Thursday, August 26, 2010

A Love Affair

Sam has fallen in love. Head over heels. Unfortunately, he's green. Cute, but green. And ogre'ish.

I guess its always funny what kids get attached to or what toys they love or hate. She really likes farm animals, so I bought her one of those little people farms, thinking she'd LOVE it. I even kept it in my car for days because I wanted to get it out when I had time to sit and play with it with her for awhile. Didn't want anyone else to have that honor. I was so excited. Guess what?! Her -- not so excited. Kind of luke warm about it actually. And another time, B was at Target and decided he wanted to bring a surprise home for her. He was actually deciding between Elmo and this "Little Abuelito" doll (can't find an online picture to link to, but its a little old man with glasses), and because the latter had glasses, he thought she'd LOVE him. He came running in the door, ecstatic to show her what he'd found. A DOLL. WITH GLASSES. She burst into tears. Scared to death of the Little Abuelito. Abuelito went back to Target (maybe many kids had similar reactions and that's why the little man is not available anymore?!), and we got a tickly Elmo instead.

But this shrek. Wow. She got him when we were at B's cousins' house in Northern Cal on our little vacay earlier this summer. Their kids weren't into him, and Sam fell for him. Hard. So, we got to take him home. Her face lights up when she sees him. And, if you look back at this blog over the last few months, you'll see Mr. Shrek has made many appearances. It's love.

Sunday, August 22, 2010

A SUPER Fabulous Saturday

I NEVER fly by the seat of my pants. I'm a planning type of girl. Not spontaneous at all. But this weekend, B and I both needed to do a ton of work, so we made a deal -- I got a Super Sammie Day on Saturday while he worked, and he got the same on Sunday while I worked. (I'd hoped to finish in time for us to go to a local outdoor concert, but that didn't happen . . .). I know, how 21st Century parenting of us . . . splitting up the weekend to work (boo). We even made the negotiations via blackberry ;o) Anyway, although we both would have preferred family time, we take what we can get, so each of us made the most of our Sammie days while the other worked.

For my Sammie Saturday, I planned to just stay home and play and work with her all day, but after breakfast, decided to walk to the park to look at boats. I took a blanket and toys, and figured Sammie B and I would do her "work" there. Then, as we were walking around the park, and I was showing her boats (and after she tried to say "boat" -- "bo"), and she was enjoying them so much, I saw the water taxi, and decided we'd jump on. I happened to have enough cash, and I'd never been. I figured if she hated it, we'd hop off at the next stop and walk home. Well, she LOVED it, so we road to all the stops -- we were on for about 45 minutes. She stood the entire time, just looking over. We both had a blast! I also taught her the sign for boat, and she was doing it all night . . . We gave her a toy boat we have at home, and we looked back over at her, and she was just holding it, signing "boat." It was truly a perfect Saturday. Sunday was less perfect (I get super bummed when B and Sammie B are playing while I'm working . . . a life-long problem, I can't STAND to miss a party!), but a good weekend!

It was so fun having a "first" with Sammie on Saturday, and experiencing this short little $1 boat ride through her eyes. I even got a picture of both of us, even though I was make-up-less and messy-haired!!! As silly as it sounds, I talked about it the rest of the day, telling B how nice it was (and how much I surprised myself) by doing something so spontaneous and fun for the little Bean!

We can't wait to go again!

[Oh, and for B's Sammie Sunday, they went swimming . . . I could hear her shrieking with joy from the pool as I sat in our home office and worked . . . adding to my "hate to miss a party" problem but happy for B that he was having such a blast with our Bean.]

Tuesday, August 17, 2010

The Human Brain is INCREDIBLE

When I was driving home last night, I heard something on NPR about a story of a woman who had monocular vision due to strabismus until she was in her late 40s and then re-trained her brain to have binolcuar vision . . . which is sort of counter to most expert's thinking on the brain and vision development (most believe binocular vision has to be developed in childhood or is lost forever). I heard the name of the book, and couldn't wait to tell Brian about it. Then, after dinner, we turned on NPR and the full story was on, which is very random b/c whether I admit it or not, I'm more of a Ryan Seacrest radio girl than an NPR one so the fact that TWICE in one day I happened to be listening to NPR and heard this story is incredible enough ;o) Anyway, more to the point . . .

