Tuesday, June 28, 2011

Murphy's Swim Meets

So, Murphy's had three swim meets now.  The first two I couldn't attend because I stayed home with Harlie and Cooper.  We thought it would be way too difficult with them in the crowd and chaos of a swim meet.  But, this time I really wanted to go and thought we could try taking the kids to see if it could work.  I hoped Murphy would have a good meet and I wanted to be there to see it happen!

As it turns out, Murphy has some sort of performance anxiety or something.  The swim meets completely stress him out.  When I asked him about it at bedtime one night he told me that he feels like he's going up on stage and everyone is watching him and he doesn't like that.  We've tried everything to help him feel more comfortable.  We've told him till we were blue in the face that it isn't a race against the other kids for him.  It is a race against himself.  We don't care how he places in the meet.  We just want him to make it across the pool without touching the rope or the bottom - and we want him to have fun.  That's it.

When you touch anything - you get disqualified, so you don't get a time.  Which means we can't show him how to race himself.  At this point, we just want him to get a time so we can show him how his times compare.

There are only six meets this summer.  And last night (Monday night) was his third meet and the first one at our home pool.  We were hoping that being in his own pool would help him feel more comfortable and less stressed.  No such luck.

And the whole touching the rope thing has us so frustrated!  To recap on that... he CAN actually swim the length of the pool without touching.  He just touches anyway.  No matter what we've told him, he still touches during swim team practice.  However, when practice is over, he will do it (since they remove the ropes after practice).  So, I told his coaches that he has actually made it across the pool, several times.

At Friday's practice, the head coach got in his lane and when Murphy touched, he picked him up and carried him back to the start and told him to try again.  Murphy touched the bottom that time.  Again, the coach picked him up and carried him back to the start and told him to try again.  Apparently, Murphy was able to figure out that he was going to work a lot less if he just swam to the other side without touching - and did it with no problem.  I really thought that was a turning point for him.  And I really, really wanted to see him make it across in the meet on Monday night.

He was so scared.  But we were all standing on the other side of the pool from him and he could see us.  He dove in and made it a little more than halfway when he touched that darn rope!  Ugh!  No matter how much I was willing him not to.  But he kept on swimming and didn't touch again.  Had he not touched the rope he would have come in fourth, I think (I think there are eight lanes).  Afterwards, Tom told him how great he did and how proud of him he was.  I was a little confused since he touched the rope.  But then Tom told me that during the last two meets he touched the rope like 15 times and came in last!  So, only touching it once (and not being last) was a huge improvement.

I really, really hope that at tomorrow's practice he doesn't touch that darn rope.  I need to ask if all the coaches could make him start over when he touches.  That seemed to get the best response out of him.  He certainly understands the difference between doing things the easy way or the hard way.

And even though having the other kids there was a ton of work, it was worth it.  And we're all going to go to the next three meets.  Hopefully, he will get a time for each one.  Oh, how great it will feel when he overcomes his fears and feels some success of his hard work!  His ego totally needs the boost of doing well at a meet.

His next meet is Tuesday night, July 5th.  I am hoping that at tomorrow's practice he doesn't touch the rope.  With a few days of making it all the way across consistently, I think the meet will go so much better.  Have no fear, I'll let you know how it goes.

Thanks!
~Christy

Ortho Appointment

Today we went to DC for another follow-up appointment with her ortho surgeon.  All went well.  As usual, they took some x-rays.  Harlie is so cooperative now and stands the way they tell her to and actually holds still.  I am so proud!  That seems like a "big girl" thing to do.

Her surgeon said her x-rays look good.  The hardware looks secure and is most likely fused together pretty good now.  She said that if Harlie had not gotten that infection (which forced her to remove some of the bone graft in the upper portion of the surgical site) she would let her come out of the brace.  Darn it!  It would have been AWESOME if we could've ditched the brace in this summer heat!

She wanted to see how Harlie moved without the brace and immediately she started acting all goofy.  It took all of two seconds for her surgeon to say that she needed to stay in the brace for another few months.  She said she's just too worried that the upper portion hasn't had enough time to solidly fuse together.

