Update on Emma's most recent Doctor's appointment! For the last 4 years a good chunk of Emma's skull is gone, hence the need for a helmet. Every doctor's appointment, it's been "Maybe a year, let's watch the thickness of her skull and see". Earlier this year we met with the Craniofacial Plastic Surgeon and she needed to confer with her neurosurgeon over Emma's skull because she felt Emma's skull is not quite thick enough to have done it this past summer. Well, this morning he said.. Anytime we are ready, the docs are ready and that Emma is a good candidate for reconstruction NOW!! Whoo hoo! HOWEVER.. We are going to schedule for this summer for a few reasons. 1. I would prefer Emma to not miss any school.
I know, I know... I feel like I have been saying this forever but it's really happening this time. Dr. Shafron is going to start scheduling and coordinating everything ASAP!! We could have done it now but we all agree that summer will be better for Emma. Sooooo... look forward to emails and photos around June of Emma's surgery! YAY!!
So what will be done is a Calvarium Split/Splice. Another area of her skull will be removed, sliced in half. With half going back to where it came from and the other half being placed in open area and grafted and anchored in. Her down time will most likely only be 3 weeks, of course depending on no complications post surgery. Don't get me wrong, I am scared to death. Nothing scares me more then the thought of Emma not surviving this or any other complication that may arise due to her seizures, her shunt, etc. I am staying positive. Emma survived once.. she can do it again.
I always thought closure meant seeing Tom go to prison and him telling us what truly happened. I have accepted that has not and will never happen. Tom will never tell us what really happened, and he will not go to prison unless he violates his probation. HOWEVER, it no longer matters. As long as he NEVER lays his hands on another child, Emma and I will have closure when her skull is repaired. Emma has a long road ahead of her and my job is to guide her and let her see the beauty of her life and the chances she has been given in this world. I don't want her to grow up with despair or anger over this brutality she has suffered. She has lived and lives a great life and I want her to see that each and every day.
Also, I am starting a new job on Thursday with a GREAT and progressive Oncology office. I am very excited! The pay is great, the benefits are awesome. So, Emma will have plenty of insurance. So, she will have her Medicaid, the CRS (Children's Rehabilitation Services), ALTCS (Arizona Long Term Care Services), DDD (Department of Developmental Disabilities) and now, add Blue Cross Blue Shield. Of course, since Emma has been declared permanently disabled since she was 11 months old, Emma will always be covered under any insurance plan I have, no matter her age (even at the age of 40!) Can it get any better? After 4 years of worrying, this is a GREAT year!
Emma is steadily progressing and she is beginning to walk more and more with less assistance. She can stand for 60 seconds with NO HELP! She just gets scared, as long as she knows somebody is right beside her, she is more willing to be a little more adventurous! She has quite the personality, though. she has sent me to time out many times. As a matter of fact, as I had a heated conversation and fight with her Dentist's office Wednesday morning (long story.. but they are fired), I kinda forgot she was in front of me and I was getting a little loud and Emma said "Momma.. you talk nice or you go outside!!" She is a hoot! The Dr's got such a kick out of her today, she was showing off for them and being just the cutest!
She is a smart little cookie and a tough one at that! She is totally in to Barbies, Princesses (She says she is Cinderella, she calls me Belle and Aunt Thereasa is Sleeping Beauty). When she is mad at me for sitting her on the potty chair, she is telling me off- while singing! It's the funniest thing ever!
On another area, though, I am hoping that for next April (Child Abuse Prevention Month) my friend, Jessica and I, in conjunction with Phoenix Children's can get a candlelight vigil for survivors and non survivors of Child Abuse. As we take baby steps, we would like to create a park in honor of Child Abuse Victims. That will, however, be in the future.. but slow and steady wins the race! Is this the beginning of all the good things to come? I think so!I am attaching pictures of Emma in her costume this morning (she trick or treated at the CRS Clinic this morning). She is a Wooland Fairy!
Please keep Emma in your thoughts, hearts, etc. as we start getting closer to this surgery!
Thank you all for all of your continued support!
Jaime and Emma
PS Hi Salena!! Yup, I am getting more active! You made me a blogger addict! LOL
And Mary, send me your email and I will email you my number and I will also post a blog about the entire story about what happened to Emma.