Keeping up with Chad

Since Chad’s seizure in May, I haven’t had much to share. Things have been relatively quiet on the Chad front.
He is having a few issues, but nothing completely unexpected.
Some days are better than others, and we just deal with it. Everyday is a new normal.

Chad has had a problem with his right side (arm & leg) for quite a while. Neither of us feel he fully regained his strength after his tumor resection in March 2009, despite frequently passing the routine neuro evaluations for strength control.
He has tremor-like movements in his right hand daily. If he were to hold a sheet of paper in his right hand as still as he possibly could, it would still wave as if a breeze were blowing.
His right leg and foot have started to behave a little (more) erratically since the May seizure.
When we saw his neurologist at the end of May, she finally diagnosed him with Apraxia on his right side; which is a disorder of motor planning. It’s caused by damage to specific areas of the brain, characterized by loss of the ability to execute or carry out learned purposeful movements.
He has a hard time going up and down stairs, as he just cannot make his right foot move the way it should. This means he trips and sometimes falls; and he fell quite a bit last week.
Although I don’t see it in the immediate future, I think having a cane of walker will be very beneficial in time. There is nothing we can do about the Apraxia; we just have to recognize (and remember) Chad’s limits. The lack of motor control is more exaggerated when he is over-tired, for example.
Chad’s memory is still patchy. He remembers lots of things for different reason ans associations; and sometimes it baffles me what he actually does remember versus what he does not. The brain is a tricky, tricky thing!

He is having some increased difficulty remembering his medications, their purposes, his medication schedule and ordering schedule.
I try to give him as much autonomy as possible with his medications, and I check behind him frequently.
With the addition of new meds and changes in  ongoing drugs last month, he has just been a little more confused.
He has been organizing his pills in a pill box since this journey began in November 2007; but it’s getting a little complicated.
Last week, I made us each a list of his current medications, dosages and schedules for each of our wallets. I just couldn’t remember all the changes recently, and felt it best to have a list to hand to the nurses when they ask for changes in meds.

Just this morning, I made a new list for Chad to tape to his medication locker.
It lists each medication and how many pills equal the proper dose. There are two columns for AM and PM, so I hope this will help him feel more in control of counting out his medications. And I will feel better when I double-check behind him.

The ordering part is driving me crazy. I wish I could order everything on one specific day of the month. It’s just not working out that way – yet.

We venture to Winston-Salem next Tuesday (June 29) for another MRI and a discussion with Dr. T.
We still have so many questions about Chad’s current state of health and mental clarity — and I’m growing increasingly frustrated with the lack of answers (or a plan of action).

Thank you for your continued prayers, support and positive thoughts.

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admin, June 21st 2010 | Posted in Chad, Chatter

Full Day + Heat = Fullblown Meltdown

The girls & I had a full day today.

Doctor’s appointment this morning.
Bathroom break.
Followed by a playdate and shady picnic with some buddies.
Bathroom break.
Followed by a trip to our favorite wholesale club.
Bathroom break.
Followed by a leisurely stroll through a sporting goods store.
Bathroom break.
Followed by a trip to our favorite retail super center.
Followed by a trip to my favorite little thrift store. Which was closed. Unfair.
Followed by a prompt trip home.
Bathroom break.
Followed by a nice little meltdown.
Followed by….silence.

I wandered off to see what had happened to my quite cantankerous four-year-old.

Poor kid. She didn’t even make it to the bed!

cai sleeps

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admin, June 18th 2010 | Posted in Chatter, the girls

Cailyn’s Photoshoot

You saw some of the pictures from Cailyn’s 4-year photo shoot at the end of her birthday video last week. I couldn’t fit them all in, so I decided to share them here.
She picked out her own clothes – which you’ll know is just Cailyn, if you have ever met her. I promise you, this child will be in the entertainment industry someday. I see her doing wardrobe styling or something like that. It’s just her thang…

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We also had a friend join us. Spencer will be turning two in a few weeks, so we took his two-year-old portraits at the same location. He is such a sweet, sweet boy!
I was really happy with this location, until the mosquitoes attacked. Note to self: always have bug spray at hand.
No. Matter. What.


s15s10s6s5

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admin, June 15th 2010 | Posted in Chatter, photography

Happy Birthday, my sweet Cailyn!

