To my Children on Mother's Day

I can't thank you enough for being given the privilege of being your Mom.
And I can't apologize enough for the things I did wrong.

Our life is crazy and wild. And I wouldn't trade a minute of it.
Even the minutes that made us hurt, because those are the ones that made us stronger.
Those are the ones that let me, as your mother, wrap you in my love, and kiss away boo-boos and tell you everything would be ok. Even when I wasn't sure it would.

Cause that's what Moms do.
Or at least that's what I've figured out over the last 16 years of being a Mom.

Because there was no handbook that came with any of you.
Sure, there were plenty of Dr Spock books, and "What to Expect...." books and other experts ready to tell me when to feed you, when to change your diaper, when to put you to sleep and when to wake you up. What car seat, stroller, high chair, bathtub, thermometer, brand of diapers, wipes and formula were the best for you. When and how to potty train you. How to "baby proof" the house.

I bought a few of those books. And I read a few pages of them.

And then I realized, through common sense and a lot of advice from my Moms and Grandmas and aunts and sisters and friends that you will cry when you are hungry or need changed. And when those basic needs are met if you keep crying it's perfectly ok to put you in your bed and let you exercise your lungs for a little while longer.
And if I put you to bed too early-you would be up even earlier. So if I put you to bed later, I would actually get a long stretch of good sleep. And those nights that you did wake up, it was the most magical time to sit and rock you back to sleep, just you and I.
And to never, never, ever wake a sleeping baby. EVER.
As far as car seats, strollers, and all that stuff goes, breaking the bank or taking out a small loan to buy the most expensive, top-of-the-line brand didn't make you any happier or better baby. That brand comparison stuff comes a little later-and lasts a lot longer-and that there are mean kids out there who will judge you by your brands. Toddlers don't pass judgement on whether you are in a Britax car seat or a Graco one. Just the Moms did, and it's easier for me to walk away from those people than it would be for you growing up.
As far as potty training goes, they don't tell you boys are much harder than girls, and that at some point I would be throwing Bob the Builder underwear away in the McDonalds bathroom because I thought taking you to the play place for lunch in your big boy underwear would be the breakthrough in potty training. And I forgot to pack a diaper, a clean pair of underwear or a plastic baggie.
That "baby proofing" the house really meant putting everything I ever liked, and wanted to keep, away until you were, say, about 10. And that I wasn't going to do that. I wasn't going to decorate the top half of the Christmas tree only, or cover every outlet so that when I needed one, I had to pry the cover off and break a nail in the process. I was going to teach you which items are yours and ok to touch and which are not. And if you happened to shock yourself trying to plug your Christmas tree lights in, you would only do that once.
Those books don't tell you that your baby will roll off the bed, or changing table because you turned your back for one second. And that they will be fine after all their tears, and mine.

It wasn't one of those books I referenced when I didn't know how high I could let your temperature get before I needed to worry. Or how much Tylenol was ok to give. Or what was the best way to relieve a colicky baby or constipated baby. Or if that cough sounded like a barking seal-and how to help. It was my Mom. Or My sister or Aunt. Another Mother.

And I messed up. A lot.
I forgot it was 'dress like your favorite book character' day at school and had to come up with a last minute make-shift costume at midnight.
I sent store bought cookies when homemade ones were still allowed.
I wasn't a PTA mom or a classroom volunteer Mom, or a bus-stop Mom.
I threw away most of the artwork/schoolwork you brought home-just saving my favorites instead of packing them away.
I was so tired and broke that one night after work I let you pick out your dinner at the Conoco Gas station around the corner from our house, so I didn't have to cook anything and could use the gas charge card. I did make sure you at least got a sandwich made on whole wheat and milk to drink along with your chips and cookies.
I was late picking you up from school because I was 8 months pregnant and had been taking a nap and I showed up at school in my pajamas with bed head.
I let you eat crappy cafeteria food for dinner every night while your brother was in the hospital.
I kept you out too late at night and let you miss naps.
I let your feeding pump go off for hours after it was done because I was so tired I fell asleep,and never heard it.
I forgot to give you your medicine. On time. Every day.
I didn't make it to every practice, game, concert, choir performance, awards ceremony or class party.
I yelled and lost my temper. And yelled some more.

