Saturday, February 23, 2008

Some fun pics

I think this blog needs some more pictures of the girls! Scrolling through, it seems so text heavy and seeing the little wonders in living color is so much more fun than Mommy going blah blah blah all the time. So here you go:

Isabelle and Hannah intently playing with the barnyard toys last weekend at the environmental ed. center we took them to.

Isabelle assuming the best position for petting Roxy the rabbit (who was a little camera shy:)

Hannah in the playhouse B made for the girls which they lovingly decorated.

New Boots

On Thursday the girls and I went to the orthotist to get Hannah casted for her braces, which I billed as "new boots that will help Hannah to walk." I was a little stressed about this appointment because it was at 3pm in a town about 45 minutes from here, which with naps and lunch and getting home in time to make dinner was a logistical challenge. I thought I had the day planned out well: put them down for an early nap, lunch when they got up, and out of the house by 2.

Best laid plans, right?

Neither of them napped.

Joy, joy.

Amazingly though, they did pretty well with the car ride and the appointment, which took over an hour. Thank God the orthotist had a lot of toys for them to check out. And Hannah was pretty occupied by walking with her walker down the long hallways and in the exam room. Isabelle got a little maniacal toward the end of the visit; when she gets overtired, she gets really ramped up and talks a million miles a minute, jumping from one topic to another and asking a ton of questions. I'm used to it so it doesn't really faze me but the poor orthotist, this woman Deb, seemed to be losing her patience.

As far as exams go, this one went really well for Hannah. Deb took a lot of time with her examination and I felt she was very thorough and knowledgeable. We talked for awhile about whether or not Hannah should get an AFO or a more low-profile SMO, the main difference being that the AFO comes up to the back of the knee and provides more support/prevents her from hyperextending at the knee. Ultimately we decided she would get an AFO with an SMO footbed, which will make it a little less bulky and cumbersome especially since Hannah's feet are so, so tiny, but will give her that extra support which I think she needs.

Deb also spoke with confidence about the fact that someday, Hannah will walk without any "gizmos" as she called her walker. I had asked her how long kids with CP typically need braces and she said someone with Hannah's degree of CP would probably still be wearing something even in middle school, but it would most likely be something just in the footbed like an SMO. Then she said, "We want to make sure we continue to support her when she progresses to walking without any gizmos." I said, "Do you think that will happen? Because that's what we've been hoping for, but we weren't sure." And she said, "Oh, I'm quite sure. Look how well she's walking with her walker, and she's only two."

This made my day, my week, my month. A part of me is afraid to get too hopeful and focused on the future. We all have a lot of work to do before we get to independent walking, and as I'm starting to realize, the challenges will not be over when that happens. But with Hannah and Isabelle racing around the house laughing hysterically, both so excited that they are up and moving about together, it's so great to dream about the future...

Spilled Milk

Not as in "don't cry over," but literally, as in spilled milk all over the floor, counters, cabinets, rug, couch.

Some days I feel like I spend a good portion of my time wiping up milk. The girls drink from these straw cups with flip tops, and when they flip open the top, whatever milk has gathered in the straw shoots out and lands everywhere, including their hair and my glasses.

In the grand scheme of things to worry and get stressed about, this is really minute. But some days, when I'm sitting across from them with milk on my glasses and a puddle on the floor next to them and it's the end of a long, two-year-old twin day, I think I might just lose it.

Sunday, February 17, 2008

"I'm doing it!"

These were Hannah's words to me tonight as she raced across the kitchen floor with her walker. And she's right: she's finally, truly using her walker. It's amazing!

Thanks has to go out to a wonderful mom on the CPMoms support group who suggested, when I expressed some of my frustration that Hannah was not that into walking with the walker, that I take her to someplace outside of the house, like the mall, and let her give it a go.

This was a great suggestion because at home, things are not novel and Hannah knows all the tricks to getting out of doing things that might be a little bit hard or scary. But at the mall, where there were wide open aisles and lots of novel and exciting things to check out, she quickly forgot that she was walking with her walker and marched all around with pride and excitement.

It didn't happen right away. When we first got there, she was definitely unsure and just sort of stood there looking at me. With a lot of coaxing, she took some steps but then petered out pretty quickly. We took a break, got a snack, and came back to this circular open area right near a toy store with a great window display and this time, she did much better and walked more than she ever has walked, under her own steam. After we got home, she promptly took a two hour nap!

