A (miserable) day full of improvements!

Although Shea had a pretty rotten day, it was in fact full of good progress.  We are still on the PICU as I write this wednesday night.

Shea's pain is still quite significant at times, but we are learning how to manage it better and use some strategies to help him relax a little.  He is finding times where he's feeling well enough to watch part of a movie, or talk a bit, or play a for a few minutes quietly.  ( I think today was a "four 1/2 smile rating" )

He is having trouble sitting up straight because the room "spins and spins and spins".  He tolerates 45 degrees ok... but vertical is pretty awful for him right now, causing him to cry and become very anxious.  I'm thinking maybe inner ear from the 12 hours face down and then another day and a half of bed rest... hoping that will start to clear up tomorrow.

The cause of the breathing problems ( and maybe the fever ) was confirmed to be atelectasis. ( small scattered patches of collapsed lung tissue )  It is one of the most common side effects of long surgeries.  He had just been under for too long and required too much IV fluid to keep his blood pressure up... It sort of flooded his system.

This has shown improvement today, they decreased his iv hydration that he's still having, and because the back brace came today he was able to spend some portions of the day at 45 degree angles, or upright with support.

His sats are doing pretty well without oxygen today if we keep him relaxed.  

The good news about the brace is that it's here, so we can not be on such strict bedrest and this is helping his medical status start to progress.  The bad news is that after using it for a day we're realizing there are quite a few size and fit tweaks that need to be made so that it's not causing pain in his ribs and pressure points that make it hard for him to take deep breaths and stay comfortable. Hopefully orthotics will be here in the first half of the day tomorrow to help make these changes in the lab.  We are cheating a bit and letting him just use the back half of the brace and monitoring his movements closely.

The fever.... is still there, but low grade on tylenol... so prayers that by tomorrow that takes a hike as well.

Foley is out...so we're back to intermittent straight cathing.  Drain tube is out as well!  We are also down to one IV instead of  2.

We've started the transition to decrease morphine, and oral pain meds have been started.  He was also upgraded off of liquid diet.

Lastly, he still has motion in his hips and knees which was a huge prayer, however they are very very weak.  I'm not too worried about this now - i'm sure it's a combination of the bedrest, the pain, surgical inflammation around the cord,  etc etc... but sure would love prayers that it is a temporary surgical side effect and atrophy, and that his nerve roots and lower cord are intact.

That about all for now, our goals for tomorrow involve getting the brace adjusted so he can tolerate more movement, working on the dizziness when upright, trying to get off the morphine, and getting off of IV fluids, and !poo!...  all 5 would be super duper.... but you know... gotta be flexible.

Many thanks for all the notes of encouragement and prayers.

PS I spoke with danielle on the phone today because i'm missing her.  She was happy as a clam at respite and really couldn't spare me too much time because she was too busy being social with her friends! 

Post Op Day One for Shea (aka Rocky)

Reporting in for our little man.  He is quite miserable today.  I think i saw three half smiles today.
For the first half of the day things were going along decently.  The arterial line was removed. Unfortunately no back brace yet...so no sitting up allowed.  They say it will be completed by tomorrow morning.  I'm looking forward to that when i wont be as nervous each time I help him change positions ( back, left, right repeat!)

Thank you to some special visitors from rookies and team grandpas / grandmas.  Also an early visit from Rose so mommy could do a fast coffee and toothbrush run to the first floor!  Shea was pretty out of it when some of you visited, but i know he loved seeing you, and that it provided him a bit of distraction from his distress.

About noon I noticed he was getting more uncomfortable ( possibly the anasthesia wearing off).... then his breathing would get rapid,  his 02 sats would drop and it was turning into a hard cycle to break.  We are keeping up with the pain meds, and at times it seemed like the anxiety and breathing was more of a problem than the pain.. We tried adding some valium to calm him and relax his breathing but didn't seem to do much, so then added oxygen and he went quickly from the 80's to mid 90's and he seemed much more relaxed after this..

I breathed a sigh of relief, and then noticed shivering...the tell tale sign, and bam - fever of 103.4. with tylenol on board.  We do have it down to 99.5 now.  It could be a typical post surgical "my body has been through the wringer" fever.  We are however doing a urinalysis, and keeping a close eye on his lungs and incision.   Depending on the course of his first tests, and how his fever trends will help us decide what action to take later today and tomorrow.  Whatever the case, really hoping to get sitting and moving a bit more tomorrow.

That is about all for now.  Hopeful for a quiet night.  Happy to get a few minutes of lovin' in with emily today.  Missing my Simon and Danielle... As always thank you for checking in and for all the prayers...

