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Showing posts from September, 2010

700.

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This is my 700th post. If I try to think of something amazing or tremendously important to write about then I'll freeze up and stop writing and think I have to wait until something incredible happens.

Samuel's pubic tube valve is still off and he seems to be wetting his diapers well enough. That's a good sign. Hopefully we'll do a bladder scan in a bit and see how it's going.

Samuel's been in a GREAT mood today. He's been playful and laughing. He walked over to the "bed" Mike and I use, it's like a built in couch of sorts. Anyway, he walked over to it with help and sat on the bed and played with Libby. It's really fun to see him be himself.

Um, the other news is we have a dog. It's mostly my brother, Christopher's, dog. But it's an indoor dog so we all have adopted it. It's an Italian Greyhound. It's brown and white and looks like a miniature deer. It's funky looking with it's long thin legs and neck but it's a…

Not okay.

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Last night was peaceful for Samuel. I didn't get much sleep though. I kept waking up and rolling from side to side. Okay, more like heaving myself from side to side over again and again. But otherwise all was fine.

He threw up several times this morning and was a bit groggy but he picked up in the afternoon.

There's a special time vacuum being in the hospital. The hours are sucked away and you're left wondering what day it is and if it's day or night and what is going on.

Picked up some books to read to Libby about cancer.

Feeling ready to scream. I'm just frustrated. Tired of the hospital. Tired of being apart from Mike. Tired of Samuel being in pain. Tired of feeling so helpless.

It's hard to let tension out when you can't exercise and you can't beat anyone up :)

So I'm working on "constructive" ways to release stress.

My life is overwhelming. Don't tell me it's going to be okay. Don't tell me I'm going to make it. I just ne…
Some days were made for the blues. The rain has been pouring all day. Wearing my trusty red rain boots.

Did something this week... I entered the Real Simple Life Lesson Essay Contest. You're supposed to finish the sentence, "I never thought I'd..." in under 1,500 words. I wrote about Samuel and his cancer. I'd post it but I don't know if that will mean I would be disqualified. Just happy that I did it and turned it in on time.

Feeling pregnant. Going to stay the night at the hospital and be near my dear Samuel. Praying Mike will get a good nights sleep. He's very exhausted.

Bought a Snickers for dinner tonight. Yes, very healthy. Desperate times call for desperate measures.

Hippo and hair.

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I got a haircut a couple of weeks ago. I like it. It feels nice to finally do something with my hair. My last haircut was in February.

Here's my 32 weeks picture of my belly. Yes, I know. I do look a little like a hippo. Actually, this picture doesn't look that bad. it's just in real life I feel like a hippo. I'm where I was when I had the twins. I think I can make it further :)

A little mouse named Ian.

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My cousin Emily stayed the night this week-end. She had an apple by her bedside when she fell asleep. When she was woken at 6:15 in the morning by Ian she found this by her bed.

When asked, "Did you do this Ian?"

He replied, "Yeah."

Paint

So Samuel's room is being painted today. Flooring goes in tomorrow. Excited that his room will be done. Next major project is living room and then we'll continue on from there. Home remodeling in addition to all that's going on can be a little stressful but I'm thankful for all the people who are helping and have come along side us. It's truly a team initiative. We are so blessed.

Samuel's doing his schooling right now. He loves when Miss Shannon comes and does school. He plays all sorts of educational games(numbers, letters, colors, shapes, opposites, etc.) on an ipad. He thinks it's so cool.

Hoping to have him home soon. Maybe as soon as next week.
We've got to get the pubic tubic out and then go from there.

Some great news.

Samuel's been sleeping since I got here (at CHKD). We (Mike and I) arrived around 3 or so. This morning we got a suprise call... guess what, we're going to do a CT scan TODAY! Unfortunately we weren't here when it happened but heard that it went well and he was really happy on "silly juice" (sedation medicine). Thankfully my Aunt was here at the time.

And we got the results.... Drumroll please...

His tumor has shrunk by over half! They only did an abdominal scan so we don't know about the lung but I think we're doing GREAT!

He's continuing to wet his diapers but still isn't quite back to normal. They don't want to take the tube out until they know he doesn't need it.

