The Pinch

So, I learned alot from my friend Jessika. One of the most important was to take my health very seriously. Today I did something I haven't done in 2.5 years. I know, too long. Anyway. I got my cervix pinched. Of course that isn't what it's really called but that is totally what they do. I mean if they called it a cervix pinching text who would get one? Not this girl. I think a dude named it. Not that PAP smear is much better. But at least it doesn't sound painful. Which it is. For hours. On the up side I have a doctor now. For Me. I wont get the results for a few weeks but I already feel better. Even though it took two hours at the office it was nice to be doing something for me, alone. Plus it gave me a jump start on the book for book club next month. (my pick).

Lacking?

After we got he news about Em's ASD i started telling people she would need surgery. i let doctors, friends and family know. after telling people all day josh made a comment that i have often wondered about. it was along the lines that he would rather not plan of her having surgery but hope that the hole might still close. i took that as faith that the hole would close. maybe that wasn't what he meant but it got me thinking.

does planning for the thing that looks like it is going to happen as opposed to what you want to have happen mean you have a lack of faith?

i have wicked bad anxiety, especially about decision making. so it is really hard for me to differentiate between anxiety and inspiration. usually i just try and cover my bases if it has to do with health and safety and just do it either way.
what if i just went with the hole closing on it's own and then we need surgery and i am totally unprepared? i realize it probably shouldn't be one way or the other but when it comes to decisions that's how i roll. i always think of the line from Say Anything where the girl says she always assumes the worst will happen so when it doesn't she is pleasantly surprised. that's me to a tea.

so do i wish the hole would close alone? yes, very much. would i go with that and not get ready for it? nope. so maybe i am lacking faith. faith that the hole will be gone next time we check. however, i do have faith that i am doing EVERYTHING i can do keep this kiddo alive and i'll take all the help i can get.

don't get me wrong. i'm not arguing semantics or anything. just pondering.

My New Catch Phrase

Most people know I really, really hate stupid people. Now, that doesn't mean I don't like people who didn't get an education. Although I only like them in moderation. The people I am talking about are the people who think rules don't apply to them, don't use common sense and don't think before they speak, among other things. I just have to patience for those who know better.

Those that read my blog know Emmeline's medical situation is complicated at best. Her cardiologist said absolutely no nursery at church until after her surgery. Well, that pretty much means never. By the time we get the ASD repaired she will go into older classes anyway. That being said, the decision about nursery is totally up to me and Josh. There are a few other people I would let know our decision and maybe at listen to theirs.
Anyway, I was approached by someone who doesn't fall on either group. Emmeline was eating a snack as he waled up. This is how it went down. (what I wish I said is in parenthesis).

him: Those look like yummy snacks.
me: Yep she really likes them.
him: You know where else they have really yummy snacks...nursery.
me: (UM WHAT!!???) Yeah I bet they do.
him: So, [at Emmeline] are you ready to go to nursery?
me: Smiling (I want to kick you and then slam your head into the wall)
him: Or should I be asking if mommy is ready to let you go into nursery?
me: (screw it you are a dead man). Smaller smile.
him:[turning to me with a judgmental smile] So are you?
me: [trying to keep my tone level]. I never had a problem "letting" her go to nursery, she loves it. But her cardiologist said she can't go until her heart is repaired so she doesn't die. [this was followed by the "Say something now B*^&%" stare].
him: Fumbling about how he had something to do. (a little to late).

Sadly I was so taken aback by this encounter so i couldn't properly make him feel as dumb as he sounded and deserved. I'm sure I'll get another chance though.

When it comes to picking up Isabella from school I either leave so I get there 30 minutes before school gets out to be first in line or when school has been out for 10 minutes so the line is already moving. This way I can't see the line cutters, and there always are some. Well, Em has been sleeping later so I ended up doing the latter. I thought I was safe. I guess my hopes were too high. There is a lot of stopping and going as they feed cars into the line to get you kid loaded into your car. Some people, (including me) don't like it so we wait until there is a little space and then pull up. That way there isn't all that silly brake tapping. Well, the guy behind me didn't like that and when the gap went past him, he cut across the other lane of traffic, onto the playground and u-turned and passed 25 cars!! Um hello! WHO DO YOU THINK YOU ARE!!!!! I hate you! And all the little children do too!
What kills me is they felt totally justified in doing that. Where are you from?! I think I am just going to start checking Isabella out of school everyday through the front office since these parents have no self control.

