I found out I was expecting in March 1998, We were actually doing the March of Dimes walk when I decided I was pregnant! My Husband laughed at me because I could have only been about 2 weeks along, so on a bet we stopped at the local drug store (during the walk) and I bought a test went into the bathroom and did the deed....walked around for the allotted time frame and sure enough I was right!!!
My pregnancy was almost normal, I had a lot of morning AKA 24/7 sickness and had to go to the hospital a lot to get an IV so I wouldn't dehydrate. My father and nieces would take time babysitting me (well looking after my 1 year old) so I could rest and not get sick.
Other than the morning sickness everything seemed normal....
38 weeks (12-29-1998) I went into the hospital for my scheduled repeat C-Section, gave birth to a 6 pound 21 inches long baby boy. Cody has swallowed a little fluid and was purring (I thought it was cute but the nurses thought he should be checked out). Later in recovery the doctors wanted to test Cody to check if he had Down Syndrome (
He didn't).
We went home on 12-31-1998, Cody fed normal and to me was a normal newborn. On his first newborn well baby check he had lost a pound, doctors were not concerned. Months following we had to switch formula (he was having bad re flux and would vomit every time I burped him. I also noticed that when I fed him he would only fed if he was on my left side (It seemed like he couldn't turn his head to the left)!!! I also noticed that my older son had lifted his head up, rolled over by this age and Cody was not.......so off to the doctor we went.
Trial # 1
The doctor said Cody had Torticollis, a stiff neck and stiff muscles. He referred us to an OT and she worked with Cody and the Torticollis went away......he was behind on developing because of the Torticollis but she said he would catch up. Cody did catch up in 2 months he lifted his head, rolled over, sat up, crawled and stood........He was off and running!!!!
Trial #2
Whooooow what a handful he was!!! We wanted him to walk and play and we got that 10 fold he was the most hyper off the wall child I had ever met. He had been kicked out of daycare for his aggression (luckily my sister in law had an opening at her daycare). We moved to another state and the lady that ran the daycare where Cody was enrolled took Cody in stride, she kept him by her side always. We moved to another state 2 years later and Cody was enrolled in PreK, (mind you I raised him the exact same way as I did his older brother) He was able to enroll in the program because he was not up to Kindergarten level, when his older brother went to PreK (private school) he knew his abc's, colors, shapes, and he could count, Cody could not.
Cody was not the "normal" size compared to his age so our doctor had us to a bone age test (his skeleton was 2 years less than his actually age)
Yet again Cody was kicked out of daycare and almost our of the PreK program. We started Kindergarten and told the teacher he was a little wild.....I literally took my lunch break everyday to sit with Cody in class so the teachers could have a break, I literally received a phone call every day from the school, and he always had a Red Ribbon on his shirt (Green was great behavior, Yellow was warning, Red was BAD) My husband and I divorced.
2nd year of Kindergarten (I kept him back) the pediatrician said Cody had ADHD and OOD, we started medication and I thought we were good to go!!!! NOPE even with the meds not so much...
We have found great teachers and not so great teachers, some times the best intentions from those amazing loving people may not be the best..Cody found an amazing lady that was his SPED teacher and she took him under her wing (like the daycare owner years before) she protected Cody.
In 2008 after voicing concerns to our fantastic pediatrician she referred us to Vanderbilt Children's Hospital we saw and Endocrinologist (TESTS WERE NORMAL) we saw the Geneticist, the doctor looked at Cody and said well I know what the issue is......He has Noonan's Syndrome (TEST CAME BACK NORMAL NOT NOONAN"S) BUT he had so many of the symptoms that is what the diagnosis was.
(Cody went Bowling...and that Ball took him out)
So Lets skip forward..................
Cody was throw to the wolves a little (elementary teachers were more understanding, more protective, more loving) than the middle school.) 6th grade he and I were woken up from a dead sleep with ice water....they no longer were protecting him, they we no longer understanding, they were not going to hide Cody or his behavior any longer!! Phone calls about how horrible he was started to come in, he did well in class (I think they pass him for the sake of passing him off to the next grade)! 7th Grade came, and it got worse....14 years of being told how horrible he was caught up with me, I no longer trust the doctors I not longer trust the school!!!! I was going to figure out and prove that this little 8 year old (with a 14 year old age) had more going on than just being hateful and horrible.
October 2012 we got the State of Tennessee involved, they were our blessing! We scheduled a follow up with the Geneticist and scheduled a full psych eval and IQ test.
1. The Pscyh Eval said Cody had severe ADHD combo with emotion and impulse control issues, Cody also had 2 markers for Autism (not enough to be autistic) he also had Extreme ODD. He has some anxiety and depression but the Dr. thought that was related to being a horrible child (I use the term horrible NOT because I think nor refer to him as one, but that is how Cody feels) Cody also has an IQ of 72 (3 points from being classified as Mentally Retarded)
2. The Genetics Doctor did another work up on Cody and thought Noonan's was not the right diagnosis. He took 2 tubes of blood and 2 months later we were told he has a 10p13 Deletion....what does that mean??
As if right now I don't know what that means, there isn't many children or really any information on Children that just has the 10p13 deletion, he is missing over 20 genes BUT they can give symptoms of what other children had that had that deletion which fits Cody to a T!! However those symptoms came from Children that were missing other bands on Chromosomes or had duplicated bands in other areas....
3/1/2013
We have a name but really no answers!!!
I am fighting with the school and on the 8th we have a placement meeting to discuss our education options for Cody with his middle school!!! Cody also has a great team behind him. His Older brother, Baby brother, Step Dad, Me and his Dad....are all in his corner!!
