A Message From April's Family

Just wanted you all to know that our Mom is no longer struggling...she can finally Just Breathe!!!

April May (LeJeune) Boggs of Ann Arbor passed away in her sleep on Nov. 7 after a courageous battle with Idiopathic Pulmonary Fibrosis. She is survived by her husband of 44 years, Ray Boggs, Jr, and their 3 children, Lori Boggs, Leah (Scott) Powers, and Jason (Martha) Boggs, and her 4 grandchildren. There will be a memorial service on Friday, November 11, at 2pm at St. Andrews United Church of Christ, in Dexter. In lieu of flowers, please send memorial contributions to the family or to the Pulmonary Fibrosis Foundation.

necssary losses/things we take for granted

Things we take for granted are things we do by rote. We wake up in the morning and most of us have to go to the bathroom. We do this by rote, we simply do what needs to be done and move on to the next task at hand. For me this is easier said that done. To get this done now, I must take some medicine to I can breathe and walk that 10 ft or so. Then I wait about 10 minutes before I can go to the kitchen, get my coffee and something to eat to take the balance of my medicine. Then I now go lay on my hospital bed and catch my breathe again. I am using 8 liters per minute of oxygen and the drugs and most mornings I gasp for air for 5 mins or more before I get it under control. It has taken me a while to figure this out. Last Thursday I hurt my back again. Yesterday I had an xray and sure enough the t5 vertabrae if fractured. Today I had a couple of teeth xrayed and wouldn't you know I need to have a couple pulled.

From where I sit Lung Cancer wasn't so bad.

Good Morning Family, Friends & Guest,

Everything is relevant an relatively speaking Lung Cancer was easy compared   to Pulmonary Fibrosis.  With Lung Cancer we had a treatment plan and we set about treating.  In 5 months and 9 days, poof gone.!

With IPF there is nothing to treat.  There is no known cause, so there is no known cure and no one evens knows if the heavy hitting drugs currently being used to treat to anything at all, but cause a whole host of ugly side effects.

I believe I have had another big decline in the past couple of weeks.  I am up to 8 Liter per minutes of oxygen around the clock and I was still feeling air starved.  I hate the swishing in my ears I now hear with the oxygen at this level.  It is now getting hard to eat and breathe at the same time, so I am becoming a much neater & slower eater.  That’s a bonus.

I am now back on Morphine to help with the breathlessness.  It truly does help with the breathlessness, but gives me fits in other areas.  Some loss of Bladder control, Itching all over, nano headache when I first take it.  Not to mention the awful taste.  Good news – Junior Mints take the awful taste away pronto.

Still waking up and getting up anywhere from 4:00am to 6:00am.  Wish I could sleep till at least 7:00 am, that way the days would not be so long.

I know it wasn’t to long ago when I ask others with IPF about “The Cough” As I didn’t have one.  Well, I spoke to soon as now I have a cough and I cough a lot.  Every time I get out of breath, (which happens if I walk across the room) I now have a coughing fit, which then keeps me out of breath, is a vicious circle.

Well, that should bring everyone up to date so lets talk about some fun I have had.  Ray and I went to Sleeping Bear Dunes last weekend.  I had never been.  The Northwestern Lower Peninsula of Michigan is beautiful.  Some of you have probably seen the pictures I posted on facebook.  We stayed for 2 nights, Alias we knew the weather was supposed to be chilly, however, wind never factored into our thoughts and we never dreamed they would close the senic national lake shore drive.  So really we missed a lot of the beauty.  This weekend has been beautiful and Ray took me for a ride to Gallup Park and the river.  Then to Bill Drive in for a hotdog.  It was a nice day with my favorite caregiver, who is really very kind to me and most helpful.  I love you Ray Boggs.

