Saturday, April 26, 2008

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.

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!

Monday, April 21, 2008

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.

Wednesday, April 16, 2008

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 many layers of Hannah's and our lives are impacted by CP and always will be.

Tuesday, April 15, 2008

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.


Friday, April 11, 2008

Favorite Things

I need to take a minute or two to brag about my girls because lately, their verbal skills have been really astounding me. And because a lot of the time I am focusing on the things Hannah is not able to do (YET!), so I neglect to mention the amazing things she and Isabelle both can do so well and with ease.

So the girls are 31 months old (2 1/2). Here are a few examples of some of the things they're saying these days, and I should add that they are both very clear and easy to understand:

Isabelle: "When someone is using something, we wait to take a turn."
Hannah: "Only Mommy and Daddy use the outlet. It's for adults."
Isabelle: "I can't wait to see you, Papa. Papa lives in Delaware."
Hannah: "We learned how to do that at story time today."

Hannah, reciting from memory from her new favorite book, Olivia and the Missing Toy, which we read at least twice a day: "It was a dark and stormy night. Olivia was practicing her piano when she heard a HORRIBLE noise."

Isabelle, singing Favorite Things from the Sound of Music soundtrack, another HUGE hit in our house: "Raindrops on roses and whiskers on kittens, bright copper kettles and warm woolen mittens. Brown paper packages tied up with string. These are a few of my favorite things."

I love my girls and I think they're just amazing.

New walker tricks

Here's a pic and a clip of Hannah in her new walker. In this first one you can see her using the fold-down seat. I'm so glad we got this option: it's great for her to be able to walk up to something and then sit down in front of it if she wants to play with free hands. Right now we have to get the seat down for her but hopefully this is something she can figure out on her own soon. It will also help when we're out and about walking around and she gets tired. Instant seat!

And in this video clip, Hannah's trying to figure out how to get the swivel wheels to go the way she wants them to go. She's still working on that but having fun trying! She cracks herself up when gets herself going in circles. She's not wearing her AFOs in this clip but the difference when she does wear them is amazing: her gait is steady and strong. I'm also noticing that her tone in her legs seems to have reduced and she is more loose/flexible. I don't know if it's because the AFOs are stretching her legs when she wears them or because she is walking more so she's getting stretched that way. Whatever the reason, it's so nice to feel how relaxed she is.

Wednesday, April 9, 2008

Good day, sunshine

I think spring is finally here. Shh...don't tell anyone or it might snow again. But it's been in the 50s and sunny for 4 consecutive days and all of the snow is gone from our yard. We've been spending a ton of time in our yard and it's like a whole new world has opened up for the girls. They are so much happier when they're outside in the fresh air (and so am I!)

Last spring, when my back was breaking from carrying and walking Hannah all around the yard, I told myself "by this time next year, she will be walking for sure." I've since learned that putting timelines on Hannah's development is a really bad idea. She will get there on her own time and in her own terms. Even though she isn't walking independently, she is starting to be able to get around by herself with her walker and this is a huge and amazing improvement from the past. It makes being outside so much more enjoyable for all of us.

She's still trying to figure out how to work the swivel wheels: I'll have to post the video I took of her going around in circles. It was pretty funny; she was laughing hysterically and not at all frustrated and it actually made her that much more interested in her new walker even though she couldn't get quite where she wanted to go.

Between the new walker and the AFOs and her increasing desire for independence, I think Ms. Hannah is going to have a really great spring. And so will we all.

Friday, April 4, 2008

I've been tagged

Jacolyn at Liek Triplets tagged me recently so now I'm "IT."

Here are the rules:
  1. Link to your tagger and post these rules on your blog
  2. Share 7 facts about yourself on your blog, some random, some weird.
  3. Tag 7 people at the end of your post by leaving their names as well as links to their blogs.
  4. Let them know they are tagged by leaving a comment on their blog.
Some random things about me:

1. I think I'm one of the few people in the world who should probably watch more TV. Seriously. I have a really hard time unwinding at the end of the day. Especially since having the girls, there is always so much to do once they go to bed that I just keep on going nonstop until I go upstairs, read a little and fall asleep. A little downtime on the couch watching the boob would do me good I think.
2. As a direct result of my inability to unwind, I have night terrors. This means that sometimes when I go to bed with a lot on my mind, I will scream bloody murder not long after I fall asleep. I often don't remember or barely remember that it happened when I wake up the next morning, but my husband definitely does!
3. In my pre-kid days I was a pretty avid runner. I've run 3 marathons, including Boston. I miss it and hope I can get back on the horse again some day if my knees hold up.
4. I can raise one eyebrow at a time. Try it: it's not easy. When I was like 10 or 11, I read this book where a girl had magical powers and one of her trademark facial expressions was to raise one eyebrow. I decided to learn how to do it myself.
5. In general, I don't have a great sense of direction but I'm a master at figuring out the backroads to almost any destination. We live in a rural area with a lot of random dirt roads that all connect to one another and I love finding new ways to go places. But if you ask me to tell you how to get there, I can't help you.
6. One of my favorite things to do is spend time outside. Before we had the girls, B and I spent time every summer canoe camping, the more remote the location the better. We've explored a good portion of the Adirondack waterways and also some of the lakes and rivers in Maine. We're so excited to introduce this to the girls and I think I'll freak if they decide they are not "outdoorsey-types"!
7. I worked as a waitress in San Francisco for a few years and at one of the places where I worked, I served a beer to Joe DiMaggio. I had no idea who he was until someone told me, and I'm a New Yorker!

