Murphy and swimming

We signed Murphy up for year round swimming this fall.  He had a brief stint with gymnastics once a few years ago.  And, of course, he's been on the summer swim team with our pool for the past few years.  But, I think other than that, this is our first real commitment to an extra curricular activity.  And I have to tell you, it's not easy.

When it comes to being the parent of a child with special needs, I got it.  It's been eight years now, and I feel like I have a good handle on it.  But, this carting around kids after school and getting to practice on time, like every time, weeks and months on end?  And volunteering (aka making commitments in which other people are relying on me)?  I'm not so sure about all that.  Walking into NOVA for practice, I feel like a fish out of water.

Plus, that's not my community.  Those aren't my people.  They don't know me, us, or Harlie or what we have on our plates.  I feel like I'm exposing myself.  And it's really scary.  But we are going to try this for a year, and see how it goes.  I know we'll meet more people and Murphy will make some friends.  It's just going to take a little time.  Luckily, I do know a few people so that's good.

So, every Tuesday and Thursday, I put Harlie in the car and drive to school to pick up the boys from the car pool line.  Murphy is in the 5th grade, and this is the first time I have ever used the car pool.  We are walkers.  Rain or shine. Every day.  Well, except Tuesday and Thursday afternoons now.  Dismissal for car riders is at 2:10 and practice starts at 2:30.  It takes about 15 minutes to get there.  So, by the time he actually gets in the car and changes into his swim suit, he's a few minutes late.  But, they said they are fine with that for the 2:30 class, since they know it's a tight fit.  I tried the 3:30 class the first week, and it is very crowded.  Considering this is his first year, I thought he would get more attention and time in the water with a smaller class.

He is the tallest kid in his class (granted, it's a small class).  But, after just a few days, Murphy came home and said that everyone was asking him why he's not with his age group.  He is in a novice intro group vs. an age group.  I feel so bad that it took us so long to be able to introduce him to something.  But, it really was the best we could do.  I know I could not have handled this kind of schedule last year or any year prior to that!  So, I explained that to him and told him that it's up to him as to how fast he can move up to his age group.  He has to earn it.  Hopefully it will be a good experience for him.  

Anyway, he had his first swim meet October 11th and 12th.  He had two events on Saturday (50 Free and 50 Breast) and one event on Sunday (50 Back).

On Saturday, I had to run twenty miles for my marathon training.  His session was in the afternoon, so Tom let me rest at home while he took him to warm ups.  Warm ups were at 1:30 and he was scheduled to swim a few hours later.  So, I just showed up in time for the events.  He did great, I think. He wasn't scared, and he didn't DQ, so I considered that a success.  And he already looks so much better in the water than he did this summer.

On Sunday, Harlie's nurse had to leave before Murphy's swim meet would've been over.  So, Tom stayed home and I took Murphy to the meet.  Warm ups were at 1:30 and he was scheduled to swim around 4:20.  I took two chairs for us and he brought a book.  We found a spot and I put my feet up in Murphy's chair to relax while we waited.  It's pretty warm/hot in the building and I was sitting down, relaxing.  And I fell asleep!  In public!  And I'm not even a napper!  Please remember that I ran twenty miles the day before!  I was SO tired.  And we had all those appointments that week for Harlie's tooth.  Plus, the We Haunt Harlie event.  It had been such a busy week.

Anyway, the next thing I know Murphy says, "Oh, 134? That's my event!"  Oh no.  Murphy was in the first heat!  There was no way he was going to make it if they were announcing the event already!  I told him to run (through a crowded building) but he did not make it.  There was no way.  Ugh.  I wanted to cry. I went over to that area, and he didn't return.  I saw his coach doing a lot of talking with a few people.  It looked like they were talking about him.  So, I was crossing my fingers that they could work him into another heat.  When she appeared to be alone for a sec, I went over to her and told her that I was Murphy's mom and that I was really sorry that he missed his event.  She was very kind and understanding and said it happens.  She said they were looking for a place to put him, but all the heats were full.  I stood by the pool and waited while the meet continued, praying that they would work this out for him. To think we sat there for three hours - for nothing?!  Ugh!  And I knew Tom was never going to let me live this down. I am so irresponsible when it comes to time. I just can't seem to get it together! I felt absolutely horrible. And to make things worse - I didn't take one single photo of him at his first meet.  After several events, she came over and told me he would be in the first lane, in the next event.  Oh, thank you so, so much!  What a relief!

