Pinching Myself

Why is Liz pinching herself you may ask?  She has been "childless" for over 48 hours now.  Gasp!

My wonderful husband Dan has arranged a staycation for us.  We have been looking forward to these 4 days for months and it has finally arrived.  We are incredibly appreciative to the "village" at home helping to manage the kids, "auntie Ann", grandparents Button, Carli and Ann Marie, Jeff and Joey... all a part of the plan to keep the boat afloat while we are gone.  Dan and I realized this is the first vacation we have taken since 2010 thats main purpose wasn't traveling across an ocean to add a family member to our home!

 

I have been wined and dined, took in Le Mis, a bit of shopping, a hair cut, brisk walks, naps, observed fillabusters, read, and even attended a protest rally in regards to my children.... I am enjoying myself thouroughly and am so thankful for this time to be refreshed.  Dan and I are careful though not to get too rejuvinated.... staying slightly overwhelmed and frazzled keeps us from making any silly life changes, grand plans or decisions! We have though enjoyed talks and sharing about our past, present and future....

 

It's so nice to have long uninterrupted conversations with each other, and long uninterrupted silences as well.  My devotion today reminded me to not be anxious or fearful for anything, but to trust in God, and transform those anxieties into petitions of prayer, and pledges of trust to Him. 

 

So, yet again it's been MONTHS since my last blog post.  Here are our "immensly exciting" life updates of late. 

 

Dan:  some of you may know about his new job that he started back in July.  A surprise to us, Dan was asked to interview for the position of interim pastor at the Manchester Baptist Church.  It made good sense because of the long history of church jobs and his comfort with speaking and teaching, but it was something we hadn't though about before.  It seemed like God was telling us to "go ahead".  Dan has been there now for some months, and is thouroughly enjoying his post.  Our family enjoys it as well, and we have made many new friends.  They lovingly tolerate our crazy family just like our FUMC family does.  I'm not sure though if they know about his tattoos yet.... hee hee well now they do!  Come visit us there anytime :) 

 

Mr Simon:  he had his time in district at Pal Mac, and Dan and I decided it was in his best interest to return him to Holy Childhood on our dime.  It's not easy, but it's what is best for him....we have some battles ahead of us on this topic, that I am not looking forward to, but as you know a momma will give her left arm for what she knows is right for her child...and so it goes.  He has been more vocal this month sharing some words with us we haven't heard before!  also lately he's been trying some new foods for us.  He's enjoyed wrestling with shea, and playing chase with his sisters... for him all is well in his world currently.

 

Danielle:  still growing about an inch a month!  She's going to be catching up to me soon.  She thrives when given helping jobs or nurturing tasks.  Her health has been good, except for a recent bout with flu.  Her most recent triannual ear surgery was in January.  The Kirsch Center has been working closely with us to help us address some of her mood and behaviour issues, and dare I say it outloud... the last few months have been milder.   She is a great sister, especially to emily, at times helping to keep her little sister out of trouble, and at times teaching her how to make the trouble!

 

Shea:  He certainly keeps mommy busy... between his medical needs, his extracirrics, and his social life, we stay hopping for this one!  At this time Shea is again active in his Rookies wheelchair sports team.  His hip surgery from last may has healed remarkably well, so well infact that now it is time to schedule the removal of his hardware for sometime this summer.  If the hardware isn't taken out before bone grows over the top of it, then we run into trouble, so back in we will go.  Also on the schedule are meetings with the pediatric urology team to discuss when we will start to move forward with his bladder surgeries.  He had a pretty rough february in regards to his respiratory illnesses and asthma...but is now back to his old self.  He keeps us laughing, and is booked up with birthday parties and play dates.  Does anyone want to volunteer to be his booking agent?

 

Miss Emily:  wow what a blossoming personality.  She is happy when she is making people laugh.  She is happy when she is climbing under, on and around things that she should not be.  She is happy when being chased in circles around our home by her siblings.  She is happy when she figures out how to say a new word... in general for the most part she is just happy!  and yes... LOUD.  She did get another ear infection a few weeks ago, but that too has passed.  Also, did I mention that she has her daddy completely wrapped around her little finger?

 

As for "mamma":  what is new for me?  Aside from my Physical Therapy work which I am still doing half time I pretty much just sit around eating bon bons and painting my toenails.   Just kidding, actually not too much is new.  Being the nurse / secretary / planner/ maid / equipment manager / driver / advocate / caregiver / hugger / and smoocher of my family keeps me booked from dawn till dark and then some.  Also I must mention Heath... we continue to advocate for this boy.  God has laid him on our hearts heavily.  We are feeling very called to advocate strongly for him and to keep sounding the alarms about his fate.  Please continue to help us share and to pray .... and even if you think you are not the family for him... stop and think about it again...

