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