A long 12 hours for little man

Shea reported in for surgery at 6 am monday.  He was very nervous and anxious about the whole ordeal, but knowing that presents would be in the near future helped him find a silver lining.

They did let me go back to the OR with him until he went off to sleep at 7:40.  An initial stall occurred as he spent the first two and a half hours under anesthesia while the team combated problems with inserting, iv's, arterial lines etc.

The incision was made at 10:06.  Dr Sanders worked meticulously on shea until 8 pm monday night. Little Man was in surgery for just over 12 hours, with about 10 of that being the spinal ortho work.

A few reasons the surgery doubled in time from initial estimates:
-  Dr Sanders discovered the deformed portions of vertebrae he needed to remove were more cartilage like than bone like, and removing it was more risky and time consuming.
-  When an ideal full alignment correction was made Shea's spinal cord would lose electric signal to his lower body (likely because his cord has never been completely straight and doing so caused too much stretch or tension on the nerve fibers)  It was decided that some amount of curvature would be left to keep the spinal cord functioning well.  Dr S reports he is still very happy with the new position of the spine, and the integrity of the fusion

Shea was in recovery until 1130 pm, and then transferred to the PICU.  His pain is under pretty good control, and for the most part his vitals are quite stable.  His neuro checks are still good.

It looks like there is a chance his back brace won't be ready until tomorrow because of how very late it was last night after surgery when he could finally be measured for it.  Fingers crossed... if it did come today he could start to sit up and be visited by PT,... and that would help get bowels and internal "stuff" ( vague highly technical term) moving better and help with pressure relief/skin integrity, but for now we are still allowed to re position him from left to right side lying every 2 hours.

For today, he will be allowed to start liquids, juice etc, and hopefully the arterial line can be removed. Everything else will likely stay put for now.

Thank you a million times over for all the cover we have had in prayer.   I am so pleased with how well he's doing so far.

Confounding the Wise...

A quick update from the homefront.  We're all very proud of daddy / hubby who has finally finally finished and published his book!  It's a bit, no a lot strange to see a book floating around that has photos of my family in it and strands of our journey and the story of family, adoption, special needs and surviving / thriving at this life woven through it.  I tend to like a computer screen between myself and the stories i tell.... so this was all a bit akward and different for this mom who likes to stay under the radar so to speak. At the same time it is exciting to have something to chronicle our crazy life to hold onto tangibly.  Also, there is hope that it will fall into the hands of people who need humor, encouragement or a seed planted to take the next step...

At the very least it warms my heart to see Danielle carry it around the house every day, and proudly point out her picture on the cover. Thank you to everyone who came out to the Pieters Life Center last week... it was a night to remember.

Tonight I'm lacking a lengthy blog, or any comical stories...but would covet any coverage in prayer as the adventure of life has proven to be ... well... very adventerous these last few months :)

We would love prayers for
- our house to remain illness free as we prepare shea physically and mentally for his spinal surgery coming up in early june, and the healing and rehabilitation that will follow
- for the health of near and dear family members fighting the fight
-for wisdom, encouragement and passion for dan as he pastors the church
-for patience and appreciation of each moment as parents to our kiddos
-protection for shea and i as we travel with his team to NJ for regional competitions...the last hoorah the 3 days before surgery before he dons his spiffy new back brace for 3 months
-dan's mom as she prepares to put her house on the market.
-for each of our children to grow strong in physical and mental health, in faith and in character

As always we appreciate your helps, concern and prayers... until next time.... - The "Kulprits"

thanks to the folks who have asked how to purchase a copy, it is currently on amazon and barnes and nobles for online sale.  Or contact us directly if local .... 

Helping the woman who saved simon's life...literally.

As Simon's parents we did not "save simon's life", or even "rescue" him as many people often say.

No, God put another person in that role.  A villager found him in the snowy woods and brought him to the police station.  That was the first time our son's life was saved.

Later, simon was sent to the wellfare institute ... not to live, but literally to die.  Simon had no opening for his waste to leave his body.  Normally this would surgically be corrected immediately to save a newborns life.  Not the case for simon... he was sent to the wellfare institute to struggle for a few days and then cease to take breaths.

The woman who was used by God to save MY SON's life is named Joyce Hill.

She is a British doctor, who discovered my simon and his deformity.  Without getting permission, processing paperwork or weighing the risk she took simon from the wellfare institute and with only hours to spare arranged for the surgery that would save his life.

I did not resuce him.... she did.  She literally saved simon's life....

