dear pratt.

dear pratt,

two things that you love: ace. and playing on the floor.

so every afternoon, this is what we do. we combine the two. we play with ace...on the floor. you love it. as you can tell by your face in the picture below.



we love you. love, mom and of course, ace.

pictures from this weekend.

a few pictures from this weekend. let me explain...

here is our little easter bunny in his bunny ears from nana. i think he likes them!



saturday night we ate at jasons in hot springs. this place is a great burger joint if you're near there. it's off highway seven towards arkadelphia. yummy. anyway, pratt NEVER allows anyone to soothe him to sleep. he does not like to be held or rocked or anything like that when he's tired. he would much rather you just lay him down. well, he was exhausted at the restaurant...and could not fall asleep because too much was going on. it's pretty loud in there.

but as you can see, something about his father is calming. i get it, pratt...he's relaxing to me too.

this is me...and my lunch on sunday. yes, onion rings. i think i said to clint, "i'm not really that hungry...i'll just get onion rings." well, turns out...one order is like 20 rings. ed & kays restaurant. the best onion rings EVER. pretty much, the best fried food ever. now, if only they would start making fried oreos....

here is pratt in some of his new clothes. nana bought him the entire gap and carter stores while she and aunt christie were in branson. seriously...she did. and here he is in his new gap khaki pants. he is my child after all because gap clothes fit him PERFECTLY.



and finally, he loves his new rattle. thank you nana and christie for all the goodies!



oh, and madeline's birthday party was on saturday. she had her birthday party at chuck e cheese. well, we aren't scheduled for family pictures until may. by sarah bussey. i CANNOT wait. she's coming to our house...and i'm SOO excited. anyway, someone told us that we should get our family portrait sketched. and so we did...and i couldn't be happier with the end result. seriously...how funny is it that pratt is looking at the exact place we're looking. not at the camera...but at the screen that showed us what our picture would look like. i love it!

a few of my favorite things...

a few things to remember about our growing baby.

one. pratt has started slamming his hands down on the tray of his highchair. or if he's sitting on our tummies, he'll slam his hands down on your chest. it's crazy to see things like this happen. he's learning how to use his arms...and his hands better every single day. he is also getting better at moving things from one hand to the other. oh, and playing peek-a-boo is fun. he's starting realizing that i'm hiding behind the blanket. and i've noticed over the past few days, he will actually look behind the blanket...instead of looking at where i pop my head out.

two. he loves butternut squash, carrots, bananas, sweet potato and green beans. he doesn't care for green peas. and he isn't a big fan of my homeade applesauce. apparently, it's sour. this breaks my heart. because i LOVE making his food. oh well...no applesauce for now. the organic, gerber applesauce rocks his world. i'll have to see if maybe they're adding sugar or some other type of sweetner. my apples weren't sour when i was cutting them up. who knows. i'll try to wait until he's older and give him apple slices. surely he'll like those.

three. in the mornings, he refuses to eat if his dad is in the living room and not sitting beside him at the breakfast table.

four. he grabs anything and everything near him. and if he can get a good grasp on it, he'll put it in his mouth. oh, and he likes to hold two items. one in each hand. and he'll just turn his head back and forth...looking at both hands. like he's thinking, "which one of you is gonna go first?" ;)

five. he must wear footed pjs to bed. otherwise, his feet get out of the covers and are like ice cubes the next morning.

six. he has started staying up nearly 2 hours after he initially wakes in the morning. this is new for us. and has me in a complete panic. i was good with our schedule...and now it's being tweaked. we'll get back on soon. it looks something like this, wake at 7, back down at 9. sleep until 11. up until 1. back down around 3. i've been trying to keep him up til 330. so then he'll nap from 330 to 430. eat dinner around 515. bath at 6. bottle at 7. down by 715 or 730. then we start all over again.

seven. he totally knows when you're taking a picture of him. or video taping him. and he will look directly at the camera and smile. or just stare. and as soon as i sit him in his highchair for breakfast or for dinner, he starts to bang the tray. and laugh. and drool. i'm not making that up. he seems to drool more when he's hungry. oh, pavlov...you really were a genius.

eight. he love ace. and if ace gets close enough, he will reach out and pull on his hair. ace just sits there. nervous as a two-tailed cat in a room full of rocking chairs. he won't move. he just sits there until you say "good boy, ace. let's get a treat." he really is the BEST dog ever. yoda, on the other hand...a COMPLETELY different story.

he really changes every day. it's really, really great.

oh, and here is pratt on the computer. just banging/typing away. he is for sure a boy after his mother's heart. maybe he'll be the next ernest hemingway. minus the gut-wrenching depression...oh wait...i guess that wouldn't leave much of any story...just kidding, uncle andy. just kidding...

dear pratt.

dear pratt,

i promised when i first got pregnant, that i wouldn't ever be the mother who became verbal about how i wanted you to be when you grew up. i promised i wouldn't tell you where to go to college...or what career you should choose. i promised i would let you do those things.

guidance, yes...i will give. and i'll even give you my opinion. but you won't have to use it. and you won't have to feel like i'll be disappointed if you don't take my advice.

there's just one thing...well, probably more than one. but this morning, i thought of just one thing i'll ask.

please read the newspaper. and watch the news on tv. just don't let the internet be the only source of news information you get. because it's watered down. and not the complete story. and it's the easy way out. it's the "new" thing. and i hate "new" things.

there is something so refreshing, so clean...so awesome about pulling a newspaper out of a yellow bag. opening it up. unfolding it from its trifold. for the FIRST time. i love it.

when i was in college, i worked in the science building. i would bring the newspaper to work. leave it on my desk. and dr. knight would get it, open it...and shuffle all the pages together. get the sections out of their alphabetical order. i would go nuts. and he would step back and laugh. one day you'll appreciate the order of the newspaper. and much like me and your dad...you'll try to keep it in it's original order. i mean, you don't really have a choice. your dad is the most ocd person i've ever met.

so, sit down at the breakfast table. get a cup of coffee. or if you're under fifteen, how about orange juice or chocolate milk. and a muffin. or a poptart. those are always good too. and don't use the excuse, "i just don't have time." yes, you do. make time.

sit down and read. every inch of it. even the funny pages. you can even read those first...

i love you. and i can't wait to see you love to read as much as i love to read. and that's all i'll ask of you...

love you.

prayers needed.

i know that many people read this blog. somedays there have been as many as 300 visits. from camden to germany.

so for those that found us today...please stay with me for a minute. i just read a "zoe update". i'm going to cut and paste a part of what erin (zoe's mom) wrote. to catch some of you up...zoe is a 4 year old little girl. diagnosed with a neuroblastoma about a month ago. she is currently undergoing treatment at arkansas children's hospital. she has just endured round one of chemo.