 

As is my custom...I have rambled on much too long, and if you are still reading and awake I commend you!  hugs to all... and see you again on this blog...."sometime"

 



Shea's Surgery - Day One

"BEFORE"

"AFTER"

We are winding down on "day one".  He was very very brave going into surgery as you can see from the "before" picture.  Shea was in for 3 hours, and the doc is pleased with the outcome on the table.  He completed the bone graft / reshaping of the acetabulum.  The femur needed to be cut, the head of the femur rotated and then reaffixed with hardware, and he did tighten the hip capsule via stitching.  Our little man is on IV antibiotics, morphine, and NSAIDS.  His hip pain is well controlled, but he's fighting a nasty headache most of the day.  I'm hoping by morning they can decrease his morphine and I'm wondering if this will help eliminate his headache.  He is cathed, and has a blood drainage tube as well.  Urine output is a bit low...so they are keeping an eye on that.  I've been told he has "things" that need to be done at 11, 1, and 6 in regards to meds and input output measures...and also we are repositioning him every 2 hours through the night.  We will be busy!  The nurses have been great so far.  A big goal for tomorrow is to have the bedrest order lifted and get him up into a chair, as well as meet with the PT to go over details of the wheelchair order, and other details.  The puppy dogs have been great for propping various body parts...and I'm sure all the other stuffed friends at home will come in handy also.  I think a shopping run to buy some body pillows and a bean bag or two will also be in our near future.  Thanks for the kind words and prayers.  Also a special request...we've been talking to shea about the fact that this surgery will help his hip to "work better" but that he will still need leg braces and his walker to ambulate.  I'm hoping he understands this...many people have innocently spoken out loud about the fact that surgery will "help shea to walk on his own" and well you know little ears take it all in!!  He woke up today and said...mommy I need to walk.  I'm hoping that was just an expression of wanting to change positions and get out of bed, not a young mind misunderstanding the big picture.... guard his little heart and soul God... I'm sure you will.  Good night all... Good bye "day one".

gearing up .... 4 days until the surgery...

Well, it's been a whirlwind of a week.  To give you a hint, even though I only work 20 hours a week, there were so many doctors appointments scheduled, that I went out see patients on memorial day in order to fit the rest in!  I'm thankful it's friday for sure. 

Now that I'm finally sitting still I think my body is vibrating... not sure if that's residual from the frenzy of activity this week, or just a side effect of all the caffiene I needed to consume today to make up for my sleep deprivation and lightening speed appointment hopping!
    
Tuesday through Friday we had a marathon of 2 pre op lab visits, pre sug ortho appnt, 2 orthotist appnts for the spica brace, a 9 month pediatrician appnt for emily, and dan making a run to rochester to pick up the spica carseat.  Fanagling (how exactly do you spell that word anyhow?) emily via stroller, equiptment, shea via wheelchair and the diaper bags, and oh yes...heavy rain!

Who needs the gym?  I've got my kids!  Also as a general update...the bunkbeds are working out great so far!  All of our fears of the shenanigans that might have broken out were of no need.  PHEW!  We caught a break -

Also...baby emily started previcid, in hopes it may improve her night time sleep.  So far we've seen an improvement of waking 2-3 times at night rather than the 3-5... so maybe this will be the ticket?

Thanks to all for your prayers... we will take every one of them!

things I ACTUALLY had to say today...

no lie.  these are actual things I had to say today...

1) danielle, stop shooting the baby or I'll have to take your gun away.

2) simon stop! pee on the grass, not on the sidewalk.  (after he pulled his wet swim diaper off at the speed of lightening)

3) Shea, please wipe that spaghetti sauce out of your belly button.

the end...

simon's angels

What a wonderful and exhausting day...

We took the kids horseback riding again today...thank you grandma and grandpa for going with me to help, while dan held down the fort with our garage sale at home.  Once home, I was spending some time with simon (in the bathroom of course!), contemplating his day at the stables...at times he seemed more interested in his cup of water than the horses, or more intrigued by the grain of the wood on the fence, than the beauty of the farm.  In my brain I sighed...and wondered to myself - does simon really benefit from being driven all the way to webster for riding, or is it more to make myself feel good about "giving him this opportunity"??  I guess simon's angels were reading my thoughts...because as I was having this mental arguement with myself simon (from the toilet of course) signed horse, and "said" -fun- with no prompting!  OK God, enough said!  Thank you for answering me so quickly.

updates on life...

