Tysons' 2 week

Believe it or not this sweet little boy will be 2 weeks tomorrow.  We love having him in our family.  Gracie is slowly adjusting and thanks to my lack of sleep for months I don't feel to bad having a newborn.  My body doesn't know what an 8 hour night of sleep would feel like anymore!  And I enjoy having him so much that it's worth it.  He was almost back up to his birth weight at his appt yesterday. 

He weighed 8 lbs 11 oz and was still 22 inches tall.

He has been a hungry little guy.  He screamed like CRAZY when the nurse took him and changed him to take his weight etc.  They asked if he was always like that and I said no.  Then he did the same thing when the Dr took him and she asked the same thing.  He's been more fussy ever since but I think he's just been really gassy the last couple days.  Of course after the Dr handed him back he had a blowout all over my outfit.  There's something about my children at the Dr.  Gracie has wet through all over me at least 4-5 times at clinic and Tyson's getting started early.  And while I went into the bathroom to try to scrub out the mess he lost his cord! 
He looks great!  He went back in the day after we got home from the hospital because his bilirubin had been high but they said he looked so good and his poop was already transitioning to regular breastmilk poops at 3 days so they didn't even poke him again. 

I'll have to post more pictures later but here are a couple.

Coming home from the hospital

Relaxing with Mom the first week home.

Sweet as ever sleeping on sisters quilt

And we completed another phase!!

Let's just say it's a little more difficult to blog these days!  But before I totally miss posting after a day at clinic here's a quick update on Gracie's day in clinic on Monday.   Although I'm not sure I'm qualified to post about it since for the first time since Gracie was diagnosed in April that I haven't been present for a day in clinic or actually any type of treatment including at home doses of chemo and steroids.  We Mother's are a crazy breed...we think we want a break but we really don't.  It was difficult for me to be at home even with a perfect sweet 10 day old baby in my arms.  I finally got a taste of what it feels like for Todd to be at a rotation each time we go in always wondering if she's ok and what's happening. Even though I knew she was in good hands with her Daddy.

Here she is snuggling up for a movie the night before clinic.  Well the good news is she passed counts!!!  YAY she has passed every time this phase!  And her ANC even went up this time which means she should be in good shape to start her next phase (which I'm kind of dreading but will be glad to have over with) on August 30!  The frustrating part of it was that when she was getting her Vincristine (one of the chemos she got Monday) Todd looked down and her dress was all wet...yes... great chemo was leaking out onto her skin.  They said it should be ok but to watch her skin for the next few days to make sure it didnt' change how it looked because sometimes it can cause tissue necrosis (the chemo can kill the skin).  Thank heavens that didnt' happen it still looks good 3 days later.  They also had to deaccess her and reaccess her port to give her the next chemo so it wouldn't leak.  She fell asleep I guess after that while she got her 2nd chemo (methotrexate).  The Dr told Todd she must have iron roots because most children lose their hair by now!  She was born with perfect hair so thankfully she's kept it this long.  We'll see what August 30 and the weeks following bring...we may be enjoying our last 2 weeks of our healthy looking little girl for a few months. 

Clinic Stats

WBC: 4.2

ANC: 1500 (up from 1000)

Hemoglobin: 12.0

Platelets: 446,000

And I'll guess the weights the same 31 lbs...don't have the paperwork for it.

Tyson and I decided to help Gracie out since she gets 2 weeks off of clinic before starting her next phase so he went to the Dr yesterday and I'm going tomorrow.  We want to make sure we still get out fill of hospitals and clinics :)

Tyson's birth

Pictures from the birth of Tyson Todd. Born August 5th at 8:40pm. He was 8 pounds 12 ounces at the time of birth and 22 inches long. Mom and the baby are both doing well.

We passed counts!

Here's our sweet angel after her sedation and spinal tap today.  They had to give her a higher dose again because she always moves around when they start to clean her before the spinal tap.  She passed counts so we are SOO grateful she was able to get all her treatments today and even got her ECHO for her heart before she starts her new medicine the end of the month.  They wanted to do it next appt and I luckily got the nurse to get us an appt today at 1:30 so we just hung out an extra hour and got it done before the baby gets here...hopefully tomorrow!

Clinic Stats

Weight: just under 31 lbs

ANC: 1000

WBC: 3.6

Platelets: 428,000

Hemoglobin: 11.5

Back poke number 8 I think today!