I hope you realize that those events I missed while at work I hated to miss, and made sure your Dad or another family member was there standing in for me.
I hope you realize my absence was because I was at work, earning money to feed and clothe and house you.
That feeding you from a gas station is never as bad as not feeding you at all.
That I would rather sit at home and watch movies with all of you in my bed than go out with my friends.
That every time I attend a game or meet or concert or any event you are in that I cry. I cry tears of pure pride and joy.
That when you aren't home with me, I worry about where you are and who you are with.
I worry if I taught you right from wrong and that you make the right decision. Or if you aren't sure, that you are never afraid to ask me.
That I wish I could protect you from mean words and hateful people, but that I can't stop what other people will say or do. I can only hope I have taught you better than to do that to others.
That your heart will never be broken, but when it is, I want you to know you can cry on my shoulder, in my arms, no matter how old you are.
I wish I could shield you from sick siblings with life threatening illnesses and multiple surgeries, and a Mom with cancer, but know that it was your love and sweet faces that helped me get through those tough times.
That being the bigger person and saying your sorry doesn't make you weak. But that sometimes some people don't even deserve that.
That I've taught you who to walk away from, and who to keep in your life.
That I've taught you to stand up and defend those who can't defend themselves.
I hope that through all the mistakes I've made, that you never question my love for you.
That we are all human. None of us are perfect.
That I never wanted you to be the prettiest, smartest, most athletic.
I want you to do your best with what you were given and to be kind and compassionate.
To always be the nice kid. Never the mean one.
That the time I spend with you means more to me than the things I can give you.
And I know we won't always have that time, or that you won't want to spend it with me. And that's ok too, because Mommies need a break every now and then also.
I hope that I have lead by example, but that you take with you the lessons I learned from my mistakes too.

I hope you someday have kids as wonderful as yourselves, and know that along the way mistakes will be made. And it will all be ok. And I will always be there for you when you're not sure.

Happy Mother's Day to all the influential Mothers in my life, because you are who made me the Mother I am today.
To all my Sisters, Cousins, Aunts, Friends and those Mothers I've never met in person but share common bonds with-I hope your day was as fabulous as you are. Because you deserve it.

*yes-I'm in my Pjs on Mothers Day in this pic. Why? Cause I can be. Welcome to our crazy life.

Frustration

A week from tonight, I am supposed to be going back to work. If I still have drains in, I'm not sure that's gonna happen. Yep, drains still in. And putting out about 50cc per 24 hour period. In order to get them pulled, they have to be less than 30cc/24 hr for 2 days minimum. Ugh. And they hurt. And the skin around them is destroyed from the tape I've been using. Tonight I finally got all the excess sticky off with warm water, my fave Zum soap, a little Argan Oil, and rubbing. Oh, and help from my darling husband because I can't reach the drain site on my left-it's more posterior than the one on the right.
As far as my scars look, they look awesome! Dr B went right back in through my mastectomy scars, but sealed them with internal dissolving sutures and glue on the outside. Some of the glue is still on the scars, and kind of scabby, but overall look pretty good. The expanders she was able to get in are 550cc sized. Since I started with 50cc, and got 30cc more injected last week, I have 80/550. I am going back this Thursday for another fill, because she is hoping by filling, we will push any excess fluid out by giving it less room to accumulate. Then I can do every week, or every other week for fills. For my 'fill friends'-man the muscle spasms are terrible! I'm still having a really hard time lying down-like to sleep-but I'm hoping that is attributed right now to still having two drains in?? Just a little frustrated, hoping I would feel much better by now. Ive had a couple of crying days, and hate feeling that way. Brian feels bad because there is nothing he can do to make it better, and the kids get upset and worried. I hate pity parties, but have been in kind of a funk the last few days. My nurse seems to think I may be doing too much-thus the pain and continued drainage......hmmmm, me, do too much??

On a good note, Ethan's new PCA-Personal Care Assistant started last week, and has been wonderful! She has accompanied me to a few of his appointments, and especially right now, does all the lifting for me! It is nice not to have to have Brian take a day off just to help me. His PCA's name is Denise, and she lives about 3 minutes from us. Her availability is primarily days, so we have another gal to meet who can help us out at night. Ethan seems to be getting very used to her, and she is very good with him! Thank goodness for the Lopez Waiver! We are so grateful.

Today I got to take the bald kid to his second Vital Stim appointment. This is a therapy that works on helping him to swallow more consistently. They attach two small electrodes to his neck, one on each side of his throat, and it emits a slight electrical current which 'hugs' his throat. She then gives him tastes of foods, and we watch for swallows. The thought process is that with the Vital Stim patches on, it is a little difficult to swallow, thus when off, he will find it's easier, thus do more naturally. Today he did grape sucker, hot tamale, lemon juice, and frozen applesauce. He did so well, he got to swing at the end-which he loved! He was also on the patches for 41 minutes, which is awesome! His therapist, Amy, is the Aunt of one of Hailey's friends-small, small world. I am so excited for this therapy for our little bald guy, and looking forward to positive results!!!