I am generally able to bottle up my rage like every healthy person should but when it comes to people like this I have come up with my new favorite catch phrase. I find it is applicable in so many situations and would help society quite a bit.

They should be put down.

Isa's Valentine Party

Even though em's doctors would probably frown about it, we went to isa's school party. There are some things where i demand to be normal. anyway, it was pretty fun. really crazy since it is just one big sugar eating fest. i managed to remember my camera for the first time ever. this apparently made me look like a pro because the classroom mom roped me into taking head shots of all the kids for the teachers end of the year present. i thought it wouldn't be so bad and i could get most of their pics that day but most of them had stained teeth or a ring around their mouths from eating so much candy so that was out. not sure when I'll be able to get them without the teacher catching on but we will see.




Isa and Mik

Isa ans her very best friend


Class shot!

Silly class shot. we had to remind them that they could be silly but to make sure they weren't hurting their neighbor!

A New Friend?

So, Emmeline is FAR from being ready to potty train. she has no idea what we are doing when we go to the bathroom, can't even approximate the word potty, and doesn't care when she is wet or dirty. however, i have begun to realize with this kid that she makes me do something for about 6 months before she will pay attention to me about it. it's like she is waiting to see if I'm serious about it or not. so...we gto a potty. I think it's cute.




Emmeline not so much.



going to Isa for protection



finally warming up to what i can only assume she thinks is a new chair.



we have tried sitting on it several times a day since we go tit and she humors me. it's extra tricky to teach em to pee in the potty because the child barely pees since we keep her on the verge of being dehydrated in hopes it will make her thirsty enough to drink by mouth. maybe this summer. either way it's cute. that's all that matters right?

Stopping

i have been in a real funk. death is never an easy thing. the circumstances in this case make it even harder for me. i find myself bursting into tears of rage and anger. the kids keep looking at me weird. the tears keep coming, and coming. lucky i havn't burst into tears in front of a total stranger yet but it has only been two days. i feel sick. physically. i can't seem to shake it. it's probably from stress but it stresses me out knowing if i would just calm down i wouldn't be sick. other people sad makes me sad, and there are a lot of sad people. music makes it worse. feelings make me uncomfortable. i have always had an easier time embracing my emotions though music. pretty much any emotion. that is not to say i have an easier time dealing with me emotions through music but i can at least figure out what they are. baby steps right? either way i stop. just stop and stare, several times a day. when it becomes to much.

many beautiful things have been said about jessika. i don't think i can top them or even come close. her family amazes me. she amazes me.

A Dozen Boogie Robots!

Isabella picked a really cute valentine this year for "us" to make. They ended up being really complicated and time consuming. of course. every time i looked at them i couldn't help but think of that line. Boogie!!!!



close up. those aluminum foil arms were the bane of my existence. and i had to make WAY more then 1 dozen.


this giant one is for her teacher.

Really, Really Ridiculously Good Looking

Taking pictures of emmeline is super hard. lets be honest, when her head hangs over to the side like she does it makes her look super disabled. That makes me sad and freaks me out a little bit. also, she is the WORST blinker in the world. the red eye reducer gets her almost all of the time. so, when i managed to get these shots, where her head isn't hanging to bad and her eyes were open (mostly) i knew i hit the jack pot.



Trying to act uninterested.



deciding if i am interesting enough to keep her attention.



Finally coaxing a smile



rubbing the flash from her eyes. hey, it hurts to keep them open. i had to trick her a little.



Oh yeah, i have that other kid. isabella has reached that stage where is is hard to get anything but a very posed picture or a scowl. lucky she was sucked into Word Girl so she didn't notice me.

Josh's fault

so... i have been collecting pictures to do a really cute post of emmeline and isa. josh stole them last night and posted them to his facebook before i got to post them to my blog. no, i hadn't waited a really long time to get them off the card either. so, if you want to see them i guess you should go to his facebook.

