Tuesday: Hope and Light, Sorrow and Struggle

It is a rainy grey day here;
last night was snow
and Mr. Husband and I dreamed of a
snow day for him
but it was not to be so.
*
I have lots of lights on
to fight the grey.

To me the above icons are both
wedding icons;
Mr. Husband was given the wedding icon
a few years ago;
the St. Phanourios icon is mine,
moved for Lent;
over half a year since we were married on his day.

I changed my Christ icon for Lent.

Progress continues on scarf.

Noah continues to struggle greatly,
as I have posted.

Lots of oil and lampadas...
either needing to be refilled or re-lit.

I am reading more of the book on St. Luke

I am going to start reading this book soon;
a small book;
St. Ephraim and Lent...
We got it at the conference in February
and Mr. Husband agreed that it was
a good first-day-of-Lent book.
I have a kind husband.

Tuesday flower watering.

I am dreaming of baking my
orange cranberry bread
but with lemon.
Maybe tomorrow?
*
I am more than ready to get back to things.

 

We live in hope
in the midst of struggle and sorrow
yet we live in hope.

Noah

Please pray for Noah
*
Latest Facebook post:

Dr. B's office just called. Noah's CT showed extremely serious changes

in his bladder and a very serious bladder infection around the bladder
wall (I think OUTside the bladder wall, but not sure if I have the
details right). He is being admitted to Columbia via 911 ambulance in
a little while. I am beyond heartsick and ready to cry . . . after all
of this on-again, off-again drama, I can not believe that we have
something this serious going on.

Another Day in November

Please keep praying for Noah.
He is really struggling
and needs our prayers...

 

I am going into NYC tomorrow.
I sometimes love
and sometimes am overwhelmed
by the City.
However,
I am feeling a renewed hopefulness
and know in time that
this will all be
as they say
old hat
and I will be at home.
*
Or at least more at home...
one can alway hope...
*
After all,
the books I read about NYC always
spoke somehow of home to me
so there is hope to be had.
*
Wish me luck or whatever you
want to say the Orthodox equivalent is
and say a prayer
as I am also determined to go to
try out that pool
and begin to make a routine for myself...
*
One step at a time...
*
Oh, and can I mention that
Mr. Husband and I just finished reading
the Hobbit.
And that I am really very glad
to be married to Mr. Husband?
I may be in a lot of transition but it is worth it all
to be with the man I married.
*
Life has many challenges
but God is with us
He will not abandon us.
He is gentle, patient and kind
and is with us
waiting for us,
for our prayers
for our repentance
for us to turn to Him for help
comfort, solace and protection.
Oh for us to remember our Lord's
love for us...

Noah is very ill

Noah is very ill.
Please pray for him.
Lord have mercy
Lord have mercy
Lord have mercy.

Prayers and Request For Noah

Kate's latest FB update has her
quite concerned for Noah
as he is not waking up much at present.
She asks esp. for prayers for
protection for him.

Here's an earlier request from Kate that
she put on FB and her blog:


From Kate's blog (Noah's Mom):

Longest shot ever


by Kate

I need a huge favor. Seriously, a HUGE favor - miracle level stuff. :-) We've been praying for a way to get an iPad2 for Noah so he can do Facetime with his best friend (now lives in England) and with other mito kids. He feels very isolated and like no one else is like him.

We sometimes shop at No More Rack, and they are having a contest - make a video and see how many UNIQUE views you can get. It's not a matter of getting the most views to win - ANYONE who gets 60,000 unique views gets an iPad2. We know it is a seriously long shot, but the children made a cute, ultra-cheesy video for the contest. You can see it here: http://www.youtube.com/watch?v=a7nzWMELdswhttp://www.youtube.com/watch?v=a7nzWMELdsw

I know that people don't usually like to get onboard with contests like this, but if we can get this iPad 2 for Noah, we'll donate his iPad to one of our Noah's Hands of Hope children. Just sharing this link with, well, 60,000 people will make a huge difference for 2 children. WE ONLY HAVE UNTIL MARCH 6 - like I said, it would just about take a miracle, but FB, twitter, email, and blogs can make things really take off.

Would you watch and would you share? It's only unique views, and I don't really know how youtube counts those - but sitting and refreshing won't help. Watching at home and at work might count as 2 views . . . I don't know. Best way to rack up the count is to SHARE. (And seriously - it is a cute video!)

Blessings,

Kate

Noah: prayer emergency

FB update on Noah:

Kate Estes
Jeff (Kate's husband) here. Noah's central line (broviac) came out a little over an hour ago. This is a true emergency. It has taken a while to sort out, but Noah will be admitted to the children's hospital in Columbia SC where they can put in a new dual lumen line. 911 has now been called. They will start an IV, take him to the local hospital, and that hospital will send him to Columbia. He has no access to fluids, medicine, calories/sugar, pain meds, etc. right now. He will probably have surgery tonight.

