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

Quick One

I hope you all had a Happy Thanksgiving.  We did.  We had most of my family over to our house.  Tom made a wonderful dinner.

Here is a picture of the vegetables he roasted (before he roasted them)...

Aren't they beautiful?  And they were yummy!

Tom and I did something different this Thanksgiving.  We started the day off with some exercise.  I ran the 5-mile Deep Run Turkey Trot.  And then I went back home and picked up Tom and we both did Adrenaline.  It is an hour long outdoor fitness class.  It was great.  There was a huge turnout.  And we had a lot of fun.

It was a very busy holiday.  And I was left with no time to blog.  I wanted to write something about how we're so thankful.  But, I think you already know that.  So, I'll spare you.

I'll jump to today instead.

The weather has been great so the kids have been playing outside a lot.  Yesterday, a group of kids in the neighborhood set up a lemonade stand.  So, today Murphy came in and asked me if he could sell some toys they don't play with anymore.  Of course, I said no.  A while later I went out to get the mail.  And I found Murphy and his friend selling leaves, and those flower-grass things you see sticking up from the upside down recycle bin.

They were also drawing pictures on a pad of paper - and selling their drawings.  Here's the sign...

All you really need to know is the beginning - Drawings are $1.  PS - if you don't have a dollar, you can pay .25 or draw your own.  Ahhh, they are funny kids.  I asked them if they were distracting drivers as they drove down our street and they said they were, "entertaining" them.  Nice.  Of course I had to tell them that no one could read their sign while driving.  And I had to tell them that no one would buy their leaves considering they were dead leaves and they were everywhere!  After looking around, Murphy nodded in agreement.

I then told him that if he wanted to sell his artwork - he needed to take more time with his drawings.  So, he went inside and got some supplies.

When I spent some time looking at this "display", which I think was very clever of them, he said, "Mommy, they are not everywhere."  Which is true.  This plant (whatever the heck it is called) is not in every yard.

I have to give them credit for their display.

Soon the whole family ended up at the end of our driveway.

I can't believe it, but they actually "made" $15.00!  One mom drove by and purchased several drawings for $10.  And then a neighbor purchased a few for $5.  Honestly, I feel terrible!  So, Murphy is going to take them some cookies tomorrow.  Tom and I made pumpkin whoopie pies last night.  And I have to say that they are pretty darn good.  While I can appreciate their desire to make some money - I really don't want them out there asking for money, you know?  So, I will feel better if I think that they got something for their money.  And I think that's an important lesson for Murphy to learn, too.

And the evening ended on a positive note - Brandy had her baby girl tonight - a week after her due date!  Brodie Myra was born at 6:56pm and weighed 8 pounds, 6 ounces.  I told Harlie that Brandy had her baby and she smiled.  Harlie's been swaddling her baby lately.  I think she's practicing!  I can't wait to take Harlie to meet Brodie.  That's going to be fun!

That's it for now.  More later!
Thanks!
~Christy

Happy Thanksgiving!

 I hope you had a nice Thanksgiving.  We were able to celebrate another "first" this year.  Harlie was able to eat her first Thanksgiving meal - ever!  She sat at the table with us and ate what we ate for Thanksgiving.  What an amazing blessing she is - in every way.

Here she is with Tom...

 And me.  It occurred to me that we (as in Harlie and I) have hardly any 

pictures together.  I must correct that!

Getting ready to eat her first Thanksgiving meal.

This is Harlie's drink bottle.   

 I know it is a little nontraditional - but it works.  It allows us to squirt milk in her mouth instead of relying on her to suck from the straw.  She can suck, but she can only get a little at a time (she hasn't learned how to take consecutive drinks from the straw yet).  This helps her get in the volume she needs without completely tiring her out.

Well, I left it at home!  We went to my sister's house for Thanksgiving this year.  She only lives about 15 minutes from me.  But no one felt like driving home to get it, so Tom went all MacGyver and created his own squirt bottle from a Mountain Dew bottle, bolus tubing and painters tape.

And it worked great!  

The big moment!!!

Yum! 

Every day I am more thankful than words can express.  Every day I look at her and feel so blessed that she is with us and happy and thriving.  So many times in her short little life, it could have gone the other way.  And not a second goes by that I don't remember that, and thank God for letting us keep our sweet little girl.  

