Monday, September 30, 2013

the newest normal.

the newest normal for us, now that school has started for ASM, is PT/OT, shopping ;), appointments, lunch with friends, chemo or labs, hospital for occasional fever, dance classes, soccer games... its not so bad. exhausting at times. now that im getting, erm, larger lol with corbin in here, some things get bit harder.


like sleeping on a twin hospital bed with a 34lb chub of love...

but it works. because reese asks to "cuddle with the baby" and lays on my belly.  and it has to work because thats where reese asks me to sleep. in bed with her. so thats where i will be. i mean, why not - she's been in our bed since she came home in december last year. ;) so....
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on the update side of things - we went in for a low fever last wkend from fri-sunday. since we left the hospital for chemo the last time, reese has become more aware of her port. randomly at home she'll say "no doctor touch my port. no port." so being at the hospital entails a lot of distractions. every doctor or nurse that comes in, she tells them that she'd like her "port off?"

she also yells at her IV pole, which she calls "my beep!!" and says "shhhh beep!!" when it goes off.

she's understanding the medical world a bit more. we can explain when we have quick vinc "port on and then we'll take it off and put a bandaid on" and she seems to understand a bit more that its not staying accessed. but its hard to distract her for an entire weekend, saying that not everyone can just pop it off because she asks to go home.

we cuddled and laughed and watched "too cute" on animal planet for hours, while at the hospital, the night i stayed with her. its quiet at the hospital. its not ideal, but its nice reese time.

i love just me and reese time. we have a few hrs on monday and wednesday together alone and we run around town like best friends until its time for PT/OT and then nap. then we run around picking sisters up.

last week we had our final eval for PPCD and looks like after a few meetings, she'll be going! it'll be so awesome for her to have therapy often and be around kids her age for a few hours a day. it will be hard on me, of course. as i type it, i want to cry. i want to just keep her with me all day. watch mickey, go shopping and lunch, cuddle on the couch. but i know she needs role models her age who walk and talk... who she wants to be like. she learns so much from peers. i see that with her sisters every day.
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she has been using complete sentences more often, which is amazing to me. she opened her hand, several times, at dinner last night, to hold her cup. she stands up on the couch (and cruises) as if its never been a problem. she also passed her hearing test WITHOUT being sedated -- so that is awesome!!

we went to jumpstreet yesterday afternoon. i think i was more impressed that reese just bounced and tossed around like a normal 3 year old. i want all of these things to be indicators of a good MRI coming (october 16)... to feel confident that we will get good news again. that she is in fact a miracle. and that what the doctors ordered is exactly what she needs for her tumor to die.

but sometimes i google and think OMG WHY DID I DO THIS?! no really. why do i google? i am then reminded of things the oncologists have said about stats and things. tumors arent the same. PMAs arent the same for each kid. protocols arent the same. its just not the same. but then i start to get queasy. i think about the worst. and then i pray. pray for peace. pray for healing. i pray that things continue to progress and that we see as many signs of "wow. reese, thats amazing" as i have been seeing. i pray that we dont see another setback, like last winter where her chemo didnt work. i worry about hair poking up and thinking "that must mean nothing's happening!!" and i make tiny comments to the nurses who smile and tell me that its totally normal.

nothing is truly normal.

today i actually made sure i could pick her hair off. it somehow made me feel better to know it was *this* close to coming back out.

but we can spend our days living as if we are normal, right? so we go to places like jumpstreet and main event, when counts are high, bc the girls have so much fun together. reese loves to do all those things - to be normal. to jump and bowl and play pretend video games. she loves to go to the dance studio and wait for A and S. she loves to ride in EJ's jeep. she loves to go to my parents' house after labs/chemo and eat mac/cheese. she sits up in the front seat while we wait in the school line for aidan and sawyer. every day we take a pen and put a heart on the inside of my palm. and one on the inside of her palm (and sometimes miller's if she wants to.) and high 5 or hold hands and put our hearts together. one day, that will be tattooed on me. throughout the day we show each other our hearts. then we give A and S one when they are around, if they want one. "just like the kissing hand!!" aidan tells us.
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soon we'll do all those things without thinking about counts, labs, chemo.... just because.

on other kiddo fronts -- aidan got her eyes checked bc she was getting headaches and said things were blurry sometimes (yeah, man, good thing to tell brain tumor parents, right? lol) and she needs glasses. i got her the most adorable frames everrrrr and they'll be here this week :)
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sawyer loves kindergarten. she hates soccer. but she goes and sort of tries. lol she likes dance, though. even if she gets in trouble for socializing the entire time ;)
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miller is hilarious and talks all the time. she and reese are the best of friends. reese wants to go get miller, with me, every morning. which is heavy coming down the stairs. usually we all just scoot together lol then reese gives miller noogies and tousles her hair, like a big sister does.
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living each day as it comes, this fall gets harder and harder as october creeps up on us. last year, october was filled with missed preschool days bc of random, unexplainable pukes that seemed to have resolved in an instant. leading to a very sleepy child and no peeing. ER visits for "UTIs and dehydration" (snort.), and finally, ending the month by being told she has a brain tumor. the month was sprinkled with halloween crafts, the pumpkin patch, and other events as we thought things would somehow resolve itself. since the concept of a brain tumor was obviously out of the question. even having an MRI scheduled for early in the month bc her "bad arm" wasn't working - but having to cancel that bc she was sick.

this year we'll have halloween crafts, the pumpkin patch, and other holiday events without a sleeping toddler on EJ's shoulder. without a kid passed out in the stroller as we just kept thinking it was the dehydration or a virus or something else the ER docs said. this next MRI will take us through the "anniversary" of the worst few months of our life - and will hopefully turn into the best. trick or treating with sisters, thanksgiving food with family, a new baby... and a christmas without brain surgery the week prior. i am excited for the possibility. and praying for certainty. even though we know nothing is certain - except for the day we have and the love we give.
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  1. I am so excited to see your pictures these next few months! It makes me cry thinking about all the beautiful memories you will be creating with your little ones. You really are an inspiration Amanda. You make me want to snuggle my babies and be the best mom I can be.


  2. beautiful. simply beautiful. reese is the cutest thing I have ever seen. xoxo ~Jenn

  3. You are inspiring - for being brave, for being afraid and sharing your fears, for being such a strong mommy to those girls. I don't know if I'd be able to be as awesome if I were walking in your shoes. Prayers for sweet Reese and for all of you

  4. My child was diagnosed with a heart defect last October... And I am going to give birth this month. October is a weird month for me too. Lots of love to your family and prayers always for Reese.

  5. One of your best blogs. So much fun reading about what goes on in your day and your girl's. It may be a new normal for you but really, it sounds pretty darn normal. It is up to you how you want to handle what you've been given and to push forward even when it's not so fun. But you've chosen to embrace it (not without worry) and make the best of each day. You are a great role model for your girls and one day they will realize how strong you were because you made sure their lives were "normal." You and EJ are giving your girls what they will always treasure, each other. For the rest of their lives, they will always be there for each other.