Sunday, June 28, 2009

Busy Weekend

We had a very busy but good weekend. Friday, I worked from home so I could go with Sam to her PT appointment. Our nanny was working so the three of us went together, and we had a good session. Sam is finally starting to warm up to her therapist, didn't cry at all, and actually smiled most of the session :o) That makes it easier for me when I have to miss sessions b/c of work! Then Friday afternoon, I ran Sam to her pediatrician because she's been pulling her ear again and they will not do her surgery next week if there's even a hint of sickness. So we wanted to make sure she didn't have an ear infection. She doesn't!! (I really think she just tugs that ear b/c its the one the glasses seem to irritate). Then, we went to a friend's house for dinner. Sammie B was out until 11, but did great. She fell asleep at our friend's house around 9, slept on the way home, and went back to sleep easily after a quick change at home.

Saturday, our bestest of friends were in town from Chicago so we met them for brunch. It was a beautiful day and we ate outside . . . where Sammie B fell asleep in mommy's arms like a perfect little bean, and we captured the two pictures above. Br hasn't been feeling well at all (just allergies) so we canceled plans Saturday night so he could get some rest, which he did. I put together some new toys we bought and cleaned up around our house b/c we had an insanely busy Sunday planned -- a mommy-baby day! So . . . then, today (which is Sunday), we (me and Sammie) went swimming and had lunch with my friend and her one-year-old son, and then, we went to the park to meet some mommies and kiddos from my la mommy blog!!! It was really a fun day . . . and then we ended the weekend with a bbq'd dinner on our new grill that B put together today.

It was a fabulous weekend, but one of those super super busy ones that seems to FLY BY. And, no real rest . . . but totally fun. I know I'm going to have a busy week this week at work, so its good that I got some good Sammie loves in this weekend . . . though as reflected in my last Monday post - Mondays are hard for me!!! Always miss my bean!!

Wednesday, June 24, 2009

Father's Day

I'm writing about this a few days late -- b/c I'd hoped the 'guest blog' would be complete, but since B hasn't submitted it yet . . . my version has to do!!!

Brian's first Father's Day was a fun family day!!! We started the day with a walk to our favorite deli, where we ate on the patio. Then, we went for a swim. This was actually Sam's second time in the pool, but her first time in a raft -- we got her this little lady bug to float around in. She wasn't so sure what to think (and the water was cold) but after a little bit, she relaxed and floated around. Some of the other kids in our villa (that are a little older than her) got in and she was just fascinated watching them. After the pool, we came in and she was WIPED out and took a nap with me in my bed and then zonked out again on B's chest!!! Perfect end to his Father's Day afternoon!!!

In other news, as promised, I started counseling today . . . this is going to be VERY good for me. Wonderful in fact.

Had a crappy day at work for reasons not worth going into here. But, then I came home to my Bean and Brian and we had bath and bedtime. And, in the bath tonight, we got Sam to start splashing (a first) and she didn't want to stop!! I've been showing her how she can splash for awhile, but she's so timid about things like that. But tonight, she finally just started splashing with her toy. We would say "splashy splashy" and she'd do it again :o)

The last two nights B has had meetings so we've had two girls nights . . . lots of mama-bean time!!! The best!!! :o)

I'm super-busy at work (reference unorganized partner) so I've had a tough week schedule-wise --- hurrying home to be with her so B could go to her meetings and then working after I put her to bed and into the wee hours of morning. No good. If only everyone could be as organized as yours truly.

Work stinks sometimes (lately, most of the time) but there's nothing better than coming home to my little bean and her HUGE smiles!!! I love my little family. Love it.

Monday, June 22, 2009

Pouring my heart out . . .

