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

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

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

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

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

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