Tuesday, August 31, 2010

Happy Anniversary!

Eight years ago today...


we were married.


It was a great day.  We had so much fun.


And we had the best wedding "cake" ever.  Krispy Kreme donuts!  (Tom's idea.)



Ahhh... little did we know what was in store for us.  How much we'd be tested.  Heck, we still don't know what lies ahead.  Or how much we'll still be tested.  All we can do is live each day the best we can and hope that we can continue like we have.  Still laughing.  Still loving.  Still arguing.  Still bickering.  Oh, oops - good stuff.  I'm supposed to be talking about the good stuff.

But, we all know that there's bad stuff, too.  And if you think there won't be bad stuff, well, then you'll be disappointed and maybe less likely to weather the storm.  I think as long as the good outweighs the bad, we'll be okay.

Here's us during our honeymoon...


And when Murphy came along...


And when Harlie showed up...


And then Cooper...




And just something for fun...



Happy Anniversary, Tom.  You're an awesome Husband, Father and Friend.  We are a happy family, and couldn't ask for anything more.

Love,
Christy

Monday, August 30, 2010

Exciting Stuff...

We had an exciting weekend.  I'll start with the most exciting thing that happened.

Murphy learned how to ride a bike!

 

Look at him go!  At one point he said, "Daddy, let go!"  



Tom found this video showing tips on how to teach a child to ride a bike.  What a difference that made!  Tom lowered the seat so Murphy's feet could comfortably touch the ground.  Then he took the pedals off.  Murphy scooted around on the bike for about 30 minutes or so, learning how to balance.  Then Tom put the pedals back on the bike.  And I am not kidding - this was the first go after the pedals went on...

video

It was awesome!  

Since I was trying to video Murphy's big moment, Harlie was mad that I wasn't doing whatever she wanted me to do, which is why you can hear her "complaining" in the background.  Then I watched the video when we got home and I can't stop laughing at Harlie.  I never even noticed her standing there with her arms crossed.  

Now, of course, he still needs some practice.  He gets tired pretty quickly.  But, it was about 100 degrees and we were on a blacktop, so that was understandable.  Tom took him back out that evening and he rode up and down our street a few times.  He fell once or twice, but got right back up and rode again.  

Very cool!

Here's what Harlie was doing while Murphy was learning to balance the bike...






Here's Cooper...


Actually, Cooper was throwing mulch while Murphy was learning to balance his bike.  I don't think it's nearly as cute as he does, so I didn't get any pictures.  

It was a very busy day.  Earlier that morning I ran in the Patrick Henry Half Marathon. That's 13.1 miles.  Here's my friend Heather and me when we saw Tom and Murphy out in the middle of nowhere.  


The course was very rural, so there was essentially no cheering for most of the course.  Which was kinda strange, really.  All of the roads were two-lane roads with no shoulder.  So we were surprised to see Tom and Murphy standing there - the only spectators for miles and miles.    

It was pretty weird to be running with corn fields on both sides with no cars to hear (they had one lane open, but few cars passed).  Although it did shock me the first time I heard "CAR UP!" I think we were in the first mile or so.  That's something we hear during our training runs - but not an organized race!  But it was a small race - just over 1,200 runners.  

And there were times when all you could hear was the sound of feet hitting the pavement.  And there was a point that you could see ahead a very good distance, and it was just rolling hills, and runners ahead.  It was actually pretty cool.  There wasn't a lot of conversation, either.  But Heather and I weren't going for personal records (not in that heat!) so we chatted a lot, which was great.  

The finish was in a park and here's me coming in.  



Don't I look so happy?  It's because I could see the finish line and knew I was about to stop running.  I was tired at the end of this one.  I had a very hard time with breakfast that morning - so I ran this one with an empty belly.  Not recommended, that's for sure!  But, I survived and had a great time (thanks to Heather, who finished just ahead of me).  We did it in 2 hours and 7 minutes.  Not too shabby.  

