So, guess where I am...

At school, of course!  And I couldn't be happier.

I wish.

Harlie's happy and healthy and glad to be here.  And I am thankful.  I really don't want to complain.  I don't!  But no mom should go with her kindergartener to school every day.  Period.

And I have a job.  A whole list of duties and responsibilities I need to work on every day.  And when those things aren't done, it makes our evening more stressful.  It just creates a negative chain reaction, that we simply don't need.

The mornings would be so much better if Harlie could feed herself her own breakfast.  And then that makes me think that maybe I should bring self-feeding back to the top of our priority list.  But, I just can't do that right now.  One, there's no more room at the top of the list.  Two, there's a part of me that says that would negatively impact her progress in having refusal-free meals (which we are still immensely enjoying).  I just don't think I could push her right now.  And the only thing that's telling me that is my gut.  And I don't know how much I can trust that.  Because the reality is that working on self-feeding will be very time consuming.  And we simply don't have any more time.  None!

So, yesterday was our first new and hyped-up Therapy Thursday.  And it sucked.  I knew after the first therapy session that it wasn't going to work.

First of all, I'm freaking tired.  I feel like a wimp saying that.  But, I haven't been able to stop for a second all week.  Plus, I did my Adrenaline class on Tuesday (my last day of "freedom") and it kicked my ass.  Seriously.  Since the new year I really feel like he's amped up the difficulty.  Plus, I had done virtually nothing for almost two weeks (since the sickness period in our home).  So, it was a shock to say the least.  My body is still reminding me that it's pissed.  Oh, and that I'm 40.  Shut it, body!  I didn't ask you!  

So, we were supposed to leave around 12:30 to go to our first therapy session - ST with Delisa (to work on the communication device).  But, the class had C.O.W.s (computers on wheels - when they bring laptops into the classroom) and the work was really good stuff.

The teacher had them make a "movie" about measurements using Keynote on Mac.  There were six slides.  And they had to do something on each slide.  One slide they had to put the balls in order from smallest to largest.  On another they had to put animals in order from lightest to heaviest (I thought for sure she would struggle with that one).  Then they had to put people in order from shortest to tallest.  Then they had to measure an elephant and a turtle by dragging paperclips to measure how tall they were in paperclips.  I was so proud to see that she could do all of those without any problem!

So, I didn't want her to leave in the middle of that.  So, we were late getting going.  Then she had to go to the potty.  Then she walks so slow.  Then we finally got out of the building and then they tapped on the window for me to come back.  Then I went back into the building (Harlie was still walking back toward the building) when they told me that I left her freaking communication device in the classroom.  Good one - considering we were rushing to speech therapy to work on the communication device.  Boy, would I have really looked like an idiot!

So, I put all our stuff down (must get a rolling cart for all that crap!) and ran towards her classroom.  Luckily her teacher sent a student towards the office with it, so we met in the hallway (time saver!).  Then we rushed back out the door toward the car.  I had Harlie's backpack, lunch box, suction machine and my bag (which carried my laptop).  And that stuff is heavy!  I couldn't stand walking that slow - my arms and shoulders were killing me.  So I ran ahead and opened the car and put my stuff down, thinking, of course, that Harlie would continue her slow trek down the sidewalk.  I turned around and nope.  She had not taken another step since I left her.  UGH!  So I ran to get her and just had to carry her to the car.

Sometimes I wonder what we look like to other people.  We are a mess!

So, we're in the car and I'm driving the speed limit to therapy... when my gas light comes on.  Great.  So, I get us to therapy and that goes okay.  It was our first session.  I asked her how she labeled our therapy for insurance - like for speech therapy or augmentative device.  She said either way, it's considered speech therapy.  This story's getting kinda long... but since we already see a speech therapist, I was surprised that our insurance approved our therapy with Delisa, since they only pay for one ST - even though they might be focusing on two totally different things (which totally annoys me, but whatever).  Then I remembered that we had to switch insurances at the beginning of January.  That's another big mess - but I don't feel like talking about that right now.  So, since we haven't been to see Becca in a while, I had not given them our new info yet.  Which meant that when they went to get approval for Delisa, they didn't see another ST providing services.  Which meant that I was going to have to pay out of pocket for Becca.  And she is NOT inexpensive.  Oops.

Therapy went well.  She gave me some tips on how to use the device more.  And we left.

Therapy was from 1 to 2pm.  Physical therapy is at 2:30, 30 minutes away.  Which means I don't have the time to get gas.  But, obviously I can't NOT get gas.  So I had to stop, which of course, made us late for PT.  And no matter what, we're always late for PT.  It was while I was standing still at the pump that I realized this was too much.  I didn't pack enough food for me for the day.  And, more importantly, I didn't pack enough food for Harlie.  I totally forgot to pack her a can for the afternoon.  Crap.  And home seemed like an eternity away.  So, something's got to go.  Period.

For the next 30 minutes I thought about it.  Which therapy can I stop?  Becca is expecting a baby in March, so we're going to stop seeing her eventually anyway.  Plus, her session is only 30 minutes.  So, it seemed logical that we stop that one.  Although I think Becca is awesome.

And wouldn't you know?  We sit down for Becca's session and she tells me that she's moving!  So, we mutually broke up.  Each of us saying it's not you, it's me.  Funny how things work sometimes.

So, back home we go.  Whew!  It was a looooong day!  And if I was as tired as I was, I can only imagine how tired Harlie was.

We go home and enter another chaotic environment.  It was Murphy's last day to work on his ocean diorama (habitat in a shoebox) and you know he didn't do anything while I wasn't home.  And Cooper has been especially whiny lately.  I mean, like every sound out of his mouth is a whine.  I don't know if he's got some teeth coming in or something, or if he just knows that this week has been crazy and he doesn't like it.  But it's really pushing Tom and I to the limit.

But, I have to say, Tom has been great this week.  He has really pitched in and been super understanding that my days have been... unusually difficult this week.  He was pretty grumpy earlier.  And sometimes I just get worried.  I guess about us (his family) pushing him too hard to do too much.  Even though our life is so crazy, I still want him - and us - to be happy.  I want to know that he is still where he wants to be.  So we talked about what we like/don't like about how our life is right now.  It's so easy to be angry at the way things are - and then take it out on the ones you love.  And then it's so easy to misinterpret that.  Then things just snowball downhill.  And I don't want that to happen.  Sometimes just talking about it makes a big difference.  You've been heard and therefore, you feel better.  Maybe he should blog...

At any rate, talking about it really helped.  And boy am I glad we had that talk when we did!  Because if we hadn't talked before the last few days, who knows how bad it could be around here!

Well, it's lunchtime again (10 freaking 30!).  More later!

Thanks!
~Christy

Harlie's "talking"

This has to be really quick... but I want to tell you how great Harlie has been doing lately.  She is really trying to talk!  She repeats everything you say.  She even sings the songs to shows on TV!  Her two favorites right now seem to be the song from Cat in the Hat and Wild Kratts.  She mostly hums, but you can totally tell what she's singing, so that counts.  Although with the Cat in the Hat song, she can definitely say "go, go, go" clear as a bell.

