Thursday, February 28, 2013

Quick update

Hi! We are still hanging out here at the hospital. Right now we do not have a clear plan. Which, as you can imagine, is a little frustrating.

Basically, they were planning on scoping her today. So they started to clean her out in preparation for that. Which means she couldn't have any food. She last had a feeding at noon on Wednesday. Luckily she doesn't complain about being hungry (so far anyway). And while that is handy for situations like this, in general, we would much rather her have more of an understanding of hunger and therefore, want to be fed.

Anyway, my thinking is that we are here, with an empty belly, and an almost cleaned out system. Why not scope her? Doesn't it make sense?

However, the GI's point of view is that she is no longer showing any signs of active bleeding, so it was most likely a polyp or cyst of some sort, and that it has most likely resolved itself. Or she was straining and tore her colon and it has resolved itself. So he wants her to finish being completely cleaned out and send her home. Oh, but he wants an X-ray at 6am tomorrow first.

I find it hard to believe that it was a tear. Granted, I have no experience with which to come to this conclusion, other than I have seen her struggle and strain before. And she did not strain that we are aware of. So, I am having a hard time accepting that.

My thinking is that we're here, and cleaned out, why not just do it and know for sure? What if it is a polyp or cyst and the only reason it stopped bleeding is because they've loaded her up on Miralax and it's been too thin to bother it? And is it normal for a six year old to have a polyp or a cyst to begin with? Because I'm thinking no. And it looks like we're going to be here anyway for that X-ray in the am. And while she's here, they are keeping her on clear liquids only. So, by tomorrow it will be almost 48 hours since she had any food. Why risk going home and having it happen again, and having to do this all over again, when we are already here and able? It's just a scope for crying out loud.

So, that's my argument. No verdict yet. I think it will ultimately come down to how hard I want to fight for it. And I don't know the answer. Especially when I want to believe that they're right and that it was a one-time-flukey thing.

We'll see...

So, that's where we are. I'll update again when more develops.

Thank you for thinking of us and for all your offers of help. Right now, I think we're fine.

Much love,

Christy xo

 

Wednesday, February 27, 2013

Admitted. For a quick stay. I hope.

Today was kinda crazy. I can't remember if I told you that I decided to keep Harlie home from school today. Well, that turned out to be the right call.

This morning I had an appointment at the gym at 10. When I left Harlie was in the bathroom. I was a little puzzled because she spent a lot of time in the bathroom the day/night before. We struggle with the right balance of Miralax to keep her comfortable. But, we had it just right and she has been great for weeks - with no issues. She's been going everyday and all is good. So, that's why I didn't understand why the increased time/effort.

I got home right after 11, and she was still in the bathroom! Well, Terri said she took a break, but returned to the bathroom at 10:50. So I go in to check on her and there was a lot of blood in the potty. I know that's gross, but there's no way to tell you what's going on without telling you everything. I, of course, gasped because, well I certainly wasn't expecting that, and who wouldn't gasp when seeing that?

I know what you're probably thinking - maybe she struggled and strained and tore something. Well, that was certainly our hope! I had to take Rooney to his last day of intermediate dog classes (graduation day!) so I had to leave. On my way to class, I called her pediatrician. He said to take her to the ER if it persisted.

When I got home from doggie school and picking up Cooper from Bethany's house, Terri gave me an update. She said she was not comfortable with the amount of blood that she saw. Luckily she took pictures. And this is definitely a time when a picture is worth a thousand words.

I know you don't want to see them, so I won't post them. You're welcome.

Anyway, I then got ready to take her to the ER. By this time, it was around 1:30. I took a quick shower, and ate a quick lunch. Then Murphy got home. And it just so happened that last night we ran out of time while reading Wonder. Murphy wanted to read more (he's really loving it) so I told him that I would read it to him when he got home from school. And he did not forget. He asked me as soon as he finished his homework. But, I had to tell him I couldn't do what I said I would do because I had to take Harlie to the doctor. I feel so bad for him.