Joyce and her husband Robin have saved countless children.  With a heavy heart i read as they sent our an urgent plea today.  Here is some of it....

I am going to help... but my help will not make a dent.  I need your help also.  If you could honor simon by helping the Hill's we would be very very grateful.  I would also like to ask you to help me spread the word.  I can reach a few hundred... could each of you reach another group as well?

I think of my son and what his fate would have been without this ministry.... I shudder.  Please read and take action.

Click here to see Robin and Joyce Hill's ministry  please go to this link to help...

Dear friends and supporters
 
Over the last few months there has been a big fall in support for the Beijing Center of New Hope Foundation and we have found ourselves in a position that means we have to reduce costs dramatically.
 
This means we have had to relocate 14 of our babies to other of our care centres in Henan. These centres are fully supported by our partners Show Hope so the baby’s long term care is assured, also 4 babies close to adoption back to their CWI.
This allows us to let 30 nannies go this month, we will need to reduce further if more funding does not come in for Beijing Center.
 
The situation today is that we need US$200,000 to pay outstanding bills and this month’s staff salaries Going on to the future we need to see at least 3 months running cost ($150,000) in our account to remain viable.  So totally we needUS$350,000 as soon as possible.
 
 This has been a very difficult decision to make but we are putting the wellbeing of the babies currently in our care, as our top priority. No babies who still need medical or surgical care will be returned to their orphanages. Many will be relocated to our centers in Henan which are located within the orphanages but they will still be in our care. We are hoping that many will be adopted as soon as possible but this is not within our control.
We began this work 15 years ago when we felt called by God to do so. We have trusted Him in everything that we have done and we continue to trust Him at this difficult time. We need to exercise wisdom as we carry on with this work and this is what we have to do now. We see the future as a smaller but financially stable Beijing Center, as this is where we are recognized and registered by the Chinese government. For all our other centers to continue to function, we need to keep our Beijing center open.
We have deeply appreciate all the support and friendship that we have received from you. Perhaps, over the years, we have taken on too much in our desire to help as many babies as possible.
 
Looking forward to seeing what is the next step for New Hope Foundation.
 
Robin & Joyce Hill
Founders New Hope Foundation.

A penny for my thoughts

Tonight for my belated bday present my good friend Joey took me to see "The Drop Box".  Guess my friend knows me :)  She has a special family bursting at the seams, partially grown through adoption as well.  My mind is a whirl with processing and recapping now that i sat through this powerful film.

http://www.thedropboxfilm.com/



Take home ponderings...

My children are beautiful reminders of the sanctity of life, and God has a purpose for each of them through their abilities and their disabilities, even when they are spilling milk and dumping glitter. :)

Watching helps me to get my mind off the daily frustrations and challenges...and  wonder why am i having such a hard time managing all of this...this couple does much more with much less.  Lord give me their stamina and drive.

For our family who is "all filled up, and a bit tapped out" right now...this gives me a boost and encouragement to take on tomorrow with a new joy and perspective

Realization: it's a good thing dan and i are always refreshed on opposite days, because if we were ever refreshed on the same day we might bring another one home!

Powerful quote: in the USA if one family out of every 3 churches in the states adopted a foster child, there would be no more children in the system.

Everyone can do SOMETHING... adopt..if not adoption then support...prayer, financial help, adoptive family support, supplies, advocacy, etc etc... no one is unable to support the orphan crisis...so it really boils down to "do you have a heart for the persecuted child or not?

Made me reflect - the lee's home was more cluttered and chaotic than mine is...and no one cared about that...they cared about their work and their heart...wish i could remember that more often.  And...he certainly had less square footage per person than we do.

Makes me angry- when some one wants to act to bring one of these children into a family there is so much red tape and financial strain required by our governments.  I see red when i think of how many more people might adopt if it didn't take so much courage to just get the child into your arms. stuckdocumentary.com  ( you can stream "stuck" on netflix too)

A new role model - this husband and wife have taken on much more than we have, are much older, with health starting to fail...I will think of them when i feel overwhelmed and try to strive to their level of faith and service.

So those are my thoughts and i'm stickin' to em.  take them or leave them...hopefully a few will be picked up and ran with.  Hopefully in a couple of days when i'm frazzled i will think back on this and remember the peace i have tonight...( as my children lay in bed sleeping, and painted green by their dad for st patty's day)

Here are a couple that are near and dear to me... would you consider helping?  no pressure...well yeah...lots of pressure actually :)  Thank you...