But, since I didn't eat breakfast, I was hurting afterwards.  (Must admit that my sick mind was thinking a feeding tube would come in pretty handy for an occasion such as this!)  So, thinking about the marathon ahead (November 13th - remember, be there or be square!) got me a little nervous to say the least!  It is very hard to imagine doing twice that distance right now.  In two weeks I will run the farthest I've ever run - 15 miles!  While it is scary - it is also very exciting to think of doing something I've never done before.  So, I'm going to try to focus on that for now.  And hopefully that will outshine the scariness of it.  

Thanks for reading!
~Christy

Friday, August 27, 2010

A New First.

I love experiencing a new "first."  I feel that's one of the perks of having a child with Harlie's challenges.  At almost FOUR years old, I still get to be surprised at a first, and the feelings are usually indescribable.  And these "firsts" of which I speak tend to happen earlier in life (you know, like crawling, walking, talking, etc.)

So, at physical therapy last week, I was sitting on the floor and we were all talking about Harlie's stuff, when all of a sudden, Harlie walks over to me, puts her hand on my shoulder (which made me turn to face her) and she kissed me!!!

She. Kissed. Me.

That was the first time EVER that she kissed me without me asking for one.  And even when I ask her, she more often turns me down than kisses me!

And this first couldn't have been better timed!  It completely put to bed any thoughts that she was still mad at me.  That she thought I was a monster for taking her to that hospital and letting all those people do those mean things to her.  That was her way of telling me that I was forgiven and that she was totally happy.  And I felt ON TOP OF THE WORLD!!!!

MY daughter - my daughter who was had 15 major surgeries - who has been under anesthesia more than 30 times - who finds walking up the stairs WORK - who can't talk - who doesn't run to the ice cream truck with joy on her face like all the other neighborhood kids - who has therapy 3 times a week - who doesn't understand or care for eating food of any kind, but has to anyway - who breathes through a tube - eats through a tube - can't jump in the pool like every other kid - who can't ask me "why" about anything...

IS A HAPPY LITTLE GIRL.

Is that not the greatest thing, EVER???

It just goes to show you that being happy is a CHOICE.  It is a choice you make every day.  If you can make the most of what you have, you will be just fine.  And lately, I'm really starting to believe that she will be just fine.  Just fine.  And that's a first for me, too!

Thanks!
Christy

Thursday, August 26, 2010

Kids are weird.

So another week has passed, and no new post from me.  I wish that meant that I had nothing to write about!  Again, I have too much to tell you about.  So, I will start with the most recent events...
Wednesday was a busy day.  We took the kids to the mall to play in the play area and ride the train.  We just did this on Monday, I think.  But it’s an inexpensive way to get the kids out of the house (and us, too!).  And they get such a kick out of riding that train!  On Monday it was me, Brandy, and the kids.  We all got on the train and were riding around the mall (it’s an outdoor mall).  There were these two young guys walking by and they looked at Brandy and laughed.  And Brandy said, “Hey, you do what you gotta do.”  It was hilarious.  And so very, very true! 










Anyway, so this time it was Jennifer, her two kids and me and my three kids.  The kids were playing in the play area, and as usual, I couldn’t take my eyes off Cooper.  Well, I did a glance around and when I went back to Cooper, he was re-entering the play area with some other kid’s sippy cup - drinking out of it!!!!  Noooooooo!!!!! Arghhhhhh!!!  Eeewww!!!  