Anyway, we got to the ER and I was able to show them the pictures that Terri took. That saved a bunch of time and frustration. The thing that had me the most concerned (other than the amount of blood) was that there were several clots - bright red in color. Harlie is on daily blood thinners, so the fact that there were these clots definitely had me worried. And apparently the docs didn't like them, either.

They examined her and took several X-rays. She got an IV. I think they said they wanted to see her inflammatory numbers and check for anemia.

They were thinking that it might have been an intussusception. So they took her up to radiology and she had an unpleasant study. Oh, she really breaks my heart sometimes. But the test showed no intussusception. Darn it. Because they could have fixed it right then and that would have been it. Bummer.

So, we returned to her room in the ER and they said they were admitting her. The plan is for her GI doc to scope her in the morning. Apparently he has another case first thing, then he's supposed to be in clinic seeing patients. He's going to try to squeeze her in between the two. I don't know what will happen if he can't fit her in. I'm thinking if she doesn't bleed any more he will send us home and we'll have to schedule an appointment to scope. I hope he fits her in though because they won't let me feed her and she hasn't been fed since 1pm. She's probably not hungry anyway. But we're here, so it would be better if we could just get it over with.

Well, I am super sleepy and I need to try to get some sleep.

Thank you so much for thinking of us!

Much love,

Christy xoxo

Tuesday, February 26, 2013

Update

Harlie is sick.  Again.  It started last weekend (the 17th).  It seems like she has a cold.  But, just two days in this time, we had to turn on the oxygen.  Total bummer.  She's been on it 24/7 for over a week now.  She missed all last week of school.

I hate that she is missing so much school.  And not only is she missing school, but she's missing her therapies, too.  I like progress.  Even if it's super slow progress.  As long as we're working on something and moving in the right direction (even if it's at a snail's pace) - I'm happy with that (most of the time).  But, having everything come to a screeching halt because she's sick, totally stinks.  

So, when she was no better after the weekend, I thought maybe her pediatrician should see her, just to be on the safe side.  We went over everything, and came up with a plan.  For now, we are staying as is.  We are not putting her on antibiotics.  Looking back on her last illness, I can't say with any confidence that the antibiotics made any real difference.  Even after two different ones, it still took her 13 days to come off the oxygen and return to school.  I'm thinking that means it was a virus, which ABs won't help.  And that means she had horrible GI issues for nothing.  Um, no thank you.  

Her doc completely agreed with this thinking and is comfortable waiting it out a little longer.  He went on ahead and gave me a script anyway, so I can fill it if she gets worse.  He also said that given the circumstances (she really looks like she feels okay other than the increased secretions and oxygen requirement) he is okay with me sending her to school on oxygen.  He said if her teachers get the feeling she's getting too tired to continue, then pick her up, wait a day and then try again.  Even if she went for the mornings (the most important instruction of her day) I'd be "happy."

So, that's what we did.  Today (Tuesday) I took Harlie and Terri to school.  I only had a larger oxygen tank (the one that goes in the rolling cart), and that's kinda hard for Terri to take on the bus.  So, I just drove them myself.  Then I picked them up at 11.  I would love to say it went great.  But, apparently Harlie didn't feel like working.  Terri said that she wouldn't even write her name on a piece of paper!  And let me tell you - if Harlie doesn't want to do something, good luck getting her to do it.

It's such a struggle to know what to do with her.  I desperately want her in school, learning and playing like a kid should.  But I don't want to push her too hard, either.  My first thought was that I should send her back tomorrow, so she knows I mean business, and she has to work when she's at school.  But, I have to believe that if she didn't want to write her name, it's because she really doesn't feel good.  She can't fake low oxygen sats.  I can't imagine she would manipulate this kind of thing, either.

