  And she has a lot of people in her life.  And we all need to be on board.  And that's not so easy, either.

The person who got us the device (Rachel) a couple of years ago has been working on getting someone from the company who makes the device (Prentke Romich) to come to the school and do a training session.  That hasn't been easy, either.  So, she thought of another idea, and contacted a speech therapist within our county who knows Harlie's device really well, and knows how to program it.  And she was willing to come and show us a few things to make the device less intimidating and more usable for us.   Can you imagine having to organize all your vocabulary on paper?  How would you do it?

So, we had that training session today.  We spent two and a half hours going over stuff.  I know I've been saying "it's not easy" a lot, but, it's not easy to know where to add new words.  Tom took Harlie to the car wash this weekend and I wanted to add that button.  But where does it belong?  Under the washing category, the car category?  I ended up putting under cars.  But then Rachel suggested putting under "places."  Of course!!!  I forgot all about that category.  So, I need to change that.  And I need to spend more time studying the device myself, too.

It was a very beneficial session.  And I just cannot say enough great things about everyone that was in that room.  So many times I am reminded just how unique she is (like when someone asks a question about how to teach her something, and no one really knows the answer).  In a room full of special education teachers and/or therapists, that's a little scary.  So, this is not easy work for them.  But, despite that, they were all there, taking their valuable time to learn/teach something that will help Harlie communicate.  I want to hear what she has to say without me giving her the words.  They are helping her to get there.  What a gift!!!  How can I ever tell them how much their work means to me, to Harlie to our family?  We are so, so lucky to have them believe in Harlie and her potential.

It was also comforting to hear them say that this device is really only temporary.  And that she will be a reader and writer one day.  And when she can do that, she will type what she wants to say, which will be a different device.  Wow.  Crazy to think about that.  But, crazy good, I guess.  Well, aside from actually talking.  That would be my first choice.  But, I would totally take her typing away, like a typical teenager texting.

Another exciting development as far as her education goes is that I hired her teacher of the deaf from a couple of years ago to work with her privately.  She is the one that thought of the My Name is Harlie book and helped me write it.  She left the county and started her own company.  The best part is that she will come to our house once a week to work with Harlie.  And she already knows her current team, so they can communicate what they are working on in school so she can concentrate on that, too.  And she came to the meeting today, too, so she can incorporate the device into her sessions, too.  How awesome is that?  Just can't say it enough, I am so appreciative of all their hard work and dedication.

Okay, that's it for tonight.  I've already started working on my next post - which I'll hopefully have up tomorrow.

Thanks for reading!
~Christy xo

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

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

My Day

For some reason, I'm feeling really stressed today.

I recently decided to train for the half marathon in Richmond in November.  This summer has been really hard on my running.  I've spent the last three summers training for a half, and then two full marathons (although I switched to the half for the last one at the last second).  At any rate, for three summers in a row I had a purpose and a goal for my running.  Not having the time for that this summer has, well, sucked.

So, I decided to put the training on my calendar and see if I could make it work.  It's hard.  There are hundreds of other things I "should" be doing, yet I try to cram in a run whenever I can.  It's humid out.  Really, really humid.  And that is no fun to run in.  Especially by yourself.  When I was training the past three summers, it was with a group.  So, even though it was hot and sticky, it was just better when you threw in some socializing.  If I'm tired afterwards, my children don't care.  So, I have to keep going, even when I'm dying to just sit for a second.

Anyway, so I ran 4.5 miles today.  It was really yucky out.  I don't exactly get a lot of choices of times to run, and today it had to be done at 10am.  Not ideal.

After that I drank a shake, cooled down, took a shower and ran to go pick up Cooper from preschool camp.  I had to be out of the house, with Harlie by 12:30 to get her to her baha surgical follow-up appointment.  So, between the times of 12:00-12:30 I had to do the following:  pick up Cooper, make and feed Cooper his lunch, feed Rooney and take him out for a walk and make my own lunch.  My Mom came over to watch Cooper for me while I was gone.  Murphy was at Summer Blast till 2:30.  I knew I wouldn't make it to pick him up, so Tom had to go and get him and bring him home to my Mom.

In the process of making Cooper a hot dog and myself a peanut butter and jelly sandwich (only the best for us) I forgot to feed Rooney.  But I remembered to walk him, weird.  Anyway, I ran out with Harlie and my sandwich to rush off to our appointment.

