Hurling, and clinic update for Mr. O'Quilts...a personal post

Today's quilting picture is by Nancy...Baby quilt and doll quilt...Great job Nancy!!

 So..now we get down to the nitty gritty...The ALS clinic visit  yesterday.  Suffice it to say
It was so exhausting that I am just up now at 3 pm and Himself is still sleeping.  We totally needed the two extra caregivers that we brought.  Clinic was at 8:30 and we got there at 10:30 with all the work it took to get my darling man ready.  The feeding bag, the catheter bag, the medicine bag, the diaper bag, Hoyer lift, wrapping him for warmth as he can no longer wear anything but hospital gown, getting the wheelchair van in position, TBTG he can still drive his own motorized wheelchair with his feeble right hand.  My only job was to get the children to the buses on time as with the weather there was a 2 hour delay..even that gave me total anxiety.  Our big ALS specialist spent lovely time with us. Even our Hospice nurse came in for that visit.
He emphasized what we knew already, the military and athletes have a higher rate of ALS.  Because my darling is a tennis champ..I always thought it was the energy expended in sports or the adrenaline ..but NO...it is the injuries...which leads us to:  Hurling. My dear has some mighty fine injuries from Irish hurling.  He has a split chin and a huge indentation in his forehead, only now fully appreciated as his hair has gone..lol.. Dr.Brooks seemed to think concussions contributed..

Irish style Hurling 

American style Hurling
In America, hurling is slang for vomit.
Both words are appropriate in this situation!!!!!!!

Next, was the visit to the respiratory therapist..where he did a breathing test...FVC-forced vital capacity. Last visit in August, he blew a 66, Yesterday, he blew a 24.  This means that his breathing capacity is 24% of normal 100%.  We were quite surprised at this one.  It also means that the muscles supporting his lungs have atrophied more than we had realized..

Good news was there as well...Just gotta have some good news...In the loaner closet was a Dynovox computer speech device.  It was loaned to Mr.O'Quilts to help him communicate.  It felt like he would be getting his life back.  Just waiting now for calmness so Emily and her man can install it by his bedside.

A big thanks to Katie for taking Evan yesterday to my sister's house as he was too sick to  go to school.
A big thanks to Susan for meeting the kids at the school buses yesterday.
As soon as we were home, I had to take Evan to Urgent care...OMG..and poor Dylan got his birthday cake at 8 pm..since he is now a grown up 5...there was no complaining.
Thank you for all your patience and support as I finally got up the energy to do this post!
xxoo

Holding my breath...am I a turkey or a drama queen???

Jeeze Louize..

Another snow day tomorrow.

I can barely stand it.

 

 Morning caregiver already deciding that she may not get in tomorrow.

Dylan fell and loosened his front tooth.

Totally out of cat food.

OMG

And, tonight's caregiver called me a drama queen.

OMG
Roads already icing over and we live down two hills.

I am going to bed!!!!

(with vino tinto)

xxoo

Mama said.....

Remember, Mama said, when you feel down and out, do something nice for someone else!!

So, last night I finished Mugg's Presidents' Day sailboat block.  

American politics are depicted by stormy skies, rocky roads and presidents galore.

You can see the politicians dancing away in the sails while the rest of us bumble along.

 I cannot believe how well my dear man is doing.  Talk about stormy seas.  

I am grateful to have him around in such good shape compared to our yesterdays.

Not saying that ALS is fun, mind you....we know...no eating, no talking, no walking, etc

He is so good to everyone and a wonderful patient...

Everyone is so happy that my personality is not the one in the bed!!

On another uplifting note...

Beth went to Quiltcon

I checked out all the people she met and loved their blogs.

Living vicariously is still living you see.
A big thanks to Susan T. for volunteering to get the children on Friday while we do the big exhausting clinic

Truth or Story??

The patient is stable, but the caregiver wheezes away....more asthmatic bronchitis from stress interfering with stamina...so that is it...