I really can't believe how hard she's trying.  And this growth seems to have come so fast.  Who knows where we'll be by summer!!!  I know it's not going to be all smooth sailing.  Her mouth does not make it easy for her, that's for sure.  So far, she really can't seem to be able to lift her tongue to the roof of her mouth or to her top teeth.  And I think that will make it very difficult for others to understand her.

Harlie had a fabulous speech therapy session with her private ST last week.  And my homework this week was to think of some specific words that we want her to learn how to say.  Last week they worked on getting Harlie to touch her lips together.  It really amazes me how many things that normally we don't have to work for - but she has to work hard for every little thing.  Like touching her lips.  Or raising her tongue.  Or breathing through her mouth and nose.

And she never complains.

Tomorrow she has physical and speech therapies after school.  I'm anxious to see what she does.  Last week in PT she worked with the Wii Fit.  That was fun.  I wish I could work in more therapy for her.  Because she actually has fun while working.  And they are so beneficial!

Last year her PT did an evaluation to see where she is physically.  It's very similar to being measured for the growth chart - like your child is in the 50th percentile for weight and 75th for height.  Physically, Harlie is in the 2nd percentile.  And it is extremely obvious at school.  And keep in mind that evaluation was done last year - before her spinal fusion surgery!  So, I'm glad she was cleared by her surgeon to go back to PT.  She has a lot of catching up to do.

We had parent/teacher conferences on Tuesday.  Overall, I think they went pretty well.

Cooper is very active and has a hard time sitting and paying attention during circle time.  I wonder where he gets that from?  Tom.  But, she said that he plays really well with his friends and shares easily and is very kind.  Me.  Socially, he is doing great.  I guess he'll eventually learn to sit still.  Right?  Now if we could only get him potty trained.  He has NO interest in it whatsoever.  And if we manage to get him to sit on the potty, he will only sit for a split second and is done.  So, sitting still is a problem across the board.

Murphy is doing great in school.  And I can't tell you how glad I am for that!  What a difference from last year's experience!!!  His teacher says he's doing great in all areas (except for when he forgets to take his meds, which is really quite obvious).  At least we know that the meds are still the right decision for him.

Harlie's conference was longer, of course.  And on paper, it doesn't look good.  But, that's the way she rolls anyway, I suppose.  She has always looked worse on paper.  And those that have seen her medical records before meeting her in person always comment on how shocked they are that she's doing so great.  And actually, if it happens the other way around, people are equally shocked to hear all she's been through.  So, for right now, I'm not letting it bother me.

So much of her challenge right now is language.  I'll give you some examples.  The other day Cooper said, "Mommy, that is really big!"  And I thought to myself, does Harlie know what "really" means?  And how do you teach that word?  Because no one taught it to Cooper.  See how much learning she missed by not hearing well for the first three years of her life?

But, then the other night, I was brushing Harlie's hair and teeth and getting her ready for bed when she said and signed "purple."  I said, yes, I see purple.  And then she said and pointed to her shirt, "Right here" and I could totally understand her!  And it occurred to me that we haven't taught her the words "right here" - on purpose.  How awesome is that???

So, when they are trying to teach her class that monkey starts with M - does Harlie understand "starts with?"  I asked her teachers that question, and they said they don't know.  That's what makes learning language in her situation so incredibly difficult.

I haven't been able to blog about the details - but I have been really stressed about Harlie's education this year.  It's been weighing on me more than I expected.  But, I have to say that I am now more hopeful than I have been since school started.  Hearing her "talking" has been incredibly wonderful.  On so many levels!

Okay, this has been way longer than I intended.  Ugh!  And I still have so much more to tell you!

More later!
~Christy

Getting better.

This week has been so busy!  And I haven't even left the house!  Monday I think I pretty much walked around in a daze.  Some of Tuesday, too.  Okay, okay - I'm still walking around in a bit of a daze.  And boy was I grumpy!  It's been easier the past few days to feel mad than usual.

But, things are getting better.  Harlie is definitely happier.  She was actually giggling today and I have no idea what she found so funny.  But boy, was it CUTE!!!  I would have given anything to hear that sound with no trach.  One day... That girl never ceases to amaze me.  She has every reason to be grumpy herself, but she's not.  So, I need to snap out of it!

Of course, a bunch of visits from friends have really helped my spirits.  When you're in the hospital, it is so easy to become a different person - an advocate, a doctor, a nurse, and a lazy, unhealthy eater.  So, I think I kind of start to forget who I am.  So, when my friends come over and they make me laugh, I start to remember who I am again and I feel better.  So thanks, friends!!!

Mrs. Katie, Harlie's preschool teacher, came over on Tuesday.  It was her first home schooling session and she said it went great.  Harlie was completely cooperative.  I was a little nervous though, because she wasn't quite so happy then.  But, she did great.

My sister came by Tuesday night and brought Harlie a Color Wonder lap pad.  She loved it.

Look at the concentration!

She drew a rainbow.  I should have taken a picture of it.  It was really cute.  Then today she found another use for the markers.

And, she's eating!  But, her belly isn't ready for it.  Boo.  Yesterday she ate several ounces of peaches and several helpings of Pediasure.  All total for the day (Tuesday) she ate just shy of 20 ounces by mouth.  And all seemed okay.  So, this morning, I fed her breakfast - pureed cream of wheat, peaches and Pediasure.  She did awesome and only argued a bit at the beginning and finished it all - over 9 ounces!

But then her belly got hard and swollen so Jennifer hooked up a vent for her g-tube (in the picture above).  And that helped.  But it took a long time for the food to empty from her belly.  I guess she just wasn't ready.  Darn it!

Traci, Harlie's physical therapist came over today.  We've been struggling a bit with some things so I thought Traci might be able to help.  Plus, since the surgeon said that Harlie could bear weight when she was ready, I wanted Traci to tell me what she thought.

Jennifer, Harlie and Traci getting some fresh air.

She had some really good thoughts and she will be back on Friday with a taller walker (Harlie's outgrown hers) and a stander to see if they can help her.  We also worked on the whole car seat issue (wow have there been a lot of discussions about that!) and the potty issue.  Traci thinks that when pain isn't an issue anymore, that Harlie will be able to stand and possibly walk some.  Wow, wouldn't that be great?!

Well, it's late, and I've been up since 3:30am.  Harlie had a bit of a rough start to the day.

Good night and much more later!
~Christy

Great Day!

Harlie had a GREAT day today!

Feeding Therapy - 9:30 - 10:30

Today Allison worked on self-feeding.  She used a three-section plate containing oatmeal, fruit and milk (high calorie Pediasure).  The goal is to teach her that each section gets a turn with no skipping.  Allison drew three circles on a piece of paper.  After a bite she earned a sticker to put in a circle.  After earning three stickers in a row, she earned a prize, which she got to choose.

Of course it wasn't as simple as all that.  She was hardly cooperative at first.  And it took a few other tries before we reached the sticker/prize plan.  She doesn't like to eat when we're feeding it to her.  So our biggest hurdle is that she lacks the motivation to feed herself.  But, when she saw the miniature slinky, she grabbed the spoon and took a bite!  WOOHOO!!!

