Thursday, January 26, 2012

These Magic Moments

A few of my favorite moments of the last week or so:

- Sammie B has been calling out to me (e.g., to summon me to her room when she wakes up in the morning or after a nap) as "Sammie B's mama!" I dig it. There's no one's mama I'd rather be.

- Sammie B has an Obama shirt that she wears, and whenever we put it on her, she says "OBAMA!" (And my republican father's heart broke when she said THAT WORD before she'd said "Papa!") The other night, B told her he was going to watch TV because "Obama is going to be on TV," and she said, "OH MY GOD!" in the most excited voice. She wanted to watch it with him, and was so excited. About 5 minutes into it though, she looked at B and said, "No, Elmo" (indicating she wanted to watch Sesame Street instead). She stuck it out though, watching with her dada and clapping when the crowd did!

- Sammie B's new love for hugging her sister. And doing things to make her sister smile. Like making monkey noises. Can't get enough of my big girl trying to make my little smile.

- B had a meeting the other night so I was home with both girls. I decided we'd try doing story time and having Sammie B sitting on her potty (she peed . . . we are so not really "training" at this time, but just exposing her and trying to gauge her ability to know when she has to go and whether she gets that 'got to go' feeling and how much control she has, all concerns that come from low muscle tone). Anyway, I put Mia in a little bumbo-type seat next to Sammie B and they just kept staring at each other. Then, I started reading a book and they both just lit up and looked at me. I had one of those take-your-breath-away-how-did-I-get-here-are-they-really-mine-I'm-so-lucky moments!

We started a new vitamin supplement for Sammie B recently (CoQ10 and L-Carnitine, which has long been part of the "cocktail" of vitamins for people with mitochondrial disorders, but has recently been shown to help some people with hypotonia/low-tone more generally; our pediatrician said there was no reason NOT to give it a shot so we have). In the last week, FOUR of Sam's therapists have commented that her body just FEELS stronger. I'd felt it too, but it is a little harder to recognize for me because I'm with her every day and I knew she was on this new supplement, and like any mother, I am hoping for an effect. I purposely didn't tell any of her therapists about the new supplement, hoping that their opinion (if they noticed a change) would be a more accurate assessment than mine, which admittedly could be a placebo effect kind of thing. So, anyway, her adaptive PE teacher commented, then one of her PTs who had not seen her in a few weeks, then the PT who does her hippotherapy who had also not seen her in two weeks, then her swim teacher. Coincidence? Maybe, but we'll TAKE IT!

On the heels of that . . . check this out . . .

Standing, supporting/balancing herself with JUST ONE HAND while doing something with the other (I should note that we have the stroller wedged up against something so that it couldn't roll) but no one is helping her do this and she looks AWESOME! She did the same thing the next day at school on one of the play structures. Right now, it is just for a matter of seconds but amazing progress nonetheless.

She makes me so, so proud.

And, not to be left out, there are these kind of magic moments . . . the snuggly ones with my tiniest bug. I honestly think sleeping with my girls (either of them) is like the best.thing.ever. I love nothing more than cuddling up with either of them and catching a few zzzzs myself.

Magic moments.

** The countdown to the end of maternity leave is ON. I go back March 1. As it approaches, I am excited, anxious, nervous, scared, and a whole lot of everything. Excited to have my career back. Excited to head back into my office. Excited to forge ahead in the career that I feel like has been on pause for over 8 months because of bed rest, maternity leave etc. Sad thinking about the amount of time I'll be away from my little family and my two girls. Nervous about how we'll make it all work. I asked B the other night, "how will we do it?" and he said, "we just will. Like we always do. We figure things out as we go. And we do them." So, here's to that!

***A few posts in the works . . . (1) another equipment post AND (2) a post about our decisions on childcare for Mia once I'm back at work, and how that's going to fit into our "figuring it out as we go" m/o. Stay tuned!

Wednesday, January 18, 2012

Guess Who is Already THREE Months Old?

