Friday, December 6, 2013

Christmas Wish List 2013

Twice a year we are asked about what kind of gift Rae might like to receive and honestly sometimes we don't have a clue. She has tons of toys, some of which she loves, some she can't really play with, and others that she is actually scared of so we don't' really play with those. She has a closet full of clothes because I feel it is one of the few things I buy for her that doesn't cause me anxiety (unless it's shoes that particular purchase has reduced me to tears). Everything else just seems a bit expensive or too practical (I love giving useful gifts) to suggest as a gift.

So, here I sit trying to think of things that Rae may enjoy or need (you can also check out this list).

1. A Portable DVD Player. We are in the car or waiting in doctor's offices a lot. It would also be helpful for those mornings when she wakes up at 3am and the only way to keep her calm is with Little Einsteins or Doc McStuffins.

2. A Tablet C Clamp Mount: This is the most practical gift for Rae. It will attach to her wheelchair (or table) and hold her iPad so she can use it without knocking onto the ground (she did just this over the summer and we the glass shattered).
This would have totally prevented the damage below.
I taped the corner with painter's tape so we could safely
 use it until we could get a replacement.
3. Knee Socks!!! Any kind, any color (especially neutrals), and pattern. They work great under her AFO's and are a big pain in the butt to find. If I find them I snatch them up because she wears them almost year round and you can't find them easily in the summer. What makes this a difficult item to find is her foot size (6 to 7 toddler). Leg warmers are also awesome!

4. Books! Almost any story that has a rhythm to it similar to Dr. Seuss (but she isn't too fond of him just yet, I've tried, she gets antsy after a few pages). Another example of a great book for Rae is the Llama Llama series (we have them all). 

5. iTunes Gift Cards. I know everyone isn't really comfortable with giving gift cards (I don't really like giving them either), but sometimes this really is the most practical thing for Rae. She has an iPad for entertainment and we are working on finding a communication app for her (there are SO MANY!) until we can acquire a Tobii. Right now she watches her shows, plays with ability/age appropriate apps (but loves listening to me play Angry Birds & sometimes she helps), or goes over flashcards/vocabulary.

6. A Lava Lamp (purple or pink): We think she'll like watching the lava float up and down in the lamp and it might also be a good alternative for her semi-bright table lamp when she wakes at 3am.

7. A Non Slip Table Mat: This helps keeps her toys from sliding off of her trays which can be very frustrating for her. They come in circles or rectangles.

8. Movies/TV Show DVD's: This is the first year where we have noticed an increase in her engagement with movies. Last year I tried to watch Rudolph the Red-Nosed Reindeer with her and about 10 minutes in she was screaming and obviously over it (which broke my heart because it's one of my favorites). This year she stayed alert and engaged through the majority of the film. She didn't scream once (except when she was laughing). I was thrilled!! She also loves Daniel Tiger's Neighborhood, Little Einsteins, Doc McStuffins, Princess Sofia, The Muppets (especially Animal), and South Park/Family Guy (don't judge…she likes strange sounds and physical comedy). She already owns some of these so if you aren't sure just call me (family/close friends…I am not soliciting gifts from my readers).

9. Nothing. Seriously, you don't have to get her anything. If you see her give her a hug, tell her hello, and smile. If you have some chocolate or cake, she'd love to help you eat it (and maybe a nip of your finger). If you only know her through this blog that is enough for us because we're about raising awareness of Rett Syndrome and Hypotonia and you are a part of that effort.

We have been very fortunate and blessed (which doesn't mean we don't struggle) to have our needs meet beyond the minimum. We have great friends willing to pitch in and help us raise funds and build a ramp for Rae (and donate towards research too). We have a roof over our heads and food in our pantry. Rae is relatively healthy and extremely happy. She doesn't want for much and that's a wonderful thing.

I hope you all have a Merry Christmas this year!

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