I asked her when she wanted to see Harlie again and she said in three months.  Three more months in the brace?!?!  So, I asked her if it would be okay to see her again in two months instead - so that if she felt comfortable then, Harlie could be brace-free for school.  Luckily she said that would be fine.  It's probably not that big of a deal.  Harlie doesn't complain about it at all.  But, the brace does make it more difficult for her to pull her pants up and down and it would be nice if she could do that by herself for school.  The brace comes down past her hips - which means her shorts either have to be under the brace or ride really low on her.  And all her shorts have to be elastic - button-up ones are harder for her to wear.

Anyway, I told her surgeon that Harlie points to her back at least once a day and signs "hurt."  She wasn't concerned.  I guess that's normal.  I just wish I could do something for her.

Since she seemed to be keeping her in the brace for good measure - I went on ahead and asked her if it would be okay to take the brace off for more than one hour some days - so I could take her to the pool.  And she said that would be fine.  She even said we could reduce her wearing it from 23 hours a day to 21.  WOW!  (Said sarcastically, of course.)  But, at least I have her blessing now for the pool, so I don't have to feel all weird about that anymore.

And add this appointment to another doctor visit that didn't include pain for Harlie.  Harlie didn't cry when we pulled into the parking lot (like she did for the last visit) and was completely fine and happy the whole time.

Thanks!
~Christy

Monday, June 27, 2011

Speech Therapy and her communication device

After our hearing appointment last week, we met a new speech therapist.  This is something I haven't been able to blog about.  So, to bring you up to speed, here's the low-down:

Since she's starting Kindergarten in the fall, I think it's imperative that she be able to communicate with her peers.  And they don't know sign language.  And, at home, it is getting increasingly frustrating - for all parties - to not know what she wants or needs all the time.  She is almost five years old (crazy!) and she has a lot of information in her head that she just can't get out.  

We were receiving one hour of speech therapy per week.  And because of the body cast and surgery, etc. it's been a while since that was consistent.  

So, I decided that I wanted her to get WAY more therapy - and I wanted it to focus on her communication device.  There is a physical therapy place (Hope Therapy) here that offers an "intensive physical therapy" program, where the patient goes every day for several weeks.  That got me thinking about doing the same thing (to a lesser degree, of course) with speech therapy.  So, I started calling some speech therapists to see if they had an interest in doing an intensive program with Harlie - focusing on her device - at least three times per week.  

Because of insurance red tape - this would never be approved.  So, because of the many wonderful, generous donators to The Harlie Fund (including the awesome Harlie Crew!!!) we have some money to pay for this service privately.  That will get us a lot more therapy - and a lot more freedom to do what we need to do to get her "talking" and having conversations with her device.  

I cannot tell you how incredibly excited I am about this!  And I cannot begin to tell you how thankful I am that we have been so blessed with people who care about Harlie enough to be generous with their hard-earned money!  Thank you so much for making this possible!  Just think - YOU are helping her TALK!!!  What an amazing gift!!!!  Words simply cannot express what this means to us!

And, as if that isn't great enough, we got super lucky and were able to hire Harlie's first speech therapist ever - Beth!  Woohoo!!!  We are so excited about having her back in our lives again!  

Beth called another speech therapist, Amy, and asked her if they could partner with this project.  Three sessions per week is a tall order for any therapist.  So, if they do it in a partnership, we are more likely to get all sessions in each week.  

And last week was our first week.  Harlie is SO ready to talk!  You show her where a word is on the device one time and she's got it forever.  I knew this already.  We've been using the device a lot more the last few months.  And she tries to build sentences completely on her own.  

Unfortunately, the larger device (which holds more words and has more options as far as past tense and ing words, etc.) would better suit her needs.  But we have to make this smaller one work for now.  This means a lot more programming time on the device.  So, just in case, if anyone knows of a Vantage Lite that someone is done using, please let me know.  As you can see, they are quite expensive and I don't think we qualify to get a new device for another three years, at least.

Last night I felt the difference between the two devices.  Cooper took a toy away from Harlie and she was upset and crying.  I knew she was playing with that toy earlier, and when I heard her crying, I saw Cooper had the toy, so I figured out what happened.  But, that's not always the case.  So, I wanted to show her how to tell me - using the device - that "Cooper took my toy."  But, there is no took.  Just take.  Which is clearly different.

