Look for continued story lines of her surgery. Feb. 12, 2016
https://www.facebook.com/imtooturnt/?fref=photo
I'm Too Turnt: Ellee Emery;
We waited 4 months to see a surgeon specialist for a labral tear. The previous snotty doctor scheduled it just to "appease" us. He said convincingly that nothing was wrong with her hip. We knew something was wrong. The new specialist found several tears plus a significant birth defect. HA! Her dad and I thought her legs looked a little different as she was growing up. We thought is was part of her fantastic uniqueness. We fussed at her when she sat like a frog, feet pointing backward with knees oddly bent. We always told her to sit properly at the dinner table . She consistently complained that it felt better to sit with knees bent.
Who'd a thunk?
It has become so easy for us and for professionals to blame the Ehlers Danlos/POTS/Chronic Fatigue diagnosis for every single thing. An ache here or there, a rib out of place, fainting, horrible pain in hips, Yep, EDS, again. After my daughters' crazy Cirque Du Soleil performance of standing on a chair and hanging a poster in her dorm room (whew, crazy girl!) I was in that dirty, damp, wormy black hole that I thought was my safety blanket for a good while.
She was in immediate excruciating pain. The ER said that nothing was wrong. They sent her home with pain medication that they declared she did not really need. The pain and not being able to walk landed her in a wheelchair for her first semester. She had to switch to another university due to the lack of handicapped accessibility at her current college. (That story coming soon.) Three orthopedic doctors claimed that she didn't have a tear, "Why is she complaining?" "Perhaps she just has no pain tolerance!"said the cold blooded doctors. One called her pediatrician to tattle that her momma was trying to get drugs! How often does someone with chronic pain have to leave a doctor's office crying and feeling crazy? So many people fall into a depressive state feeling crazy and therefore sink into a black hole of depression.
I know now that finding Jesus saved my life and it is the ONLY medication that I take.
I take it Daily!
So here we are.
Preparing for a major surgery. A huge unexpected deal but also confirming and validating. PRAISE GOD! Because if we had not persisted or if she didn't get the initial tear, this may have gone unnoticed. If she does not have surgery now in her mid-twenties she would need a full hip replacement. By her 40's she
would be in a wheelchair.
God is Good! Always!
Surgery:
Periacetabular Osteotomy
Simply put, the PAO cuts the bone around the acetabulum that joins it to the pelvis. Once it is detached from the rest of the pelvis by carefully controlled cuts, it is rotated to the correct position.
Proximal Femoral Osteotomy
This is the cutting and re-positioning of the bone in the upper femur. This will be done at the same time. Her other hip has the same defect. Surgery for that will be discussed after the recovery of the first surgery. She will take blood thinners for awhile to prevent clots. She will sport a lovely catheter.
There is a possibility that she will be in intensive cane. She will have to skip a term with online Liberty. Once again,
PRAISE GOD for this kind specialist who listens and found this defect early!
Humor:
It is our family's mantra. Over and over again PRAISE GOD that my husband and I are goobers and have chosen to be quite silly despite our circumstances. That is one good thing that our children have picked up. Having humor despite the circumstances in our lives, isn't just fun- it also makes the tough times more manageable. This would explain the "cat" scan above. It could explain Ellee modeling her new hospital gown that went with her skunk socks ! The blown up latex gloves triggered cow jokes and on and on! I can't tell you how many doctors and people have asked us "Why are you so happy when you are so sick?" Our answer is: We have the strength of the Lord.
Our support is huge.
https://www.facebook.com/imtooturnt/?fref=photo
I'm Too Turnt: Ellee Emery;
I
had my follow-up appointment for my CT scan results! We learned that my
femur is not actually as turned as we expected!! Which is good news,
and I will not be needing the extra femoral osteotomy on top of the
PAO... Which kind of half messes up my blog name...cause my pelvis is
kinda too turnt...but mostly not turned enough? So I'm getting it
turned? So it should be, "not turnt enough"? ANYWAY. On top of the PAO
and labral tear fix, they will be filing down part of my femur and
pelvis where little bones have grown extra and would cause problems with
healing. That's better than chopping my femur in half! 34 days until
surgery. Time to do a bunch of walking (like I can really do a "bunch"
of walking anyway) before I can't walk at all!