Sometimes I can't believe how incredibly skewed my perspective is.  She's been through so much, why can't she just carry on with a cold?  And then the reality of her medical fragile-ness hits me.  As strong and amazing as that 40 pounds of little girl is, she's still dealing with a fragile body.  With less lungs.  And a heart that has to work really hard (and that's been through so much).  And that sucks.  I'm thankful for all she can do, and for every day with her, don't get me wrong.  But, it still hurts to know what's true - no matter how many doctors she has, no matter how many surgeries she's had.  And it makes me sad to think of all she misses out on, and all the pain and crappiness she has to feel and live with.

So, after a lot of thinking... I've decided to keep her home tomorrow.  Even though I know it's probably the right decision, I still hear voices inside me saying, "But what if tomorrow is better and she can learn AND be sick at the same time?"  I have to tell those voices to shut it.  I have to accept what she can and cannot do.  And I have to put her health first.

I'm ready for this winter to be over.  It's kicked her butt.

Thanks and more later!
~Christy



Thursday, February 21, 2013

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




Sunday, February 17, 2013

Love Rox Half Marathon

Will go down in history as the worst run of my entire life.

For real.

The race started at 10am.  Awesome start time.  Plenty of time to get up, get ready and get down there, with no stress.  I ate oatmeal for breakfast, and went and met some friends so we could carpool together.

Once down there, found some more friends, and we were all happy and not really that worried about the race conditions, really.  See?  Here were are, just five minutes from the start...

Back row from left: Chris, Scott, Katherine and Niki
Front row from left: Ginny, Michelle and Me
Where to start???

Okay, first of all, I'm not a good runner, well, that's probably true as an overall statement, really, but what I'm trying to say is that I don't spend any time researching the race.  I don't look at the course, I don't look at how many water stops there are, if there are hills, whatever.  In fact, I usually don't even care where the start is - as long as someone else is driving, I don't really care.  Quite frankly, I just don't have the time.  I show up and run and follow everyone else and that's worked for me so far.  Plus, I just see no point in worrying about course details when I can just deal with it when I come up on it and move on.

The mistakes I made - inadvertently:  

I forgot to grab my hand held water bottle.  I thought about carrying it.  But, in the past with half marathons, there's usually plenty of water stops.  And I usually end up drinking at them anyway.  So, I guess I kinda thought, nah, I don't need it.  But, I really did mean to grab it, just in case.  But forgot.  Probably wouldn't have mattered anyway, because I probably would have left it in the car.  Regardless, I wish I had it, because this was a small race, and there were not enough water stops for me.

I also made a last minute decision to not wear a hat or ear covers.  Usually I take it off anyway, and I guess I just didn't want to have to carry it.  This was a bad decision as well.  According to my weather app on my phone, the temp was 38 degrees, which isn't that cold, really.  I've run in way colder weather.  So, that didn't bother me much.

I've bought cheap running clothes.  What can I say?  We're on a budget.  We're a one income family, trying to get by.  I usually buy my stuff at Target.  My gloves were $1.50 and I bought them last year.  Mental note, buy better gloves.  Like waterproof ones.  Also, because I have cheap clothes, they usually lack the little extras you need - like pockets for energy goos.  Luckily Niki and Katherine told me to put my goos in my gloves.  Awesome tip, guys!  So, at least I had 200 calories with me.

At one point within the first six miles, I misread my body's signals.  At the time, I thought I was hot, so I took off my long sleeved shirt.  Keep in mind that this is not unusual at all.  In fact, it's quite normal.  However, it was very wet (snowy mix of rain at times, sleet at times and snow at times, throughout the whole run).  So, I should have known, that was a little weird.  In hindsight, I was probably already dehydrated by then and was feeling a little sick to my stomach.  And you know when you feel a little queasy, you get hot?  Well, looking back, I think that's what happened.  So, I thought taking off my shirt would make me feel better.  It did at first.  But, then after that, I regretted it.  But, by the time I realized it, it was too late to put it back on.  I was soaking wet, and so was the shirt that was tied around my waist.

