Friday, May 30, 2008

This is what I learned this week

Sometimes things can go smoothly. I had two phone calls yesterday with people involved in Hannah's care in some way or another; both of them were smooth, easy and got me what I needed. One call resulted in something I wasn't seeking but was happy to receive (mileage reimbursement from the state for the out-of-state second opinion we're seeking: horrah!) The other call was answered on the first ring by a very pleasant, efficient woman who seemed like she enjoyed her job and was happy to help me. Amazing!

I have to think that these calls went so well partly because we live where we do. I would bet that if you're calling a NYC government agency you may not have such an easy time of it. Press 1 to get a directory, press 2 to leave a message, press 3 to wait on hold for an indefinite amount of time, press 4 to lose your mind.

Not that I haven't ever had these conversations here in the north country. I have. But my experience yesterday showed me that it doesn't always have to be that way. Which is such a great thing. Because leaping through hoops to get information I need is not on the top of my list of fun things to do. I'd much rather be out in the sun with the girls, digging in dirt and planting flowers and letting them overwater the poor things with their watering cans. Which is what we did.

Tuesday, May 27, 2008

Administrative insanity

I'm drowning in a pile of to-dos. I called someone right back today after hearing her message and she was surprised at my speedy reply. I told her that if I didn't call her back immediately, she would get put on the to-do list. And if she got put on my list she might never get called back.

It's true.

Medicaid has approved our request to hire a personal care assistant for Hannah for 10 hours a week. This is a great and wonderful thing. But as with all good things, they come to those who do lots and lots of paperwork first. (I use "paperwork" loosely to identify all things administrative in nature: phone calls, forms to fill out, reports, etc.) So we have to identify, interview, hire and supervise someone suitable to come into our home and work with our precious love. Of course I am setting the bar at a realistic level. Yeah right. Desperately seeking a brilliant, passionate, energetic med student with a background in PT and OT and an interest in becoming a cerebral palsy specialist.

In addition to pursuing Medicaid, we're trying to get Hannah on the wish list for an Ambucs tryke. This too requires paperwork.

We also have a second opinion on June 4th scheduled at a children's hospital near us to meet with a posse of specialists: an orthopedist, pediatric neurosurgeon and physiatrist (all women I might add-very cool) to figure out next steps with botax and selective dorsal rhizotomy. But this too requires, you guessed it: paperwork. Tracking down the reports from Hannah's last physiatrist visit and her hip x-rays. Filling out questionnaires that they want us to complete before the visit.

And then there is hippotherapy. The OT who's conducting it wants to see the most recent evals from Hannah's regular OT and PT. In this case I'm not actually completing the paperwork, just shepherding it safely from one office to another.

I had dinner with one of my closest friends the other night and neither of us could independently retrieve the actor Phillip Seymour Hoffman's name from our shriveled brains. She said it's because we know so many important and impressive things that there wasn't room for such trivial information. I wish I could believe her. In my case I just think it's the result of my administrative meltdown.

Saturday, May 24, 2008

Special adventure day

We decided that on Saturdays when Hannah has hippotherapy, B and I would take turns bringing her and the other parent would have a special date with Isabelle. I debated far too long about how to frame this for the girls. We've always talked about taking them out individually for one-on-one time but I anticipated doing this when they were a little bit older and they would understand and appreciate the concept of having time apart from one another and with just one parent at a time.

We have this calendar that my mom got the girls and it has the days of the week, the dates, and little tags for things like birthdays or holidays or the catch-all "special day." The girls and I put the calendar up on Thursday and stuck the special day tag on Saturday's spot. I told them this was going to be their special adventure day, and each of them would get a chance to do something special with either Mommy or Daddy. I repeated it to them a couple of times and they started to get pretty excited about it.

Today when I dropped off B and Isabelle for their date (they went to an aquarium/science center) they both seemed a little confused, but when Hannah and I met up with them again for lunch, everyone seemed happy. Neither girl was that interested in or aware of what the other one did (ah, to be a egocentric two year old!) which was a huge relief to me. And not only did the girls have fun, but B and I each had a rare opportunity to spend some quality time bonding with one of the girls and getting a brief glimpse into the world of singleton parenting (better not to spend too much time there or we'd come back to twinlandia seriously depressed...)

I already shared some pics of Hannah's special adventure day, but here's one from Isabelle's.

