Monday, August 29, 2011
My sweet girl, Victoria
My 15 yr old daughter, Victoria, doesn't really have a "labeled diagnosis". She is developmentally delayed, both physically & mentally. She has a generalized anxiety disorder and was diagnosed with a missing #2 chromosome (2q37 deletion syndrome) a few years ago along with 3 heart defects but because the diagnosis was a new discovery, there is nothing to compare to or refer to for help for us at this time. Victoria has always been a very happy girl. Up until recently, I don't even think she has noticed her delays. She really struggles with social skills and because of that, she has a hard time making friends. Most of her friends are less than half her age and even they sometimes don't want to play with her. I feel so sorry for her sometimes. I recently signed her up with her BFF doing cheer and dance with others that have disabilities. She seems to enjoy it alot and I have been googling to find her more activities and started this blog to help me both vent and possibly speak with other moms and dads with similar stories. I am so thankful for Victoria & the joy that she brings to our family. I know that she is a blessing from God and that He has great plans for her! I would love to hear from some of you about your child! :)
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Good for you for writing a blog! I think writing is VERY good therapy.
ReplyDeleteYou know Brielle, but for others....
I had the chicken pox when I was 6 weeks pregnant. We watched the pregnancy very closely and at 35 weeks they found her head circumference to be small. An amnio showed that she had been affected by a very common virus called cytomegalovirus (or CMV) -- it's in all the baby books and about 85% of all adults have had at some point in their lives. One in every 150 newborns will test positive for it, but a much smaller percentage are affected long term by the virus.
Brielle is 15 now and is disabled. She has cerebral palsy. Brielle can walk but with a limp and her right hand doesn't work right. She can't talk, but uses sign language although she isn't deaf. She has cognitive delays as well. However, since we've been homeschooling for the last 15 months, she's made remarkable strides.
One of the best part about Brielle's life is that Victoria is her best friend!
Hello Denise! Thank you for the Blog. We have a 18 month girl that has been diagnosed with Deletion Syndrome. My Daughter has hypotonia, curvage in the spine and heart condition. Your blog has been most helpful. I do have a few questions. If you would kindly answer. When did you start noticing Victoria was mentally delayed? Has Victoria beena able to attend a regular school or was she placed in speacial education classes?
ReplyDeleteWe just found out last week about our baby's condition, and would love to know what to expect in the future. Thank you for your time and look forward to reading your response.
Mike
Hello Mike! I am sorry for just now getting back with you. Thos is not the most user-friendly site so I quit blogging. I recently have had others contact me that have read my blog and have been conversing with them through Facebook! I have met some amazing people on there too!!! Here are some of the pages:
ReplyDelete2q37 deletion - Rare Chromosome Disorder https://www.facebook.com/#!/groups/134384803241581/
Chromosome 2 Disorders
https://www.facebook.com/#!/groups/chromo2syndromes/
Unique - Rare Chromosome Support Group
https://www.facebook.com/pages/Unique-Rare-Chromosome-Disorder-Support-Group/130797430472?ref=ts
There are more, but this will keep you busy!!! My email is williamsrd08@yahoo.com if you would like to contact me in the future!
I can also be found on Facebook as Denise Anderson Williams or copy and paste:
https://www.facebook.com/pages/Unique-Rare-Chromosome-Disorder-Support-Group/130797430472?ref=ts#!/denise.andersonwilliams
Just found you from Brielle and Me. I don't always write about my son (did not tonight or yesterday) but often do. His diagnosis is not "done" but we're thinking autism and speech delay, although he did not score for autism on his tests. He's very delayed socially and language-wise though. I'm so glad to have found another blog and look forward to getting to know more about you and your daughter.
ReplyDelete