Saturday, February 17, 2018

Mini Update

The sound of silence has not been because life is uneventful, it's been a bit more like it takes both hands to dog paddle and keep our heads above water.


Nothing is huge, like the events that unfolded last week in our country.


It's just been daily hiccups and illness.  We lost a precious member of our extended family.  A bit of two steps forward and three steps back.

My Aunt Betty passed away.  My heart misses her so much.  When I went over to share with my mom...she just knew.  She knew her sister was gone.   Not being there was hard, but my mom has battled some fixable health mazes and she couldn't have handled the trip.  We ache for my cousin Eddie.  Please keep him in your prayers.


My Aunt Betty

We've battled at 3-4 day virus that weaves through us one to two at a time.  The scariest was Grace.  She has such narrow airways that I didn't sleep for three days.  She has gotten through it, but now shows possible signs of pink eye or conjunctivitis.  Now Anna and Max are sick.  It's the second time for both.  Don't get me wrong, we are thankful it's not the flu or strep, but the constant is a bit wearying.  We hesitate to bring a child to the doctor's offices unless absolutely necessary.  It's ground zero for the flu.  Tomorrow I miss my granddaughter Alessandra's first birthday, not wanting to risk exposing her.  This breaks my heart.  I know we will be hug her soon, but my grandma heart wanted to be there.  Please pray for our physical (emotional and spiritual) health with the illness and weariness accompanying it.

Please also pray for a blessed birthday for little Alessandra.



Our washing machine died and we had to wade through many phone calls to show we had a warranty. It's never been that difficult to prove before.  They said our washing machine is the car equivalent of "totaled" at only three years old, but the warranty doesn't truly cover another machine (even the same one) with even a small warranty.  We are going on a month without.  This is a total first world problem, nothing serious.  I admit we are a bit spoiled and miss it.  We appreciate a little prayer for direction in the way we should go here.

Financially we are still trying to recover from this last year.  It will be okay, but we continue to appreciate prayer in that department.  We just have hopes of finding normal and getting medical bills paid off.   Please pray for favor and blessing in the financial department if you would. 

We have to get taxes filed for ourselves and our mom, but this year it a bit more complicated and we need aid for both...which takes money that we don't quite have (smile).  Please pray God makes a clear way and we can get taxes, which is weighing on me, done.

Last, our sweet indoor kitty (Sienna) has gone missing.  Nine years ago the transmission on my mom's car (a Toyota Sienna) starting mewing.  On it we found a tiny orange fluff ball with half a tail.  He has been wonderful with each and every child under our roof.  He's the most patient surfer kitty...so chill.  He snuck out at some point when the door was opened a week ago Saturday (we believe).  He's an adventurer, but usually would stand outside the door and meow until we opened the door and let him back in.  He's only done this one time before now and came back, covered in burrs, three days later.  The weather has mostly been cold and wet.   It's now been a week.  If you feel comfortable, please pray for Sienna's return and safety.  Our kids (and we) are sad and miss him.

Sienna and Anna's Bearded Dragon
taking a nap.

We sent this to our son in the military with the note, "Even
Sienna is waiting for your call."

We have no medical news as of yet.  Right now my mom needs the focus, but hopefully in a couple weeks we will have some news.

I'm sorry updates are few and far between, but it has been one of those weird times.  Everything typically easy, has a hiccup or kink in it.  I think it was my brother that said, "Don't you feel like you're waiting for another shoe to drop...and it's a centipede's?"

That's a bit where we are at.

God is good though.  This we know.

We pray each of you can feel His presence with you right now.

Have a blessed night.



"Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us." Romans 5:3-5

Wednesday, January 24, 2018

ONLY GOD~Visit with the Nuerosurgeon

I feel like I can't do this story justice, just how big this is.  The enormity has just filled me up with awe.

People can and may dismiss this as, well...these things just happen sometimes.

We disagree.  We serve an awesome and wonderful God!

He knew.  He KNEW where we were at mentally and physically.  HE KNEW....