It is amazing how much we learn about language development without even trying.  And when natural learning can't occur - how incredibly difficult it is to teach.  It is truly overwhelming.  But, luckily, she likes her device and is a willing participant.  So, I have high hopes!!

Thank you again to The Harlie Crew and all the generous contributors to The Harlie Fund for making this possible!
~Christy

Thursday, June 23, 2011

Hearing Appointment

Last night I capped her while she was sleeping.  She did terrible.  She clearly had difficulty breathing - and sometimes just stopped for a few seconds.  And it sounds like she was snoring really badly.  That's the sound of her upper airway occlusion - the base of her tongue.  So, I am seriously considering just skipping the whole sleep study thing.  Because if that's what she's going to do - it would be a big, fat waste of time and effort.

I'll deal with my disappointment later.  I don't have time right now.  And if I wait long enough my hope will somehow be restored.  I have no idea how that happens.  I just know it does.

Today we had an appointment with Harlie's audiologist.  This was our first time seeing her in months (since before her spinal fusion surgery).  We tried the bucket game for the first time.  Harlie wore headphones (with no hearing aid) and every time she heard a sound she had to drop a toy in a bucket.

Ann teaching her how to play.

On her own with headphones.
I was a little worried when her audiologist had to go and get some help.  Ann stayed in the sound booth (the quietest place on earth) with her while her co-worker worked the sounds and microphone.  I guess Harlie didn't feel like playing any of their games today.  It's difficult to tell if she couldn't hear, or just wasn't motivated.  The thought went through my mind that maybe her hearing is getting worse.  I'm afraid that is not news I could handle very well right now.  But Ann said that she didn't think it was any worse than before.  Whew!

They adjusted the volume in her hearing aid, making it louder for her.  I really hope that's not a bad sign.  Ann said that we had to adjust it slowly in the beginning because she wasn't used to hearing that well.  But now she's gotten used to it, so it's normal to have to increase the volume.

We talked about a bone anchored hearing aid (BAHA) for her left ear (the one that's absent).  She tried to test her with one, but by then Harlie was over the whole thing and said she was "all done" and that was that.  So we'll go back soon and start with that test.  Here's a picture of a BAHA (which has to be worn as a band until she gets old enough to have the device implanted in her skull):


The band would totally mess up her whole bow thing she's got going on.  But, I guess if she hears better, we need to consider it.  So, we'll see what happens there.

After that appointment, we had speech therapy.  I've been wanting to tell you about that, but can't finish that post right now.  So check back soon for that post!  It's pretty exciting!

Thanks!
~Christy

Wednesday, June 22, 2011

Bummed

Yes.  I'm bummed.  Today's appointment did not go the way I wanted.  And we are not officially capping.

Her doc used a pressure gauge to see what her breathing looked like (how hard she had to work to inhale and exhale).  It was a piece of hard, clear plastic that attached to her trach and had a tube coming off the side of the plastic, which was attached to the actual gauge.  The hard, clear plastic part was a couple of inches long and one end attaches to the trach and the PMV went on the other end.  As she inhaled through the PMV, the gauge measured the pressure.  While wearing the PMV the pressures were GREAT!  Not that I was surprised, of course, because she wears it just fine (with no distress) for most of the day.

So, after that was measured, we took the PMV off and blocked the end so that she would have to breathe both in AND out through her mouth and nose.  And she didn't do so well with that one.

But, I have to wonder about the amount of dead air space in the clear plastic piece and tubing to the gauge.  In order for the air to exit her body - it has to fill up all the dead ends before it finds it's way out.  It's always going to follow the path of least resistance.  There was a lot of dead space with all that plastic.  If you just block the trach off at the entrance to the trach, there is VERY little dead space in the cannula itself (the part you can't see - that's in her trachea).  So ALL of her air goes out and in the same way.

I know this might not make sense.  But, just trust me that I believe I'm right.

One reason is that it just makes sense to me.  I might not be doing the best job of explaining it in writing, but it does.  Another reason might be that I have to hold on to a sliver of hope that we can still make progress - or that progress was made after her last jaw reconstruction.  So, I'm hoping that dead space is the reason why she didn't do well and if you take the dead space away, she'll do better.