Mommma bears take; (me, Joanna)
The surgeon and his team said that our cat scan was helpful. If they need a dog scan, or other animal scan they will let us know!
Good news, surgery will be a little less intensive. Looks like she will not need her femur broken. However, if you see the scan above you will see only a part of what needs to be done. They will cut that part of her pelvis and hip out and re-position. Good gosh, of all the fantastic genes her dad and me gave her, we screwed up on this one! Good thing we have made up for it by letting her buy designer jeans on occasion. Intensive is relative! Nothing but rest for 8 weeks. I will have to break out the nursery rhymes so that I can read to her by her bedside. The surgeon will know more once he gets in there. How bad and when the arthritis will start and more. We are preparing for surgery. No "water" baths, dry shampoos, loose clothes and gowns, walker, special crutches, a Build-a-Bear, hedge hog, mac and cheese long socks, monkey slippers, you know-the mandatory stuff. Momma will be getting a hotel near the hospital. I can't fathom being 60 minutes from my baby. Plus with my issues, I can go lay down if I need to.
We seem to be in a sort of ongoing health valley right now. Grandma landed in the hospital this week. Quite a few ongoing complications. Praise God over and over and over again as we have Him by our sides! And so do our parents. No matter what the plan is, no matter what happens, we are assured that God's promises will be there for us.
Keep an eye out for on-going story line on Ellee's major surgery... Feb. 2, 2016
Ellee's Cat Scan
Revealed Surprising Details
that caught us way off guard!
The first scan was inconclusive
| ||||||||
 |
| Our family chooses Faith |
My daughter will be having major surgery.
It's called Periacetabular Osteotomy and
Proximal Femoral Osteotomy
March 16th
She will need to learn how to walk again.
Who'da thunk?!We waited 4 months to see a surgeon specialist for a labral tear. The previous snotty doctor scheduled it just to "appease" us. He said convincingly that nothing was wrong with her hip. We knew something was wrong. The new specialist found several tears plus a significant birth defect. HA! Her dad and I thought her legs looked a little different as she was growing up. We thought is was part of her fantastic uniqueness. We fussed at her when she sat like a frog, feet pointing backward with knees oddly bent. We always told her to sit properly at the dinner table . She consistently complained that it felt better to sit with knees bent.
Who'd a thunk?
It has become so easy for us and for professionals to blame the Ehlers Danlos/POTS/Chronic Fatigue diagnosis for every single thing. An ache here or there, a rib out of place, fainting, horrible pain in hips, Yep, EDS, again. After my daughters' crazy Cirque Du Soleil performance of standing on a chair and hanging a poster in her dorm room (whew, crazy girl!) I was in that dirty, damp, wormy black hole that I thought was my safety blanket for a good while. She was in immediate excruciating pain. The ER said that nothing was wrong. They sent her home with pain medication that they declared she did not really need. The pain and not being able to walk landed her in a wheelchair for her first semester. She had to switch to another university due to the lack of handicapped accessibility at her current college. (That story coming soon.) Three orthopedic doctors claimed that she didn't have a tear, "Why is she complaining?" "Perhaps she just has no pain tolerance!"said the cold blooded doctors. One called her pediatrician to tattle that her momma was trying to get drugs! How often does someone with chronic pain have to leave a doctor's office crying and feeling crazy? So many people fall into a depressive state feeling crazy and therefore sink into a black hole of depression.
I know now that finding Jesus saved my life and it is the ONLY medication that I take.
I take it Daily!
Preparing for a major surgery. A huge unexpected deal but also confirming and validating. PRAISE GOD! Because if we had not persisted or if she didn't get the initial tear, this may have gone unnoticed. If she does not have surgery now in her mid-twenties she would need a full hip replacement. By her 40's she
would be in a wheelchair.