The extra propophol they gave her kept her out a while this time it took her a good half hour to rouse at all.  She was pretty out.  Look how sweet she looks.  BRAVE GIRL!  She did better with getting accessed today, but still doesn't like it.

Here we are right after her ECHO they let me lay next to her while she watched Barney and she was amazing.  She just layed there and barely even moved or fussed the whole 15 min.  Believe it or not we both fit with my big belly now!

Glad the ECHO is done so we don't have to worry about it next time!  Blessings blessings...we passed counts and now only a few more hours and we'll hopefully be headed to the hospital to welcome our baby boy!!  Stay posted for pictures!  Time to attempt a good nights sleep before the big day!

miracles...

Are you in the mood for a miracle? Cause I am! As I have been thinking about the past, present and future starting about 3 months back I was able to see things in a new light! Yes...it was been tough...yes it will be tough...but this Friday (if not sooner) we will be experiencing a MIRACLE!! That's right the birth of a sweet boy straight from the arms of heaven! And guess what else...we are in the middle of witnessing another profound miracle! Can you believe that just 3 months ago, who knows exactly when it started, but we know that at that point sweet Gracie's body was filled with cancerous cells! That within weeks or even one bad infection not properly treated she could have been taken from us...at least from this life (even more miraculous that she will be ours forever!) Now recognizing that we still have 2 years of treatment ahead of us in hopes that she will be cured...the miracle is that she is ALIVE!! She has a remission marrow (last they tested they saw no cancerous cells) and although there may be a few hidden cancerous cells still flowing through her blood we have every reason to believe after we've made it through these two years she won't! She is here to spend every hour of every day with us...she smiles, she laughs, she loves, she hugs, she cries and hurts. 40 years ago there would have been no hope for this...we may have been expecting our precious little boy this week, but she probably wouldn't have made it this far to welcome him with us. Just wanted to take a moment to remind myself how blessed I am despite all the hard and seemingly impossible we will be part of at least 2 miracles this year! How many more can a person expect in one year? Now lets take a look at just how cute little Gracie is before we go crazy with baby pictures...although trust me you'll still see plenty of her in the future!

The wetlands she loves to go feed the ducks at!

Gracie with the ducks!

Chocolate and pajamas! We had our own personal declared pajama day due to extreme exhaustion...yes we both wore pajamas all day! It was grand! And she rarely has eaten sweets in the past few months so how could I refuse her request for chocolate?

I finally braved cutting her bangs again last night...here's the result while she signs her favorite sign..."more"

I believe we were watching Mr Kruegers Christmas...you never know what you'll find on at this house! Hey, it's a church movie right? It was our pre nursery lesson activity!

We love our little Gracie and can't wait to meet our new little guy!

What we've been up to...

So other than clinic what have we been up to?  Well Todd of course has been going to his rotations every day and gets home a little later than we like...but since we usually stay up til midnight with our little bug I guess it's not so late.  Anywhere between 7 and 9:30 usually.  Gracie and I spend the day trying to find things to do...she's so active and with our limits not only of trying to keep her from sickness and infection...but her having to deal with a lousy pregnant Mom it can be a bit of a challenge.  We usually spend several hours a day outside swinging, riding her bike, riding in her little car, playing in our car (that's a huge hit)-she even likes to dance to the music in the car sometimes, running around and playing with rocks and usually trying to touch anything that she shouldn't or running into the street!  We did have some fun swimming this Saturday and got a bunch of cute pictures.  Todd and I even went on one last date before things get to hectic for thinking about that.  Thank you Amy for watching Gracie!  You are so wonderful! When not outside we watch more movies than we'd like to admit...but hey you've got to survive somehow right?  She is so into movies right now and we are grateful that she is old enough  that they hold her attention when we are so worn out at times.  Especially at night now that she's usually up til midnight...but she has been sleeping til about 8:30 or 9 so we'll take what we can get!!

She was already and even packed her bag to go for a drive...where did we drive to?  I can't even remember it was just to keep us sane and get out of the house haha!

All tuckered out...gotta love that chemo.  Poor little sweetie I believe this was at 6:30 pm as I mentioned before we have no schedule at this house anymore and why change it with a newborn coming in 11 days or less?

Todd's mancakes we tried out at Stepping Stone Cafe, they were huge!  Even for a man with his appetite.