I got there at 1:00 and signed in.  We sat there for an hour.  Not really unusual as far as appointments go.  But what kills me is what I had to do to get there by 1pm.  And for what????  I could have fed Rooney and walked him and not drove like a bat-outta-hell if I had to be there at 2. Grrrr.

Then at 2pm Harlie signs "potty."  For the second time in that hour.  We go into the restroom, which is out of the ENT's office and down the hall.  I would have told someone we were going, but no one was at the window at the time.  Anyway, someone had obviously thrown a dirty diaper in the trash in there.  So, that was a bonus.  Especially considering we spent 48 minutes in there.  FORTY-EIGHT MINUTES, FOLKS!!!

I wanted to come out of my skin.  Harlie was struggling.  And I felt bad for her - no doubt.  But honestly, I felt worse for ME!  I was so stressed.  I knew by then they had called our name and that our appointment time was long gone, filled by others.  And there was NOTHING I could do to help her.  It was awful.  I tried to distract myself by playing solitaire on my phone.  Do you know how many games you can play in 48 minutes?  Oh, and in that time do you know how many people tried the door, felt that it was locked, and STILL knocked?

I'm sorry, but yes, it is STILL occupied and I'm not happy about it, either!  One time I had to actually open the door - they knocked repeatedly and clearly weren't going away.  It was three small children.  And I had to tell them to get lost.  Okay, I was way nicer than that.  Although it was difficult to switch my attitude from completely annoyed at the knocker to nice when I found three small children, one of which was probably in the middle of potty training.  Poor kids.

Tom called while we were in there and I asked him if he gave her Miralax last night.  It's been determined that she has to have a daily dose of it.  Or this happens.  He says, no, he did not.  He thought I had switched the dose to the morning time.  Which I did a few weeks ago because of her antibiotics, but I had switched it back to nighttime again, and could have sworn I told him.  So, that means that she hasn't gotten it in a few nights.  At least.  OMG.  He also wanted to tell me about his lunch that was so good.  Some kind of really awesome salad.  From a restaurant.  Where he sat down in a chair and ate it.  Sorry, Tom, but I had a PB&J while I was driving, and I'm standing in a stinky hot bathroom, so now's not a good time to telling me about your delicious salad.

You'd think after five years we'd have stuff like this all figured out.  But, it's just not that easy.  And by the end of the night, we are both tired.  Which is why I make Tom do the night meds.  I hate doing her night meds.  With a passion.

Anyway, I'm sorry as I can be, but couldn't take it anymore.  I pulled her off the potty.  I mean, we could NOT sit in there all freaking day.  We returned to the waiting room to find a whole new set of patients waiting.  I suppose that happens in an hour's time.

I peeked through the glass in the door to see Ann, our audiologist.  I knocked on the window and when she saw me she said, "Oh, there you are! Where have you been?"  I told her I was trapped in a hot and smelly restroom, but I'm pretty sure that was obvious.  I suppose the one saving grace is that I could blame this all on my lovely, sweet daughter versus me.

They took us back within a few minutes.  And then the torture began.  It wasn't really that bad.  The doctor just had to clean the incision really good - since I clearly haven't been.  There is a really big scab on it.  And she said that the scab is covering the sutures and will slow down the healing process.  So, we need to gently try to remove it.  She covered it in some ointment and said we need to try to ease it off after soaking it in ointment for a while.

It took me bear hugging her and a nurse holding her legs and the doctor holding her head to get this accomplished.  Tom and I have been trying our best, but it's really hard for us to do this "activity" with her.

Then we left.  It was 3:20pm.  And I was hungry again.  The PB&J just didn't cut it.  And when I'm hungry, I get a little agitated.

So, I'm driving on a road that is two lanes.  Speed limit is 45.  And you know when there's a slow car in both lanes and they are spaced perfectly apart so that no one can get past either?  Yeah, so that happened.  I wished I was in a monster truck so I could run that poor woman over!  GRRRR!!!  They were both going 40.  Patience.  I have a lot of patience, right?

So, I get home.  Home sweet home.  With whining, fighting children and a TV and computer going at the same time.  So, I took Rooney for a walk.  I always get in a better mood when I take him for a walk.  It's really quite amazing.

We get about four/five houses down the block when somehow Rooney goes face first into a glob of melted gum.  Awesome.

So I had to try to get it off his face - with my bare hands.  Awesome-er.  So much for that walk!