Dearest Cailyn,
Four short years ago, I was anxiously awaiting the arrival of my second daughter.
I fantasized about your newborn scent, the grasp of your tiny fingers upon mine and the first precious time I would see you smile or hear you giggle. I hoped you would have a fantastic bond with your older sister. And I just knew that you would complete the circle of our family.

Now, four years later, you are still my baby.
You still like to rest your hand in mine.
Your smile and giggle still make me chuckle.
You are your sister’s best friend. And at times, her worst enemy. But I hear that’s pretty typical with sisters.

You have grown so much this last year.
You started preschool. The first few days, you cried. And I expected it. Anyone that knows you also knows that you are a true mommy’s girl. You would grip my legs/arm/shirt/whatever as tightly as you could when presented with strangers or a different situation. But this year? This year the grasp has loosened.

You have learned to write your name and draw dandy little people and animals.
You make me cards every chance you get and I’m afraid I will have to rent a storage unit to house all of your artwork.

Precious, you are.

This year, though, you have also found your sass. And your squeal. And your attitude.
You are finding yourself.
I feel so privileged to have a front row seat to the everyday theatrics of Cailyn’s World.

You love dressing up and having tea parties.
You play with your Littlest Pet Shop collection for hours.
You have learned what a Pinky Promise is and we perform this little ritual several times a week when I mention we might have an ice cream sundae for good behavior.
You like things done a certain way, or Cailyn’s World falls apart.
And that’s okay, because you’re also learning a lot about compromise and consequences.

Before school started this year, we moved you out of your sister’s bedroom and gave you your very own room.
You were so proud. You painstakingly placed your toys and cherished possessions in “just da wight spot”. Oh, and I pity the fool who tried to “clean” your room, for you knew where each item belonged.
You started announcing it was time to nap and would happily tuck yourself into your own bed whenever you felt the need. You just liked hanging out in there.
You still do, but I’m finding you snuggled up next to your sister more and more these days. And I think it’s absolutely adorable that you would rather fight for your share of the blanket than be apart from Carys.
You love her so, so much.

You’ve turned into Daddy’s Buddy this year, too.
You’ve always been attached to my hip; and I have SO loved walking into the the living room to see you cuddled with Daddy in his chair, watching television. You’ve loved having him home so much.
You want to help him do things, like cut the grass and check the mail. And you get so excited when Daddy joins us for an excursion to the park, beach or even the grocery store.

Your favorite things in the world, in no particular order, are:
Maisy Mouse, your beloved tag-a-long.
Being outside until you get dirty. Then you’re done.
Drawing.
Lucy the wonder dog.
Fiona the wonder cat.
PlayDoh.
Watermelon.
Ice water.
“Swimming”. Which is really you just begging me to hold you in the pool, lake or ocean.
Naps time. Seriously. You love a “big fat nap.”
Gummy worms.
Bubble gum. You try so hard to blow bubbles.

I still can’t believe you’re four.
Sometimes you act much older than that.
And sometime you have to remind me that you “are still vewy tiny, Mommy”.

Very often, you will stop what you’re doing and run to me, so excited.
“What is it, CaiCai?”
“I just had to tell you I love you so much, Mommy!”
And off you go, to play and laugh.
Those are the best moments of my day, every day.

My baby.
My sweet, sweet Cailyn.

Happy Birthday sweet girl.
I hope you always know I love you as high as the sky and as deep as the ocean.

Music: John Mayer, The Heart of Life

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admin, June 11th 2010 | Posted in Chatter, the girls

Licky-what? and other Lanford updates

After waiting on pins & needles all weekend about Cailyn’s blood test, I heard from our PA Monday evening. The two tests he had in hand were negative. No Lyme’s. No Rocky Mountain Spotted Fever. But we had to wait for the third test to come back Tuesday.