Sam does amazing things. Every single day. She smiles dozens of smiles a day (as you can tell from her pictures); she giggles; she plays peek-a-boo with us (though she usually can't wait until we get out the whole "Where's Sam?" before she reveals herself); she attentively listens to books when we read to her (and holds them for us sometimes too); she knows her name is "Samantha" and she smiles when we say it -- she lights up actually; she babbles incessantly and sometimes its like she's speaking a sentence; she thinks our dog is the funniest thing on earth and flashes him big smiles non-stop; she's gotten fantastic about tummy time; she's snuggly and gives the greatest hugs ever; she reaches for our faces to stroke them when we hold her; and we fall more in love with her every single day. Really, not a day goes by that I don't find myself AMAZED that I can love another being as intensely as I love Sam. And, I love all these amazing things she does. Yet, all too often I find myself focusing on the things she can't do rather than the things she can do. Sam is terribly uncoordinated and has terrible balance. She seems clumsy when she reaches for things, and at 9 mos. old (in two days), Sam can't sit unassisted consistently. When placed in the tripod sit, she often falls to the side. She can't crawl, and she's just beginning to consistently roll on her own. I have a hard time saying these things out loud, and even typing them. But, what I realized tonight in physical therapy (after she sat for THREE WHOLE MINUTES - her record) is that I've got to look for the progress, and stop worrying about a future I can't predict. I'm not sure HOW to do that, but I do know there's been incredible progress in the months we've been doing PT. When we started, she cried when we put her on her tummy. She now LOVES being on her tummy. When we put her on the exercise ball, she struggled to remain balanced. She now is balanced. She couldn't sit unassisted AT ALL. Then she could for a second or two. . . . now she consistently can for about 10 seconds, and sometimes, like tonight, she surprises us. And all this progress with PT only once a week, but now we've started twice a week!!

Everyone who knows me knows that I'm a planner. I like to live life by MY script. I'm type A. I'm a control freak, and uncertainty makes me uncomfortable as hell. I'm a lawyer, and good lawyers anticipate what the other side is going to do and stay 10 steps ahead of them. I don't like to fly by the seat of my pants. I skip to the end of books and I never mind if someone spoils a movie or TV show b/c I like to know what's going to happen. Yet, with Sam, we can't know. Her balance and coordination issues (due to the hypotonia) WILL (and already have) improved. Doctors think by age 3 or so she may even be caught up with her peers. But, there's no guarantee. She may have balance issues always. She may have some "odd movements" about her always. And we can't know. All that we can do is continue to plug ahead and work everyday on the things we CAN work on . . . with the PT and our nanny and all the others on our team. Sammie's team.

I feel like I haven't been totally honest in my blogs. Yes, I've admitted that I'm struggling, but then, after a good doctor's visit, I think I portray that all the worry is over, and I'm fine. But the truth is, it still sucks. It sucks to have to take your daughter to specialists. It sucks to worry. It sucks that my little Bean has to have PT to "learn" to sit. So, really, I'm not all that "okay." I'm still struggling even though we've gotten really positive prognoses (is that plural?) from doctors. I still can't stay off the damn internet and stop reading stuff that feeds my panic.

I'm envious of my husband's ability to live life without allowing worry to consume and destroy him. I asked him last night how he does it. How does he NOT worry? And he said, "because worrying doesn't do any good." I know that. But it doesn't help me turn the worry off. And, he said, "I just focus on the things we can do to help her today. And we are doing those things. I don't worry about when she's in middle school." (I've already told him that I'm worried if she always has movement issues, kids will make fun of her -- talk about not being able to live in the moment). My closest friend assures me that I'm not crazy. So that's good. But I somehow need to learn to live "one day at a time" and that goes against the very core of who I am. But, I will try. I'm a glass-half empty girl. I'm a "what-if" girl. But somehow, I've got to learn to just live life one day or one moment at a time, and not constantly imagine what COULD be a year, or two years, or three or ten years from now . . . b/c each of those "coulds" is just one of infinite possibilities of what WILL be, right?

My friends' babies that are right around Sam's age (and younger) are passing her by with milestones. Yes, I know I shouldn't compare, but its impossible not to when suddenly your entire existence becomes about trying to get your child to do those things. I want my friends to share with me the great things their babies are doing. I'd be sad if they felt like they couldn't. [So, for any of you that happen to be reading this and suddenly worry that you've hurt my feelings -- stop -- this is my issue, not yours, and I will work through it!]. Really, I DO want to know . . . and I know that my truest of friends will be just as happy as I am the day my Bean crawls across the room, even if their own babies are running up stairs by then. Their babies have their journeys, and Sam (and me and Brian) have ours. Its okay for those journeys to be different. Sammie B is who she is and together we are writing her life story. Day by day. We can write one page at at time . . .