The interview on NPR was with the author of the book 'Fixing My Gaze: a Scientist's Journey into Seeing in Three Dimensions.' Fascinating! The author had been cross-eyed as a child and had three separate surgeries to straighten her eyes. Then through therapy in her late 40s/early 50s taught herself to see in 3-D. Oh, and while she was doing this she was a professor of neurobiology! We were obviously interested because of the relevance to Sam's eyes but you should listen to the interview (or read the book, which we plan to do) because she does a good job of explaining strabismus and how the brain and body adapt to the condition. Not to mention the fact that it's just plain interesting.

The NPR interview (on Fresh Air) can be accessed from the author's website -

So, it was fascinating, and also a good reminder of how malleable (and incredible) the human brain really is. We are told that Sam's binocular vision is fine (and the doctors credit her early surgery with this) but we know her tracking and depth perception is a little off . . . but again, the doctors tell us those pathways will form in time. This story reminded me that we don't have to be in a rush! Sure, we'd like for Sam vision to be perfecto asap, but really, the brain is incredible, and she'll get there (wherever "there" is!). . . in her own time.

Tuesday, August 10, 2010

Fabulous - That's What She'll Be!

Since Sammie B was born, I've realized how very very hard it is to find mom friends to really connect with. We live in a huge city, I work a lot, many of my friends do as well, and when we aren't working, its just hard to find time to "connect" -- I always want to spend my non-work time with Sammie B and B, and there's just so little time left over.

Facebook has provided me with a way to connect with the friends I already had that became mommies . . . even if sometimes, that's just through a few pictures and comments, I feel like I'm getting a glimpse into their lives as mommies, and connecting on that level.

And a friend also introduced me to an online list-serve/forum for local moms, and I've loved that. I've connected with other mom-lawyers on that site, other moms of low-tone kids, etc. through posts, messages, facebook, and play dates. That too has been invaluable. So suddenly, my mom network expanded to women that I didn't really know, at least not in real life.

And as we started delving more and more into the world of PT, OT, etc., I started looking for connections with moms that were in similar boats. And that's how I found several women that I now call "friends" who live in other states, far away, that I likely may never meet in person, but that "get" my experience as a mother more than I think anyone else possibly could. We post questions and commments, we share resources, we whine, we complain, but above all, we support each other.

When I find that being on the board causes me to focus TOO much on the delays and I take a step back or am busy at work and MIA for awhile, they check in on me via facebook, as I do with them (we've all noticed that while its nice to share our stories about PT, etc. on the board, its also nice to see pictures via facebook of each other and our kiddos on a random Saturday, reminding us that there's MUCH MUCH more to our lives than just PT/OT . . . those glimpses into their lives make me smile). They cheer my sweet Bean on and I cheer their kiddos on too. Sammie B's network of cheerleaders is pretty impressive.

So, its no surprise that when I recently posted a question about how I am so sick of hearing "oh I'm sure she'll catch up" as comfort, these women could all relate and had great words of wisdom. [I should mention that many of my "in real life" friends did too].

The thing is, in the beginning of our journey into developmental delays, that's what I needed and wanted to hear, because I needed and wanted to believe MORE THAN ANYTHING that she WOULD catch up. But, lately, those words don't comfort me anymore. I feel like people say it because that's what THEY need. THEY need to believe she'll catch up because that's their "normal," but I would much rather NOT hear that. We don't know if she'll catch up. Sure, her doctors still remain confident that she will, but so what. If she doesn't, her life won't be any less beautiful because of that. And I need MY friends (and all of Sammie B's supporters) to believe that too. To just appreciate her for who she is and not worry so much about what she'll be. She's going to live a beautiful life and so will we for having her in ours.