OK, here are the people I'm tagging. I don't frequent enough blogs to tag 7 of them so here are a few to start!

Melissa at Twincredible Twosome
Tracy at The Secret Ingredient
Jill at Castillo Family Blog

Equipment update

I wanted to share that we're all adjusting to Hannah's "new boots" as we call her AFOs. The first day after we got them and I tried to put them on her, she cried and said, "They hurt!" After making sure they were on correctly and distracting her with some crackers, she kept them on although she wasn't interested in bearing any weight. I called the orthotist who said as long as there were no red marks that wouldn't go away or she was refusing to put one of her feet on the floor it was probably okay and she was just adjusting to them. She said, "Imagine if you had never put on ski boots and then walked around in them for a few hours. Would you want to put them right back on again the next day?" Good point.

Each day since then has been better and better. But each time I put them on, Hannah says, "You only have to wear them for a little while until you can walk better." The girl knows how to tug on the ole heart strings. Isabelle in her typical Isabelle "please let me help you" way now brings the AFOs over to me when it's time to put them on Hannah and says, "Here you go, Hannah. They are to help you walk better." They are quite a pair, those two.

So we're making progress and I'm getting more used to the idea of them and the best part is that I can see a very noticeable difference in the way Hannah stands and walks when they're on. One of the most striking changes is how straight she stands, I think because she doesn't have to work so hard to keep herself stable on her feet while she's wearing the AFOs. They allow her to concentrate more on holding herself up and using her trunk muscles instead of focusing all of her energy on foot alignment. I don't know, I might be just making this up. Sometimes I act like I have a degree in PT:) But it does seem to make some sense...

And today we got the new walker. Hannah has been walking around in her old walker this week saying, "Mommy is getting you a new walker that has wheels so you can turn." She knows what she wants and better yet, she has the language skills to say it! The girls were the hit of the medical equipment supply store, especially since most of the customers at that time were older folks. Isabelle found a dog toy on a string to pull around (she named him Buster) and Hannah was more than happy to try out her new wheels even in a new place with an audience.

She did pretty well on her first attempts but it's going to take some getting used to, as everything does. On our loaner walker, the handles were in a completely different place than the new one, which has much better placement to encourage Hannah to stand up straighter. But she's gotten used to leaning forward and putting all of her weight on her arms so this will take much more work and I think it might be awhile before she can get around as easily as she did with her old one. This is a bummer even though it's for the best in the long run, because we've all really been psyched about her increased mobility. She'll also have to learn how to use the swivel wheels and the pull-d0wn seat which are great features.

But she'll get there!

Tuesday, April 1, 2008

Blindsided again

I have been anxiously awaiting the day when we got to pick up Hannah's new AFOs because it seems like the more she walks around, the more her left foot has been turning in and she has been walking on her toes so I know she really needs them. Finally they were ready and we went yesterday to get them. In my excitement I guess I glossed over the reality of what they are, as low-profile and kid-friendly as they look: they're braces for my daughter with CP.

Those moms out there with kids who have been wearing them for awhile are probably at a point now where the AFOs are like extensions of their children's legs and feet. Or maybe not: maybe they still feel strong pangs of sadness each time they put them on their child. Either way, this is all new to me and yet one more step in our journey into the world of special needs. Before AFOs and the walker, I could pretend to the outside world that Hannah was just like other kids, only not yet walking. Now there's no denying that she IS visibly different from most kids her age. Amazing and beautiful and funny and smart, and different.

Once again, grief and sadness blindsided me. It came on the heels of a weekend spent traveling to NY to celebrate my parents' 60th birthdays. And we all had a really amazing time. We couldn't have had a more supportive and positive trip. We saw our dearest family friends and it was so great to be with everyone and feel all of the love they feel for both of my girls, but it also is another "outing" of Hannah and her developmental challenges. During our travels, we took the walker with us everywhere so it got full exposure in rest stops, the hotel, parking lots, etc.

The visit to the orthotist to pick up the AFOs was at 3pm the day after we got home, and both girls were totally exhausted (as was I). The appointment took over two hours. The girls were super stars at entertaining themselves but they were definitely losing it by the end. When we finally got home, B was waiting for us with a yummy meal which we all devoured. After the girls were tucked in bed, I felt dazed and overwhelmed. And that's when I realized that while each step in this process allows Hannah more and more independence, it is also a reminder of her need for the help in the first place.

I know I'll bounce back and be positive again about the great strides Hannah is making. It will just take a little time.