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Showing posts with label eye check. Show all posts
Showing posts with label eye check. Show all posts

Wednesday, June 17, 2015

summer ramp up.

This summer has already been so full. We haven't done a ridiculous amount of things in the past 2 weeks, but every day is a happy one. They fight, they complain, they cry over nothing... they don't take naps and make me want to scream, but reese feels good all of the time, it seems. Dance recital came and went and we've already started summer classes. And the last day of school for the girls warmed my heart enough to last me a long time.


Recital this year was The Jungle Book and my kids were in a slew of dances. Besides the dances that aidan was in for her classes, she was also the baby elephant ;) and while small, it helped her be so much more confident in herself and her [amazing] abilities. Reese and Miller bounced around like the monkeys that they were supposed to be with the biggest smiles on their face. Sawyer shined in ways I had not seen before - she loves being on stage in any which way.

(all [terribly lit] pics taken at tech rehearsal)

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the last day of school, I ran around to each kid at their LDOS events. reese was first.

I cried.

I remember crying the first day in January 2014. When I first dropped her off at lawson, she didn't walk, she didn't even have a walker. She had the same teachers that day that I hugged and cried over the last day of school this year.

I can't explain to you what it feels like to absolutely trust your delicate child into people you don't know, at first. Reese was still on her babyPOG chemo, harsh, but working its way through her brain and a kid who could, only for a few mins, hold herself up against a table. One of her first goals was to sit in a chair.

what??

That seems so long ago.

Soon, she was using her walker, but I'd have to take her across the street, first. Then she started to go across with her walker. Then one day... she walked across with nothing. Not her walker, not my hand... and they were there to celebrate with me.

Her teachers, the people in PPCD, the other inclusion teachers, all of them, they were my lifeline. They were with her for so much of the day and now she goes to kindergarten where I need to learn to trust someone else. Someone else to talk me down and send me a picture of a perfect 4 year old, when I was worried that something may be wrong. Someone new to tell me how she is advancing and to relax. Someone who will let foxy join the class.

They had a small "graduation" where they walked around the school and waved and traipsed to pomp and circumstance. I couldn't believe that we were finally here, in life.

For many months, I could not picture what reese would look like, older. I don't know why. I don't know if my brain just wouldn't let me or if I was scared to. But on the last day of school, this year, I realized that this was exactly what I thought she'd look like.

Sassy, almost bob-cut hair, her high cheek dimple flirting with the camera. She is exactly who I knew she'd be. She looks just like she did at 2, but only older, wiser, even more awesome. She has a ponytail.

Aidan and Sawyer are reminders that time flies too quickly. I see Aidan growing up into this... pre-pre-teen or whatever 8-10yo is. It is funny and awkward and full of the in-between that I don't want to forget. She is silly and giggly and embarrassed. She is confident and nerdy and worth every bit of eyeroll she gives me.

Sawyer shows me that, besides that kids can be totally different than their siblings, that a little pause in life for a hug and a kiss can go a long way. She is an old soul trapped inside a bouncing ball. She loves life and it loves her back ten-fold. Almost 7 suits her well.

But it has been too fast. EJ made the comment this week that aidan is almost half way to leaving the house... to going to college.

I can't even comprehend that. It feels as if each day is so long, but the years keep passing and I can't make them stop no matter how hard I try. So for now, I just go to the their school lunch parties while I am still invited...

So. First day of school 2014

and now.


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Since then, every day is documented on instagram or with my underwater camera, at the pool (those coming soon. man, I love that tiny thing).

Dance is 4 days a week. Chemo is 1 day a week. Gym is as many times as I can get my butt there. Pool is the same. Yesterday we had our first ophthalmology appointment for reese, though.

They told me nothing that I didn't already know. A while back, the doctors realized that reese wasn't following their finger out of view on the left eye. I did my own test at home. I would cover her right eye, make a silly face and tell her to copy. She did. I would cover the right eye. She would not.

"I not see you, mommy!" she'd say giggling about how silly it was.

She can't see out of her left eye. 

I am not surprised, her doctors aren't, either - it is what can happen and it's likely been this way for 2.5 years at least. Anyone who knows her was extremely surprised because those who spend time w reese would know that she doesn't act this way at all - you would never know. But, remember, she probably doesn't remember having both, so that's why. Nothing changes, of course. It's just a quirk that she has and now I can just say it for fact, as opposed to guessing with my own eye games.

I am sitting at starbucks, blogging with my carb-free coffee, headphones in with pandora on because an amazing friend offered to give me a morning off.

I am so blessed. Between playing taxi, lifeguard, and maid, I am surrounded by the best people.

Thank you, Jesus, for this life. Thank you for my blessings that lift each moment that seems like a weight. We leave for lighthouse right after independence day and, while I can't imagine it better than last year, the way this summer is going, I feel like I will leave even fuller than before. This year, I have a toddler, as my youngest, not a baby. I can't wait for corbin to lose her mind in the sand with her sisters.

Back to laundry and cleaning. To summer worksheets and art projects. I'm off to make even more coffee and then sit on the couch in one huge pile of redheads - and hope they don't just kick each other under the blanket.




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.

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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!!
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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.
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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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