All in all, happy day. Hoping to talk to an oncologist about what does this mean about going home? Still have preparations to do and also have training we need... but we keep going in the right direction!

Perspective Shift

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I was thinking of all the other things going on in our lives that aren't centered around Samuel. Libby had lost her first tooth and now has a second wiggly tooth. I just got a haircut last week. I will try and post pictures soon. Michael is walking- full on walking... no holding hands or furniture... it's a sight to behold.

It's funny how your perspective shifts with something like this recent event in our life. Prior (b.c.-before cancer) I was striving so hard to get Samuel potty-trained and was so excited that we had arrived. And then I was upset by the set-back of it. And now I'm thrilled that he's wetting his diapers. Because of what it means. It's funny how perspective does that.

I used to be upset or be worried about things that don't even phase me anymore. The things that truly matter get brought to center stage and everything else gets pushed into the wings.

Even when you get enough sleep you still don't feel well-rested. Most nights I feel like …

Party.

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Thursday night to Friday a.m. I was up with Samuel about 15 times to push his morphine button or help him throw up. I just hold the bucket. I was there til Friday evening. Mike and I got to step out and have some dinner and TIME together. He also came home. (2 nights in a row). And I was there. We were both home at the same time (definition of miracle). A huge thanks to Mike's Dad for watching Samuel overnight.


We had a birthday party to go to this morning at the Norfolk Botanical Gardens. The kids had a great time. My heart was sad that Samuel wasn't there. It was really obvious to me that he was missing.

Samuel had a better day today. I didn't get to see him til this evening but he was perky and cheerful. We had a little pizza party in the hospital's playroom to celebrate my mom's birthday. He was so happy to participate and loved being at a "Burfday Party". I think my Mom enjoyed it as well. I had made a Funfetti Cake. We had birthday hats, napkins, pla…
Bad day for Samuel. He's in a lot of pain. He's getting a blood transfusion as I type. I'm going to stay the night to relieve Mike. Seeing as this is one of the worst days he's had I don't know how well it will go.

Praying for grace.
Samuel's thrown up 3 times tonight but has been a complete champ about it. We're listening to my favorite worship CD (Sing Over Me). He's fast asleep right now. The music is soothing. And although targeted for children it's wonderful for adults. Rich truths. Peaceful sounds.

It's so great to be near Samuel for such an extended period of time. It's my hope that Mike is able to get some much needed rest and refreshment.

I'm going to bed soon.

I just wanted to recount a couple funny things.

Libby told Nurse Casey today. "I'm 5. I'm smart and I'm organized."

My brother Christopher and I were on the elevator recently. It was quite crowded and full of nurses and visitors. Christopher was asking me about Michael and what his condition was. So I told him,"cerebral palsy" and he had all these questions for me about it. A mom stepped out of the elevator and she said, "Wow, you've given me so much to be thankful for."

The eleva…

You know you're CRAZY when...

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-you're up 20 minutes til one in the morning and your eating caramel kettle corn and doing your online administrative tasks.
-you impulsively buy chocolate but don't eat it. It's just on permanent hold in your purse.
-you're pregnant but you're upset that you've gained two pounds.
-you sing at the top of your lungs "Singing in the Rain" while jumping in puddles in your rain boots.
-You worry about your child being accepted at school while another one of your children has cancer.
-You get a crazy high from buying yourself flowers.
-You give birth to 5 children in 6 years.
-You question your sanity most days.
-You tell your friends you have to "go potty" when you excuse yourself for the restroom.
-You feel like eating ColdStone ice-cream for dinner.
-You wonder if the walking to and from the hospital counts as "real exercise"
-You get stared at by strangers in Target as you ride in your electric shopping cart because you're supposed to stay…

Today.

I went to church today... again! It was great. The message was really encouraging. The current series is called Christ: our hope in trials. Eric gave a great message on loving one another.

I was able to have lunch with a friend afterwards and felt encouraged to my soul... just being able to talk about whatever's on my mind and not having to use a filter.

Mike and Libby are having a date today... the donut shop and barnes and noble... what fun :) I'm so glad she gets to ahve time with her Papa.

I haven't been online for several days... very limited access as of late.