Giddy-Up


Hannah had her first hippotherapy session today with Tara (pronounced Tah-rah) the horse, a stately old mare of 30 years. It was great! I'm so excited that we're doing this because I think it's going to be such a great way to get Hannah to stretch, strengthen and build muscle coordination through a fun and different approach. It's been a long time since I've been up close to a horse and I forgot how cool they are. They're so strong and big and in Tara's case, serene. Hannah looked so teeny up there on her. I think it will take a little while for her to get comfortable but already on the ride home, she was talking nonstop about the horse ("she sneezed!") and the OT ("I like Ms. S, Mommy").

video

Wednesday, May 21, 2008

THANK YOU!


Thank you to everyone who contributed to our fundraising efforts for the March of Dimes walk. We far exceeded our goal of raising $1,000 and instead, brought in over $1,800 for this important cause!!!

As it is every year, this year's walk was an important way for us to thank the March of Dimes for the research and funding they provide to help further medical advances in the care of premature and critically ill babies. It was also a way for us to honor our experience with giving birth to premature twins as this is a large part of our family history. And most importantly, it's an opportunity for us to celebrate our girls and all of the other amazing survivors that attend the walk: they are all miracles.

Thank you again.


Sunday, May 11, 2008

Accessible playspaces




It's only recently that I've become more tuned into accessibility now that we're taking Hannah's walker out and about with us. And it is incredible what a difference it can make when we visit a place that has been deliberately set up so that people of all abilities can take full advantage.


We've been at my parents' house for a week now and we've had the chance to explore two such places: the handicapped accessible playground near their home and the amazing Please Touch Museum in Philadelphia.


Wide open spaces, ramps, surfaces that are easy to push walkers or wheelchairs on...all of these are things that I may not have paid attention to and now welcome with such appreciation. I'm not sure Hannah is old enough to notice these considerations but from my perspective, I see her able to explore and interact with other kids in a way that she can't when she has to be carried around. She can be more independent, curious and engaged with the things going on around her. And it changes my experience as well. It's physically less demanding on me and emotionally less frustrating. After tasting the "good life," I'm on a mission now to seek out these kinds of places around our own home.


Tuesday, May 6, 2008

Out of town...

Sorry I haven't posted in awhile. We've been down at my parents' house since Sunday and will be here for two weeks (B headed back today to work and will come back down again to pick us up on the 17th). I'll have to post soon with some pictures we took at the March of Dimes walk-which was unfortunately pretty rainy and cold-and also from the playground we went to today which is handicapped accessible and very cool.

Overall, all is well. The girls love all the attention they're getting from Grammie and Papa and super busy exploring all kinds of new and fun toys. Tomorrow we're going to take them to the beach. Even if it's a bit chilly, I just want them to have a chance to see the ocean and play in the sand for awhile. They have only been once before when they were 6 months old, so this will be a whole new experience for them. On Thursday my sister will be coming for a few days, and so will my sister-in-law with my nephew, L. He's a year younger than the girls so I'm sure they'll all have fun playing together.

The big news is that we're starting potty training. I figured it would be a lot easier to do with the extra help of my parents and the fact that they live in a warmer climate so we could have the girls outside with little to no clothes on. So far it's going really well: on the first day both girls pooped and/or peed in the potty at least once. Isabelle really seems to be catching on pretty quickly to the idea although I think getting her to stop playing in time to make it to the potty to pee might be our biggest hurdle. Hannah is a little more tentative and fearful about the whole thing. After her first poop she got kind of freaked out and isn't super eager to try when you ask her if she wants to go.

I'm being pretty low-key about it all. I don't want to stress them or myself out about it and know that eventually they'll both be potty trained. Isabelle seems really ready and excited to do it so I think it was time to initiate it for her and if Hannah gets there in the process, great. But if not it's not really a big deal. I do have to say that it's hard to get super motivated about it because in some ways diapers are just so much easier to deal with. The constant "do you have to go to the bathroom?" reminds me of the early days when we were feeding them around the clock. It's a lot more maintenance than I've had to do in awhile. But it will be nice to be done with diapers some time soon, too.

It's definitely really crazy to see them hanging out in their big girl underwear. How did this happen so fast?! Another good thing about being down at my parents' house is that the extra help frees me up to be able to just hang out and play with them more which I don't do as much as I would like to when we're at home. I want to enjoy the teeny underwear-wearing muchkins as much as I can!