She ended up eating 2.8 ounces total almost all by herself!  It really was great.  And even better is that we only have to try that at home two times by next Thursday.  Awesome!  That gives me some time to go and collect some prizes to help motivate her to take her bites.

The Grocery Store - 11:00 - 11:30

On the way home from feeding therapy, Brandy and I decided that we wanted a vegetable tray for lunch.    She suggested that we all go to the store together.  So, we did.  Right as we walked in, I saw one of those little kid carts.  Harlie RARELY goes to the grocery store.  So, we put her in front of the cart and away she went.  She was slow, but she walked the entire time with no complaints.  In fact, she LOVED it!!!!

We started in the produce and I picked out some cucumbers, broccoli, carrots and a red bell pepper.  Harlie was behind me and decided that we needed a green bell pepper, too, so she picked one out and put it in her cart.  Then she smiled.  Oh, it was so cute!

Then we headed to the canned fruit aisle.  She stopped and pointed at the jars of applesauce.  It was so cute to see her recognize a food that she eats!!!  Of course, we had to walk down the candy aisle.  Even if I don't get anything, I always have to walk down the candy aisle.  While I had stopped to check out some new chocolate, Harlie grabbed a bag of sweet tarts and put them in the cart.  Ah, we had to laugh.  She doesn't eat it - never has - has no idea what it is - but wanted to put it in the cart.  It was the prettiest bag - colored with purple and yellow and pink, etc.  Funny stuff.  They sure know how to package things to appeal to kids.

She got such a kick out of putting stuff in the cart.  And she loved putting the stuff on the belt to check out.  I normally don't care for going to the grocery store.  But she made it so fun.  And she walked the entire time!  It was great!

11:30 - 2:00

We went home, unloaded the groceries and then I headed to pick up Cooper from preschool.  We all ate lunch and then I put Cooper down for a nap.

At one point, I took Harlie to the potty.  She stood on the step stool and looked at herself in the mirror.  Then she touched her chest, right under her trach.  Then she pulled her shirt down - with both hands - to look at her heart scar.  After looking for a while, she pulled her shirt up to her trach (higher than it lays naturally) and then signed, "better."  Did she mean that it is "better" to cover the scar????  Seriously?  I signed "pretty" - but then I felt kinda stupid for doing that.  I don't want her to think of her scar as ugly or that it should be covered up, but I also don't want to discount her feelings.  I tried to come up with something to call it.  I met someone years ago that called her son's scar his miracle line or magic line or something like that.  So, maybe we'll call it her miracle mark or something.

Then she got down and left.  I told Brandy about it and then she told me that earlier in the morning when Brandy was brushing her hair and teeth, that Harlie examined one side of her face in the mirror, and then slowly turned to look at the other side.  She did that several times.  So, it appears that she has noticed that they aren't the same.

Ugh.  I don't want her to be ashamed or embarrassed or feel anything negative about her scars or her facial features.  Every scar has allowed her to live and be happy.  I want her to be proud.  But I know she is far too young to understand any of that.  

That wasn't so great.  

At 1:45 I went to pick up Murphy from school.   Then we came home to get Brandy and Harlie for more therapy.   And my Mom came over to watch Cooper.

Physical Therapy 2:30 - 3:30

She did great.  Last week, Traci had a hard time getting Harlie to cooperate and follow instructions.  After a few minutes Traci looked at me and said, "Is her hearing aid on?"  I checked, and nope.  Sure enough the battery had died.  She was much more cooperative after I put a new battery in.  Go figure.

This week she listened and followed instructions.  She is so happy to go to physical therapy now.  She really has a lot of fun there.  Today Traci had her walk on the treadmill with an incline.  She did that for five minutes!  She also does exercises and weights.  She's so cute when she works out.

While Harlie was in therapy, I sat out in the waiting room with Murphy working on his school work and reading.  As luck would have it, Thursday is also Murphy's library day at school.  So he always has new library books for us to read while we wait.

During PT, Harlie's new speech therapist came out to ask me some questions.  While I was talking to her, Murphy said he needed to go to the bathroom.  To get to the bathroom there, you have to go through a door, then there is another room that has the bathrooms, a water fountain and a long hallway that leads I don't know where and an exterior door.

I have no idea how much time went by from Murphy leaving till I heard his voice.  At first I thought it was another patient there crying.  But it sort of sounded like Murphy.  So, I thought he had left the bathroom and gone back to where Harlie and Brandy were.  Then I realized that the voice was screaming "Mommy!!!"  So the speech therapist said, "Oh no, he might be locked in!"  So, I got up and ran back there and yes, he was locked in.  He had been screaming for me and banging on the door.  Oh, he was SO upset!!!  I felt so horrible!!!!  I had no idea how long he had been locked in there!

He said he saw the EXIT sign and tried to get out that way - thinking he could just go around outside the building and come back in through the front door - but that door was locked too.  He could have unlocked it himself by turning the deadbolt, but he must have been panicked by that time.  Oh, geez!  Poor kid!!!

Speech Therapy 3:30 - 4:15

Harlie's new speech therapist is Becca.  And I really think they hit it off.  She was very engaging and within minutes, she had Harlie saying words.  She was wearing her speaking valve (PMV) and some words were so clear that I could understand what she said by just hearing her (and not looking at her sign).  Like - yellow, open, bye-bye, eye and ear.  There were more, but I can't remember right now.  Bummer.  She really did great and it was wonderful to hear her talking so much!  I couldn't completely focus on her because Murphy was reading to me.  But, I could totally tell that she was having a good time and hopefully learning at the same time.

Her therapist has to get authorization so I don't know if that will happen in time for next week's therapy.  I hope so, though, because I really feel like it was a good session.  Becca said that Harlie said 20 words total during the session.  Awesome!!!

My chiropractor appointment 4:30 - 5:00

Luckily, my appointment was practically around the corner from Harlie's therapy.  So, we put a movie on for the kids and Brandy sat in the car with them while I went in.  And I am so happy to report that I can start running again - small mileage, flat terrain, easy running.  I'll see how that feels and then go from there.  I have a really good feeling that I will be fine.  I just have to remember to take it slow and not increase my mileage or speed too much, too fast.

Well, that's it for tonight.  I am falling asleep while writing this.  And tomorrow is another busy day!

Goodnight!
~Christy

Another great moment!

Today was another successful day of Harlie wearing her PMV.  It is SO exciting!  And not just for talking.  Wearing it causes a chain reaction of positive things like a better, stronger swallow, less secretions - which means less coughing and less suctioning (can I get an Amen?) AND communication!!!  Woohoo!!!

So, tonight was back to school night at Murphy's school.  I walked there and Tom stayed here with the kids.  On my way there Tom called my cell phone.  He said, "Listen to this". And held the phone up to Harlie and I HEARD her say - CLEAR AS A BELL - "My turn".  It was the coolest thing EVER!  I couldn't believe it was her!!!  It was SO awesome to hear her on the phone!!!!  What a great moment!!!

Earlier today she said "dinosaur."  I need to get that on video.  She is very faint when she says it - almost a whisper.  But it is SO cute!!!