Kids are doing well and enjoying school. We're starting to create a routine... yay! I have a doctor's appt. tomorrow. Libby has the dentist on Tuesday. Michael is getting fitted for braces on his legs on Wednesday and has speech on Thursday.

The chemo has been making Samuel sick. In spite of it he's been really cheerful at times and has even enjoyed being hugged and tickled on occasion.

Days feel long …

Magic Shoes.

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Mike bought me magic shoes this past week-end. Of course the picture is not doing the fabulous pair justice but that's okay... I know what they look like. They're embroidered with flowers and silver thread and sparkly sequins and the most dazzling twinkly silver ever.

When I put them on I feel like a combination of Dorothy (of the Wizard of Oz) and ballerina princess.

Never thought a pair of shoes could transform me so much :)

THANK YOU!!!

We have been so blessed by the generous love and financial support from so many! Thank you!

We are using the money for the following purchases:

1.) New Flooring. We need to replace the carpets (they're over 10 years old) and some of them have mold. So starting with Samuel's room we'll go out from there.

2.) New mattresses. For Samuel's bed in his room and for the one he will have downstairs in the playroom.

3.) Paint. Enough said :)

4.) Black out shades for his room.

Thanks for your love and prayers. We are so grateful for the practical care we are receiving!
Libby and Michael had a great first day of school. It was so weird not having Samuel with us. It's in those kind of moments that his absence is so blaring.

Samuel had an eventful day. His catheter came out AGAIN! It had also come out yesterday. After several failed attempts to get it back in he had to go to the operating room and have the urologist put in a supra pubic valve. This way it won't get pulled out. It also gives us control of opening and closing the urine valve. The good thing is when we want to try and see if he's "ready" to urinate himself there's no pulling a tube out and putting it back in if it fails.

Because of the failed attempts at putting in the foley catheter his urethra is currently mangled :(

Poor Mike had to be with Samuel and watch him suffer. Not a good day for him.

Tired and ready for bed. Getting ready to leave the hospital and go home. There was so much paperwork to do today for the kids school- so glad I got it done!

Tomorrow is anoth…
7 years today. Spending time with Mike. Enjoying it very much. Unfortunately Peter keeps pushing on one of my main arteries which directs blood flow and I keep feeling like I'm going to pass out. That parts not so good. So going to go to Babies R'Us and get a maternity support belt. That should help.

And then dinner... at hmm, Cheesecake Factory or Carrabba's... It's a win/win.

Doing it Again!

Yep, this is a repeat. It was so successful the first go around... but some people didn't get to place their orders. Here's another chance for those who missed it!

Help Us Whip Cancer Pampered Chef Party

Proceeds Go to Samuel Napier Fund {20% of purchases (before tax and s&h)}

Please make online order purchase by September 15, 2010

1.) Go to: www.pamperedchef.biz/jennifernapier
2.) Click on Shop Online.
3.) Click on Invited to a show and would like to place an order.
4.) Host First Name Type: Samuel
Host Last Name type: Napier
5.) From Hosts Listed Below click on Samuel Napier
6.) Shop!

*If you’re local feel free to ship to host. If you live away please pay for direct shipping and handling!*

A room for Samuel.

We're trying to create a new room for Samuel. We had a great idea of moving the twins into Libby's room and letting Libby and Samuel share a room. My Dad pointed out though that this could be a problem when Samuel is really sick on chemo. That might be hard for Libby to hear Samuel throwing up or moaning in the night.

So, solution 2. We're going to create a "home" for Christopher on the 3rd floor. He needs electric and plumbing upstairs as well as insulation and drywall, etc. But if Christopher has his own space then we'll turn his room into Libby's room. And use Libby's room to be Samuel's room. We'll need to paint and put in some kind of flooring that allows us to clean up easily. Fake wood or even some kind of laminate. Cleaning vomit out of carpet isn't very easy. Plus who knows what other messes will need cleaning :) I'm hoping to get new sheets for him and plenty on hand so we can change his sheets as needed.

The good thing is if w…

Raw.

I've been so frustrated with how quickly I get annoyed at everything. And as my cousin reminded me today. "You're upset that you're not perfect." Yep, that's exactly it. i want my response to be perfect to this imperfect situation. to my imperfect hormones. my imperfect feelings.

