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Peter's up. He's been screaming on and off for a few hours now. I'm tired and just want to go to bed. He has other plans. He doesn't seem gassy anymore but he's still agitated. He's "talked" a few times now. Making those sweet cooing sounds. He then launches into a full on roar. He's fed. He's clean. Sigh.

I actually burst a blood vessel in my eye. Due to crying or lack of sleep or stress... it's hard to tell which.

Man, its so easy to overlook the importance of sleep until you're not getting enough.

The other day Peter murmured, "agooo." Libby freaked out. "Mommy, did you hear that? He said his first words... "Agoo". Can you believe it?!"

She gets thrilled over his every little move. I love it. She's been such a big helper. She's quick to give him his passy when he's fussy. She talks to him in sweet tones. She helps me gather the shoes for the twins. She fetches a new shirt when oatmeal is adhere…
Okay, I want to post this on caring bridge... but the site has been spazzing out on me... so until I can post on it...

"Samuel had his old CVL taken out. He came home in the afternoon on Christmas Eve. We enjoyed Christmas at home as a family. It was a good day.

Samuel went to the Clinic on Tuesday. It was a much longer day than normal. It wasn't a lot to be done but there were a lot of people so it took longer than usual.

Samuels back in the hospital. He had surgery today and had a new CVL put in. Mike said Samuel was really unhappy after surgery but bounced back later and ate 3 bags of chips tonight! Yay!

He is able to get chemo so he will start tonight. he will be in through the week-end and on Monday they will do a CT scan and do a radiation simulation as well. It will be interesting to see how it all plays out."
Most days I think, Hm, that would be good to post on my blog... but I never get a moment to do it. Maybe it's a philosophical thought on life or a great quote from a book I'm reading or something cute the kids said. Or maybe it's major like surgery or whatever... the point is I can't keep up. I'm trying... and failing miserably.

even now i'm interrupted... peter has been crying most of the night...

i barely have a moment to think, much less express my thoughts.

“A Chinese proverb i like is, The best time to plant a tree is twenty years ago. The second best time is now.”

There are so many what ifs and if onlys I struggle with. I beat myself up over things I have done or didn't do in my past. But the point is the moment. The moment is now. How am I choosing to live my life right now. Instead of beating myself up over things I've not been able to do I want to focus on the good changes that are happening and I see.

Things have been tense between Mike and I. We&…
The clot has resolved itself. Samuel had his CVL taken out and has a medport temporarily installed in his arm. We're hoping to get him home tomorrow... Mike warned me that the doctors would prefer to keep him in because he needs a lot of stuff done medically but they understand that it's Christmas.

We'd rather be busy at home with him though than separated and in the hospital. Pray that God will help us. We'll be giving him multiple shots daily in his "love handles"... the kids has no fat... Oh I hate shots! Poor baby.

Libby and I frosted cookies with my grandmother today. It was a fun tradition.

I was blessed to have friends from church come clean the house... thank you Lori and Elaine. What a blessing.

My Dad's staying at the hospital tonight so Mike can come home! Yay. So much we need to talk about but we're both too exhausted.... so a movie perhaps instead. Sometimes you just need to relax and unwind....

Took some cute pics of Peter today... will post …

Samuel's OR experience today.

Samuel's CVL was supposed to come out today. Unfortunately when he was in the O.R. they did an EKG and saw that he had a clot at the end of his line (which is near his heart). So they stopped everything. He's going to be on anti-coagulants for a couple days and then they will try and do a repeat of the procedure. So he will be in until at least Christmas Eve. This is scary and also disappointing. We had hoped he would be home tomorrow...

So God willing this will work on Thursday and he'll come home on Friday. Next week he will get a new CVL line put in. We will see. So much going on.

Radiation is supposed to start Jan. 12th but it might get delayed if we can't get this 5 day chemo treatment done and then all his evaluation work: CT scan, MRI, bone scan, etc.

So there's the latest on Samuel
Television and internet capabilities are dangerous things.

When I was in the hospital, oh, one of my many occasions for pre-term labor with Peter, I was watching tv. Sounds innocent enough. Well, when it's 3 in the morning... scary things are on. Like ads for Body Shapers. Sunglasses with cool tints.... and YUDU's. What is a Yudu... you might be asking... let me tell you... it's something I totally want... but don't need. It's this really cool personal screen printing system. I'm into it. So anyway... I didn't do anything crazy last night... I just looked it up online and stared at it and got lost in all my potential amazing designs of crafting that would come about from this amazing invention....

Libby's been learning the differences between wants and needs. For homework the other night she had to fill in these blanks:

I need ______________________.