So, the announcer said, "Event number so and so, 50 Breaststroke, and Lane 1 will be swimming 50 Backstroke."  :-)

I must say, I was way more upset and worried about it than Murphy.  He didn't seem to be at all bothered by it.  He didn't even care that he was swimming a completely different stroke than everyone else.  I'm not sure if that's a good thing or not.  One could speculate that he just doesn't care, period.  But, I'm hoping that he's just a "go with the flow" kind of kid.

He had another meet this past weekend.  This time he was swimming during the morning session.  I had to run my last twenty-mile run (before the marathon) on Saturday.  So, I missed it.  Apparently, it wasn't a good session.  He flip turned too early in one event and his goggles fell off in another.  Tom took him again on Sunday, since they had to leave so early. I guess he didn't want to repeat what happened the last time I was in charge. :-)  He swam his first 100 meter event, and it was 100 Breast.  There were only three boys in the heat, but Murphy came in first.  So, that's exciting!

And, thankfully, my twenty-mile run went really well.  Despite the fact that I was LATE getting to the start.  I know, that's shocking, isn't it?

I left early Saturday morning and thankfully was talking to my friend Niki on my way.  She's clearly a really good friend because it was before 7am at the time!  Anyway, she said something that made me realize I left my Garmin at home!  ACK!  Seriously, I cannot thank Niki enough for this!  Luckily, I was right at an exit when I realized it, so I was able to take the quickest route back home.  Grabbed my watch and hurried to try to make it.  Since I am doing Galloway (run/walk combo), I need my Garmin to beep to tell me when it's time to walk/run.  That day I was running for five minutes, walking for one.

Anyway, the group was starting in waves according to one's predicted marathon times. I was going to start at 7:20 or 7:23.  Either wave would have been fine.  I pulled into the parking lot at 7:27.  There was one group left.  I hurried to my team's meeting area to sign in (we sign in so they know everyone who started, finished).  And that last group left.

I was literally the LAST person to leave the parking lot. Sometimes, I don't know how I survive.

Anyway, I had to work hard to keep my running under control for the first few miles.  I didn't want to run faster because I felt rushed.  I wanted to keep to my plan.  Which, I did.  And I am really proud of myself.  I ended up catching up to my team!  I couldn't believe it.  And, as a bonus, I ran it seven minutes faster than my last twenty! I have had some great runs lately.  So, after that last twenty, I feel really confident.  And now we are officially in taper mode.  Yay!  So, my next long runs are twelve, eight and then the marathon - 26.2!

As difficult as the past few months have been, I can now say that I am truly excited about this marathon.  I know that sounds weird.  But, I'm almost there.  It's almost over.  And, I'm ready.  And it feels really good to know that I'm ready to run 26.2 miles.

I wrote all the above on Monday night.  Is now Thursday and I am finally getting around to finishing it.  Since Monday night, I have come down with some illness.  I am super tired, and coughing a lot.  My lungs hurt.  Awesome.  So, I am not running for a few days, hoping that some extra rest will kick this thing out.

We got Harlie's new wheelchair yesterday.  She just loves it.  But, I will save that post for tomorrow.  I'm going to finish up this one for now.

Thanks for reading!
~Christy xo

Incident at the Pool

Just a quick one to tell you about what happened at the pool today...

Tom and I took the kids and met my niece Maggie at the pool this afternoon.  The kids were taking a break from being in the water and were playing around our chairs.  They'd been out for more than a few minutes, and were completely dry.  Maggie and I were chatting while they were playing with water guns.  At one point I saw a kid (I don't know... about six to eight years old?) griping at Cooper about the water gun.  I assumed that Cooper must have squirted him or something. It appeared that the kid was walking past our area.  I watched him say something to Cooper and he walked away.  I didn't think much of it, to be honest.  Cooper's three, after all, and we are at a pool.  

The next thing I knew Cooper was standing at our chairs soaking wet and crying.  It took a second to realize that he was dry just a second ago.  And then Murphy said someone pushed him in the pool.  I was very confused - we were sitting RIGHT there.  Just a few feet from him a second ago.  As I was trying to figure out what happened, I could see a couple in the water/sitting on the side of the pool right in front of us.  It looked like they were aware of what was going on.  