Another reminder of my feelings (and reality) came the day before Thanksgiving.

Wednesday afternoon, I learned of the passing of a little boy from the trach board (an internet trach support group).  He was six years old.  I found this trach board when Harlie was just a few months old.  And his mom was there, offering her advice and support, while sharing her adorable, smart and spunky little boy with us.  While I never met them in person, I did know them.  And I feel his loss.  And I can't stop thinking about him, his family and how they are dealing with everything right now - and how they will continue to deal with his loss forever.

Back in February, we almost lost Harlie.  Over an infection.  That got into her blood stream and pumped through her heart.  It was too much for her heart to handle and it stopped.

She's fine now.  In fact, she's great!  But that's the thing with a child with complex medical issues and abnormalities.  She's at a higher risk for anything to take it's toll on her.  Something that could be a blip for a healthy child - lands Harlie in the hospital.  Don't like the flu shot?  Eh, a healthy kid will most likely be okay if you turn it down.  Not Harlie.  I don't have the option to skip such precautions with her.  The risk of the vaccine is way lower than the risk of the flu itself.

It is HARD to have a medically fragile child.  I am always very aware of her complexities.  I know her heart doesn't function normally.  I know that it will eventually "run out of gas" and she will need a transplant.  I know what her oxygen saturation levels and heart rate are and that they are NOT like a typical child's.  I know she doesn't have five lung lobes like everybody else.  I know she has a hole in her trachea, leading straight to her lungs, making her way more susceptible to bacteria and infection (and drowning).  And I know that she still has more surgery in front of her, with increased risks there, too.

And that is why I never take her - or anything she does - for granted.  And why I feel so blessed to have her.   And I hope and pray with all my might that I will get to feel that way for many more Thanksgivings to come!

~Christy

Thanksgiving Day

I hope you all had a Happy Thanksgiving. It is so hard to believe that it is already over.

We ended up having an eventful day. Harlie had a terrible Wednesday night. Her oxygen saturation levels were so low. They are normally low anyway (around 75-85 - normal sats for a healthy person is close to 100). But I had to turn the oxygen concentrator up to 4 liters of oxygen to keep her above 70! That is a BAD sign. I had to suction her all through the night. And she was working very hard to breathe - while sleeping. I knew what all that meant.

I had to take her to the ER.

It certainly wasn't worth waiting till Friday to get her some help. And I knew that if I did that, her pediatrician would send me to the ER for x-rays anyway, so why wait? I figured the ER had to be pretty slow on Thanksgiving Day. Plus, with her jaw reconstruction looming ahead (now less than 2 weeks away!!!) the sooner she gets meds, the better. Plus, she was acting miserable. She had coughed up so much gunk during the night that it was all in her hair - and she had thrown up and that was in her hair, too (it's so great to be us) so I had to put her in the tub. She normally loves her bath. But, when I put her in, all she did was sit there and cry these big silent tears. It was so sad.

So, we went and they took x-rays and they said that she had pneumonia in her lower left lung. That's a new location for her. The past two times she's had pneumonia it was in her right lobe. Which they say could be caused by aspiration. Which terrifies me. That is a problem I REALLY don't want her to have.

Anyway, they put her on some more nebulizer meds, which she gets four times per day (she normally gets two meds twice a day), plus antibiotics and some Tamiflu, just to be on the safe side. And we were home in time for Thanksgiving dinner. My whole family came over - which totals 20 people. It was crazy. But good. I was so glad they let me take her home so we could all be together.

And she is so much better already. I was able to turn the concentrator back down to 1 liter last night and no suctioning during the night! YAY! So, hopefully she'll be fine from here on out.

Her jaw reconstruction is Wednesday, December 9th. Yikes. It is SO close now. And there is so much to do! We definitely have to take the kids to see Santa before then. There is NO way I can take her after her surgery - that would be terrible! She will look terrible for two weeks!

I know I should have focused on what I am thankful for for Thanksgiving. But, I just didn't have that kind of focus. And honestly, I am thankful EVERY SINGLE DAY for so many things. A day doesn't go by that I don't think of how blessed we are in so many ways. Of course there are days when I feel like if it weren't for bad luck, we'd have no luck at all. But in the end, I know we are lucky. Having Harlie has changed the way I think. I will never take talking, breathing or eating for granted again.