I recall a night when Zoe was just a few weeks old...just after I had nursed I held her for a few minutes before laying her down to bed. I began to cry, a deep cry from the depth of my soul. I just felt that I loved her to the point that it hurt. I had never felt such emotion. Through the last few weeks I have tried to remain positive and have suppressed so much emotion. After the events of this week, I broke tonight. I felt that same hurt as I stroked her hair. Her hair is beginning to come out...just tonight this has begun. I know this is the least of our worries but to me is just one more thing that represents that beast.

She is having a nightmare now and I will close.

as i type this...my heart breaks all over again. i don't even have the words. i cannot find them.

i just ask you as a friend of the braden family...to please pray for erin and zoe. and for ben, zoe's dad. and the rest of their wonderful family.

they need pray now more than ever.

thank you all. we love you all.

dear pratt.

dear pratt,

i don't know what i did before you came. i'm not sure what was important in my life. or what i spent my days doing.

i only know that from now on...you and your dad are the reasons i get up in the morning. you are the reason he works as hard as he does.

tonight, we had dinner with sugar, tyler, cookie and poptart. poptart claims he will never spank you. he says that you'll never do anything to warrant it. i'm not sure about all that. i mean, i think you will be a sweet little boy...but i'm pretty sure at some point...you'll warrant some type of discipline. even your father was spanked once. ask him about it. he remembers it well.

anyway...all that to say that when i put you to bed tonight (at 915 pm...2.5 hours after your normal bedtime), you didn't even whimper. no sound. nothing. you went right to sleep. that isn't normal. i don't know why you're such a good kid...i really don't. i guess you got all your dad's genes.

we love you. and we cannot imagine our life without you. as your dad said tonight when we pulled into the garage, "it doesn't get much better than this."

i couldn't agree more...

superman. banana.

(sugar and dannis, the title is for you two :)

yesterday i took a trip to whole foods. cookie was here and so she stayed with pratt. i LOVE LOVE LOVE whole foods! as soon as i walk in...i feel at peace. like, i want to buy everything in there. because it all seems so healthy. and so fresh.

i have been trying to use all organic fruits and vegetables for pratt. i found great apples yesterday. and we stocked up on organic, old fashioned rolled oats and bananas. i have a recipe for baby oatmeal. i think he'll love it.

i made some applesauce yesterday in my beaba cooker. laura...i take back anything negative i said about the price of it! i know it was expensive...but it was super, super easy to steam the apples in it...then turn around and puree them. and the color of the applesauce is beautiful. and it tastes really, really good.

this morning we tried bananas and rice cereal mixed with formula. he loved it! our pediatrician gave us a food chart at 4 months. it said that between 6 and 8 months, you can do cereal twice a day, and two foods. i've decided to do breakfast and dinner. i'm going to try to do a fruit in the morning and a vegetable at night. in the morning, i am using rice cereal with a tad bit of fruit...and at night, vegetable only.

clint works at a kids clinic on fridays and doesn't have to leave for work until 830. so this morning, he was able to eat breakfast with us at 7. he had to come and sit at the breakfast table with us...because if he is in the room...pratt will stare at him and smile until clint comes and sits by him. it's really sweet.

and then while i cleaned up the kitchen...this is what he and pratt did....(it's the very lonely firefly. pratt's favorite because of the blinking lights at the end). also, that is clint's baby blanket...that has now been given to pratt. thank you greatma...as you can tell...clint is having a little bit of trouble letting go :)



have wonderful weekends.

my faves.

two of my new favorite pictures of our little boy.

i love his smile in the first one.

and how serious he is in the second.

heaven.

ps. vernon, if you're reading this...these pjs are for you. dinosaurs and all!

struggling.

i'm having a hard time making sense of some things.

i've recently seen the "praying for stellan" icon. and i sat down last night and read through it. i can't begin to express what's going on with this little boy. i just ask that you pray for him. and as my friend bethany once said, "God knows his needs."

zoe has been sick. the round of chemo was hard on her little body and she's currently at ach. from what i understand the chemo did its job...and so now her counts are low...and her body is struggling with a fever of 104.

i've done something i never thought i would do.

i'm ashamed to write this...but feel i need some accountability.

i have become upset with God.

i have questioned what He's doing. with zoe. and stellan. and all the other sick babies out there. i know that this is a time when i should be strong in my faith. and be solid. and secure. but more than ever...i'm upset. i'm lost. and i don't understand the point in all this.

as my mother said yesterday on the phone...i would trade places with these kids in a heartbeat. no questions asked.

i'm angry. i'm upset. i'm broken.

i have had such an easy life. honestly, i know that. and i know that some would say that it's been too easy. maybe so. maybe i never fully appreciated everything i've been given. that's possible. but more than ever, i'm starting to understand why some people have just walked away. lost faith when they needed faith more than ever before.

and i don't want to be this way. i don't want to do this.

i'm terrified. i'm upset with myself. and i don't know what to do.

i have had a few times in my life when i've questioned God. when i've sat down and really screamed out to Him. when i've begged for him to change whatever has been going on with my life. but i never stopped believing.

i need to go back and read the shack. i know, and i will.

i'm just asking that you keep me in your thoughts and prayers. i know that you have a million other things to think about...and things much more important...but i just ask those of you who understand this...who know what i'm feeling...to say a quick prayer for me.

i'm so weak. i feel so weak. and i hate, more than anything...feeling weak.

i know that i'll be alright. and i know that i'll get back on track. i realize that questioning everything is normal. and from an early age, my dad has said over and over again that to defend what you believe, you must know a little about the other side. i couldn't agree more, dad.

but i'm done now. i'm done understanding the other side. i want to feel at peace. i need peace.

i need this all to come to a screeching halt...here's to that halt.

baby steps.

i love lists. i love lists that allow me to check off certain items. once i've done them. there is nothing greater than drawing a single line through what's written there. like, "done. check. finished."

i made a weekday list about a month after i had pratt. it hangs on my refrigerator. it says, "monday: clean stairs. de-clutter kitchen table. clint's scrubs. upstairs floors. bathrooms." and of course, goes monday through friday. no chores on saturday or sunday. those are fun days. rest days. they don't count.

