BATH!!!!!

Okay, okay, so my attempts to upload this video have been thwarted long enough!!! I finally just decided to put it up on YouTube and provide a link: http://www.youtube.com/watch?v=kOQLp_Co5Bc&feature=youtube_gdata I just wanted to put this up for fun and to share one of Noa's great pleasures... the announcement of bathtime! Noa has been doing great stuff and I'm hoping to get more recent photos and news posted soon soon (this is probably about a month old). But as you can see, she understand immediately when Ben says "bath" - and she does the sign - then once she finishes her celebration signs that she is ready to "stand up."

Worth the Wait!

Wow, I can't believe I haven't posted since January. Real life just totally took over blogging life - guess that happens.

But Noa has been doing some amazing stuff in the past few months as this video will demonstrate. As you will see, she lets go of her walker for extended periods of time to sign - and looks very comfortable doing so. She's at that place where she doesn't even realize what she's doing - she is just focused on what she wants (in this case a toy called "hook" that vibrates) then she's perfectly comfortable. The walker gives her more confidence then trying to stand when she is holding our hands because if she loses her balance she knows where the walker will be.

She is also doing a lot of new signs and talking up a storm. I will will will try to get more stuff up because it's really wonderful. A few weeks ago we started a new plan: work on just two signs per week, and it's made a huge difference. She was learning so many signs in so many places and sometimes picking up stuff that she thought was a sign, but in fact was just someone doing a gesture (she's a sponge like that). So, while she may get a number of new signs in a week casually, we focus on two that at school, at home, in therapy we will also try to use.

Last week she did something amazing - she totally unprompted traced a circular cut-out on her chair and said "circle" (yes, said out loud!)

A few amazing things about this -

1) it was not prompted, so she just recognized the circle and decided to tell us about it - which is very unusual. She tends to just talk when she wants something. This was just to share!

2) she made the connection that it was a circle. She loves sorting shapes, and so she'd been checking out a lot of circles - connecting that all these things are circles is a huge conceptual leap for her.

So for now - enjoy this great step forward for Noa-kind, and I will try to get more up in short order.

Christmas and Communication

As usual, having some weird problem uploading video, so we'll just make it easy and start with some still photos.

Noa did great with her presents this year. New items have been a challenge for her in the past - so present opening can be a lot pushing things a way and signing "finished." This is actually a common issue for CVI kids - they tend to prefer known objects to "novel" ones.

Last year Noa took to two or three of her gifts and we called it a great success. This year, she took to nearly every new gift and even participated in some unwrapping (though I'm not sure she entirely got the concept that the gift was under the wrapping, she seemed to enjoy the sound and feel of ripping bits of paper off and handing them to me).

In the photo above she is trying on a new scarf that she really loves playing with. The big-eyed pink fish by feet vibrates (and works in the water!) - loves that too. In so many ways Noa did extremely well and was very patient - sitting and playing while others opened their gifts. She loves being around everybody - all the chatter and chaos and excitement.

She also did a terrific job walking up and down the stairs at Grammy & Grampy's - something Ben and I were a bit nervous about because frankly, I couldn't carry her up and down the stairs (I'm better, yes, but trying not to injure myself quite yet) and Ben couldn't have done it all weekend by himself either. But Noa really seemed to like doing the stairs (even going down which is a much bigger challenge).

While her communication has been improving steadily - and she is even trying to use her words (vocally) without signing) we really struggled with some frustrating communication issues. Noa has a handful of signs and vocalizations that clearly mean something to her... but nothing to us and she gets EXTREMELY frustrated when we don't understand.

The big one is some combination "Shaaw" and "ShEEE" - ususally accompanied by her petting my hand, or as she gets more frustrated poking me with her finger, and then maybe slapping something as hard as she can and screaming like someone set her fire. It stinks. And it's really difficult because she so clearly knows that she wants. We have tried a million ways to figure it out and just don't get it.

