Hold on to your seat...... we have an official diagnosis for Molly's delays
Molly has a complete Ageneis of the Corpus Callosum. c-ACC
In general She is Missing the largest piece that connects her right and left hemispheres.
At 4 weeks gestation the corpus Callosum just never developed but everything else grew just fine around it. Sometimes other issues can follow lesions, cysts other brain abnormalities, Hydrocephaly
( fluid on the brain) . In Molly's case it is showing up as a physical delay and a slight cognitive delay. Other things might soon follow but only time will tell. Absolutely nothing could show up and she could just be a bit clumsy. We hope for the best
At 9 mos old Molly was physically 2 mos and 5 mos cognitively and now at 1 yr she is 4 mos physically and 9 mos cognitively. SO, with that being said Molly is progressing great and that gives us hope that she just might catch up and lead a relatively normal life. Not saying we could also have a few bumps in the road as she grows but she could she could leave those bumps behind her too.
To learn more please google it please us the websites I have listed. It is a 1% chance that this can happen to anyone. For all you know you could be missing your Corpus Callosum.
use
webMD
www.nodcc.org
or my new fav ( read the underlined headings)
http://scenicbeauty.tripod.com/AngelsAroundTheWorld.html
these sites can explain so much more that I have the patience to type out
In short: Keep in mind this can range from mild to moderately severe
physically delayed gross and fine. Social,Emotional and Behavioral and
possible learning delays. Other syndromes can follow but like I said only time will tell.
Molly also has Mircocehpaly which means small head. Her head growth is slowing and they are watching this carefully. Her brain has plenty of room to grow though. Only time will tell us about this too. She will be watch carefully for serious eye problems and hearing difficulty. Right now she just has weak eye muscles ( strabismis) and her hearing is fine.
Because this is a mid-line birth defect Molly has to be watch for other issues with her heart, lungs and other parts of her body that grew from the mid-line. So far nothing has shown and it seems that she is healthy otherwise. She is at a higher risk for seizures but any child is ; she just has a higher chance because of the brain Abnormality.
It's nice to have an explanation but at the same time of hating this it is also comforting that I am a special needs teacher/with experience and knowledge of speech and hearing ,behavioral and social emotional,and that I have worked with children with all these issues before . I don't know everything and I didn't go to school just to have my own child have something of this nature. Still trying to come to grips with this, even though it could mean she could lead a normal life and show no signs of problems from this birth defect.
Please don't be afraid to ask about Molly and Mikaela of course. I will try to blog on the 15th of every month now about Just Molly but on the first about Mikaela and our family happenings. I won't torture you with two sites about the family. Even though I am still entertaining the idea of giving Molly her own blog with a specific title so other families can find her story and read about our experience with C-ACC. I know I am finding it nice to read and see how others are doing with their child and adults that have lived with this their whole life.
Molly now does:
She waves Hi and Bye
Gives kisses when asked
shakes her head yes and no
uses her eyes to tell me what she wants
reaches for things almost pointing
sits with support but loves to fall over to get to her tummy and tries to lift that butt and bends legs as if to crawl
eats age appropriate foods ,no worries on eating issues beside her high palate
( which is a mid-line thing, she could have a clef palate we don't see but I don't think she does. My pallet is higher then normal too so it might mean nothing
LOVES her books
Language is Molly's strongest asset right now.
Oh yeah she is the Happiest Baby I know!!!!
We have to make her aware of her body so she can learn that when see sees something she wants to do or grab she can learn the physical action with the thought and connect the two.
We have everything in place already to help her succeed and that's all we can do.
We are currently in the process of researching equipment to assist her. She might not need sitting or standing equipment for her entire life because she is showing great motivation to do those things.
So hopefully we can borrow equipment before getting the insurance to pay for it. If we do have to purchase equipment we are entertaining the idea to donate that equipment to the local Early intervention program for others in the area to borrow or create a borrowing program for equipment for special needs. I know I don't want to store the equipment she grow out of so why not pass it on to another child who needs it.
Please don't hesitate to ask email or FB me about Molly and please book mark our blog and follow Molly's successes.
There is so much more I can say but the websites and links on those site I provided have everything I can possible tell you about it.
Matt and I are doing ok. I feel like I have been side swiped but time will get me through will get us through this. We are fortunate enough that I can stay home with the girls. This makes things a bit easier with all the Dr's appt and therapy Molly needs plus time with Mikaela.
Thanks for reading......