I want to be able to handle all of this with grace. In fact, that's REALLY REALLY important to me, b/c I want to set an example for my daughter. But, there are days I just wish the world would shut up and stop saying stupid things. I know I'm being overly-sensitive (like when my heart feels sad when we go to restaurants and they ask if we need a high-chair b/c she can't sit in one yet). But, if I hear "those aren't REAL glasses!" or "oh cute sunglasses" one more time, I might shove her glasses in someone's nose (actually, I won't, b/c those "sunglasses" cost $300!). And, (to warn you) if one more person says anything else along the lines of "oh you just wait, she'll start moving and you'll wish you were right back here before she could crawl. you'll get tired of chasing her," I might punch them. Because, NO, I will not be tired of chasing her. I want with every fiber of my being TO BE chasing her!

Mondays are my hardest days b/c I miss her while I'm at work the most those days. After two full days of Sammie loves, its hard to go to work on Monday. And with that emotion, I probably let myself feel a little too crazy about the other stuff too. But today, I just had a rough day. I felt obsessed and consumed with worry all day. I called my friend on the way home and then sat in my car and cried for 20 minutes before I could come inside. I told my friend, "I just need her to SIT so I know she's going to be okay." In some ways, that's unfair. I can't place all this pressure on a 9-month-old baby! She may not KNOW about the pressure yet, but its unhealthy. And, its also unhealthy to feel that way all day but then when she sits for a full 3 minutes in PT, to suddenly feel like, "oh its okay." Because I need to know (and act accordingly) that WE are OKAY even on the not-so-good days. Even on Sammie's worst days, she's still the most incredible thing on earth. I believe that with all my heart, but I think sometimes, the crazy person in me keeps me from acting accordingly. But, the kind of mama she needs is one that never stops seeing all the amazing things she CAN do. Not one that's obsessed with what she can't do.

I MUST somehow learn to enjoy the moment and stop obsessing about what never may be. I can always imagine the worst-case scenario, but what's the point if that's only one of many possibilities (in the words of my amazing husband, whose endless optimism compliments me well and keeps me sane - most of the time).

As I read back through this, I know what I NEED to do . . . I know what I want the end result to be (the end result for me in terms of my state of mind) . . . but I don't know how to get there. And because it means SO much for me to get there, for me to be a healthier person, so that I can also be a better mom, better wife, better lawyer and better me, I've decided to start seeing a therapist. Here's to hoping they can help me put all of these thoughts into action and here's to hoping I can fit in MORE appointments than we already have!

The sweetest thing . . . . is to nap with you!

If I had to pick one way to spend the rest of my life, this might be it (though I'd have B napping with us too) . . . there's nothing I love more than snuggling up with my Bean and taking a nap. Everyone knows I LOVE NAPS and always have (Brian once joked that the second I fall into bed for a nap, a smile spreads across my face, no matter what my mood was before that moment) . . . but the addition of this little Bean to my naps makes them OH SO MUCH SWEETER!!!

We had a great father's day weekend -- lots and lots and lots of smiles and giggles. Stay tuned for an extra special treat - a blog from a guest blogger - the DADDY!!!

Wednesday, June 17, 2009

OT Evaluation

I worked from home today because Sammie B had her OT (that's occupational therapy) evaluation with the regional center today and I wanted to be here. I wasn't sure what it would be like to be home while someone else took care of my Bean, but it was fine. I actually stayed in my office and worked most of the day except when I came down for a quick bite to eat (and a few kisses and hugs of course!). It was nice to be able to see our nanny with her, and it just added to my confidence in the nanny!!! I snapped the picture above when I came down for a drink and found the Bean sound asleep after a bottle.