"de-clutter kitchen table" is my favorite. i've come to realize that if your kitchen table is clean, the entire house will look clean.

that kind of stuff. just enough to remind me what to do. just enough to nudge me to do what's on the list.

i've seen people look at it and chuckle. that's fine with me. chuckle all you want. i needed it. i needed something to remind me what i'm supposed every day because there was a time when i wasn't thinking clearly. my head wasn't on straight...and i didn't know my up from my down.

clint was always so good with my list. he never made fun of it. he never joked about how i had all the time in the world being home with no job. in fact, he would always.always.always make comments about how he could do the laundry. and he could help me clean. and that a clean house wasn't necessary.

it was something i put on myself. something i thought i should be able to attain. i mean, look at bree vandekamp/hodge. she has two kids...a spotless home...and is always cooking breads or desserts for her neighbors. and then she puts the food in those great little baskets. puts on her pearls...and delivers it. ah, to be bree.

i talked to one of my best friends last nights. and we were talking about being good parents. doing a good job for our kids. and she said something like, "why am i the only one having trouble with this? all the other moms i know are able to do this...and do it well. why is it so hard for me?"

i wanted to crawl through the phone and just sit with her and hug her. on the couch. maybe have some ice cream and brownies near by. because i get this. i totally understand that.

i gave her my best answer. my best guess.

i think we eventually get used to the chaos. we figure out a way to swim. or maybe we just dog paddle. we survive because we have to. and we survive because we have friends who have been there. who understand.

i don't use my list anymore. but i haven't yet taken it off the door of the fridge. it's still there. hanging proudly with a razorback magnet and another that says, "eating fat free is like kissing your brother." perfect, really.

i'll leave it there for a while. and when i'm done...when i know that my life really has come full circle...when i'm confident that i don't need it. that my head is on straight. that i know my up from my down...then i'll remove it. i'll put it in my box.

and years from now, i'll look back and realize how far i've come. what a great day that will be.

water, please!

here is a video from last night.

it's proof of just how much pratt loves drinking from a glass. he's extra fussy here because we helped at dad's office yesterday afternoon. this meant that little pratt didn't nap at all from 10 am til his bedtime. if there is anything remotely interesting going on...he refuses to nap. apparently a dental office is the equivalent of a circus to him. who knows...

he was super, super overtired. this was taken around 730 last night. nothing was appeasing him.

well, nothing except for ice water in a glass...

and sorry it's so dark. all i had nearby was my camera. not the video camera. but you get the picture...

dear pratt.

dear pratt,

oh how you continue to grow! here are a few things in honor of your (belated) six month birthday...

you love to ride in the stroller. sitting up, of course. laying down is apparently for the birds. you want to be sitting as straight as you can. leaning forward is best, actually.

applesauce is your favorite food yet. i almost can't get it in your mouth fast enough. you sit up so well in your highchair. we hardly ever use the bumbo seat anymore.

you grab at anything and everything within your reach. hair. earrings. necklaces. scarves. you name it...you love it. and want it in your mouth.

you have learned to scooch. half scoot, half crawl. i guess it should be called a croot. but i like scooch. i have it on video...but we live in the country and our signal isn't good...so it's hard to upload videos out here :) maybe next time i go "into town" to your dad's office, i'll upload it.

you are such a happy baby. even when you're tired. and exhausted...you still smile for people. it melts my heart.

you love your daddy the most. every single time you see him, you begin to squirm with delight. it's so sweet. and i love that you love him so much. it reminds me of why i love him so much too.

you love ice cold water. from my glass. you'll drink it by a straw. (like, me dropping it in your mouth from a straw) but you most like to put your mouth on the glass...then drink. big gulps. welp, see you later. just kidding....that's a line from a great movie. we'll review that later :)

anyway...here are some pictures from tonight. we love you pumpkin.

stop this train.

as a brilliant singer/songwriter once said...

stop this train
i wanna get off
and go home again;
i can't take the speed it's moving in
i know i can't
but honestly...won't someone stop this train?





i don't know how. but somehow my child is already six months old.

and he's sitting up really well in his highchair. and eating organic apples...big, manly bites...as fast as he can swallow.

and he's holding his own sippy cup.

tears. this is all happening way.too.fast.

way too fast.

the doctors visit.

okay, so we went to the pediatrician today. i love him. i really, really love him. he's so calm. and patient. never interupts. always listens to me rant on and on and on. and never, ever interupts. i asked him today if he would please promise to stay in business until pratt was 18. he laughed. i'm afraid of what that means.

anyway, he looked pratt over and basically said that we did the right thing by taking him to children's. he praised the doctors there. and said he had to agree with them. it looked like some type of viral rash to him as well. lonna, my brilliant doctor friend said, "rashes are hard, han." and dr. stanford actually said, "rashes are pretty difficult, hannah." they must teach them to say that in medical school.

i gave him the full story. how it looked just like chicken pox when it came up...and how it's now more of a rash. we went through the whole, "any fever? any change in eating habits? bowel habits?, etc" routine. nothing. no change. pratt has never acted like he's in pain.

he said that he probably picked up some virus from someone else. and it manifested itself as a rash in pratt. he asked to hold him. and while he held him, he put his hand on my shoulder. i think he knew that i was seriously on the brink of crowning myself "worst mother of the year". i mean, rsv at 4 months...and now this. this twilight zone rash at 6 months.

he basically patted my shoulder and told me that i was a good mom. and that i was doing things remarkably well. that pratt was a healthy baby. a happy baby. and that it had nothing to do with me or my "motherly" skills...or lack thereof.

i almost started crying. i literally had to bite the inside of my lip to keep from it. funny how i will totally just break down with someone i barely know. i've always been this way. always.

he said that it is healing. and that he sees lots of bug bites on kids that start out as red bumps, then they go flat. then flat purple marks. then brown. then they fade. he thinks that's where this is headed. it's flat now...but just looks painful. he promised that it would not scar. and that if it wasn't completely clear in 2 weeks, he'd refer us to a dermatologist.

as we were leaving, dr. stanford was standing at the door. he waved at pratt and said, "goodbye pratt!" and....well, pratt stinkin' waved. well, sort of. he picked up his arm and sort of did an arm shake at him. dr. stanford gasped and said, "oh my gosh! he totally waved!" i laughed and told him that i was glad he saw it. that pratt actually did it the other night at his dad. but i knew that no one would ever believe us! we both got a good laugh out of it!

here are a few pictures from wednesday. you can see the rash on his face and legs.

his legs and arms look much, much better today. no more raised spots. just discoloration.

oh, and here is what i discovered our little monkey can do while changing his diaper the other day...

here we are getting ready for our appt today. and aunt betty, he loves his elephant shirt! the pants are still a little long! but they will fit soon enough! we love the outfit!





thank you to each of you that has left sweet comments about pratt. i feel better already. it's so reassuring to hear someone tell you that he will be fine. thanks for understanding. and not judging me. and not calling me crazy. it's nice that so many of you understand exactly how i feel.

love to you all. have great weekends!

oh, and he's 16 pounds, 12 ounces. don't know how long. we will go back for his 6 month shots in about 2 weeks. as long as everything is clear with his skin.

