Odds and Ends

Hannah's evaluation with the physiatrist is set for February 5th. I'm both excited and anxious, as I always am when we take her to appointments like these. I'm excited to see what he has to say about her potential for independent walking and suggestions for different equipment that might be better adapted to her size and her needs (i.e., the walker we currently have is one that was borrowed from a kid who outgrew it and it is currently lacking the proper feet so that it doesn't roll backwards if Hannah's feet slip out from under her). I'm hopeful that he will have tips, tricks and suggestions that will help her progress toward that independence more quickly.

But I'm also anxious. First off, I would rather be anywhere than be taking my kid to a rehab clinic because I would rather that she not need to be "rehabed" from anything. I also know that while I have come to some acceptance with the fact of her delays, it's still a shock when someone in a white coat reminds me of it. And what if the hopes that I have for this visit don't come to pass? What if there is not much more we can offer Hannah except the patience to let her get where she's going on her own time frame? Lastly, horror of all horrors, what if I cry? I have yet to make it through any kind of doctor's appointment, evaluation, or meeting with Hannah's service providers without welling up at some point during the visit, but I hate when it happens and I always dread the moment when I know it's coming and there's nothing I can do to stop it.

T-minus 22 days until the appointment. Deep breaths, deep breaths...

Secret Lives of Twins, Take II

The twin phenom just keeps getting more and more fun to watch as the girls get older, more expressive, and more social. Of course it's not always peace and love. Often it's "Hannah don't look at me!" or "Isabelle don't sing that song!" or the ever-constant "MY TURN!" But a lot of the time it's also really cute, and funny, and heartbreakingly touching.

This pic was taken tonight at dinner. For those of you who are shy about private matters such as bathroom habits, you might want to skim this story. Anyway, for whatever reason, when Isabelle is pooping she sometimes likes to hold our hands. She tends toward the constipated end of the spectrum so I think she likes the comfort while she struggles! So tonight at dinner, Isabelle noticed that Hannah was doing her business (which happens most often when she's in the high chair eating). So she turns to her and says, "Are you pooping over there, Hannah? I'll hold your hand."

The theme of Isabelle wanting to take care of and help Hannah comes up a lot between the two of them. I don't know if it's just who she is or if it's at all related to her sense that Hannah might need a little extra help in some areas of her life. Or most likely, she is just mirroring what she sees B and I doing so often. Whatever it is, it's a beautiful thing and when it happens, I often have to turn away so they don't see me crying. Like the other day, when I was in the kitchen and Hannah and Isabelle were in the playroom and Hannah fell from a sitting position onto her back. Hannah started saying, "Get up, get up," and I told her I'd be right there. Isabelle promptly walked over and said, "I'll help you, Hannah. Sit up straight, Hannah. Here you go." And she grabbed hold of her arm and tried to help Hannah right herself.

As hard as it is sometimes to raise twins, especially when one twin has special needs, these are the times when I feel so grateful that Hannah has Isabelle in her life. And that Isabelle has Hannah.

"The System"

Today we sat with Hannah's PT, OT, early intervention coordinator and the coordinator of our school district's education-based special needs services and discussed the various options once she "graduates" from the birth-3 program. We spent a good chunk of time last night writing out the questions we had and I felt confident that we would walk away with a clear understanding of the next steps we need to take and the resources available to help us along the way. B and I are both pretty intellectually curious folks and we are also very comfortable advocating for ourselves and our girls.

For the most part, I got a better handle on the various terms ascribed to the different services and programs (ISFP, IEP, EEE, CSHN, xyzblahblahblah) and I think I know what happens next:

• In early summer, we will meet with the education coordinator again, get Hannah officially enrolled in the early ed program, and decide whether or not we want to send her to our county's special ed preschool;
  
• We'll also get Hannah an appointment to be seen by the physiatrist at the rehab clinic so that she is properly evaluated for and fitted with whatever equipment she needs (TrippTrapp chair, walker, orthodics if necessary);
  
• We'll find out what, if any, insurance coverage we will have for in-home PT/OT services.

But there are still facets of this system that are confusing to me. Which got me thinking: if this is still confusing to me, a fairly well-educated person with lots of resources available to me (financial and otherwise), what about someone less fortunate? Someone who has more pressing matters to deal with (putting food on the table, for example) that leave little time or mental energy to prepare for a two hour meeting with various service providers. What happens to those families and those kids? Do they fall through the cracks or does the system provide safety nets for just this sort of reason? And isn't the system supposed to be for exactly these families to begin with?

