Ride 'Em Cow Girl!

Noa had a great time at this year's Halloween Parade in her Cow Girl Costume!
Noa loves her Cow Girl outfit - from the first moment I tried it on her she understood that it was special and she jumped up and down and did her happy dance song (which is basically yelling).


Noa was so excited to walk around in her costume that she walked the parade route twice! She did the whole thing once before the parade had even started!
Noa loves being the mix - all the people and the laughing and excitment - she is really a "girls just wanna have fun" kinda girl. One of the things that is really nice about our building is that so many people know Noa and everyone was so impressed to see her walking so confidently. She got a lot of cheers and compliments and you can really see that it energizes her.


Kudos to Melissa who suggested Noa go as a cow-girl, Andrew who helped us get Noa ready and joined us for the first spin around and Jes who taught Noa how to say something that is sort of like "Trick or Treat" and "Boo!" We did take Noa to a neighbor's door. She said her version of Trick or Treat, selected a piece of candy and threw it down the hall.

Then we went down the hall where they have a huge Halloween Party every year. Although she's done okay at this party in the past - this year she was thrilled to be there. She did her happy dance (with screaming) and gave Ben and I big happy hugs.

Verdict? Best Halloween Ever!

A Blip on the Road of Life

Hi Everyone! You may have noticed that The Land of Noa has been somewhat silent lately. The truth is that events in the The of Jeni have overtaken my ability to keep up with this - and that will probably be the case for a few weeks.

Long story short, a few weeks ago diagnosed with very early stage, non-invasive breast cancer - having surgery on November 15 which may be followed by radiation (will know more once they get a chance to really look at what they take out). Of course this is all happening very fast and has left me scrambling to take care of things in the real world... while the virtual world just kinda hangs out waiting for me to catch up.

In addition to having them remove the Cancer, I'm also having a breast reduction. Why post this in the Land of Noa? Because actually, I've been dealing with some really bad shoulder pain for a year now due in great part to all the lifting and working with Noa and my orthopedist had actually already mentioned this as something that might help me - so it seems to have all come together to make this the right choice for me.

In terms of how this affects the land of Noa - the biggest, most immediate impact will be that after surgery I'm not to lift her for a month. This is difficult. Sometimes when I talk to people about the challenges of a physically impair child they say, "oh I know, little such-and-such likes to be picked up too." But truly, its just a different ball of wax when you have a 40-lb child who cannot get out of bed herself, cannot get from her blocks to the couch. Not only did it ultimately get me to the point of serious injury, it also means that to replace me for a month we have to pull together a small army of new Noa BFF's and HUGE thanks to all those folks who have stepped up. It is no small deal!!!

Noa BFF's have to do three days of training to be able to hang with her (kind of like training to work at Chili's). They have to learn her signs, how to stretch out her legs when they hurt, how to not hurt themselves picking her up and moving her, how to make sure she gets some exercise and how to make sure she doesn't hurt them (because throwing blocks at people and slapping them is a much favored game right now). So kudos and thanks to those brave souls!!!!!

My biggest concern is that she has been having a lot of discomfort in her legs. It started when she outgrew her leg braces and it's taken a long time to get news ones (we hope to have them next week). Without the braces, she doesn't walk as much - and the braces keep her hamstrings stretched out. Walking keeps her hips stretched out. When she doesn't get to walk enough, her body just doesn't send enough blood to the legs so they crap or get pines and needles - or - something - honestly we don't know what. She can't tell us so she screams bloody murder (seriously, I'm waiting for child services to show up - its like she is being stabbed) and thrashing around and we just try every stretch we can think of. Of course, I won't be able to help with this soon so I'm really really hoping the new braces come soon and that they help this somewhat. As you can imagine hearing your child scream in pain for an hour is challenging enough without the extra bonus of being entirely helpless in terms of even trying to help!

SO that's where we are this week. I have actually a blog now for my own upcoming journey:
www.carepages.com/carepages/jenimahoney
I suspect that most of my posting for the next few weeks will be on that site. Also, Ben will be able to update the site and let folks know when I'm out of surgery, etc...

Thanks to everyone for all their help!

All Work, All Play, Means Noa Has A Busy Day!

I can't believe September is nearly over! And look at Noa, she already looks like a big kid with her pig-tails. She doesn't usually keep them in for long - as with most of Noa's games it's more about asking you to put them in and then asking you to take them out. She continues to enjoy finger toys, and now we have some rubberbands that have also become finger toys.

In this photo Noa is doing the sign for work, which she learned at school. Noa's transition to Blythedale has been just great - she really loves it there and is already thriving. They always warn you, especially with special needs kids, that they will probably lose some ground in a big transition like this, but that certainly hasn't happened in this case - and it's a big change and a long day. Noa leaves for school at 8am and she doesn't get home until 5pm! But she comes home totally happy. She even seems to like her bus driver and matron, and Noa's teacher Meredith said that some older kids on her bus were asking about Noa's zuzees - the electric toothbrushes she likes to play with - and she introduced Noa to the other kids and showed them how to understand her and they were really into it.