As luck would have it, I was away with Chad Tuesday afternoon while he had PRK performed (a laser eye surgery to try and help his right eye focus better). I missed the call, but my mom was here to talk to the PA.

“The third test is positive for a exposure to ehrlichiosis.”  And now I’ll just paraphrase:  with her current antibiotic, she should be just fine.
What the heck is licky-what?
You can read more about it at the CDC website, which is just what I did. (Click on CDC and it will take you straight to the ehrlichiosis page.)

It’s a bacterial illness that causes flu-like symptoms and can lead to more serious stuff if left untreated. Thankfully, we were on top of it and the little miss will be alright. If she shows any further symptoms this Summer, we may have to have her tested for Lyme’s again, as it can sometimes take a while to show up in the bloodstream and mimics many other common illnesses, so it’s hard to diagnose at times. I’m hoping we won’t have to worry about it. And rest assured I’ll freak out every time she catches a tiny cold this Summer.

She turns FOUR very soon and we’re planning her birthday party. She is so excited!

–

Chad handled his PRK well. He was in some pain last night, but it seems to be a bit better today. He had a follow-up exam this morning and will have to go in again on Friday to (maybe) have the contact lens removed in his right eye. The lens is there temporarily to help protect his eye and help everything stay in place as it heals.
This is the third eye procedure he’s had done in three years, so we’re hopeful that this one will help him see better and we’ll be done with laser eye surgeries.

He is chronically tired, which I don’t see improving. We’ve finally gotten the green light to try more Ritalin during the day, so we’ll try that and see if it helps any.

He has an appointment with his oncologist next week, as well as his neurologist. I see some more “trial-and-error” talks coming, which just makes me tired.

He did join us at the lake on Saturday for my cousin’s 21st birthday party. It was a long day for him, but I he stuck it out all day.

He cut his hair all off again. I’ll make him pose for a picture when he’s feeling up to it.
He looks like a fresh Army recruit, all shaved down.

–

Carys is doing great! She will complete kindergarten in a few more weeks. Her last day is June 10.
I can’t wait to see her walk across the stage for kinder graduation. So sweet!

–

And for me?
Staying busy.
Watching the miles turn over on the van from all the driving I’ve done recently.
Photoshoots are filling my free time! And I couldn’t be more excited about the things that are coming up!

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admin, May 19th 2010 | Posted in Chad, Chatter, the girls

Couldn’t make this stuff up if i tried! (update at end)

I was hoping for a restful and uneventful end to our week.
But. No.

Chad is doing well. He is still extremely tired, which is to be expected. He says he feels well (”normal” for him, anyway).

Yesterday afternoon, Cailyn came down with a fever. She was very tired. Her nose was running a bit — so I knew it was a cold coming on.
But. Wait.

Yesterday marked the tenth day that she was bitten by a deer tick. The tick was probably there for about 18 hours, maybe a little more, before we discovered it. I removed it with tweezers and I think I removed the whole thing. Deer ticks are so tiny that it can be hard to tell. Later that day, we found another tick on her collar bone, but it was much easier to remove.

Today…Cailyn has been complaining of flu-like symptoms. Fever. Chills. Headache.
And she has this on her back, right between her shoulder blades where the tick was embedded.

IMG_1549b

She has an appointment with her pediatrician at 11 this morning. She is feel so puny and I just hate that such a small little bug can wreak so much havoc on her little body.

I will update when I know what’s going on with her. I’m trying to stop Googling things about deer tick bites because it’s making me sick to my stomach.

Updated Saturday, 5/15 at 10:30am:
Cailyn was so lethargic at the doctor’s office yesterday that she didn’t make a sound or even close her eyes during the blood draw. They put the tourniquet on her tiny little arm and I was shocked that she didn’t freak out. I knew she felt bad, but geesh! She was such a trooper through all that.

The bloodwork results won’t be back until Tuesday.
We’re told it’s unlikely that it’s Lyme’s Disease (”rare” in our area), but it could be Rocky Mountain Spotted Fever. Or, Cailyn could have just had a localized reaction the bite and the reaction is just very similar to the more serious RMSF.