God's graffiti.

when i begin to feel sorry for myself, i'm always reminded by the Man upstairs that my life is so incredibly easy. so a special thanks for using sugar to call me about zoe's new pictures.

zoe's grandfather is staying in a camper near the arkansas river. this bridge is nearby. to the many of you reading this and living in little rock...you recognize this.



well, once mr. goss looked closely, he saw this:

that is "zoe" written up at the very top. in white.

and some people say there is no God...what.ev.

i'm pretty sure that He sent an angel up there to leave zoe's name. graffiti and all.

worry.

i've always been a worrier. always. as long as i can remember. if i can't think of anything to worry about, i'll make something up. invent it. pull it from thin air. and then begin to worry.

it keeps me up at night. it gives me headaches during the day.

this rash. i'm completely worried about it. i know, i know...it's just a rash, you say. but no, it's not "just a rash" to me. it's a weird, red rash that won't go away. it's been a week...and in hannah-land, a week is like a year to normal people.

i called a pediatric dermatology clinic today. at children's hospital. and do you know when the next available appointment is? guess...well, most likely..you were wrong.

AUGUST!

august, people. august!!!! that is five months away! FIVE!!!!

i started crying on the phone with the guy that makes appointments. he said august something..i can't remember the exact date because i was stuck on the first part. and i just started crying. big crying. "ugly crying" as oprah calls it. i tried to hide it in my voice, but it was impossible. he asked me if i needed medical assistance. i said yes, i did. and my child did too. because he had a "freakin red (and i think i used a bad word here that starts with an "a") rash that wouldn't go away and apparently so does every other child in little rock and the surrounding area!"

before he said anything in response to my craziness, i began sobbing and apologized for my behavior. he said he understood...his exact words were, "i understand ms. hannah. it's hard being a mother."

i wanted to crawl through the phone. give him a hug. ask him to come over and maybe watch lifetime with me this afternoon. how did he know exactly how i felt? how did he know EXACTLY what to say?

i have to say that i know that this isn't life threatening. i know, i know. but it's dreadful. and it's not getting any better. and the not knowing is killing me. i have a doctor's appt with the pediatrician tomorrow. he the sweetest man in the world. and i hope and pray that he has seen this before and he will know just what it is. and even if there is nothing i can do about it...except wait...at least i'll know what it is. at least, i can stop googling things like, "rash on 6 month old" and "can a 6 month old die from rash". yes, i'm horrible. and neurotic. but i really hate not knowing. how do FOUR doctors at children's hospital not know what something is? it's 2009. i've seen those dermatology books. yes, they're thick...but come on. isn't there some sort of flow chart for rashes?

and on top of all this, there is little pratt. staring away at me. like yesterday in the grocery store. i was so worried about him. about if i was spreading this unknown twilight zone rash to all of kroger. and my mind is in a million different places. and i happen to look down at him in his carseat. and he just looks up at me and beams. ear to ear.

and i just stopped.

it hit me that every.single.thing i do affects him in some way. good or bad. it does. and here i am, all self absorbed in my craziness and there he is...just waiting on me to look at him. let him know that he's okay because i'm okay.

he reads me so well. i can only remember a few times in my childhood when i knew something was wrong. wrong with my parents. looking back on this, i find that remarkable. they so seldomly let on that they were struggling. be it with finances or their relationship or whatever. i was with my mom every single day before i went to school. how did she keep this from me?

it's no secret that i've struggled with sadness since high school. it's been worse at times. and better at times. right now, things are good. i mean, there are bad days that i can't always shake...but overall, things are really good.

but i worry about how i'm affecting him. how he's reading me. what he's thinking. if he knows that we really are great. that even when his mom has a bad day, he's going to be fine. he'll be fed, and dressed, and played with. read to. everything will be exactly the same for him.

i'm sorry for this post. or rant. or whatever you want to call it. it's only 1155, and it's not been a very good day thus far.

i'll make my dad proud and say that i know that this isn't really a big deal in the grand scheme of things. there are babies out there with much bigger problems than a rash. i know. i know. and so i'll stop complaining. and remember that we have our health. and that we really are okay.

well, pratt is. i'm not. i'm crazy. but i've never, ever claimed to be normal. and i'm pretty sure that is my dad's fault. because his side of the family is the crazy side.

hey...i'm just saying...if the shoe fits, right?

all before seven am.

so...someone put crack in my food last night. that's the only thing i can come up with.

i got up at 430 this morning. pratt was stirring in his bed. he woke me. i could hear him giggling to himself and that is enough to get me up. i hate hearing him playing in there all alone. so i went in and found him pushing up on his arms to look at me. then he smiled.

so i fed him. i could tell he was hungry. i knew it because he's usually asleep at 430...and because when he gets hungry, he doesn't really fuss anymore. now, it's that he puts his two middle fingers in his mouth. and he was doing that. and drooling everywhere. which means he's hungry. three months ago, i would have never dreamed that i'd know these things. funny what a little time does for you.

i put him back down and he fell fast asleep. so i got up, put my workout clothes on and visited with tony horton. for those of you who don't know who this is...it's the p90x guy. he's awesome. i mean, he says really dorky things at times...but his "extreme home fitness" program kicks my butt. today was shoulders and arms. one of my faves.

after about an hour and ten minutes of working out, i cleaned out our refrigerator. then cleaned out the tubs under our sink. threw away old stuff, and just stood everything upright again.

i made clint fresh squeezed orange juice. and not just any orange juice. blood orange...orange juice. if you haven't had blood oranges, you should try them. they are great.

let's see, i made clint lunch. put up the clean dishes from the dishwasher. added fresh water to my flowers. and took out the trash.

all before seven am. who knows...i totally want to go get in the bed right now. and this is my one productive day of the week. that's pretty much all i have. one out of seven. not bad.

a few things to document:

yesterday, pratt tried to crawl. he did what i would call a scooch. you know, where he pulls his knees in to his chest...but can't figure out what to do with his arms. almost like he has so much leg strength, but no arm strength. it was so cute. at one point, he started going backwards. i'll have to get a video of this. it's really funny!

last night i was putting him to bed. we were standing at the bottom of the stairs, and turned to say goodnight to daddy. clint waved to him and said, "goodnight pratt." i started waving back at clint. a pretty exaggerated wave. you know, where you open and close your full hand. well, he's not good with deliberate movements, but we're pretty sure he pulled his left arm over and tried to wave with it. i screamed and started running around the room! i probably scared him so bad, he'll never do it again...

one more thing. he loves when you get right down by him. turn your head away from him, then turn back and say, "boo!". but not too loud. he will just fall out laughing. so sweet!

have wonderful hump days!

two little zoe updates.

And we're off!