I did get to do dinner and drinks with some work girls on Friday, and it was nice to get dressed in clothes other than sweats or PJs and go someplace other than a doctors appointment! Thanks NKCH girls for the laughs!

Hailey's final VB tourney was last weekend, and the girls did pretty well. We went into Sunday playing for Silver, but didn't pull out the wins. A couple of the girls on the team made comments about 'playing poorly and losing on purpose so they wouldn't have to be there all weekend'. Frustrating for the girls who love the game and play with their hearts, really kind of takes the wind out of their sails. Hailey is generally known for her positive, upbeat attitude, and I didn't see it this season because most of the other girls were just so negative. I have had more than one coach, parent and even a photographer at one tourney tell me how much they love watching her play- with her constant positive attitude and expressions. Sad to see that sucked out of her this season. Oh well, live and learn. And get the hell away from the negativity!!!
Hailey was also a little nervous, as we are pretty confident the anonymous text came from one of her teammates. I can't imagine how she felt out there, playing beside someone who would do that. But she's a great kid, and did what she was supposed to do; hold her head up and be proud. However, I can say I am glad this season is over, and Hailey has decided she won't even try out with this club again next year. There are plenty out there, and she saw a couple of coaches she did some private lessons with last fall who were very interested in her still. Now that she drives, getting her to Olathe, or Shawnee or Lee's Summit won't be such an issue for practices.

Parker and Brian are hoping to hit the driving range this weekend. Doesn't look like the weather is going to cooperate. He has also mentioned he may want to run cross country next year, so he and I are going to be working on mapping some long runs. I will be riding my bicycle while he runs. He has been making himself a Nutri-bullet smoothie for breakfast every day, and been experimenting with new fruits and veggies. Today he did spinach, steel cut oats, strawberries, kiwi, apple and almond milk. He's getting pretty handy with the smoothie making-and loves them! Great way to get his fruits and veggies in!!

We are supposed to be heading to Lawrence Saturday for Hailey's sister play her Senior Day of softball at KU-please Mother Nature cut us some slack! We really want to go watch Mariah play!!
Then we are planning to swing by Overland Park on our way back in town as Jonny has a soccer tourney he will be in KC for. Again, Mother Nature has to cooperate for all of this to happen. And if I don't get to go to The west bottoms for First Fridays at my favorite shopping spots-Good Ju Ju and Bella Patina, etc, etc. I am not going to be happy!! And me in pain, with drains, and cutting out sugar-oh yeah, doing that this week also- not getting to spend hours perusing the treasures of others, might just be an ugly site.

Gotta try to sleep now in my 45 degree position propped up with 3 pillows behind me, one under each arm and a small one on my chest so I can get up and take E to his Pool Therapy tomorrow morning. But a quick shout out to my nephew Kellen, who hit a 3 run in-the-park homer tonight I got to see! Go Kellen!! We have my other nephew Taylor's games tonight-hoping he does as well!!

Happy 30th to me!

Ok so maybe 30 is about a dozen years short of the truth, but it's a nice round number, so I'm sticking with it.
Thank you all for the Birthday wishes-really made my day!
My husband is working tonight, so I celebrated with the kiddos, pizza and an awesome episode of The Voice. Brian has plans for later in the week when he's off. Or so he says...
He already promised to take me to First Fridays in the West Bottoms Shops next weekend, and I would be completely happy with just that! And a Babycakes lemon cupcake.

To all of my wonderful bald kid and Hailey supporters, I thank you from the bottom of my heart. My heart was full of joy with the responses, posts, shares, private messages, emails, phone calls and texts in regard to my last post. I read just some of them to Hailey, and they helped her immensely.
I worried maybe I overreacted with posting the text online, but as my cousin Anthony Rizzuto put it best; "Ethan is an amazing 9 year old with special needs, and is still here on earth, long after doctors told us he wouldn't be, because he needs to help us teach a lesson or two about bullying and hate." And he's right. I didn't overreact, too many people under react -or don't act at all in the face of hate. So if me bringing our incident to light, sparks one conversation between parent and child, or friend to friend, or stranger to the special needs parent looking for just one friendly face in a crowd of parents of typical kids amidst the stares and whispers, then I've done some good.
After much debate with Hailey about whether or not we would pursue forwarding this text on to school officials, she was wrought with uncertainty. I don't understand kids these days, especially little girls. Hailey was genuinely worried we would paint a target on her back and she was worried of being pegged a narc. But it was Parker who surprised me the most. He told Hailey we HAVE to defend Ethan, because he can't defend himself and if we don't do it, who will. And if standing up for him, or anyone else, when someone bullies them makes people not like you, then Too. Damn. Bad. Yep, he said it just like his mother would have. You go Parker.