- emily is officially no longer "a baby" she has transformed into "that little human" who gets into everything, and is completely mobile through the house...!!! oh dear ~

-shea informed me recently that he was going to marry a "lady with a pretty dress", and that he was going to have 3 kids, 2 girls and one boy..." this all came about because I was very very mean mamma and have not been helping him put on his pants this week... I tease him, and say...when you're a grown up I'm not driving to your house everyday to put your pants on for you... hence the "planning for the future"  good grief!  Also our little planner has presented me with a list of post surgery prizes that he should receive for being brave...boy does he know how to work the system!

-danielle was so sweet tonight as she handpicked which toy to take to bed with her... her soft china girl baby doll won this evening, it was so cute tucking the "twins" into bed.  Danielle graduated to her first "out of the coral" ride today, and enjoyed her time in the meadow.  Such a big girl.

where in the world??

If you're here for the pics...scroll down...!

Where in the world to start?  It seems as though since my feet returned to american soil my blogging muses have flown away into never never land.  Actually, my muses have just been very very busy giving birth to a child, changing diapers, contending with CSE meetings, juggling a work load outside of the home, running to doctors appnts, wiping noses and just doing life in general.  I'm hoping to "get back on the bike" so to speak.  Maybe if I can blog a few times in the next week or so it will become natural again...we will see!

So...what have we been up to?? Ahhhh nothing much in the Kulp home! Well, I certainly can't catch you up on 6 months of our crazy life in this entry...that would probably bore you to tears....so howz about a brief snippet of some of our highlights and we'll call it even?

My amore... Daniel.  We marked 8 years of marriage this week.  Yes I know we have a 9 year old daughter... but thankfully since she looks more like Jet Li than Dan or myself people don't give us the hairy eyeball about that!  I'm excited about the book he's been plugging away on.  Hopefully it will be seen to completion in the next months.  We spent a marvelous date night together this evening, thanks to mary alice poppins, who held down the fort with Simon, Shea and Danielle.  We took emily in tow...she's still quiet and cute enough to be "allowed" on our dates with us. 

My "first born".....Simon.  He is monkey boy, loving the ladders and slides at the play ground to no end.  He is having a serious love affair with water sensory seeking "ah hemm" activities lately.  We find him in the tub, in the kitchen sink, standing under the water machine on the fridge door - letting it trickle down his back.  I guess there are worse things he could be obsessed with right now!  He is thriving at SHC still, and Dan has joined me in the world of CSE meetings as we still are pleading his case.  I'm also very happy that shortly he will be examined by the pediatric dermatologists at Strong.  Standard dermatology has left us uncertain of how to help him....so I'm hopeful that possible progress can be made now.  My "fun" purchase on our date night was a book on autism interventions...and he will have to endure my experimentation over the next few weeks, now that mommy has new reading material.  If anyone has ever come across any good info on kiddos with dual diagnosis of developmental disability and autism...please share.

Mogley....aka Danielle....come on...picture her in her white undies and you have mogley from the jungle book!  She has had a whole new world opened to her as she now attends SHC as well, and has entered a community of having buddies, and jobs, and a whole new level of socialization. In this case, the CSE has been smooth sailing which we are thankful for and we pray that it will continue on.  Danielle is in love with her sister emily.  I do believe she feels a sense of ownership over her "baby doll".  Her singing voice continues to fill our minivan.   She is also the first to raise her hands up to the heavens in church.  She may be our handful on many occasions...but never the less she has a direct line to our man in the sky.

Shea...wow, the language skill are still amazing us.  He is so inquisative, trying to figure it all out.  And..the motivation...amazing...   He is learning all about cooties, and is thouroughly "grossed out" when mommy and daddy kiss.  We certainly had fun with this advantage at open house!  In literally days, his very own wheels should be here.  He is a pro at turns and spins and speed.  He had grown bigger and stronger in the last months.  Hamstrings have been waking up!  The major event on his horizen will be a left hip reconstructive surgery on june 6th.  He will be at Strong for 2-5 days, and then home, braced for 4 to 8 weeks.  Let's pray for 4 not 8!

Emily...all we need to say is that she is the cutest baby in the universe...ok sorry sorry, I'm quite biased.  She is a very happy baby, sitting, starting to crawl, and loves standing up on those legs of hers.  She has no lack of smiles and giggles for anyone in need of a pick me up.  I do believe she may be the toughest baby in the tri-county area to endure all the jiggling, slobbering, and jostling that she receives from her siblings.  And...yes, I do wish I could keep her tiny forever.   And...yes, I do wish she was even close to sleeping through the night....or even just up once or twice.  I will take any suggestions from those of you who have been there, done that.

As for me....I am quite exhausted, but happily so.  I'm certain I've never been this sleep deprived, for such and extented period of time between all 4 kids.... but I'm sure this too shall pass.  If I'm going to be deleriously tired, I suppose this is the best cause for it that I can think of.

