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

Sunday, August 3, 2014

Freshly Picked Review

I am doing a review! (it still has to do with Asia:) I am so excited to be sharing about this product and company. I highly doubt that you have not heard of Freshly Picked Moccasins but, if you haven't I am so happy to share. 
So, I was sent an adorable pair of platinum colored moccs for Asia to try out. Excited because they really are so cute and I hoped that they would be great for her but worried that they wouldn't work. Being special needs we have to be selective about her shoes for various reasons and it often eliminates a lot of the fun stuff. I also waited a little while to post this because I really wanted her to try them out.

When I was selected to do the review they had me send in a size, and color request. I will start with sizing. They have a great little tool on their website, it is under links and its called "sizing". Use it. I didn't the first time and I had to exchange. If you use the link it's a perfect fit! It was different than the shoe size I buy her. Color, if you see one you like order it. They sell out so fast, I learned the hard way but LOVE the color I received. The company was so easy to work with on the exchange and completely willing. I am showing a couple of different outfits because she can wear them with anything! 

Short story...when Asia was a baby, she was so chubby that I couldn't put shoes on her. Seriously, she was huge, I don't think she wore shoes until she was 2+.  Her foot was taller than it was long:) I am convinced if this product was around then, they would have worked for her! Because of their elastic design at the opening I think they would fit any foot.  

Asia can not put on her own shoes. These shoes are so easy to slide on and off that she actually tries to do it herself. She's not quite there yet but I think she sees the opportunity in them. (she can take them off) When Asia throws a tantrum she loves to take off her shoes and socks and throw them at you...bonus points, these don't hurt;) Asia doesn't mind wearing these shoes, they are so soft and flexible I wonder if she even knows she has them on. They also stay on, honestly, they don't come off on their own. She seems to love them and when I ask her to go get her shoes these are the ones she looks for. I actually bought a pair for my 2yr old and he feels the same way-he loves his moccy's and leaves them on his feet all day. He's different from Asia where he can run and play hard all day and he can do this in his moccs-they hold up great.
 Asia has braces for her feet/ankles. If she is going to do a lot of walking I usually put her tennis shoes on but her foot brace actually fit into these moccasins. The brace was not secure, it moved around a bit-I think because the brace itself was slightly smaller than the moccasin. Because of the elastic design I bet they would take a ankle brace but I haven't tried that one. If I am putting braces on her she's not wearing these shoes-for me these are for comfort, warmth, protection and small amounts of walking. If you look at the picture though, you can see she wears them a lot from the foot print on the bottom:) 

While I was taking a couple of shots of Asia she saw a little 2yr old boy walking by with buzz light year wings-he was kind enough to "share" and look at that happy face. Thanks Easton!

I can't say enough good things about these shoes. Sizing ranges from 1-10 for kids, this is the only down side, she can't get them forever. They carry colors to match just about anything. Right now there is limited edition shirts and Freshly Picked just started selling a carry-all, which is on my list. Link is below!


Thank you Freshly Picked!

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