Here we have the great present that came last week from Laurel in Texas..

 She somehow picked up on the fact that I am a fabric freak..so she sent this fabric hanging from her book store.

 I love it, especially the cat:) And below...tons of books for the children...
Lynsey especially is pleased that we do not have to take them back to the library.

Thank you Laurel..mucho!!

 Now, sick or not sick, we are not messing with birthdays...Lynsey's, and Dylan's and Stephanie's..all within days of each other...so...here we go..a group party! 

 Emi-Lou's cafe was open with totally from scratch cakes...so yummy. 

 Because I come from an overindulgent mother...there were three cakes...we love to party!!

Cannot leave out Granddaddy...

  Esthetically, I am not sure I even like this quilt any more. 

 That's what I get for using only one line and not being able to think

..It is not coming out as I planned...So I am messing with it. 

 I have decided that it is my quilt of strength..or the strength that I am hoping for..

Somehow like a baby comes from the stork...I watch the sky for courage.....Cotton and Steel.

.I am not crazy about the Top Hat blue border...but I just might do it anyway--Just because I can..

Hmmm and put on a colorful binding...I had planned on somber..just cannot do somber.

Or, maybe I should just bind the quilt with it as it is....

Funny how what we start with and what we end with can be so different!  In quilts as in life.

My girl ordered a sale layer cake from Missouri Star for the bicycles...she gave lucky me the houses:)

And last but not least, the cartoon from Muggs so well suited for me:

These past few days, my litany of woes grew longer and longer till I could not see the light. 

That I would get sick again was more than I could bare. 

 I decided not to share my blah blah blah with the entire world when I was so stuck.

Finally,..a better day.

My man is  planning to go to the ALS clinic on Friday for the first time since summer.As he has been bedridden for months, my main caregiver will go with us.  It will take two people besides me to get him out of the bed in the Hoyer lift, bring the Trilogy machine and the suction machine, his toileting and formula for his feeding tube...then help him drive his power wheelchair into our wheelchair van.  He now probably needs to have his head and chest belted as his core has weakened so. We will drive 30 minutes uptown Charlotte where we will see about 10 ALS specialists in a period of 6 hours..if he can last that long...He has such fatigue. We really need my sister to come with us, but someone the kids know, has to meet the school buses on Friday afternoon in case we are not back in time...

I think it will be quite a nightmare...I am anticipating total exhaustion for us all..
But who am I to say??  Stay in the day, girl...

.In preparation for this clinic, Himself had to fill out a check list..

I asked him the questions: Check what applies:

Are you...

Mostly happy, mostly down/depressed/hopeless/ more sad/ do you have loss of interest/pleasure in activities/ crabby/grumpy, irritable/angry/worried/anxious/crying/difficulty coping....etc..

.He answered: I am mostly happy...

 OMG  Let me tell you  I could have checked way more boxes just being me!!!! 

And, I am the caregiver and do not have ALS

Finally from newly 6 year old Lynsey:

Grandma, Aunt Emily thinks you  are fat, but I do not...I think you are perfect....but...

Grandma..if it were Thanksgiving and you were a turkey...you would be dead.

That is because they always take the fattest ones first..

xxoo

Lynsey Turns 6

The 16th was Lynsey's 6th birthday.  She celebrated with a joint yearly physical appointment with her brother who turns 5 in two weeks...Here they are...(before the shots, that is) 

 

Evan and Katie made the cake...Evan was so so so proud...Here they are..showing Granddaddy.

 Evan and Katie made a secret "Frozen" present..He is a proud big bro.
She is thrilled, he is thrilled, I am thrilled...win-win birthday.

Happy Birthday Lynsey!