We have never been to this hospital and since Kate will be in the ambulance I will not be with them. Please pray for the paramedics, for Noah, for Kate, and for the doctors/surgeon.
Kate will update.

Thought we could all use a taste of summer

Just look at that yellow colour...

Winter sure can be a bit of a slog,

can it not?

Lots of slush on the sidewalks here

snow melting into puddles upon puddles

all to be avoided

when walking to church.

*

I am helping a friend with her paper

for school and am thrilled to be

helping her

in her very significant endeavour.

*

Um, I can feel Lent is coming;

I love Lent for it's focus

for being in church more

for standing in church with my spiritual father

praying the Canon of St. Andrew of Crete

and going to the presanctified liturgies on Fridays.

*

Lent is also a time of great temptation

and for me often a time of great personal

loss or pain.

So as much as I long for lent,

being with my church family more,

focusing my life,

giving what Fr. Thomas Hopko calls

our tithe to the church,

the tithe of the year

*

I think I need to listen/read that podcast again

(on the tithe of the year).

*

Noah continues to struggle.

*

So many need our prayers...

*

May God be our help and protection.

Prayers Requested...

Latest Facebook update from Noah's Mom Kate:

VERY bad labs today. Liver numbers are 50 times higher than they should be (they are measuring the enzymes put off by the death of liver tissue) and rocketing up fast. They were 1,100 a week ago and are 1,800 as of today. BUN is up only slightly (bad kidney number) but Noah always has a lower than normal BUN so having it elevated is significant. Bili is up a bit and there are lots of other labs that are off.

Worse of all, the MRSA is still growing out in his urine after almost 2 weeks of antibiotics, AND he is growing out another bacteria as well now. Yes, he GOT a new bladder infection while on antibiotics. Both bugs are obviously resistant to the Zyvox he is on.

The swelling continues to worsen. He doesn't look like the same child. He is still as sweet as ever, though, and he just doesn't complain. He did get teary and choked up yesterday and quietly told me that Mary Faith gets to go to birthday parties and to friends houses and he can't go to them anymore. I loved on him and told reminded him that he's been to lots of birthday parties, but he wasn't buying it - he was sad that he can't go anymore. He also pointed out that he can't play hide and seek anymore because it is too hard to walk.

I don't know how much more my heart can handle.

Please also remember my Grandma who is still recovering from her fall.
She is getting better but is still very tired and has some pain.

Noah's Foundation

Please go here to see the

foundation that Noah's family

has started in Noah's honour,

with imput from Noah.

It's very dear.

Noah continues to struggle mightly

and needs our prayers.

Noah is very sick - please pray

Latest blog update:

We are right back where we were three weeks ago today. Noah's fever has continued to climb and isn't responding to fever meds (tylenol and ibuprofen alternating every 4 hours). His fever was 104.9 the last two times we checked.

He now has some fluid in his right lung, which is where the fluid build up started last time. The difference is that last time, we gave lasix which eventually worked to pull the fluid off. He's been on lasix ever since then, and this time he's getting the fluid in spite of the lasix. I just spoke to his infusion pharmacist and he said that the other good choices for diuretics are not available IV. Unless they can find something IV that will work on this fluid, it could continue to fill his lungs.

He is making urine, but it is very dark - butterscotch colored. He is retching a LOT. He's insisting on sleeping sitting up - I've managed to put the head of his bed back just enough so that he isn't falling forward, but with every tiny adjustment back he opens his eyes and shakes his head "no." It probably helps him breathe better to be upright so we're only barely reclining him.

Any touch or movement makes him start retching again, so I don't even feel like I can climb into bed and snuggle with him. I slept on an inflatable mattress by his side all night - using the word "slept" very loosely of course.

Please go here to send Kate a word of comfort during this time.

Prayers for those in need

Noah is ill again.

Let us pray for all those who are

struggling.

May the Mother of God help, protect,

shelter and comfort.

Noah needs our prayers

Latest update on Noah

from his Mom Kate Estes via FB:

*
Nurse just came to draw Noah's labs. NO blood return from either lumen! :-( In other words, a clot or fibrin sheath is blocking his central line. Waiting to hear from the doctor. PLEASE pray.

Updates

Kate, Noah's Mom,

updated her blog on how Noah is doing.

*

It was wonderful to be at the monastery

and to have children such as Noah prayed for.

*

A small prayer request for me-

it seems that the rash I have gotten before

is back again.

Thankfully I know what to do and God willing

it subside soon.

Still I admit it is a bit of a bummer to have

return again but God is with us

and will not abandon us.