In any event, Cailyn also has a raging double ear infection — and hadn’t complained about her ears at all.
Her fever was extremely hard to manage yesterday, but finally broke after I made her soak in the tub all afternoon.
It’s hovering around 99 degrees today – I’ll take it!

She is on a heavy dose of antibiotics that are playing double-duty for the ear infections and tick bite reaction/infection.
I’m supposed to take her back in on Monday so they can have another look.

Thanks for keeping my little diva in your thoughts & prayers! She is, mostly, back to her diva ways as of this morning.

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admin, May 14th 2010 | Posted in Chad, Chatter, the girls

Weight Lifting

Did you know I was a weight lifter?
I am.

Seriously.

You can stop snickering now…

Yea, yea. I know you’re thinking, “She sure doesn’t look like a weight lifter…”

Well.
I don’t lift traditional weights.

Since August 4, 2001, I have been lifting the marriage weight. And man, is that ever tough work!
I juggled the weights of new home ownership and fresh-from-college-now-I-have-a-real-job weights that same year.

Since Carys was born in 2003, and then Cailyn in 2006, I have lifted the weight of motherhood.
Sometimes those little blue-eyed, blond-haired weights are heavier than I could have ever imagined.

As if those weights weren’t enough, I added the diabetic weight in 2006. Phooey!

Then, with Chad’s surprising diagnosis of brain cancer and the discovery of IT in 2007, I have added way more weights that I would like.

The emotional, physical and financial weights of living a life with two young daughters, a husband with a devastating disease, diabetes and all the other stuff….well, it’s almost too much for me to handle at times.

I would look at other people in my life and wonder how they seem to lift similar weights so effortlessly.
I just couldn’t understand how they were able to build a positive emotional workout while I was struggling to lift the daily weights of life and was often out of breath from sheer frustration and exhaustion.

People often ask me how I juggle it all.
And the answer is simple. And it’s no secret.
I do my best. And God handles the rest.

When I sense that I cannot handle one more possible thing in my life, God shows me that I can.
Sometimes, He adds more for me to juggle. And He teaches me that I can handle anything.
I can do it. I can do anything.
And you can, too.

The weights I lift on a daily basis can be tricky; true.
And sometimes I do wonder how easy life would be without such struggles and hardships.
But then I always come to the same conclusion; everyone has weights in their life.
Every single person has something that they struggle to contain or let go of; it’s just the way life is.
And if you think my weights are heavier than anyone else’s…well, that’s not true.
If you have a weight in your life, whether it be illness, unemployment, depression – whatever, you don’t have to lift it alone.

At Chad’s fundraiser, we had the privilege of witnessing a great weight being plucked from our lives.
I’m not sure if I was reaching a breaking point, or if we were just “due” some good news, but a huge weight has been lifted from our family. I can not tell you the immediate calmness and security I have felt since that day. To see all the loving and comforting faces, smiles and tears…it’s taken me some time to process it all.

People are so good to us; and we are so thankful.
We give back whenever we can and we appreciate all of you who did the same.

In the past eleven nights, I have slept more soundly and peacefully than I have in a long, long time.

Thank you.
Thank you.
Thank you.

We have been given an immediate release of stress.
We can breathe again, a little easier at least.
The weight has been lifted, and I thank God that He has allowed us to be a part of such an overwhelming  testimony of what can be provided when you trust Him.

He is the Ultimate Weight Lifter.
And I am so grateful that He carries our load.

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admin, May 5th 2010 | Posted in Chad, Chatter, d*life, the girls

Quite Smitten

Oh. My. Sweetness.

I let Josie out this morning before the girls got up. When she was done with her business outside, she leisurely strolled through the kitchen. Then, as if she instantly remembered the girls, she made a mad dash for the end of the hallway where their bedrooms are.

