Several incredible things have happened since the last post.
We had our first IEP meeting. The meeting met and EXCEEDED our expectations.
I absolutely feel that God hand picked each person for that meeting. Many angels were amongst Chris and I as we sat there with the goal for Grace to reach her full potential. There were nine people and us, so 11 on the team.
Short story on the initial speech eval, Grace did not qualify on paper. However, one of 'the angel's asked a speech therapist to attend the meeting. The county school personnel were selling the point that she did truly need and could benefit greatly for speech. So it was added, especially for her pragmatic and tangential skills. It was so incredible I cannot do it justice in writing.
After hearing the evaluation read out loud we all agreed, easily, especially me, on the primary and secondary diagnoses. As I write this I am hesitate to type it. My fear is that others will look and treat her differently. I do not want her to be left out. However, I need to step out in faith and know that God is in control and we are helping others too by this blog. So as I take a deep breath,
the primary diagnosis is AUTISM SPECTRUM DISORDER
secondary is SPEECH, and ORTHOPEDIC IMPAIRMENT (OI)
So to update all. Grace received the diagnosis of PDD NOS from the developmental pediatrician on August 11th. PDD NOS is pervasive developmental disorder non-otherwise specified. This diagnosis is on the Autism line and PDD is in the middle and Aspergers is on the other end of the line. Grace is closer to Asperger's end.
The speech basically is helping her out with her who, what, why type questions, comprehension, social and cognitive functioning.
The OI, is due to her brain injury that she received in-utero due to my blood disorders which has caused her right sided hemi-paresis, and the PDD-NOS and possibly something else, This is typical for CP persons, it is usually not the only diagnosis.
So here is the IEP in condensed version.
On Mondays, she attends BLAST, for 1.5 hours. There are three therapist, with five children (3 boys, 2 girls) that basically have a classroom type setting and they teach proper interactions, etc. The therapists are a OT, PT and special education teacher.
On Wednesdays, she and her pre-school teacher (in her young-5's class) receive 30 minutes of in-classroom instruction and assistance.
On Thursdays, she goes to the elementary school after, her preschool day and has 30 minutes of PT and then 30 minutes of OT.
She exceeded expectations on her recent eye exam. She wore her patch each day for a few hours and she strengthen her right eye so much that it was a little bit stronger than her left!! So no patch for a while.
The orthopedic surgeon was singing AMAZING GRACE as he could not believe that she was right-hand dominate. He has never had a patient who was right-sided hemi-paresis who used their right hand, especially to the degree of Grace. She is a determined little lady. He told us that is the reason why she has full range of motion in her right upper extremity, because she is determined to use it. He also feels that she will do great and probably will not need the achilles release surgery!!! This so excites me!! She will need to have the procedure to cast her right leg for the high tone, tightness/contracture soon, and wear the night-time AFO and knee imbolizer.
We just got home from the new pediatric neurologist, who agrees with the ortho surgeon. She truly is amazing Grace. The MD can see the tone issues in her right upper extremity but is so surprised as how well she is doing with it. We really like this MD, she spend time with me (and our MRI/rad report) showing me the damage, gliosis on her brain in the periventricular white matter, and going over the findings. We only need to see her in three years or if we have a concern we want to address with her. The MD thinks that Grace will become a pediatric neurologists, since Grace was doing most of the self-exam herself. Yes, she took the MD's instruments and just started the physical eval!! too cute!!
All testing is over!!! We will get our last results for the neuro-psychologist on November 18th. We might need to see a pediatric hematologist early next year, but we should be done with the doctor visits for the year. Just therapies for now.
Please pray that all that work with Grace will continue to see her though Our Lord's eyes and especially assist in reaching her full potential, not anyone's potential, not just getting by, or to her normal age skills but to her God given full potential.
Please pray for Grace to continue to strive hard to get through the fatigue of her right side, primarily the right arm and leg.
Thank you so much for reading, following up with us, loving us, and most importantly praying. We cannot tell you how much it means, especially the comments. It gives me more strength and determination, thank you, oh, thank you!!!
Have an awesome holiday season, please stop and smell the roses, take an extra moment to extend grace to others, that is the best gift in our opinion this holiday season.