I also talked to Hailey about what a strong, confident, well-liked girl she is and how she would deal with this, and move on, as that's what strong girls do. But I also explained that the person who sent this text has probably done some sort of bullying before, and will probably continue to. So what about the next time this person sends a nasty text or posts negative comments on a FB or Twitter feed about a girl or boy who lacks the self-esteem she has and God forbid feels that ending their life is easier than dealing with the bully. Could she live with that? Of course not. But it happens, too many times. We all, and I mean ALL of us, have a responsibility to stop bullying and hate and intolerance of those different than us. And as parents, we must not only do this ourselves, but lead by example for our children.

So I ask you, my personal and Internet family and friends, to make this my best birthday year ever, take just one hour of your life this year, just 60 minutes of the 525,600 minutes we will live this year and make a difference in the life of a special needs person or family. Go spend that hour of your life with a special kid, teen or young adult. Go volunteer at a Special Olympics event. Go to a school like Ethan's and spend that one hour in their classroom. Take a friend, take a family member, take your child. Most of these places and events run on shoestring budgets and rely heavily on volunteers. Heck, if you're comfortable enough, I could probably even hook you up with a family who just needs a break, a date night, but can't afford or find a provider to sit with their special child for an hour. Because believe me, if you do this, it may only be 60 minutes of your life, but you will forever be changed by the experience, I guarantee it. And if we could get teens more involved in activities like this, it would go a long way towards changing the negative attitudes associated with handicapped, "different" kids.
I know many high school kids volunteered in classrooms Ethan was in while at CCVI, how come our Northland public schools don't have the same type of program set up around here with a state school right down the street??

Maybe I should spearhead a volunteer program like this?? I'll be thinking of a catchy name and mission statement this week.
Then I'll be looking for locations and volunteers.

Like I've said before; Ethan really is just a simple little boy. In a complex body.
But aren't we all?

In regards to the text and its anonymous, blocked sender, we did speak with the Clay Co Deputies, School Resource Officers, and Administrators at Hailey's school. They have some programs already in place to help weed out the perpetrator in situations like this. Beside the fact that whoever did it is only a child, with a young mind and I'm sure a big mouth, and won't be able to resist running it at some point. If, in fact, it is someone Hailey doesn't attend school with, but maybe knows through her extracurricular activities outside of school, we have had tons of other offers of private investigative, legal help in finding this person. And all in the name of my sweet little bald kid, and beautiful, brave daughter. We will be utilizing some of these resources, and are fairly certain we will know the culprit before the end of the week.

And I have no intention of crucifying this person. We all make mistakes. And maybe, once realizing the magnitude at which these words hurt, and all negative words hurt, I can change the perspective of one kid. Cause every good thing starts with one person's good intentions. And something good has to come from all this, right?

Now excuse me while I crawl around on the floor like a jonesin' for a hit crackhead with my phone for a flashlight looking for the Dialudid bottle I just dropped that rolled into the black pit of dust and unused crap under my bed spilling my beloved pain pills everywhere. Which BTW are not much bigger than the size of a grain of rice.
Momma needs her narcotics.

Your words will NOT ruin our day

This early Sunday morning for my family was spent at the Maple Valley 5K Run, Walk, Roll in support of Ethan's school. The weather was chilly, but nice, and the sun shined down on all of the wonderful people there for the same cause. Our special kids. Special kids of this community. Kids who struggle to do the simplest things most of us take for granted. I didn't break any records, or even finish the full 5K, but one week post-op with two drains and operating on pain meds, I owe it to my son, to walk for him. Because I can, and because he can't.
My sister Kim came and walked with us, my older kids ran it together-Hailey finishing 3rd in her age bracket! My husband drug himself out of bed after working last night and getting but a few hours of sleep. It was a glorious morning.

So you can imagine my heartbreak when I read the text I am about to post here.
This text was sent to my daughter Hailey while at school on Friday. It was sent anonymously, from a blocked number. This text is disturbing. Disturbing enough that Hailey was never going to show it to us. I was perusing her Twitter site when I found it.

Stop posting photos of your pathetic little brother.
Hes bald and retarded and his teeth are messed up.
Stop asking for sympathy and prayers cause no ones going
to give you any. Just leave and don't come back.