I also underestimated how many calories I would burn trying to stay warm.  I think taking off my shirt turned out to be pretty stupid.  In hindsight, I burned way too many calories, which resulted in more dehydration.

I didn't have a clear plan of what I wanted to do.  Do I race it, or just run it?  If I were to race it, I was going to run with Scott and Michelle so they could pace me.  I know I can run with them, because I've done it in the past.  Although not for 13.1 miles.  If I were to run it, I would stay with Niki and Katherine.  I was torn, and couldn't decide what I wanted to do.  I felt really good the first couple of miles and at a u-turn part of the course saw Scott and Michelle.  It was then that I decided to race a little, so I sped up trying to catch up to them.  Scott ended up waiting for me.  But we never caught Michelle.  Me racing to catch up was a bad call.  I usually start out slow and pick my pace up through the run.  Racing at the beginning was a big mistake.  Quite frankly, racing at all, was a big mistake.  In hindsight, I should have just run it with Niki and Katherine. But, that's hindsight for you.

Another thing that probably didn't help, was that we went to a concert on Thursday night.  In Northern Virginia.  And we got stuck in horrible, stopped dead traffic on 95 on the way home.  We didn't get home until 2:30am and as a result I got very little, and not good quality sleep.  More on that night in an upcoming post.  The concert was awesome and even factoring in yesterday, was still worth it.

The ailments I suffered:

A cramp.  I have never had a cramp before.  Can you believe it?  Maybe a little teeny tiny one, but not a big deal, really.  Yesterday I had a cramp right at the bottom of my sternum and it was bad.  Really, really bad.  Sharp, stabbing pain that made me want to hold my breath.  Not cool.  It was right at the halfway point.  The course was two loops, and it was right when we were passing through close to the finish that it was bad.  I saw Tom then, too.  And I SO wanted to quit.  I have never wanted to quit a race more than right at that moment.  I kept thinking I could just stop right then and be done.  Tom has my dry clothes and I could feel better in just a matter of minutes.  I don't know why I didn't.  I guess because even though I wanted to quit, I really didn't want to quit.  I knew that I would regret it.  Even though some runs hurt like hell, I always look back on them and think, I'm glad I did it.  So, I kept going.  Took a while to walk through it (the cramp).  But, it finally went away.  Thank God.

The course was really hilly.  And it had stairs.  Some of the hills were VERY steep.  And going down them can be just as painful as going up them.  I think it was the going down them that killed my IT band.  It has been a long time since I have felt any IT band pain.  Thank God.  It's really awful and nearly impossible to run through.  Once it starts, it gets worse fairly quickly.  It was on the outside of my right knee and it hurt.  I think at this point, I had only three miles to go.  Poor Scott had to run with me - I really feel bad about that.  He could have gone on and been out of that mess way earlier if he had just run on ahead and left me behind. I told him to go several times.  But, he said no.  He stuck with me.  And he got me through it.  After I told him about my IT band, he told me to sit down and he adjusted my knee (he's also my chiropractor, which turns out to be a really handy running partner ;-)).  That definitely helped and bought me some more time on my legs.

The weather.  Okay, maybe that's not technically an ailment.  But, at one point, and I'm not exaggerating, we were - running up hill, against the wind, when it all of a sudden went from a light rain/sleet fall, to a downpour of slanted sleet that hurt when it landed on your skin.  It was landing in my eyes and staying on my eyelashes, blurring my vision and making looking ahead impossible.  I stopped suddenly, and said, "FUCK!"  Sorry, for my language.  But, it's true.  There was not a more appropriate word for the situation, in my opinion.  And frankly, it needed to be said.  It was MISERABLE.

Another silly thing about the day, to add insult to injury was that for some weird, odd reason, I put on mascara that morning.  How stupid was that?  I don't even know why I did it.  I never do that.  I guess I had some extra time and it was later in the morning than a usual race, so I just did it.  So, here I was, running in God awful weather, hurting all over, with freaking mascara running down my face.  Awesome.  Talk about feeling good about yourself!