I don't remember what I said to them, but the gentleman told me that someone pushed Cooper in the water (it was five feet deep where we were and Cooper cannot swim, nor is he five feet tall) and that he got him out of the water for me.  

WHAT?!?!?!

Cooper had been filling up the gun at the side of the pool, so I asked if someone accidently bumped him in the water.  He said, "I don't think so."  I, of course, told him "thank you" several times.  As if there is ever enough thanks you can give to someone for fishing your son out of the water and out of harm's way.  

As I talked to him more, he told me that this kid pushed Cooper into the water where there were several boys playing.  Everyone in the pool around that area could see that Cooper was struggling and one of the boys grabbed him and then handed him to this gentleman who put him back on the ground.  

Obviously Cooper is fine (thanks to those that saw him in the water) - but when I think about it, it makes my stomach hurt.  It doesn't help that I was talking to Maggie - and that I never saw it happen.  

Clearly, my first thought is that the person who pushed him in was that kid that was griping at him just a few minutes earlier.  So, I asked the gentleman if this particular kid was the one.  There were two kids in the same shirt.  I went and told a lifeguard.  

That sounds so ridiculous.  I told on him.  But, there is no way that is acceptable behavior.  You can't just go pushing a little kid into deep water!!!  What the hell???  And I really didn't think that I would handle it appropriately (a conversation with the kid, myself, I mean).  The lifeguard went and spoke to one of the boys, but it wasn't him.  Then we saw the other kid and I knew that was the kid that spoke to Cooper.  So, she went and talked to him.  

She returned and said that he admitted to pushing Cooper in the water.  But he said that he thought he could swim since he was standing by the pool.  Whatever.  And then she said that he has Autism and that she wasn't really getting anywhere with her conversation with him.  She said she was going to talk to his parents (but he was there for a party, and they weren't there).  But she knows who they are.  

I get that we can't control everything our children do - with or without special circumstances.  But, wow, is that dangerous!  Thank God for the guys that saw Cooper and rescued him!  Later on that kid walked by our area again and Cooper yelled at him!  Cooper wasn't with me when I was talking to the lifeguard or anyone else about it.  So, it's not like he heard us say it was that kid.  He knew.  Cooper pointed at him and yelled, "Hey, you pushed me in the water!"  The kid turned looked at him and then hurried off.  

It still makes me sick to think about it.  

And I couldn't help but think, what if he pushed Harlie in the water???  That could be tragic.  No joke. No exaggeration.  The trach is an open passageway to her lungs - with no protection from water.  Water would fill her lungs instantly.  And now I feel even more sick.  

I know that some would say she just shouldn't be around water.  Period.  But, she loves it!  How can I keep her from experiencing that joy?  Especially considering all she's been through?  She deserves some fun, too!  And she is aware that she cannot go in the water freely.  If she didn't know, and wanted to jump in, it would be a whole different ball game.  

But I can tell you that I would NEVER, EVER, send her to the pool for a party without someone looking after her every move.  I've already said that I cannot take the three kids to the pool by myself.  I just don't feel comfortable taking two non-swimmers, and one who needs constant, close supervision, alone.  I do believe that's just simply too dangerous.  

I actually tried it for Murphy's swim team practice this week.  Usually, I take them, but I don't let them in the water and they have to stand by me the whole time Murphy is swimming.  This time I let them get in the shallow end.  But, even that was stupid.  Especially considering I didn't wear my swimsuit that night.  BIG mistake.  Other moms around me had to help me keep an eye on them, and I'm just not comfortable with that.  

So, back to what I was saying earlier... I get that we cannot control everything our children do (I am really at Harlie's mercy, so I know this to be true and try not to judge others).  However, I can't help but wonder how many times this has happened before?  Certainly Cooper didn't make him so mad that this was the first time he'd pushed a kid in the water.  While I couldn't hear what the kid said to Cooper, I could clearly see that Cooper didn't say anything to him.  And even if Cooper did speak to him, it would have been his three-year old speak - and nothing to cause that kind of anger.  

I don't know.  I guess I'm struggling with how I'm going to protect Harlie and Cooper from someone pushing them in the water.  It adds another challenge and burden to the pool.  I worried about them losing their balance and falling in, but I certainly didn't worry about them being pushed in by a complete stranger!  

Thank God he's okay.  It will be years and years before I can relax at the pool, huh?

Thanks!

~Christy

No more swim practice!