 This morning the gift came in the form of Brandy and Katie...They took the children for the day.  I thought I was going to cry...again.
Working with my cotton and steel quilt...It certainly would have been dismal if I had stuck to only dark fabrics.
Unfortunately, I put several blocks together wrong...How could that be???  Look left side of quilt bottom four and five...The middle of the squares butt against each other.  I never knew that there was a direction to this pattern.  Oh, well there seems only  to be three or four blocks to be taken apart..not bad.

 I asked my husband if he felt despair. He said not.  I said..oh, come on...we could do despair together..
He said...Go sew:)

Like a Feather in the Wind

The O'Quilts have weathered a storm..an electrical storm, that is.

Part one...the ice storm..survived with electricity..

Part two...tomorrow black ice and snow.

Part three..single digit temperatures Thursday and Friday with nothing above freezing until Sunday.

Part four...the scariest...NO school..probably all week. OMG

The Hospice nurse came out tonight.  While she and my sister were discussing the latest developments with Himself, I stepped into my sewing room in despair.
 This weak wife did not want to cry...so I thought of Cotton and Steel.

At first I wanted this quilt to be blues and golds......

But, then these showed up...unexpected...like life...a few brights..

Life is so fleeting, I decided to include them, even though it was not my original intention...after all, they too  are Cotton and Steel.

I am trying to grasp the feather and I am trying to grasp the wind.

Accepting life on life's terms is just so difficult.

Tonight, I realized that Mr.O'Quilts is not leaning to the side due to a defective mattress.

He is leaning because of a defective body.

His core muscles have further deteriorated.

Now, because of his failing, inert body, he has the beginning of a bed sore.

Dead weight that he is, it is almost impossible to turn him...He really needs two people here

at all turning times..not possible to do that and still keep him at home.

Most folks choose independence over safety. We chose it too.

My grasp is slipping.  I can barely hold what I know to be true.

Each new level brings more grief.

I am so so grateful for those who shore me up, not letting me fall too.

Tonight it is especially my sister, Cotton and Steel.

Big Crab Grandma...again..

This morning the kids and I dropped off Muggs' Valentine sailboat block.  It sat in her mailbox until this evening. She said that her mailbox was frozen shut...I hope that does not bode poorly for the storm coming our way tonight...knock on wood.
 Evan took one look at this block and said...I wondered where my shark boxers went...
Ha ha Evan...They were a waste on you anyway...you are only 9:)

Anyway, a quilter has no qualms about theft if it will make a design work better!!

 Braving freezing rain, the boys came tonight for a visit.
We are calling it...Boy's night in!
Mr. O'Quilt just loved it.
Long time friends giving us a lift.

Sitting here going through my mother's paperwork and bank statements.  Gotta get this done while my man is still alert enough to advise me...God help me...Who would have known I would have back to back Hospice..Mom and Mr.O...seems like a nightmare..
.Jeeze Louize am I a crab.
  Guess now is not the time to stop eating chocolate and diet!!!
Maybe it is the time to go to bed???
I have called Hospice on how to handle an electrical outage with my man...they referred me to Duke Power disability page.  After filling it out, I called..
.Nope, said the lady..that is only for planned outages, not storms.
  In a storm call 911.
Then I called the fire department.  They sent our address and name to our local station who said...
In a storm call 911
So,..911 it will be..Praying that it will not be needed.
 Himself has decided that he no longer needs anyone to spend the night with him/????  What??
 Stephanie almost went home with ice storm coming and school out again tomorrow..
TBTG.I  had enough energy  left to throw a fit..so she is staying...lol
Guess my darling is stable if he starts bossing the show again...
Everything is plugged in to keep the charge...cell phones, cough assist, suction, Trilogy machine, hospital bed, electric wheelchair,etc...
We are holding on for the ride!!

The Sunday calm before the storm...

