Wednesday, May 19, 2010

Therapy Schmerapy

Sam has OT one time per week, and PT two times per week, and it looks like we are about to add ST (speech therapy) once a week too (more on that in a second). Yet, I read other blogs, and exchange messages with parents of other kiddos with various delays, and I always wonder, "are we doing enough?" Maybe that's the million dollar question EVERY parent asks, but its tough. Our doctors (particularly Super Doctor) have always been adamant that we keep doing the therapies, but only to the extent they don't overwhelm us OR Sammie B. We aren't really overwhelmed by them now, they've become our new normal. It helps (me, particularly) that our nanny takes Sam to some of the appointments (I go to one PT per week, Brian goes to the other, and our nanny goes to all the sessions so that she sees how to best work with Sammie B during the days). But, after our last appointment with Super Doctor (which I never posted about, we just talked a lot about her pursuit dysfunction -- the neuro-eye issue, how this + low-tone affects her ability to move, etc. -- just a TWO-hour talking appointment where Super Doctor answered ALL our our questions), we've sort of recommitted ourselves to THERAPY. Super Doctor thinks her trunk tone has come very very far, but her arms and legs are still very low-tone and weak. I think we'd (as in me and B) gotten a little lazy. We haven't been working and just want to play (and relax!). So, we are trying to find ways to do both. We'd noticed that we'd been working SO much on standing that now Sammie B's arms seem weaker, so we are doing new things to work those. We also felt like our PT had fallen into a rutt, and each session was same-old; same-old, so we talked to her about shaking things up as well. We've ALL sort of fallen prey to the sweet Sammie B's smiles and whines, and not made her work through the whining. It's hard to work her so hard, but we all know its in her best interest, so we are trying trying. Now, we won't make her "work" if she's sobbing, but whining, yes. That's a tough thing to do as a parent.

B and I are also starting to look for some alternative-type therapies. I've read AMAZING things about aquatic therapy, and while we haven't found any aquatic therapists, we have found a swim instructor that's worked with babies with various muscular issues. Sam LOVES the water, and we think that would be a great way for her to do something that is both "work" + fun.

I think we all feel rejuvenated and excited about our new "commitment" and our new ideas. We hope Sammie B enjoys them all!

We also had our 18-month speech assessment with the RC yesterday. Neither Sam's pediatrician nor Super Doctor has been concerned about her speech (she babbles a ton, but few words) but they said speech therapy isn't too taxing on kids, and is generally fun, so if we get it, take it. . . I of course HATE HATE the evaluations, so I was nervous, but since both doctors had been so laid back about it, I figured I'd take it all with a grain of salt, and try to look at it as just getting an additional resource and not someone "evaluating" my child. Well, the results were pretty much exactly what we expected. Her expressive communication is slightly delayed, she communicates a ton non-verbally, and definitely has ways of showing us what she wants/needs, but most babes her age have more words. This is likely just due to her low-tone and coordination issues, and we'll work on them. And, her receptive communication is actually a little ahead of her age. I've always told people I KNOW she understands EVERYTHING, and our doctors have agreed, but sometimes, I can't kick the feeling that people underestimate her because of her physical limitations, and I feel all defensive and mama-bearish when that happens (I imagine this happens to many people with physical limitations--people assume things about their mental capacity as well). . . Anyway, that's that. We think we'll get speech therapy once a week, to add to our already busy busy week. And we'll throw some swimming therapy in a few times over the summer (we want them to just come out and show us how to work with her, this won't be a weekly thing).

So here's to new commitment, new efforts, and optimism! And here's to our hard-working little Bean!

(Almost) Wordless Wednesday

Why does the pink bear keep getting smaller? But our smiles keep getting bigger!

(4 months)

(1 year)

(19 Months)

Monday, May 17, 2010

Procrastinate much?

P.S. Mama isn't the only one working hard, so is Samme B - both in OT and at home.

And P.P.S. You may have noticed this toy that Sammie B is standing and playing with in many pictures. For mamas of delayed little Beans that follow my blog, I have to say this is the toy we've gotten an insane amount of mileage out of . . . it is a GREAT distraction to "work." I still remember when Sammie B hit a world record of TEN minutes of tripod sitting while watching this toy! And now, we use it for standing! We really are moving right along :o)

That sitting face (which pretty much says "why the 'f' are you making me do this?") is priceless.