The third reason why I think it makes a difference is because I actually have a cap in my possession (shhhh - don't tell anyone) and I've already put it on her, while monitoring her oxygen saturation levels and heart rate and she did GREAT!  No lie - no exaggeration.

The reason why I have a cap is because I had NO idea that getting a cap would be so hard and that we would have to go through so much.  I thought it would be just like the PMV, which was ordered, and delivered with instructions to start using it for 3 seconds at a time.  Yes, you read that right.  We started with 3 seconds!!!  And then slowly (very slowly) built up her tolerance over a lot (like years) of time.  After only breathing through a trach (which is less "work" for her) it is hard and weird to learn to breathe through your mouth and nose.  And it takes more work.  Which is why you have to get them used to it slowly.

I will not reveal how I acquired this cap - but trust me when I say that I honestly thought her ENT would be totally fine with me having one and trying it out on her.  And I had the cap in my possession before I heard from her ENT that he wanted to go through certain hoops before giving me the okay to start capping her.

I don't necessarily mean to not follow doctor's orders.  I mean, that certainly wasn't my intent.  However, sometimes you just have to follow your gut and take some chances.  It really started out so innocently.  Which is why I couldn't bear to tell her ENT that I already have one and have used it!!!

And I promise that the second I read his e-mail that it wasn't so simple (which was weeks ago) - I backed off and became a lot more cautious.  I think the risk with her is that she has other issues (heart and lung, to be exact) that breathing just a tad bit harder could have a negative chain reaction internally that could have horrible consequences.  And we have come WAY too far to make a mistake like that.

It's just frustrating when I have seen her breathe just fine (that I could tell - with a pulse ox, too) but she didn't do that well today.  I believe a lot of that is behavioral.  There were three docs in the room and there was foreign equipment involved (on her trach no less, which I'm sure she's protective about).

I'm sure I looked crazy to the docs.  Ugh!!!  And what a horrible spot!  I couldn't plead my case with evidence - because I couldn't admit that I had the evidence!!!  Crap!!!!

So, the plan is to do a sleep study this summer.  If she can tolerate the cap while sleeping - then we know she can tolerate it during the day.  She will be monitored and sleeping, so that will take her behavior completely out of the equation.  My only problem with this plan is that what if she can tolerate it during her waking hours, but not while sleeping?  Because that's what I believe will happen.  I think she might have to work a little harder for her air to get past the base of her tongue, so she won't be able to continue to work like that while sleeping.

Ugh.  I don't know.

The other thing I didn't get to blog about is something pretty cool that happened a while ago (this is my "fairly exciting" news that I mentioned in this post).  One night after Harlie fell asleep, we blocked her trach with the obturator (it's a plastic tube that goes in the trach that acts as a guide to help you make sure that you get the trach in correctly - but as soon as the trach is in place, you pull it out so the person can breathe).  The exciting thing is that she continued to breathe - without skipping a beat - with little to no difficulty.  We stood there and watched her for 4 minutes and her sats and heart rate stayed the same!  I was so excited!

But, I know that 4 minutes doesn't mean decannulation.  But it renewed my hope that we are making progress and that her last jaw reconstruction was beneficial in some way.

So, we'll just have to see how the sleep study goes.  Even if it doesn't go the way I want - it will give us some accurate data so that we know where we stand.  And if nothing else, will give us baseline measurements should we have to compare things down the road.

I'm going to test her a few times with the cap while she's sleeping to see what happens.  Part of me says that if she doesn't do well at home then why go to the hospital for a sleep study?

And then all of these thoughts and developments (if you can call them that) have lead us to start thinking about her next jaw surgery.  I'll have to explain more in another post.  But, know that we will be exploring all our options, which means looking at other surgeons (in other states), before we put her through a third jaw reconstruction.

When I think about all this I feel so incredibly overwhelmed.  Even after all the countless hours and effort we have put into getting her - and keeping her - healthy and functioning as normal as possible, we still have so, so far to go.  There are so many times I wonder how in the world I'm going to have the energy.  And how will this affect Murphy and Cooper?   Or our marriage?  Or more importantly, my ongoing desire to get a Pug puppy????


Seriously, with this life, can't a woman just have a freaking puppy????  Is that so much to ask?  Geez.

