Friday, June 6, 2014

The last month...

I know.  I've been absent again.  I have just not been "myself" lately, and it's hard to want to blog when you don't feel like yourself.

I have so much good to say about the We Heart Harlie and Friends event and the Deep Run Marathon Dance, but I am seriously lacking the energy to pull myself out of this funk for that right now.  Soon, I hope.

The real reason I'm writing right now is because I ran into two friends today who asked what's been going on.  And they both said that they want to know, even if it's not good.  So, thanks for that Katie and Stacy, this is for you!

The last two weeks have been an adjustment around here.  Cooper had swimming lessons each day and Murphy's swim team practice started.  Thank goodness my dear friend Bethany and I signed our boys up for the same sessions.  We took turns driving them there, which was a life saver.  The first week of adding those appointments on my calendar were complicated by Harlie having a.... fever!  Yes, the girl who never  rarely has a fever, had one.   So, that was a little freaky.  After seeing some hellacious infections not give her a fever, it makes you wonder what's brewing that does give her one!  We waited it out and didn't even take her to the doctor.  She's fine now.

Anyway, her being sick meant I couldn't take her to the pool for Murphy's swim practice.  Our nurse leaves earlier in the afternoon, so I don't have coverage then.  So, I called my Mom.  She received her first round of chemo last month, and was feeling better and up to coming over.  I had just seen her the night before at my nephew's senior soccer game.  But, she was wearing a hat, so I didn't notice.  I knew she was going to lose her hair, I just didn't realize it would happen so fast.  So, I guess that sort of caught me off guard.  Makes everything more real, I guess.  We had not told Murphy anything yet.  And when he saw her he said, "Nana, did you get a haircut?"  Ugh.  So, when Tom got home we told him that Nana is going through chemo for cancer.  Odds are that she'll be okay.  The cancer got into some lymph nodes, so the chemo will hopefully catch any that sneaked by.  She is in great spirits for the most part.  I know where I got my positive outlook from.
 

Here is my Mom and I on May 10th.  Her and my Dad came over for dinner to celebrate her birthday (the 9th), Mother's Day (the 11th) and Murphy's birthday (the 11th).  This was taken before she started to lose her hair.

Whew, I feel like this story is just getting longer and longer...  I guess that's what happens when you don't write for so long.

Anyway, thankfully my Mom helped me out that first week of practice so I could take Murphy to the pool and leave Harlie here with her.

The next week my Mom received her second round of chemo, so she really wasn't feeling well then.  I think she's starting to bounce back some now.

Harlie got better, too.  I don't know what she had, but it went away.  Although the next week brought another ailment her way.  For some reason (still unknown) she started coughing up blood from her trach.  This started right as Memorial Day weekend got underway, so no doc to take her to except the ER.  She really seemed fine.  So, I let it go.  After a few days it started to get better and each day we saw less and less blood.  She seems all good now.

But when we went to refill one of her breathing treatment meds, we found out that Medicaid no longer covers one of her meds.  In looking to replace it with something that they do cover, her docs put her on Albuterol.  Since that raises the heart rate, they wanted me to monitor her heart rate during treatment to make sure she was okay.  This made us realize that her heart rate is a lot slower than I thought.  I always remember it being in the high 80s.  Well during the treatment it stayed at 60 (or just above) the whole time.  Harlie's pacemaker is set to keep her above 50 beats per minute at night while she sleeps and 60 beats per minute during the day when she's awake.  I suppose this means that her heart rate is now slower than 60 bpm, which is causing her pacemaker to fire.  Apparently more often than I realized.  She will get her pacemaker checked at the end of June.  So, I'll have more data then.  And even though this may be "normal" for her heart, it still makes mine hurt a little.  I know she has a pacemaker for this reason exactly.  I just don't like the idea that her heart needs more help than it was getting.  Especially since this feels like a new change.  And she's seven.  Just more reminders....

Anyway, here's the last month in pictures...

May 11 - Mother's Day

I started the day out with a great run with friends.


And when we got back some of the dads had set up some goodies - mimosas!

Thanks Glen!
And food!

Thanks to all who supplied the yummy food!
Then I went home and got the family and we went to lunch.  Not only was it Mother's Day, it was this guy's 10th birthday!

Me and Murphy
Hard to believe he's TEN!!!  Here's what he looked like ten years ago...

5 weeks early, 5 pounds, 10 ounces
He was such a little sweetie.  Still is, for the most part.
After lunch we went to Belle Isle.  I love going there because we can take Rooney.  It has become our Mother's Day tradition.

Yes, sometimes Rooney likes to take advantage of the stroller.

Murphy - TEN years old!




One of my favorite family pics!
The next week, some kids I know really wanted their toe nails painted...



So, I painted them.  No crummy comments (or thoughts), please.  Later in the week when the polish was wearing off, I took Cooper's off with some polish remover.  Cooper looked at me in amazement and said, "Is that how you erase it?"  He's so funny.