She will also sometimes slap the palm of her hand with two fingers really hard and say "shaw" or "shee" - almost like a piano teacher wrapping a sloppy student on the knuckles. And the other sign is twisting her finger back and forth either on her cheek or her forehead (its not "apple" - a few people have guessed that already). Yesterday she actually took my hand and put it in the right position - like was trying to teach it to me and that might help. I nearly burst into tears, poor thing! She is trying so hard. I'm sure we just seem as dumb as doorknobs to her!

The problem is that sometimes she'll pick up some sound or gesture at school or at home (something we don't even know we're doing), and will interpret it as a sign. For example, at school they have this great little mechanical puppy that barks and flips when you press a button. They sent it home once (which makes it something that she might ask for at home because she knows it was there once before) - and suddenly she was doing this strange new sign that looked like pushing a button and saying "ooke, ooke." Again, big frustration, no one could figure it out. Then she started doing it at school too. I talked to her teacher who wondered if it might be mechanical puppy - which made sense. The sign was pushing the button and "okee" was probably what everyone said when they gave it to her: "okay."

To test it, I suggested that we give the puppy a name (Spot) and teach her the sign for "s" to go with it. "Okee" wasn't going to be a good name for the toy, it was too confusing since it sounded like Okay. We tried it, and within one day - truthfully - the entire thing was turned around. I think she was just as relieved as we were!

As painful as this is, we are also experiencing a big surge in overall communication that has been successful and satisfying for Noa. AND just before Christmas we started working with a private communication specialist who comes to the house on the weekends. Hopefully she will help all of us to navigate some of these more difficult moments. It's so interesting to watch Noa with someone who is really communicates with sign proficiently. She just pays atttention in a whole different way.

Unfortunately, she started with the whole "shaw" routine just as we were sitting down to Christmas dinner, and so ended up playing in the toy room by herself. Again, difficult because everytime we tried to pull her chair away from the table she would scream and hold on to the table even tighter - she wanted to be there with everyone. But she couldn't pull herself together, and we couldn't figure it out. Luckily, it didn't take her too long to realize that she'd be better off playing with toys then screaming her head off at the table and after a while was entertaining herself happily.

So Christmas was successful, but also challenging in a lot of ways. While Noa had a great time being in the mix and really enjoyed her presents this year, it was also clear to me that as Noa gets older, there are new challenges as well. I've always tried to kind of fit Noa into what everyone is doing with the least possible intrusion - but I'm not sure that really served me well this time around. But that is perhaps a different subject and this posting is getting long enough!

I leave you with this lovely photo of Noa wrapped her new Christmas scarf. Hopefully I will get some video posted later - !

Happy New Year!

I'm baaaaccck!

Phew, it's been a busy and long month-and-then-some. A lot to update, but try to get to it over the next couple of days (esp. Christmas of course!). I'm glad to say that I'm feeling great. I had surgery on November 15th, have been fortunate enough to heal pretty quickly and double-bonus-fortunate to escape this whole thing without having to radiation or chemo or anything that would get in the way of me just continuing to heal. As you can imagine, this is a great relief in so many ways.

Not picking up Noa for a month was plenty challenging - but probably more challenging for me than it was for Noa. She took it all pretty well. The first week the place was like a parade of all her favorite BFF's - plus a visit from Grammy - so she loved that. And the following week was Thanksgiving - with my whole family in town. The center of attention is just the place Noa likes to be. It really wasn't until the weekend after Thanksgiving that Noa had her first only-Mommy-will-do breakdown and by that point I could hold her hand, and that seemed to help (I had to be careful of even getting close to her at first because one of her favorite games is to slap people and make them say "ouch").

Thanks to everyone who helped out - I'm still overwhelmed when I think about all the love and support that kept us moving forward those first few weeks.

For those of you who don't know, part of the surgery was a breast reduction - something that my doctor had recommended over a year ago as something that might help me deal with my chronic shoulder pain. I'm very pleased to report that already that has made a huge difference and for the first time in a year I feel like I have to potential to feel physically better... which becomes increasely important as Noa continues to grow, and Ben and I continue to get older and more tired. We are hoping that 2011 will bring walking for Noa. We're going to do all we can to really try to get there before one of us snaps in half!

More to come soon!

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!"