Sigh.  
What’s done is done.  Must get over it.  Must stop cringing every time I think of it.  Jennifer said that Cooper’s going to have the best immune system ever.  One time (okay, okay this has happened more than once), he drank sour milk (by accident, of course) and never got sick.  Maybe that’s normal.  I don’t know.  He’s also licked floors at doctor’s offices and the like.  Yes, you read that right.  He’s licked floors.  He won’t eat chicken (no matter how it’s prepared) but he’ll lick floors and drink sour milk.  And you know those foot stools you see at a shoe store?  Well, they have one at the orthotic office where Harlie gets her ankle braces.  Well, we were in there getting her braces and he licked the foot stool.  You know how it’s got ridges so your foot doesn’t slip off?  Well, he clearly liked to lick that surface.  Oh, why oh why do I have such strange children????  They must get it from their father.  
Oh, and then while we were at the play area, Harlie came and asked me to follow her.  She stopped, put on her shoes and then walked to the restroom.  She used the potty (and had a dry diaper, thank you very much), washed and dried her hands and walked back to the play area.  Someone please explain to me why she would stop playing at the play area to use the potty - but she won’t do that at home?  I guess I should be happy for what I get, but c’mon!  
Later that day Harlie had an appointment for her hearing aid.  I’ll have to tell you about later as I don’t have time to go into it now.  Then today she had speech therapy and a nutrition appointment.  And, I’ll have to tell you about it later.  I have to run now.  But I will blog again soon and fill you in.  
Thanks!
Christy

Friday, August 20, 2010

Therapy Day

So, yesterday we had our Day of Therapy.  And I just can't brag about Harlie enough!  She was SO good!!!  She was really cooperative (for the most part) and went with the flow without any real protest.

First we had Feeding Therapy with Allison.  We love Allison.  She has been with us since Harlie was just a wee baby.


Then we had Speech Therapy.  She did well.   She is definitely trying so hard to verbalize everything.  She just has a really hard time with consonants (b she can say).  So the words that she's "saying" are just the vowel sounds.  And some of the vowel sounds she can't produce yet - like "eee" and "aaa".


They have this cool swing that Harlie LOVED.


Barbara (her therapist) wanted to focus on getting her to say some action words.  Since action words have a lot of power, she might be more likely to use them (like go, or stop).  I have a video of her saying "stop" and "go" but it won't upload right now.  So, I'll have to try to upload it later.  

For some reason, she decided she wanted to take her dog to therapy today.  Which was fine by me.  Hey, at least it got her to walk!



And when we got into speech therapy she tied the dog to a pole.  That dog isn't going anywhere, that's for sure!


video

Then it was off to her physical therapy evaluation.  Traci was Harlie's PT since she was a wee baby.  When Harlie aged out of Early Intervention (when she turned three last September), we changed over to the school system's PT services.  But, according to the school system, if the child can get around without assistance, then they don't need PT.  At first she got PT for 30 minutes once a week, then it was once every other week, then it was as needed.  So, it just wasn't adequate for what she needs.  We missed Traci and it was so good to see her again!!!


She has no arch at all in her feet.  



 She has weak ligaments and that will never change.  Muscles you can strengthen, but ligaments are the way they are.  We were hoping that the ankle braces would help some with her ankles and feet.  And while they help her when she's wearing them, they haven't changed anything for when she's not wearing them, which is unfortunate.  And that means that she'll be wearing them for a really long time.  Bummer.






This was one of her less cooperative moments.



video

Overall, she totally qualifies for more PT.  Traci said that she will continue to fall behind other kids her age and the gap will get wider, faster.  I think she said that will fall below the 1 percentile for locomotor skills (I think she said she's at 1% now).   That link says that "most children learn to walk at one (Harlie was two), and to run, hop, and jump at two (she is almost four and doesn't do any of those things).  And that they begin to master galloping, skipping, sliding and leaping at about three (again, Harlie doesn't do any of those things.)  Not that I care that much, though.  She can walk and walk fast (her running, I suppose) so I'm happy.  She's happy.  But, later, she might not be so happy about the difference in her abilities vs. her peer's abilities.  Like in Kindergarten.  So, we're looking more long-term here.

We will also look into getting her a shoe lift for one side.  Since her hips are crooked, it gives her a leg length discrepancy, so putting a lift in one shoe might help her.  The faster she walks, the more you can see that she isn't even, so to speak.