It sounds so cliche, but life with our little Mia truly is flying by. Mia is three months old today!! While this blog is intended (and likely will continue) to be primarily about my journey as a mother trying to navigate the world of special needs with and for my Sammie B, Mia will no doubt make appearances from time to time. She is, after all, part of our journey! (And a special little lady unto herself).

We are all continuing to adjust to life as a family of four. We take great care to plan what we call "special time" and "date nights" with Sammie B. Last week, she went shopping alone with B for clothes (and exclaimed either "so pretty!" or "too big!" for each outfit he tried on -- he trusted her fashion sense and purchased all the things she deemed "so pretty."). And this week, she had a dinner/grocery shopping night with me. I absolutely treasure my time alone with Sammie B. Her sense of humor and personality continue to amaze and inspire me.

As does her love for her sister . . . when Mia started crying yesterday after waking from a nap, Sammie B said, "Mama, pick her up!" And, for awhile I was a tad afraid of leaving them alone together . . . Sam likes to poke Mia's eyes and mouth from time to time (which Mia does not appreciate) but I'm convinced now this is to get a reaction out of us, so I've tested my theory and left them alone and watched from the doorway when Sammie B didn't know I was there. Before walking out of the room, I say "Sammie, can you watch Mia while I'm gone and if she cries, just tell her 'it's okay, Mia.'" (Just FYI - its not like I'm going out for drinks, just running to another room to grab something!) and each time, I come back to Sammie B just watching Mia intently (taking her job very seriously) and holding her hand. Pure sweetness. And when my mom was alone with the two of them, when Mia cried, Sammie B said, "Bottle!" She clearly is in tune with what her sister needs, and wants to protect her. Such a little lover.

I also cherish my time alone with Mia. Snuggles on the couch after Sammie B is asleep (we keep Mia up till about 10 and give her one last bottle before we put her down and then she's been sleeping till 5 or 6!!!) and snuggles and play while Sammie is at school or out and about with her fabulous nanny (we have really strived to keep her routine the same while I'm on maternity leave . . . and we knew that having her one "person" -- her nanny -- that she didn't have to share with Mia right away might help ease the transition for her to a family of four). Mia is a snuggly little lady that just loves her mama and loves to curl up into a ball on my shoulder, nuzzing her head under my chin and sleep, and I love that. Whenever she's not in my arms, her eyes follow me around the room, and she smiles whenever I get closer to her. Her smiles are huge and gummy and she coos and gurgles when I talk or sing to her like I'm the most delightful person in the world. I love that too.

I'm slowly slowly becoming less intimidated by being alone with both girls. It is not an easy job . . . to change floors, I have to carry one girly up and come back and get the other. Mia is a kiddo that likes to be held all the time, and I feel like this takes away from my ability to assist Sam with things. And Sam has had our undivided attention to play with her for three years. So, basically, when I'm alone with them, I constantly feel like I'm cheating one or the other. I know that will (hopefully) get easier as each girl becomes more independent, but it doesn't stop the usual mama guilt from haunting me now! B was on call two weeks ago for work, so I got A LOT of time alone with both girls, and felt intense guilt that I had to resort to letting Sammie B watch Sesame Street in the evenings when Mia was most demanding, so when he had to go out of town for a few days after that, I lined up evening sitters so that it would all be a little more manageable. With someone helping out, I was able to give each girl the one-on-one attention I want to give them AND even got another special date night out with Sammie B (which included a hair cut, car ride, and dinner).

A good time was had by all!

At three months, Mia still HATES the car and stroller (and most anything we put her down in . . . she likes to be held). And when I say she "hates" it, I'm talking the most heartbreaking tears, turning ten shades of purple and red kind of screaming . . . which has sort of made me hate the car too! I'm a constantly on-the-go kind of girl, but her disdain for the car keeps me home some days because I just can't take it. I have tried every kind of music under the sun, but it just doesn't do it for her! She LOVES being in the carriers on our chests, and most recently has decided she most likes to be facing out. She loves to be out seeing the world rarely falls asleep these days when we are out. It is as if she's terrified she'll miss something, and B and I are constantly amazed by how long she'll stay awake. When we are home though, she's usually good for a FEW quick cat naps and one good, long stretch of sleep in the afternoon, and as I mentioned, she's sleeping pretty well at night.