Although she is making HUGE strides (I can only guess that progress will really start to take off as soon as she realizes what her talking can do for her) communication is still difficult.  Tonight after we put her to bed she started crying.  She never does that.  She really never cries unless something is hurting her or she didn't get what she wanted (and that usually only lasts a few seconds).  I went up there and I'm assuming that she was scared - but that's really only a guess.  She appeared to be looking at something in particular - but I couldn't figure out what it was.  I'm thinking that maybe it was a shadow that she could see before I turned the hall light on and that she was looking for it when I was there.  I don't know.  At any rate, she wouldn't use any signs or her communication device to try to tell me what was wrong.  We just sat there for a few minutes and she finally laid back down.  It was weird.  I hope she didn't see dead people. Because that would be freaky.

Today was Therapy Day.  I forgot my camera.  But I just realized that I never showed you the pictures from last week's physical therapy appointment.  So, here's a video:

Personally, I was pretty impressed she could do that.

Here's Harlie and Traci scooting around...

And Traci tested out a lift for Harlie's right shoe.  You might remember this photo from a few posts back...

As you can see, her right foot has to be on it's toes in order for her to stand "straight."  Since her hips are crooked it gives the appearance that one leg is longer than the other.  So, we are going to work on getting her a lift for the "shorter" leg.  Unfortunately, it looks like she's going to need one that is about a half-inch or more thick - so it will be too thick to fit in her shoe.  So, we'll probably have to get one that goes on the outside of the shoe.

Okay, that's it for now.  Just wanted to tell you about Harlie's talking!!!!  It is so fun to type that!!!  Who knew that she would be doing this now????  Crazy!!!!

Thanks,
Christy

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!

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.

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

Eligibility Meeting

So, Harlie's eligibility meeting was this morning. I was a little anxious. I've heard some bad things about special education services in my county. Plus, I had no idea what to expect.

Well, I am very happy to tell you that it was as wonderful of an experience as that kind of thing can be. There were six of us total (counting myself) and everyone was very nice (including myself). We went over the reports from the speech and physical therapists that evaluated her over a month ago. I have to say that I was very impressed with the detail in the reports. And they seemed to very much remember the evaluation, which I thought was good.

They showed me her scores from the "testing." The average range for kids is between 85 - 115. Her Total Language score was 69, Auditory Comprehension was 73 and her Expressive Communication was 71. Clearly all lower than the average range. I know why, of course, so the numbers shouldn't bother me. I know she's smart, she just can't get it out of her head yet. But seeing the numbers, being in a room discussing her challenges, and hearing "this states that Harlie is eligible to receive special education services" just made me so sad. I am so happy that Harlie is doing so great. She's far exceeded every one's expectations. But there are moments when I just wish that things could have been different. Better. Normal. Like what most people get to experience. But clearly, that is not the way it was supposed to be. Anyway, so I cried a little bit. Which made me feel so stupid. I tried to hide it, but then they handed me a tissue. Part of it was sadness, but part of it was relief that we all seemed to be on the same side, wanting the best for my sweet girl, and that I wouldn't have to fight for services for her. Wow.

And as an added pleasant surprise - she also qualified for physical therapy, too! So, the speech therapist recommended that she receive two 30-minute sessions per week and the physical therapist recommended one 30-minute session per week. That's way more than I expected. I was just hoping for one 30-minute speech therapy session. So, I'm thrilled. Now the tricky part will be scheduling all of this therapy! Hopefully she will be able to receive therapy at Murphy's elementary school, which is at the end of our street (walking distance). That way Brandy can walk her down vs. me having to drive her some where else.

Oh! And the physical therapist that was there suggested she get some adaptive seating during her speech therapies due to her spinal issues. She said that when she observed her last month that she noticed that she "side sits" and that she's clearly compensating for her curved spine and rotated hips. So, she said it's possible that sitting in a seat for a longer period of time might not be possible for her. WOW! That totally makes sense! Not to mention that my speech therapist has had some difficulty keeping Harlie in one place during her sessions. That would totally explain her "ants in her pants" behavior!!!! WOW! So, they said a physical therapist will have to observe her speech therapy session to see what they think. They said if she's having to work extra hard to sit in a chair that it might not allow her to concentrate on speech therapy because she's uncomfortable or just working so hard to stay balanced. Seriously - WOW!

And they said that we need to have an occupational therapist evaluate her at some point, too, so we can address those areas if needed. The only occupational therapy she's gotten so far has been concentrated on feeding. So, they want to see other areas of OT like fine motor skills. Aren't you impressed? Because I am. Very thorough they were. So, now she has an IEP (Individualized Education Plan) that spells out specific goals we want her to accomplish. And it will be reviewed in six months.

Anyway, beginning a few weeks into September, Harlie will have a total of SEVEN therapy sessions per week! Yes, in FIVE days she will have SEVEN therapy appointments:

2 one-hour feeding therapies
1 one-hour speech therapy
2 30-minute speech therapies
1 one-hour physical therapy
1 30-minute physical therapy

And somehow I will try to keep two half-days per week untouched for preschool. Ugh! I really don't know how I'm going to juggle it all. And to make things even more complicated I am trying to get Murphy into a regular swim class that meets twice a week. Oh, and I'm training for a half marathon so I have to run three week days per week (long runs on Saturday) - no joke. I guess I will just see how it all works out, and then go from there. They said that I should hear from the school therapists by the end of next week to find out what times they are available. Until then, I'll just keep my fingers crossed that they have times that work out for us.

So, I will leave you with a quote I found in my calendar the other day. I'm thinking that it fits pretty well with today's post.

Don't ask for a light load, but rather ask for a strong back.

~Anonymous

Ahhhh, this is the life!
~Christy

Lots of stuff (and a new video)

So, what's been going on since my last post....

Murphy finally had his 5-year check up on Monday. He has really grown! He weighs 43.5 pounds and is 44 inches tall. That puts him in the 75th percentile for both. I was so surprised! Those are his highest numbers ever!

He's also started swimming lessons again. He is loving it! And we are loving him loving it. After the debacle of the YMCA's sports camp (which he hated) we are very grateful to see him like an activity. Did I mention that on soccer day (of the sports camp, which introduced him to several popular sports) he said he didn't like it because the other kids kicked "his" ball? Nice. Anyway, he loves swimming and he is now working on freestyle (complete with side breathing) and the backstroke. I'm working on a video to show after these lessons are complete (next Thursday).

Today his normal instructor (same one from the last session) was out and her brother was filling in for her. On the way home I was just making conversation and I asked him who he liked better - Grant or Camille? I was just curious to see if learning from a guy or girl made a difference to him. Anyway, he said, "Camille, because she's like a pretty girl." And the "like" in that sentence was a valley girl like if you know what I mean. Like, I'm so sure.

Cooper had an exciting event... he took his first steps on Sunday (when I was working, of course). I worked Saturday and Sunday for the first time since April and he chose those few hours to walk! But he's walked since then, a few times each day. He just turned 10 months! Murphy was 13 months when he started walking, and well, Harlie can't be compared, of course. So, I was surprised at his early start. I guess he feels like he's going to get run over if he doesn't get up and about. Hopefully I'll catch some video soon and post it.