Okay, thanks for reading.  I really do have so much more to write.  It looks like I'm getting my blogging groove back a little.  So, check back soon!

Thanks!
~Christy

Tuesday, June 21, 2011

Headed to DC...

for an ENT appointment.

Hopefully, if things go the way I want them to, she will come home in official "capping" status.

I guess I shouldn't make it sound so progressive.  Capping (sealing off the trach, meaning that she will breathe both IN and OUT through her mouth and nose) usually is a precursor to decannulation (removal of the trach).  However, I do not believe that is the case here.

I'm thinking that she will need at least one more jaw surgery for that to happen.  And since we haven't even thought about it - it is quite a ways down the road.

However, that doesn't mean that we can't do everything in our power to get her to function as normally as possible.  And that is my ultimate goal.

So, he's going to cap her and see how she does.  I am hoping that she does as well as I believe she can.  And in the back of my mind, in the middle of my heart, I am secretly hoping that the results will pleasantly surprise us and mean she could be decanned even without another jaw surgery.

I suppose you never give up hope for that sort of thing.

So, I'll let you know how it goes.  Keep your fingers crossed!

Thanks!
~Christy

Monday, June 20, 2011

Lego Kids Fest!

This past weekend Tom and Murphy went to Pittsburgh to go to the Lego Kids Fest.  They had a blast.

They got to jump in a huge pile of legos.

And they could build whatever they wanted.



Build time!


Florida

In the process of building the United States.

Tom said this dinosaur head moved up and down.


Murphy standing in front of Heinz Field (home of the Steelers).

A maze.

An awesome fountain.
So, that's what they did for Father's Day.  They had so much fun and Tom said that Murphy couldn't have been any better.

One thing I don't get about Legos - why don't they make more "girl" lego sets?  Tom says because girls don't like Legos that much.  But, of course they don't when there aren't any girly Legos!!!  I think if they had them, girls would like them.  I love looking at Murphy's Legos.  And I'm a girl.  Girl Legos would be awesome.

Okay, that's it for now.  More later!
Thanks!
~Christy

It's that time of year again...

Marathon training has officially begun.  Well, like three weeks ago.  That's how behind I am in blogging.  I can't believe how busy my days have been - and things are only going to get worse!  We have a very busy summer scheduled.  But I am hopeful that our hard work this summer will pay off with major progress!!  Only time will tell.

So, back on June 4th - we officially started training for the Richmond Marathon (in November).

Me, Heather, Allison, Niki, and Lauren
Our group is missing a few girls from last year (Anna, Mary Curtis and Kat).  Kat is expecting a baby (congratulations to her!) and Anna and Mary Curtis couldn't be there that Saturday.  Plus, some of the girls are going to train with a different team (moving up to intermediate training vs. novice).  Some of us ran with the intermediate team this past Saturday and did 8 miles.  The intermediate team logs way more miles than novice, and I just can't squeeze anymore miles in.  So, I'm sticking with novice again this year.  Plus, running with the novice group allows for a lot more socializing, which is a MUST for me.  So, it will be an interesting training season with our group split up.

I must say that I am very happy to have the focus of training again.  It feels good.  I am going to try something different this year.  I am going to replace some running miles with strength training.  I'm hoping that will help keep me injury free this year.  We'll see how it works out...

Okay, that's it for this subject.  I think I might try to write another blog post.

Thanks!
~Christy

Thursday, June 16, 2011

Harlie's Last day of school

Today was Harlie's last day of preschool.  Well, she'll go to summer school for the month of July, and then preschool will officially be over.  Luckily I remembered that I had my camera in my bag when I went to pick them up from school this afternoon.  


Harlie's actual preschool class is only a half-day (the second half, 11am - 2pm).  She goes in at 9:30am to recieve her hearing impaired instruction.  Tomorrow is the last day of school for our county, and it is only a half-day.  Since Harlie's class was the second half, she won't go at all tomorrow, making today her last day.
 

Since Harlie's still recovering in her brace, I drive them to school and pick them up.  I just didn't want her jostled around on the bus.  And speaking of the bus, one of her bus drivers sent Harlie a card the other day, saying that the driver and the aide on the bus miss her.  How sweet!