Yeah, wow, right? I copied this verbatim, poor punctuation and all.
I have run the gamut of emotions since reading this.
Shock. Anger. Disappointment. Disgust.
I really don't know where I'm at right now with my emotions.
Somewhere between crying and wanting to find out exactly who sent this to her and go right on over to their house and punch them in the face. And their parents for obviously raising a child with no manners or moral compass.
But since I refuse to let these words bring me to tears, and I'm afraid punching someone right now would hinder my recovery and getting my drains removed this week, I will use my words.
And know this anonymous, blocked texter; I am not afraid to put my name with these words like you were too big a coward to own up to yours.
My name is Kari Rawley. My address is 1418 NE 93rd St. My cell is 816-885-9525. And my personal email is karawley03@yahoo.com. Oh, and I'm on FB as Kari Haile Rawley and
Twitter as @krawley. You want to say something about my kids, or feel the need to pick on someone, come find me. Shoot me a text and we can hook up in person, because you mistakenly just bullied a defenseless, handicapped 9 year old.

YOU-anonymous, blocked texter (sorry, it's really the nicest way I can refer to this person right now) YOU are obviously "friends" with my daughter on FB, Twitter and/or Instagram to have seen all the pictures she posts of her darling brother. No one has forced you to look at these photos of her 'retarded' brother. Are you sure you're not just a jealous stalker? Someone who clearly doesn't have the love in their life that I see when I look at all the pics of Hailey and Ethan? Did your Mommy and Daddy not hug you enough and tell you they love you enough? Because I tell my children I love them every single day, and the love in our family shows in all those pics. Or did your Mommy and Daddy not spank you enough as a child and teach you right from wrong and what hate and prejudice is and how not not to foster those terrible attributes? Or do you just think that behind anonymous, blocked texting you can act like a bad ass and spew hate? I'm sure betting you saw my daughter at some point at school on Friday and yet didn't have the guts to say any of this to her face.
Nor will you now.

But I'm calling YOU out anonymous, blocked texter. That kid you called 'retarded' is a public school student and thus protected by the same bullying laws that protect YOU from having some kid punch your lights out. And telling my daughter to 'just leave and don't come back' sure sounds like a threat. We will be forwarding this text on to school officials tomorrow. And I'm making no threats here. This is a promise. A pinky swear, on my life promise that I WILL find out who sent that text and we will have a chat. In person. Probably with school officials and law enforcement and hopefully with a counselor for YOU and your issues.

How dare YOU make my daughter feel the way she has this weekend because of your rude words? To belittle the love and affection between two siblings that I see in all her photos. YOU must be perfect and have perfect siblings in order to be so judgmental of other's physical differences. But since I know you're not, because NONE of us are, YOU must just be a sad, lonely, person with little self confidence and making fun of others makes you feel better about yourself. And I'm sure that just you, one person sent this text, but more than a few know about it, and eventually someone will dime you out. You can't have gone through life, even just 15-18 years and acted this way and not made an enemy or two. Someone who knows YOU does know this was wrong, and their conscience will get the better of them.

I don't want an apology. Or an " I didn't mean it that way". I want you to spend a whole day with this 'retarded bald kid with messed up teeth'. I want you to see how wonderful he is.
How he can make you laugh and smile just being around him. How he would never think the terrible things about you that you think about him. How he knows no hate or meanness. For you to see how proud of him we are for the things he's accomplished in his nine short years on this earth. Surely more proud than your parents are of you. How he changes people for the better.
How he makes you instantly feel better when you're having a bad day.

If you spend a day with him and don't feel any of these things, then you are a shallow, closed-minded, self absorbed, evil, disgusting, poorly raised child who doesn't deserve to breathe the same air as my children. And the sympathy and prayers I ask for will be for you.

I want you to think twice before posting something negative and derogatory about another person online. Actions have consequences. People have feelings. And though my Family will not let your words ruin us-believe me little person, I've heard worse-we will forgive you for your nastiness, but we will never forget your attack on our special boy.

In the meantime, thanks to the wonderful wide world of social media, I'm starting an Ethan photobomb marathon until you either unfriend my daughter or own up to your cowardice actions.
I will post a pic of Ethan every day, multiple times a day and tag Hailey in every single one. I have 9 years and lots of pics to shower on you. Oh, and I'm off work for two more weeks-a great time to dig out even more pics of the bald kid!!
Because for those people who really are her friends, our friends, and who love Ethan, they won't mind seeing his bald, silly grin like it clearly bothers YOU-anonymous, blocked texter.

A day to relax, finally!

I am not ashamed to admit I have not left my bedroom today except to help get the bald kid in bed at 9:30 this evening! And it felt good. So good.

Since coming home from the hospital, I feel like we've run around a lot. Bald kid appointments, my appointments, pick up meds and diapers and drop off scripts and copies of Ethan's new MO Health Net card, etc, etc. I needed a break.