Harlie's had feeding therapy twice this week already (with her therapist, I mean). Allison (her therapist) is trying to work her in anytime she has another opening. She is really doing great. She's definitely exhibiting some behavior issues, but still making progress. Allison wants to start working on her volume. She is consistently eating over two ounces at each feeding (even at home). And she said if she starts eating three ounces per feeding, we have to have another appointment with a nutritionist to start a plan to wean back her tube feedings and increase her oral feedings. Right now, with her tube feedings and her oral feedings (at least two per day, sometimes three) she should be gaining some good weight. But it's probably too much for her long term. We need her to be "hungry" for her feedings, so it only makes sense to hold back a little volume from her tube feedings.

And, today - at both feedings I gave her, she ate three ounces!!!!

I have started pureeing foods (what a learning curve that is!). For breakfast today, she had some pancakes with strawberries, syrup and milk (and a side of yogurt and juice). And for dinner she had mixed vegetables (broccoli, cauliflower and carrots) and a side of yogurt and juice. Out of both feedings, she only spit back out a total of three bites. The pureeing is an ordeal - it certainly is NOT easy. But, it's worth it. Although on the second day the blender ate the plastic ring that makes a seal. So now I have to find some replacements, but until then it's just going to have to be a little messy. Oh well.

Learning how much liquid (and what kind) to put in there takes practice. Right now there's a whole lot of opening, testing, adding a little milk or water, blend again, repeat, etc. But after more practice, I think I'll get a little faster, which will help. It's just that by the time I make her food, pour it into smaller bowls, mix her juice with thickener, weigh everything separately in grams, get out the timer, then feed her (we're up to 25 minute sessions now) it takes 45 minutes! And that's if I don't get interrupted (which NEVER happens). And I've found that it's best to feed her when there's not a lot going on in the house. And that makes it tricky, too. Most of the time my house is a little crazy.

I finally ordered her food thickener, which has helped. I was limping along with a dwindling supply, which made me ration it, instead of using it as necessary. But now that I have my shipment, I can thicken away to my heart's content. The other night we had some cantaloupe and I pureed that. But that needed some thickener. And she ate two ounces of that. It's been fun to give her some real food. Although I have to get over some of my fears. I thought for sure that she wouldn't even think of eating the mixed vegetables (but she did, twice!). And after the trouble and time of pureeing it, it is a little frustrating when she won't eat it. She wouldn't eat the beans I pureed the other night. In fact, she wiped what was left on her tongue off with her bib. Oh well. Don't know till you try, I suppose.

Today she had physical therapy. We've upped her frequency back to once a week till she fully recovers from heart surgery. She is finally walking up and down the stairs some (she flat out refused till just a couple of weeks ago). It is still so hard to know when she won't and when she can't.

And it's always interesting to see what Traci will use to get Harlie to work. One of the things Harlie won't do is walk down/up our driveway. It is a hill and she's uncomfortable going up or down it. So, she found something to entice her to walk it.



Ahhh, I can't stop laughing at the baby tumbling out of the cart. It's terrible, I know. But so funny. I hope you enjoyed it, too!

Thanks for reading!
~Christy

We're keeping Traci!

Just a quick post to say how happy we are that we get to keep Traci, our physical therapist! WooHoo!!! She got a job with a company that contracts with the county, so she gets to keep Harlie as a patient. We are very happy for her - and us! Now if we could just keep Beth...

More later!

~Christy

Funny Video and Therapy Change

So, I finally got the video problem figured out. It was operator error - but I'm learning. Harlie just loves her little brother. She's pretty much obsessed with him. When he cries, she drops (literally) whatever she's playing with and runs to his side. The other night I had Cooper on the floor doing tummy time while I filled his bath and of course, he was crying. Well she came running from Murphy's room, dropped to her knees and flopped on her belly on the floor so she ended up being face to face with him. Her movements were so fluid, like she's done it a hundred times before. It was hilarious. And, I'll give it to her, he stopped crying. Anyway, here are some videos of her playing with him.

And don't you just love the way she listens? Now I know she only has one ear and all, but geez! I just have a feeling she's ignoring me...

Anyway, I'm pretty bummed about a change that's coming. To bring you up to speed: the county we live in provides "early intervention" to kids with special needs to help them develop and get them the help they need. This service is provided until the child turns 3. The therapists come into the child's home, called "natural environment" to help the child feel comfortable so they can maximize the results from therapy. I also think it is to help the families because most of the kids have a lot of difficulties and it is really hard on the families with so many appointments and all. The county contracts with several different facilities to provide the services. It really is extremely confusing once you get into it.

Anyway, a few weeks ago Harlie's speech therapist (Beth) told me that the company her and our physical therapist (Tracy) work for is closing it's pediatric services. So, they are out of jobs, which means we can't keep them as her therapists anymore. She said that if they are to get a job with another company that the county has a contract with to provide early intervention services, then we can stay together. So, I was very hopeful that would happen. But, the county needs to find Harlie other therapists that are available - just in case Beth and/or Tracy get jobs elsewhere. Harlie NEEDS these services - period. And I got a phone call last week from my services coordinator telling me that they found Harlie 2, one hour slots with a speech therapist (one hour for feeding and one hour for communication per week) and a slot with a physical therapist. The only problem is that we have to go to their location for the services. They cannot come to our house. Budget cuts. Great. As if our schedule wasn't hectic enough as it was...

So, not only will this be way inconvenient, but we have to change therapists! Tracy has been with Harlie from the beginning! And Beth has been with Harlie for more than a year! That's a lot of bonding and trust developed - and that's essential to making good progress - especially when it comes feeding! And that bonding and trust is not just between Harlie and them - it's also between them and ME! So much of our therapy also centers around teaching me how to get the best out of her. It's really not as simple as regular parenting. The line between behavioral issues and true medical issues can be very blurry and me trusting them with their advice is absolutely essential to her progress! So, I'm just sad. Now we'll have to start all over.

Well, that's all we have time for today. Come back tomorrow and I'll have something else to talk about.

Take care,

Christy

Baby and Therapies

Hi everyone. Things are still going here - no baby yet. Can't believe it. Never thought I would go this long, really. But not really surprised that I will get to experience the whole spectrum of different pregnancies. One 5 weeks early and water broke, one I was afraid for the pregnancy to end knowing she was safer in the womb than in the world, and this one - the never-ending, completely normal, uneventful, I'll be pregnant forever one. They do say that every pregnancy is different...

I saw my OB doc yesterday and she wants to induce me on Sunday if I don't go before then. I really didn't want it to come to that, but I want to do what's best for the baby and the thought that we could finally meet the little one in just 5 days makes me happy. Plus, with our nursing situation, planning has HUGE advantages. We are going to pretty much need 24-hour nursing care (for Harlie, I mean) while I'm in the hospital and I only get so much per week. But, now that I'm thinking about it, I do have some respite care that I haven't used yet, so that will be fine. It's just that each nurse can only work so many hours. Brandy would definitely do more than 40 hours in a week, but they won't allow it. And one of my other nurses (Dawn) works during the day elsewhere, and the third (my friend, Jennifer) has 2 kids and their schedules to worry about. So, planning really would be very helpful for us all.

