More notable quotables from Ms Isabelle; inchstones

1.) The other day I was doing some dinner prep. I told Isabelle and Hannah that as soon as I finished we could go out and play until B got home. The recipe was online so in between adding ingredients, I kept walking back and forth to the computer to see what the next step was. Isabelle asked what I was doing and I said I was checking the recipe.

I went back to the stove and Isabelle made her way over to the computer, peering at the screen. "Does the recipe say it's time to go outside yet?" she asked.

2.) Tonight I made minestrone. Isabelle loves soup. She practically jumped into her high chair in her excitement to eat it, which if you've ever tried to get a toddler to eat you know is totally astonishing, especially when the meal contains all manner of veggies and even beans-yegads!. As she shoveled it in, Isabelle turned to me and said, "This is a nice dinner. Thanks for making me soup, Mommy." What a love.

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Inchstones: I picked this phrase up from the blogosphere and think it's such an apt way to describe the developmental progress of children with special needs. Often the gains are so small, so slow, that they're easy to miss. They could almost be millimeter-stones instead of inch or milestones. But they happen; they're happening all the time. We just don't always see them as our eyes are often focused elsewhere: on treatment options, therapies, medications, etc.

I've been frustrated lately because Hannah has been in a bit of a developmental plateau. Understandable: the kid has all kinds of new gear to figure out and is also still working on her two year molars (I know this because she clenches her teeth all the time and just wants to suck on her sippy cup of milk all day long). But in the midst of this plateau there have been some peaks and valleys that over the past day or so I've been honored to witness.

Here are a few:

-Transition movements, as I've mentioned before, are hard for Hannah. She can sit well without support but can't get from lying on the floor to sitting. The other day when the PT was over, Hannah got almost all the way up from the floor on her own. It was so exciting, neither of us could believe she was doing it.
-Lateral cruising: Stepping from side to side, especially with the left foot, is also hard for her. Yesterday she was standing in her crib and side-stepped to the left so that she went from facing the wall to facing the door. Then she lowered herself down into a crouched position and pulled herself back up again.
-Turning the walker: We've tried the swivel wheels on Hannah's new walker but she hasn't been able to figure them out yet. She's still going around in circles. The PT thought she might have more success learning how to lift the front wheels, pick the walker up and then turn it. Sure enough, she's managed a few times now to pick the wheels up off the floor. She hasn't quite mastered the turn yet but I think she'll get there soon.
-Getting back to the floor from standing in the walker: This is key: being able to lower herself safely to the floor when she's in her walker gives Hannah confidence that she is in control and will not get hurt. Now we just need to get her to pull herself up and then she will be totally independent in it: AMAZING!

These are just a few of Ms Hannah's latest inchstones. I need to be sure I keep recording them because they are such good reminders to me when I'm feeling down and out. She is moving forward all the time even if the pace is slow and slightly unsteady.

Row row row your boat

B and I love canoeing. It's one of our favorite summer pasttimes. So when we talked about our future kids, we always envisioned taking them on exciting paddling adventures. Finally after all of this time, we think the girls are ready. We've been talking to them about it and today we got the boat out and let them play in it and try on their new life preservers. We hope to get out tomorrow if the weather's okay. If not, definitely soon. Can't wait!

The heartbreak of playground season

The summer-like weather we've been having has been really therapeutic in a lot of ways. It feels good to be outside so much and the girls love it. But with it comes playground season and this is always a mixed bag for me.

Today I met some friends at a playground near us. They were excited to show me this one as we hadn't been to it before. As soon as we pulled up, my heart sank. The protective "stuff" they put below the equipment was recycled tires. From an environmental and safety standpoint, probably a very good idea but have you ever tried to push a walker or a wheelchair through that? It's like running in soft sand. And the play structures themselves were these hemmed in mini-towers with ladders, tires to step across, gangways all interconnected and next to impossible to penetrate with any kind of adaptive equipment. At the entrance to the play space there was one long ramp that was wide enough for Hannah's walker, but once she got to the end there was nowhere for her to go. The novelty of walking back and forth across that while everyone else climbed and scrambled and scurried wore off pretty quickly.

While I was trying to help Hannah maximize the experience, Isabelle kept coming over and grabbing my hand, asking me to help her check out all of the structures her friends were on. I don't blame her: they were pretty cool. But I couldn't leave Hannah so Isabelle had to stick close to where I was or swing on a swing. My friend J was great about helping Isabelle try out some of the equipment and kept checking in to see if I needed help which I SO appreciate. But on some level it made me even more frustrated that I need help and can't take care of my girls on my own.

On top of all of this, Hannah was (and has been for the past week or so) particulary unmotivated and cranky. She hasn't been eating or sleeping great and I think she's working on her molars again. Isabelle is in the same boat but she has the strength and coordination to push past that and plow ahead like a typical two year old. Hannah on the other hand just wants to be carried or walk holding my hands with little or no interest in pushing her walker.

I thought I was getting better with all of this stuff. I had been so excited about the gains Hannah has made and felt so hopeful about the future. I guess it's the same as her own developmental progress: two steps forward, one step back.

How does your garden grow?

We have had an absolutely amazing string of days here in the Northeast. We went from snowflakes to full-on summer. I know it will go back to being cold again but for now, I am LOVING the warmth of the sun and the ease of caring for little ones when you can be outside all day.

I bought some seeds to start indoors and had the girls "help me" a few weeks ago. They wake up each morning, see the little sprouts and exclaim "They're growing!" It's really cute. Of course I planted waaay more seeds than we'll ever be able to put into the garden but that's another story. For now it's just about giving them a little light, a little water, and a lot of love.