So, we will work in seeing Traci once a week.  The only unfortunate part is that she's not close.  But, I really feel that seeing her is worth it.  In other words, I would rather not see someone else closer.  Traci and Harlie have a relationship and Traci knows what Harlie is capable of when she's just being stubborn.  And I think that is so valuable when dealing with her and trying to push her to the next level.  So, we'll just have to figure it out and make it work.

We are going to be very busy, very soon.

Both Brandy and I were pretty much dreading the day.  But, it turned out to be great.  Harlie really seemed to enjoy herself - especially in physical therapy.  And at 7:30, Harlie looked at me and signed "night-night" asking to go to bed.  She was one tired little girl.

Have a good day!
Christy

Harlie's Haircut

On Wednesday night, Harlie got a haircut.  Her last haircut was in January, I think.  And boy was she due for one!


She was really good for most of it.


Harlie has a TON of hair.  It is thick and plentiful.  And it is beautiful.  Just what I prayed for when she was a little baby.  I remember specifically saying, "God, you owe her some good hair!" 




Ta-Da!  It looks so much better and healthier now.  


Although I would by lying if I said I wasn't a little sad to see her curls go.  She's had those curls for a long time and we're going to miss them.


Here's her new shoes we got her on Tuesday.  Her old shoes wouldn't fit over the new braces she got a month ago (see the swirly braces?).  These are Keds and work great because they are really boxy in shape and so they go right over the braces with no struggle.  That's a welcome change!  And they're cute, too!


Doesn't she look like such a big girl???


Ahhh...and there's that smile we were missing so much!  She is back to being happy and we are all loving it!  Including her.  


Thanks!
~Christy

Tuesday, August 17, 2010

Harlie's Back!

Yes, my friends, my sweet, funny, joyful little girl is BACK!

Things started to change Sunday night.

A little background first... Harlie LOVES to count to 10.  I know that sounds weird.  But she learned to count to 10 in sign a little while ago.  And she tries to verbalize each number.

During her recovery we tried to get her to count, knowing that she loves it so much.  But she refused.  Just like she refused to sign anything, or communicate in any way.

Well, on Sunday night, we put her to bed and turned on the monitor so we could hear her while we were downstairs.  And then I heard it.  She was counting!!!  We could totally tell that's what she was doing!  Tom and I knew things were looking up then.

Then Monday and today things were just different.  She's laughing and smiling and interacting and signing and playing and being herself again!  Oh, what a welcome change!!!  Her being happy again changes the whole feeling of the house.  She was really bringing us down!

Last week I took her to see her pediatrician.  She cried when I parked the car in front of the building.  Which was pretty surprising, considering those appointments are usually pretty painless.  Her doc was awesome, he listened to her heart and lungs while she sat in the chair beside me.  He said he didn't even want to put her on the exam table.  Pretty nice, huh?

He also said that maybe she was depressed.  She certainly appeared to be.  And he said that adults can have issues with depression after a major surgery like that.

I can't help but wonder what she hears/understands about these conversations we have with her in the room.  Sometimes I think she understands more than I realize.  So many times I have spoken with a doctor about something that she was doing/not doing and after that appointment, she stopped/started whatever it was I was talking about.  It's almost like she likes to make a liar out of me!

And just a few days after that appointment, she is totally back to herself!!!  Weird.

We went to see her cardiologist today for another follow-up appointment.  That went well.  Her oxygen saturations are still in the 70s, which is definitely lower than I would like.  Her doc said we should give her about six more months to see if they come up.  If they aren't in the 80s by January-ish then we might want to do another heart cath to see if there is something else going on.  Maybe after hearing that conversation Harlie's sats will come up miraculously.  Ah, if only!  We see him again in a month.

At the appointment today she waved hello and good-bye and was generally her goofy self.  She even signed "potty" and when I took her, her diaper was dry and she peed in the potty.  Wow!  She is one crazy little girl.  As far as her potty training goes, I'm just following her lead.