The OT evaluation went well. I get SO nervous before these appointments, and I feel nervous the whole time. I just HATE all the labels -- developmental delay, low muscle tone, etc. I can't help it -- I'm not even sure that "nervous" is the right word, but I guess all the labels and talk make me just feel anxious. Anyway, the therapist that did the evaluation is not recommending OT for Sam at this time. He doesn't think she really needs it, or would qualify. She is only "moderately" delayed so she really only qualifies for 2 hours of service per week, and we already have PT those two hours. Plus at this age, the PT and OT overlap quite a bit, so he thinks its better to stick with one therapist and program. But, we are going to do a check-in evaluation with him in our home once a month in case any issues arise later that would require OT. This still has to go before the regional center committee but this is his recommendation. He was super nice though, and very helpful. These regional center vendors are all so knowledgeable and supportive. He gave us a few more practical ideas on how to work exercising into our lives so that it doesn't feel like its controlling us . . . I actually didn't say how I'd been feeling, he just volunteered it and its exactly what I needed to hear -- this time in Sammie's life (her babyhood) is short . . . and its so important to ENJOY it and let her be baby and us be mommy/daddy. So, we can work exercising in 5-7 times per day (he suggested after each diaper change) but in between, just focus on enjoying her . . . which is great advice.

We got Sammie's pink glasses back (with the new lenses) BUT we've all fallen so in love with the lavender ones that we think the pink should be our back-up pair!!

I have a filing at work next week -- a fairly substantial brief that I must write so work is going to be crazy for a week or so . . . I suppose there's no time like the present to THROW myself back into it and finally (hopefully) feel like I'm back in the lawyer game.

Tuesday, June 16, 2009

Weekend with Nana and Papa

Nana and Papa (a/k/a Brian's parents) came to visit us this weekend, and all had a great time! We gave our nanny the day off on Monday, so Nana and Papa got a day ALL to themselves with Sammie B :o) We also had a physical therapy appointment Monday night, so Nana got to participate! And, it turned out to be one of our most positive sessions ever :o) Sunday night, I was helping Sam sit and let go for about 10 seconds . . . which was her record. We were excited to tell our therapist Monday and hoped Sammie would show her how great she was doing . . . and she did! We think she was showing off for Nana b/c she sat for 30 seconds SEVERAL times (the PT said sometimes, if it happens just once, its a fluke, but this was no fluke - Bean is getting stronger!) She did this while me, Brian, Nana and the PT all sang and clapped. She just sat there, looking at each of us, in total wide-eyed wonder. So, it was a great session. I know there will be ups and downs, and so I'm trying to not get my hopes up too high (baby steps!) b/c the progress may be slow and steady, but this is definitely big news!

Our nanny thought she sat really well today too, and tonight she did once for us, though we tried working with her again around 7:30 and she would have nothing to do with it -- too close to bottle/bedtime! This has been such a surreal experience. I know someday we will just look back at this time fondly, and really, we don't know what it's like to have a baby that doesn't need all this "practice" but sometimes I do feel like it runs our days (and I know that ANY baby runs the new parents life, so that's not what I mean . . . I guess I just worry that all the stuff we "have" to do with her will get in the way of remembering to just stop and smell the roses with her during her short time as a baby!) But, we really have to be conscious of how much time we spend running around b/c its important that Sam not spend too much time just sitting in a stroller/car seat, etc. So, we try to work in the "exercise" sessions throughout the day and becoming part of our routine!

Brian and I have big plans this coming weekend . . . friends are baby-sitting while we go out to lunch and a movie. Brian has really pushed for this, and I've been hesitant. Ever since Sam was born, I've had a really hard time leaving her. I still feel like the NICU experience robbed me of time with my baby and I know I HAVE to get past that. On top of that, I feel like I spend enough time away from her all week that the last thing I want to do on the weekend is leave her again. In spite of all of that, I know its important that we take time for us, but honestly, sometimes I just feel like b/t work and Sam, there's nothing left at the end of the day for ME much less US. But, we shall start trying to make time for that . . .I know this is all totally normal -- new dads wish their wives would "let go" a little and the new moms find it especially hard to do. Hopefully we find a routine that works. We've had SO SO many ups and downs, I'm just hoping we are able to hit cruise control for awhile, particularly after we get over the surgery hump.