Jillian Elanor's Page

Oh My What Big Eyes you have!
Just Beautiful

Jillian has wild curly hair on top that is quite long, but it is short and wavy in the back.  The tips of the longer hair is still a reddish color, but it is growing in blond.  There is a something, something about Jill that grabs your heart and won't let go.  Maybe it is because she won;t give me the time of day or maybe it is that she is always happy and smiling.  She smiles all the time and she seems to be making friends with Papa.
Jillian did not walk as early as Sophie, but at 10 months she is cruising.  She walks from the family room thru the kitchen, thur the dining room, thru the living room and up the stairs she goes.   She has not yet learned to come down the stairs, so this keeps her parents really busy,  Going up and down.

She likes to hold things in her mouth.  She will hold them up to half and hour while playing with something else.   The fish in her month has a magnet.  Her passie is connected to a strap with a clamp (like the ones used to hold with mittens)  Papa stuck the fish to the clamp, then Jillian tried to do it herself.   She loves to stack things up then knock them down.

One correction from Sophie's blog is that Jillian does not watch TV.  She might glimpse up once in a while when Sophie is watching, but she does not watch.  The photo's I had seen were taken when she was very young, So that has changed.  Something about being a year old before TV watching can commence.

Jillian likes to wake before Sophie than go to Sophie room with her daddy and wake Sophie by climbing up on top of her.  She finds this great fun.  She also likes to go to the grocery store and ride in the cart and see all the stuff in the aisles.  Sunday when she was here, she teased Sally with her ball. She know exactly what she was doing and laughed about it.  I think she is a sponge and has a thirst for learning.  Another beautiful child with a brain.   She does have a temper however, she sat on her passie and when she couldn't pull it out, instant hollering. Good thing is, it is quick to come and quick to go. and soon as she got the passie hollering stopped  She knows a couple of words, Uh Oh and Bye Bye.  She waves by curling her finger facing her body.

Beautiful she is, she looks like a China (Dresden Doll) with the most beautiful blue eyes I have ever seen.  Gramma status not withstanding.   I'm still making friends with her, but she brings me more joy than I can express.  I love her with my whole heart and hope to live to continue to watch her grow and develop.  I love you Jillian Elanor, you make my heart sing.

This is the lullaby her momma sings to her each night.  So beautiful.
http://youtu.be/CFOac8zybPE

Just three of the people I love most in the world!

I hope you have enjoyed these small little glimpse of my Grandchildren.  Sort of one day and how I see them on that day.  I love them all equally but different.  Love, Bon

Sophie Lyra's Page

Sophie Lyra is quite a girl. She is 3 years old going on 4 going on 15. She is way, way too smart for her own good and just keeps getting smarter, plus she is a pretty, pretty girl. She has blond hair with just the right amount of natural curl.

Sophie is sweet and kind and loves her sister Jillian to the extreme.  She loves her so much she can hardly keep herself from hugging and touching her.  They often sit next to each other to watch TV and Soph always has her arm around Jill.  Some of her favorite shows are Curious George, Clifford the Big Red Dog, Berenstain Bears, Maggie & The Ferocious Beast and Little Bill.  She gets the story or joke too as I hear her laugh or respond to the show.  This sounds like a lot of shows, but trust me her TV time is limited.

Sophie loves music and loves to sing.  She will sing along with her favorite music playing or simply sing on her own without a background.  She of course performs all of the hand motions etc to whatever song she might be singing.  Some of her favs are Shake my Sillies Out, He's Got the Whole World in His Hands, Wheels on the Bus, Lovely, Love my Family and Jump Up.  She knows all the words and a whole host of other songs.

One day a couple of weeks ago she was here and had us all outside and in the classroom.  She was the teacher of course.  Here she is conducting for us.  She sang songs this day too. 

She is a very lucky girl too as she has taken a couple of bug classes and has real butterflies in her room.  Bug classes aside, she is a girlie girl and always wears dresses, always, and she also always has one baby or another with her.  She has many doll babies, but I am not sure if she has a favorite.

Her dad has taken her to a couple of Michigan football games in her young life, last week they took the bus to the Big Stadium.  She liked the bus ride, a little bit of the game and the band.  They left at half time.  Such a lucky little girl.  

