ice day number 1.

number 1 because there's another ice day/no school tomorrow.

oh yay. that was sarcasm, btw.

it is hard to be at home all day with not a lot of fresh air lol the kids are "go outside and play" kids. they like that. today was not a day like that. it was a "don't be TOO loud bc EJ is on calls in the office because he can't drive either, omg stop taking out so many things at one time, no don't eat that, didn't i say to clean this up, IT IS NAPTIME, omg why isn't she sleeping...." kind of day.

and another one tomorrow!!

we did paint. we did do a lot of laundry. some fell asleep on the floor. we ate good food. so it wasn't a total loss. just long. and tiring. and i need more wine ;)

chemo bumped to wednesday for weather. next week, then, we have an appointment/physical downtown in the early morning, then chemo, and then check in for MRI that is at 12:45. it'll be a good time to keep food away from her for that long. that was sarcasm, again, by the way.

I don't feel really blog'like today. lol not very chatty. so I'll let some photos that I haven't posted, recently.

(I do want to update on Aidan's dance comp this past weekend (pic below) - they had 3 dances and got 4th, 3rd, and 2nd place for them! :D way to go dancer strong!)



I posted those last pics on my biz blog if you want to read my post on that.

praying for an awesome MRI. every day.

IG: theskelteseven

hospital rambling.

again we came into chemo sick. last month, it was an ear infection. december was filled with the encephalitis/meningitis debacle. this month, i could tell she was getting crankier by the day and then BAM! sick.

they moved her tuesday in-patient chemo to thursday bc there were no beds. we got here and i mentioned, prior, that she said her shoulder hurt - so we did xrays to make sure her port didnt move or anything. all looked fine. her ANC was 13,000, which basically indicates sick. we just assumed virus. i am not even certain she would have made counts without being sick.

by thursday evening, i was super confused. she had faded very quickly.  her shoulder area still hurt and she was just not herself. attending told us to keep her NPO (no food or drink), if she was like this in the middle of the night, so we could do an MRI fri morn.

they decided to do a virus test to rule things out and that was it -- RSV. annoyingly enough, i had taken corbin into the pedi on wednesday for her cough. so we have had to keep an extra watchful eye on her breathing, as well. so far so good - just a lot of coughing up phlegm.

as for reese  - that meant we did not need an MRI, since we found the root of the way she was acting.

this whole weekend has been… stressful. reese doesnt do anything normal so its just ::shrugs:: and guesses and preemptive meds.

her normally cold and purple ish feet were warm and red. so guesses of sepsis/cellulitis floated around. they gave her abx just in case. then that was disbanded as a possibility. her arm still hurt so we had another xray. totally clean. her HR was high from the RSV so they gave her more fluids - which just made her sodiums go higher. which is then only solved with NO fluids (so she will drink. she will *not* drink when she has maintenance fluids). she had a fever so along with abx, she got more steroids.  which has made her an angry bear. she started getting itchy - then a stronger rash formed. i think it was from the abx, honestly, even though they say probably not. whatever, she's getting benadryl. at one point her port wasnt drawing back. she doesnt really eat here and so she also needs to get potassium. something that helps one piece usually seems to harm another. such a balance.

one kid in the hospital has always been a double edged sword. being the parent at the hospital is nice. there's… control. youre not waiting to hear updates, youre not texting reminding the other parent of things you wanted to say to the nurse or dr. but youre also not sleeping. and its stressful to cater to a 3 year old kid on steroids. its even more stressful to be the parents making decisions and having to remind doctors how well you know your own kid. not nurses, not attendings… just the middle ground.

being at home is fun. its fun to take the other kids out. to hang out with the big kids on a smaller ratio ;) you arent having to talk to medical professionals every hour - you just hear what you need to know. but, again, you dont sleep. your whole family isnt together and thats disheartening. i get sort of… lost… at night without everyone. i just sit around watching tv too late and then finally crawl into bed hours later than i should have. then i also worry. EJ tells me things that are happening and i tell him what to do - even though he knows what to do. or already did those things. but its that type of scenario when you feel like you have to say it bc WHAT IF YOU DIDN'T!? annoying, im sure lol

and the stress doesnt end. yesterday evening, we facetimed bc she was so upset. i had EJ "pull hair" to calm her.  then again at 2:30 this morning, i facetimed her to sleep. she always wants whatever parent isnt there, of course.


and then it gets to the point where she feels better, but we have to finish things off. wean off some 'roids, finishing abx, check blood level in case she needs a quick transfusion… but at that time she wants to leave. "port off!!" bc she wants to go home. nothing is fun anymore. she gets bored. with things like RSV, we cant go play anywhere - and i cant even sneak her out of the room. she has no interest in playing with toys. and sometimes wants the TV off bc that means we are staying. its frustrating for her, but she's at that middle age where she understands, but not fully.