WHY!?

I HATE America's Funniest Videos!!!!!! the show consists of nothing but practical jokes, manipulation, crotch shots, and cruelty. Why do people think it is so funny to watch someone be afraid or hurt? josh and isa love it. they even call me over to see ones they say are "so funny". the one that sent me over the edge today though was one josh even rewound for me to see. it was a baby. very cute wide eyed little boy. his "mother" was winding a jack-in-the box. as the song progressed you could see the baby was getting upset. his breathing became faster, his eyes wider and his lip started to quiver. the "mother" kept going. until the jack-in-the box popped out and scared the baby, making him burst into tears of fear! all to be on AFV. WHY IS THIS FUNNY?!?!?!?! ( i put mother in "" because i sincerely hope it wasn't his real mother who did this). i find it really disturbing that people enjoy watching other people upset. I realize this makes me sound totally old and like i have no sense of humor. but anyone who knows me knows that isn't true. plus if i have to like this to have a sense of humor i think i'll pass.

Blerg

So Isa called to me from her room this morning while i was feeding Em to tell me she threw up. great. emmeline hasn't been feeling well this week. she has been refusing to eat and waking up several times a night. she never got a fever and she only puked after she gagged while eating so we weren't sure what was wrong with her. well, she started to perk up yesterday morning but still wasn't eating great.
so...I am hoping the two aren't related because that would mean it's only a matter of time before i get it too. not only do i still remember last time we had a stomach bug but i really can't have any time off right now. emmeline is extra needy with me when she doesn't feel well.
as a matter of fact she freaks out several times a day at the very sight of josh until i introduce him to her as her dad and then she is all sweet. weird i know. anyway, here's hoping.
i have been intentionally avoiding foods i like today in case i puke them up later. i was thinking it would be a great diet strategy if i ate all the foods i love because then i wouldn't want to eat them for a while. i couldn't do it. i like food to much.

really, really real?

I might be in denial. i should be alot more freaked out then i am, about pretty much everything. this has been one crap week. i post about how life is turning around for me and then boom. i feel like the little boy at the beginning of despicable me. you know. the one who dropped his ice cream and then gru comes along and makes him a balloon animal only to pop it after watching the little boy enjoy it. and laughs. yep, that would be me this week.

a few week s ago if i had this week it would have taken me months to recover. i would have felt totally defeated. like i was wasting everyone's time. This week (excluding one thing) i have taken the bad news in stride. i am excited by this and a little worried. what if i am just denying my insanity and in a few days i hit the wall? sometimes i laugh at the things that are happening right now. that part i am pretty sure is the crazy. the part that can't handle it, so it laughs. yes, i realize i am talking about my crazy like a thing separate from myself. that is usually what it feels like. like i am possessed. maybe i could get an exorcism? if only it would be fixed that quickly.
either way i figure i should try and enjoy my new found ability to not freak out. even if it might only be for a little while. right?

The Terrible, Horrible, No Good Very Bad Day

I was supposed to get to sleep in today. But Emmeline didn't agree. She cried and screamed until she not only woke up Isa but made in impossible to have any quiet. I could tell it was going to be a terrible horrible no good very bad day.

Then when i tried to feed Emmeline she decided she could do it all by herself. she couldn't.
after breakfast i tried to take a shower. i did all the laundry yesterday. i thought. some how i missed my clothes. i could tell it was going to be a terrible horrible no good very bad day.

i think I'll hibernate.

after my shower i gave the girls a bath. well, they gave the bathroom a bath. i stepped out of the bathroom for a minute to get their clothes. Emmeline went under. and puked in the tub. Isabella HAD to wear a new jacket a friend gave her and the outfit i picked just wouldn't do.

when i tried to get dressed nothing looked right. when i found an outfit that would do i put on my tights. Emmeline pooped. as i was changing her she kicked my with her sharp pointy shoes. i don''t like those shoes. i got a run in my (new) tights. i could tell it was going to be a terrible horrible no good very bad day.