January thaw

It was in the 60s here today which for this neck of the woods at this time of the year is amazing. The birds were out, the snow is almost totally melted, and our little village was alive with people out and about and smiling. The warm weather couldn't have come at a better time, as we are just getting back out of the house again since right before New Year's, when we were all, one by one, felled by a nasty stomach bug that just wouldn't go away.

I'm reminded once again that the trauma of the girls' birth and Hannah's motor delays is still so close to the surface. It's especially difficult when Hannah gets sick because it really takes so much out of her. She's barely 19lbs soaking wet (and she's 27 months old) so she has very little reserves. When she doesn't eat, vomits and has diarrhea for days on end, I start to think about how hard we worked for every one of those 18 lbs, 12 ounces and I just feel defeated. And she is defeated, too. On a good day, Hannah gets totally pooped out after minimal physical activity and needs some kind of high calorie food to get her going again. When she's sick, she can barely keep her head up. The other day she literally did not move from the floor where I laid her down while I put a few dishes away. It's such a stark contrast to Isabelle, who like most kids, I assume, has to be pretty bad off to be so inactive. Sure, she slows down and is less feisty than she usually is, but she still has an interest in and ability to move around and play.

This latest round of sickness had me especially panicked, I think because Hannah had been doing so great and making some really nice progress, and this felt like a setback. It also happened at the height of the post-holiday winter blahs, a hard enough time to feel sunny and light.

The good news is, she's eating well again and getting some of her energy back. And today was an absolutely beautiful, spring-like day.

Happy holidays!

We just got back from being down at my parents' for a week, hence the hiatus in my posting. We had a great visit and the girls were amazingly good travelers (my parents live 8 hours away so it's a hike). We've had some pretty rough road trips in the past so this was a very welcome change.

I have a few cute holiday photos to share and plan to write a longer post in a few days once we get settled back into our routine. There are some shots of the note and the girls left for Santa and the one he wrote back; a picture of Hannah with Grammie, sitting up so straight and admiring a new toy, Isabelle in her braids complements of Grammie (I have to learn how to do that!), and both girls using their new art supplies.

Here's to a peaceful new year.

Daddy of the Year

The weekend before we left for my parents' house, we spent much of our time at home getting ready for our travels. I was having a hard time with the girls because we had been cooped up due to all the snow and their various illnesses, so on this one particular day I pretty much handed them over to B and let him entertain them while I got stuff organized for our upcoming trip. As you can see from the pictures below, he did an amazing job. They helped him cook waffles for breakfast and decorate Christmas cookies, then he brought a huge packing box down from the attic and they painted it in anticipation of making it into a playhouse.

I don't know how I would survive this journey we're on without him.

Transitions

This clip gives you a sense of the crux of Hannah's difficulties with movement, as well as an idea of what she is working so hard on right now: transitions.



Although she can push her wagon around really well, it's much harder for Hannah to get all of her muscle groups to work together to get her knees up under her while her arms pull her up to a kneeling position, and then eventually pull up to stand. Without being able to do this, her ability to be independently mobile is still limited. And this transition is a big one in the precursor to cruising and walking.

The great news is that she wants to do it, and is trying so hard, and trying all the time. We've been putting her in this position for a long time now, helping her get her arms up and her legs under her, and then showing her how to pull up. In the past week or so, she has been getting herself into this position on her own, which is huge. And today...

(drumroll, please)...

She got from a kneeling position to standing ALL BY HERSELF!!!

I think it's telling that she did this while I wasn't in the room. My biggest challenge is letting her fuss and complain a bit and not always rushing in to help her. It's the hardest thing I have to do. But I do it when I think she's feeling good and well fed and distracted enough by her toys and her sister that she'll tolerate the frustration long enough to work hard to figure it out alone. This is exactly what happened today.

I was in the kitchen, the girls were in the playroom, and Hannah started crabbing. I told her I'd be there in a minute, and I thought to myself: "how amazing would it be if I walked in there and she was standing up?" A few minutes later, she was still crabbing so I thought she'd gotten herself into a position she couldn't get out of, and I went in to rescue her.

I walked in, and there she was, standing up. I couldn't believe it. And she was crabbing not because she couldn't get where she wanted to, but because she and Isabelle were fighting over a toy. Both of them standing up, playing together, fighting over a toy. Who knew that could make me cry?