Thursday, April 29, 2010

Heavy Decisions - The Post That's Been Brewing for Weeks

(Clearly, the heavy decisions going on in our house lately have worn our sweet Sammie B out.)

As I mentioned briefly in my last post, we recently received a notice that Sammie B's regional center funding would be discontinued because we have private insurance. Now, I could go on and on about how I think the system is "broke" or why I think it is that way, but suffice it to say it is an unfortunate situation and one that makes me like my state a little bit less. I get it that the regional centers are supposed to be funding sources of last resort, and that families should use their private insurance first, but unfortunately, the regional centers have been providing funding to everyone and anyone who qualified for so long that most pediatric therapy providers have been able to survive (and thrive) on regional center funding alone, which has allowed them to avoid the cost and hassle of dealing with insurance billing. The result? NO pediatric OTs/PTs take insurance! We haven't ever really loved our OT (we chose her because she came highly recommended with great qualifications, but her personality was less than impressive and her level of enthusiasm sucked), so I wasn't that bummed about a change there but we do like our PT and feel like she's so vested in Sam's treatment. And, all change just scares me and launches me into the usual panic and worry.

So, we got a list of pediatric PTs and OTs from our insurance company and I called every single one of them within a 20 mile radius from our house and not a single one of them (1) sees kids Sam's age, (2) specializes in developmental delays (as opposed to just seeing people post-injury, like orthopedic clients) AND (3) has the appropriate equipment for working with little bitties. (Even those that were listed as "pediatric" therapists told me they don't generally see kids under 5). A few told me they had treated "a toddler" before and I knew I didn't want to throw Sam into the hands of someone who has treated ONE toddler! Based on the information I collected, I thought we could likely lodge an appeal with insurance and get them to pay for an out-of-network provider, but no go there . . . insurance said we had to check within a thirty mile radius, which in LA could be a two-hour drive, and sure enough . . . when I expanded the search to 30 miles, I found providers. Nevermind that we'd spend hours upon hours in a car, with the kiddo cramped in her car seat to get to therapy, right?! To see therapists who would discourage me from having her in 'devices' (like car seats) too much! Frustrating!

Regardless, our insurance only covers 24 sesions of PT/OT (combined) per calendar year, and with three sessions per week, we'll blow through those quickly (though I think they could allow more with doctors' letters, etc. but that just means MORE work, more advocating on our parts, as if we aren't busy/stressed enough, right?!) and once we've exhausted private insurance, the regional center will pick up the cost again.

We are appealing the regional center's decision to terminate her services, based on the above (and arguing that without the ability to see someone who specializes in developmental delay, Sam's quality of services is affected). I drafted a pretty strong appeal (patting self on back) and now we have to wait for an informal hearing. Even as a lawyer who argues all day long, I hate this process. I hate not knowing the result, and I hate that there's any threat to the quality of Sammie B's services. So, tons of stuff to think about and things swimming through our heads. I've been just generally overwhelmed, and we've tossed tons of possibilities around (just biting the bullet and trying other providers, which would require the long drive; asking the regional center to keep paying for PT and we'd do OT through insurance, etc.). At the end of the day, we'll just do whatever the regional center makes us do, but of course, we'll search to the ends of the earth or drive wherever we need to to make sure Sam gets quality therapy, but it stinks to have this little wrench thrown into this therapy regime that slowly, reluctantly become our "new normal."

In the meantime, we will continue seeing our usual PT (who doesn't take insurance), and we've switched to an OT (21 miles away) that takes regional center funding (for now - we have it for one more month definitely) and is in the process of becoming an in-network provider for our insurance company. As I also mentioned in my last post, this OT is our nanny's childhood friend, and already knows (and loves) our Sammie B. She's a new OT, fresh out of school, which I suppose on paper might make her less qualified than the old one, but her sunny disposition, excitement about what she's doing, intellectual curiousity about Sam's issues, and her general love for Sam make her MORE than qualified than the old witch ;o) who, despite 6 months of trying, Sam just never warmed up to (nor could any of us blame Sam!). And, we are just trying to remember that even if we do have to switch PTs ultimately too, things happen for a reason, and everything will work out, however they are meant to. I keep reminding myself to roll with it and just let life unfold, and stop trying to be the puppet master controlling it all . . . because really, its so out of my control.