To close... Kulp Kaboodle "look out items".  We are eternally crunched for space in our humble home, and needing to shift the kids around soon.  We are ever creative with ways to save money and try to be frugal.  As garage sale season and spring cleaning is just around the corner....we are looking for one or two small childrens dressers, bunk beds with a nice rail so simon can be on the "top shelf", and for some elves to come build an addition on to our house!  If you see any of this in your travels give us a shout out!  Also, in all seriousness, I'm looking to hire a mommy's helper for a few hours here and there to get through some spring cleaning and such.  If you have a teenager or college age that needs a few extra dollars please send them my way.

Off to bed I go.  Hopefully it won't be 6 more months before I blog again....but after how long this one has gotten my readers...(probably 3 of you left by now) might not mind!  Ta Ta for now.

a word from the kulp kids...

A handful of people have asked mom when she's going to update her blog... we don't know what is taking her so long, for goodness sakes...all she does is sit around watching grey's anatomy and eating bonbons...we basically take care of ourselves...geesh...

Anyway, since mom is taking so long to get back to her blogging, we thought we would write an entry for her and maybe she would get her act together and start posting regularly again...

After wrestling for it, we have decided to update you in chronological order...

Danielle - life is pretty (can I hold the baby?) good lately.  I've been practicing a lot with my dynavox, at home (can I hold the baby?) and at school.  I really really love my (can I hold the baby?) new sister emily ... well as long as she's not crying.  Mom says I might be transferring (can I hold the baby?) schools soon...I'll keep you (can I hold the baby?) posted on that ...we're not quite sure about all the details yet.  Ohh yeah...my ears are giving me a bit of trouble...hopefully the doc will (can I hold the baby?) figure out how to make my hearing better soon.  I'm growing like a (can I hold the baby?) weed, and right now I'm pretty fixated on helping baby doll emily...   where is that baby doll anyway?

Simon here - Mom and Dad say I have a lot of hills and valleys.  Mom was getting pretty stressed out a few weeks ago, bc she said I was having a "non verbal grumpy streak" whatever that means!!  So to help her relax I've been super duper happy and talkative for about 2 weeks now.  She won't stop telling everyone about it...geesh!  I still can't stand the feel of shoes on my feet...I'm not sure how all you shoe wearing people do it!?  I really love love love emily...she loves it when I kiss her and leave lots of slobber on her head and face.  I'm really gentle with her...but mom won't let me tote her around the house like one of my teddy bears...I don't get it??  I think mom just wants to hog up emily all to herself...ohh well, I make her smile all the time!  I think my new brother and sister may even be more interesting than the patterns in the carpet or my elmo movies... mom is still slacking so I'll let Shea fill you in...

Shea - well...I've been an American now for over 3 months and I turned 5!  Mom worries a little that I don't speak ANY Russian anymore...she's gotta chill out!  I'm rockin' kindergarten, I L O V E riding the big yellow bus.  Mom keeps taking me to all these different doctors, hopefully we'll be done with all that jazz soon.  I guess pretty soon I'm going to have some "major work done" on my teeth...then I hear I might be getting a "fixer upper" on my left hip.  I think I'm going to keep mom and dad busy for a while!  They gave me these new robot leg things...they're OK I guess...once they are on and I'm walking I like em OK...but they kind of slow me down when I'm trying to scoot away from mom on my hands and knees.  I give her heck when it's time to use them...but she keeps saying I'll like them someday!  It is pretty cool that I can walk tall with em...and I've conned them into giving me pennies when I do a good job :)  Yeah...life is pretty good!  See ya later alligator... I'm gonna grit you!

Emily - well I may not be able to talk yet...but I can write...shhh don't tell daddy.  Geeze Louise!...what a family I've been born into.  Looks like I'm gonna have to be one tough cookie!  Mom is all sad and teary cause she's going back to work part time tomorrow...but come on mom...hold it together, Daddy is going to be so much fun!  For the last 2 nights I've decided to cut mom a break and I've slept for 7 hours for her.  She seems so happy when i do that!  I just discovered these long things at the end of my body...if I kick them around alot they make my chair bounce up and down... pretty cool.  I've also started to coo, and I've managed to laugh twice.  Mom gets really silly when I do these things and calls the whole town over to see.  Weird!  Oh yeah...I've had 2 ear infections so far and I'm only stinkin' 8 weeks old (today!)  Thanks alot Simon, Shea and Danielle...I know we're supposed to share and all...but keep your cooties to yourself please.  Well I better go...don't want mom to catch me on the computer, I think I'm technically too little to be surfing the net.  Bye Bye, burp, coo!