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Wednesdays are the hardest days to do anything for us.  This is the day we juggle more.  This is the day we have EVERYTHING going on....more than one co-op, home school, babysitting, dialysis.

This was the only day we were able to get in to the neurosurgeon.  We were not going to say no.  This day...this appointment held the results of the sedated MRI.

We knew Hope needed surgery at the base of her skull. Her x-rays made that obvious. Her discs were slipping.  Even we, the newbies to this, could see the severity in Hope's x-ray. This neurosurgeon (one of the leading....which is another God story) said he just wanted the MRI to make sure there wasn't something more extensive needed.

That brings us to this morning.  This morning was a bit chaotic.

Little mini explosions, tiny instances of defiance, washing machine isn't working and so there was a scramble for clothes...

We had multiple babysitters lined up.

Bekah, Grace, Hope, and I swung by and picked up Isabella.  (Sarah needed to head down to college.)
The entire way the babies (all sitting by each other) squealed and chatted in baby talk.  Oh, and they danced to the local Christian radio station.  (I need to get this on video.)

We drove deep into down town to a massive Children's hospital...armed with hand sanitizer and keeping our distance from anyone that even coughed once.

We checked in and waited in a large, fairly quiet, waiting room.


There were only two other children.

Of course, then there was us...and the squeaky shoes.  I had honestly forgotten I had bought them in China until last week.  Isabella has decided she LOVES them.




Imagine a forty minute wait and.... squeak squeak squeaky squeak.  I was laughing so hard and the other parents were good sports.  Our Isabella is a little busy whirlwind.

We were called into a small room with soft light blue armchairs....like the little rooms in the ICU where they call you in to talk about the seriousness of a medical situation.

The doctor came in, all chill with his gray hair and ponytail.  His bedside manner is kind and relaxed.  He looked (minus the white coat) like he should be on a surfboard.

He immediately pulled up Hope's MRI.  I get a feeling he hadn't really examined it beforehand.  He's a highly sought after doctor.  His time is (seriously) precious.

His first word's were, "Hmmmmm....this is different.  I'm going to sit down with the other doctors and go over this."  (This didn't surprise me.  We don't do typical here.)   He said this quietly several times throughout the appointment.

He stated it like he hasn't seen this before.

It's what he said next that fills me with awe and wonder.

He explained that Hope's body had compensated (his words) for the atlantoaxial instability.  There is NO pressure or narrowing of the spinal cord...NONE.  You could tell this in and of itself had surprised the doctor.  That wasn't all though.  IF the discs slip more, she STILL HAD MORE ROOM.  Her body had COMPENSATED.

HOPE DOES NOT NEED SURGERY...neither of the girls do.

He wants them back for x-rays in a year.

I wish you could have heard the doctor's voice.  It was almost like he was stumped as to how this could be.

ONLY GOD

I think he expected a bigger reaction from me.  I was straight faced.  My brain couldn't process this news.

ONLY GOD

It wasn't until we arrived in the car that the tears of joy started.  They rolled down my face like a triumphant myriad of angels sung in my heart.

ONLY GOD

We ask you to join us in praise friends, to our MIGHTY KING!!!!


"May the peoples praise you, God;

    may all the peoples praise you." Psalm 67:3

Friday, January 19, 2018

The Now

This week has been a little rough.  Tuesday night I woke up vomiting.  Wednesday was the absolute worst day for me to possibly get sick.  It's our busiest day and became the busiest the same day I got sick. 

Our washing machine is not working.  We initially thought it was the freeze here, but apparently not.  We don't currently have the funds to fix. 

We've borrowed a vacuum cleaner,  since our just gave up it's ghost. (We were gifted a carpet shampooer for which we are so very thankful!)

Our cat got an abscess on his jawline/throat.  He is our easy, loving, snuggles up next to anyone crying cat. 

My husband....my wonderful husband...is trying to keep our world together.  He working, trying to get my mom to dialysis, and generally keeping us moving forward. 