Lessons:  Soph is currently signed up for ballet lessons on Saturday's some where on campus and Swimming Lessons on Thursday at the YMCA.  Neither lessons are going well at this point, but it is still early.  On Thursday before her 2nd swimming lesson her dad ask her if she was going to swim this time to which she replied " I'm just going to sit on the edge and cry." and that is exactly what she did.  While there Jason decided to swim laps and when they were changing he lamented that he was tired from swimming the laps and Sophie said "Yeah I am tired too from crying by the side of the pool."

All in All she is a delightful little girls that can hold a conversation like an adult and tell you many, many things as she has a long memory and has had a ton of life experience.  Her parents take her lots of places we as parents would not have even thought to take such a young child.  She can tell you all about them.  I love her so, sometimes I think my heart will burst.

Condition Update, Advance Directive or Living Will

Good Morning Family Friends & Guest,

Things I have noticed lately: No pain meds during the night and wake pain free। I can stay up and fix breakfast, make coffee etc for 1 to 1 1/2 hours in the am। I take Percocet 10 mg every 3 hours all day and I am basically pain free। I can sit up in a chair for a long time without pain। This gives me lots of hope for the healing of my back। It won't be like new, but way better than the 30 seconds I had before surgery। I am thinking about stretching out the dose of meds to 4 hours and see how I do.

I can't keep my feet warm and if I step on the cold floor they actually sting. Don't have and Idea what the heck I will do this winter to keep them warm. The cold really sets the nuropathy off in my left foot.

I definitely have an increase in my Shortness of Breath। What does this mean? Is my IPF on the March again? This scares me, I don't want to die, I am not ready to die, I am not done here. It is because I have been more sedentary of late due to the back? I can fix that, I will just get up more often and move about. Walk the apartment etc. Only problem is this causes me to be short of breath to the point of coughing (I sound like a barking seal) until I see stars and my heart is racing like a runaway train. That scares me too!

Frustrations: Always sitting on lifeline and pulling. Sliding around in the hospital bed and the sheets won't stay put no matter what I do. I have to remake it 10 times a day and that really takes my air, no matter how much I rest. New - slight headache all the time and blurry vision. It is the drugs or something new. Who knows.

Advance Directive or Living Will

EVERYONE should have one. This is not just for those of us with warning shots, everyone should have one cause one never knows what might happen. It is the best and kindess thing you can do for a loved one.

Four Questions to ask yourself.

1 Do I want to be resuscitate if my heart stops?

2 Do I want aggressive treatments such as intubation and mechanical ventilation?

3 Do I want Antibiotics?

4 Do I want to be tube or intravenous feeding if I can't eat on my own?

My advance directive at this time is only a DNR (do not resuscitate) as my doctor has advised if I was down 30 seconds with my IPF I would definitely come back in an altered state. If I can't be the way I was before I went down than I don't want to come back. Ray knows this, Leah Meunier (none immediate family medical advocate) and all those I love know this. This may change over time as my disease progresses. This might be the biggest favor you do for your loved ones. It is a difficult topic, but one that is most necessary. For further reading see the New Yorker, August 2, 2010 edition or simply google it.

On Friday I was able to walk (with walker) into Office Depot to get ink for my printer. Then we went to Trader Joes and I was able to walk the store, again with my walker, then off to Country Market. I walked in, but used the amigo in the store. Ray took the groceries and I walk back to the car. This was most encouraging. Not 100% but certainly better than 30 seconds. Keep praying for more healing.

I bake a banana cake Thursday. I strapped on my apron from Vickie, piled everything from the pantry on my walker and baked a cake. Then took everything back, again with the walker. Worked out just fine.

I know this is just the first week of school, but Leah checked grades and Owen and Katherine had all 100%s except 1 for Katherine was 111% I am not sure of the subject but I think it was Social Studies. That's a great way to start off the school year and I am most proud.

This is IPF awareness week the 16th thru the 23rd so don't be a asshat, do something spread the word.