Well, Harlie is doing great with her walking. I can't believe how much it has changed her! She is so much more confident in everything else. She is really starting to behave like a typical toddler! You know, she wants up, then she wants down, etc. Whereas she used to be completely content being held forever. She walks every chance she gets now and when she falls, she doesn't cry (that used to set us back days and weeks!) she just gets right back up and keeps going. It has been so amazing and wonderful to watch.

We had physical therapy yesterday and Traci is working on getting her feet closer together when she walks. Right now her base is still far apart and she walks with her hands up high in a protective way. Traci said that in time her hands will come down and within a few months her hands will be swinging by her sides. Brings a smile to my face. Anyway, Traci had Harlie walk on a board that was about 6 inches wide or so to try to get her legs and feet to stay closer together. She did pretty well with assistance. But on her own she just put one foot on the board and the other off, which is still good for her balance practice. The cool thing is how cooperative she was to do it over and over again. She thought it was pretty funny.

We also talked about her foot braces. She definitely walks better with her braces on, versus off. So, we are going to have her continue to wear them all the time (when she's awake, I mean) through the winter and spring and re-evaluate how she's doing at the beginning of summer. Traci said that it's not just a strength issue, it has something to do with ligaments and we just aren't sure what they are going to do at this point. Hopefully wearing them another 8 months or so will get things good enough that she could sport some sandals in the summer on occasion with no braces. She has grown a lot this summer and she got the braces that she has now back in May so it looks like she'll be needing a new set pretty soon.

We also had speech therapy. That was a little more challenging. Beth tried to get a baseline of how her mouth and face are now as far as stretching and mobility goes. That way she can see exactly what we need to work on. There are some facial/mouth reflexes that we have that can be measured - and, well, Harlie didn't have some of those reflexes. But, that just tells her what we need to work on. And the good thing is that we will be able to really tell what our progress is down the road. And that's always good.

But, Harlie wasn't too happy about all the face work. I need to call Dr. Magee's office today. There is a bone in the right side of her jaw that is really sharp and I have a feeling that it will start to come through her skin soon. We found it a while ago and now her skin is bruised and it definitely feels sharper than it did before. When I talked to his office about it after we found it she asked me if it had come through yet and I said no. She said that he won't do anything unless it comes through. I guess he shaves it smooth. ugh. But we see him October 14th for our follow up so we'll see what he says then.

Anyway, my point is that I think the facial exercises, which makes her skin move around, hurts her because of the sharp bone. So, I guess I will continue to do what she allows me to and not force the ones that she really doesn't like at this point (which are the exercises that stretch the bottom of her face).

Well, I've written enough for right now. And I'm hungry. Again.

Take care,
Christy

Hearing Harlie

We had physical and speech therapies today. Both went great! Traci (her PT) is working on challenging her more with her walking and she did great. And in speech therapy, Beth worked with her PMV (speaking valve). Here's a little clip of her. WAY more sound and less whining!!! You can even hear her laugh a little. Music to my ears!!! Warning: you might grow tired of the videos.

Harlie Walked!!!

Today was so busy. I just have to share...

Took Murphy to school at 8:30, went to Harlie's pediatrician for her pre-op physical, dropped Harlie and Brandy off at home, went and picked up Murphy from school, took him to his dentist appointment, went to the grocery store, came home, got to be there for the end of physical therapy (which went GREAT), speech therapy was canceled, had lunch, put Harlie down for her nap, Murphy was settled down for quiet time (which ended up being a nap), left to go run errands to... our bank, Benjamin Moore paints to return something, Harlie's bank, back to the pediatrician's office for a form that I have to have for her procedure tomorrow in DC, then to the pharmacy to pick up her prescription, to the library, came home, realized I forgot some items from the grocery store that we needed for dinner, so had to go back to the grocery store for a second time and then came home and got to stay. Whew!

Well, I really need to go but I just wanted to tell you how great physical therapy was today. She walked 17 steps totally by herself. I don't know why she did it for Traci and won't do it for us. Other than she just wants to torture us even more than she usually does. Anyway, here is Brandy and I trying to get her to walk after Traci left. The sign she does is the sign for "change diaper." She really cracks me up.

Here is her walking:

I am still learning my new camera so I missed a bunch of good walking. Ugh. And Tom just told me that I had my setting at compact, so the video is really small. He changed it for me, so hopefully the next ones will be better.

Now I need to go and pack for our trip to DC tomorrow. We have to leave at 5am. I really hope I get a decent maternity leave so I can get some rest. haha At 4pm today they called to tell us the time to be there. Then they told us that she would have to stay for 24 hours. I about had a cow. I did NOT want to stay up there overnight. So, I e-mailed her doc and hoped that he had his e-mail go to his blackberry so he would get it in time. He did and e-mailed me right back that he would release her the same day, so not to worry. Whew! I was very glad to hear that. So, hopefully all will go well and we can hear some of her voice tomorrow!

I'll let you know how it goes...

Take care,

Christy

She can stand!

Okay, first of all - just in case you are curious. The Sharpie "drawings" on their legs came off. We looked it up on the internet and found that baby oil was recommended for removing the ink from the skin. And what do you know - it worked. So, for all of you with young children - you might want to store that hot little tip in your memory bank. Or you could just better supervise your kids. Whatever works for you.

So, we had physical therapy today. It went really well. Traci got her to walk a lot. She definitely CAN do it, she just hasn't realized it yet. She's taken at least 10 steps on her own. She is still very scared and does not like to be unstable. One thing we've been working on for a while is teaching her to stand up without holding on to anything. Traci thinks that once she gets that, it will help her realize that if she falls, she can just get back up. So, as time has gone by, she has seemed a little more cooperative with it. And today she did just great.

So, I'm getting the kids ready for bed and Harlie starts goofing around on the floor. Laying on her back and just doing silly things with her legs. It is SO nice to see her do some normal toddler things. I can really tell that she is getting stronger and stronger. Anyway, Murphy comes in and they're playing and I'm measuring out Harlie's meds and all of a sudden Murphy says, "Look Mommy, Harlie's standing!" And sure enough - she was standing all by herself, clapping and smiling. I couldn't believe it!!! That is the first time she's ever done that completely on her own!!! I am so excited!!

Of course, she sat right back down. But, Murphy asked her to stand again, and she did! So, that time I got to watch her. Then once she was up I told her to walk and give me a big hug - and she did!!! I really hope she'll do it again tomorrow so I can get it on video.

We also started our new schedule with our speech therapist, Beth. She has taken over Harlie's feeding trials and will continue to do her speech therapy as well. So, she'll be coming twice a week (an hour each) from now on. Harlie is doing well with the oral trials - it just takes more patience on my part than I could possibly put into words.

I've known for some time that it will take years for her to be able to eat by mouth - especially enough to lose her g-tube. And I'm fine with that for the most part. I've accepted it. But the trials are SO frustrating. And I mean, frustrating that I can't get her to swallow. It's not something we can just make her do. I can keep up with all of her doctor's appointments, order her supplies, give meds on schedule, make her walk, clean her wounds, follow doctor's orders, etc. But I cannot make her swallow. I put baby food in, it comes out. I squirt thickened water in and it comes out. And that's what we need to do to get her where she needs to be. Each day with the stretches, and food presentations her tongue is getting stronger and stronger, but, it is a slow process. One that you can't see.