1) this is a family in our neck of the woods working diligently on bringing home an older hard to place child...they need our help.

http://www.gofundme.com/jerrysarahadoption


2) friend request Joanna Penny on facebook, https://www.facebook.com/joanna.penny1?fref=ts&ref=br_tf

Ask her how you can support her adoption,  and tell her pesky liz sent you.  This warrior mamma raised big big money advocating for shea, and making it possible for us to bring him home...help us pay her back!


3) this link has a handful of children who don't have much time before they age out and will be unadoptable forever.  they need a loving family and all have grants of over 20,000 $ !!!.  advocate for them please...pray for them... bring them home...

http://reecesrainbow.org/category/movingmountains/sizeable-grants-20000

4) look over pastor and mrs lee's work and read how you can help...

http://www.thedropboxfilm.com

Pretty Please?????

wishing the groundhog could have a do over...

There are so many things to write about, that it's all a mish mash of spahgetti like thoughts twirling around in my head.  I really have no idea how to get it all down in blog form in an interesting way.   Writers block has been my companion recently.  I've had the urge to write...but the words have not flowed. So to encourage you to read, the bribery photos are at the end of the post today...

I think the writing cells in my brain have frozen because of our long, cold, shivery, you've got to be kidding me more snow, type of winter we've had here.

This mom is praying for the thaw, praying for the spring breeze, for the green to pop up through the white, to see my first spring buds...   This mom can't wait for the back yard to be open for service!

Many things are in that stage for us right now... about to happen, almost here, but not quite yet. Dan's book is almost published.  The artist previously known as shirtless Santa / bouncer / butler will be getting a moment of face time on GMA.  I have to be creative and find a way to ensure my monday morning patient just happens to be watching TV at that moment... hint hint if anyone can record this.

CSE meetings are about to happen...nervous, and relaxed about this all at the same time.  Shea's nearing the end of second grade and will be moving to a new building next year.  I'm especially anxious for Spring to come for my danielle...she has decided movies are her favorite past time and turning the television off as we strive to do can send her into quite the tizzy.  She wanders the house like our shadow when the boob tube is banished.  I would love to find her a hobby that she would spend time attending to.... whoever suggests the winning idea will be rewarded well.

Simon has adopted a practice of sneaking into our bed almost every night...he is sprouting up... and continues to be sneaky about how much intelligence he has in that noggin of his.  He is my lover boy, unexpectedly planting a wet one on my face, or patting my head and and cuddling up.  Actually all of my children are cuddlers.... that's a bonus i can always look forward to at the end of a cold, exhausting day.

It's been a year now since Dan's father passed away as well.  Not too many days ever pass without little miss emily talking about "my grandpa in heaven".  Our emily is growing quickly, learning words and concepts that leave me forgetting she's only 3 old!  This little lady is certainly her father's daughter. She currently composes musical numbers and choreographs dance routines on a daily basis. Emily also makes sure she doesn't get lost in the shuffle in many endearing ways and also in some "not so endearing" ways too.  She is a 3 year old curly headed joy, and a practice in patience each day.

Also with the positive type of anticipation of spring time comes a nervous / "lets get this done and over with" kind of anticipation for Shea's immediate future.  Soon we will be assigned his surgery date.  A few more lab tests are to be run this week to make sure his nutrician is in tip top shape so that his bones can heal well after the surgery is completed.  We unexpectedly and suddenly discovered a severe spinal curvature and kyphosis that is causing him some discomfort.  The bigger problem is that we found a handful of his thoracic vertebrae are deformed, and one in particular is causing big issues. This problematic vertebrae had been "holding it's own" so to speak when shea was smaller, but now that he's growing this section can't do it's job anymore and is allowing a collapse of sorts above it.  We need to protect the spinal cord which is currently herniating out of the spinal canal.

 His spinal cord is not "sick" up in this region yet, but it would be risky not to take care of this issue.  He does have quite a bit of hip movement that helps him to be mobile and function... if the spinal cord began to "get sick" in this higher region, shea could loose those abilities.  This problematic vertebrae will be removed, and then the segments above and below will be fused.  In the long run he shouldn't have any permanent loss of function or restrictions... but he will need to wear a
back brace for 3 months post op and will have lots of restriction during this time frame.  Prayers would be appreciated for our guy.  Not just prayers for the surgery and the recovery and his protection...but prayers for his spirit, his attitude and his outlook on life.  This kid has faced more in his 8 years than many full grown adults will face in their whole life.. he's a fighter, but you can see lately it's all taking a toll on his spirit.  Shea needs spring to come too!

Signing off for now.  We appreciate you taking the time to read our updates... and hope that spring will come for all of you very soon as well.