I fixed Emmeline's hair and it looked adorable. at least i thought so anyway. she just wanted me to hold her. i wasn't ready and nicely told her NO!!!!! she 5 point crawled, rubbing her head on the floor like another leg. so much for fixing her hair. i could tell it was going to be a terrible horrible no good very bad day.

Emmeline is asleep now. it's 4pm. she is going to be one happy/hyper baby later but it is totally worth it right now. some days i feel like one great big cosmic joke. but i might be convinced to put off hibernating for a little while longer.

selfishness

my friend is dying. she shouldn't be. I'm not just saying that because she is young, a mother, wife or friend. i am saying it because she really shouldn't be. a doctor screwed up. big time. now that will cost dearly. it will cost a mother, wife and a friend. what will it cost him? not nearly enough.

selfishly i feel guilt. guilt when i breath, guilt when i look at my kids and realize i will probably be able to see them tomorrow. guilt for thinking that eating that candy bar will make me fat. guilt for having the chance to do so many things over again. to keep trying. i don't think Jess would want me to feel that way. i know she wouldn't. she is amazing. beautifully strong. even now she has a greats sense of humor. she wants people to be happy. i hate goodbyes. i always have. they are so often hard. this one is no exception. as i cry i remember her smile and can't help but smile too. i know she wouldn't want me to be sad. she would want me to learn. make every moment count. give extra hugs. yell less. be grateful.

i love you Jess. look out for us.

My Afternoon

It's high time i posted about Isabella right? honestly i wish it wasn't a post like this but hey. it's what happened.

we were at target. isa did great helping my during groceries so she asked if we could go look at toys. i said yes we can LOOK. in a bout two seconds she had wandered off. i watched her go and stood where i was. she only had a few ways to go so i knew she would run into me in a second. she did. a little panicked. she said, "why didn't you follow me?". i responded that is was her job to follow mommy int eh store not mommy following her. i then turned and looked at the end cap. i turn back around. she is gone. again. rather then freak out i figure she said she wanted to look at toys, she must me in the toy section somewhere so i did a loop around. nothing. another loop. again, nothing. one more loop for good measure and i started trying to calm myself down and say, "she is fine, no one took my kid". one more lap. ok, maybe someone did take my kid. i went over to customer service and let them know. they paged her, waiting longer then a mother with a missing child wants to wait. finally i said she should have been here if she heard it. next thing i know the worker whips out a radio and says something no mother wants to hear about there kid. "CODE YELLOW, CODE YELLOW, CODE YELLOW. WE HAVE A MISSING 7 YEAR OLD IN A WHITE SHIRT AND PLAID SKIRT. NAMED ISABELLA HARRIS." the response was even worse. "I'LL COVER THE GROCERY EXIT". "I'VE GOT THE ELECTRONICS EXIT". "I'VE GOT THE BATHROOMS." next thing i know a couple of buff guys in black outfits come stand by the door checking everyone who leaves. as i stood there looking at the guard i realized. "he is there to make sure no one leaves with MY kid". i burst into tears. granted i am super emotional right now for other reasons but this definitely ranks pretty high on my fear list.

of course it has a good ending or i wouldn't be posting right now. in the end she was playing a video game in electronics. i could have strangled her and hugged her to death at the same time. as soon as she saw me and realized that i had had no idea where she was all that time she freaked out. she started getting all teary and wouldn't leave my side the rest of the trip. not even to load the buggy 3 feet away. when she got to the car. she said "i never want to leave the house again". i have to say. i don't want her to either.

HOLE

Today was one of em's specialist appointments. Cardiology. that one freaks me out. last year when we went i was sure they would find nothing. i mean she had had at least 30 ultrasounds done on her heart before we moved here. all saying the same thing. it's fine. apparently "fine" doesn't mean that same thing to everyone. apparently it can mean "well, your kid wont die right this second". anyway, they found an ASD (hole) and a Bicuspid Aortic Valve. both of which weren't "fine" to me. granted i didn't do my normal freak out when i got this news because my AMAZING cousin Emily also had an ASD and had open heart surgery a few years ago. she is doing great and her hole was pretty darn big. they didn't find hers until adulthood. It probably isn't the best for her but works out great for me. i have someone to go to with all my questions i forget to ask the cardiologist. anyway, she is great. it really calms my nerves. until today.