We appreciate prayer for health, that we can get fixes figured out, and for financially things to get easier again.  I'm just a bit tired (smile).  We all are.

Have a blessed day friends and a very healthy weekend!

"Rejoice in the Lord always. I will say it again: Rejoice!  Let your gentleness be evident to all. The Lord is near.  Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God."  Philippians 4:4-6

Tuesday, January 16, 2018

Grateful (Kids Medical Updates)

My mom and I sat in her dialysis  recently and had a pretty serious conversation.

My mom, if we lived in many other countries, would not be here on this earth.  Through God's blessing and medical professionals my mom is able to sit with me today.

We are grateful.

We have a date for a (prayerfully) final consult with the Nuerosurgeon before Hope's surgery for Atlantoaxial Instability (next week).  We will find out for sure if Grace has avoided the same surgery or not that day.  It's a bit of take a deep breath surgery for parents...


...but we are in a nation where we can get this surgery.  It is extremely serious.  We live in a place where our child can be taken care of.  We were also able to have THE surgeon that not everyone is able to get in to.

We are grateful.

Shriner's has called and we need to fly down there (through Miracle Flights) at the end of February.  This is just a consult so we can get an idea of when they want to do Timothy's next surgeries with the added possibility of another hip surgery at some point...

...but we are blessed to be with one of the world's specialists in Arthrogryposis.  People wait years, but he IS Timothy's doctor.  Our son will be able to walk on straight feet with his hips in his socket.

We went with the family on a special
Target trip with a  gift card we were gifted 
by a kind family member.

We are grateful.

Then we have so many mini blessings lately as well.

Timothy has turned a corner in attachment and  is making good choices.

We are grateful.

Sarah, Ivan, and Isabella have fully moved into my mom's house.  My mom is being taken care of and their beautiful little family is around the corner.


More pics from the family Target gift card trip.



We are grateful.

Ivan, Sarah, and Isabella are expecting a new gift from God (Gabriella) in May.


We are grateful.

Grace (4) has been learning to sign "I love you" (baby version) and not only did she do "love" without me showing her, BUT she SAID IT.  Our little non-verbal three and "three and half years in an orphanage" gift from God said a new word.



We are grateful.

Our precious daughter-in-law Elizabeth and granddaughter Alessandra were visiting while they waited for an appointment locally.

Another picture from
our Target trip!

We are grateful.

Our oldest son Tom (military) was accepted into the University he was hoping to get into.

We are grateful.

The teens have been able to connect with friends.

Anna, Farrah, and Hannah
Man, we love these girls!!!!

We are grateful.

Hope has been connecting more and attaching more.

We are grateful.

We are almost to the point of having our routine back and getting back to being able to go to Church.

We are grateful.

Then of course you have these two...



Our granddaughters....

Grateful...

Sometimes anxiety can mount.  Sometimes the needs can seem so big.

The hearts attitude makes a world of difference.  It's a continuous battle in this world to keep our focus exactly where it needs to be.  We are FAR from perfect...far Far FAR.  I have been in the midst of this internal battle recently.

It doesn't mean life is automatically easy, but it means we see the gift in this hard stuff.   It is hard.  I admit that.  We have to put out mini fires (said figuratively...thankfully) often it seems.

At times it's the beautiful village that surrounds us and easily remembered.  At times we have to look harder with different eyes.  Trying to hold onto gratefulness....

Thank you for joining us on this journey.

I will try to post soon with a little bit more of where we are at.

Rejoice always, pray continually, give thanks in all circumstances;for this is God’s will for you in Christ Jesus."  1 Thessalonians 5:16-18

Sunday, December 31, 2017

Wipe Out and the End of 2017

Have you ever seen the show "Wipe Out"?

Contestants walk along (kinda) innocently, to be clobbered over the head and fall into a lake of whip cream?


That's our life.  It is an everlasting adventure.  Sometimes the hits hurt, but then it's never boring.

Side note:  I admit watching this video and truly cringing and then dying laughing a couple times.  (What a way to go!)  I wish I could borrow this course for my birthday.