Oh!  And to prove my point about her making a liar out of me... I mentioned to her doc that she still won't walk any distance (like from the lobby to the exam room, which was NOT far).  Then we leave the appointment, she gets out of the stroller to push the elevator button, she stands there to wait for the door to open, it opens, she gets in, pushes the button for the 1st floor, stands there, walks out when the door opens and continues to walk - halfway to the stinkin' car!!!!  I mean, c'mon!!!  If he had looked out the window and seen her walking through the parking lot I would have lost ALL credibility!!!

Sometimes I think that girl just likes to test me and push me to my limits!!!  Well, she's going to get it this time.  Last week I called her physical therapist and she's going to evaluate Harlie for physical therapy on Thursday. And if she thinks Harlie needs it, well she's going to get it.  That'll teach her!  Try pulling one over me, I don't think so.  You have to get up preeeetty early to trick this Mama!

Speaking of Thursday, oh is that going to be a killer day.  Here's our schedule:

9:30-10:30 - feeding therapy
11:00-12:00 - speech therapy
1:00-2:00 - physical therapy (across town!)

She is going to be one tired puppy that night!  And so will Brandy and I!!!  Those are exhausting appointments for spectators, too!

And tomorrow night Harlie gets a haircut.  Her hair is just too long!  Don't worry, I'll take pictures.  Before and after, of course.

Thanks!
~Christy

Monday, August 16, 2010

Marathon Training

Since this is fresh on my mind, I thought I would start with my Marathon Training.

Overall, I am so very pleased with how well it is going.  Here is what the training schedule looks like:

Monday - cross-train
Tuesday - 3 miles
Wednesday - Half the distance of Saturday's run (last week that was 6 miles)
Thursday - 3 miles (hills or speedwork)
Saturday - long run (last week it was 12 miles)

So, right now it is hard for me to imagine running for 26.2 miles (which I'm hoping will take about 4.5 hours).  But, we'll take it mile by mile.  Until we get to 20.  That's the longest our group will run before the race.  The last 6.2 miles are on our own, during the race.  That's the scary part.

What I find difficult about Marathon Training:

ONE:
It is a huge time commitment.  I knew that going in and Tom had to be on board, too.  This is definitely not something that impacts only me.  And time is a precious commodity in the Holton House.  Seriously.

TWO:
Tom is very active, too.  He cycles and that takes a lot of time, too.  He has trained for and completed two Centuries (100 mile rides).  And those 60-75 mile rides takes hours.  HOURS!  So, each day we have to coordinate our training schedules.  Sometimes I get really mad at him.  I'm just being honest here.  And it's no secret to him.  Trust me!  It just seems that I am constantly working around his schedule and in my mind I think "but he's not training for a marathon!"  Shouldn't MY training come first???  Shouldn't everything I want come first????  Geez!!!

We duke work it out, though.  He will cut a workout short so I can leave earlier if we have therapy or something for Harlie.  Or if I have to work at my part-time job (you know, the one I'm going to write about some day?).  Sometimes he gets mad at me because I don't give him a lot of notice of my schedule.  But, in my defense, my schedule is so nutty that my brain can only handle looking ahead a couple of days at a time.  Really.

THREE:
Nutrition.  There are days that our schedule is just too tight.  And if I had the ability to schedule things not so close together, I would.  Believe me.  But, that just isn't always an option.  I'm often at the mercy of openings with a therapist or doctor.  And to get to see the person we need to see, you take what you can get.  So, eating right and when I'm supposed to is a true challenge.  You're supposed to eat within 30 minutes of a workout, but often that 30 minutes is the only time I have to shower and get dressed to dart off to an appointment.  I realize that this is important, however.  So, clearly I have to make more of an effort to do whatever I can to eat right so I can continue to run.  And run safely.

FOUR:
The training group that I'm running with (Sportsbackers) divides all us runners into groups.  And each group has several "coaches".  They send weekly e-mails to "motivate" us.  At first, these e-mails were really hard for me to read.  Training started in the beginning of June, and I had a lot on my mind with Harlie's heart surgery coming up in July.  So, reading about finding motivation and how you need to focus on running, blah blah blah, was really hard.