we were hoping em's hole was closing/closed. it isn't. not at all. :( not only hasn't it closed even a little but the right side of her heart is beginning to swell. it is no longer in normal limits. needless to say, not what we had hoped. we have been moved to a 6 month check up schedule. he was hoping she would make it to 20kg before we needed to do the surgery route. it isn't looking good. i was afraid this would mean we would have to do open heart. thankfully the surgeon is OK with doing the catheter procedure(described on the ASD treatment section) around 15kg so we only have about 4 lbs to go. he also gave me the clear to feed her as much butter and cream as i want without hurting her heart so it shouldn't be to hard to get 4 lbs in 6 months. (as i was typing this i kind of freaked myself out and had to call the nurse. i mean how do you not freak out about your kids heart swelling!)

oddly I'm not becoming overwhelmed by this. don't get me wrong. i am terrified. absolutely terrified. the overwhelmed thing might change as her appointment and eminent surgery grow closer. i expect it to. i just hope i don't have to watch my daughter wasting away before my very eyes like i have had to do in the past. several times. like i said in my previous post though, she is one tough cookie. she can handle herself. i know that. but in the back of my mind i know there are always risks with having surgery. em will have had 7 after her heart repair. 7 probably before she turns 3. statistically that isn't good. lets hope she is to stubborn to deal with statistics.

as a side joke, josh and i decided to test whether or not anyone was reading the paper work they made us fill out. again. so whenever they asked for an explanation of any of her medical problems we just put "hole". no body said anything. this just validates my point that the paper work is just to cover their butts. they don't read it. they just check to see that you signed it. if that.

i promised cute pictures this time around. these i figure cover two bases. seeing what my little trooper goes through on a routine basis and adoring the cuteness. and fat. but hey, we worked hard on that fat.

In a chair just like us.


our chairs are boring.


something way more interesting.

EKG


you've got to be kidding me.

fine i'll do it.


ok so i know she looks totally obese in this picture. it's just the perfect angle to show off all the fat we worked so hard on.


ECHO

pretty cute right?

Really Living

Through everything with emmeline i kept telling myself "if "this" would just happen i could finally relax". That was back when i thought there was only one thing wrong with her. When we would find another i would think "surely this is it". but it wasn't. not by a long shot. We really were blessed though. CHARGE has affected emmeline in a very small way compared to her peers. Does that make it easier? not really. It's always hard to watch your child struggle. it's weird to think she has a mild case when she has 9 specialists and 7 therapists but that's just how it works. a little bit of everything. then add the stroke and that just makes everything a little more complicated. well let me tell you. MY KID IS AMAZING!!!!!!

even when she was a newborn in the hospital and a doctor would say "i don't think she'll ever..." or "if she doesn't (fill int he blank) then we will have to..." she would turn around and prove them wrong. no, we couldn't trick her or anything. she had to really want it. and usually she did.

Emmeline can make my life pretty miserable. when she does something she goes all the way. none of this half way stuff. if she wanted to sit she would sit, walk she would walk, eat she would eat, stand on the table and scare mommy, check. she comes by her stubbornness fairly. i mean she is half perkins half harris. And it has saved her life. she would never let go. she sacred us several times getting really close to the edge but she still hung on.

even with all her accomplishments before now i still didn't feel that big relief. there was always another huge goal. something i really, really wanted. that made it feel like i couldn't breath in all the way. the other day, i took a breath. a big one. it reached parts of my lungs that haven't moved in a while. it didn't stay that way but i breathed. all of a sudden i could see other things the next feeding, or appointment. things for me. weird. have i done them yet? no. but i actually had room in my brain for them.

the event that really pushed me over the edge of living was emmeline's annual evaluation with ECI. she has been at least 6 months behind in every area since birth. well, after the eval she got the following scores. they are by month age. emmeline is currently 28 months old.