Posted 1 hour ago

Yesterday started at 4:30 a.m. when we awoke in preparation for our trip to Little Rock. We had spent the weekend in Camden visiting with family. At 8:00 a.m., we met with the oncologist. I have to correct a previous post. This is not "salvage" treatment but Stage IV treatment in a Stage 3 case. He says that Stage 3 is quite rare as neuroblastoma more often presents at Stage IV...a silent monster!! She had the port accessed mid-morning. Zoe had been most apprehensive about that. She did great!! She did have heavy breathing until she realized they had already accessed and she said,"that's it?!?!" From there we went to audiology to have a baseline hearing test. One of the chemo agents used in treatments 3 and 5 can be toxic to the ear leading to the need for hearing aids. Daddy had to go set up the camper mid-day and Zoe and I tucked away at the gift shop for a quick refreshment. We then were officially admitted. Before the nurses had full orders, she was IV pole free and we took advantage of the beautiful day. She took a walk outside with Mary, she played hide-and-seek with me, she played "soccer" with a basketball... Around 6:00 p.m., she was hooked up to the cyclophosphamide followed by topotecan. This infused over an hour and she did great. She slept well through the night and remains asleep at this point. She will be on continuous Zofran(a medicine for nausea/vomitting) and IV fluids today(cyclophosphamide offends the bladder) and therefore accompanied by the IV pole at all times. I have to admit that she has mastered walking with the pole and toting the multiple tubes from her chest. Not much going to slow her down. I am trying to prepare her for those days that will be "crummy" but we try to focus more on feeling good now and having "crazy girl time."

So, we were told yesterday that the stem cells will likely be harvested within the next few weeks. Our insurance called shortly thereafter and said they would not cover this procedure at ACH and we would have to go to St. Jude. As you may know, we are huge advocates for St. Jude as we have dear friends who have been through this very experience there. However, we have developed relationships here and would like to stay. The case manager is working on a waiver and the procedure may be postponed to between later treatments. The delay will not affect her outcome and therefore we are pushing for the waiver. Between treatments 5 and 6 she will be reevaluated for surgery. After chemotherapy she will have the stem cell transplant with 2-4 weeks of isolation. This will be followed by 6 months of Accutane.

One day of treatment is behind us with many more ahead. Please continue to pray with us for healing and cure for Miss Zoe.

Be well.

Erin

and the second, most recent post.

Twedt Catering :)

Posted 17 minutes ago

Our dear friends, more like family, Mary Cantrell and Bev Twedt have offerred to coordinate meals. We have so very many people asking what they can do to help us. Mary thought that providing meals would be a great way to provide. She and Bev have planned to cover dinner this week. Anyone who would like to bring a meal can call or email either Mary or Bev and they will put you on the schedule. If all goes as well as possible, we will be in Little Rock the weeks of April 6, April 27, May 18, June 8, and June 29. We will also have times in between for stem cell, surgery, and fever.

I should let you know that we have beef and shrimp allergies(unfortunately just me.) I have had these long enough though that if your specialty is beef or shrimp I can make do. :)Ben and Zoe both love them!

Thank you all for everything!!!!!

if any of you want to take food to them, let me know. i actually deleted the emails and phone numbers erin left. i don't want to post that stuff without their permission. however, if you are interested, email me, and i'll send you the phone numbers/emails.

love to all of you. prayers for miss zoe. and all the little ones out there battling illnesses.

can't sleep.

i can't sleep. which is strange. because there aren't too many things that i love more than sleeping. eating, is one of them. and manicures/pedicures. and target. and of course my family. but you know what i mean. at any time of the day, i'm willing to nap. but not on the couch or in a chair. always on my bed. not in it. on it. you only get in a bed at night.

anyway, i can't sleep.

clint is asleep. and has been since around 830. he's sick again. a cold. kool smiles will do that to you. being around 50 plus kids on fridays will make you sick on mondays. yuck.

i have a lot on my mind. let's see...

zoe. and her family. i can't quit thinking about them. and how unfair this all seems. i'm not good with illness. i'm not good with sick kids. i used to think i was. but i'm not. i see it and just collapse. i'm such a pansy. i keep thinking about her. wondering how she feels. wondering if she understands at all what she's fighting. wondering if she's as strong as i pray that she is.

pratt and his rash. i hate it. i hate that i know it's itching the fire out him. and i can't do anything about it. i wish that tomorrow morning when i get him out of his bed, it would be completely gone. i shouldn't have...but i googled "rashes-infants" tonight. and i've decided that it's rubella aka "german measles". i mean, i'm sure that if this were the case, the four doctors would have caught it...but i've pretty much convinced myself that it's rubella. i mean, after all...i did have a full year of medical school. that should account for something, right?

clint. and the office. he's now open monday through thursday. and will only work at kool smiles on friday. he's worried about how this will affect everything. he worries about providing for us. he probably always will. i wish that he was just a little more like me. not too much...because then we'd be living in a box down by the river. i wish i could take away all his worry.

the fifty things on my never-ending to do list. oh to scratch those off would feel sooo stinkin' good.

how fast pratt is growing. how when you look at him on the monitor, he looks like a toddler. not a baby. he's so long. why is he long? where did that come from? and why is he already in a size three diaper? and why does he roll over everytime i change his diaper? seriously. it's every.single.time. and how when you give him a bath now, he kicks the water constantly. how he loses his breath laughing in the backseat. in his carseat. alone. it makes you want to pull over and hop back there with him. just so he isn't laughing alone. how when you put him in his bumbo, he constantly leans over to whatever is next to him and picks it up.

how he loves his dad so much it hurts. as soon as he hears his voice, he begins to look around to try to find where clint is. i think it's clint's smile. and how gentle he is. calm. it's pretty relaxing. because i, on the other hand, well...i'm like a tornado. poor kid...

how i cannot for the life of me come up with a different lyric for one of my favorite jingles. it goes like this, "i had a little monkey. took him to the country. fed him on gingerbread. along came a choo-choo. knocked him coo-coo. now my monkey's dead." i just can't sing that last line to pratt. i have recently started singing, "now my monkey's in the bed"..but there is too much there. too many words. but i cannot come up with anything else that rhymes. i'm that bad with music. it's like during american idol, i constantly turn to clint and say, "is she good? does she sound good?"

how if i'm going to get in a swimsuit this summer i need to stop eating easter candy. and i need to stop buying reese peanut butter eggs. but i can't. because they are so good. so fresh. the chocolate has melted all over your hands before you can eat the entire egg.

i should just go to bed. so that i can get up in the morning before everyone else and do p90x.

okay, goodnight. sleep tight.

size three diapers...what!?

i just want to document that i've switched to size three diapers.

i realized today that the threes fit much better than the twos. it happened because i dislike huggies. i don't know why. they don't seem as soft as pampers for some reason. and we had size two huggies...and i was sick of them. so i tried out the threes from pampers and they actually fit him much better.

this is so upsetting to me. why oh why is he getting so big?

also, the rash seems to be clearing up. it's a little lighter today. and of course, in the big scheme of things, as long as he is healthy...we are lucky. and doing great :)

in other news...much more important news...zoe starts treatment today. here is her latest update. please keep her in your prayers.

Bye-Bye Buddy Boy(the tumor)
Posted 2 days ago

Well...it was brought to my attention tonight by Buddy Boy's "mother" that I have not shared the story of the naming of the tumor. I believe I typed this out at one time but that post was erased with my tapping of a wrong key. So the story goes...