So, three times a day, I have to make myself sit down and do what I'm supposed to do. Even though I hate it. There. I said it. I hate it. I hate that she can't eat by mouth. I've hated it from day one. I hate little shirts that have cute little cupcakes or ice cream cones on the front of them. I hate that she doesn't know what a cookie tastes like. Or how to lick a lollipop. Or how to lick her lips for crying out loud! And next month she'll have another birthday and the cake will mean nothing to her. This is when I need patience. This will all happen for her - one day. Just not anytime soon. And if I don't sit down with her and do what I'm supposed to do each day, it will take even longer.

Don't get me wrong - it's not all bad. I'm not all gloom and doom about her feeding trials. Granted, I hate that I'm dependant on medical equipment to get food into her belly and that she is missing out on so many good things that food has to offer. BUT - there are many things that are really good for her.

1. She is not orally aversive. This is huge. And it is because we have worked so hard from day one to make sure that she puts things in her mouth. And we've done mouth exercises. And we've put food in her mouth - so she's used to that, even though she doesn't know what to do with it once it's in there. So, all the oral trials we've done so far (for the past 18 months) - even though we couldn't see "progress", we are now reaping the benefits.
2. She is a willing participant. Really. She is. She wants a spoon and she wants to feed herself. She doesn't seem to mind what the food is, either (green beans or bananas). Does she taste? I have no idea. She wants to "drink" the thickened water - even though that has no flavor at all. Maybe she just likes the way it feels. Maybe she just wants to be like everyone else. I don't know. But, she wants to help and that is huge.
3. She chews. I know, that sounds strange. But, when she puts a rubber toy in her mouth, she chews on it - just like she should. And chewing could have been like the swallowing. Meaning that we could have been in the situation where she didn't know how to chew. But, luckily, she chews (or bites down I should say) and likes to.

So, I just need to concentrate on all the good things we have going for us and be patient. And diligent. And energetic. Okay, maybe that's going too far. At least for the next few months. Let's just stick with patient and diligent, okay?

Take care,

Christy

Murphy's Surgery and Harlie took some steps!

Murphy's surgery went "well" today. Although I'm not so sure he'd agree. He is not very happy about the pain. But who could blame the little guy? It was very strange to be there with him and not Harlie. The pre-op questions were a breeze!

And he was so good! I am so proud of him. We had to wake him up at 5:45, get him dressed and in the car and he didn't complain once. Of course he couldn't have anything to eat or drink - and didn't complain once about that, either! Unfortunately, we had to wait a long time for them to call us back - after 8am. And they finally took him to the OR at 9am. We said good-bye and the only thing he said was, "I don't want to do this" while holding back tears. I was so impressed with him!

The doctor said that each procedure would take about 20 minutes, so I was expecting to hear something within the hour. At 10am we got a call and the nurse said, "So we got started about 5 minutes ago." What? I had to ask, "What have y'all been doing for the last hour?" And she said "prepping." Okay. So I asked if he cried and she said no that he was just talking to all of them and playing with the mask. She said he was really good and funny. Well, that's good.

Then an hour later the doctor came out and said he did fine and everything went well. He explained his care to us and then we got to go see him. He was definitely not happy, but he was hanging in there, trying to be good. We got him home and he promptly threw up on the couch and Tom. Yeah, he wasn't feeling too well. I shouldn't, but I have to laugh. It's always Tom he throws up on. Well, I got more than my fair share with Harlie, so I don't feel too bad.

The rest of the day Murphy sacked out on the couch watching movies. Once I got some crackers in him, he started to feel a bit better. He is definitely feeling some pain. Ugh, the poor guy!!! It broke my heart when I had to make him walk to the bathroom. But we survived.

Of course today was Harlie's physical therapy day and Brandy said that it was her best PT session ever. And I missed it! Ugh! Harlie took 7 steps unassisted!!! My PT said that she thinks it is very possible she'll be walking by the time the baby is born. Wow. Would that be crazy great, or what? After Harlie woke up from her nap we had her walk between Brandy and I and she did great. So, hopefully it will just get better and better from here on out.

Well, it was a long day, so I'm turning in.

Take care,
Christy

Quick One...

We had speech and physical therapies today. Both went really well. In speech, Beth got Harlie up to four cards with the PECS. Beth brought us a 3-ring binder with pages with velcro in it, so the picture cards can be stuck to the pages. There is also velcro on the cover, so you can pull just the cards you want to focus on for easier access. Harlie is definitely scanning all the pictures and choosing the one she wants. At one point, she chose a card and pulled it off the velcro and then realized she didn't want that toy, so she put it back and then picked a different card and handed it to Beth. We are going to continue to work with just four cards for the next week to make sure she's got it before going up anymore.

In physical therapy, she walked a lot. The walking was getting really bad and I was afraid that it was starting to be too negative for her. But a few nights ago I realized that she will walk between Tom and I if we read her one of her favorite books. I read a page and then pass the book to Tom and she walks to Tom to have him read a page, etc. It has been working great! She doesn't even seem to notice that she's working! Traci has been saying that we can't make her, she has to have something to motivate her. So, it looks like we found something for the time being. So, when Traci got here this morning, we brought out the book and started to work. She's definitely not too happy about having to walk to get it. The praise we give doesn't seem to do too much to make it better, either. Oh well. I guess the prize of getting the book will have to do. The BEST was when Traci put the book on the ottoman. So far, she's only walked to one of us, and we catch her if she falls forward (which she does a lot). So, I was VERY nervous about her walking to an object without someone being there to catch her. Plus, I think we are all very nervous about her hitting her face. Well, she walked to the ottoman just fine! I am so happy about that! It's like she knew that she couldn't fall forward, so she just put out her hands and went without any trouble. She definitely CAN do it. She just needs to get over her fears. Traci said that it will help if she knows that she can get back up if she falls. And that means that she has to be able to get up without grabbing onto anything. So, that's our "assignment" for the next few weeks. We need to work on getting her to get up into a standing position in the middle of the floor. It's so funny that just when I think that walking anytime soon is impossible, she has a good few days and I start to think it COULD happen! In her development, a lot can happen in three months. It would be so great if she could walk by September!!!

Well, July 1st marks four weeks post-op. Hard to believe how fast it has gone by. Just five weeks to go to get her wires removed! In just one more week more time will be behind us than in front of us. I am getting so anxious to see what she will look like. And to start oral trials again. Unfortunately, the soonest I could get her in to see her ENT in DC isn't until September 5th. So that means that after her wires come out (Aug.5th) we will have to wait another month to find out if the surgery was successful enough to make a difference in her ability to breathe through her mouth and nose. Ugh - talk about agony!!! I just hope that Baby 3 cooperates and doesn't come early!!

Well, that's it for tonight. I hope you are all well!

Take care,
Christy

Bad day/Good day

Okay, the good stuff first…

We had another appointment with Harlie’s cardiologist for a second fetal echo (ultrasound of the heart) on Baby #3. And everything looks GREAT! He said that they got some great pictures and we can stop worrying about this baby’s heart now. I wasn’t really THAT worried since we got a good report six weeks ago, but it is very comforting to know that this hurdle is safely past. YAY!