She's starting to tolerate some time in her play gym and longer stretches of tummy time (which is good, after years of working with PTs, we are pretty nervous about making sure she has enough tummy time!). Today she even ENJOYED her play gym while I got a few things done in the kitchen.

She LOVES watching her sister, and I love watching her watch her. We've recently starting propping Mia up on the couch or putting her in the bumbo and letting her just watch Sammie playing and she is so very content and enchanted with her sister. I cannot wait to watch these girls grow together.

In just three months, Miss Mia has already been to Disneyland, the San Diego Zoo, and Universal Studios. At each place, she happily stayed on one of our chests in the carrier, just taking it all in.

She's a chubby little lady with a buddha-esque belly and rolls on top of rolls. And she has cheeks and chinS that are just delicious. Delicious.

She is a snuggly little bug. She is Mia.

Tuesday, January 17, 2012

Sammie B's Getting A Walker!

I've eluded to the fact that Sammie B would likely be acquiring some new equipment this year, including a gait trainer (in fact, our desire to get her in one was a huge impetus for changing physical therapists last year). Well, after trialing several in physical therapy, we are FINALLY ordering one . . . a purple (her choice!) Rifton Pacer. Sam is sort of lukewarm about walkers when we are at physical therapy, but one thing we know about Sammie B is that she tends to do more when she's in the comfort of her own home, with her people . . . and we've been talking with her a lot about getting a walker at home, and she's super excited about it. Whenever I mention it, she says, "PURPLE!" and "I'm READY!" I've explained to her that we've ordered it and have to wait, but I'm hope hope hoping its not too long of a wait.

You may remember that our old PT was totally opposed to gait trainers (she believed that you don't want kids that have the potential to walk independently to become dependent on equipment), and that the PTs at Sam's center-based early intervention program had a different philosophy (their belief was that you don't want to hold kids back cognitively/socially by refusing to give them equipment they need to interact in "typical" ways with their peers and environment) . . . and that current research supports the latter, which drove us to switch PTs.

Anyway, after all the testing/assessments we've been through with our girl and a WHOLE lot of thought, we really, really believe that her lack of independence in mobility has held her back in other areas. She's dependent on adults for support in walking/moving and as a result, is always glued to an adult. Because of her dependence on adults for her mobility, all of her play and exploration has been adult-driven. As much as we may wish our girl didn't need equipment (I'd cut off my own limbs to make mobility easy for her), the fact is . . . we want HER (and her peers) to see herself as a three-year-old, and not a baby, and we want to give her every chance at independent mobility that we can. If adaptive equipment is a means to that, then we will embrace that equipment. I can honestly say that I am (like Sammie B) super excited to get her a gait trainer. This may not have been something we ever envisioned picking out for our child, but you know what? Here we are. And if it helps her and gives her a new found way to navigate her little world independently, then truly, I say (with enthusiasm) "bring it on!"

Over the last several months, we've tried several different gait trainers in therapy. All had pros and cons and there was no "perfect" one, but ultimately, we knew we needed to just pick one and get it for her to work in at home. So, pick one we did. At the end, it came down to two . . . the Rifton Pacer and the Snugseat Mustang.

The Pacer (although this one is a little wide for her, hers will be smaller):

The Mustang:

The Mustang was super smooth and fancy-like, and a little easier to move in sideways directions, but it is also a brand-new gait trainer, and one without a proven track record like the Pacer. And, it also has a seat (this one takes the place of SnugSeat's old Pony), which our Sammie B quickly realized she could sit on and do less work.

She would sit on it (like a bike) and use her legs to move herself around. Clever, yes, but not what we are aiming for!

So, that's why we decided on the Pacer. It's more work for her, and a bit of a learning curve, but we are confident she'll be able to do it, as is our PT and it is a little closer to a pediatric posterior walker, which we hope is something she'll be able to work up to in time (and then, we'll just strip off the supports and the Pacer can be a posterior OR anterior walker). Right now, she tends to sort of push the top half of her body really far forward then bring her legs to catch up, but with practice, she'll get more control and be able to move her body a little more as a unit.