Wednesday We took E to GI to visit Ms Beth and he got a new MicKey button-gastric feeds only now-rock on! He was sized down a whole size from his GJ-he's a 14F 1.2 cm. his GJ was a 16F.
We were finally able to send him back to school today with correct orders for g-feeds now and he was so happy to go back-And so were we! We are able to get all his nutritional needs in him in a day with the bolus feeds in just 5 feeds per day. Which is very nice because now he doesn't eat overnight, and we don't have to worry about feeding pump alarms in the wee hours of the morning-which miraculously I'm the only one in the household that hears anyway....

I saw Dr B at KU and she said everything looks great. They pulled my pain catheters-I asked for a refill, but no go. My drains are still putting too much out. So I'm scheduled for next Wednesday for my first fill and drain pull then. Pain not too bad still. I will have moments of complete paralysis in pain when my muscles spasm and I just have to tell myself to breathe and relax. Easier said than done when it feels like someone has a band around your chest pulling it as tight as they can. And when I do too much in a day, like dishes and laundry and stuff I'm not supposed to anyway, I really get sore. But it's better every day. I hate the drains and will be thrilled when they get pulled.

I do have to leave my bedroom tomorrow because we are meeting with a potential care assistant for Ethan in the morning. Woo-hoo! I don't want to scare her away right off, so I am going to shower and fix my crazy hair. The one we are meeting tomorrow has day and some evening availability, and could start next week! Then we have the name of another gal who can do later evenings for nights Brian and I are both at work. We are going to try to meet with her next week. We are so excited to have some help. It takes a lot of pressure off of Brian during my down time having to take care of me and Ethan. And it will allow us to attend the older kids events Ethan can't go to-like the freezing cold track meet of Parker's the other day. Or 12 hour long volleyball tournaments. And like the random day off school E has next Thursday, and I still can't lift him.

Going to try to hit the movies this weekend-got a few I want to see, so if anybody wants to see some flicks-give me a call!

We have my nephew's first communion this weekend, and I'm hoping to feel good enough to go to Saturdays mass for it since I won't have Brian to help me with the bald kid. And I move around pretty slow still. Oh dear, and Hailey will have to drive us all.....maybe I will rethink that.

5 days post-op

And not feeling too shabby.
I have an appointment with Dr Buescher tomorrow, and my On-Q pain catheters will be pulled, as the pain ball is empty-boo. Not sure if my drains will get pulled yet or not, as I still have about 80cc total output in a 24 hour period. I don't really have pain, as much as soreness. Sore like after a really kick ass chest, arms and back work-out where you can't lift your arms up afterwards! The muscles in my chest and under my arms around to my back will spasm terrible, and when it does that it hurts to even breathe normally. I end up doing my yoga deep breathing to get through it. And pop a Valium if it doesn't pass. I'm down to only a few pain pills a day and 2 Valium-one to sleep and one to get up and get ready with. I can't take any aspirin or ibuprofen or NSAIDs yet because of the increased risk of bleeding, so I pop an occasional Tylenol during the day to help.
I'm moving around really well, and being able to shower makes it so much better! I got to shower when I got home Saturday night and try to wash all the hospital funk and stickiness off me-thanks to my friend Jody. She brought me home, picked up my scripts, made me take my meds, and made me laugh. It helps she's a nurse, as she undressed and re-dressed my drain sites after my shower, and helped put the bald kid in bed. It's quite an ordeal getting both of us in bed right now, I'm so glad she was here to help.
We have been having a host of issues with Ethan's feeds, as his j port is clogged, again! We started feeding him through his gastric port last week, and trying to advance to his nutritional needs during waking hours. It's been tough, and slow. We have to be very careful to monitor his respiratory status, as he was switched to j feeds because he used to aspirate on his g feeds. Kind of scary putting him in bed after a feed in his tummy and hoping he doesn't aspirate. I end up asking Brian to go check on him a dozen times since I can't just jump out of bed right now. Tomorrow we are headed to GI to get his GJ switched out for a regular MicKey gastrostomy tube and hopefully just be done with J feeds all together!

Monday Brian took him to his first OT Vital Stim appointment to work on swallowing. This is where they place electrodes on the neck and increase electrical impulses to initiate a swallow. As we work on oral feeds with him, he has to have a better, more consistent swallow, or he could aspirate. He did awesome, and his OT is the Aunt of one of Hailey's best friends! He was on the machine for 32 minutes-which she said was awesome for his first time. He ate frozen applesauce and lemon juice. I'm going to stock up on some gummy bears, sour patch kids, hot tamales and other strong flavored foods to take to work on with him.

Ethan also got to get back in the Therapy pool today! We were so excited and nervous, as his past experiences with warm water have ended up with him in the ER due to episodes of not breathing. I got very anxious as Brian lifted him out, but he did just fine. Won't means I won't hold my breath every time. At least we are super close to the ER if needed....