I want ______________________.

Hmmm. She filled in the following:

I need shelter.

I want lollipops.

Oh the sweet…
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Piglet sidled up to Pooh from behind. "Pooh!" he whispered. "Yes, Piglet?" "Nothing," said Piglet, taking Pooh's paw. "I just wanted to be sure of you." ~A.A. Milne
Um, is anyone reading my blog? Just wondering....

My personal night owl.

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So they think the infection Samuel has came from his CVL. This means that they are monitoring it. If it hasn't cleared in the next 48 hours we will have to replace it.... surgery. Yuck.

Samuel's oncologist still hopes to start chemo on Monday... which means he will be until Christmas Eve and possibly Christmas. That's the plan if his CVL doesn't have to be replaced. Crazy.

Mike just called and said Samuels been moved back to the cancer floor. He's out of the ICU. His fever broke this morning.
So today starts a five day admission for Samuel... so we thought.

I took Samuel in to the clinic. His blood levels looked good so he was getting admitted. In the afternoon he started throwing up. He started crying a lot. He felt warm. Then he felt hot. He spiked a fever. He started shivering and his teeth began to chatter. He was getting chills. His fever was 104.

Turns out he has tested positive for "negative gram infection." The problem is it gets worse before it gets better. Samuel was on the 8th floor (oncology) but now is being transferred to the PICU (pediatric intensive care unit). He needs his blood pressure stabilized.

He is NOT getting chemo right now. The problem? When will he be able to start? He might need to stay in the hospital past Christmas. It's disappointing. On top of which, I'm struggling with anxiety. I hate ICU's. so many bad memories.

So please pray for his body to fight this infection. We are tired and weary but our faithful God is sustain…
Tuesday was a typical day... a day of pure madness :)

Trying to get out the door on time I was up at 5:45 a.m. I had very little sleep that night. It's funny how you can't rush a nursing baby... I can't tell Peter... "Hey, get a move on. Eat faster." That's a good thing about babies is they slow you down. That's the hard thing about babies....they slow you down :)

Samuel had to go to radiology for an ultrasound at 8 a.m. We got there on time. He proceeded to throw up all over the waiting room. I caught some in his bucket but he needed a change of clothes... which I happened to forget on the kitchen counter. I set the bucket down because Peter was crying. Samuel then managed to trip on my purse and fall into his puke bucket. Yes, you can imagine the mess.

I cleaned him up and changed his clothes. We were called back to another waiting area and then finally to the room. He screamed during the ultrasound, of course. I finally distracted him with stickers. Then …
Wow. It's been a while since I've posted. I took Michael to the doctors almost two weeks ago. They put him on oral steroids and antibiotics. It's seemed to help a little bit. Samuel had surgery on December 3rd. It went well and was very smooth. He was then kept inpatient for chemo for a couple days. I was able to take him to clinic this past Friday for the first time. I had Peter with me as well and I think things went rather well all in all.

My sister's birthday was the 7th. She would have been 28. I had a good day. Well, it started off with major tooth pain so I ended up at the dentists and found out I needed a root canal. I was given a prescription for antibiotics and vicatin. I got to have time with my Mom that day as well as time with my dear cousin Sharon. I also had a few friends over that evening. Sometimes it's hard on special anniversary dates to not feel pressure to make it super special and significant somehow.

(BTW- if this isn't making sense it'…
I hate cancer. I really do. That is one thing I can safely say that I truly hate. I hate knowing that it's in my son's body. I hate being helpless to defeat it. I feel crippled and weak. I can't do anything except watch, wait, and pray. Samuel throws up so much.... all the time. It hurts to watch. It sickens one to hear it. How do you function normally around it? It becomes a part of the new normal. I'm sure it would overwhelm people the first time... and maybe subsequent times but when it's your day in/day out reality.... well, you just learn to live with it.

I hate that he has to get shots every night. They burn him. The shot isn't so bad... it's the injection itself... it burns going in.

His eyelashes are almost completely gone. It looks semi-comical to see a random grouping of long eyelashes. Samuel had eyelashes women would weep over. Gorgeous, long black thick eyelashes. They are now almost non-existent. His eyebrows are fading out as well.