yesterday she missed the 80 degrees weather. the other kids played outside from the second i got home until past normal bedtime. reese missed aidan's morning soccer game, which she loves. and today it's icy. its 25 degrees or so and the roads are terrible for driving. i can hear the ice pellets on the window, here.


but soon, now less than 12 weeks as we were reminded by her oncologist on thursday, chemo will be done. i joked "it doesn't have to be" and he smiled and reminded me why you dont want to live on chemo ;) and also kind heartedly stated that he feels "this amount of time on chemo will be the perfect amount of time".

i will be lost when we arent in the hospital. when we dont see doctors extremely regularly. when there isnt something actively killing cells in her brain. when her body has to work it out on its own. when God hears our prayers and her body does those things beautifully and seamlessly.

we should be going home tomorrow. maybe the weekly vinc before we go. maybe some blood. then it will be tuesday. 11 weeks to go. so many plans for the summer. for the future. i can't wait to brush her hair again. we're going to the beach this summer with Lighthouse Family Retreats. from blog links to e-friends to random searches, i have known this family since fall 2012. diagnosed the same day. birthdays days apart. a mother who just "gets" me and has the same very expensive momcology degree - paid for in tears, heartache, experience, and, yes, dollars. and a family who will be with us at the retreat. the kids who we have talked about for almost a year and a half will play in the sand together. the mom who ive texted, late at night, to just hear someone understand what im frustrated or upset about, is going to sit on the beach and drink wine with me.

these are the types of plans that get me through the wonder. these things will get me from after-chemo MRI to the next. so i continue to plan.

reese should wake up from her afternoon benadryl induced nap soon and i need to pump. but hopefully, tomorrow, her nap will be in my bed, instead.

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icemageddon.

i wrote last week about how amazing reese felt. how normal she was being.

thursday was filled with my 2 youngest lovies doing what they do best - being best friends.

then the ice hit. we didnt have school on friday. i let them open up early birthday presents of aidan's (a big craft kit thingy) and play on the ice. reese checked it out, but was happier indoors lol


the rest of the wkend, we were lucky enough to get out a bit… went to the store, to get pizza, drove around very slowly to combat the horrible cabin fever. we did gingerbread trains and cuddled by the fire. cozied up with blankets. we used my belly as a chair. we waited for aidan's tooth to come out (today!!).



but during all of this, i was worried. worried to the point of crying and puking most of the day. reese woke up on, oh, friday? saturday? boogery, but with all the sinus crap going around, that was that. she was just feeling kinda crappy.

by monday, i posted this on reese's fb page:

womp womp. going to legacy with reese bc im pretty sure she has another ear infection - acting the same as she did the last time, gunk coming out of her nose yesterday and still out of her eyes. blech. hopefully its just a med infusion and we are out. i haaaaate when she is sick its the worst to see such a strong girl act so weak.
(aidan is "pulling hair" ^^^ in that pic lol reese's fave.)

on tuesday:

sigh. reesey just doesnt feel good she's SUPER tired - and was on the cusp for needing blood at labs yesterday so we'll go in tomorrow morning, early, and get some blood. i am hoping that peps her up. sometimes its like i forget what kids are like when they dont feel good. so if its "just wanna go to sleep" and weak, then thats reese mixed with low hemoglobin. which just makes it worse. then i worry more. and being 37w pregnant sort of whacks out my emotions to begin with.



on wednesday:

Well hemoglobin down a bit more so we are grabbing blood. Her ANC was 3100 on Monday and today it's 100. Likely a crap virus to go along with it all. I'm hoping the blood peps her up back to close to normal blah.

then…

we got some blood, reese ate some dinner, but is still weak and tired. since her ANC is likely zero right now, and from looking at huge drop, it seems that whats probably happening is she has a virus that she cant heal herself from right now. so she feels crappy, like our "regular" kids do when sick, but then even worse bc its so hard to fight. plus she was paaaale. so the need for blood made her weaker. so my prayer requests tonight are that she is pepped up a bit more in the morning (or we'll be going back to look for infection, check shunt, etc) and also prayers for peace for the rest of us.


and then last night i had already called back again. she was cold. my thermometer wasnt picking up a temp on her - even though it picked one up on sawyer, when i tested it. they said she'd basically be blue that cold - so i said okay and asked when she should feel the blood "pep" - they said if she wasnt acting more normal by this morning, to take her in. so we did. but not before miller got hugs.
when EJ got there, they knew this wasnt normal. reese barely was staying awake. she's shaky and weak. she tries to talk and its just too much work.

its like i time traveled. back to a horrible time a year ago - when she COULDN'T do those things. but this all happened in a matter of days.

they took blood to be cultured, urine sample, etc etc - checking all. they did a rapid MRI to check shunt and all looked good there, as well. EJ said that when the nurses heard she didnt even have to be sedated for the MRI (even though its very quick - you still can't move), they were even more worried - simply bc that's not reese.