Wow.  It has been a long time since I blogged!  Now I have WAY too much to catch up on.

The past two weeks have been brutally busy.  Harlie's been going to summer school four days a week, and she's had therapy sessions FIVE days a week!  For two weeks!  I think I might be more tired than she is!  Well, I have been running (training for the marathon) so I'm sure that has something to do with my current exhaustion.  And tomorrow morning we will run nine miles.  In this current heat wave.  Good times!

I have to be quick - but thought I would share a funny thing from Murphy's LAST swim meet on Monday night.  They had a different theme for each meet.  And they encourage people to dress up in costume.  We didn't pay any attention to this for the first five meets.  But for the last one, Murphy said he wanted to dress up.  Sure.  Whatever.  Just get in the car, already.

Since I'm so terrible at reading my e-mails (that's really because I have had NO time to be on the computer) I didn't see that the theme was Athlete or Mathlete.

And Murphy dressed up as a....

Pirate.

(insert soundtrack of me laughing hysterically here)

Seriously.  I couldn't stop laughing.  Everyone else was dressed as an athlete or a geek.  And Murphy was a pirate.  Ahhh, you gotta love that he's his own person.  And I don't think he noticed that he didn't quite fit in.  Even when they had this "parade" around the pool.  I wasn't quick enough with my camera for that one.  It's a shame too, because it was HYSTERICAL!

Anyway,  I'm glad that swim team is over for now.  One less thing.  To be replaced with something else.

And since Murphy will probably never read this, I'm going to show you some pictures of him "diving" in for his 25m Freestyle.

Looking good so far.

Mmmm, not really looking like a dive.

Nope.  Definitely not a dive.

At least we are very clear about the areas he needs to work on.

Regardless, he finishes with a smile! Love that!

That night they had a parent/coach relay race.  So, Tom swam in that.  It was really fun.  They had three 4-person parent teams from each swim team and one 4-person coach team from each swim team.  Unfortunately, the other team didn't want to swim 50m, so it was confusing to watch.  If they had done a 50m relay, all swimmers would start and finish at the same end of the pool.  So, we could have stood on the opposite side and watched all the swimmers.  But since it was a 25m relay, swimmers had to be on both sides of the pool.  This made it impossible to watch or to see who won.  But, they all had fun anyway.

The two swimmers of the evening.

Boys having fun!

All in all, I feel that swim team was successful.  He worked through his fears, never complained about going (even when he was terrified!), stopped touching the rope, was part of a team, and had a great time.    

More later!

Thanks,
Christy

Murphy's 4th Swim Meet...

... was a success!!!  

We are SO proud of him!  And relieved.  But more proud.  And he even swam in two events - the 25m Freestyle and 25m Backstroke.  Woohoo!!!  

This morning at swim practice he touched that stupid rope.  Like several times.  So, after his practice was over, I made him swim one more lap and told him he couldn't stop swimming until he made it across without touching anything.  He did it just fine the first time.  I just wanted him to end his last practice before the meet in a positive way.  

I forgot that Tom was timing the first half of the meet, which left me with the kids by myself.  It was fine.  I packed lots of toys for them.  The only real problem was that it was so stinking HOT and there was no shade.  Once the sun went down over the rooftop, it was much, much better.  

Tom timing.

Murphy getting a pep talk from the coach before 25m Freestyle.

Murphy swimming.

He didn't touch the rope!!!  He came in last in his heat, but he didn't touch the rope!!!  We were cheering for him and it was so great!!!   My friend Niki came up to cheer him on, too and took this picture of us...

Murphy and me right after the 25m Freestyle.

Thanks, Niki!

Zach and Murphy.

Our camp.  It was SO crowded.

25m Backstroke.  No touches!!!  YAY!

 He was thrilled with himself.  And he had so much fun tonight playing with his teammates.  During the last meet he sat with us, in a crummy mood (you know, arms crossed, head down, frown-y face?).  Tonight was the complete opposite.

Our goals for him on swim team were for him to have fun, feel a part of something bigger than himself, and to gain some self-confidence.  All were achieved tonight.  There are two more swim meets this season.  I'm anxious to see how things go the next few weeks.

On another note - Harlie started summer school this morning.  It was a rough morning around here.  She was very confused on why we were rushing her through her normal slow wake-up process.  This fall is going to be interesting...

More soon!