My Dad recent…

Slideshow of Peter

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This free slideshow design personalized with Smilebox
Samuel's home. He went to the clinic today and all looks well. We'll all be together for Thanksgiving tomorrow. Mike finished taking Samuel to CHKD... dropped Samuel off at our friends and picked up Michael. Michael has an appt. with the neurologist today.
Peter's been doing great. Growing well. Eating and sleeping well for the most part. Looking forward to enjoying holiday time. It's so fun with small children. I love it!
Hoping to get our Christmas tree this week-end. I've decided to put special ornaments on the tree on my sister's birthday (Dec. 7th). I usually get our tree on her birthday but this way we can enjoy our tree longer.... and it takes the stress off on the 7th.... it allows me to be or do whatever I want that day.
It almost feels like a comedy routine the way the house gets clean and then becomes so dirty so fast. I've organized and cleaned my room multiple times but it always is a process. I know all you moms out there know what I'm talki…
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This is a very special blanket. It was my dad's baby blanket. I love that all my children have been wrapped in their grandpa's blanket.

Waaah.

This was Libby's special Oxford Onesie from a dear friend's mom who was living in England at the time. It's a favorite.
Mommy's Little Pumpkin.
One little, two little, three little turtles.
Ian loves Peter so much.

Sweet Boy.
Libby is in love with her baby brother....she even said that she's glad he's not a girl!
Samuel was supposed to come home today... and of course, he's not. He will (supposedly) come home tomorrow. This might not seem like a big deal but it can be so hard and disappointing when you're counting on something and it doesn't happen... and you repeat that process OVER and OVER again.
Mike was really discouraged. So I packed up the kids and we all went to them. I think it was good for everybody's hearts.
I've had a really hard time watching Samuel deteriorate. I feel like I'm looking at a cancer patient and not my son. His face is bloated. His head is bald. He's losing his eyebrows and eyelashes. It literally sickens me. But then we'll have a moment where he will lean towards me and say, "I love you Mama." And I remember that it is Samuel. A changed Samuel. But still my boy.
Trying to manage the chaos. But I am blessed. I have had a lot of support and help even when Mike has been gone. I feel a lot better than I have been. I'm tired...…
Mini post. Sbux closes in 5 min. No internet at home. Long story short. Doing well. Peter's doing great. Easy baby all in all. Very sweet. Great eater.
Samuels' been sick. His coloring is awful. Throwing up all the time. Supposed to have 5 day stay starting tomorrow at CHKD. Heart is breaking. Hate seeing him this way.
Please be praying for all of us. It is kind of crazy around here :)

Going Home!

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Hey, we're going home today. All of us. Magically we've been able to wean him off his IV,his blood sugars have stabilized. He's had his pictures today. He will get circumcised and then we'll go home. They've already written the discharge orders. I'm so excited. I can't wait to be home and for us to be all together! Happy Day! Thank you Jesus for answering my prayers!

Rollercoaster.

Today was a day of ups and downs. I'm very tired. My pain has significantly increased. I feel irritable, moody, and emotional. I think my hormones are out of whack coupled with having surgery and the effects of anesthesia. Peter is still having blood sugar issues.
The hospital blessed us with a celebration meal at lunch. A delicious cheeseburger and fries and a piece of coconut cake- it was quite good. I was definitely happy that I got to see and hold Peter today. I actually was able to nurse him twice. Once at 5 and then again at 8. I am going to see him in an hour for his next feed. I'm so happy he's learning how to nurse. In addition, his heart murmur has disappeared. Yay!
I just wish Peter was in the room with me. It's really painful and uncomfortable walking all the way to the special care nursery. It's also a reminder of all my past experiences there with Samuel and then with the twins. I want to be thankful and rejoice knowing that this too will pass. This isn…
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Dear Friends and Family,

Well last night they said they would send me home in the morning but after talking a while with the doctor in the a.m. she felt it would be best to go ahead and do a c-section. It was a wait to make sure all the morphine had worn off. They then put the monitors back on. I was contracting every 3 minutes and intensely... yet still no change in my cervix.

So... we went ahead with the section. It was a total success and I felt fine! Praise God!

Peter Joel arrived at 2:41 p.m. today on November 7th. He is 19.8 inches long and 9 lbs, 4 oz. He's absolutely beautiful.

I have yet to hold him because he needed to go to the special care nursery. His blood sugar level is low and he has a heart murmur. I'm not concerned but am excited to be able to hold him soon (I hope).

He has gorgeous dark hair, chubby cheeks, and a beautiful round face. he looks like a doll!

Resting now. Only got 3 hours of sleep last night. Hoping to catch up before I start caring for our new littl…
Once again I find myself trying to sleep in a hospital. Surprise, surprise.

Having intense contractions again starting at 6 last night. I also felt like I was starting to leak fluid.

Went to the hospital to get checked out. Of course they saw my intense contractions but I am only 2-3 cm dilated and 60% effaced. Thankfully they offered me the option of pain management. So now I’m in bed writing. And I’m on morphine. What relief. The pain of these contractions is so real despite their lack of productivity.