So anyway, my favorite comment from another mom on my board is worth sharing . . . because its exactly how I feel (it is true AND a tiny bit funny - what's better than support + a giggle?)

I woke up this morning with an answer to the catch up question. "Well, its not a race so "catching up" is not what we worry about. We want her to become who she was meant to be."
Just one other thought, remind your friends and families that our children are not deaf and we are not going to talk about their delays in front of them any more than we are going to ask if their typical daughter is ever going to lose the extra weight or stop dancing like a klutz.

And that is my hope for Sammie B. . . that she will become who she is meant to be, her very best self. And that B and I will open all the right doors for her and do all that we can to enable her to be that best self. Few things in life are certain, but I know for sure, with no doubt, that she is going to be fabulous.

[As I type this, though, I worry that some of my friends/family may read this and worry that they've said the whole "she'll catch up" thing and pissed me off. Not so. As I said, there have been times when that's exactly what I needed to hear. There may be times I still want to hear that. Knowing you believe it helps, I just also have reached a place where I no longer think that MUST be the goal. . . where I don't want that to be treated like its the most important thing, because its just not. That's all. So, keep on believin' it, just join with me in realizing that in the grand scheme of things, "catching up" is an abstract goal, and one that really doesn't matter all that much.]

But its all better now!

While our first two years (almost! eek) as parents has not been an easy journey, we have been so fortunate that Sammie B has not been sick much. (HUGE KNOCK ON WOOD). She had a bout with RSV when she was about 7 months old, but bounced back like a champ and wasn't even hospitalized (as is super common w/ premies and really, all infants, who get RSV). She had roseola last month, but other than being tired and a tad whinier than normal, she again, was a champ. But two weeks ago, our Bean got SICK, and well, it sucked. Honestly, the entire experience was one of mine and B's hardest parenting experiences to date, so I knew I needed to write about it to work through it, or start to . . .

So, on a Thursday night, I was up working (boo) and Sammie B started crying around 11pm. I listened to make sure B calmed her and she went back to sleep, but about 15 minutes later, more crying, so I went upstairs. Poor Bean did this ALL night. She'd cry cry cry, I'd calm her, but she'd go back to sleep for about 15 minutes and then cry cry cry again. I slept (sort of) holding her ALL night in these 15 minute increments. She felt BLAZING hot to us, but our thermometer (which has now been trashed) said she had no fever. Nonetheless, we gave her motrin, but it really seemed to have no effect. The next morning, she was just out of it. Lethargic, not responsive to much of anything, and turned down her milk (which has NEVER EVER happened). I got worried, really worried (read: panicked) and we called the doctor, who said she probably had an ear infection and to bring her in. We took her to the doctor, completely one hundred percent confident it was, and not too worried. But the little Bean was oh so sad. This is us waiting on the doctor to call us back:

And then, the doctor examined her, and couldn't find anything wrong (though she did have a fever, even though we were post-motrin, which is why we knew our thermometer was broken). But Sammie B was still just miserable and crying, so the doctor sent us to the ER for a stomach ultrasound, thinking that maybe she had this super common, no-big-deal thing where the small intestine gets caught in the large intestine (fixed by a mere enema). Her symptoms fit (cyclical crying, lethargy, fever) so off to the ER we went. Still not panicking because the doctor didn't seem to be.

Fortunately, we live in a city with GREAT hospitals, and we went to one of them, but we had SUCH a horrible ER experience that I honestly think B and I are both scarred for life (Sammie B no doubt has already forgotten!). First, they were super nice for the stomach ultrasound and let me hold her for the whole thing . . . I just laid with her on the table, cuddling her while they did the ultrasound, and she actually fell asleep! But the ultrasound was normal, and she was still refusing liquids and totally lethargic, so the ER doctor wanted to put her on an IV. Next thing we know, someone from admissions is coming to have us sign the admission paperwork (yet no one had told us she was being admitted). Then, the nurse came to put the IV in . . . TWO nurses, and they wrapped her up in a burrito-like straightjacket and had us hold her down and BOTH tried to get an IV in and failed. And one of those bitches even dug around in her vein after she poked her, which always always pisses me off. I have tiny veins, so I've been stuck TONS, and its ALWAYS better to stick again than dig!! So, even though Bean was hysterical, and I was slowly losing it, I VERY VERY nicely said, "I know that you are both really good at your jobs, but since she's so little, can we please get a PICU or NICU nurse to put the IV in?"