Marsala...Pantone color of the year...This collection is put together by Sew Mama Sew.
I love it and it cheers me up!!
I want it...so I made it my screen saver:)

 

The cousin birthday party yesterday inspired me to make this:

 I had not planned to make it and it was 7pm already...My daughter said...just do it..and of course I did!
Funny that I went online and to Hancocks and Quilt Patch looking for Olivia fabric for three year old Olivia.
Where did I find a 1/2 yard of it????...In my sister's stash:) lol

Charlotte is supposed to have snow tomorrow afternoon for Lynsey's 6th birthday.
She will love that....but then Monday night it is supposed to change to ice.
I will not, I will not, I will not.....
Worry that we lose our electricity and what to do with my dear man!!
Today he is stable and I should just enjoy that...should....should...
Grateful to Stephanie. our caregiver and my sister Charmaine for taking turns spending the night to care for my Mr. O'Quilts.

A Valentine point of view..

This is the first time in recent history that my darlings have been invited to a birthday party at their cousins.  They are so so so excited.  Here they are all dressed like the valentines that they are!!

Last March, my daughter bought me my favorite flowers.  We put them into my Riveriaware blue teapot.
  So happy, so lovely..Norie remembered that post...
She painted a picture of the very thing that I love so much..  How warmed is my heart...




Sunflower

"I used to pray that God would feed the hungry, or do this or that, but now I pray that he will guide me to do whatever I'm supposed to do, what I can do. I used to pray for answers, but now I'm praying for strength. I used to believe that prayer changes things, but now I know that prayer changes us and we change things."

~Mother Teresa

Voila..the awesome gift from Charlotte H.

Really...who but Charlotte would have such perfect fabric???

OMG....Irish M&Ms....I totally love it!!!

Deb came today bringing her special cookies
 (which this wonderful grandmother promptly hid from the children:) !!!
And she brought yummy bread...Best of all she brought a nice visit to my man.

Mr.O'Quilts is not sleeping well...Call is now into the Hospice nurse about his Ativan and his other issues..The feeding has had to be changed because of the dead intestinal muscle problems...
Now he has formula into his feeding tube 16 hours a day...Really???  Poor Mr. O"Quilts!!
My grip was slipping this morning..
Everything annoyed me..the children, the lady at the grocery  store, the weather...
Finally I went back to bed...kind of a waste of a day..but I kept my grip and that is a good thing!!

My  valentine is close to me. I cannot tell you how much it means to be able to sew and have him so close.
It makes such a very special Valentine's Day.

xxoo

Here We Go 'Round the Mulberry Bush, .........

As of four this afternoon...Mr. O'Quilts has intestines back working, Trilogy back working, laughing back working.
He is alert and doom and gloom has miraculously been averted for now...
All of this, of course, has Mrs. O racing for the fabric store for Valentine fabric on sale.
Let me tell you, this is a crazy world!!!

Yesterday, I called the funeral home for reservations.
Today....
Oh, Lord won't you buy me some fabric I love!!!!
xxoo

The View from the Edge

I thought I had better get my post up..  I do not want worry folks as I am worried.

This quilt has been basted forever..maybe 3 years.  Every time I ask my dear what can I do...in this hopeless situation, he whispers..."go sew"...He protects me even now and I think he likes the comfort of hearing the hum of the sewing machine so close by. 

 So, I do...I sew.  Finally free-motioned this quilt.  I am terrible at freemotion sewing.

But, as practice makes acceptable..Practice I am doing!!! The quilt still needs a binding..but here we are...a finish of some sort!

 The backing is IKEA and the show off...is Zoe..

Things are dreadful here..The intestinal muscles are shot..so he cannot have food into his peg tube.  His voice in unintelligible, his coughing is weak.  His mind is clear...but what is the use of that when you are paralyzed and have the rest of these issues..  Trying to be brave...Louise tells me that just being is a gift.  She may be right.  I think I will focus on that part.

I am going now to sit in the recliner by his bedside and take a snooze myself!!!

Thank you all for loving us.

xxoo

I grew up mostly in Phoenix, Arizona

From London town comes....Cousin Ann's flimsy...