I was again in the hospital last week from Monday to Tuesday. I had a good nurse and doctor and they validated the reality of my contractions. They even tried to let me “progress” on my own. I walked, squatted, did knee lifts, etc. to try to stimulate the contractions to become productive for two hours. Nothing.

Here’s the thing they can’t “help me along” by giving me potossin etc. It needs to happen naturally… and they won’t offer me a c-section until I’m 39 weeks. So for now I’m schedu…

The Waiting Game.

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In case you've been wondering what's going on or where I've been I have two words: No Internet. Not having access to internet when you're on "bedrest" really stinks. So, enough said I will try to update you.

Samuel and I are still playing flip-flop hospital visits with Mike. Poor guy.

I'm having a lot of contractions but nothing productive... yet :)

I'm 37 weeks (as of yesterday). It's great to be full-term. Last Monday I had an ultrasound appointment. The technician had a really clear view and "accurate" measurements. It looks like Peter was 8 lbs, 13 oz. So, surprise, surprise... a big baby boy. We'll see how accurate it is when he's born.

I'll be honest... trying to attempt a VBAC doesn't sound like a great option to me if he's over 10 pounds. So, I'm thinking this week or forget it... I'll go c-section. I don't want my uterus to rupture... I don't want a broken pelvic bone. I don't want a baby st…

Blood transfusion.

Okay, long story short. Samuel's back in the hospital. His breathing was rapid and shallow. heart rate was high. Oxygen levels lower than normal. So Mike had to take him to the ER last night. We're waiting for a blood transfusion. It will help him not have to work so hard. He'll be less weak, pale, and tired after the transfusion.

Libby's birthday party is in a couple hours. Aleya and I took Lib and twins to the IHOP. She had a blast. She not only enjoyed her chocolate chip funny face pancake but she was sung too. She was quite aglow.

Well, days don't turn out the way we think they will but we're making the most of it :)

The latest.

So, I ended up back in the hospital on Wednesday. Contractions were coming every 2 minutes. It turns out I was really dehydrated. So after a full IV bag and some pain meds I went home. Not bad :)

Samuel was being released on Wedensday. So it was quite an interesting game of playing discharge. It's amazing how we do this- flip-flop hospital stays.

Samuel went to clinic today. He looks good. He will chemo again next week and need to be admitted for a 2 day stay. Hopefully it won't be longer than that.

I have a feeling Peter will be arriving in the world next week. I will be 36 weeks on Sunday and it should be an all systems go from there.

Samuel has to get shots administered at home to help bring up his ANC count (part of white blood celll count).

Tomorrow is Libby's 6th birthday. She's terribly excited and has already been spoiled with packages and cards. Hard for her to not feel like a princess I imagine.

So much is happening. Our back doors are replaced! They were rotted an…
I'm still feeling yucky and miserable and not myself. I really feel weird most of the time. Today I started getting really dizzy and had spots in front of my eyes. I miss Mike terribly. I hate being so clingy and needy. I don't like feeling this way. Thankfully these are just feelings and they will pass.

Mike had a really good day with Samuel. We're not sure if he'll come home tomorrow as we had originally planned. I hope he is. He's going to need to get a feeding tube put in soon. So sometime soon we'll be back in the OR for him.

Life is overwhelming me. Calling nursing. Physical Therapists. Prosthetics and Orthotics. Chesapeake Pediatrics. Libby's teacher. Medical Supply company. EdMarc. Etc.

The list goes on. My ears are ringing and the sinus pressure makes my head want to explode.

Maybe tomorrow will be better? Here's hoping.

When the tears slide sideways...

I was laying on my bed feeling thoroughly crushed this morning and my tears began to slide sideways. They usually run down my cheeks and chin but today they fell and ran over my nose and my other eyelid and landed in my ear. it reminded me of long ago summers with swimmers ear.

The world feels turned upside down. I know it's not. I see people going on around me as business as usual. It's just for my small personal little world I feel so out of control. I feel broken. Humbled. Semi-shattered.

I was in the hospital on Tuesday with contractions coming every one to two minutes. I didn't think they would stop. But thankfully they did. They gave me this medicine, apparently some type of opiate, and my favorite anti-nauseau med, phengrin, and they slowed. I fell asleep.

I was then transferred to the ante-partum unit for therapeutic rest. I slept well that night but the rest of the time there was pretty miserable. The care was sloppy and inefficient and I won't get into details …
An encouraging poem that was sent to me from a dear friend who is going through much suffering. I found comfort this afternoon from reading it.