i spent a lot of time the past few days wondering if her saying her head hurt or her shaky hands or all of this could be because of the tumor, somehow, compounding out of no where. i cried so much. i didnt eat barely at all. i just stared into space and held reese and wondered… the answer was, it seems, "amanda, thatd be extremely weird." and everything looks fine in her noggin. the brain of a mother is an amazing and horrible thing. its intuition is by far its greatest strength, knowing your child. knowing something is off - but the dark paths it can travel with anxiety and worry can remove all sense of security that you once had.

my fears changed so quickly - to possible sepsis. there is an infection somewhere. and they have to find it. she's getting fluids and broad spectrum abx. taking vitals every 15 mins. watching her BP so closely. her temp was recently 98deg - up from a bit over 95deg. right now, we are just watching to make sure she isnt septic, it seems. watching super closely.

EJ is there watching over our sweet baby. he knows i need sleep - to somewhat relax so i dont have a baby right now. so tonight, aidan and i will sleep in the spots where he and reese normally do. i will try not to stress, knowing that a dozen people have orders to keep their eyes on reesers.

prayers for reese, please, that the antibiotics kick in, that they figure out where this came from, and that reese is more… her, soon. she wouldn't even "squish the spider" today :(  her favorite game on the planet. so instead, i just sang our song to her and let my tears fall on her perfect head.

another reminder that things can do a 180 at any point in time. thank you for every sweet message and prayer today. reesey will feel better soon -- we just have to let the meds work. like always, right? ha.

merry christmas catch-up.

i am a creature of habit. i dont get twitchy when i buy a new brand of cell phone, id rather take the longer way to a location bc thats what ive always done, i am over the top about traditions.

this was the first year for any kid that i didnt get to wake them up by singing happy birthday. nor did i get to take aidan out for her 6 year old photos [yet]. nor did i get to take "OMG YOURE SIX RIGHT NOW!!" photos of her waking up that day. 

and it makes me sad. 

i havent written a blog post for miller for 9 or 10 months. which is hard bc my blog is basically her baby book. i had grand plans of printing it all out and such, but now there's no point. 

none of this matters, of course, in the grand scheme of things. but i guess, just to say, that not only do big things suck, but sometimes they make tiny things suck, too - that for a person like me... sigh... 

so i want to go back and do a few things -- just a regular ol' blog post of "whats been up" that ive missed a bit. 

we left the hospital on friday :) .....after surgery on tuesday. what a stud, right? 

reese goes back for chemo on thurs morning [in-patient] - so i'll be there til saturday, i think, while EJ works. 

the past few days with reese have been... interesting, to say the least lol we have had to wean her from dexamethasone and ::holyshit:: she was HULK SMASH REESE. for sunday and monday. her, what we assume, 'roid rage was horrible. she would scream for 30 mins because we didnt understand what she wanted. or bc she wanted to do xyz and we couldnt. or because the sky was blue. and i dont mean "ohhh cmon, 2 year olds scream bc of that". i mean, she has almost no voice today. we took her in on sunday night to the ER to make sure there wasnt something wrong. she didnt sleep. only screams. but pain meds didnt help - and honestly, i knew it wasnt pain bc it wasnt random spurts of not being able to be settled. when she was settled, it was ::poof:: over it. then she'd be like "mommyyy!!!" all happy. //crazy. she has been on dex several times, so honestly, i dont know what happened. but we swapped over to just the stress dose of her hydrocortisone and the day was simply dreamy. 

miller was happy reese is home ;) she let loose with some ziti haha

A and S at the dr for aidan :) and PJ'd miller.

now let me go back --- the first wkend of december, aidan was a part of the children's dallas christmas parade with her dance studio. its a huge deal bc the parade is so freakin' big. 

anyway, the night before, sawyer, aidan, and i stayed at the omni downtown :) it was a fun girls night and fun for the kids to play with their friends. 

aidan dancing with the group :)

and they rocked their #gingerfight shirts!!!! 

then there was christmas ::eek!!:: 

we made cookies for santa. 

sawyer and aidan asked santa for one thing each -- aidan: a doc mcstuffins dr kit. and sawyer: a new dvd player. she broke her last one lol



and it was a WHITE CHRISTMAS!! only aidan and sawyer went out - and only for a few mins haha we were not prepared ;)

and the rest of the day was fabulous :) my parents, bros, sil, niece all came over -- we ate and had fun. then the skelte 6 just hung out the rest of the evening.

and today, back to normal routine... a bit. 

but i guess, in the end, i should say that this normal is okay. things change and i have to roll with it. no one is going to be on my case in a few years bc miller's e-babybook isnt up to par for my own personal standards. aidan will never say "hey, where's my 6 year old HB song vid?!" and if she does -- i will explain. life right now is a roller coaster, but at least we're all on board. 
i hope everyone had a very merry christmas. :) new chemo starts tomorrow. prayers wanted.