If you'd like an idea of what one of these things look like in action (and what we are striving for with Sammie B), check out our guest star . . . JOE!!! (Remember him? Sam's Baltimore boyfriend?). Click here for a video of him moving and grooving in his Pacer! (Joe has wrist prompts, which Sammie B's Pacer won't have; she'll have chest supports, which he doesn't have. Most of the gait trainers have a bunch of different optional supports because every kid needs a little different arrangement).

In anticipation of Sammie B's purple Pacer, we've created a play space in what was our living room. I mentioned that our house has a lot of stairs and isn't exactly gait trainer friendly, but we rearranged things a bit, and moved a bunch of Sammie B's toys down to the living room, moved furniture out of the way, and created a big open space that she already loves. Once we have the gait trainer, we'll take the gym mat out of the floor and just let her loose to explore and figure out her new wheels.

We HOPE HOPE HOPE Sammie B's purple Pacer will get her moving and grooving like our friend JOE!!! Here's to hoping and enabling and empowering and moving and grooving :)

Sunday, January 8, 2012

Her Imagination and Moments I Want to Remember

Even during the "heavy heart" kind of times (like tonight when I just can't shake that "wish it were easier FOR HER" feeling after a weekend of realizing how very much my girl WANTS to be on the move), this little smile LIGHTS UP MY WORLD.

This was Sammie B on her way to the moon. Right before she said, "one two three four BLAST OFF!"

Her imagination just wows me some days. Like last night, we sat at her little table to have dinner, and she took her place mat, wrapped it around her water cup, handed it to me (as if it were a present) and said, "happy birthday, mama!" (I, of course, thanked her profusely for such a fantastic birthday gift.). And, lately, rather than reading books to her, she has been enjoying me making up stories. I'll stop along the way and let her fill in details, and she LOVES it and begs for more. Want to hear sweet one? Last week, I was making up a story about Winnie-the-Pooh running into a little girl in lavender glasses while he was out on a walk (she of course filled in that the little girl's name was "Sammie B") and then I said, "Sammie B was out walking with her very best friend," and I stopped, curious who Sam would say was with her, and she said, "BABY MIA!" And my heart melted. Melted.

On an unrelated (but super cute) note, last night, as I "poked" bites of macaroni-and-cheese with her fork for her, she said "thank you mama!" after each bite. (Our journey to self-feeding with utensils has now evolved to me poking, then her putting it in her mouth . . . inchstones. The little turkey will totally do the whole process herself for her nanny but insists that I do the poking on my watch.). Thanked me for every bite. Could she be any sweeter? I don't think so.

Her magic is my light. I adore her.

Tuesday, January 3, 2012

Best of 2011

I'm linking up with Ellen of Love that Max and participating in her blog hop of "Best of 2011" moments/posts. A few great moments come to mind for my favorite moments of 2011, including Sammie B's third birthday, which included three days of fun, fun, fun and celebrating with mine and B's parents and all of our favorite friends -- Sammie B's biggest fans; or B's birthday in November, when Sammie B gave him the gift she picked out; mother's day when I had the most perfect day, along with perfect wishes for a happy day from my big girl; there was our musical milestone in August; and our babymoon in October. Moments that lit up my world.

In 2011, I reflected on the labels and causes in our lives, and remembered that we are so much more than that, and that life is measured in happy. Just a couple of my favorite posts.

But the BEST moment of 2011 for our little family was no doubt in October, when our big girl met her little sister for the first time. The giggles, squeals of utter delight (saying "BABY MIA!" over and over) made my heart happier than its ever been before. It was as if Sammie B just couldn't believe that after all that talk about "Baby Mia" for months on end, mama's big belly, and other preparations for baby that we had finally, finally gotten a real, live baby. That moment goes down not just in the "bests" of 2011, but in the "bests" of my life. I have this picture up in our home, and I swear, I can be exhausted and having a terrible day, but I walk by this picture, and it takes me back to that moment, I can hear the little giggles and squeals of glee that were coming from my Sammie B, see B's eyes (and feel mine) filled with tears, and my heart just sings.