Running - and this marathon - simply CANNOT be my number one priority.  Period. Even IF I desired that, I couldn't make it happen.  And it is hard to think that most people there have the desire and ability (or luxury in my eyes) to do that, and I don't.  It just was another time for me to feel different than everyone else.  And I was afraid that would impact my ability to finish the race.  I thought that kind of focus was a necessary training element.

Well, I'm happy to report that - so far - training has not required that kind of focus.  My motivation to run comes from deep within, so all that other stuff, I just don't need.  And feeling different than everyone else?  Well, maybe I'm getting used to it.  Because I just don't notice anymore.  And THAT my friends, is a welcome change!

What I find good about marathon training:

While training is not my number one priority - it ranks pretty high up there.  So, while it's not my main focus - it gives me a new, different focus.  ME.  And I think that's a good thing - for any mom that feels divided in too many places.  And it's really nice to have a goal that I'm working towards.  And one that doesn't involve Harlie.  Almost all of my goals for the past FOUR years (hard to believe sometimes) have been her goals.  And I have to say, I like focusing a little on me for a change.

And I enjoy it.  I really do.  I actually enjoy running.  And I think it really helps with stress.  I like the people I've met because of running and I like the group I run with on Saturdays.  I like our conversations.  I like the support we give each other.  And I like feeling like I'm a part of something.

And a part of me can't help but think of those that can't run.  Their bodies just don't allow it for whatever reason.  Gee, I wonder where that comes from?  So, I almost feel like it's my duty.  I have legs that work, and a heart and lungs that can provide oxygen to my body.  I think of Harlie during my runs and wonder what she'll be able to do and wonder how she's done all she has.  And when I feel tired, I think of her again and keep running.

So, I'll keep on running.  And hope for no injuries that keep me from achieving my goal - 26.2 miles on November 13th at the Suntrust Richmond Marathon.  WooHoo!  For all you locals, come out and cheer us on - be there or be square!

Thanks,
Christy

Saturday, August 14, 2010

What's going on?

It's been another week, and no new post!  But that doesn't mean that nothing's been going on around here!  If only!!!  No, it actually means that so much has been going on that I haven't had any time to sit and write and well, that just isn't good for me.  I need to write!  It keeps me sane.

But, I still do not have the time for a proper post.  I just want to give you a brief glimpse of what's coming in the next few days (I hope!):

  1. A trip to the beach (no, Harlie did not go with us)
  2. Our wonderful support system (this one will probably be mushy)
  3. My job.  Yes, I have a part-time job.
  4. Feeding therapy and the intensive program
  5. Speech therapy
  6. Physical therapy
  7. Pediatrician appointment
  8. Cooper and the pool slide
  9. Marathon training

Well, those are the things I want to write about.  But, for now I have to run.  Literally.

TWELVE MILES.

Seriously.  And the weather right now is only 70 degrees, which is good, but with 81% humidity, which is bad.  And the high today is only supposed to be 88!  Hopefully it won't reach 88 until long after we're done running.  It has been SO HOT lately.

I hope you are all well!
~Christy

Monday, August 9, 2010

News Alert!

Christy Holton got an "I love you" in sign tonight from her strong-willed daughter, Harlie, a 3-year old girl recovering from open heart surgery three weeks ago.

It was reported that Christy was so elated that she gasped and signed an enthusiastic "THANK YOU!" to her daughter in genuine appreciation.

It was just three weeks ago that Harlie had her 4th heart surgery, her 15th surgery total.  And that ever since, she has just not been the same little girl that her parents knew prior to the surgery.  It has been an emotional roller coaster, as is the case when raising a medically fragile child.   "She's much more aware now that she's almost four, but she just doesn't understand why, and that makes it so hard on all of us" her mother said.

The family is hoping that Harlie will return to her normal, loving self soon.  And getting an "I love you" tonight was a wonderful sign that progress, while slow, IS happening.  The family thanks you for all the thoughts and prayers and loving efforts of support.

