I have been a little slack in my post this school year but here is my first. We had a family art night and Maddux was there with a few friends from class. She stopped running around long enough to get a shot with Lauren. Daddy even came and helped draw pretty pictures!
Maddux starts her first day of first grade tomorrow. Her new teachers team teach so Maddux has the added bonus of being taught by 2 great teachers! Hoping this year will bring even more progress than last year. I am sure it will. We are weaning her seizure meds to 1/2 the dose and hoping for big changes. The doctor said we wouldn't see a difference but they have been wrong before! More pictures tomorrow from her first day of first grade!
I just can not believe that Maddux graduated from kindergarten on June 2nd. She PASSED! She will start first grade on July 7th. Almost all the family came down and had a pizza party and celebrated her "big girl shoes" She has come so far this year. She reads, shes writes, she makes patterns, she counts, she's amazing! Although retelling of stories, and multiple task instructions are still a struggle for her she is so amazing in her progress. I can not thank her teachers and one on one specialists enough. You never can. Thank you for a great year filled with memories that I thought I would never have with her.
As we are ending the school year on June 3rd I wanted to post my favorite picture of Maddux to date. She has progressed leaps and bounds because of her teachers Ms. Dell, Ms. Grice, Ms. Burns, Ms. Horan, Ms. Hooker, Ms. Holmes, Ms. Willis and one of her favorites... Mr. Benson...the PE teacher. My girl is back with all of the eye contact in the world, laughter and yes attitude. God loves a little attitude. To parents like "us" it means they get it and can feel it. Something Maddux lacked before. Thanks to all of the people in Maddux's world this year. You have been amazing and I would not have her anywhere else! Her graduation performance pictures will be up soon!
I was so happy to be able to help out on field day this year. There were so many parent volunteers that were there to help out Mr. Benson. He is ONE of Maddux's favorite teachers. All I hear when Maddux gets in the car is, "I give Mr. Benson big hug." Thanks to Ms. Dell I was able to have these photographs. Aside from the artsy ones these are all Ms. Dell. Thanks bunches! And thank you Mr. Benson for you hard work putting together this fun, hot day!
Maddux took a field trip to Agape to learn about bugs and season changes. Lets just say we saw plenty of bugs! We took a hike to listen to the sounds of the season, made a nature recipe to smell the season and we also pet a snake. Maddux specifically looked for ladybugs but all we found were ticks. EWW!
During Maddux's track out time, her Grammy took her to Horse Friends of North Carolina to take part in a non-profit organization that gives free riding lessons to kids like our special Maddux. This particular group was located in Greensboro, NC, and the kids that day got to feed, brush and ride the horses who themselves are just as special. The horse who Maddux rode was blind. Although she found the donkey, Eeyore, to be the coolest thing there. I did not realize there were these types of groups out there that do this just for the kids out of the kindness of their hearts and they run this based on donations. As Maddux rode, the parents sat and shared stories, triumphs and struggles. We had a great time and can not wait to do it again this month. ...but showing love to a thousand of those who love me and keep my commandments. Exodus 20.6
These are a few images from Maddux's classroom and from her first performance for the parents from music class. She practiced very hard at home and did very well in front of everyone. Can you believe Maddux has a writing journal! I am sure I'll find a company that will bind it for me as a leather keepaske album!
I can't believe we have a 6 year old now! And because Maddux is now 6 that means her baby brother is now 2! This was the best brithday ever. She understood it was HER day and she was going to have cake and presents! She even made "birthday beads" to wear in her hair to school that day so everyone knew it was her special day. She almost ate the candles in this picture but we were so happy we did not care! Happy Birthday sweetie!
We call her cake the pantry surprise! I told her to look in the pantry so she could decorate it with whatever she wanted! Never thought a cake could look so beautiful...
Our journey began when Maddux had her first visible seizure cluster at 15 months. After an EEG, her final diagnosis was a rare type of infant seizures called Infantile Spasm Epilepsy. Commonly misdiagnosed as reflux. Her prognosis was that her physical and mental state would not be above mental retardation. After months of trying to find out what was wrong with Maddux, a mother's intuition, we finally had a diagnosis. We were happy to finally have a label so we could start her treatment. After 3 years of different seizure meds, hospitalizations and a special diet, her seizures are now gone. But we consider her in remission. We will never forget the shots of ACTH, the blank, over-medicated stares or the first day she went without 100 seizures. Every night we thank God for giving us another seizure-free day. Even though that was the hardest part of this journey, she was still our Maddux!
But it was our own eyes that saw these great things the Lord has done. Deutoronomy 11:7
Her Diagnosis
During our battle with Epilepsy, Maddux began to slip away from us. Her words stopped, her smiles stopped and she acted as if she were the only one in the room. The toys stayed on the shelves. I would have given anything to have toys to clean up. It was like the love was gone from her eyes. Maddux used to not answer me because she was having a seizure and her brain couldn't "hear" me. Now she was not answering me because she just didn't know the answer. When Maddux turned 2 years old she was diagnosed with Autism . Devastating, yes, but now we could take this diagnosis and find her and bring her back. Even with that label she was still our Maddux.
He performs wonders that cannot be fathomed, miracles that cannot be counted. Job 9:10
Her therapy
Maddux started therapy at 18 months. She began her treatment with in-home OT and PT and as she got older she graduated into Early Intervention. She was in a full day program at Pediatric Therpay Network in Torrance, CA where she had one on one OT, PT and SLP classes as well as group sessions. Words can not express the miracles that happened behind the doors of that center everyday. Maddux was able to work with the most wonderful, caring and knowledgable people who changed all of our lives. I dedicate all of her progress to these wonderful people who I hold dear in my heart. She has come so far and I can not wait to see what lies ahead for her! She is still our Maddux!
I will remember the deeds of the Lord, yes I will remember your miracles... Psalms 77:11
Books I used for resources
The Vicious Cycle: SCD Diet
Women's Devotional Bible
The Out of Sync Child
Seizures and Epilepsy in Childhood, A Guide
What You Doctor May Not Tell You About Children's Vaccinations