Zoe and I always have our serious talks at the swing set in the backyard. It has been our meeting place after school to discuss the days events. The official diagnosis of neuroblastoma was made on March 3. I had spoken to the social worker that day who encouraged me to in time identify the "thing" in Zoe's belly as cancer. I thought that to be a discussion best had with the social worker present. However, that evening as we were at the swing set the opportunity came about to discuss her diagnosis. I began by talking about our friend, Brady, who HAD neuroblastoma and is now enjoying himself in school...disease free! I then explained that she, too, had neuroblastoma. She apparently knew that this meant "cancer" without me saying the actual word. Kiddos are aware of so much more than for what we give them credit! She said to me, "mama, I DO NOT HAVE CANCER!" I tried to explain that yes, in fact she does, but we are going to fight it with medicine. She emphatically denied cancer. So, I said to her, "think of the thing you like least in this world and that is what we will call the tumor." She quickly responded with "Buddy Boy." Buddy Boy is her Aunt Samantha's dog. He is a rat terrier(I think that is correct.) He is very active and likes to jump on Zoe. She is a spaz when he is around. Just terrified! And that is the story of the naming of the tumor.

I have not tried any further to convince her that the tumor is cancer. I feel like that is the energy that God has given her to conquer this battle. It is GOOD energy!!

her grandmother left a message this morning that said they were at the hospital. and that zoe's main concern was that the gift shop wasn't open. :) i love kids. they really are the best.

and here is zoe with her new haircut. she cut off quite a bit of hair for locks of love. isn't her new haircut sooo cute!



pray for zoe...and her entire family.

ach

as in arkansas children's hospital.

that is where clint, hannah and pratt spent a good three hours today.

everything is fine...don't worry. pratt just has a little "viral rash". who knows. i don't know...i can't even begin to explain it. i mean, that's all we know. ("little" probably isn't the word. it's on his face, arms, legs, neck, scalp, butt, and well...his bottom. you know, "butt" is back part, "bottom" is front part :)

i have full confidence in those doctors there...and after one resident and three attending physicians looked at us...three hours later...the reponse was, "uh, well...we just don't really know."

it's either a viral rash. or a contact rash. i think that's what he said. i'm overwhelmed by medical jargon when it's my child they're speaking of.

pratt's weekend with nana was cut short. we're sorry nana. we plan on another fun weekend soon, i promise.

i'll post pictures soon of our spotted little leopard. he looks terrible. but actually isn't showing any signs of being sick. other than the bright red rash. no fever. no coughing. no nothing. except that rash. who knows.

today, when they put that ankle bracelet on pratt, i almost lost it. i couldn't help but remember that horrible, awful ankle bracelet that was on his little foot for those long days in the nicu. i seriously wanted to rip it off today and kindly explain to the nurse why i couldn't handle it.

a big shout out to dr. nelson :) and all the other doctors there. they are all so, so incredibly nice. and loving. what a great place to work.

please keep our pumpkin in your prayers. it's not easy looking at a sick child. as i've said before, i would take any illness to keep him from ever having to suffer through anything.

enjoy your sundays.

welcome to the country, y'all. (thanks laura)

the other night i woke up after hearing something. i thought it sounded like something outside, so i peaked out one of the front bedroom windows to find five deer resting in our front yard.

it was so pretty and peaceful. they were just laying there...all cuddled up in the grass. the front of our yard is covered in weeds...then on up, closer to the house, there is grass. they were in the grass. clint thought it was strange that they weren't in a more covered area. who knows. i think they can sense that i don't kill animals...so it's safe here :)

this morning at 9:15, ace was barking at the front door. i got up to see what it was because he's been barking at this small calico cat that has been hanging around. i love kittens. so i shushed him...and ran to the front.

here is what i saw. the same five, clint thinks. eating away.

they are such pretty animals. i know they will eat our flowers and someday i'll wish they weren't all up in the yard. but for now, i like them being able to be here. i like being somewhere so removed from town that they'll come up and hang out. i hope pratt gets to see this as he gets older. i'm sure he will.

one day, he'll probably be in a diaper and boots...come running in screaming, "mom, mom! deer! deer!"

oh, i just can't wait...

lesson: learned.

i had a video with another post uploaded...but something was wrong with the video. it was getting hung at four seconds. so i'll fix it...and repost.

for now...something else on my mind.

my roommate from college, emily. is married to jon. they adopted a son from moldova last year. his name is dennis. their blog can be found to the right. "the merryman family".

well, jon is working with an organization called sweet sleep. and i knew he was leaving the country for several days. and he posted something about the work they are doing on his facebook page. so i checked it out.

http://www.sweetsleep.blogspot.com/

here is what http://www.sweetsleep.org/ says about its purpose: "Sweet Sleep is a faith-based nonprofit organization that exists to share God’s love by providing beds to the world’s orphaned and abandoned children."

i was in the dmv today for at least thirty minutes. waiting. and so i began reading the blog site for sweet sleep on my phone. about three minutes in, i was crying all over the woman next to me.

i was sitting here a few minutes ago, making a list of things i need from target. and i was probably up to somewhere around...one hundred dollars. and i thought about the blog. and how i should add it to my friends list. so i went there again.

"casa de copii" that is the post that broke me. the eighteenth picture down.



the caption reads, "back to lilian! i am so in love with this boy! i did not want to leave him there. he loved human touch. whenever you would touch him, he would lean into your touch."

re-read that. if you can bear it.

"he loved human touch. whenever you would touch him, he would lean into your touch."

this little boy. in an orphanage. yearning for touch. the touch. that's all. just touch.

not mossimo cotton tissue t-shirts. not cookies. not starbucks coffee. not sandals. not lipgloss. not anything that can be bought at target.

no, instead...just touch.

i need my priorities straightened. thank you jon and emily. and everyone at sweet sleep.

lesson: learned.

update on sweet zoe.

i've said it before...but i just cannot imagine what they must be feeling. all sorts of emotions. please continue your prayers. your thoughts. your whatever-you-wanna-call-it.

love to each of you.

posted at 2 pm, wednesday afternoon.

I received a phone call from Zoe's oncologist around 11:30. There are 4 "variables" which we were awaiting to guide her treatment. 1) Bone marrow is disease FREE...YEA! 2) MYCN gene is NOT amplified...YEA!! 3) DNA index is HIGH(this is good...don't ask me why)...YEA!!! 4) Shimada is UNFAVORABLE...BOO!!!! We were hopeful for all "good" but hey, we will take what we can get. We are to meet with the oncologist Monday morning and get started after further discussion(i.e., consent forms signed, explanation again of what we are dealing with...a lot forgotten at first.) As you can imagine, my thoughts were racing during our conversation. I may have to come back after Monday and correct some of the information. BUT from what I can recall...she will undergo 6 cycles of chemotherapy 3 weeks apart. There are 3 combinations of chemotherapy agents that will be used; 2 cycles for each combination. Each cycle will last 5 days. Her tumor will be reevaluated after every other treatment. Between treatments 5 and 6 she will be prepared for stem cell transplant. After all of this she will be evaluated for surgery. They will hopefully be able to remove the tumor. She will then be treated with Accutane for 6 months. If you are wondering, this places her now at Stage 3, High Risk but she will be receiving Stage 4 "salvage" treatment(I believe; again, I will clarify Monday.) He said that the treatment for Stage 3, High Risk gave "only a 51%" cure rate and her prognosis would be improved with the Stage 4 treatment.