Thanks!
~Christy

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

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

Murphy's Swimming Lessons - Video

Back in July we signed Murphy up for swimming lessons with the Morgan Swim School. Last summer he had his first lessons ever with them. And somehow, he got the same instructor again this summer. We were very pleased. Murphy really liked her and I think she's great (Camille). Last year he had to overcome a lot of fear, which took a while. This year, he walked right in, saw Camille, and got right in the water with no hesitation. It was great!

Well, he now loves swimming! He told me the other day that it is his most favorite thing to do. Tom was a swimmer as a kid (I was not) so maybe he'll take after him. He ended up loving it so much that we signed him up for another session. And you wouldn't believe this, but we got Camille again! I don't know if they did that on purpose or if it was just a major coincidence, but either way, we were thrilled.

The Morgan Swim School also specializes in kids with special needs, so I am really hoping that one of these summers I can video Harlie in the pool.

Anyway, here's a video I put together of him learning how to swim. We are so darn proud of him. And we are so happy that he loved it and now loves to swim. Thank you Camille and Morgan Swim School!

Quick Updates

Wow! Where has the week gone?

My Dad is doing well, considering. I feel so bad for him because he has not been able to eat anything AT ALL since early in the day on Sunday! The only thing they will let him have is ice chips. Yum! Poor guy. Hopefully soon things will start to wake up and start moving for him so he can eat again. They removed about 14 inches from his colon, so I guess you can't go rushing things around.

The biopsy results came back and the tumor was malignant. But it was just entering stage two, it was in the wall of the colon just a little, and it had not invaded any lymph nodes. So all that is good. The hospital has a cancer committee composed of all the different specialties that get involved and they will review his case and present their recommendation/options. That will happen in about two weeks I think.

Murphy has been taking swimming lessons all week (and it will continue next week). I am so happy to say that he is LOVING it! When we went to the pool on July 3rd he did not want to get in the big pool. And when he did, he only hung out on the steps. But, he is a completely different child now! He even told his instructor today that he wanted to jump in the deep end of the pool! I am so proud of him! I'll have pictures from our fun day on Wednesday soon.

Harlie had speech therapy on Tuesday. She put on her PMV (speaking valve) and wore it for about 6-9 minutes or so. Her therapist ended up being the one to take it off because Harlie was breathing very hard while wearing it. The struggle to get her to tolerate the PMV is growing tiresome. Sometimes I can feel myself wearing down on some of the battles. I have to redirect our efforts and change things up a little. Right now we're focusing on potty training.

We had another follow up appointment from her heart surgery. This time it was with her local cardiologist here in Richmond. They did another Echo (ultrasound of her heart). For the most part, things looked good. The only glitch is that he saw some leakage/regurgitation that he has not seen before. Basically, as her heart pumps the blood out to her body, some of the blood comes back in. He said a little bit is okay. So, we will go back for another Echo in a month. Hopefully this will not become a problem. We didn't talk about what it means if it gets worse. He didn't seem overly worried, so I'm not - yet.

Well, that's it for tonight.
~Christy

Busy Monday

Harlie had feeding therapy today for the first time since the end of May. And we got our original occupational therapist back! YAY! Allison started with us when Harlie was just a few months old. Last summer she went to work in the clinic at Children's here in Richmond. And it finally worked out that she had a slot open for Harlie.

Overall, Harlie did really well during therapy today. Allison said that she was excited about what she saw today. And she gave me some pointers on how I should manage Harlie's behavioral issues during therapy at home. Normally we weigh the food, the drink and her bib - before and after feeding therapy. That way we can see how much she's actually swallowing. Today she ate 9 grams (which is less than a half an ounce). I think some of my problem is that I wanted her to eat something measurable. And when she did, I wanted her to eat more the next time. I felt so much pressure to start to see her volume increase. But Allison said that if we work on her skills to eat that the volume will come naturally. So, I'm not going to weigh everything for a week, and then I'll start to spot weigh - to take some of the pressure off. I am sure that in some way Harlie could feel the pressure from me. So, hopefully that will help me relax a bit, which hopefully will mean better feeding sessions.

Murphy started swimming lessons today. He's already told me numerous times that he doesn't want to go back. We told him it's important that he knows how to swim. To which he replied, "But I already know how to swim"! Nice try.

You might remember that he had a week of sports camp at the YMCA a couple of weeks ago. He was not a fan. And barely participated. Well, last week, every time we went to the gym (for me to work out and for him and Cooper to play) he would sing from the backseat, "YAY, no more sports camp"!!!