God is Good! Always!
Surgery:Periacetabular Osteotomy
Simply put, the PAO cuts the bone around the acetabulum that joins it to the pelvis. Once it is detached from the rest of the pelvis by carefully controlled cuts, it is rotated to the correct position.
Proximal Femoral Osteotomy
This is the cutting and re-positioning of the bone in the upper femur. This will be done at the same time. Her other hip has the same defect. Surgery for that will be discussed after the recovery of the first surgery. She will take blood thinners for awhile to prevent clots. She will sport a lovely catheter.
There is a possibility that she will be in intensive cane. She will have to skip a term with online Liberty. Once again,
PRAISE GOD for this kind specialist who listens and found this defect early!
Humor:
It is our family's mantra. Over and over again PRAISE GOD that my husband and I are goobers and have chosen to be quite silly despite our circumstances. That is one good thing that our children have picked up. Having humor despite the circumstances in our lives, isn't just fun- it also makes the tough times more manageable. This would explain the "cat" scan above. It could explain Ellee modeling her new hospital gown that went with her skunk socks ! The blown up latex gloves triggered cow jokes and on and on! I can't tell you how many doctors and people have asked us "Why are you so happy when you are so sick?" Our answer is: We have the strength of the Lord.
Do not sorrow, for the joy of the Lord is your strength.
Nehemiah 8:10 NKJV
Faith in God's plan for our lives is what gets us through. Amen!
Our church, our family, friends and neighbors are offering to help in any way. Ellee's boyfriend gives her attention and commitment that is rare. The Lord is good!
For getting to know Him and love Him we have been soothingly bathed in
His blessings and promises! Thank you Lord!
For getting to know Him and love Him we have been soothingly bathed in
His blessings and promises! Thank you Lord!
Blessed is the man who trusts in the Lord.
Jeremiah 17:7
 |
| Even our puppies are lovin' on her! |
 |
My flesh and my heart may fail,
but God is the strength of my heart and my portion forever.
Psalm 73:26-28 NIV
|
 | ||||||||||
| Yet what we suffer now is nothing compared to the glory He will reveal to us later. Romans 8:18 NIV |
Prayers would be a blessing!
Ellee's blog:mysicklife2012.blogspot.com
Serious Side Note:
My husband and I have learned in the hardest way to hold our tongues. (....Sometimes.)
Having experienced so many difficult doctors over the past 32 years there are times that we have seriously considered throwing darts at their faces or duct taping them to the X-ray machine and letting red ants that bite hard loose. These days; It is HARD, but we sit on our thoughts and reactions for a good while first. I have only done it 4 times, but instead of writing a nasty letter to the offender, I have written a letter letting them know that I am praying for them and their patients; that they will develop a kind and caring heart. I've never heard back, but I am no longer bitter.
Kudos for Awesome Doctors:
I wanted to mention that we have also had amazing doctors (although way fewer.) They all seem to be bewildered and saddened by our dingy report of other doctors. They listen to us without wiggling, the often used message that time is up. They ask many questions. They want to know our history. They now know a little something about our lives. They care. They are the few that have figured us Zebras out. PRAISE GOD FOR THEM. One told me that I humble him. By walking in, I remind him that he does not know everything. One calls me Mrs. Potato Head. He says that he will stick with me until he puts me back together. One tells us bazaar stories of his travels around the world. He also educates us from a medical book.
More good stories later.
James 8:3-12 NKJV
But no man can tame the tongue. It is an unruly evil, full of deadly poison. With it we bless our God and Father, and with it we curse men, who have been made in the similitude of God. Out of the same mouth proceed blessing and cursing. My brethren, these things ought not to be so. Does a spring send forth fresh water and bitter from the same opening? Can a fig tree, my brethren, bear olives, or a grapevine bear figs? Thus no spring yields both salt water and fresh.
Comments