That is at least the fourth run-in we've had with gum while walking Rooney.  The other times we just had to fish it out of his mouth.  Who knew there was so much gum laying around?  I guess that comes with living in a neighborhood full of children.

Tom called on his way home and said he is going to make a super delicious dinner for me and we are going to eat it after the kids are in bed.  And we are going to drink wine with it.  It's an impromptu in-house date night.  I already feel better.  And maybe I won't be mad at him anymore. Since our 48-minute bathroom stay was mostly his fault.  ;-)

So, that was my day.  So far.  It's only 6:30.

More later!
~Christy

Baha surgery

Harlie is doing well after her bone anchored hearing aid surgery on Friday.

As I was putting her to bed on Thursday night, I told her that we were going to wake up early the next morning to go to the hospital for a quick surgery.  She immediately started to cry.  While it was so hard to tell her and then watch her cry, I am so glad to know that she understood what I was saying to her.  And I mean "language-wise."  As in she understood the words and what they meant.

I didn't really know what I was going to say ahead of time.  So, I just told her that it would be over quick and that she wouldn't have to stay there.  And that I would be with her the whole time and we'd get through it together.  While I think it was somewhat comforting to her, she still continued to cry a little bit until she fell asleep.  Ugh.  Some moments are so hard.

Waking her up to go to the hospital went well.  She didn't seem upset and I just kept on telling her it would be over quick and we'd be home soon.  Once we got there we had to wait a long time.  She was second case, but the first case didn't show.  You'd think that wouldn't matter much, but they said the first case was a hard to schedule and coordinate kind of case, so they were giving them more time to get there.  So, we had to wait.  I have to say, it doesn't take much for her to be entertained.

Playing with a toy phone, old school style.

Hiding behind a chair.

The surgery took a lot longer than I expected.  I was thinking it would take an hour, but it took more than two before they came to get me.  Her doctor said that it went great.  Actually the exact words she used were "perfect" and "textbook."  I must say that's the first time I've ever heard those words when it comes to her.  She said that her skull was plenty thick enough that she was able to use the larger titanium implant, which will give her better sound quality.  It's so awesome when things go her way!

There are three parts to a bone anchored hearing aid:

1.  the titanium implant (the screw looking piece in the photo below)
2.  the abutement (the cone shaped piece), and
3.  the processor (the actual hearing aid).

The first surgery is to implant the titanium piece.  She implanted two, one is called the sleeper and it is there just in case one of them isn't accepted by the skull.  She put them at a certain angle and distance from where her ear canal should be.  Right now, she just shaved her hair in that area and then stitched up the incision (which is curved).  But during the next surgery, she will thin out her skin in that area a little bit and remove her hair follicles.  Even though she had to drill holes in her skull, I still considered this surgery to be relatively minor.  So I was a little surprised to see her afterwards...

Holy dressing!

Does the bow make it look better?

It took a while for her to wake up.  They checked her pacemaker, all's good with that.  And then I got her up and in my lap.  They had to take out her IV, which is always traumatic.  At this point, she's hyper sensitive to anything when in the hospital - it doesn't matter what you're doing to her, she's going to fight you.  And she's a really good fighter.  The anesthesiologist hung out with us way more than usual.  I think she just wanted to make sure that she was fine since she was taking longer than normal to wake up.  So, she was there when the IV had to go.  Harlie cried and fought and the anesthesiologist was clearly concerned.  I laughed and said, "If you think this is bad, you should try getting the needle in!"  And then I followed it up with a typical husband's kind of response, "She's fiiiiiine!"

I asked the nurse to get me Harlie's chair and the second I showed it to her and put her in it, she was all better.  And then the anesthesiologist said, "You are the perfect mom for her.  I would never be that calm."  But, you get used to it little by little.  And I've learned when I should worry and when I shouldn't.  And when I shouldn't worry - I don't.  I'll have plenty of opportunities to worry later - trust me!

On our way home, stylin' as usual.
She's going to kill me for this pic one day!

She had to wear the dressing for 24 hours.  I was so proud of her.  She wanted to take it off so many times.  But I would tell her no and she would stop trying.  I told her "we can take it off tomorrow."  I took Rooney for a walk and when I got back, I found the boys looking like this...

So supportive!  And so, so sweet!

The dressing came off while she slept.  So, I went on ahead and removed it the next morning while she was still sleeping.  When she woke up the first thing she did was reach for it and she got an "Oh no!" kind of expression.  I told her we were all done with it and she was happy.  Until I had to clean it with peroxide and put bacitracin on it.  Two times a day!  That is not an easy task, let me tell you!