And then when we left the gym this morning to go to swim lessons I asked him if he had fun playing. He told me that there was a boy playing with a blue car and he wanted to play with it, too. He said that the teacher made the boy share the toy with Murphy. Then he told me "but sharing was not my idea. I wanted him to give it to me". Nice. Ugh - sharing. That has got to be one of the hardest concepts for a kid to learn.

On to my Dad... a couple of weeks ago he went to his doctor and told him that he had no energy and that he was getting concerned that he wasn't gaining his weight back. So, they ran some tests and did a colonoscopy. They found a tumor and scheduled surgery - which was today. He did very well. They removed the tumor and will biopsy it. We should know the results Wednesday or Thursday.

There was some concern about his gall bladder, but during the surgery, the surgeon decided to leave it alone. My Mom said he already walked around a bit today, which is great. He just can't eat anything for a while, and then will only be able to eat liquids. Then I think on Thursday he can start to eat solids again. Crazy! He said he was starving when I talked to him tonight. He sounded great, though. So, hopefully this will give him his energy and appetite back. I think they were thinking he would be in the hospital until Saturday.

Well, that's it for tonight. Please keep your fingers crossed that the results of the biopsy will be good.

Thanks,
Christy

Last summer memories...

One week from today and Harlie's wires will be OUT!!! WooHoo!!! I am SO excited! It is hard to believe that 8 weeks have already gone by. And it really wasn't that bad. Just the first couple of weeks and then we all seemed fine. Harlie recovered faster than us, that's for sure.

Murphy's swimming lessons are going great! It was a rough beginning, but I think he finally realized that he CAN do this. Today was his 6th day and he swam with his head under water from one side to the middle of the pool, turned over and got some air, and then turned back underwater and swam the rest of the way to the other side. I was so amazed. And the instructor threw a toy in the pool and he had to swim to the bottom (in shallow water) and grab it and bring it to the surface. I cannot believe how fast he has progressed! I took some video today and will take some the next two days, and then I'll post it so you can see. It is very hard to believe how long he can hold his breath. I certainly did not expect that. He said he is so proud of himself! I love it!

Tonight he asked me with some impatience, "when is the baby coming out already?" It is hard to believe that I still have 9 weeks left. As I've been told many times (by both strangers and loved ones) I am quite large. Paige (my favorite photographer) came last night to take some photos of the kids and my belly. I am excited to see how they turned out. Hopefully I'll be able to post some on here for you. You should check out her site, http://www.picturepaiges.com/ when you get a chance. I just love that I can insert links into my entries now!

So, lately, I've been thinking a lot about how far we've come with Harlie. At this time one year ago, there were so many times I was seriously afraid she wouldn't make it. She was working so hard to breathe with her respirations often over 100 - even at rest! That's taking 100 breaths in one minute, which is a lot! We visited the ER many times, and we all (the docs included) realized that there was nothing anyone could do except to remove her bad lung lobes (the upper and lower right lobes). I remember one day when I was scared and I realized that - for us - calling 911, would not help. I remember thinking how lonely that felt. What a crazy realization! So many times I wondered how I was going to get through the day feeling so scared.

And now, a year later, things are SO much better! Here are some pics from this time last year. Here's Traci, her physical therapist, showing us that she's not helping Harlie sit up. She lasted a few seconds before falling over. By her first birthday (September 25th) she was sitting up completely on her own. Oh, these pics were taken on July 20, 2007. She was still on oxygen 24/7 then. And she weighed 14 pounds. She weighs 22 pounds now.

And here's a short video of her in the hospital after her 2nd heart surgery. Granted, this was in April, but it does show you what it looks like to see her breathe really fast. And it only got worse until August 14th - the day of her lung surgery. What a turning point that was for her!!! There's been no stopping her since! And how cool is it that I can do this (insert a video into my blog, I mean)?

Well, that's it for tonight. I really must get some sleep. Oh, and thanks for the supportive comments about my blog! So far, it looks like most of you like it. Kristie, that is a real bummer that you can't view it at work. I'll probably do some dual posting for a little while. But these comments about the photos and/or videos won't make much sense in Babysites. Oh, and I uploaded some more pics under the vacation album. There's still more to upload, but there's only so much time in a day...

Take care,

Christy