E also got his new glasses and hearing aides this week. He looks so sharp! And it's funny to see him look around with his glasses on-he was really, really nearsighted! And he's been talking like a crazy man since he's had his new aides. I'm sure he will get tired of hearing my voice loud and clear real quick!

Parker ran his best 200M at his track meet on Monday-2 seconds faster! He shaved a little time off his 100M and threw a foot and half farther than his longest discus throw! We are so proud of him. Now if we can just get him to do his homework and turn it in, the world would be perfect.

Hailey had a great time at Jonny's Prom in Wichita-thank you everyone who made it possible-Dad and Teresa for getting her to Emporia and Jonny's parents for getting her back to KC Sunday. She wouldn't have been able to go without all of your help! She has one more volleyball tourney, Regionals, not this weekend, but next. Fortunately it's local.

I may need some driving help next week. Definitely some lifting help with the bald kid. Brian is back to work this weekend, and E has a few appts next week. I can't lift him at all yet and will need someone to accompany me to get him from school and take him to his OT and PT appointments. One is up North at CMH, and one is downtown. If anyone can help-shoot Brian or I a message or text. Thanks so much for everyone's help and for the dinners! Tonight was chicken and rice from Kathi Clapp-and it was delish! Not a morsel left!

Off to sleep for a few hours before appointments!

Surgery Step One, Done.

The surgery process at KU is much different than that of NKCH.
Not better. Not worse. Different.
I was Patient #30-ya know so as not to violate anyone's privacy by using their name -that HIPPA thing and all. Which I suppose might actually work had they not come right out into the waiting room of fellow surgery patient family members and given updates in front of them all. Don't get me wrong, I could care less what the person sitting next to my husband hears about me, otherwise I probably wouldn't blog to the whole world. But it seems kind of contradictory???

Anywho, pt #30 gets called back to pre-op-that's me- and imagine my surprise when standing there waiting for me is one of my oldest, dearest, best friends from X-ray school! My friend Keely, whom I can only describe as one of the most upbeat, fun, loveliest people I know was standing there with a big hug for me! I haven't seen Keely in years, though we've somewhat kept in touch through FB. She and I go waaaaay back-like 23 years back-and have our fair share of crazy Westport, Lakeside, Bethany Medical Center memories. It really made my morning to see her and chat with her about our lives and kids while being worked up for my surgery. Love you Keely Rae-we have to get together now, and I don't mean while I'm all hopped up pain meds!!

So, change into gown, get IV started-one stick yeah, chat with nurse anesthetist, anesthesiologist, get marked on by Dr Buescher, get my lovely surgical cap on and away I go. The pre-op area was full of hustle and bustle, lots of chatting and smiling and so many people. I wonder if I often forget how many people actually work on the day shift since I'm so accustomed to a skeleton crew at night. It was nice, kept my mind off the pounding headache I had and helped me to ignore my rumbling, hungry tummy.
I got me a little Fentanyl and Versed on the way to the surgical suite, and sure thought I would go right out. But I was awake and moved over on the table and the last thing I remember was trying to move the mask off my face as the Dr was saying "take some deep breaths now Kari"

The next part was not so pretty. Apparently I did not wake from the anesthesia very well. At all.
So poorly in fact that I extubated myself, began thrashing around and upon nearly kicking the plastics Fellow, they put me right back down. Fast. My fellow CMH peeps know exactly what I'm describing. Many a times we wrestled with a little one waking from sedation. And I spent an hour wrestling with my bald kid after his ear tube removal. I vaguely remember describing him as a howler monkey on crack. And red heads are the worst. Even strawberry blondes!
So, during my exorcist-like awakening, I caused some bleeding in my surgical site and when my right drain started putting out 100+ ml every half hour, Dr Buescher was worried she may have to take me back into the OR to fix it. Fortunately she did not, it just got me 5 hours in PACU with an amazing nurse Meghann, and an overnight stay. Oh, and lots more Dilaudid. I was so schnockered, I was unable to open my eyes, but communicated to the nurse with thumbs up and thumbs down hand signals. I guess I kept asking what time it was too, like a dozen times, because Meghann said she finally asked me if I had somewhere I needed to be and I told her yes and then went right out again.
Finally the drainage slowed down and Dr Buescher and the Plastics Fellow-wish I could remember her name-she was lovely too, came to tell the finally awake me that I need to tell them how horribly I awoke for next time. And for my safety. And theirs. Dr B is military trained, and said she saw lots of young soldiers come out of anesthesia the same way. Something to do with a fighting, feisty attitude when personal control is taken away. Oh and stubbornness. Hmmmm.......