Pediatric Connection is the company that provides our nursing and medical supplies and equipment for Harlie.  They wanted to get some pictures of some of their clients, so we went there for a quick photo shoot.  She was a ham.


Have you ever seen the movie Milo and Otis?  If you have, then you will probably understand why I thought it was hysterical when I walked in the room and found the two of them hanging out with this stuffed sea turtle.




What are the odds?

The other day this adorable neighbor said, "Here's your dog."


He is a very social pup and likes to make the rounds to all our neighbor's houses.  And if he sees the door open, he will gladly go in and do some vacuuming in the kitchen!

Tom and I went to a wedding... and he wore a bow tie!


Niki and I
Another pic of Rooney, just because I love him so...


Cooper had his LAST day of preschool.  Yes, he will start kindergarten in the fall.




Our kind neighbors let Tom borrow his Harley for a little ride.


Our Harlie loved it.



So cute!

One night, Tom and I were out at a bar celebrating a friend's Ironman achievement (Rick Tangard is awesome, by the way) and in walked my niece.  That was a first!

Me and Jordan
I started this post a week ago.  But I get so little time in front of my computer these days, I wasn't able to finish it.  Between swim team, working part-time, running, etc., it's been crazy.  But, after school is done (a week from tomorrow!) swim team meets in the mornings, which will be SO much better.  Right now it's from 5 to 6pm.  So, I have to take all three kids, plus all of Harlie's gear and oxygen and I have to watch her like a hawk. So, we haven't been getting home until 6:30ish, with three wet kids, no dinner and Tom's been working late.   I hate to sound like a wimp, but it's exhausting.

The first time I took Harlie to the pool was a little stressful.  I really felt like everyone there was staring at us.  And I'm sure that's not true.  Or, perhaps they were admiring how cute she is... regardless, I felt super self conscious and I just wanted to burst into tears.  In a weakness, I saw a friend and said to her, "Is it just me, or is everyone staring at us?"  And then I instantly regretted it.  It sounded really crappy.

But, we got through it.  And it was fine.  I'm sure that with more practice, I will get better at handling things and people will get used to seeing the oxygen tubing in the pool.


She is a lot of work at the pool.  But, she's worth it.  She really loves it.  Since she needs a float with a built in seat, we use two infant floats.  She's seven.  I guess we're really lucky that she's so small for her age.  We really go through some small oxygen tanks, though.  With her kicking her legs, I have to up the flow to keep her sats up.

Thank goodness for "adult swim" times!




Cooper had his last soccer game of the season.  Woohoo!



Tom and I went to my niece's (Jordan) college graduation party and my nephew's (Cutter) high school graduation party (they are siblings).  Then we left there to go to a wedding reception.

Tom and I

Allison and I
And, I decided to make another go for the Richmond marathon in November, along with these other crazies.

Keenan, Wendy, Natalie, Michelle, Molly, me, Aimee
I know, I'm nuts.  And, honestly, I'm not even sure I can pull it off.  But, I suppose you'll never know if you don't try.  So, I'm going to go as long as I can go.  My main concern is overall fatigue that impacts my ability to handle my life at home.  If that happens, I will back off and switch to the half.  And I will have no shame.  I no longer compare my time with other's.  Any day I can run is a good day, no matter what my time is.  And that's good enough for me!

Oh, and here's one more photo of the dog.

Look Mom!  Rooney's an astronaut!
So, that's what's been going on here.  Please send my Mom some good vibes for her chemo treatments.  This last one was a tough one.  She is going to take a little longer in between to give her a little more time of feeling good.  So, hopefully that will help her fight the next one better.

And things with Harlie are status quo for now.  Which, is a good thing.  It feels a little weird, though.  I feel like I'm dropping the ball somewhere.  So, I decided to work on getting her an appointment at a hospital that specializes in heart/lung transplants.  I don't like not knowing where we are.  I'd rather hear whatever they say, than sit here, not hearing anything at all.  The unknown seems scarier.  My imagination can take me to places I don't want to go.  So, I'll update you on that as it progresses.  I have a feeling it's not something that will happen soon, though.

More later (I hope!).

Much love,
Christy xo

3 comments:

Anonymous said...

Prayers for you guys and extras for Elaine!! I love that Rooney will just walk into your neighbors houses!! haha!! Just keep on, keepin' on - you're amazing XOXO

Love,
Liz

Betsy said...

You guys are in my thoughts and prayers for sure. =)

Susan said...

Glad to see an update. I've been wondering. Busy, busy you've been! Glad there's been a lot of good. Hopefully it helps distract some from the concerns about Harlie. As always I'm amazed at all you manage to do. I'm glad you had a nice Mother's Day. Happy Belated Birthday to Murphy! And I will think good thoughts for your mom. You may not be feeling like yourself but at least you look great! ;) Seriously though, I hope your spirits pick up. Call any time. XOXO.