I have to really commend the folks at Blythedale for really taking the time and making the effort to work with Noa on her terms. They are a rehabilation school, but not a school for the blind (though they have other VI students and a wonderful VI teacher, and as it turns out there are other VI kids in her class) - and we were a bit concerned about Noa being in a class with kids who could see, that she would be left out or just sitting bored (or screaming and hitting), but they've done a great job of including Noa and she's made quick and wonderful connections with her teachers and therapists.

In fact, when Ben and I were there for Parents Day Meredith was reading a book to the kids and even though Noa couldn't see the pictures, the teacher and the aids helped her figure out how to do the activities that went with the story, and as a result Noa really seemed to be trying to listen and understand - she got that this story meant something, and seemed to really be trying to figure it out.

I also wanted to share a bit from a wonderful note that Meredith sent home with Noa the other day, it truly brought a tear to my eye because it's such a wonderful testament to how well Noa is doing:

"There are some new students joining us and Noa has taken on a leadership role to demonstrate our activities to them. She was very happy all day!"

Family Fun

We had a great time this weekend down at Grammy and Grampy's house in Maryland! As you can see, Noa is having a great time playing blocks with Aunt Leusia, sharing her toys with her cousin Elecktra & doing sign language with Aunt Pate.

It was actually the first time that we felt like Noa really was able to be a part of the playroom action. She really seemed to love the energy of being in the room with the other kids and all the ruckus of cousins running and laughing and throwing things (Noa being the queen of throwing things).

Noa's cousing Abby invented a new toy for Noa - little rings made out of string - that Noa absolutely loved. We decided to call them "finger toys" (I've been trying to think of names for toys that will help Noa learn the alphabet and F is a letter she doesn't know yet and one that is very specific). Noa learned the sign in one shot and asked for them consistently all weekend - and all the way home. When she is motivated she is fast!

Also, because Noa's signs are becoming clearer and her ability to communicate (i.e. her patience) is deepening, she was really able to communicate more clearly with her Aunt Pate who actually knows sign language, and that makes a HUGE difference - not only for the two of them but for me and Ben as well because we felt very comfortable leaving Noa with the family while we went out to our friend Matt's surprise party.

All the way home, Noa signed for Grammy - which was very cute. She really enjoyed spending time with family and she's really starting to have wonderful, special and individual relationships with everyone which is just lovely.

Rock On!

So yesterday we decided to check out this new playground down at South Street Seaport that was supposed to have all sorts of creative interactive stuff for kids. It's always hard to know if these places are going to have stuff for Noa, but we figured the bus ride would be fun and if nothing else we could go down by the water and feel the breeze.

As you can see from the video, it turns out it the place was a real success and Noa had a great time in spite of the fact that she really couldn't play with most of the stuff there. Nearly the entire playground is in sand, which is great for most kids, but not for kids in wheelchairs and not kids who can't really walk (sand is hard to walk in), so we carried her into the sand but as you'll see if you go to the "Toss On!" video below she had a great time once she was in the sand.

In this video we're making good use of the foam blocks which are actually kind of neat.

Most of the stuff required being able to see and appreciate that you could put sand in this or that and then pully it over here or there; or stack these big foam blocks into a maze you could roll a ball in... stuff like that. But the great thing about where Noa - and her current sense of adventure - is that she really seemed to get that we were someplace special where you try new things and she was very open to that and she likes the sound of other kids playing and all the ruckus that goes with the playground.

And of course, we took her out on the Pier when we were done at the playground and she loved the wind there - wind is one of her favorite things. I was concerned that she might get cranky leaving the Pier (it was getting on 7pm by this time), but luckily the streets of South Street Seaport are cobblestone, so the fun bouncing helped to make up for the lack of wind in her hair. All in all, a great family outing!

Stomp On!

One of the cool things about this nifty boardwalk that created kind of a half-circle around the playground was that it had a little give to it. Not much, but enough that I think it gave Noa some fun feedback when she stomped on it. She's pretty sensitive to that kind of thing. She walked the entire boardwalk holding onto the rail with one hand, and Daddy with the other.

Toss On!

Toward the end of the summer session, Noa's teacher told me how much Noa liked playing in the sandbox when they went to a local playground and I was surprised. We had tried sandboxes in the past, and had been to a few beaches, and Noa never really went for it so this playground - which was covered in sand - was a great opportunity to see for myself if she really like it. I think the video speaks for itself.

We will be working of getting the sand out of our hair, off her wheelchair and out of the house for a while I think. She was really generous it.