Tonight was the first time we could wash her hair.  Whew!  I was glad to do that! The area of the incision is still really swollen.  It's really hard to tell if it's okay (as far as redness goes) because she will NOT stay still long enough to get a good look.  Like I said earlier, she is hyper sensitive to anything.  Trying to clean it and treat it with the ointment is agony.  For all parties involved.  Our follow up appointment is Thursday.  That should be fun.

Rooney is fine from his surgery on Thursday.  When I picked him up the vet said that I was lucky to be getting him back.  Apparently they all wanted to keep him!  He is so sweet and cute, I am not surprised.  But when I got him his ears were all droopy and his tail was straight.  He was one sad little pup!  The only time his tail curled that night was when I fed him.  Pugs sure do like to eat! By the next afternoon, he was right back to his normal happy self.

Cooper's eye appointment went well.  He's near sighted, but that's age appropriate.  She said his Duane's syndrome is very mild and that she thinks his squinting at objects is him just being a kid.  So, he's good and doesn't have to go back for two more years.

Well, that's it for tonight.  Thanks for checking in!
~Christy

Busy week

Today Rooney got neutered.  Poor little guy.  He's been gone all day and it's been so weird.  I miss him!  I get to pick him up in an hour.

Harlie came home from summer school today (it was her last day) and she asked where Rooney was.  I told her that he was in the animal hospital because he had to have surgery (I wanted to use words that she might know and relate to) and you should have seen her little face!  She was so sad!  And she just put her head down, started to cry and walked away.  I told her that he will be fine and that he'll be home tonight.  I am going to take her with me to pick him up.  I'm hoping that she will think she's not the only one who has to go through that kind of stuff.

Tomorrow Harlie will have surgery for a bone anchored hearing aid (BAHA).  I know, I haven't gotten a chance to blog about this topic in so long.  You might remember that I met with her local ENT about it back in June.  Well, I decided to go on ahead and do it.  I've run it through my head thousands of times.  Here are my main reasons for going ahead with it now instead of waiting...

1.  It takes 6-8 months from the first surgery until it can be used and benefits from it can happen.
2.  I think it will be much less traumatic for Harlie to have the smaller, out patient surgery first - before the big one in Boston.  I don't want her to have to go back under after such a big surgery - for all she knows it's another big one.  I can see that being much more stressful for her.
3.  Between all the follow-up appointments in Boston, her normal appointments, therapy, school, etc. I don't see how I would fit it in anyway.

It just has to happen now, and get it out of the way.  Done.  I'm sick of thinking about it.

So, we're doing it here (not in DC) and I feel comfortable with that decision.  Of course I get the call a few hours ago that I have to have her there at 6:30am.  And then I get a call from the doctor's office that she still hasn't received pre-authorization from our insurance company for the procedure.  She's been trying to get it since the end of June!  And when I think of how much we are paying for that insurance... grrrrr!  So, now I am hoping that she got the authorization so that when we get there everything will be okay and I won't have to deal with issues later.

And just to complicate matters a little - I scheduled an appointment with Cooper's eye doctor like six months ago (she is booked for months and months!) for tomorrow morning.  He has Duane's Syndrome and his eyes have been doing some weird things.  Of course, when I scheduled it - the BAHA thing wasn't on the books yet.  And then when I got the date for the surgery, it was the only one I could do.  So, it's not the ideal situation.  Because now Tom has to take Cooper. I am not rescheduling it to have to wait another six months!  But, Tom is full swing into the Ronald McDonald House renovation.  So, it's not ideal for him to be away from work.

Luckily, Murphy has a play date, so that worked out great!

So, definitely not my ideal week to have Rooney neutered, Harlie have surgery (her 29th, I think?) and have a doctor's appointment for Cooper.  But, sometimes that's just the way it works.

Okay, gotta go and get Rooney! More later!
Thanks!
Christy

More stuff...

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

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

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

Uh-oh.

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

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

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

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

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

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

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

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

Speaking of her not being well...

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

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

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

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

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

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

More soon!
Thanks,
Christy

BAHA Consult Appointment

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A BAHA placement is a two-surgery process.

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

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

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

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

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

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

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

Whew.

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

Risks:

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

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

Benefits:

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

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

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

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

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

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

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

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

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

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

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

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

Thanks for reading!
~Christy