Staycation phase 2 : family style (scroll down for photos)

The four days away that Dan and I had were just wonderful... I would do it all over again in a heartbeat... thank you so much to the people who helped make it happen for us.  When I think back to last week and close my eyes I can feel my bloodpressure drop and a nice relexed sigh flows from my lips....  Good thing we built up our reserves for Phase 2!

We arrived back to the homestead on saturday and were reunited with the kiddies.   We did a unpack / repack marathon for all, loaded the van and we were ready to go after church on Sunday.  The kids and I hit Letournea and awaited daddy's arrival late in the night after he finished up with some work / church duties.

As we drove to camp, shea's first question was... "will they have a ramp for my chair"? Ahhh the concerns of a babe!

I was a bit whooped getting the kids into the cottage settled, unpacked, fed, changed, etc etc, but had a fun break as my good friend Deb and her son Ben were brave enough to come visit us and have a play date.  There are many categories of friends at this stage in life.  One main category:  the friends who are still brave enough to come hang out for play dates with the crazy kulp crew for more than half an hour!  If you are one of the brave souls in that group give yourselves a pat on the back! 

The kids were very excited to explore the new surroundings of the cottage, play on the enclosed porch, set up the "big kid bedroom" camping style, and in general, run, jump and climb.  Simon especially seemed very content and happy to be king of this new castle.  One of my favorite features was a comfy rocker, that simon liked as much as I did.  A few times a day he would come sit with me and just rock and enjoy each other.... just being still.

That is one of the necessary reasons for a staycation with the family... it is still a ton of work, there are still medical routines to perform, dishes to wash, diapers to change, meals to prepare.... but the rest of the world is not pulling on you.  You sit and enjoy each othera bit more easily.  You may be thinking about the million things that need to be done, but you are not home so you don't feel guilty about not doing them!  You can be still with each other just a bit more, play with them just a bit sillier, and breath just a little deeper some of the time.

Grandpa Button came for a fun surprise visit on monday.  The boys had long overdue haircuts.  The rec hall was explored.  The playground was played on.  The lake was admired!   Emily seemed to be the most entranced by the beauty of the water.  She asked (insisted) repeatedly to go "out out out" to the porch.  She would climb up in a chair and look out at the water over and over again.

Mommy's favorite quote of the week... "oops a doosie" from our Shea.  He used this phrase repeatedly.  I don't have the heart to tell him it's really oops a daisy...because I don't want him to change how he says it!  Too wonderful!

Surprise winner in category of "favorite toy":   The platic kitchen ladel that was transformed into a sand digger, worm finder, dirt soup stirrer!   Ahh what a young mind can do with a kitchen utensil.

Unexpected skill discovered:  my boys kind of kick butt in air hockey!  Simon has quite the arm, and scored on mommy a few times.  I loved watching him gaze intently at the way the puck hovered over the hundreds of tiny holes shooting out air.  Yes I know he was intently studying this because of his autism, but he let out a happy squeal, was good at something while having fun with it... and it was something NEW!  I love it when simon will allow a new joy to enter into his routine.

Award for best ploy:  Danielle was intent on "arresting" mom and dad, and throwing us into "jail".  Dan came up with the brilliant idea to make his prison the park bench... He could be doomed to punishment of sitting down and resting while the others played!  I married such a smart man!  He did deserve some rest after all the hauling and packing i've made him do lately!

Tuesday was honestly quite hectic... the norman rockwell of it all had to fade in the background as mom and dad figured out how to watch the gang and pack up a whole cottage, load the van, do the normal routines etc etc....and Emily was giving us a run for our money :)  We did leave a few hours early as this all became a bit overwhelming.  We did however go out for a "grand" mexican meal at Taco Bell on the way home. It was a hit for all.... especially simon...BEEF!... a kids best friend. 

So now we are home... mostly unpacked, and reality kicks back in tomorrow. No more playing hookie from school I am afraid! I am very thankful for the last few days to give us a boost during this long winter....memories were made. Hopefully the kids will be recharged and refreshed too! Now we wait for Spring!!!

 

 

 

 

 

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.