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

Friday, September 6, 2013

"Chewy" Friendship Bracelet

This summer on one of our "adventures" we stopped by a Fremont Indian Museum. While we were there, I bought all of us a few of the knotted and beaded friendship bracelets. I noticed that Asia was chewing on hers all of the time. I kind of thought "that is cool" because it kept her from chewing on her arm and clothing. I decided I would try and make some for her. I thought since she was "chewing" on it I might as well try and find some "organic" embroidery floss. I discovered that it is seriously hard to find! I found two different shops on Etsy and ordered some from each just to compare. One shop is located in the UK and the other in the US. Here is my first attempt at making her one (its not perfect)...I might make the next one a little wider and order some darker colors. Maybe practice some new pattern skills:) The cost is low and I can easily make more when needed. When she saw it she asked me to put it on her-she started chewing on it within seconds of putting it on her arm. I don't know how long it will last or if it's very good for her to chew on but, I figure it can be any worse then her shirt and it protects her arm!

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