Monday, October 16, 2017

updates...

cody...
october 19--mri-- this will be 2 months from the last scan which showed a small area of enhancement that was worrisome for tumor recurrence.  they will compare this scan to the last one and look for any changes.
october 20--avastin infusion #11


kenley...
last thursday i took kenley to her 1st (of 4) appointments in mankato, with dr. surdy.  we were referred to this clinic to have neuro-psych testing done. a friend explained neuro-psych testing to me this way:

"testing that includes medical as well as educational and psychological assessments in an attempt to link behavior issues to brain structure or pathways"

so basically, they are trying to figure out if there are issues in her brain that account for her behavior. her testing sessions will be completed on november 2nd but we won't have the results/report meeting until november 16th. at that time, we will be provided a very detailed treatment plan for her. 

we were also referred to greater minnesota, which is a service that can provide in-home therapy for kenley and our family. this service was not previously available, but is now an option. their plan is to do some intensive therapy with kenley and slowly work towards introducing her back into the home.

our hope through all of this is to get a comprehensive care plan in place in order to avoid residential treatment for kenley altogether. this would be best case scenario.


having kenley out of our home has been incredibly tough. i cry. sometimes a lot. my heart is broken. but i also have to have hope. i have to have hope for the future. we were in a pit. our family was being swallowed alive. we were desperate for help. one of the only things that gets me through the days is the hope that there is light at the end of this tunnel. i know it's a long damn tunnel, but i'm hopeful for the light.

it's hard for me to grasp the fact that we are actually doing the very best thing for kenley. i keep focusing on the fact that we couldn't help our own child. but the truth is, we are getting her help. we're doing the best we can for her. and i believe god has big plans.

i've been told it's ok to grieve, but i still feel guilty. i mean, it's not like she's left this earth and i would never want to take that away from anyone who has lost a child. that's what makes me feel guilty. but this is our reality.  i've lost my 7 year old, at least in terms of proximity to my home.

i'm also learning how to rest. with kenley being out of our home, we aren't in constant battle. it's not easy to rest when your child is not at your home anymore. but i know how important it is to invest in my boys right now and take the break i (we all) so desperately need.  resting will better prepare me to parent her when she does come home.


everything we are going through right now, is all so very overwhelming for me. i can't imagine the questions you have. the tough part is, i don't know what i'll be able to answer for you. i'm trusting god will take our hand and guide us through.


"i know the plans i have for you, declares the lord. plans to give you hope and a future."
-jeremiah 29:11



1 comment:

  1. Holli and Cody I can not even imagine what you are both going through, with both Cody and Kenley. I spend a lot of time in tears myself just thinking about all of you. Rough time in church on Sun but made it through with Gods help. I do have many questions and I realize there are no answers right now, and I know we have to be patient and let God do his plan, another question WHY???? Wish we could spend some time together and just be able to visit. Love you all and pray, pray and pray some more. Grandma and Grandpa

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