I also want to thank a good friend of mine and her two year old son, someone we have lots of playdates with. They met us at the mall and having that support and another friendly face made the outing much easier on me emotionally and physically. Thanks, LPM!

With this success under my belt, I decided we should take the walker with us again today when we went to a kiddie activity at an environmental education center near us. At first, Hannah wanted only to be held as there were a lot of kids there, and noise and activity all around. Even Isabelle was sticking pretty close to us until she warmed up to the place. But they had chickens and a bunny for the kids to pet and that sealed the deal for both girls: they got very comfortable there and by the time we left, Hannah was literally trying to run with her walker down the hall so she could go wash her hands (she actually turned to me and said, "I'm running!" with a HUGE smile on her face).

Now, whenever she gets up from her high chair, or wants to go into a different room, I pull the walker over and plunk her down into it and off she goes, without even a moment's hesitation. She is on FIRE and we're so THRILLED that she's finally tasting the freedom of independent mobility.

Now I'm all worked up about getting her new walker ordered, pronto, because the loaner we have is lacking a few key options that I think Hannah's really ready for now, like swivel wheels so she can turn and a seat that flips down if she needs to stop and take a rest. I'm also very eager to get her casted for her orthotics because she is doing a lot of toe walking with her left foot and both feet are turning in and I want to be sure that as she learns to walk more, she is doing it with the correct leg/foot positioning.

It's so great to finally have some progress in this area, and I'm already daydreaming about how great it will be when spring comes and we can be outside together and Hannah can do some serious independent exploration. It's only onward and upward from here!

Friday, February 15, 2008

More fresh air

Last weekend we met up with some good friends and their two kids and all went for a great snowshoe hike near our house. It was relatively warm (for February) and sunny so it was a great day to be out. The snow was deep and soft and it was definitely a workout but it felt great. The girls took super long naps after, also. Nothing like fresh air to bring on happy smiles and good naps!Isabelle got to try out my snowshoes and loved it. I'm thinking we need to get her on some skiis soon!

Sunday, February 10, 2008


I spend so much time looking forward, trying to see into Hannah's future, that it's easy to forget how far she has come already. These pictures really bring it home. The first shot is from Fall 2006, just after the girls turned 1. That's Hannah on the right; she couldn't sit unassisted and spent a lot of time playing on her back and rolling around.The second shot is from this past Fall, after their 2nd birthday. Now she can sit, stand with arm support, commando crawl and sometimes even pull up to a stand.

I just have to keep telling myself, look how much has happened in just a year...imagine what next Fall's picture will be like!

Wednesday, February 6, 2008

The medical pedestal

We met with the physiatrist yesterday and I didn't cry until the appointment was over, which I was grateful for. Not that I think there is anything wrong with crying over anything, especially not discussions about your child's limitations. But I was glad I didn't cry during this appointment because the physiatrist turned out to be a pretty arrogant, dismissive guy and I didn't want to be vulnerable in front of him.

It was really unfortunate, because I went into the appointment with a lot of hopes and expectations that we would get new and valuable information, access more resources, and come up with a clear game plan. Instead I left feeling totally overwhelmed and lost, like I'd just been run over by a truck. I acknowledge that I would probably feel this way to some degree even if we met with the biggest warm-fuzzy in town. But I also think (and B and I are in wholehearted agreement on this) that this doc could use a big lesson in humility. Parents are already traumatized when they have to go to a rehab clinic for their special needs kid. It is even more traumatic when the person to whom they are looking for advice, suggestions, and hope is looking down on them from a holier-than-thou pedestal, cavalierly throwing out diagnoses and prognoses and procedures.

B and I are tossing around the idea of telling this doc, next time we meet with him, that while we respect and appreciate his expertise, his approach to us was not very helpful. We will be meeting with him and others in his group several times a year and I just don't think I can tolerate another visit like the one we had yesterday. Obviously he isn't going to have a major personality overhaul (too bad, huh?) but maybe he'll be a teeny tiny bit more down-to-earth if we're direct with him about how we feel. We'll see.

Anyway...obnoxious personality traits aside, more about the visit...

So, we did get a diagnosis of cerebral palsy, spastic diplegia type. It didn't surprise me and I was relieved to hear that he thought she was diplegic and not quadriplegic, because that means she is less involved and more likely to have a better chance at independent mobility. But even though it didn't surprise me, it still crushed me to hear it finally formalized.