Be Well till we meet again. God Bless

Katherine's Page

Katherine is tall and graceful. She has beautiful true brown eyes and lovely thick dark hair and a great smile. She is 10 years old, soon to be 11 and a 6th grader at Forsythe Middle School. She is our 1st born Granddaughter and Owen's sister.

Katherine was know as Kate from the day she was born until the 1st day of Kindergarten when she advised her teacher "you can call me Katherine". She has been Katherine ever since to some family members and remains Kate or Katie to others. Her early childhood friends call her Kate, but her school friends call her Katherine. She is happy either way. I call her Katherine, her Papa solves the problem and just calls her Rag Mop. Her mom, dad & brother mostly call her Kate. Except her mom more often calls her Birdie. Nicknames are a southern thing and huge in the Boggs family.

Katherine set out very young to out read her brother and now reads and comprehends at college level. She just finished reading "Heaven is Four Real". It is wonderful to see her read for pleasure. She loves Greek Mythology and will say her thanks and prayers to the Greek God’s –for example if it’s a beautiful day with the sun shining, she’ll thank Apollo since he’s the God of the sun…
Here is a list of some of her books

1. Percy Jackson (Greek Mythology) series 3 times. She even wrote him a letter.
2. Spiderwick Chronicles 2 times
3. Alcemist
4. Blubber
5. Where the Red Fern Grows (multiple times)
6. Are you there God it's me Margaret
7. The entire Bone Series (the book was 3 inches thick)

This is just a few of the many, many books she has read. I think she is currently reading "The Help".

Katherine likes crafts and sewing. She has made several outfits for her pal Patrick a build a bear dog that has gone every where with her and taken part in every celebration for many years.

Kate is clever, and smart, and witty with a wonderful sense of humor. Example a few years back we were discussing the band the Beatles and then starting teasing about Beetles and somehow ask Katherine how to tell the difference and she said because one is spelled Beetles and one is spelled Beatles. I think she was about 7ish.

This is her most recent picture taken especially for this blog.
I'm sure I have left off many, many things. But this is a snapshot of how I know Katherine on this day.

We are most proud of her and the direction she is heading as she transitions from Little Girl to Tween. We love you Katherine Theresa Powers with our whole hearts.

First day of school September 2011.

Grandson Owen's Page

Hello Family, Friends and Guest,

I have decided to dedicate a page to each of my grandchildren as I know them at this point in their life.  I will start with Owen the oldest and work down.  Each will be a separate blog.  Papa watched Owen when he was a baby, from about 8 weeks to 16 months.
Owen is 13 years old and in the 8th grade at Forsythe Middle School.  He has a most beautiful smile and a great head of hair.  Owen is very kind and kind hearted to others.  He is especially gentle to his two little cousin's 3 years old and 9 months old.  He has new friendships and long standing friendships.
He loves working on the computer playing Video games. Yep Owen sure does LOVE video games.  He has been using the computer since he was about 18 months old.  I have a picture of him somewhere on his knees with a pacifier in his mouth at about that age on the computer.  He has even taught himself to play the keyboard and piano from the Internet.  He plays video Music and shows other how on You Tube.  He also plays Trombone in the school band for 4 years now.  He is very good and I love to watch and hear him play.  You can listen if you like here http://www.youtube.com/user/TheBlacKoopa
Owen tries to explain a game to me, but for me it is like the adults in Charlie Brown, WA,WA,WA,WA,WA.  Still I try to follow along.

Speaking of school, it comes pretty easy to Owen so he really doesn't have to work REAL hard to get good grades.  He likes school and as we all know that is have the battle.  One subject he likes a lot is physical science you know with Bunson Burners etc.  Of course another is Band.

Owen likes a lot of different foods and the good thing is, he is willing to at least try new things.  His favorite TV show at this time is Lost and he knows it in and out. He can be witty and he is just starting to take an interest in clothes.

Owen has many nicknames (damn southern in fluents) ODog, Owie, OlieConolie, Onun, Otis & Oak Tree.

Owen is still willing to talk to his parents about anything.  We are very proud of him and the direction he is heading.  Keep Up the Good Work.  We Love you, Bon (Papa too)

XRay, med adjustment , words to song.