Brandy and Harlie
After I uploaded those pictures, I went and looked for a picture from the first day of school.


HA!  She's wearing the same shirt!  What are the chances?   It's clearly one of my favorites.  And boy am I so glad I cut her hair!  I think the short cut looks so much better on her.

Brandy suctioning while waiting for the bus.
Notice there's just a few bags to carry around. 

Such a big bus for a little girl. 
Tomorrow is Murphy's last day.  And I must say, I'm not sorry to see first grade end.  It was a tough year for him.  I am very hopeful that second grade will be a better year.  

More later!
~Christy

Tuesday, June 14, 2011

The Pool

I started to blog about this on May 5th.  We were in the hospital with Harlie's infection and I must have been in a BAD mood.  Seriously bad.  So, I had to delete it and start over.

Here's the gist of what I was trying to say...

Summer is a hard time of year for us.  It's the time of the year when a lot of kids get decannulated (get the trach out) on the trach board.  People go on vacation.  People other than us, I mean.  Tom has to use his vacation for Harlie's surgeries (just another perk of having a medically complex child). And we haven't been in a position to take a vacation anyway.  Heck, she's had heart surgeries the past few summers!

I've always wanted to join a pool.  But I thought we would wait until Harlie was no longer trached.  I never realized that she would be almost five years old and would still be trached.  So, we just couldn't wait for that any longer.  We have to go on about our life and live it to the fullest when we can - despite the trach.  So, we joined the pool.  Hopefully, it will make us feel less awful about not taking a vacation.

And we signed Murphy up for the swim team.

Hello swim practice every day!  Okay, four days a week.  Until next week when it increases to five days per week.  Good-bye any hope of getting caught up on my duties at home.

I tried to keep Harlie away from the pool.  Let's face it, the pool is not the safest place when you have an open passageway to your lungs.  But she saw me taking Murphy every day.  She could see he was wearing a swimsuit.  And carrying a towel and goggles.  She's no dummy.

So she started to sign that she wanted to go swimming.  Tom tried to make her happy with a baby pool on the deck.  No luck.  She signed "go, car, swimming".  Huh.  I suppose that meant that she wanted to get in the car and go somewhere else to swim.

Well, I'm sorry.  She has to live her life, too!  And she needs to enjoy it when she can.  So I took her.


And she's a TON of work!!!  She wants to jump in and swim just like everyone else.  But, she can't.  It's that simple.  So, you have to be super careful with her.  No turning your back for a sec.  And then add Cooper to the mix and you've got yourself a recipe for disaster.  Thankfully two of my nieces go to the same pool - so they've been able to help me with the kids when I'm there.

This is what she wants to do...


But she wants her whole body in the water.  She's 35 pounds now - so keeping her head safely out of the water takes some work!

I've tried to streamline going to the pool every day with a bag that's always packed and ready to go, a bin for pool stuff - like towels and toys an empty bag, etc.  But it is still SO much work!  Both Harlie and Cooper need my full attention and help to be in the water.  And practice is in the afternoons until school is out so we get home right at dinnertime, which makes things a little hard to get everyone ready to eat dinner.

This past week was worse than usual because Brandy was out - she got married!  Congratulations to her and Joe!

So back to swim team... Murphy's first meet was Sunday.


A parent has to volunteer during the meet.  So Tom had to time the second half swimmers.  Which meant he was there till it ended (near 11pm!).  Luckily, our friend Donna's son is on the same team as Murphy - so Tom took Zach and Murphy and then Donna picked them up when they were done swimming.  Which was still late - 8pm.  And there was a rain delay, so that made it later than usual.

The boys playing games while waiting to swim.
Murphy's on the far left.  

Murphy's worried look.

Tom's dinner.  Not cooked by Tom, of course.  
Murphy is so non-competitive in nature.  He pretty much moves in slow motion.  So, when he heard the word "race" at the pool that day, he kind of panicked.  And when he was swimming he grabbed the lane divider, which disqualified him.  He still has a hard time making it the whole length of the pool without some assistance.  I know he CAN do it, he just lacks the confidence.  Hopefully that will develop over time.

Plus, next week when there isn't anymore school, practice is offered at two different times - one session in the morning and one in the afternoon.  So, hopefully there will be less kids at each session, meaning that they will get more time in the pool and more time with the coaches.