Sunday, January 1, 2012

Ringing in 2012

We've had a pretty mellow couple of days celebrating a belated Christmas and New Years Eve/New Years Day with Gigi. I've had the opportunity to take some glorious, glorious afternoon naps with my Sammie B and feel so, so refreshed. We've had good food (ham, turnip greens and black-eyed peas for good luck today!) and just had a wonderful time with one another. I couldn't ask for any better way to close out 2011, which was a big year for our little family. In 2011, we survived a not-so-easy pregnancy and bed rest, lots of ups and downs, and welcomed our sweet Mia into our family. While we had tons (TONS!) of love, joy, giggles & magic in 2011, I feel like we didn't get a whole lot of "easy," and truthfully . . . that's my biggest wish for 2012. That my little family (and B and I as parents) get to know a little more "easy" this year. A little less hard.

So, 2012, bring on the easy. Please.

Some other wishes and hopes:

- May B and I wake up each day and be the best parents we can be, and the parents that our two little girls need us to be. May I truly be "giving enough" to BOTH of them, and struggle a little less with that ever-present mama guilt and worry that I could/should somehow do more.

- May the therapists, doctors, teachers and others that walk this journey with us be intelligent, compassionate, proactive, take the time to truly "get" our sweet Sammie B, and work with her in ways that enable and empower her to be her very best self. May those people never underestimate our girl, but believe in her endless potential. May they (and we) remember that only she can reveal her best self to the world. We are just here to help her along the way.

- May we (and those that care for our girl) find ways to enable and empower Sammie B to find independence and mobility, allowing her to engage in the world around her in age-appropriate ways.

- May we always remember that "typical" doesn't have to be our goal, but OUR BEST is. And her best.

- If there's some answer to Sammie B's delays that we just haven't found, and if we are in any way doing a disservice to HER by missing it, may we find it this year. (We really took a break from "testing" in 2011, and while we don't desire to test for testing's sake, my hope is always that if there's something going on that's treatable, we'll be led to the answer).

- May we continue to be at peace with "no answer" if there isn't one to be found.

- May we find our "new normal" as a family of four, and find ways to enjoy each other, even in the midst of what might feel like craziness and chaos.

- With all the change of 2011 (new preschool, new therapists, new sister) behind her, may Sammie B settle into her new routine as well, and her new school, and thrive.

- When all the therapies feel like "too much," may we remember to take a step back, remember what's really important, and just enjoy one another.

- May this year bring inchstones, milestones and the inchstones that turn into milestones, and may B and I never, ever take those for granted, however tiny they might seem. (I just looked back at my New Years post from last year . . . I'd mentioned that Sammie B was "starting to combine two words" and had said "bye bye mama" . . . last week, she said an eleven word sentence. Progress. Amazing progress.) May we not get so caught up in the "where we want to go" that we forget how far we've come.

- May B and I find ways, time and opportunities to reconnect, and may we operate as a team in all we do to parent our sweet girls. And, if we need some help and guidance in doing that, may we find that help.

- May Sammie B always know that she makes me so very, very "happy and proud." (I've told her this so much that now when she does something great and I say "good job," she usually says "happy and proud!").

- As we continue to learn who our little Mia is, may her heart feel as full of love as ours already is for her . . .

- May my return to work go smoothly, and may I have the opportunity to give my career what I'd like to give it after having been "out of the game" for bed rest and maternity leave. May I (and we) find the ever-elusive work/life balance . . . or at least some semblance of it.

And most of all, I hope that 2012 is as full of love, joy, giggles and magic as 2011 was (and more!) and that 2012 is marked by a blossoming relationship between my two girls . . . SISTERS. May they each motivate, inspire, and teach one another, just as they are already motivating, inspiring, and teaching us. May these two little sisters start forming a friendship that will last forever.

My two little loves. May they both always know how very, very, very much I love them. Heart so full it could burst kind of love.

Bring it on, 2012.

From our home to yours, happy New Year!