Sunday, August 8, 2010

Stuff

Well, last night was interesting. We were woken up by each kid, once. And not at the same time, of course.  

Cooper crawled out of his crib.  

I knew this was coming as I have caught him with one leg over the rail more than once.  He jumps up on the end and swings his leg over the front.  So, yesterday Tom lowered the mattress to the lowest point which we were hoping would buy us some more time.  That obviously didn't work.  

I really didn't want to have to move him into a bed yet.  Murphy went into a bed at 25 months, but he was such a calm little guy.  Cooper, not so much (22 months old now).  I'm going to have to padlock every drawer, door and toy box in his room.  And does this mean I no longer have my baby?  I can't believe he is almost two!  I just don't feel like I'm ready for him to be in a big boy bed.  But, I know, it's not about when I'm ready.  Darn it!

We fed the bed.  

Ah, it's been a wonderfully long time since this has happened.  Sometime during the night, Harlie's feeding tube became disconnected from her belly.  And the pump just kept pumping the food - right into her bed.  I don't know why this doesn't wake her.  I mean she was sleeping in a pool of formula!  EWWW!  Isn't that slightly uncomfortable?  

I thought later that I should have taken a picture so you could see just how incredibly messy this is.  But, if you close your eyes and picture pouring a can of brownish formula on top of a sleeping child, then there you go.  

Not only did she loose out on who knows how many calories, she had to be wiped off with washcloths (this is no job for just regular wipes) and completely changed.  So, she's woken up in the middle of the night to find herself on the floor, being manhandled and changed and washed (so Tom can change her bed).  Ah, just another loving moment between mother and daughter that will continue to foster the trust and love that I feel from her every day.  I'm not counting on getting an "I love you" from her anytime soon. 

One step forward, three steps back.  I suppose we'll get there eventually.

Murphy just woke up and then woke us up.  He's always the easiest kid.  

As far as how Harlie is doing...

She is smiling and laughing a lot more.  But still no signs of affection whatsoever.  No kisses, no hugs and certainly - "I love you's" in sign.  

Her oxygen saturation levels are still in the 70's.  Not ideal by far.  

Her secretions are out of control.  It has been years since we had to suction this much.  It wears on you.  You can't leave her for a second.  And she is constantly removing her HME, which is completely annoying.  And dangerous.  Because her secretions dry out and she gets plugs.  Luckily, she must have a decent air leak around the trach, because sometimes I don't see how in the world she's breathing through that thing! 

We started her oral feedings again.  Brandy started them last week - by doing one a day.    She got about three ounces total per feeding, including drinking formula and eating pureed fruits.  Today I will feed her three times (hopefully).  This morning she drank four and a half ounces of formula and had another two ounces in pureed fruits.   So I think it was a great feeding.  I'm hoping that getting back into her old routine will make her start to forget the past few weeks.  

All I know is that I'm tired of the way things have been going lately.  I'm over her being mad.  And treating me (and everyone else) but mostly me - like crap.  I'm putting my foot down this week and she better learn to get over it and move on.  And be happy for crying out loud.  And loving again.  Please be loving again. 

I know she will.  It just stinks waiting for it.  

This morning, as I was typing this, she went to the junk drawer in the kitchen.  Fished around for a minute and then brought me the screwdriver.  Hmm?  I asked her what she wanted me to do with it.  Then she turned around and walked back into the living room.  I went back to typing, then she brought me a toy, upside down, with the battery door facing me.  It needed new batteries.  She knew I needed the screwdriver to open the batter door.  She doesn't miss a beat, does she?

I can't help but wonder what she would be saying if she could talk.  How different things would be.  It's a good thing she's patient with us.  

Thanks,
Christy

Tuesday, August 3, 2010

Another night...

and no "I love you".  At least she smiled more today.

We went to see pulmonary today.  That went fine.  She is definitely getting better now.  He was not concerned.