Brian's parents and my mom are all coming back in just a few weeks for the surgery. We are lucky to have two sets of grandparents who would come at the drop of a hat if we just ask . . . no amount of money, inconvenience, etc. could keep them away! Someday, Sammie will know how lucky she is too :o)

And now, I must sign off and work . . . . going to be a late-nighter!

Thursday, June 11, 2009

Happy Lady!

Just thought I'd post a pic of one of the many smiles of the day! We took this picture right after she had her bedtime bottle on the boppy in daddy's lap. Sam is truly SUCH a smiley baby . . . everyone that meets her comments on her many smiles and how easy-going she is. She giggles more each day too, which is such a treat!!! Her giggles are like little hiccups/squeals combined and we can't get enough of them. She is a SUPER easy-going baby, but does have an opinion and when she needs to, she lets us know . . . she's recently started getting mad when she has a toy or something and we take it out of her hand. She gets mad sometimes at the end of bath time when we take toys to put them away . . . its neat to watch her personality continue to develop!

Week 1 with our new nanny has been WONDERFUL. Each day I left for work with the most peculiar peaceful feeling . . . one that I haven't felt with ANY of our other childcare providers. I also found that when Sam smiled each day when our nanny arrived, I felt relief and not even an ounce of the jealously I worried I'd feel about a nanny (and none of the "but will she know I'm the mommy?" stuff either that I thought I might feel). Maybe its due to the drama that got us here, I'm not sure, but it just feels GOOD to know she's happy during the day, and allows me to try to focus on work a little better (though of course, I miss my Bean during the day). And every time we come home (and its not always at the same time) the two of them are playing and Sam's all smiles.

I had a great talk with the partner at work that I am currently working with about how I've been a little checked-out and feeling guilty for it . . .he asked me what I'd been working on, and I just came clean . . . "well, not much really, but I know I need to get myself back in gear . . . " He was actually super understanding and said I needed to let myself off the hook . . . that everyone knows I'm a go-getter and conscientious, and that's why he wants me on his cases, but that sometimes, other things in life require our attention and that I have to put Sam first and he understands that. WHEW! So, I feel like I'm sort of getting a new lease on the work life too . . . just gotta prove that I'm not kidding when I tell him that I'm ready to put myself back into work 100%. . . .

A few things to be thankful for (besides the above!) - last night I put Sam on her belly on the floor while I got laundry out of the dryer and I turned around and she was on her back and quite pleased with herself! She's rolled over a few times in the past, but always on accident . . . I think she's finally becoming purposeful with her movements. Today in her PT (after she whined the first half of the session over a bad tummy) the therapist also commented on her rolling . . . we are doing less and less of the "work" in rolling her and she's just getting stronger and stronger! She also held her toes up with her fingers all by herself (usually we hold her feet up toward her mouth so she can play with them with her fingers, but now she held them herself). She also let the therapist put her in the crawling position and held it by herself for a second. These things all sound simple (and maybe for most babies) but they are particularly hard for our Sammie b/c of her especially weak shoulders/arms (where her lowest tone is) but she's getting stronger :o) And, tonight, when Brian got home from work, I was holding her, and she reached over toward him with BOTH arms :o) Best thing ever . . . this little Bean is growing up!

This weekend Nana and Papa are visiting . . . . and we just know they are going to be in HEAVEN playing with the Bean. They haven't seen her in person in a few months, and she's really grown and changed so much!!! They are sure to get lots and lots of smiles, giggles, squeals and love!

Tuesday, June 9, 2009

And we exhale! (this is going to be LONG)