Lastly, as I previously mentioned, I was dehydrated.  I don't think I've ever been before.  At least to this point.  I have always associated dehydration with hot weather.  But, I guess it doesn't matter.  When you're body is trying to stay warm and you're running, you're burning a lot of calories and when you're not drinking enough, it can happen in cold weather, too.  And since it was a small race, there weren't a lot of water stops.  Not that it mattered that much anyway.  It was probably too late.

About a mile or so from the finish when my vision was really bugging me, I thought to myself, what are the signs of hypothermia, again?  So, I just googled it and one says, "poor decision making, such as trying to remove warm clothes."  That one, I knew.  Luckily, it mentions nothing about blurred vision. It mentions slurred speech, but pretty much every part of my body was numb, so it was kinda hard to tell.

Needless to say, I have never been more happy to finish a freaking race before.  And that includes the marathon I ran.  While I was definitely in a lot of pain when I finished my marathon, the conditions were not nearly as deplorable as yesterday.  I wanted out of the cold, wet, snowy freaking mix and into a hot shower and bed.  STAT.

In fact, conditions were so horrible, that no one stopped to get photos.  We all just left.  We had already planned to meet for lunch afterwards.  So, everyone that was going headed straight there.  At one point during the run I realized that I had forgot to pack an extra pair of shoes and socks.  My feet were soaking wet.  There was no way I could sit through lunch with cold, wet feet.  So, Tom stopped at a Rite Aid and bought me some big, fluffy socks.  My shoes are really light and thin, so once I took off the drenched socks, and put the new ones on, I put my wet shoes back on, and it was "fine" till I could get home.  Keep in mind that my hair was soaking wet, too.

I couldn't find a picture of me finishing (maybe they thought I wouldn't want it documented).  But, I found this one of a girl I don't know.  But, it shows how awful it was...



On the way to the restaurant, I knew I was sick.  I had not felt that bad in long time.  It felt like a bad hangover.  And what a crappy way to feel when you didn't earn it by having a fabulous time the night before!  Ugh.  So, I tried to talk my way through it.  Thinking I just needed to sit down in warmth and eat.

I forgot to mention that as soon as I stopped running, I noticed the right side of neck was killing me.  Like I had slept on it wrong or something.  Seriously?  I guess I should just be thankful that my back seemed to do just fine and never gave me any trouble.

So, we get into the restaurant and sit down with everyone else.  I think it's safe to say that I looked like total crap.  Apparently I was really pale.  Scott asked me what was hurting and I told him my neck was killing me.  He saw an empty table at the end of the restaurant, so he took me there and gave me a quick adjustment.  You should have seen the people sitting at the booth right next to the table!!  It was so funny.

Anyway, I tried to eat some bread.  But, I could barely chew it and get it down.  I sipped on some water.  And I thought I was going to yak.  So, I went to the bathroom and changed into some dry clothes.  Then I went back to the table.  But, the thought of food really made me want to vomit.  So, Tom asked me if I could drive home.  While I didn't necessarily want to (we had his truck and I don't really like to drive it) the thought of sitting there anymore was unbearable. So, I left and Tom got a ride home with them.

You know I feel bad when I leave a social gathering.  That I asked Tom to plan.  But I was in bad shape.

So, I drove home, forced down a banana, drank some water and took the hottest shower I could handle.  Then I dried my hair, got into bed and assumed the fetal position.

Now, I realize that after reading this, one would wonder why in the hell I run.  Well, luckily, not all runs are miserable.  In fact, most are quite enjoyable.  And I don't mean the actual running itself.  I am no natural runner or athlete, so I think the running part is always a challenge on some level.  But, doing it with friends, chatting, being outside, doing something physical, is almost always enjoyable.  And no matter how bad or good the run was, afterwards, I always end up thinking, I'm glad I did it.  I always come away thinking it was a great achievement.  And I always feel stronger - mentally, and or physically - afterwards.