But that doesn't mean I haven't lost sleep worrying about it, weighing our options, thinking what-if, what-if, what-if. And when I get lost in these thoughts, I've been finding myself thinking "whoah. . . am I really the one responsible for these heavy parenting desicions? For choosing something so important for such an important little creature? What if we pick the wrong option?" And I've been thinking of times in my life when MY parents were probably laying awake, wondering if they'd done the right thing, hoping someone would tell them which door to open. Like in high school, after we'd moved to a new state and I hated my new school and they had to decide whether they should switch me to private school and how they could possibly make that happen financially. Obviously at the time, I knew what I wanted (the private school), but never did I think about what a heavy decision my parents had or how much thought and worry probably went into the choice for them . . . and that seems like it was just yesterday. But it wasn't . . . now I'm the one making the heavy parenting decisions, just hoping and praying I do as good of a job as they did. That we open the right doors.

And with that, I leave you with a few fantabulous pictures of Miss Sammie B, playing, and standing (and smiling)! We are still getting some "spagetti" legs with standing attempts, but much less often, and she's standing for much longer periods of time. Inchstones.

Sunday, April 25, 2010

MOD Walk

Team Sammie B did the March for Babies walk in LA yesterday, and we had a great time. We had about 20 people walking with us, and we raised almost $3,000. It was a good reminder for me and B that although our families are far away (and we miss them!), we have made a great group of friends in LA that are so incredibly supportive of us on this journey. We both commented how special that felt!

Here I am crossing the finish line with THE Sammie B!

(Our shirts said "I am walking for the girl in lavender glasses")

And, here was the Cleveland Chapter of Team Sammie B walking the Cleveland walk :o) Nana and Papa!

After the walk in LA, we had "Team Sammie B" back to our place for brunch, then cleared that party out and hosted a Bris for our friends' new baby. And Sunday we went to meet yet another friend's new baby!!! Sort of a hectic and chaotic weekend, but so nice to spend so much of it with such fabulous friends. I'm paying the price for it now . . . likely will be up working much of the night, but well worth the great family/friend time.

In other (quick) news, Sam's Early Intervention services from the RC are changing . . . because of the state budget cuts to EI services, they are kicking people out with private insurance . . . even though NONE of the PTs covered by our insurance see toddlers with developmental delays (they are all PTs that treat people post injury, or only treat adults). I was freaking out at first, but we think we have a good case for an appeal (which I already have started drafting) and we've found a new OT that takes our insurance that we also happen to know and love (our nanny's best friend) so though I've been stressed, things are falling into place, and they seem to be happening in a very "this must be meant to be" kind of way. And, though I don't always deal well with change, I'm trying to remember that every now and then, a little change is a good thing! So a new therapist with some fresh perspectives, new ideas, . . . we are very optimistic that things WILL work out.

Saturday, April 17, 2010

Embracing our new DAFOs

It may be hard to accept that my child needs "equipment" to help her along her path (and certainly, I wish things were easier for her) but acceping these things is so much easier when they are so stinkin' cute!

Brian and our nanny took Sam two weeks ago to get fitted for DAFOs (ankle braces). The orthopedist that saw Sam thought they would help her with standing and balance (and get her on her way to walking). . . Brian picked out the colors and design, and he did a GREAT job. I told him I wanted purple and pink, but left the rest up to his creativity. For the last two weeks, he wouldn't tell me anything about the DAFOs except that they were purple and pink, with a little surprise. I had a feeling that "surprise" might include Bees, and look how cute!!!

We started yesterday with her wearing them for only an hour, and we'll increase by a half hour each day. So far, so good. She seems fascinated with them, and we think, sturdier on her feet. We will embrace anything that might enable this little girl. And these DAFOs? We embrace them!!!

Before they were cut down to size:

Leaving the orthotics place on Dada's shoulders:

Tuesday, April 13, 2010

On the Road Again . . .

Dear Bean:

Mama's out of town again for work. It's a super quick trip (I'm away for only 40ish hours) but still, it means I miss TWO bedtimes. I hope that someday, you will think about your "career" mama, and how I TRIED to do it all, and that you'll be proud. That you'll think I was "good enough" or better. I'm sure every mom worries whether she was/is a "good enough" mother, but working and mom'ing sure is hard. Somedays I wonder if I'm a good enough mother, other days I worry if I'm a good enough wife, and others I worry if I'm a good enough lawyer. If I deserve this big firm job. If I'm smart enough, quick enough, whatever. But all I can do is do my best at each thing, each day. And each day, I certainly do strive to be the best mama I can possibly be to you; your best advocate; your best cheerleader, just as my mama was (is!) for me. And each night, as I kiss your sweet face, I just hope that the next day, I can be even better. Because really, lawyering is okay and all, but at the END of the day, you (and dada) are what matter most. Because although I hope I set a good example for you as a working mama, I hope you never ever ever wonder what my number 1 priorities are. I love you my sweets, and I can't wait to see you tomorrow night. Just so you know, this morning, while you slept (snuggled in our bed) I kissed your sweet head, whispered how much I loved you, and walked out to my taxi with a heavy heart, wishing I didn't have to hit the road again! And tomorrow night, as you sleep, I'll slip into bed with you, kiss your sweet head, whisper how much I love you, and sigh a big sigh of relief that I'm back with you and dada . . . at home, right where we belong.

Your ever lovin' mama!

(PS . . . from the pics I received today, I'm pretty sure that my traveling is much harder on me than you! You are always having such fun my love, and your smiles brighten my days more than you could ever know!)

Sunday, April 11, 2010

March for Babies Like Our Sammie B

April marks the one-year birthday of this blog, and the one-year "anniversary" since we discovered that our Sammie B wasn't really a "typically" developing kid. It's been an intense year. Right after her six-month check-up, when her pediatrician referred us to an ophthamologist for her vision issues (which began the roller coaster ride of a year we've had), we joined thousands of others in the March of Dimes March for Babies in LA (and others nationwide). At that walk, I heard a fellow mom speak that gave me a perspective I've carried with me throughout this year, and a perspective that has been my motivation to keep going . . . I wrote about her speech in one of my first blog entries. Her words -- that her daughter handled the oxygen treatments and countless doctors' appointments "with grace" and that they saw those things as just "minor inconveniences" on her way to conquer the world -- have stayed with me. I now follow her blog, and her life, and she (and her sweet Madeline, who because of prematurity, never saw her second birthday) have been such an inspiration to me.

This year, we will be doing the March for Babies walk again . . . with Team Sammie B. I'm sharing below our email we sent to friends and family asking them to support our team. I encourage you to find a March for Babies walk near you, and to do whatever you can to support this great cause. Because what greater goal than to one day have all babies be born healthy.

It is with gratitude and love that we will be walking, along with the other members of "Team Sammie B," in the 2010 March of Dimes' Los Angeles March for Babies on April 24. We will walk not only for our sweet Sammie B, but also for the many other babies that are born too early each year as well as the pregnancies lost too soon.

As many of you know, our Sammie B was born 5 weeks too early in 2008, after a pretty difficult pregnancy (including 6 weeks on bedrest, which at the time seemed like such a hardship, but in retrospect so insignificant . . . we are so very grateful our little bun stayed in the oven those additional 6 weeks!). Sam spent the first seventeen days of her life in the NICU, an experience that forever changed us. We know that she wasn't the smallest, or the earliest, or the most unhealthy of the babies in the NICU, and for that we were and are grateful.

We've also had an intensely challenging year with Sam - from eye surgery to an MRI to physical and occupational therapy appointments, glasses, ankle braces and more. Sam has some challenges that might be related to her pre-term birth or might not be, but we'll never know. All we can do is continue to forge on and keep on keeping on doing every single thing we can to help her succeed (and knowing in our hearts that she WILL).

We will walk to remember how lucky we are that Sammie B made it to 35 weeks gestational age, that she made it out of the NICU, and for the intense joy she's brought to our lives (and continues to bring to us and so many others)! Because if there is any word to describe this journey we've been on . . . it has been one of intensity. Intense worry at times, intensely challenging at times, but more than anything, it has been intensely joyful. Without question, it has truly been the best eighteen months of our lives. And all because of the little girl in the lavender glasses. For HER we are all most grateful.

Help us support March of Dimes' worthy goals of providing funds for invaluable research into prematurity (including research on an issue near and dear to our hearts --- raising awareness of the risks of even the late pre-term births like Sam's) as well as providing resources to other parents (like us) who find themselves dealing with pre-term labor, NICU stays and the other challenges that so often come with prematurity.