Hello Family, Friends & Guest,

My back was so bad yesterday I called the doctor.  They had me come in for an Xray.  Everything looks fine and no more fractures so they adjusted my pain meds and I have been great all day.  I know the pain meds is just masking, but I'll take it.  Thank you Jesus.

The link is to my Playlist.com account where you will find my newest list of song, My favorite Hymns.  This is the only way I know how to do it until I can figure out how to get the player back on the blog and working.  I have tonight email the developers for help.  I want to provide you with the Lyrics to the Hymn "God Be With You Tell We Me Again" because they are so beautiful.

God be with you till we meet again;
by his counsels guide, uphold you,
With his sheep securely fold you;
God be with you till we meet again.

Refrain
Till we meet, Till we meet,
Till we meet at Jesus' feet;
Till we meet, Till we meet,
God be with you till we meet again.

God be with you till we meet again;
neath his wings securely hide you,
daily manna still provide you;
God be with you till we meet again.
(refrain)

God be with you till we meet again;
when life's perils thick confound you,
put his arms unfailing round you;
God be with you till we meet again.
(refrain)


I am in hopes of getting the playlist up and running soon, but in the mean time, maybe you can go to the playlist to here the melody and then back here for the words. http://pl.st/p/22410267403   We will see.

Have a lovely evening.  God be with you till we meet again.
Be Well.

PS this was the Hymn that we sang in Sunday School every Sunday at the end of class. 

Dreary Days, Pity Potty, Hospital Bed

Hello Family, Friends & Guest,

As you all know by now, I had back surgery on the 22nd of August.  On the 25 I felt the best I had felt in a long, long time and it has been downhill ever since.  On Friday before Labor Day, I was sure I was done with the Hospital bed so I had Med Equip come and pick it up.  As it turned out I was a little Hasty in that decision and had them bring it back the Tuesday after Labor Day.

If I do nothing but lay in this hospital bed, I am convinced I am not sick.  Nothing hurts, but the minute I get up I know I am sick and always will be.  I am trying to be Grateful, but some days it is terribly difficult.  Some days it can be terribly difficult for many days.  I hate that feeling.

It has been cold and raining here for 3 days.  It is barely lighter than dusk all day long and the rain in cold.  High in the low 60's.  I have never done this before but I am seriously thinking of turning the furnace on and it's only the 8th of Sept.  I never turn it on till late October, but maybe.

OK the above was written early afternoon, It is now 8:00 pm and I am feeling very different.  I have had time to think about my visit with Rev Beth.  A couple of my Face book Friends have commented on comments I put there and Cousin Leah has been to visit. With all that I am out of my funk and I think I am in the process of turning the corner to acceptance.  I don't want to accept and I am going to call the doctor tomorrow and ask a few questions. That is 8 days out from surgery and too long to wait for the return visit on the 21st.   Just in case, they want to check now to see if I did something or if there is something I should be doing.  Maybe I should be trying to walk more, I don't know, but at least I can ask a few questions.

I worked a lot to get a music player to work.  The one I had I deleted cause I couldn't change the play list and the one playlist.com has now will not load in right for me.  I found this U Tube one and I got Art Garfield on it, but alas I cannot get it to load the song Grateful.  I can find it on the Internet and the lyrics too, but it will not load on this player.  I will just have to keep  working on it, but no more today.

I did bake a loaf of Blueberry Bread this morning.  Ray got out all the ingredients last night for me so it was just a matter of measuring out the ingredients and mixing it together.  It was made with Bisquick and Oatmeal.  It took Ray and I together to beat this quick bread 30 seconds, but we got her done.  It is tasty, but not sweet.  I think in a pinch, I would bake it again, but only in a pinch,

This is it for this time, I am emotionally worn out, besides that I am tired so.....

God be with you tell we meet again, Be Well

P.s. we turned the furnace on when Ray got home from work.  I had to get the dampness out of here.  Much better now.  :^)