Sammie B, you work so hard for all that you do, and you make us so so proud. We love you with every fiber of our beings.

Happy Birthday To Me!

Today was my birthday! It was a pretty uneventful day. I had a brief that I HAD to finish yesterday, so I went into the office for about 7 hours, and promised myself I'd finish it last night after dinner (at a friend's house). But then I came home and laid down with Sammie B to get her to sleep (promising myself I'd just "nap" for an hour) and ended up sleeping all night. . . I woke up often (kept re-setting my cell phone telling myself "one more hour and I'll really get up and write") but then kept saying "It's almost my birthday! I should sleep!" So, today I had to scramble on the brief, and still am . . . it's a doozy. Brian asked what I wanted to do tonight, and I said, "NOTHING." So, we ordered pizza, and then I said, "I want a birthday nap!" I ended up sleeping all evening (delicious) but am now finishing the brief. I will likely be up all night, but the flourless chocolate cake + lots of diet coke are making it better . . . and besides, my birthday is almost over (less than an hour left)!

I did have a VERY special visitor for lunch at the office today, which was fabulous. If only she could write summary judgment briefs . . .

Sunday, May 16, 2010

Trial Mode

If ever there was a time "work/life balance" goes out the door, its when in, or preparing, for TRIAL. In less than two weeks, I'll be flying to the Lone Star State for a two-three week stay for TRIAL. I've never felt so conflicted . . . on the one hand, the thought of leaving my little family for three weeks makes me want to vomit (and pray for settlement) but on the other hand, I feel like I SHOULD be excited about this opportunity. I am, and chose to be, a litigator after all. Trial . . . is what litigators live for? Right?! And, at BigLaw, trials are rare, and this would be my second in my short career - great opportunity, right?! But still, I'm left with the fact that I literally have more work to do than could possibly be accomplished in the time I have, I am in the office on a Sunday, while my family is home cuddling and playing, and I am overwhelmed to say the least. It's times like these I question whether I can, or WANT, to do this all long term, and I hate how it all makes me feel. I WANT to be a valuable part of my trial team. I WANT to be a star associate, but I just don't know if I have it in me anymore. Or if its worth the time away from my family.

When I was a first-year lawyer, I spent a month away at trial, and that was hard . . . very hard. Hard to be away from B. That was pre-Bean (well, actually, I was prego, but we didn't know yet). B obviously understood where I was, and why I had to be away. It makes me sad that Sammie B is too young to understand that, and I worry that she'll just wonder where the F mommy went. And that's hard. I also billed 330 hours that month, and felt like I was going to die by the end of it. Yes, it was exciting, yes it was a great career milestone, but dammit, it was hard. Can I do this long-term? Do I want to? I used to, but now, I don't know.

After that trial, B and I talked about how we'd handle TRIAL with a babe. I knew I wouldn't want to go away from my kiddo for so long, but I assumed I'd just take the baby with me, and bring my mom, or B's mom, or some combo of both, along to help out. I didn't know that I'd have a Bean that would need therapy 3x per week. I can't take her away from that (or her Daddy!) for three weeks, so that's no longer an option. Proof positive that no matter how much we "plan" or think we know how we'll handle situations, life just keeps coming at us, forcing us to adapt and re-write our plans over and over. My mom will come to CA for part of the trial period, which is nice. The issue isn't that I worry about Sam. I know SHE will be in GREAT hands (daddy's, my mom's and our nanny's). . . I JUST HATE the fact that those hands will NOT be mine.

I'm operating on the hope that I bill like a maniac all of June b/c of this trial, and then can cruise through July and take some time off to spend EXTRA QT with the little fam, and that that time will somehow make up for the time lost to trial and trial prep. I know I'm lucky to have the opportunity to be at BigLaw. To be a well-paid associate handling challenging cases and learning from some of the best. I know that. I'm learning a TON. But that doesn't make the time away from my family any easier to stomach.

So, now, back to work. No doubt Sammie B and Daddy will do something wild and fun today . . .

(P.S. Don't report us to Child & Family Services; she didn't actually drive; he didn't even MOVE the car . . . we just let her sit there while someone else moved their car so he could pull in our garage; and yes, my husband has completely hi-jacked my women's Fendi sunglasses b/c he likes them better than any pair he's ever owned).