And, again we EXHALE. Basically, I think we've now seen THE most specialized doctor ever (really, he's a pediatrician, neurologist, AND ophthamologist all rolled into one super human doctor ;o)) and I told myself (okay, someone very wise -- that's you Auntie D -- told me this and I believe her) that this is THE guy we've been pointed to from SO many sources and he's THE expert in his field so if he tells me not to worry, no more worrying . . . (For those of you who want the brief update on today's doctor's appointment w/o all the additional rambling, see blue font ;o))
This doctor (we'll call him Super Doctor) was recommended by our neurologist (and our PT AND another mother) because he's not only a great opthamologist, he specializes in neuro-ophthamology so he's adept at tapping into the complex interation b/t the brain and eyes. She (our neurologist) thought that if the issue with Sam's eyes was caused by some sort of neurological coordination problem, Super Doctor would be the one to figure it out. So, we saw him. And as I posted last night, I have been a ball of nerves. But, the good news is -- we basically heard (again) the same things we've already heard, just with more precision (and precision gives me confidence). Actually, it's funny . . . I realized as I was driving home from Sam's doctor's appointment today that as we've gone up the chain of "specialty," the story we have been hearing remains the same, but just becomes more precise:
- Pediatrician said Sam's motor delay is just low muscle tone and bad vision. She "wasn't worried" and thinks with time (and PT) these issues will all be fixed.
- Neurologist went into more detail, but again said it was just low muscle tone and bad vision, with some more technical language thrown in. She "wasn't worried" and thinks with time (and PT) these issue will work out. She did think that b/c of Sam's bad coordination, we should see Super Doctor, who could determine whether there was some underlying cause (specifically, something in the cerebellum) that was causing BOTH the vision and muscle tone/coordination problems.
-Super Doctor - Again, more detail -- motor delay (both fine and gross) caused by low muscle tone. He doesn't think its any "condition" or "disorder" but rather "benign congenital hypotonia" (i.e. low muscle tone w/o any other cause). I'd read about this some (and hoped and prayed that's all it was that Sam had). Basically, some kids are just born with low muscle tone. It's more common amongst premies, but others are born with it too. They tend to be delayed in their motor skills, but eventually catch up (usually around age 3). Usually the only lasting sign or symptom is maybe a little bit lower than normal coordination. That's it. And, the treatment is PT, which we are doing. On top of that issue, Sam has the vision delay. He said that if this were caused by some other thing (like a neurological disorder) he can usually tell from the eye exam and eye movements, and he didn't see any red flags with Sam. In his words, the low tone and the vision issue are just two unfortunate coincidences -- totally unrelated, but confounding factors in terms of her motor delay, but both are "fixable." Same thing we've been hearing, but a whole lot more detail, and certainty. EXACTLY what I needed. He also determined that she does have TWO types of strabismus (the eye crossing) - accommodative (b/c she's so far-sighted) AND infantile strabismus (which is the residual crossing we see, even though it is slight, even now after her vision is corrected with the glasses). SO, she does have to have surgery on her eyes, but its a pretty minor procedure. Its scheduled for July 6. She will be under general anesthesia, which is worrying, but its an out-patient procedure with quick recovery and very very little pain for the bean. We will get through all of that.
I am so relieved. I feel like I can (and good thing, b/c I HAVE to) get back into life. Back to work (emotionally, mentally -- physically I've been there). So there it is. Thank goodness for incredibly brilliant, specialized doctors. And, thank goodness for the consistency b/t the stories amongst our fabulous physicians, which gives me such confidence.
After her appointment with Super Doctor, we went to pick up her second glasses. This is her spare pair with transition lenses for outdoors and the stronger prescription. I think I might like the pink better, but she's stinking cute in both! The pink frames are now sent off for new stronger lenses as well, but they'll be back in the rotation in a week or so.
So, we have all the information we need, at least for now, and from here . . . we move forward with ALL the fabulous resources that will help our Sammie B grow and learn. We've got a fabulous nanny in place (already, its day 2 and we have the utmost confidence in her); we have PT scheduled; and an evaluation for occupational therapy (OT) in the works (that's more for the fine motor skills; PT is for gross). We are doing everything our Bean needs, and we have fabulous doctors looking out for her and we've truly done our due diligence in picking the most fabulous of fabulous so I leave it in their most competent hands. . . . . . and I get to just live and enjoy my little BEAN! YIPPPPPPPPPPPPPPPPPPPPEEEEEEEEEEEEEEEEEEEEEEE!!!!!!!

Monday, June 8, 2009

Another "Night Before" Post

Tomorrow is the neuro-ophthamologist appointment, and of course, I'm a ball of nerves. I also have a motion to write for work. It's due Wednesday, but I'm going to try to stay up tonight so that the motion is DONE before the doctor's appointment (or at least substantially done) b/c I don't know how productive I will be after the appointment.