With love and gratitude,
A, B, and S

Sammie's Adventures with Dada

I've been working A LOT lately. Probably good for me to keep my mind off worrying . . . but I hate being away from my little family. I try to keep my trips as short as possible (which means red-eye flights) but some traveling is inevitable. As B has been saying, the ONLY thing "reduced" about my work lately has been my pay! Its frustrating, but I knew going into this schedule that when cases were super busy, I'd be super busy and not part-time. I'm on a case going to trial in June, and so my hope is that I stay this busy only until June, at which point, I'll likely have already met my billable hour requirement for the year, and can take a lot of time off in July. I have a ton I could say about how I've been feeling about work lately -- I finally feel super vested in this case, like I WANT to win, which feels good (and makes working long hours suck a little bit less); I took my first deposition, and I think I did well, but I still struggle constantly with balancing it all. I waver between loving the excitement of litigation, liking that I'm somewhat of a go-to girl for partners, and hating that that means I'm away from my Bean and just wanting to be HOME. Its of course easier to bill 15 hour days when I'm out of town than at home, but at the same time, I just wish I could climb into bed at night with my B and Bean.

I'm super thankful to have a husband that is so supportive of my career . . . he ends up pulling more of the parental weight during my busy weeks, but he does so without grumbling, and I'm so thankful for that. At the same time, he truly seems to "get it" that my heart literally hurts when I have to get on a plane to go out of town without my family, and when I miss bedtime with the Bean. He's encouraging when I need him to be, sympathetic when I need him to be, but also says, "suck it up" just when I need him to as well.

While I've been working away as of late, Sammie B and her dada have had great fun . . . a trip to the zoo, lunch with friends, and just general goofing around. B sends me photo updates often, and while each little photo does make me sad I'm not with them, my heart soars when I see these tiny smiles.

Easter at the zoo:

Lunch with friends:

And just some general cuteness:

The Update from Super Doctor

In my last post, I said we'd had an intense appointment with Sam's pediatric neuro-opthamologist (who, because we trust him so implicitly, and because we think he's a genius, I've dubbed "Super Doctor"). We got a lot of new information. . . information I don't think we are totally sure what to do with yet.

For a very long time, we've noticed that when Sammie B is not focusing on anything in particular, her eyes occasionally drift upward . . . but then she immediately pulls them back to center. Super Doctor finally saw it during our last visit to him, and he got really quiet [Note: internal freaking out in mother anytime doctor gets quiet and scratches his head as if in deep thought]. After the quiet, he said, "okay, so things are starting to make a lot of sense here." It turns out he's NEVER seen it before [not what a mother likes to hear, especially considering he's been around a LONG time and is very preeminent in the field] but he knows what it is . . . some super small part of Sam's cerebellum that controls a lot of eye movement (pursuit) isn't functioning correctly. He's optimistic that that part of her brain (too small to show up in an MRI, hence our normal MRI results) is just delayed in developing, and that even if that's not the case . . . the rest of her cerebellum will eventually learn to accommodate (that's the whole concept of neuro-plasticity, where our brain forms alternative pathways where one pathway is deficient).

He actually said that this is a HUGE part of her motor delays, and just encouraged me to be patient. He said that motor skill wise we'd be better off if she were blind (scary to hear) b/c we'd use her other senses to motivate her to move, but with her, she's VERY visual, and seeing everything, but sometimes coordinating movements w/ what her eyes are seeing is just super hard . . . hence her motor delays (on top of the low-tone, which totally meshes with what the neurologist recently said . . . her motor delays seem worse than her tone). Anyway, he assured me that (1) he's not panicking but to the contrary, he feels very reassured that things are coming together and medically, it all makes sense and (2) that Sam WILL get there . . . albeit late late late . . . and that she may never be a tennis player (so outside of what I care about, but he said you wouldn't believe the parents that get upset when he says their kids will not ever have the hand-eye coordination to play baseball. Get a real concern, right!). He's going to follow her closely, and we have another appointment with him in May where we are going to sit and talk at greater length about what all of this means. He's also going to video the eye movements and present her case to his colleagues, which makes me feel even more reassured. I just feel like the more people we have working with us, the more promising future that lies ahead.

I do feel reassured, but of course there's that part of me (I've managed to stay off google for the most part; I promised Super Doctor I would) that worries that this is an indicator of something serious. It makes me nervous that he's never seen it in a patient. He did say however, that in monkey studies, where they've damaged this part of the monkeys' brains, and then observed, the monkeys do just gradually get better over time, because the other parts of their cerebellums accommodate . . . interesting! When he said, "I've never seen this in a patient, but have seen it in monkey studies," my little monkey LAUGHED out loud. She's definitely got a funny sense of humor.

Anyway, it is a little scary that the best "data" he had for me was about monkeys, but I also tell myself that without a person to compare her to, that means the SKY is the LIMIT.