My mom is now home.  Our rehab experience was not good.  The actual OT, PT, and Speech Therapy were wonderful! The skilled nursing did some really dangerous things that jeopardized my mom health.  I hate even saying that part, but it was very serious.


Grace and Isabella making days a bit brighter in Rehab.



We ended up bringing mom home for in home therapy.

Mom is doing really well, but once home we had a terrifying experience (that I can't share at this point).  We are thankful for wonderful EMT's that figured out exactly what happened.  Obviously this involved 911 (serious and scary health issue).  Everyone is good though.  Mom is cognitively healed.  She sounds like mom again.  Please continue in prayer for things such as anxiety, continued improvement of her kidneys, and that the infection that keeps coming back never does.

She still has a long road of recovery, but she is recovering.  She does dialysis three times a week, but they will reevaluate that when she's been on it four months.  We pray she can come off it.  Statistically, it doesn't usually happen, but we know we have a big God and choose to pray this.

Our Christmas Eve and Christmas were not exactly as we planned, and even days after more news kept coming.

It started with Anna.  A week ago this last Wednesday she started vomiting every time she ate anything (within minutes).  There were no other symptoms...no nausea...no pain.  Anna felt great otherwise.  On day three we went to the first ER.  They didn't take it very seriously.  Her white blood cell count showed no infection.  They did a couple x-rays from the chest up and then sent her home to follow up with a GI doctor.  They gave her pills for nausea (she wasn't nauseous) and for reflux (this wasn't reflux).  The irony was that they gave her pills...and she was throwing EVERYTHING up.   On day seven of Anna throwing up all food (only being able to drink clear fluids), we were very concerned.  This all landed over Christmas weekend and getting into a specialist at the end of the year can take weeks.

Now, I need to interject here that on Christmas Eve three Marr men/young men got food poisoning.  We knew it wasn't just a stomach bug because these three were the only ones to eat a specific meat.  They were all very sick by morning, my husband the sickest. 

Pre Christmas Eve

We had some very special individuals adopt our family this year.  Through kindness and love they provided where it was a bit more difficult for us to this year.    We even had a very special visit, by a very kind man.











Christmas Eve

We didn't get a lot of pictures on Christmas Eve or Christmas.    Our adult kids (all in town..YAY! :-)) got to spend Christmas Eve with their in-laws.  We are thankful that our adult kids get loved on by two families!


Our family had some very special unexpected presents show up 
on our doorstep.  So many beautiful handmade treasures in here.  Someone
went to A LOT of work!!!!


This is Uncle Steve Clause.   Grace loved
snuggling with the soft red suit filled up by someone
she loves so dearly.  This was Grace and Hope's first 
time celebrating the birth of Jesus!


Hope's holiday (including Thanksgiving...thus holiday) tradition is crashing hard pretty
quickly.



Christmas Morning
There where huge bags of presents, gifts by those loving individuals who adopted our family.  Some gifts from Neighbors, Friends, Grandma, Uncle Steve, and Uncle Ralph...such sweet hearts went into making Christmas special for our kids.  Our children understand why we give presents at Christmas, because we are so happy Jesus was born!  They also understand giving in a greater way after the last couple of years.  Thank you to all those who blessed us this Christmas!!!!


Grace figuring out there were actually things IN the 
stocking.  Hope just had no interest this year.  She's learning each new day and 
that's enough.

Again, we did not get many pictures on Christmas.  There were MANY babies that needed love and holding!!!!


This picture of our Alessandra (Tom and Elizabeth's 
sweet gift) was so funny.  She was looking at me like, "Grandma, this is NOT where
the presents are!"  This was Alessandra's first Christmas!!!!


Little Isabella LOVED her stocking stuffers...almost as big as her!!!

Look at those eyes!!!


These were the HUGE bags of gifts for our children!

Aunt Anna and Alessandra

Gabe and Rachel were SO happy their soldier brother was home for Christmas!!!

Hope figured out there was something INSIDE the wrapping!!!!