Cailyn’s door was open, so Josie dove onto her bed first; her little nubby tail was electric! She sniffed the bed and was extremely disappointed that Cai wasn’t there. (Cailyn has been having nightmares and is scared of monsters all of a sudden, so she often ends up in bed with her sister).
Josie quickly realized she needed to go to the other bedroom; and she leaped onto the bed so happily. They were awakened by kisses and Josie love. Cailyn was giddy. Carys took a little longer, but she was soon awake and doling out hugs and kisses to her new little best friend.

At night, Josie paces from each of the girls’ bedrooms to check on them.
I hate having to put her in her crate at night when she looks so cozy cuddled up on one of their beds with them.

Josie was just laying there this morning, rolled over on her back with her feet in the air and tongue wagging as fast as her tail.
And I thought, “Yes. This is what was missing.”
Seems a little silly, I know.
But I genuinely forgot how good it feels to have a dog. Their constant companionship and love; it’s just so comforting.
And everyone seems so much happier.
All thanks to a scrappy little 13-pound rescue Jack Russell.

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admin, May 4th 2010 | Posted in Chatter, the girls

Busy weekend

On Friday, Carys had her adenoids removed and her second set of ear tubes placed.
Hopefully, we can ward off those pesky ear infections for a while!
She has felt well all weekend, but started feeling a little puny this afternoon. I think it has all finally caught up with her.
And I bet it doesn’t “help” that she’s been screaming at her sister.
I’m undecided if she will go to school tomorrow.
Part of me thinks she may be feeling a little worse today because she knows she has to go back to school tomorrow…but I would hate to send her if she genuinely felt bad.
We’ll play it by ear.

On Saturday, Chad & I took the girls to Clemmons State Park to feed the fish and turtles. We had a moldy loaf of bread, so we had to find something to do with it…
We walked a bit, but I really didn’t want to stress Carys out.
Then a trip to WalMart — I swear I should just live in a tent in the parking lot.
There is always something I forget or miss; and I make a list every time I go. I don’t get it.
It’s a like a retail black hole.
(Ugh. And as I type this, I realize I forgot bread. Again.)

I have been grilling Chad for a few weeks now about getting a dog.
Truth be told, I miss having one around. I am a cat person. And a dog person. I like both. Equally.

I knew the girls would be thrilled, and so very excited.
Chad? Not so much.
He did finally give up and told me I could get a dog.
I think it will be great for him, once he warms up to her.
He was so attached to Zoe and Sisco, our beagles, that I think it may take a little extra time.

But he will.
I mean, seriously.

Just look at this sweet Jack Russell Terrier face.
NC660.16277694-2-pnIMG_0994

She was at a local rescue center, and I couldn’t wait to get my hands on her today. Her name was Sprite, originally. But the girls have already named her Lucy Princess — or Lucy for short. And now she is Josie…poor dog is going to have an identity crisis.

She was set to be euthanized about 2 weeks ago at a shelter in SC, and the Rescue took her in.
I was told she was a JRT mix, but I’m not so sure. I really think she’s 100% JRT — and more excited that she seems to be so calm and mellow-natured.
We need to get some weight on her. Shouldn’t be a problem in this house!

Carys & Cailyn absolutely loved helping Josie investigate the yard and throw balls to her all afternoon.
Andy Josie is just as smitten with them! She paced between their two bedrooms all evening, checking on them. If someone coughed, Josie was right there. If someone rolled over and the bed made a noise, Josie was right there. It was so sweet!

I think we’re all going to have a great time getting to know her!

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admin, May 2nd 2010 | Posted in Chad, Chatter, the girls

Calling all triangle-area brain tumor patients!

I think I may have lost my mind — but I have been thinking of doing this for a while.

If you know anyone who has a brain tumor and/or brain cancer or cares for a brain tumor/cancer patient, please  email me.

The reason?
I have been searching for a local support group for Chad. It would be a great asset to him (and our family) to be able to meet and talk with other people in a similar situation.
I have found a ton of cancer support groups in the area, but nothing specific to brain tumors and brain cancer.

I’m thinking of starting a Brain Tumor Support Group in the area.
We need to gauge response before I start this endeavor — and would love to have your help!

I’ll give more details as they become available.

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admin, April 28th 2010 | Posted in Chad, Chatter
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