The Sands
The Soul for comfort holds herself to be
Inviolate; but like the blowing sands
That sift in shuttered houses, Christ's demands
Intrude and sting, deny her to be free

She twist and turns but finds it vain to flee,
The living Word is in the very air,
She can't escape a wound that's everywhere,
She can but stand OR yield - to ecstasy.

Her Lord is seeking entrance; she must choose.

Being Home.

I've been sick with a chest cold/sinus infection thing but have been using a netti pot, zicam, taking sudafed and mucinex and taking emergen-c and airborne around the clock. I think I'm kicking it before it could get really bad.

The kids have been a little nuts and the first day home was particulary grueling. I hadn't felt that drained in a loooooong time.

We are adjusting better though. I know how to set up the TPN (IV nutrition) and how to do all sorts of new things.

We have been still working on cleaning and organizing the house. Things are happening.

Samuel went to the oncology clinic today and is doing really well. He will go back to the clinic on Tuesday and we will take him off TPN for 3 days to see if it will change how much he throws up/wretches. Next Friday he will be admitted for a five day stay. It's a more "intense" chemo.

Tomorrow, I'm having a celebration of life (baby shower) for Peter. It's at church from 2-4 and I'm excited to celebr…

Home.

Samuel is home. He's playing with Libby in the playroom right now. It's been great having him home but also quite a large adjustment. I think it will take a while to get into the "swing" of things so to speak. He's on 7-8 different medicines and there's a lot to keep up with.

The nurse last night showed us how to set up his TPN. We have to use a needle to withdraw water from a bottle and mix his vitamins and add it to his TPN and mix it. It's kind of fascinating but I must confess I'm nervous using this stuff. I feel like I will be professionally in the medical field before all is said and done.

Samuel is throwing up a lot still. He always wants help, someone to be there and wipe his mouth and hold his head. Which is fine except that it's so regular.

he's going to be receiving outpatient physical therapy at home. He's been in bed for a long time. He's loving moving around though and likes to walk independently. He will fall though if yo…

Better day.

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Its weird but today has been a better day.It's still gray out. Maybe it's because I get to spend time with Samuel. I've been here since noon and then I get to stay the night. Unfortunately it's because Mike is sick. He has a chest cold and sinus issues. He's feeling awful. So that part is not good.

I had a great time being with my Aunt today. I got to talk to Dr. Lowe and he feels that when Samuel can tolerate oral meds for 24 hours he can come home. I'm hoping for Wednesday if he does well.

He's still throwing up but he's been doing better than he had been. He's been super cheerful and playful. He did great with Physical Therapy today. He also walked over to my bed and wanted to play puppy. He was "digging" on the bed for a bone. It was hysterical. A friend is bringing me dinner tonight. It's been a nice day.

Sometimes it's just nice to have a good day. Especially when I've been feeling sour. Okay, well back to playing batman...

Sad.

After getting attached to Sadie we had to say quick good-byes yesterday. She had been going to the bathroom in the house. I think this was from a change of diet. But Christopher didn't feel like she would be a good fit, apparently the previous owners didn't tell us she was slightly schizofrentic(sp?). Libby and I were pretty devastated and had some good, hard cries. She was such a sweet and gentle dog and so quickly added so much joy to our lives. Libby kept saying, "but she was perfect" and "Samuel didn't even get to meet her."

We had gotten news that Samuel would be coming home tomorrow or Tuesday. But now they think he's suffering from morphine withdrawls and are keeping him longer.

Frustrated, tired, weary and over it would describe my general mood today. I wish the sunshine would come back.

I feel like I need to make a t-shirt that says, "Life is good, but sometimes it sucks."
Just so you know the average weight of a 33 week baby (gestationally) is 4.2 pounds. So, gulp, he IS big. If I go full-term I might be skipping all newborn clothes!

Pumpkin or Turkey?

So, we went to the OBGYN yesterday. I asked if they could do an ultrasound because it had been a while. Peter's flipped and is no longer breach! Yay! He's head down and in the "ready" position. He's also 6 pounds already. I'll be 33 weeks on Sunday. So they were a little freaked out at his size because he's a big boy. So they made me do another glucola test even though I passed the other two times with flying colors. They're so funny. I told them I have big boys...

Samuel was 6 lbs, 3 oz. at 30 weeks. Twins were 5 lbs, 3oz, and 4lbs, 7 oz. at 32 weeks. So, of course this guy is a little bit on the bigger side.

So the question is a 6 pound pumpkin (October) or a little butterball turkey (November). We'll see.

Just got great news! Samuel's pubic tube is coming out as I type!

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…