Summer fun

This pic is from our trip down to my parents' house last month. I just rediscovered it on our camera and posted it because I love it: my two girls and my awesome mama, whose own mothering I have learned so much from. Thanks Mom: you rock!

So we've had a lot going on lately. In addition to our consultation about botax and selective dorsal rhizotomy
(which I posted about here: http://galliringo.blogspot.com/2008/06/consultations.html)
we've been busy with fun summer activities like gardening, canoeing, going to parades, eating ice cream...each summer seems to get more and more fun as the girls are better able to appreciate and articulate their experiences.

Here are the girls enjoying a Memorial Day parade, northern New England small-town style, complete with tractors, old cars, fire engines and local marching bands. We went with our good friends and my sister-in-law and her two boys.

And here is our container garden and a few shots of the girls cultivating our first crop: radishes! They were really into pulling them out and but not so into eating them.


We've also been hanging in the sandbox alot, trying to encourage people not to eat or throw sand but otherwise having a great time.



When it started to get really hot, we headed down to the river at the end of our road which is a great way to cool down quickly. The girls love it there: they love to find interesting rocks, walk around in the water, check out the algae and try to skip stones with Daddy (ker-PLUNK!)
And we finally, on Father's Day, we got the girls out in the canoe. It went really well for our first time; the biggest snafu was that Hannah's life "preserber" was really annoying her as it kept coming up almost to her ears and she spent a lot of the time whining that she wanted to take it off. Other than that, they seemed to really dig being out on the water with the other boats, pretending to paddle, and helping us rescue B's shoe when it fell in!


After our paddle, we went to a beach on the same lake and spent the rest of the afternoon swimming and eating ice cream. It was a really special Father's Day.

Negotiating

I think Isabelle should be a diplomat. In this clip below, she's trying to figure out how to switch calculators with Hannah since the top on her own broke. She's pretty good...

Consultations

Last week we went for a consult at a children's hospital near here to learn more about botax and selective dorsal rhizotomy, both of which were recommended by Hannah's physiatrist. We know that SDR is at least a year off but we thought since we wanted to find out more about botax, we might as well ask them about the surgery while we were there.

So here's how it goes when you consult with a specialist about your kid's care: you carry all of this hope with you along with your notebook of questions and you lay it all on their table and pray that they are the ones with the magic answers. That they'll say, "she looks amazing and her case is so mild. We can definitely make this much, much better with our cutting-edge, little to no risk procedure."

Yeah, it wasn't quite like that. But we did learn that it makes sense to do botax first, before considering SDR. That she may do so well with botax, SDR might not be necessary. That if we do think SDR is a good option for her, she would be a really good candidate for it. They ("they" refers to the neurosurgeon, physiatrist, orthopedist and nurse practitioner who were all part of the meeting) said that compared to many of the other kids they work with, Hannah's spasticity is actually not that bad. That she is bright and she has a built-in motivator in Isabelle and she has obviously committed (their words, not mine!) parents who will give her every opportunity to succeed so all of these things are in her favor.

So this was good to hear.

But they also talked about her deficits: not just spasticity but also motor control problems and weakness. Spasticity mostly in her legs but also in her arms to some degree. Problems sitting well independently. Hyper-reflexes. Slight scissoring of her legs. When I asked about her ability to walk without any assistive devices in the future, neither the neuro or the physiatrist was too positive. They focused on "functional mobility" and mentioned forearm crutches or canes.

None of this is news to us but that doesn't make it any easier to hear.

As we were leaving the hospital, we saw a man playing the piano in the lobby. The girls were totally entranced and both sidled up close to him to watch, Hannah in her walker and Isabelle standing right next to her. I thought, "this is what's important: listening to music, hanging with family, enjoying the moment." And that's what I'm going to try to stay focused on.

Hi Oma and Opa!

My grandparents are visiting my parents' house this week so the girls and I made this little video clip to show them. I can't figure out any other way to send it to them other than posting it on our blog (the file's too big for e-mailing) so you all get to enjoy a few moments of a day in the life of Hannah and Isabelle:)

The power of dreams

In general, I'm a pretty avid dreamer. People who know me well (esp my husband who has the pleasure of sleeping beside me every night) know that it's not out of the ordinary for me to talk, walk, yell or do other crazy things while I sleep. I guess that's where I work it all out.

Lately I've been having dreams of Hannah: two were of her walking; just stepping away from her walker and taking steps. And the third and most recent was of her crawling on all 4s (something she has never done; she can only commando crawl). All of these dreams are so vivid and the happy, feel-good-feelings last with me all day.

Who knows, maybe they will come true. But more importantly, I think they're a sign that I have hope for Hannah's future, no matter what happens.

Moving and grooving

Last night after we put the girls down, Hannah started to cry. B went in to check on her and found her standing up in her crib!!!

This is BIG NEWS.

She's been getting from lying on the floor to kneeling all week and she has also been saying, when I put her in her crib for naps, that she wants to "stand in my crib." I'm not at all surprised that now that she can get up from lying down, she quickly figured out how to pull right up to stand.

It's all part of what's been going on with her lately, which is this quest for independence. She's been trying so hard to get in and out of positions and up and down from furniture. She has the notion in her head and can get her body started on the process to making it happen but she often needs help executing.

But last night she obviously didn't need any help at all. And then this morning when B went in to get her, she had pulled her pajama bottoms all the way down to her knees and told him she was trying to take them off.

I have so much hope for where she is headed and what she will be able to accomplish. She is growing in leaps and bounds; she's a mover and a groover!

Quality time

I had the great pleasure of spending Saturday morning with Isabelle while B took Hannah to hippotherapy. Although initially I was a little resistant to separating the girls, these opportunities to be with just one of them at a time have been so special for me. Especially my time with Isabelle. I often feel like Hannah gets more of my time and attention, so it did my heart good to be able to focus all of my energies on Ms Belle for a few hours.

We spent the morning wandering around the metro area near where we live, checking out the live music in the main square (it was the weekend of JazzFest), scoping out the spring goodies on display at the Farmer's Market, and generally doing things on Isabelle time. It had rained the night before so she was big into jumping in puddles and I let her take as much time doing that as she wanted. She also spotted a fountain in the park and let out a huge, "Aaahhhhh" as she raced toward it. I guess fountains are all the rage of the toddler set. We didn't have an agenda and I worried a little that she'd feel short-changed by not having a big adventure like she did last weekend when B took her to the aquarium/science center. But I don't think she did. She was happy and tantrum-free and low-key the entire time we were together.

I'm so glad that hippotherapy forced us to do this "special alone time" thing a little earlier than we may have otherwise, and that it's happening during the warm weather months. There are so many things that I do with both girls and while we all have fun and get a lot out of it, I'm often feeling like neither of them are having the maximum experience. I know, I know...that's life and I'm sure it will make them better people for it (learning to share, wait their turn, be patient, blahblahblah) But the bottom line is that I sometimes feel sad that I never had the opportunity to mother one child at a time, or to mother two children who are typically developing. So these times alone with each girl are really therapeutic for me. And the time with Isabelle is especially helpful in assuaging some of the guilt I feel about the way that she is often sidelined by Hannah's therapies, appointments, and additional needs.

In short, special alone time rocks.