Since I have not blogged as much lately, I didn't tell you about Friday.  Harlie gave me a little bit of a scare.  She was just sitting on the couch (had not moved all day) and she was breathing pretty heavy and sweating!  And it was not hot in the house and she was sitting under the ceiling fan.

I ended up calling her pulmonologist.  And chatted with him a bit.  Her work of breathing seemed worse than the prior day (Thursday) and her sats were only in the high 60's, low 70's without supplemental oxygen.  He made me feel better by telling me he was going to be on all weekend, and that if I felt like she was getting worse to bring her to the ER and call him first and he would meet us there.

After I hung up the phone, her sats got as low as in the 50s!  I can't help but wonder about the accuracy of the monitor - but it wasn't acting funny, and when I put her oxygen back on it consistently climbed back up from there.  I just told myself that when I felt like I could not provide her the support she needed, I would take her in.

My reluctance with taking her to the ER was that I really did NOT want her to go through the trauma of having to go back into a hospital - unless absolutely necessary.  I knew they would put those monitors on her chest and that she would be miserable and scared.  And I did not want that.  So, I just carefully monitored her the rest of the night and by the morning, she was a lot better.

When we saw him today he said that I scared him a bit.  He also said that when it comes to kids with special needs, he goes with the mom and how she feels.  I love docs that think like that.  He trusted my comfort level, which I think is wonderful.

I very rarely call a doc with that feeling of panic anymore.  I used to feel that a lot when she was between 6 and 11 months old.  That was a hard, scary time (before her lobectomy, which really helped her a lot) and there were so many moments I thought that no one could help her or us - in our care of her.    I was scared a lot that summer.  And I really enjoy the many months that go by without feeling that feeling.

On Saturday, since Harlie seemed to be feeling better, we took the kids to Brown's Island for a Big Brothers/Big Sisters event.  They had a bounce thing there and the boys loved it.  Harlie actually wanted to get in so Tom went with her.  She ended up crawling into a tunnel and just sat there the rest of the time.  It is very clear that she listens to her body and doesn't push herself to play when she's not feeling up to it.  And even though I KNOW that she is doing great - all things considered - and I am so proud of her - I couldn't help but be a little sad to see other kids be able to jump right in and play.

Well that's it for tonight.  Thanks for reading!
~Christy

Monday, August 2, 2010

New found skill!

I can't write as much as I want to right now, but I just had to post this.  The other day Brandy (Harlie's nurse) told me that Harlie did a 24-piece puzzle - all by herself.  I hate to admit that I really didn't fully believe her.  I mean, with NO assistance?  C'mon!  


So, a day or so went by and I put that same 24-piece puzzle in front of her and left the room for a minute.  When I came back, she had already put together a lot of the pieces.  So, I sat there and watched her.  And she did it.  All. By. Herself.  


So, of course, I had to pull out another one to show her Nana, a professional puzzle-put-togetherer.  I knew she would appreciate this new found skill!





Even while being suctioned, she remained focused on the task at hand!


Now, I get that this might not be totally amazing to the average person.  But, for some reason, I am so impressed!!!  

So, tonight, just for kicks, I put a 60-piece puzzle on the table.  And with MINIMAL assistance - meaning that we did NOT put one piece in - she completed it!!! 




At about this point, the boys headed outside to play and shockingly enough, she wanted to go, too.  So, she took a little break from the puzzle.  She wanted to get in the kiddie pool, so she made me take off her shirt.  But, I don't know if she's ready for the kiddie pool yet, so I didn't let her in.  

She came right back in and finished the puzzle.  


I am just so, so impressed.  We watched her put this one together, which did take a little time.  But, she never got frustrated and she just kept on, one piece at a time.  

She is still not herself.  And has not forgiven me yet.  In fact, when I sign "I love you" at night, she refuses to look at me.  Can you feel the love?  Because I can't.  

Each day I wonder if today will be the day.  Maybe tomorrow.  

Thanks!
~Christy