Chips, Cheese and Sometimes Marshmallows

Life with 2q23.1 microdeletion syndrome (chromosome 2)

Chips, Cheese & Sometimes Marshmallows? What? Let me explain, if anyone knows my daughter Asia this completely makes sense:) Not only do we have many medical issues but, food issues are one of our major daily obstacles. You'll see...

Asia's List of Symptoms (2q23.1)

Whether or not all of Asia's Symptoms are related to the 2q23.1 microdeletion is unknown at this time:

At this time her symptoms are: Seizures, Hypotonia (muscle weakness), Development delay, Motor Delay, Language impairment, Non-verbal, Ataxia, Behavioral problems, Sleep disturbances, Short attention span, Repetitive behavior, Aggression, Autistic-like Symptoms, Sensory Processing Disorder (hypo-sensitive), Tongue-tied, Sacral Dimple, Possible Macroglossia (large tongue), Sandal Gap on foot, Constipation, Blepharitis, Hearing loss & Microcephaly.

~This list may be edited with new information~
There are additional symptoms with this rare syndrome that Asia does not have.

Many people contact me to ask what type of testing Asia had to get her diagnoses. Asia had a simple blood test performed which is called a "Cytogenic Microarray". There is a post in the blog that goes over this a little more.

Conact Info and Support Group

2q23.1 Microdeletion Syndrome has a great support group on Facebook. It is a closed group where parents can discuss their questions/concerns about their children with 2q. When logged into FB just search 2q23.1 Microdeletion Syndrome and find the closed group and "join". Also, please feel free to email me with any questions at seasonatwater@gmail.com

Saturday, July 6, 2013

Temporary Draw-on Tattoo.

I posted a little while back about Medical tattooing, writing on Asia with a Marker etc. to keep her safe, because she would never be able to tell anyone about herself. Here is a great idea, it's simple and there shouldn't be any side effects! My sister in law forwarded this Pinterest post to me and it's awesome. Below I have linked the blog that it came from. Cherise has come up with this fabulous idea for a DIY Temporary Tattoo For Kid Safety. This is her image as well. Basically draw with a fine point sharpie or pen, or use temporary tattoo paper-write your childs contact info and cover it with liquid Band-Aid. A water proof tattoo that will last a day or so. Great for going to the zoo, mall, traveling, the park, visiting a friend or family member or even to do when your child has a field trip. I almost wish that the liquid Band-Aid would last longer then a day:) Thanks Cherise!

http://weightdownweightloss.wordpress.com/2013/06/26/diy-temporary-tattoo-for-kid-safety/

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