Tuesday, October 29, 2013

~*Plan of Attack for Analina*~

Analina had another trip to U of M for her Neuro follow-up and to see the Orthopedic Surgeon. What started off as a simple 10 second CT scan...yes, it only takes 10 seconds to take a CT scan, ended with her fully sedated and intubated.

Our plan was to simply give some Happy Juice to make her loopy and then do the quick scan....plans changed when the anesthesiologist refused to allow me to join her.  As a trauma Mama I know that things like sedation and medical procedures can cause panic attacks on one hand to full blown PTSD flashbacks on the other hand.  

No amount of persuading or digging in my Mama Bear heels would get the minds that be to change their plans...she fought for her life and had to be fully sedated. I was not allowed to be with her. She remembers it all, even though we were told she would not remember any of it.

I cried ugly tears. 

Finally, I was called back and was told by Nurse Meanie that I could not touch her....I told her that I was going to kiss my girl on her cheek.  I was read the riot act for touching her. She told me that her airway could close from the slightest movement or touch. I sat there crying ugly tears for 20 more minutes....Nurse Meanie never left her post...knowing I'd sneak in kisses and words of comfort to my sweet girl. 

When we had the sedated MRI done locally at Helen DeVoss they encouraged me to climb up in bed with her and comfort her well. I understand that every hospital has different procedures but one thing is clear, we were not heard. Concerns were not listened to and that is what I grieve. 

The plan for now is to schedule her spinal surgery for the next month or two.  We will need to be covered in prayer. Her type of Spina Bifida is extremely rare and the repair will be extensive. 

Her hip needs extensive surgical repair and her repaired club foot needs repair, again, as well. This will be scheduled when she is healed from her Spinal Surgery. We see the Orthopedic Surgeon in March to discuss when to schedule that surgery.

Jeremiah 8:18
You who are my Comforter[a] in sorrow,
    my heart is faint within me.

John 14:16
And I will ask the Father, and he will give you another advocate to help you and be with you forever— 

Tuesday, October 22, 2013

~*The Outtakes!*~

The outtakes of our portrait session!

The tongue....Check out Analina


The wiggler...Check out Donosaur
Let me GO!!!!!



What on earth is he doing?


Rolling her eyes!!!


Ohhhh Ohhh!!!!












We had some fun, can you tell?



Monday, October 21, 2013

~*To Care For Oneself*~

I had a dear sweet friend who shared more than just my love for PSL's, she shared my thick, sticky blood clotting disorder.  She saw to it that I knew what would be beneficial to treating our disorder and what would be detrimental.  Whenever she came across some new tidbit of information on treating it she would send me a message. Her persistence on keeping me updated showed her deep love for others.  She recently passed away possibly due to complications of having the tendency to clot.  

This morning I washed a sinkful of sharp knives and nicked my finger and as I applied pressure to stop the constant stream of red ooze my thoughts turned to my friend that I missed so dearly.  A new definition of what it means to take care of myself emerged from that moment. 

No more will there be those sweet reminders sent in love about what can be beneficial or detrimental in treating this disorder. No more will someone have my back on this.

I'm issuing a challenge. 

Redefine:

Your health
How you care for yourself
Your goals

Don't wait for a light bulb moment.
Don't wait for someone to be sick to be inspired.

Don't wait!!!

 My goals for this challenge

Consistently workout!
(HIIT, Cross Training, Yoga, Running)
Eat CLEAN!
Be active with my children!
Be present (limited online time)

This challenge will run from TODAY until December 31! That is 71 days of opportunity to redefine how I care for myself.

How are you going to redefine your health?

Psalm 73:4
They have no struggles;
    their bodies are healthy and strong. 
 

Sunday, October 20, 2013

~*Portraits*~

We did a spur of the moment portrait and family pic session today. The sky grew sunny after raining all weekend and we drove to our fave State Park.

I think they turned out pretty good for impromptu fun!

Here's the two best family pics...



The boys and then the girls. 



Now the portraits

Kitty





J.J.






Sunshine



Dalton




Analina




Peanut





Donosaur



Mom and Dad







  
(Outtakes coming tomorrow)

Isaiah 61:3

  and provide for those who grieve in Zion—
to bestow on them a crown of beauty
    instead of ashes,
the oil of joy
    instead of mourning,
and a garment of praise
    instead of a spirit of despair.
They will be called oaks of righteousness,
    a planting of the Lord
    for the display of his splendor.





Friday, October 11, 2013

~*Building Trust Through the Pain*~

I was honest with them about the pain of cathing, that it wasn't big owie but it felt weird and was uncomfortable and would pinch or sting. 
 
Being honest with our children has built trust, through the pain and discomfort.
 
Telling them that I am not letting other people hurt them. That all these white lab coats care about them and are part of our team to get them healthy and keep them safe. 
 
We are so grateful for our Attachment therapist and the gems of wisdom he gives us. I am forever learning how to parent these beautiful children and all their varied special needs. 
 
We love these little ones and they bless our family!
 


 
Acts 2:39
The promise is for you and your children and for all who are far off—for all whom the Lord our God will call.