I miss this little one so much when they are back at their duty station!!!






After all the presents were opened on Christmas..........my husband headed to the ER.

It was as we suspected...food poisoning.

Once he arrived home, I headed to a huge Children's Hospital with Anna (a trauma 1 ER).  The specialists available here are extensive.



So, lets summarize...Christmas day....many blessings from the kindness of others... and two ER visits. Most importantly love and gratefulness to our Savior!

Yup!

Anna had a blockage.  After much testing, they took care of it and gave her meds to take with a specialist follow-up.  Her whole body had very slight swelling with the blockage and she came out looking like she had lost ten pounds.  It had us pretty worried.  We are still at bit concerned and hyper-vigilant that it doesn't happen again.

Currently my husband, brother, and Max are almost fully recovered from food poisoning.  Anna is pretty recovered (mostly) from the blockage, though we will see a specialist to insure this doesn't happen again.  Sarah had a cold set into her chest as they were moving into my mom's house (to take care of her).  She's much better, but they are still settling in and learning the ropes.

Then there is every day news...for us (it seems) at least this year.  That's not said negatively...just the unexpected has become this expected this year.  (Smile)

A few days ago we received news that Timothy may have to have surgery on one of his hips (that was previously put into place).  He already had one major surgery and one minor ahead.  It also means more casting and possibly (most likely) another body cast.  In addition to Hope's neurosurgery at the base of her skull (still waiting on our appointment).

Did I mention I backed into a brick mailbox.  It won (no damage) and only a TINY dint on our bumper.  Hardly even flinched....

It's like (as my brother said) it's kind like we were waiting for the other shoe to drop...of a centipede.  This year has taken on a personality of its own (chuckle).

This is the shirt I want for our entire family (bwhahahahahaaaa).

(Amazon gets the credit for this brilliance.)

I joke, but truly will be glad when we move to another stage..a fresh start.  It's not the surgeries really, it's the unexpected hard that I would love to move past.  God is good though.  We still laugh (a lot).  We still smile.  We still play.

Hard? Yes.
Blessed? Yes.
Victory? Yes. 
We are just a bit tired here and praying for a year of rest.  We know we have medical ahead...but we actively are praying for rest (and blessing).

As I said, God is good.  It could have been so much worse.  My heart aches every day for what friends have faced this year.

This year HAS been full of blessing for us...

Alessandra....

Grace....



Hope....


We are so thankful for a new year, but recognize serious beauty came out of the last one.

GOD IS GOOD.  HIS FAITHFULNESS ENDURES.


Because of the Lord’s great love we are not consumed,

    for his compassions never fail.
23 
They are new every morning;
    great is your faithfulness.
24 
I say to myself, “The Lord is my portion;
    therefore I will wait for him.”
Lamentations 3:22-24


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

There are many blog posts...events...I still need to share from 2017, but I wanted to throw a quick update on here for all those in our blog family.

Much love from our family to yours!!!!!
(Prayer requests below...as always.)


PRAYER REQUESTS AS WE HEAD INTO THE NEW YEAR:
1. We appreciate prayer for a year of resting in God and of joy.
2.  Please pray for my friend Amy and her son's Nick and Sam as they head into a year that they never expected and is beyond hard...without her husband John (and their dad) and her son Jack (and their brother).
3. Please pray the medical ahead and surgeries ahead are uneventful and go wonderfully.  Please pray the support of medical and other professionals...that they understand our family and for support as we head forward.
4.  Please pray for financial blessing/relief.  I have specifically been praying that debt is able to be paid off...medical and otherwise.  I hate debt...sigh.
5. Please pray for health for our entire family and extended family.  We are all a bit tired and run down.
6. Please pray for relational blessings as well, that each and every one of us draw closer to God and each other.
7. Please continue to pray for my mom...her kidneys, her anxiety, and that the infection does NOT come back.

Thank you for standing with us friends! I could feel your prayers in this season of hard.  It is with a very serious heart I say thank you.

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