Our next hurdle is three weeks from now. We have another appointment with my perinatologist for another ultrasound. Hopefully everything will look good then and we can relax the rest of the way (yeah, right).

So for the bad stuff...

So, for physical therapy today, we met Traci at the play area at Regency Mall. We were thinking that being there would help motivate her to go from one area to another – enough to WALK between the areas. So, Brandy, me and Harlie got there a little early since it takes a while for Harlie to walk anywhere with her walker. Harlie will go really fast for a few feet and then stop and not move. Then she’ll go again – stop and start, etc. I don’t get why she won’t just walk a steady pace like a normal kid, but that’s just one of my many unanswered questions.

So, we’re trying to get her in the doors (there were three full sets – so plenty of other options for someone not patient enough to walk behind Harlie). And for some reason, everyone stacks up behind her. Even though it shouldn’t, it puts pressure on me – and I’m sure she can feel it, too. I finally tell the people behind us (who are blatantly staring – with NO shame) that they can go around her, please. They do, but then STOP, yes, STOP to stare and watch her. Now, I try to give people the benefit of the doubt – maybe they are just so overcome by her cuteness that they want to REALLY soak her in. Of course, as much as I wish that were true, I cannot make myself truly believe that. Odds are they’ve never seen a kid like her and they just want to figure her out a bit. Either way – I wish they wouldn’t be so ridiculously obvious about it. Talk about making me feel weird! And I can only assume that Harlie feels the stares, too, because she absolutely REFUSED to walk after that. And although she is only 21-22 pounds – there is NO forcing her to walk. Period. Gee, thanks staring people. And thanks Mom and Dad, for raising me right and teaching me NOT to stop and stare at people who look a little different. I mean, seriously, how in the world could they think that is acceptable behavior???

So, I pick Harlie up and we go to the play area. Harlie started crawling on the stuff, completely enjoying looking around at all the kids. The kids started gathering around her, just staring at her. One mom sat down next to me and her daughter (pointing at Harlie) asked her “What’s that thing around her neck”? She said “It helps her breathe”. Her daughter asked why and she said “because some people need help to breathe”. Just hearing that be said out loud and watching all the kids just stand there and stare at her – all the while Harlie not having a clue what’s going on – made me start to cry.

My child needs help to breathe. My child looks different. The harder I tried not to, the harder it came. It’s the innocence of Harlie not knowing, that tears my heart into a million pieces. One day she’ll learn. She’ll know why they are staring. And she will cry because it’s her heart that hurts. I know it could be worse. I know better than most - now that my eyes have been opened to a whole new world. But, it only eases the pain slightly. The bottom line is that I will still need to do what I need to do to get my daughter through the tough times. Even though it COULD be worse, nothing changes the way it IS.

Well, Traci got there, and I eventually pulled myself together. I can’t help wondering if Harlie could feel something with the staring, because she simply would not cooperate with the physical therapy. She flat out REFUSED to walk – no matter what we did. It was so frustrating. Especially when we know that she CAN do it. I suppose if people staring makes ME feel self conscience, than maybe it has the same affect on her.

That mom that explained to her kids what the trach was, was pretty nice. Nicer than most in that most people completely ignore me – despite what their kids are doing around Harlie. She said she was sorry if her kids upset me. It’s more complicated than that, but I appreciated her kindness. But as we were leaving she said something like she won’t walk because she’s “spoiled”. She didn’t mean it in a mean way, but it definitely hit a nerve for me. Spoiled?! First of all, if there’s any kid that deserves to be spoiled – it’s her. But, we don’t spoil her. In fact, I am harder on her than any normal mom is on her healthy kids. Every day I make Harlie do something she doesn’t want to do. Something that she’s afraid to do. Something that SHOULD come easy to her – but doesn’t. It is not easy to push your child like I do. Thank God most of the time, I am fine. I am happy. I really am. I have a lot to be happy about. I know more than most what a true gift a child is – healthy or unhealthy. But some days, some situations just hit me harder than usual. And I’m guessing that the pregnancy hormones aren’t helping me any.

Luckily, after I dropped Harlie and Brandy off at home, I met Tom at my doctor’s appointment and that went well, so that put me in a much better mood.

Oh, this weekend I e-mailed Robert Barron, the one who does the prosthetic ears in Northern Va. He is the one that used to work for the CIA doing disguises for their agents. He now does prosthetics - ears, noses, eyes, hands, etc. Fascinating stuff. Anyway, on his website you fill out a "contact me" form, which I did, just to find out when we should start thinking about Harlie's ear - and if we should go the prosthetic route, or reconstruction route. So far, Tom and I are thinking prosthetic for now and once she gets older letting her be a part of making the decision for surgery. Well, like I said, I just sent my request THIS weekend and HE, himself, called me TODAY! I couldn't believe it. Anyway, he said to call him back when she's five. So, that's that. I was just hoping that she would get an ear before Kindergarten. But, I guess we'll just have to see how the timing works out. Well, that’s it for tonight.

Take care,
Christy

Happy Halloween!

I hope you all had a great Halloween. The neighborhood was packed with kids! I think Murphy had a good time. His little legs can only take so much. I tried to get him to go and get more candy, but he just wasn't that motivated. Darn it. He sure looked cute in his farmer costume though. We took more pics, but I'll upload them tomorrow.

Harlie is getting her first molar. Well, I guess I should say it came in. Well, that certainly explains her increased drooling. And, perhaps, the not-so-great oral feeding trials lately. She is doing great in physical therapy, though. She is finally putting weight on her legs. I took some pics and will get them up soon. It was so exciting to see her behind one of those push toys. I had no idea she was ready for that. Traci asked me if we had one that was Murphy's and I ran and got it. I am very hopeful that she'll be walking by the time she turns 2.

Well, tomorrow we have an appointment for both kids to get their flu shots. Then next week Harlie goes to see her eye doctor and surgeon. I am anxious to see how her eyesight is compared to last year at this time.

Well, more later. Thanks for checking in!

Take care,
Christy

Halloween Carnival

On Saturday, we had a neighborhood Halloween festival and then Murphy had his Halloween Carnival at his school. So we got the kids all dressed up and took some pictures. I just couldn't wait till Halloween to post them. 

My neighbors gave Harlie the Click Clack Moo, Cows that Type book for her birthday. Well, Murphy loves it so I convinced him that he wanted to be Farmer Brown so Harlie could be a pig. I figured this is the last year I'll be able to do that. I thought they looked so cute together. 

The parties were fun and Harlie did great. We hardly had to suction her. 

Everything is still going well here. Haven't had much to post, which is a nice change for us. Harlie has definitely mastered the "throwing things off the high chair" skill. She seems to do it with more attitude than I ever remember Murphy having. She is doing great in physical therapy. I really am starting to see a lot of progress. Traci is starting to teach her how to pivot while sitting, sit up on her knees, and crawling. We're still very far from crawling (not sure that she'll ever really do that since she doesn't have the mobility in her neck to look where she's going). But, who knows. Maybe she'll surprise us, as always. 

Well, this will be a quick one because we have to leave soon to go to Mike and Marcy's wedding. Should be fun! 

Take care,
Christy