Cognition 29
self help/adaptive 26
communication 21 25%delay. pretty good for having 50% hearing
gross/fine motor 28
social emotional 30!

when they told me the scores i asked if those we just the points she got and not the age. they smiled and said no, it's that age! i was floored! She really is amazing. she did all the hard work. and through her hard work we can both start living. her for the first time, and me again. it has truly been wonderful to watch her grow and learn. pretty much since May 10. before that she was so focused on staying alive. then everything equalized. well, not right away. like i said, she worked/works really hard. if she would every let me video her doing something other then dancing i could show you. you will probably see several more of these type of posts as things start to sink in. i mean i posted plenty about how hard everything was. i figure i should try and give as much time to being happy right?

so, now if i could just remember what to do with an "average" kid.

i have been trying all day to add a couple cute pictures of emmeline to this post but sadly you will have to wait until next time.

A Nice Pick Me Up

i have been kind of burnt out on couponing lately so i haven't been going much. well, i really needed to roll over some rewards so i went out this morning and scored a GREAT deal.

9 sure deodorants
5 Maalox advanced
1 gas prevention
1 nivea arctic freeze after shave moisturizer
1 pro clinical toothpaste


.04!!!!

my cvs deal wasn't as good since i had to pay .61 for that one. but when it's all totaled i paid .65 for $65.14 worth of merchandise. not too bad.

The Gasp That Never Came

some people say I focus on the negative. I say i am preparing for the worst case scenario. Either way it has made me a nervous wreck. well, probably not just that. usually i can worry about all the bad things that are going to happen because my anxiety level is "manageable" so the worry doesn't push me over whatever edge i am near. There are alot of new stresses in dear old Texas that keep my anxiety at an all new high. so along with the worry just call me CRAZY!

well, i was talking to em's PT today about this being a "test" winter for her to see if she will be able to go to the public school preschool to get therapy after she graduates from ECI. I told her that we are hoping that with her tonsils and adenoids out she wont get pneumonia so much (she had it 4 times last year). She has really come very far since her tonsils were taken out. it is really amazing. no one expected such a drastic turn around. she had her first night since two weeks old without supplemental O2 the night right after surgery.

before the surgery she was a VERY loud sleeper. she would snore a lot. in the month or two leading up to the surgery it got progressively worse. as she got cold after pneumonia after cold after flu etc.. in the week before the surgery i had to sleep on the couch. they were working her in as quickly as possible but it had gotten to where as soon as she fell asleep she would quit breathing. her O2 levels hovered around the 60-70 range as she would dose off and then wake gasping for air only to fall right back to sleep from sheer exhaustion. it was unbearable to listen to. josh kindly slept in the room with her taking care of her as best he could while i lay on the couch listening to the alarm go off again, and again. it was heart breaking.

when i brought her home i still lay there listening until late into the night. just listening. to the nothing. i got up several times to make sure she was still breathing. after all up until now the gasp let me know she was still alive. if only just, sometimes.

i have often toy with the idea of writing a book about all this. but lets be serious. who wants to read a book where the person is still bitter and jaded? no one, that's who. so i have decided it would probably be better to wait until i might actually have something to say that people might want to hear. i even came up with a title that will get peoples attention but not really mean what they think it means. it makes me smile, knowing how hard we worked to accomplish it. The Gasp That Never Came.

A little Rant...To Prove I've Still Got It

when i was little i played outside. my sisters and i spent hours playing 4 square, steal the flag, ghost in the graveyard, soccer, and the occasional game of "see what we could get the neighbor boy to eat" (we were well educated in what plants were safe to eat but he didn't know that ;)).

as i was driving home after picking isa up from school we passed the playground near our building. i glared at the hoodlums. they ruin our park. i don't even want to take isa out there. she often asks if she can go out by herself for " just a minute". yeah, no. not only are their mean kids but it is way to open for child snatching. some might say i am too paranoid but i would say the parents of the kid who got snatched weren't paranoid enough. occasionally there will be one maybe two parents out there but usually no adults.
i also overheard a maybe 10 year old teaching the younger boys that it is ok to hit girls if you are under 18 because they wont send kids to prison. nice.

what the crap!? people teach your kids. you have made my daughter a shut in. you suck for that.