Despite the obvious anxiety, I'm doing okay. We spent the weekend in Nor-Cal with some of our favorite people on earth (people that are just good for my soul) and everyone enjoyed Samantha so much (as do we!) which really helped me to focus on the good and try to put the worrying aside and just LIVE for a few days. It felt wonderful! And today I had a long talk with a friend at work that again reminded me to not "go there" until I have to . . . to stop allowing myself to constantly think of the worst case scenario. I know I do that as a defense mechanism, but it has the potential to destroy me.

So, that's that . . . appointment tomorrow; fabulous fabulous weekend in Nor-Cal . . . and lots of giggles with Sam shared by all (especially her big cousins!) The giggles are the BEST!

Saturday night we even had a "slumber party" -- the Bean slept in bed b/t daddy and mommy ALL night! Brian likes to act resistent, but he LOVED it. She slept so well, but we didn't!!! We were both really conscious of her there . . . and she was wiggly (which is a GOOD thing -- her doctor would be happy to hear about her "scootching" in her sleep).

(And, let me take a moment to say THANKS to all my wonderful supportive friends and family members who read my blog and who's hearts hurt for Samantha, Brian and me when they read of our worries . . . it means SO much to all of us . . . so everyone, thank you and fingers crossed for tomorrow!)

Oh the things we'll do for muscle tone!

Sam's PT exercises. In the top one, she's using her "Sammie" stool to practice using her arms to prop her while she sits. Then, in the middle one -- that's one of her more advanced exercises to help her bear weight on her arms (to prepare for crawling). And, in with the hard work, we mix fun -- like stories (but notice she's sitting to hear the story in her Tinkerbell chair we bought special for PT).

Wednesday, June 3, 2009

Finding (and making) the moments that will define us . . .

We had a little set-back today. Last night, Sammie B had a little fever, but we gave her motrin and it went down but then she had a crabby night. So, I decided to just stay home and take her into the doctor since we have plans to go to Nor-Cal this weekend and I'd hate for her to get worse. The nanny arrived, and she told me that twice this week, Sam has been playing and has "tensed up" and her eyes have rolled back, and it looked kind of like a seizure. I had seen Sam do this one other time, but since we've seen so many freaking doctors that all tell me Sam is FINE (and thereby, make me feel a little crazy when I feel like they might be missing something), I had sort of forced myself to believe it never happened. But, when the nanny mentioned it, I realized, I am NOT crazy, and I decided to call and see if the neurologist we saw could work us in. She was so wonderful to talk to before, and I wanted to make sure she didn't find these episodes too disturbing. She had a cancellation so we went in. She doesn't think this sounds like seizures, but she's ordered an EEG to be sure. We also talked more about the weird things Sam does with her eyes. She still thinks the best person to figure all of this out is the neuro-opthalmologist we are seeing next week (took us awhile to get an appointment). She says at worse, Sam may have some sort of movement disorder that prevents her from coordinating her eye movement (and that would also explain the occasional head shaking, though that happens MUCH more infrequently). Basically, its the chicken/egg phenomenon -- could be that the vision delay is causing ALL the problems, or it could be that something else is causing it all . . . I hope its just the vision because that is easy to deal with. The neurologist again emphasized that all the cognitive milestones are met, and Sam is clearly communicative. And the neurologist still thinks this could all be totally benign, weird baby behavior that will work itself out with the physical therapy and glasses. But, "disorder" is never a word you want to connect with your child. She wasn't pessimistic -- she was just the opposite, but I still felt like this appointment was more discouraging than our last appointment with her. So . . . the roller coaster continues. It also seems like we may have to just keep trucking with no real answer for awhile . . . that's the way the doctors make it sound like it just is with babies. Doesn't mesh so well with my personality! But, even if this is some disorder, the ONLY thing we'd be doing for it is the PT, which we ARE doing, so we wouldn't be doing anything differently, we'd just have a label.