In walks another nurse. I said, "are you from the NICU?" She said, "I used to work in the NICU." (Probably before they got rid of her for having no personality). And so we went through the above AGAIN. Wrap her up, hold her down, stick her. This nurse got the IV in and we breathed a sigh of relief. Then I decided to walk out and call my mom with an update. When I walk out, I hear the first nurse that had tried to stick Sam talking to another nurse saying she couldn't "stick her because it was like she had floppy baby syndrome" and then she went on to remark "at her age!" I SPUN around and said, "are you talking about my daughter?" She said "yes," and that's when I lost it. Mama bear.

So, I said, "She is floppy. It's called hypotonia - low-tone, and its unfortunate that as a nurse you think that's something to stand out here and giggle about. Send the doctor in our room immediately, and we want another nurse." Just NOT what I needed in that moment. NEVER. Flippant little bitch. (I MAY have used those words when talking to the nursing supervisor later, though I truly did try to remain diplomatic).

So, then I go back into our room and around that time, someone came to hook up the IV fluid itself, and Sam LOST HER SHIT. Started screaming like nothing she's ever done before. B asked the tech, "is it hurting her?" And he said, "no," and walks out. So both of us are trying to comfort her . . . she's literally writhing in our arms, screaming, and we don't know what to do. Then, B looks at her hand and says, "why is her hand purple?" I go running for the nurse that had hooked it up (not the flippant bitch) and said, "her hand is purple." She comes running and sure enough, its infiltrated, and poor Bean's hand/arm, everything is swollen from the fluids. The second that IV was out, she literally melted against me and fell asleep.

The doctor came to apologize, the nursing supervisor apologized, we got a new nurse, and B and I refused to let anyone else touch the Bean until we got up to the pediatric floor. Finally we got there, and someone got an IV in the poor kid (after another failed attempt). All in all our sweet girl was poked FIVE times for one IV. B and I were both total wrecks . . .

We spent the next 13 hours just laying with our poor babe, who was oh so exhausted.

All the doctors we spoke with guessed it was just a virus, and that she just needed fluids and she'd be fine, but they ran urine tests, blood tests, etc. My mom (Gigi!) was fortunately already coming for a visit the next day, so her timing was perfect. I needed MY MOM almost as much I think as Sammie B needed me!

Anyway, the next day the doctors concluded it was just a virus (all tests came back normal), and declared we could go home after just one more night as long as Sammie B was eating. . . she ate a little bit that day, but not much, and finally by evening, was starting to sit and play a little (with Gigi).

Still no babbling or giggles though, and I missed her voice. The next morning, she ate like a champ (finally) and we were discharged. As we were walking to the elevator, she laughed. Laughed. Like, "I scared you, didn't I?"

When we got home, she and I CRASHED for a 4-hour nap. I think she was just exhausted. . . hospitals are NOT restful places. Poor bean was poked off and on all night and day . . . temperature checks, blood pressure, etc. etc. (I worry so much that this experience is going to give her a fear of the white coats . . . and to this point, she's always been such a calm wonderful patient :o()

And after that nap, she HOUSED two pieces of pizza and a brownie. The BEAN was BACK.

B and I remain a bit changed in ways that are hard to articulate. That nurse's flippant little comment; the monitors that reminded us of our time in the NICU (in those very walls); having to HOLD her down for the IVs when she's now so cognitively aware, with her just LOOKING at us, clawing the table trying to GET to us, and screaming with eyes like "help me Mama! Why are you letting them do this?!" . . . Yes, we will forever remember this experience, but I'm soothed by the fact that she won't . . . and its behind us. And we made it. The three of us. And Sammie B bounced back, as she does with everything in her life, like a champ.