Wednesday, May 5, 2010

My Promises to Sammie B and to Me

Yesterday was a day. It started with a fairly crappy PT session. Sam usually does fabulously well in PT (and LOVES being on the treadmill) but even that made her cry yesterday. I knew she was tired--she's had a few late nights lately--in general we haven't been good about the 8:30 bedtime, including last night, even though therapy was at 8:30 am. And besides, I know KIDS have crabby days. TYPICAL kids have days that everything makes them cry. But for whatever reason, this one made me feel all sulky and sad. Maybe because I'd dressed her in her Team Sammie B shirt from the MOD walk, thinking it would have good PT vibes for sure (there I go trying to control the uncontrollable, again, right?). So, I came home, posted something on my facebook page, and on one of my mommy boards, and of course got tons of messages from my girlfriends reminding me how far we've come, how much promise there is in the future, etc. I'm eternally grateful for those friends that remind me to keep on keeping on. That see Samantha for the beautiful, loving, charming, funny, magical little girl she is, and not for her struggles. That see the PROMISE.

I also happened upon a blog written by a mom whose son has cerebral palsy. She wrote about how she got from where she was years ago when he was a baby and a toddler (a place she describes as filled with worry and darkness) to the place she is now (well-adjusted, and a place of peace). And so, I'm hijacking (though giving credit, see link above!) (I hope she doesn't mind) her list, adding some of my own, and making them into present-tense promises to myself, and to my sweet Bean:

• I will talk about my worries and my grief. I will reach out to friends and family when I need them. As I mentioned above, I have a fabulous group of women in my life, not all close by, but all just a phone call or email away, ready and willing to listen, and to remind me of the PROMISE that lies ahead even in the midst of uncertainty.
• When I have moments of fear about the uncertainty, I will find new ways to savor my sweet Bean (an easy task). We will walk outside and blow bubbles. We will lay together and giggle, or I'll snap a quick picture of her brilliant smile. I will not let the fears of the future overshadow the fact that I have an amazingly delicious little girl. I will not let the therapy appointments (good or bad) or the doctors appointments overshadow the pure love and joy felt every single day in our home.
• In the moments where I feel like, "why does MY child have to struggle?" I will remember that SHE doesn't feel sorry for herself. She is perfectly content. She doesn't know that movement is so much easier for other kids, she's content. Happy. Well-adjusted. Safe. Loved. Loved beyond belief.
•I will NEVER EVER underestimate my Sammie B, or lose sight of the PROMISE that lies within her and ahead of her, and I will surround myself with people that have the same outlook.
• We will be her best cheerleaders, and her best advocates. We will (and have been) put together the best team of experts we can find. We have (and will continue to) research doctors and therapists. If someone doesn't work out, we'll find a replacement. We'll fight the insurance company, the regional center, whoever we need to fight to make sure she gets the quality treatment she deserves. That she gets EVERY step up she can. (I will use this as a means to feel a little bit of control over the uncontrollable).
• I will try not to beat myself up. Between all the therapeutic exercises experts give us, I could easily spend 24/7 working with Sam, but I know I cannot. I will do my best, and I refused to feel guilty about not being able to do every single thing. Putting all that pressure on myself will only made me more stressed, will keep me from enjoying my time with my sweet Bean, and won't do her any good.
• I will quit paying attention to major milestones. [I deleted my subscription to Baby Center updates months ago.] I am only torturing myself by comparing what Sam should have been doing with the reality of her delays.
• We will continue to celebrate the little, every day progress. The progress that sometimes is so slight it could go unnoticed (but not by us!), or the progress that's going on that we can't see, but the progress that is undoubtedly there. The inchstones.
• When I need to, I will hunt down happiness. If I am bummed out, I'll talk to someone to help me remember the BIG things Sam is doing.

This other mom wrote that she "finally got to acceptance. It came excruciatingly slowly because it kept head-butting with hope—my hope that Max would completely prove the doctors in the NICU wrong. As time went on, and it was clear Max had challenges, I readjusted my hopes. I was no longer looking for the miracle; I just really and truly hoped that Max would keep on improving. And he has. As our saint of a neurologist has always said, "Don't look at books, don't look at medical records, don't look at charts. Look at your child, and what he's doing.""

So, Sammie B, I look at you.

May I be that strong. May I reach that place of peace. Somedays I think I'm there. Others, the worry and wonder take over, but Sammie B's smile heals me every single day, just as Max's smile healed his mother every single day.

This smile . . .