Medical update

We had our second meeting with the physiatrist on Tuesday. I was dreading it because the first time we met him, I found him to be pretty arrogant and unapproachable. This time, he was much more easygoing and I felt more confident about our ability to work together to get Hannah what she needs. He did have a 4th year med student with him, so maybe he was on good behavior, who knows?!

We talked about a lot of things: Hannah's adjustment to her new walker and AFOs (really good), her range of motion (good), her hip X-rays (fine right now). I brought up some concerns: she is doing a lot of in-toeing on her left side and she is swaying to the side in her new walker because it's wider than the old one. I wanted to explore hippotherapy (therapeutic horsebackriding) and also whether or not we can up our PT hours for awhile since Hannah has a lot going on with her new equipment and it would be helpful to have some more tricks and skills to adjust to.

Some of the take aways:

• We're going to get authorization for hippotherapy which will be covered by Medicaid: horray! We just have to wait for a spot to open up and we hope that we can do it on Saturdays so that one of us can take Hannah and the other can take Isabelle for some special kind of one-on-one adventure.
• We're going to get pelvic supports for her walker to keep her hips from swaying out so much. We're also going to get swivel limiters so that she can learn to turn without just going around in circles.
• She is a good candidate for a botax injection in her left calf. This should help her get her foot flat on the floor and stop the in-toeing. I'm a little surprised we're there already but I have noticed her struggling more and more with her gait and if this can help then I think it's. I do want to do some research first because there's been some discussion about doing serial casting as an alternative to botox for managing spasticity in kids with CP.

• The doc also mentioned selective dorsal rhizotomy, a neurosurgical procedure done on kids with CP that can permanently reduce muscle spasticity. They've been doing this surgery since the late 1980s and with some really good success. It's not something we would do right now, but in the next few years (between 4-5 years old). It's pretty major surgery and it's a lot to digest. The good news is that he thinks Hannah is a good candidate because she has so much potential to gain from the procedure. He's not suggesting it because it is a last resort; rather, it's an option available to her that could permanently and dramatically improve her overall muscle function. But I still need to get my arms around it which is why I'm glad he mentioned it now, when we are in no rush to make a decision. We're going for a consult at Dartmouth Children's Hospital at the end of July and may try to set up a meeting with the pediatric neurology team while we're there, to learn more about the procedure.

So we have our homework cut out for us. We have a lot of research and thinking to do. I am realizing more and more that parenting a child with cerebral palsy is a lifetime process. There will always be new challenges to work through and figure out. Therapies, surgeries, medical equipment, integration into the community, development of a positive sense of self...so many layers of Hannah's and our lives are impacted by CP and always will be.

The not-so-welcome wagon

We decided that we wouldn't send the girls to preschool until Fall '09, just around the time of their 4th birthday. They will still have two years of preschool under their belts before kindergarten and it gives Hannah another year to gain more mobility.


But I thought it would be a good idea to call around a few of the local places to get a read from them on when we should consider visiting and applying based on waiting lists, etc. I want to be fully prepared because with Hannah's extra needs I know we'll need more time to figure everything out. I also wanted to get an idea of how much experience each place had working with kids with mobility issues.

I called one place today that I've heard great things about and after checking out their website I feel like it would be such a super cool place for the girls to go to school. First I just asked them what the timeline was like and when we should think about visiting, etc. The woman who answered the phone told me that they don't do anything until after the holidays so in Jan 09 we'd start visiting and applying. Then I told her about Hannah's CP and asked if they had any experience working with kids with physical disabilities.

She said that she's been there for 18 years and that she hasn't dealt with any kids with physical disabilities. Then she asked what her specific needs were, whether or not she was potty trained, and how much extra attention she would require. These are all valid questions, but her tone was very abrupt and a bit harsh. For example, she said, "So what are her physical needs, because we only have 1 teacher for every 7 kids," in this very direct and slightly hostile way.

Then I asked if, as the parents of a child who had additional needs, we should consider visiting/meeting with them earlier than other parents so that we could discuss how if at all they might accomodate Hannah. The woman (I think she's their admin person) said, "well, you
should visit before we dedicate time and energy to sit down and meet about her needs, because we may not even be the right place for her. We do tons of IEPs all the time and it's too much to go through all of that if you decide it's not the best environment for her." (IEPs are individual education plans, contracts between parents and schools regarding what will be provided for children who have special needs)

I said that was fine and hung up with her, and immediately felt angry, sad, and belittled. It could just be that this person isn't the most warm/fuzzy person on the planet and her direct and efficient personality just rubbed me in the wrong way since I'm so hyper-sensitive about Hannah. But whatever it was, the conversation totally crushed me. I feel like I was this naive mom who was being given a "talking to" from a hardened veteran about the realities of
trying to find a place in the world for my amazing and also challenged daughter.

I know this is only the beginning, in terms of experiences we are going to have like this. I had decided to approach these kinds of conversations with an open mind and a positive attitude, and silly me that I just assumed we would be welcomed and respected even from places that ultimately decided they couldn't accommodate us/her. But I got the distinct sense from this woman, just in the way that she said, "Oh, yeaaaahhhh..we do toooons of IEPs" that this was not something she embraced and might even be a thorn in her side.
I have these visions of what I want for my girls from their learning environment. And I never really anticipated (or allowed myself to anticipate) that those environments might not
want my girls.

March for Babies

On May 3, we'll be walking for the third year to raise money for the March of Dimes. This has become an important family tradition; a way to honor our journey through prematurity and celebrate our amazing girls. Please go to our webpage to help us reach our fundraising goal: this organization does such important work and your support is critical to helping many more babies and families.

Thanks!