 Cousin Ann's recent stash building:)

You  know I was raised in Phoenix, Arizona.
 So the word Phoenix is in my life anyway.
Who would know that it would play out just so many times in my world.

The Phoenix was very involved in my mother's life...She lived there some 40years....and..
She rose from the Phoenix many times...
And, now my love is doing the same thing.
The latest crisis was due to too much Ativan and Morphine..OMG, who would have known!!.
Mr.O'Quilts can no longer talk..so when we would ask if he was anxious and wanted Ativan,
he would shake his head, yes. Asking if he was struggling breathing and he would shake his head, yes.

Finally, we realized that he was asking every 4 hours, so when he completely lost speech, we scheduled it every four hours...and he slept and he slept constantly.
Though  he has stabilized down at a lower level, he is more alert, he is using his Trilogy and we are communicating with him using an alphabet board.

My daughter and I have been around the bend.
 We hired Stephanie to spend last night...$150 well worth a million dollars...as he needed help all night.
 I slept 12 hours, went out to lunch with my girl and her man, and sewed some.
..
The kids are with their cousins this weekend.
Talk about respite...wonderful.
The family is still here so we are well supported.
Phoenix...unbelievable!!
xxoo

Life on its own terms....

Ciara's favorite cat...the cat quilt made by her mommy and grandma.!!  

Here we are having a sleepover with twin cousins, Mia and Zoe!!! 

 Way to go Kinvara Irish quilting connection...Thank you Accuquilt kitty die for your help.

And Muggs has two quilts for her beach house...busy Muggs.

Friends and family are quilting away...yeah!!
Things with my darling are grim today.  His two sisters are here from Ireland and his brother Brendan from Florida..They had a great visit with Himself last night...
Then the night happened.  I was up twice with him last night moving his legs and giving doses of Morphine and Ativan..once at 2 am and once at 5..In between, of course at 4, Lynsey had a nightmare and was up at 4..and so it goes.
Today is so grim..
The energy it is taking his muscle deprived body to just breathe...is taking its toll.
  It is making him sweat like he is running a marathon...It is making him hallucinate and sleep all day.  He can nod an answer with his mask on.  He can no longer talk or write...and of course he can no longer play the piano, give his wife a hug, play sports, mow the grass, do his woodworking, do homework with the grands, read a book, do his family tree things, read Irish literature, visit with friends, receive emails...etc etc...
Oh, and did I tell you he cannot breathe...well.
Oh, my love...who would ever have guessed that this was down the pike for you.
xxoo

Tori's Quilts

Another finish...so exciting.. These quilts are for baby Tori and her dolly.

Because my children were difficult adoptions, adoption has such a soft  place in my heart.. Every time I hear a friend has adopted...I get my quilting on!! I was so excited to post these quilts that I did not bother to do the snipping nor the washing..I see that the color is not true either, though they are pale.

 

 

 

I decided that using my Cotton and Steel for these bindings was totally appropriate. 

 Tori is a fighter...She is Cotton and Steel too and so is her mother.

Check this out..

News from the NICU Miss Tori Runyon Baby Tori is One Month Old! Thank you to everyone for your love and support. Tori and I feel so blessed to have you all in our lives. Life in the NICU can be challenging, but it brings us so much comfort to know that we are so well cared for at home!  Tori is gaining weight and growing!  She is bottle feeding and may be home sooner than expected. She is up to 3lbs 15oz and 15.5 in long.  You can read more about our journey by clicking on link below Click Here     Thank you again for everything...We can't wait to get home!!!

My man has been sleeping all day long. I miss him so much, yet he is still here.

Caregivers massage his dead muscles so that they do not curl up with pain.

Last night 5 of his friends came for 40 minutes.  They talked amongst themselves so  Mr.O'Quilts did not have to exert his dwindling voice box and energy. 

 The visit was a great success.

They said that they will come back in two weeks.  Something to look forward to.

And, too..the visit of the O'Sisters and Brendan tomorrow.

xxoo