I feel like one large raw nerve.

I explained it to a friend this way. It's like you have a migraine (without having a migraine)... you're super sensitive to noise, to light, to people.

Sometimes it feels like the whole world, when I'm out in public, is mocking me. I'm so sensitive to everything around me.

I sat in the car and cried for a good solid ten minutes today.

So tired of being uber-sensitive girl.

BTW- we are looking for a punching bag. For real. I'm not saying it to be cute. We really need one. We're looking for healthy ways to deal with our aggressive tendencies :)

7 years.

Monday will be Mike and my 7th Anniversary. It's been a busy 7 years. 4 children soon to be 5. Many medical crisis, losses, gains, struggles, victories, sorrows, joys, and a lot of love.

I'm thankful to have the kind of husband I have. He's amazing. He's my best friend and my faithful love. It's been a wild journey but there's no one else I'd rather go through it with than him.

This wasn't the way we were planning on spending our Anniversary... but hopefully we can make the most of it somehow :)

About Samuel's Fund - Clarifications and Contingencies

Mike and I were talking and we wanted to be sure that we were clear on Samuel's Fund. We're using the proceeds we raise for Samuel's needs, especially when we come home. We'll also be using it for gas money to get us to and fro from the hospital. In short, it is a contingency fund. We currently have insurance for Samuel, but we don't know how it will play out in the future. So, again, it's a contingency fund.

We just wanted to be clear that we haven't started to get bills from the hospital yet and that the fund is only for that.

If that throws anyone or makes you uncomfortable about giving or about having already given, you can email mike @ michaelsnapier@gmail.com. You can "undonate" or make a special request for how money you've donated could be used.

We are so touched by people's response and donations we just wanted to be sure that people knew what they were giving towards.

Being Drawn.

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Why don't you sit down and have a beer with me. Well, it's a root beer, I'm drinking but it's IBC so that makes it okay :)

How in the world am I supposed to "make my life work?" I don't know how to juggle the twins and Libby and Samuel. I don't know how to do the back and forth from the hospital... trying to find time for my husband... managing school next week... dealing with Ian (bec. he's not accepted to go to school at Grassfield Elementary)... care for the house... take it easy so I don't go into labor... and then manage a newborn when he comes.

Whew.

I'm a planner. I like organization. I like to see things done neatly and orderly and properly. I'm a first-born, type A personality for goodness sakes! So, how do we do it when we're only given the next day at a time?

I feel like God's trying to draw my heart. He's reminding me of the Israelites and the Manna in the desert. He met their daily needs. I think He wants to remin…

current needs:

Thanks for all the gifts and packages and checks and gift cards! What a huge help and blessing it has been.

Our current needs are the following:

-2 new/gently used pack n'plays. For whatever reason the ones we had have bit the dust... and at around the same time.

-a crib for Michael. Another thing that has fallen apart and desperately needs to be replaced..

-a twin bed for Samuel. Frame/Mattress, etc. We want to have one for the downstairs playroom that we can use as a "couch" but also a bed for him. This way we can read books together, kids can play together and Samuel can rest but watch his siblings.

-a twin blow up mattress for our bedroom. Some nights he will probably need to be with us. This way we can use it and yet put it away when not needed.

-We are purchasing paint. (if you want to chip in for a Lowe's or Wal-mart card that would be great!)

-As always gift cards or greatly appreciated (gas, meals, Starbucks, Target, etc.)

Thanks for your love, prayers, and support!

thoughts..

I don't know how many of you have ever been in a crisis before... but let me explain if you never have... sometimes you can just be uber-irritable. It's funny things that would just mildly bug you before become the worst things ever. The temptation to want to smack people increases a 100 fold with each passing day. It takes a lot of self-control and patience to not lose it with people. And then it makes me annoyed with myself that I'm acting this way... that I let everything get under my skin. That everytime someone cuts me off in traffic or bumps my physical person, or is just mildly rude makes me want to errupt like a volcano.

The kids start school next week and I feel so unready for life. I have school supplies and backpacks, etc. I've gotten the transportation situation under control. But I just don't feel... I don't know... like life should be progressing yet.

Samuel's still in the hospital and will continue to be for a while. The house feels hollow with…