I'd be lying if I said I wasn't struggling. I am. To be totally honest, I'm struggling to make it through each day. I am struggling to keep putting one foot in front of the other, to go to work, do my job, and to do anything other than just sit and hold my baby. But, I HAVE to go to work, and I HAVE to do my job, even though I'm consumed with worry. People say I can't let the worry consume me, but I don't know how. I have to work on this within myself . . . I am, and will always be, my daughter's best advocate. That's what mommies do. But I'm emotionally EXHAUSTED. DRAINED. I told Brian I'm envious of his ability to compartmentalize. He goes to work, and from 7-4:30, he does his job. Yes, he worries, but he just goes and he does his job. I feel like I'm constantly distracted, constantly consumed by this knawing worry. It doesn't help that my job isn't one that lends itself well to compartmentalizing -- I regularly work from home, get calls in the evenings, emails that have to be answered, etc., so work constantly spills over into home, and now, home constantly spills over into work. Driving home from the doctor, I was on the 405, and suddenly realized I'd been driving for quite awhile . . . I was 4 exits past our house. I was just driving . . . that pretty much sums up how I've been getting through life these days.

I did realize tonight, when I laid down to take a nap with Sam and we shared a few giggles before she fell asleep, that no matter what challenges we face, we cannot let those moments define us. The smiles, giggles, and love will be what defines us as a family . . . and I can't let worrying consume me so much that I can't enjoy those defining wonderful moments. I need to just take life one day at a time, one moment at a time, and not worry about what the next day will bring. Easier said than done.

My mom sent me the best email after I sobbed on the phone to her . . . telling me that after I was hospitalized for a serious eye infection (and really high fever w/ fever convulsions) that it took her more than a year to let me out of her sight. She moved a twin bed into my room, and slept next to me. We slept together until I was five, and then I said (on my 5th birthday) "I'll sleep by myself now."

I know I'm not the first mother to agonize and worry. But, I can't help but wonder when life is going to cut us a break. Since August 18 (the day I went into pre-term labor and was put on bed rest) I feel like life just keeps knocking us down. And I'm angry. I'm angry that things that seem to come so easy to other babies are not coming easy to mine. I just don't want my baby girl to struggle.

But, my goal for tomorrow is to just get through each moment, and look for those moments that I want to define my family and enjoy them. And to remember the new mantra - the smiles, giggles, and love define us.

(the fever -- no big deal -- in the midst of this crazy day, we also saw her pediatrician and she's now fever free anyway -- hopefully she has a better night tonight -- I don't mind rocking her in the middle of the night ;o) just don't want her suffering!! -- oh, and I also let the nanny go, B is staying home tomorrow and is off Friday -- what a day!).

Tuesday, June 2, 2009

Seriously?! Seriously?!

For reasons I'm too tired to go into (well, in short, she lied about being okay with having her income reported, and sprung it on me her first morning here, AS I was walking out the door, that she needs cash -- nevermind the fact that I'd emphasized to her FOUR times that we'd be doing the nanny thing on the up and up) we will be having YET ANOTHER nanny start on Monday. SERIOUSLY?! But, we have high hopes for this one . . . she comes recommended from a friend (her son's pre-school teacher:o)) We are paying more for her but at this point, we have to do what we have to do. And, Sammie B is of course worth EVERY penny.

So, another nanny down. In other news, Sam was constipated and had her first prunes this evening (they did the trick); I feel a little tired and gloomy these days and am having trouble focusing on my J-O-B when I'm there (I think b/c the nanny business is so consuming . . . I'm just hoping this one starts, is wonderful, and I can concentrate on my J-O-B while at work again -- I want to feel "back in my game" again . . . I feel like I did for awhile after I first went back to work (prior to this last leave) . . . it's like as soon as we feel like we've hit our stride, life slaps us with something else); Brian is likely getting two furlough days a month, which stinks.

But at the end of the day, my little bean's smile melts my heart. So, I suppose none of the other stuff (which really, isn't this nanny thing fodder for a sitcom?) really matters!

I'm SO frustrated with the nanny situation . . . the undocumented workers/for-cash-only workers AND the people willing to hire them. I don't care what side of the political spectrum you fall on, there's reasons NOT to feed the cash-only culture. For one, it allows people to exploit the workers, and second, it royally screws people like Brian and I who actually want to do things legally. SO frustrating!