So, I'm of course awake in room 5114 because this is my normal awake time. Oh, no because I got a roommate at 11pm! Yep, shared, small room. And bathroom. A least I'm the only one getting up to pee-my roommate is snoozing marvelously while I listen to her IV beeping, breathing machine, RT checks, lab draws, vitals checks every two hours, drain emptying and foley emptying noise all while divided by that privacy ensuring paper curtain. Again with the HIPPA thing? Defeating the purpose, maybe?

Sarah Mills, I thought you were gonna hook me up with private penthouse suite, complete with mini-bar and personal masseuse?? And for some reason I didn't get a wine list with my food service menu. What's that all about?

But, I hear the Plastics Team rounds pretty darn early around here. And since my drain output is down to about 10ml on the left and 30ml on the right every 4 hours, I ought to get cut loose! They are being a little stingy with the pain meds, I only get 2mg of Dilaudid every 2 hours, they held the Toradol for now until the bleeding was controlled so as not to make it any worse. I don't have much swelling, which is surprising because Dr B said I had almost no scar tissue, but that also meant very little stretchy skin. She said she hurt me pretty good getting the expander under my pectoral muscle, and was only able to get 50cc's of saline in each one. And I feel it. Like an elephant standing on my chest. Hurts to take a deep breath, but not unbearable-the worst I've been was a 7 out of 10. Most often a 4, and can easily tolerate a 4. I do have the On-Q pain catheters in, one on each side connecting to a pain ball distributing 4ml/hour of Bupivacaine-numbing medicine. I don't want to imagine how I would feel without the On-Q. Pretty fancy, schmancy device.

Brian and my Mom hung out with me all day, then Brian went home to check on the boys and go to his Fraternity get together. So Mom and Carissa hung with me later, even while I napped! Funny thing, the night nurse asked if Carissa and I are sisters! We used to get that a lot when we worked together at Mercy. Even though she's not, she's been like a sister to me for years, and I wouldn't trade her for the world. She's been there for me and my family without missing a beat! Love you sister friend! Ooh, makes me think of sister wives, maybe sister bestie is better.

Oh, and the bald kid's GJ clogged off again last night! Argh! I am so damn frustrated with this thing. He went all day with almost no food, because although his feeding pump never beeped off, it was flowing extremely slow. He should have received 770ml but only got about 100ml. Looks like these next three weeks I'm off we are going to be trying to go back to bolus gastric feeds again. He needs to start developing a hunger sensation anyway since we are going to be starting with OT this week working on swallowing and taking foods orally. Oh, and he has an ABR test-special hearing test- and gets his new hearing aides this week. AND he gets to get back in the pool Tuesday for pool therapy! His new glasses should be in this week, AND we got bumped to three years for his next Orthopedic visit with Dr Schwend! His scoliosis is gone-yep gone! His spinal curve that was 20 degrees is now 13-so no longer considered scoliosis. However, his kyphotic curve, the curve of your upper back that little old ladies get causing them to slouch, is drastically worse at 56 degrees. Dr S was worried he had tight hamstrings pulling him over, but I laid Ethan down on the table and when he immediately raised his legs straight up in the air, back almost to his head, Dr S was convinced that was not the problem. Probably just his poor trunk muscle tone and long body. So three years it is, as boys typically have a growth spurt at 12. Not that Ethan does anything typical. But we will take the three year break!

He is doing well being home, I've been sneaking in and checking his sats while he's asleep and they've been holding steady at 98 with a sleeping heart rate in the 70's!!

Hailey is in Wichita for Jonny's Prom tonight, I can't wait to see the pics-I will share as soon as I get them!

Brian and Parker are going to see "42" on Sunday, which I would love to, just not gonna be ready to sit through a movie theater movie by then.
One of my other besties, Jody, is coming to take care of me today and tomorrow. Jody and I are pretty warped together, so I'm sure I will spend most of my waking hours laughing my ass off. I just wish it were going to be our 'drunk lunch' rather than nurse and patient!
My Mom is coming up to help me out too. I will definitely need my hair washed and fixed sometime today!

I'm about to doze off now in sleepy narcotic haze, and just realized how long this post was, but want to leave you with a funny story. As Brian was putting E in bed, I asked him to Face Time me so I could tell him goodnight. He was holding his iPad over the bald kid's head, and I was talking to him watching him look around for me in his room, not realizing I was the huge face in the screen in front of him, and Brian dropped the iPad right. on. his. head! Yep, he did.
Ethan looked rather shocked and just about started crying, but stopped when he realized we were laughing at him.
Parents of the century we are....