Ultimately, I think that is the reason I run.  Because getting through something difficult (like yesterday's run) is not really as much of a physical challenge as it is a mental one.  And somehow I think if I can survive the mental challenges of yesterday, I can survive the mental challenges of my life.  When I feel stronger physically, I feel stronger mentally.  And I want to be strong.  I need to be strong.  And so I run.  And, thankfully, most of the time I actually like it.  ;-)

Thanks to all my running friends who totally get it and help me through all my runs by making great conversation and memories!  You're all awesome!

Much love,
Christy xo

Tuesday, February 12, 2013

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

Thursday, February 7, 2013

Random stuff.


I'm at school with Harlie again today.  I've been meaning to post some random pics for a while, so here they are...

I love this picture of Cooper and Harlie.  Although I'm not a fan of Cooper's outfit (he can now dress himself and likes to pick out his own clothes, obviously).  But I think it's hysterical that he has his arm around Harlie.  I know other siblings do that for pictures - but mine aren't very touchy like that with each other.  And I think it's funny that they are exactly the same size, even though they are two years apart in age.  Plus, the look on Cooper's face cracks me up.  The fairy wings and horn-rimmed sunglasses that Harlie's sporting is pretty funny, too.

Cooper and Harlie in the backyard.

Back in November I took this picture of most of the EOBs (explanation of benefits) we received from our insurance company in 2012.  These are just for Harlie, by the way.  Some I threw away because I just didn't feel like getting the book down (as you can see, it was getting pretty heavy).  I should have taken a picture like this each year to see which year produced the most EOBs.  You know, just for kicks.  I should probably go electronic, but I'm afraid my computer would blow up.  My email is already OUT OF CONTROL.



Tuesday was Rooney's first birthday!  I have become such a dork when it comes to that dog.  Anyway, here are some random, fairly recent, pics of him...

Rooney working hard.
I think I might have already posted this one...  but I just think it is so funny.  And so typical for an always hungry little pug.  And for the record, we NEVER feed him people food (except for baby carrots, which he loves).



So, I'm at school with Harlie and I had to miss Murphy's harmonica concert at school this morning.  That stinks.  But, luckily he understood.  We were all in the kitchen this morning (which is such a crazy place, usually) and I was dressed ready to go to school with Harlie.  Murphy looked at me and said, "Mom, I don't understand your pants.  Why do they have a crack in them?"  I said, "Because it's a skirt, Murphy."

He has really been cracking me up lately.

Okay, so my connection here is very spotty and it's taken me forever to type this.  So, before I lose connection again, I'm posting.  More later!

Thanks!
~Christy xo

Tuesday, February 5, 2013

Daisy Father Daughter Dance

The Daisy Father Daughter dance was Saturday night.  Here are some pics...

Harlie and Daddy

Harlie and Maggie

I LOVE this photo of her!
Gotta get in some puppy lovin'.

I love that she smiles at her reflection in the mirror.
I hope that lasts for a really, really, really long time.

I was so excited.  I found her dress at the Hanna Andersson outlet in Williamsburg for $15!!!  How awesome is that?  And this year - for the first time ever - I didn't have to think or worry about her drooling all over it.  Wow!

Of course I did have to worry about her shoes.  She has the most skinniest feet ever.  So, we get little to no choice of shoes.  No Target shoes for this girl.  Her shoes have to come in super narrow.  Which totally takes all the fun out of shoe shopping.

I really wanted to take her earlier in the week, but it didn't work out.  So, it came down to Friday.  And Saturday we were booked all day - no way I could have done it then.  So, Cheryl came to do her educational session at 2:15.  After that was done and I finally got the kids ready to get in the car, it was later than I wanted to leave.

But, sometimes, I just don't want to do what I'm supposed to do.  I'm tired of having to run around and do crap I don't want to do all the time.  My house was a wreck and I wanted to stay home and get it straight.  It was cold and super windy out and I just didn't want to take Harlie out in that.  But, I had no choice.  It had to be done.