Latest on Noah

From Noah's Mom via FB:

Praising the Lord for a sweet nurse friend (she was Noah's home health nurse most of his life) who came and spent the night with him last night and did all his meds so Jeff and I could sleep. In the not-at-all-good news front, we found out today that Noah's urine is infected with MRSA. Moving to aggressive antibiotic coverage tonight and praying that this doesn't hit his bloodstream. He's allergic to some of the best antibiotics for this infection, unfortunately. In addition to the regular prayer requests, please pray for sleep, rest, and peace for Noah. He has been VERY agitated for the last 20 hours or so. He cries when he's awake, he cries when he's asleep, and he only sleeps tiny bits at a time.

Noah - Fighting and Struggling

Please pray for Noah that

he will be comforted and not afraid about

leaving his family in order to

go to heaven with Jesus.

Pray for Kate and Jeff his parents for strength

and for every mercy...

His siblings, including Matthew.

For mercy - God's loving-kindness.

Please see here for the latest on Noah.

Christmas Eve, Part 2

Noah woke up today

and was sitting up in bed,

his mother Kate related to us today via FB.

Thanking God for this mercy.

It is still a very hard situation...

I called my MI Aunt,

my Mom's oldest sister,

since I had missed calling her for her birthday

and today is/would of been/was my Oma's

103 birthday.

So we are all thinking of my Oma a lot.

My first Christmas (n.c.)

without family.

I am physically exhausted from my cold but

am really hoping to make it to part of vigil

as there are special icons there of the

Mother of God.

I also hope to make it to o.c. liturgy at my church

tomorrow and dinner with my close

friends later that day.

*

The goodness is that Christ came on Christmas to be with us

no matter the pain, joy or sorrow we find ourselves in.

Christmas Eve - December 24, 2011

Today my is my Oma's 103 birthday

(I say this because she is still alive in heaven).

I am asking God to send my Oma

my love to her this day

through the Holy Spirit.

It is nice to know that we can do this...

*

I have been feeling unwell for a while

and now have a head/chest cold.

Drinking lots of tea and resting.

Don't know if I can make it to the Christmas dinners

I was to go to tomorrow.

All this is in God's hands.

*

Still praying for Noah,

no new news yet...

Lord have mercy on him

and his family.

Continued Prayers Needed

Talked to my Grandma Ruth today.

She was in a lot of pain yesterday

but is doing a bit better today.

She is on pain killers

and still sounds very tired.

Please continue to pray for her

healing.

*

And of course we are all keeping vigil for

young precious Noah...

Here's the lastest update from his Mother Kate:

Noah is very gravely sick. He is a little better than he was earlier -
this afternoon both lungs were filling with fluid and he was not
responding to lasix - was barely peeing at all, in fact. A second dose
of lasix opened the floodgates and his lungs are much better, but
we've been cautioned that this not reason to get our hopes up too
much. This could go either way right now. He could recover or he could
have only a day or two - and anything in between. We've been
surrounded and blessed by the presence of people we love quietly
streaming in and out of the house to pray and just to sit. Perhaps the
greatest blessing of the day is that this afternoon Noah surprised us
all by waking up enough to open his present from Mommy and Daddy and
his present from his brother David. It took all he had, but he did it.
Thank you all for your continued prayers.

Noah - desperate shape

from FB via Noah's Mom Kate:

Noah is sicker. He has more edema (swelling) and now has fluid in his lungs. He's vomiting and appears to be in pain. He is doing a little "barking" with each breath because his vocal cords are apparently starting to swell. We've just now jumped his pain meds up quite a bit, and phenergan, ativan, and lasix are coming. (The first two are for the nausea and the lasix should help him pee off some of this fluid.) We can and will get oxygen delivered if needed. The hospice nurse is here now and Dr. B will be coming over at some point. Dr. B is trying hard (please pray) to find a way to get him blood and/or platelets here locally - if Noah needs to be transfused (and he will soon at this rate), we can't drag him an hour and a half to Greenville to do so. We have a fairly large regional hospital a few minutes away, but they've refused to transfuse Noah even when he was healthy - they say his "needs are too overwhelming." I can't stand the thought of losing him if blood could help him get over this crisis, so please pray that we can work this out. He really can't be woken or roused at this point - may open his eyes if he vomits or retches, and has nodded his head in response to questions a few times, but then is immediately back out. ANYONE local who wants to come sit in the living room and pray is MORE than welcome - just come right in - you don't need to call or knock.

Urgent Prayer Request: Noah

URGENT - Noah is running a fever. On hold with hospice now. Lord Jesus, give him Christmas. - Kate Estes Mother of Noah's new status. Please pray!!!!

*

The doctors, labs and meds are all on their way to Noah.

*

Please pray for them.

Kate had recently updated us all on keeping Noah

at home and honouring his wish to die at home.

Asking prayers...

Lord have mercy!!! Lord have mercy, Lord have mercy!

Most Holy Theotokos save and protect!

Lord Jesus being their comfort and shield!