Nothing better than coming home from a date to some fun play time with our Gracie.  She loved it even thought the water was FREEZING and her Dad is ruthless with splashing her.

There's the big belly...at my last appt and ultrasound which was last Thursday they thought the baby was about 8 to 8 1/2 lbs.  Yikes...I hope I don't last another 11  days who wants a 9 1/2-10 lb baby?  Otherwise he looked healthy thought so we're grateful.  His predicted due date from size was actually TODAY haha of course on my birthday but it looks like we'll make it through the day and he'll never have to suffer sharing his mother's birthday.  But any time after midnight I'd be thrilled if he decided to make an entrance.  I actually ended up going in for false labor last Tuesday with contractions every 2 minutes ...but of course no luck we are still here enjoying crampy contractions and the fabulous feeling of the end of pregnancy.  Anytime now my boy...anytime!

Painting the sidewalk with water...a favorite chidlhood memory of mind!  Plus mess free!

And lets just hope she loves her little brother as much as baby paraphanelia because it pretty much drives her crazy to see it and not get inside or drag it all over the place!

Sweet girl in her summer dress after a little chocolate on Sunday.  Yes she has enjoyed chocolate lately...but probably not for a few days now since she just had another dose of chemo. 

She's a great little signer!  Sure helps us out at times!

A little side shot of her fabulous hair.  I'm enjoying it this month before it all falls out.  I think she might miss it to because she loves to "whoosh" her hair back and forth and say "whoosh".

  She loves picking flowers and leaves. 

Is there a a more innocent looking face?  This little girl is truly our joy despite all the heartaches and difficulties.  When she is happy she makes us SOO happy.  Lately she's been giving us hugs and likes to hug us one after another or sometimes both at the same time.  She does a fair amount of the ordering around anymore and when it comes to hugs we more than willingly accept her orders!

another treatment down...

Well my birthday wish came true today!  Gracie passed counts...oh and also I didn't go into labor while at clinic:) I guess that's two birthday wishes so it looks like my birthday has been  a success!! 
Today went pretty well with clinic...my very concerned husband decided either he needed to come with me or I should find someone else to go with me in case I went into labor or something crazy with all the false labor I've been having this past week.  Well despite my regular nightly crampiness and my morning wake up call of crampy contractions around 5 or 6 am I did not go into labor...although it was nice to have the help and the company.  I had planned on going alone, but compromised because otherwise he would have come to clinic which would leave me home alone with Gracie til about 10 tonight so he could make up his hours.  So thank you Jodi for saving me again...I think it's only 1 million favors I owe you now!! 

Clinic Stats

WBC: 3.8

Hemoglobin: 11.5

ANC: 1.1

Platelets: 544,000

Weight: 31 lbs 1 oz

Height 2'9.5"

And all her chemistries looked good which means her liver and kidney are doing fine! YAY!

Well getting her port accessed was better this time but certainly not fun she still hates it so bad...but this time I requested another nurse to help hold her down and had them get several dressings ready in advance to speed up the process and we only ended up needing two large dressings instead of about 6.  The childlife specialist came in and brough her a doll to draw on and pretended to "access" the dolls port then let Gracie play with the syringe and pretend to give it medicine, etc.  Yes this is about the only circumstance a pregnant mother would let her 21 month old toddler draw on a doll with permanent markers:) Luckily it ended with only a few marks on her hands on none on our clothing or anything else besides the doll!  Here's a picture of the end result!

Although they took the needle of the access so we could take it home and she can safely play with it. 

We spend a little time trying to chase her around with her chemo but after realizing we weren't as quick as her and a few close calls we headed back to our area and tried to distract her with a movie.  Only after playing for an hour or so while waiting for her blood results.  Here's the sweet angel laying down for a few minutes to enjoy some cheese on her bed.

You'd never know she was accessed and just had her blood draw right underneath that little shirt and blanket.  When I look at this girl all I can think is she is my hero!  She's totally amazing!

Of course we finished up and got in the car for a good zonk out as is now tradition after clinic and she is sleeping soundly in my bed right now!  Yes I think she deserves to sleep in my bed after enduring all she does...poor thing couldn't stand to be put in her crib but I enjoyed a nice snuggle with her and I'm sure I'll rejoin her in another minute!  Hope we pass counts next time as they have dropped each time with the increased dose they give at each visit.  But luckily so far we've been blessed with passing each time.