Luckily, (and I seriously mean that) he seems to really like it.  I am so surprised he doesn't think it's a lot of work.  Maybe he does.  But so far he seems to like the positives more than he dislikes the negatives.  Thank goodness!  I think they have fun cheering each other on and hanging out on the side of the pool waiting for their turn to swim.  Whatever works.  I just want him to be active in something and be happy about it.  And so far, that appears to be the case.  If he overcomes his fears and builds his confidence then we will be thrilled!

That's all I have time for now.  It only took me six weeks to write this.

Thanks!
~Christy

Monday, June 6, 2011

Kindergarten IEP

To finally update you on Kindergarten...

Harlie will start in September.  Unfortunately, she will change schools from where she is now.  I'm a little bummed.

Where she is now:

  • Is the smallest school in the county.
  • Holds the county's talented and gifted program.
  • The students are used to seeing hearing impaired and special education students.
  • The teachers are used to having sign language interpreters/instructional aides in their class.
  • Since the school is smaller, it is easier for Harlie to walk around.
  • The principal and the staff already know her and she knows them.

But they are starting a feeder pattern for special needs kids.  The county is trying to keep the kids that don't go to their home school (the one they would be zoned for if they didn't have special needs) together as they move up in schools, which is great.  But for some reason this means they have to make some changes and they decided to move the Hearing Impaired Program to a different school.

I'm sure it will be fine.  It's just more change.  And it's change that I thought I didn't have to deal with.  And it's a bigger school, with more students.  I can't help but think the more students the easier for the hearing impaired kids to be drowned out and lost.

It is closer to our home.  And I know a few moms of kids who go there.  So, I guess that's good.

Anyway, she will go full days - 7:50am to 2:00pm.  She will ride the bus and her nurse will go with her.

She'll be in a typical class and she will have her nurse, the teacher and an interpreter/instructional aide with her.  Crazy.  It feels so weird to think that she requires that much support.  She will also have 90 minutes during each day with a hearing impaired teacher.  And she will get some speech therapy, too.  Some of that time will be in the class and some out of the class.

You might be wondering why we are sending our four year old child with special needs to Kindergarten when it is so clearly the trend to hold kids back when their birthdays are even close to the cut-off.

The cut-off here is that they have to be five by September 30th.  And with her birthday being September 25th - she barely makes it.  Our thinking is that since she's been in a preschool class for the developmentally delayed - she has not had "normal" peer modeling.  All the kids in her class have their needs and wants met without having to communicate them.  And while there is some structure, each child in her class has a different capability level - so the structure is not as it is in a typical class.

The educators that have been working with her believe that she is capable of doing a lot more than she does.  And they feel she has the academic knowledge necessary to start this fall.

We've certainly discussed this at length.  And really it boils down to:

Do we send her to kindergarten despite her age and developmental delays?
or
Do we keep her in the preschool education for the developmentally delayed class for another year?

Here's what we were thinking:

1) We can always change our mind and pull her out if kindergarten turns out to be not the best decision.

2) We are doing this with the expectation for her to repeat kindergarten, so her age isn't really that much of an issue.  Even though she might be academically ready (knows how to count, knows the alphabet, knows her colors and can write her own name, etc.) there is a lot she doesn't know - socially.  She has a lot to learn and going through it twice sounds like the best option.

3) Staying where she is now, is definitely, without a doubt, NOT the best decision.  She's learned all she can in that class.  And she is ready to learn more.

4) I really like, and trust, her teachers.  They really care about her and work very hard to bring out the best of her during school.  And they believe that this is the best way to go.  And Tom and I think it's worth trying, at least.  Let's see what she can do when the bar is raised.  I can tell you that I've learned that parents underestimate their children's abilities a lot more than they realize.  I don't want to do that to Harlie.  She's already amazed us in so many ways.  Let's see what she can do.

My major concern with starting her in a typical class is how her classmates are going to view her.  Will she notice that they are staring at her?  Will she start to wonder why?  And then will she start to view herself the way they do?  Because I do NOT want that to happen any sooner than possible.  That is one thing I would delay forever if I could.  She still smiles at herself in the mirror and doesn't seem to be aware at all of her differences.