Next week, we're taking Hannah to be casted for orthotics; not the typical AFOs but a more low-profile SMO which I guess doesn't come up that high on her leg, since she is still so small and can probably start out with a more minimal approach.

We're going to order her a new walker because the one we have doesn't have swivel wheels, so she can only go in a straight line. Right now this isn't a big deal but someday, hopefully soon, it will be.

We have to get Hannah's hips x-rayed, which she hasn't had done since right after she left the NICU. I can't remember why exactly he said we need to do this, but something about the unequal length of her legs and needing to keep an eye on it and making sure her hip sockets aren't totally out of whack.

Botox injections to loosen spasticity in Hannah's muscles may be in her future as well, but he didn't feel we needed to go that route just yet, as she has good range of motion and is able to work through her high tone enough to make progress toward walking. But as she grows and her bones lengthen, her muscles may not lengthen along with them and this is when botox would probably be most useful.

We're going to apply for a version of Medicaid that isn't income based, but based instead on disability. This will hopefully mean that we get more financial assistance with equipment, procedures and appointments than we're eligible for right now.

We're going to apply for a handicapped parking placard. This would have seemed almost ridiculous to me prior to this appointment, to which we lugged both girls, Hannah's walker and her push wagon. I think right now, for most situations I won't need it. But someday we might bring Hannah's walker somewhere and also have the stroller. Or have other equipment. Who knows. I would probably not have thought of this myself, at least for awhile, but at the clinic yesterday they had a form where you could ask for help with different things, and getting a handicapped placard was one.

We're also, with the help of Hannah's OT, going to look into adaptive swimming, yoga and hippotherapy, all of which can really benefit kids with muscle tone, balance, and postural problems. I've been thinking about finding a new activity to do with the girls so I'm excited to learn more about what's accessible in our community.

All in all, it's a lot to digest. I'm reminded again that we are really living in an alternate reality from most parents, which is sometimes easy to forget when we're just going about our day-to-day routine.

Thank God the girls are so stinking cute (if I do say so myself!) because they make it all bearable. Today I was holding Hannah's hands while she walked around the house and she kept looking up at me and saying, "I walking. I walking." Yes love, you are.

Friday, February 1, 2008

Potty Training 101

So today, both girls peed in their little potty! This is amazing on many levels, first and foremost because I haven't done much at all in the way of potty training. I just haven't felt like dealing with it. I know that with some effort they could probably both be trained; they are interested and have all the right vocabulary and totally know what's going on in their diapers. But it's the dead of winter, I have other things on my mind, and I just haven't really felt like it. The girls and I will be going down to my parents' house in early May, for two weeks, and I had sort of decided that is when I'd train them, because I'd have extra help and it would be warm out so they could run around with no pants on.

For whatever reason though, I decided yesterday to start putting them on the potty a few times a day and asking them if they had to go. I figured, why not?

The first time, Isabelle was waaay into it and could have sat on the bowl forever. She said to B, "Daddy, go away," like she needed her privacy. It was pretty funny. But nothing happened. And Hannah was very wary and almost afraid of it.

Then today, Isabelle sat down and she actually peed a little bit. I got so excited, and so did she. Then Hannah tried, but nothing happened. Isabelle was right there to cheer her on, though: she squatted down in front of Hannah, rubbed her leg and said, "Are you going pee pee, Hannah? I'll help you." She is such a piece of work. Then she grabbed some toilet paper and tried to wipe for Hannah. I put a stop to that pretty quickly!

Anyway, later in the day I let them try going again, and Hannah was so excited to try and as soon as I put her down, she peed a good bit. Her expression was priceless: at first, it was like she was totally shocked and surprised! But then she started giggling like crazy and was really proud of herself.

I'm sure it won't be this easy, but with such quick victory under our belts, I think maybe we'll keep trying this out and see what happens. My little girls are growing up!

From Mommy to Mom?

Today Isabelle decided she would start calling B "Dad" instead of "Daddy" and me "Mom" instead of "Mommy." It was the end of the day, she was kind of wound up, and she was charging around the house saying, "Hey, Dad. Daaaad. Dad." And then a little bit later, "Ma, Ma, Mooommmm."

I felt like I was being visited by her future teenage self. It was a trip. But I have to admit, I'm not ready to be a Mom. I still want to be a Mommy!