A lot to take in, huh?!?! I just cannot imagine a child having to endure this but they do and do it well! She will also undergo MIBG(radioactive iodine basically) scan next week. This substance will attach to neuroblastoma cells and will tell us further regarding any spread of disease. I believe this is the scan they will use to monitor response to therapy as well. They will have to give her a concentrated iodine solution(Lugols) at the same time to protect her thyroid.


I think that is enough for one update! I will probably post more later but am dealing with, "mommy, mommy..." to my left and "goo, gah, waaaaaa..." to my right.


P.S. Zoe cried for a few minutes today about losing her hair...further discussion revealed that she wanted to enjoy her new haircut for awhile. :) Needless to say, she is fine. We will be sporting this do for at least 2 weeks. I told her all girls need a change after that.

a boy after his father's heart...

the last one is my favorite. you can take the doctor out of the dentist office...but you can't take the dentist office out of the doctor. i mean, it looks just like he's got pratt in the dental chair. look how he's all pulling up his cheek...

hilarious!

pratt actually really enjoyed it. i'm sure the soft bristles felt good on his gums. and the toothpaste was banana and apple flavor. called grins and giggles.

thank you nana! he loved it!

time, flying.

before i had pratt, time was measured in semesters. clothes. types of scarves that i wore. were they thin and airy or thick and made of wool. it seemed that my life was moving slowly. school kept dragging on and on. and i remember wondering how i would ever write a dissertation. how i would ever finish it. starting it, beginning to write...yes. i can do that. i can start anything. but finishing...that's a whole other subject.

and now, i'm not even measuring time. i don't have to. i don't want to.

but for whatever reason, it's moving faster now than ever.

time flies when you're having fun.

truer words have never been spoken.

pratt grows a little bit every.single.day. he belly laughs. like last night, i had to walk away from he and his dad to keep from wetting my pants. and yes, i really mean that. like, i had to do the whole chant of, "don't pee, hannah...don't pee". we were laughing so hard. he had woken up upset. and then when i brought him to our room, he just fell out laughing. he would look at his dad then me, then just belly laugh. without taking any breath.

so many emotions go through me. i want to hold pratt as tight as i can to my chest. i want to jam my nose right in his neck. i want to kiss him and have him come at me with his mouth wide open, drooling all over me. all over my clothes.

i want time to stop. i want to pause our life here. i want clint to stay just as he is. i could stand to lose a few pounds...tighten up some areas, maybe erase a few sunspots. but other than that, i want to pause me, too. all three of us.

i want pratt's feet to stay as small as they are. i want his wrists to stay all swollen and cute. and his feet to be puffy.

this is all happening way too fast. and i don't know what to do about it.

i read somewhere recently where a mom took a picture every single morning for a full year. maybe that would work. but pictures don't do it justice. pictures don't capture what my family means to me.

for such a long time, i yearned for sleep. "just sleep through the night". i kept asking him over and over again. now he does it. and i find myself thinking that maybe he's sleeping too much. maybe i'm missing out on something. maybe i should wake him so that i can spend an extra hour with him. after all...an hour a day extra...that's like 30 extra in a month.

last night we ate dinner at our favorite asian restaurant. sushi and fried rice. and it was still light outside, so we strolled down to target for some things. it was a beautiful night. the weather. the lights. all of it. pratt loves to ride in his stroller.

i wished we could have strolled all the way home. just the three of us.

for such a long time, i've wanted our lives to be right where they are.

and now, they're here. and i'm terrified that something will change.

terrified. it keeps me up at night. how is it possible that i'm so happy...so truly happy...and that happiness is somehow...making me a nervous wreck. miserable. waiting on something bad to happen.

i'm nuts.

random pictures.

just a few random pictures that we took recently.

the first is pratt laying in a pile of clean clothes. when i was little, my mom would always get a warm towel out of the dryer for spencer and me when we were getting out of the bathtub. i loved it. and so lately, i've been getting all the sheets and towels out of the dryer and laying pratt on them. he loves it. he loves to roll around and get his slobber all over them. and because we think he's the greatest thing since sliced bread, we don't really mind the slobber.

look at those big, brown eyes. heaven, i tell you. heaven.



these are pictures i took the other day when it was something like near eighty degrees outside. pratt is so intrigued by ace.

visit with aunt betty.

aunt betty came up to hot springs this past weekend. and one lucky little boy got to go spend some time with her. he loves her and can't wait until he's old enough to go down and stay with her, rob, frank and nick for mardi gras parades!

he told me on the way home that he can't wait to eat his first king cake. maybe next year, pratt.

he's laughing so hard in these pictures because of skeet, the dog. he thinks animals are the funniest things ever. pretty much all day, we laugh at ace and yoda.

here are pratt and cookie reading. he loves to read. he loves to grab the pages and try to get them into his mouth. and it really doesn't even bother me. well, yes...it does. but i'm working on it. i know that i'll just have to accept that there will be times when he'll probably tear a page (it kills me to type that) and he'll probably mix play-doh colors before it's all over with. i'll have to be put on meds though...i won't even pretend i can handle that.

we have the eric carle board books...but i'm starting to think that maybe all children's books should come in board book format. then i wouldn't be so paranoid. i'm crazy, i know.



and his signature move. his two middle fingers in his mouth.

dear pratt.

dear pratt,

at ten pm tonight, i was going in to make sure you were all covered up in your bed. yes, we have a video monitor...but sometimes (no, really all the time) it just makes me feel better to see you in person. i do this alot, actually.

so as i had my hand on the door knob, i heard you begin to whimper. i rushed in to a very warm baby. you were all sweaty. and i immediately grabbed you up and held you as tight as i could to my chest. you wrapped your long, skinny arms around my neck and stopped crying. i'm not sure what it was. you might have been hungry. or it could have been your teeth. lately, i think it's your teeth. i think they bother you at night.

anyway, once your dad saw that i had you, he took you from me. this is typical. lately, he's a little stingy with holding you. especially at night. i think he loves to get you at night when you're sleepy...because you're extra cuddly then.

you realized that it was ten. and that you were doing something you weren't really supposed to be doing. i mean, you haven't been up at ten in a really long time.