So, her hearing impaired teacher had a great idea of putting together a Harlie book.  It will be a book introducing her, and explaining in simple terms why she has a trach, why she doesn't talk, why her eye is the way it is, why she has just one ear, what her suction machine is for, etc.  The book will have photos and will be very kid (and parent) friendly.  We're thinking if the kids understand more of what's going on with her they will be more comfortable accepting her for who she is.

We originally thought of just introducing her to the class and explaining things, turning on the suction machine, etc.  But, then they might go home and try to talk about her and their parents would have no idea what they are talking about.  So, this way, we can educate both the kids and the parents.  And hopefully, the parents will be good about setting a good example for their kids.

We also decided to put her in summer school with the county.  She will have the same teacher she has now, which is great.  Summer school for her current class is held at a different school.  And it is just more than a mile away (still not our home school).  This is awesome because I was not going to put her on the bus this summer.  For one, it is way too hot - especially with her back brace.  And two, I don't want her getting all jostled around on the bus.  I don't think that would be good for her back.  So we are super lucky that her class will be so close!

So, that's about it for kindergarten.  I am going to her school this week to meet the principal and register her.  I think that she is going to show me around some.

Exciting stuff.  Big changes.  Big challenges.  And hopefully, Big Successes are ahead.

There's so much more to tell you.  But this has gotten long enough.   I will post more as soon as I can.

Thanks so much for reading!
~Christy

Thursday, June 2, 2011

Karin

I was hoping to be able to get some updates posted.  But tonight I heard of a fellow trach mom's passing.  And I'm a little thrown off balance.

She just gave birth to her second child yesterday.  And less than 12 hours later she suffered an amniotic fluid embolism and was not expected to live more than a few hours.  Since I haven't heard that she officially passed away - I find part of me wanting to believe that somehow she pulled through.  But with that event, I don't think that's a possibility.

I'm still in shock.  A birth carries so much hope for the future.  It just feels so wrong to have this happen.  Sadly enough, I'm used to hearing about babies/children passing away.  And trust me when I say I've thought about that - and fear it - from a personal standpoint more than a mother should.  But a Mama passing away?  Right after giving birth?  I don't know.  It just seems that a parent is better apt to deal with the pain of losing a child than a child losing their parent at such a young age.  I suppose both situations suck beyond belief.  No need to compare.  It's just not what I'm used to.

So heartbreaking.

I met Karin a few years ago.  Well, I guess I "met" her years before that on our trach support board.  Her son was trached for a few years.  And her son and Harlie have the same ENT in DC.  They live in Northern Virginia.  One day when Harlie was having surgery, I met her and her husband in the surgical waiting room.  Her son was having a bronch, and was decannulated by then if memory serves.  Her son will be turning four this month.

So heartbreaking.  Just can't get over it.

So, that's why I can't post an update tonight.  I do have so much to tell you.  I promise it's coming soon.

Please keep Karin's family in your prayers.  I just heard that she passed away at 8:33pm.  And I just can't stop thinking of her almost four year old who must be so confused right now.

Thank you,
~Christy

Wednesday, June 1, 2011

Desperate times call for Superheros.

These kids sure keep me busy.  If only I had a superhero to help me...


Maybe one who isn't so confused as to his own identity.


Superman pajamas, Batman cape and mask, Hulk hands, and Dinosaur feet.  I suppose he has it all covered.  I love a boy's idea of dress up.  I meant to get a picture of Murphy, too.  They looked so cute together! But whatever he put on Cooper wanted.  Which is how Cooper ended up like this and Murphy was basically, naked.  Well, he had his pjs on.  He's such a good big brother.

I promise I will get you all updated on what's going on here.  Soon.  Murphy now has swim team practice everyday, Harlie returned to school yesterday, and Cooper had his last day of preschool last week.  Boo Hoo!!!!!!  Seriously, what do people expect me to do with that guy every day???  Yesterday he opened that #$% pillow with the little white beads and spread them all over the upstairs (last time he kept them contained in his room).  He even was thoughtful enough to dump some in the clean laundry basket.  That'll teach me to not put them away immediately.  I'll be finding beads for years.

Okay, gotta go!
~Christy