To back up for a sec, the night before, the mom of one of Murphy's friends called and asked if he could go home with her son after school.  Perfect!  Murphy will love that and I only had to worry about Harlie and Cooper for the afternoon.  So, I called Maggie (my niece) and asked her if she could go with us to the mall so she could take Cooper to the play area while I did the shoe thing with Harlie.

As I was getting the kids in the car on Friday, I had some doc phone calls to make and in the process of that, I thought to myself, call Beth about Murphy and tell her I am running late and I can pick him up instead of her bringing him home.  I'll call her from the car I thought.  So, I get them in the car, and I think to myself, who was I supposed to call again?  Hmmm.....  I think and think, and it doesn't come to me.  I guess it wasn't that important - is what I said to myself.  Oh well, moving on...

An hour later, Harlie and I are still at the shoe place (they were busy) and my phone rings.  It was Beth.  THAT'S who I was supposed to call!  Ugh!  Of course, she's at my house with Murphy.  I offered to call a neighbor to see if she could drop him off there, but she said she would just keep him and I could come and get him when I was done.

Lately, it feels like my brain just can't keep up.  I'm still terrible at responding to my emails.  So much for that New Year's resolution.  There are times in the day when I get a moment to think and I have no idea what I'm supposed to be doing.  The to-do list is so long that it really feels impossible, so it's easy to give up and do something else.

Right now my brain is very preoccupied with nursing issues.  It's taking up a LOT of space, time and energy and I'm hating it.  More about that later.  Like when I get it figured out.

Anyway, Harlie and Tom had fun at the dance.  I could tell he wasn't super excited about going.  And I knew it was because he was thinking about how she was going to do, how she was going to act with the other girls, etc.  She just doesn't seem to try to communicate with her peers.  And they try so hard to communicate with her.  They want to hold her hand and lead her to where they want to go, but Harlie won't have it.  I don't know if it's because she's being independent, or if she's afraid they are going to go too fast.  I do think that she's very aware that other kids move around a lot more and faster and she might be afraid that she's going to get knocked over.  Maybe it's a little bit of both.  But, either way it is heartbreaking.

And every time I think that, I feel terrible.  Because I know so many other moms that would give anything to have their children to be able to do what Harlie can do.  It is so weird to live in the place between grief and gratefulness.  Maybe we all feel that to some extent, it just seems so extreme in our case.  So many times I wonder what kind of mom I would have been if I didn't have to do so many extra, unpleasant things.

On a good note, the other day Harlie used her communication device to say "juice."  I said, "What about it?" (tough love, you know).  And she cleared it out and then said, "I want orange juice."  And while I fully expected her to say "I want juice" (which is kinda crazy in itself because she's never asked for juice before) I certainly did NOT expect her to say "orange."  And just that simple, small little word lit up my world for a moment.  She "said" something I didn't expect.  And it was WONDERFUL.

Cooper and Murphy say stuff we don't expect all the time.  It's nice and all.  It's actually very funny.  And we enjoy it, no doubt.  But it was totally different with Harlie.  Ahhh, the extreme highs and lows of raising a special needs child.  How am I not chemically dependent on something?!?

Speaking of saying stuff you don't expect.... so we rented Hotel Transylvania this past weekend.  The kids must have watched it at least 13 times.  In my opinion it was quite funny and cute.  Anyway, there's mention of an uncle in it and Murphy asked me if he had any uncles.  ??????  Where has this kid been?!?!?!  So, I said (annoyed, of course), "Yes Murphy!  Uncle Bruce, Uncle Cabell...."  He interrupted me and said in a very shocked and betrayed sort of way, "Why didn't you tell me you had siblings?!?!?"

Kids.

Okay, that's it for this post.  I'm at school with Harlie right now (no nurse today) and will try to start my next post while here.

Thanks!
~Christy xo