you've started doing this thing with your tongue. you click it. like you hold your tongue at the roof of your mouth and then bring it down. and click it. it's really funny. and so when you do it, we do it. so tonight...around ten...when you should have been fast asleep in your bed, you, me and daddy clicked away.

you would click, then i would click, then daddy would click. then you would laugh. it was so precious. and your daddy and i wished that the moment would last forever. we really, really did.

then you would lay your head down on dad's shoulder, stick your two middle fingers in your mouth (right hand) and close your eyes. a few seconds would pass, and you'd sit up off dad's shoulder to look at his face, then mine...then you'd smile...lay back down...stick your fingers back in your mouth...close your eyes...and do it all over again. i bet you did for a good five minutes. i had to roll over to keep from laughing at you.

we really do mean it when we say that we wish you'd stay this age forever.

i honestly never, ever knew i could love anything as much as i love you. your daddy feels exactly the same way.

we love you so much.

update on zoe.

below is erin's latest post on sweet zoe.

i wanted to include a picture because it's always nice to put a face with a name.

as i read the update, i had pratt's monitor right next to me. i can hear the music coming through...and i can click on the video to see him sleeping soundly in his bed.

it's so hard for me to imagine what zoe's parents are feeling. i remember driving home from the hospital after pratt was born. he wasn't with us. it was just me and clint. i had not stopped crying. i mean, i began crying when he was two days old and we got the call in the hospital room that an iv had been put in his forehead. because supposedly there is a large vein there. and so they wanted to warn us when we saw him. they were afraid it might be shocking. yes, "shocking"...to say the least.

that's when i started crying. and i don't think i stopped until he got home ten days later. anyway...i remember driving home. or riding home. and clint got upset somewhere near bryant. i remember it like it was yesterday.

he said, "i'm supposed to be able to take care of you two. i'm supposed to be the one doing this. not the hospital. not the nurses. i feel helpless."

my feelings were different. immediately, i realized his feelings were those of a man. of a father. of a husband.

my feelings were those of a mother. of a wife. i just wanted him home. i wanted to be the caregiver. the provider.

i cannot imagine how erin feels at this moment. knowing that next week, zoe will start something...and erin will worry every single day.

our children aren't supposed to be sick. i would take any illness...and i honestly mean ANY illness for pratt. and i know that erin would say the same thing.

please keep zoe in your prayers. or in your thoughts. whatever you call them. think of her next week as she starts treatment.

as my dad says..."be thankful for your health. for without it...we have very little."

Posted 13 hours ago

Three days into this journey Dr. Mayo, my residency Program Director, sent a text. It reads, "Your dad saved her life. Pretty cool grandfather, I'd say." I cannot bring myself to erase this. While I absolutely recognize this and thank God everyday for the way things fell into place, I would also like to thank a silent hero. This would be my mom. In situations like these, I have realized that mothers have a remarkable instinct to take charge in order to overcome crisis. I have stepped back and seen strength in me that never could I have imagined I had. I have also seen it with my mother on many occasions. She has stepped in as surrogate for Miss Emma. :) She has also continued to be mother and friend to me, gramma to Zoe, wife to papa, mother-in-law, etc. She does not question the times I need to take a short nap, take a shower, post an update. For this, mom, I am so very grateful. We could not do it without you.

We are in Camden this weekend visiting with family and friends before we begin therapy. This weekend is the Daffodil Festival and with this was a Spaghetti Supper which we attended last night. Many people were able to visit with Zoe throughout the day and remarked at how great she seemed to be feeling. While this is true, she has not yet started therapy. I am afraid the picture of health will change within the week. Please continue to lift her up in prayer. She has an amazing spirit that is sure to get her through this.

I would like to thank Dr. Amy DeLuca of Camden. She has organized a Relay for Life team in Zoe's honor named "Hope for Zoe." While purchasing raffle tickets at the Relay for Life booth yesterday, I noticed luminaries "In honor of" people with or who have survived cancer. It was a strange feeling when I realized that I should buy one for Miss Zoe. What made it better was the hope that if all goes as well as possible, she may have completed treatment at the time of the walk in June. Lets "Hope for Zoe."

Everyday is a new day and everyday meets Ben and me with greater strength. I know there will be days that set us back but the awesome support we have will just lift us back to where we need to be for our little "tough nut." In random conversation last night, she informed me that she would live to be 132 years old!

Zoe, you are an awesome girl. Mommy, Daddy, Emma and so very many people love you. Stay strong, baby girl!

pratt's first bunking party.

here are pictures from pratt and anderson's first sleepover! as you can tell, pratt loves anderson. he would just smile at him. and he tried on several occasions to grab his face. i'm certain he was doing it just to be sweet...but we had to be careful. he's a sneaky little guy.

and last night we got to visit with bethany, michael and their little man named cash. i mean, how cute is he!? he LOVED pratt's horsey!



and this morning, clara took some pictures of me and pratt reading. thank you clara! it seems that mommy's are always taking the pictures...rarely are we in them! and pratt and i love book time...so these are extra special pictures.

i believe we're reading "llama, llama red pajama" and "the lonely firefly". two of pratt's favorites. as you can tell by his face. he's totally super cute.





also here is the latest update on zoe goss. this was posted thursday.

On the launching pad

Posted 1 day ago

I would like to apologize for not posting last night. We have noticed that we face the evenings with very little energy. A few hours of rest and we are ready to tackle a new day.

Yesterday, Zoe had an infusaport placed. This will allow access to a larger vein for chemotherapy, bloodwork, antibiotics, etc. and keep her from having an IV. She cannot stand the tape they use to secure the IV. She also underwent bone marrow biopsy from both hips yesterday. Gratefully, she was sedated and intubated through all of this.

Amazing...before last week she had not been sick a day in her life! When we went to the hospital last week, we knew nothing of allergies, reactions to anesthesia, medical history, etc. and now we know she does not tolerate oxycodone and LOVES versed. Two surgeries in less than a week. Wow!

So...What's next? I will make an attempt to explain. We know at this point that she is at least Stage 3 with Intermediate Risk. Stage 3 because her tumor cannot be removed surgically(because of vascular involvement) AND crosses midline(spine.) It does not appear to have spread at this time. She is automatically intermediate risk because she is Stage 3 age greater than 1 year. Depending upon the return of studies sent, she may stay at this level or go up. If tissue is found to be "unfavorable" and/or MYCN "amplified," she becomes Stage 3 High Risk. If bone marrow returns with evidence of spread, she becomes Stage 4. At her current level, she will undergo 4 cycles of chemotherapy 3 weeks apart(12 weeks total.)

We will then reevaluate the tumor. Let's hope that is where we stay!!

To see her, you would not believe this is happening. Even after her surgeries she requires very little Tylenol and is playful. It makes me angry to think of the creature growing inside of her and often I think I should slow her down to slow the tumor growth. What a kink in the road!!

For now, we will await the studies. We should know by the middle of next week. She will then begin therapy.

Please continue to pray with us!