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 just.an.ear.infection, 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.

Mantra

May there be more days where I notice every single one of the "cans" and not worry so much about the "cant's."

And may the "cant's" slowly become "cans."

My Bean, oh how I learn from you.



[Sammie B's new favorite toy at PT - the play kitchen . . . pretend play! A new phase!! I knew she didn't learn "kitchen play" from ME. . . until I realized her go-to in the kitchen was the microwave!]

Baby You Amaze Me!

[Picture from our trip to Tahoe]

I'm pretty sure I'm not going to be able to convey in words what I'm feeling right now . . . but I'm going to give it my best.

Tonight as I watched Sammie B playing with her speech therapist (oh yes, our week now includes 2x ST, 2x PT, 1x OT, and 1 swim lesson!), I was just overwhelmed with LOVE for her. I don't think its possible to fall any MORE in love with her than I already am, but lately, when I sit back and watch her interact with others, I just feel so amazed by her. It is difficult to put into words really, but I think its just sitting there watching her interact, seeing her follow directions, pick what (and how) she wants to play, watching her show affection and communicate what she wants and laugh at people's jokes, etc. . . watching her BE her OWN little person. It is amazing really. I felt this way when we went on our vacation (which I'll eventually post pictures from) and I watched her with her older cousins. She was clearly MADLY in love with them, and stoked anytime she got to be around them. And as I watched her with them (and them with her) I just felt overwhelmed with love and just utterly amazed by her. She's a little person. My favorite little person. My Sammie B.

Tonight, I sat quietly and just watched as she and her therapist played with Mr. Potato Head. Other moms whose kids do various therapies will probably relate to this experience (which I'm having a hard time putting into words), but as the therapist told her to do each thing (like find Mr. Potato Head's arm), I couldn't help but feel anxious. It is that feeling that your child is being evaluated, and wanting them to get it right. After all the evaluating we've been through, its hard to escape that knawing concern in these moments. But tonight, as she often does, Sam blew me away. She did things I didn't even KNOW she could do. Like when her therapist asked her to find Mr. Potato Head's arm in the bucket of potato head parts,(she knows HER arm, and doll's arms, etc., but I didn't know she'd be able to pick a random arm -- without a body -- out of a bucket of miscellaneous parts), she reached in and touched Mr. Potato Head's hair, picked it up (and I of course thought she thought THAT was the arm) and then she tossed that hair off to the side because TADA - the arm was right under that hair. She knew it. Amazed.

And that speech therapy session (only her third) was just overall GREAT. She even mimicked a bunch of the sounds the speech therapist was trying to get her to do, which is great . . . Sam always babbles a ton with us at home, but rarely with others. She's very quiet outside of her little comfort zone of family. But tonight, she even said "buhbuh" for bubbles! And last night, we got "bah" for ball . . . and she was SO proud of herself. Now she says "bah" everytime we pick up her ball.

Swimming also continues to go fabulously well - we had a lesson today (busy day!) and she was just kicking up a storm!!! She actually seems to understand that kicking her legs will propel her forward. And the movement in the pool is undoubtedly helping her build strength. Brian and I have both noticed she's using her lower body more -- like she's suddenly becoming more aware that she can manipulate those legs of hers too -- and we think that's likely coming from the pool time.

Sam is also signing much more. We didn't do sign language with her until recently -- didn't make sense to early on when we weren't so sure about her vision, and then with everything else in our lives, we just didn't focus on it, but lately, all of her therapists were encouraging us to sign with her, and we've been thrilled and amazed. She picks them up so quickly! She now signs "more," "all done," "milk," "water," "love," and "want." I feel like those signs have opened up the pathways of communication for us so beautifully, and definitely help Sammie B with her frustration . . . we are now working on "help," though fine-motor wise, that one is a bit harder for her.

Our favorite newest Sammie B thing is that when she is pooping, and is done, she signs "all done." Sometimes, when we think she's done, we say, "are you all done pooping?" and she'll sign "more." And, she's always accurate :o) Pretty funny! Sammie may be a long way from potty training, because of her motor skills, but the awareness of her functions is clearly there!!!

Our week is filled with therapies, and Sammie B's life is filled with more "work" than any toddler's should be, but its all just part of her story. And today's chapter was a good one.

Sammie B, you amaze your mama. I'm lucky to be yours.

Promise Promise

Every now and then, no matter how optimistic I am, or how "okay" I am with our "new normal," the fear creeps back in. The uncertainty about the future. The worry. The questions. And then this little girl does something to remind me to sit tight, she's in control, not me.

Things are not always easy for us. Certain things are not coming easily to Sammie B and I wish they would, but this is her story. Her story will include the occasional PT session where she doesn't even want to stand up and cries the entire time -- those sessions will make my heart hurt and make me wish I had a magic wand to wave and make it all easier for her. But, there will also be magical sessions (many of them) that make my heart soar.




And, even though I don't have a magic wand OR a crystal ball, and I don't know what the future holds, I do know that this little girl has a whole lot of promise within . . . and that someday, these few assisted steps will turn into many many unassisted ones. And I though I'm eager for it to happen, I know I must wait. She has the rest of her life to walk. I've always believed in my heart that Sammie B WILL walk. I know she can. And, when I saw this video of her at PT taking her first real "steps," I cried. As did her daddy. She can do it, and she will. In her own time.

Sometimes, I'm afraid to speak of these hopes out loud, afraid I'll somehow jinx myself or us . . . but this video is too good NOT to share. This video was from her last PT session before we left for vacation. After two weeks off, Friday's session was not her best . . . Sammie B was NOT ready to be back at "work" and she let us know it! I couldn't help but feel disappointed that we didn't have another huge moment like the one in this video, but the PT told me, "we KNOW now that 'walking' is part of her motor memory. It's there, even if she won't attempt it again for months . . . its there." She said she's had kids that will do a skill and then refuse to do it again for 6 months and then just suddenly do it like they've been doing it their whole lives. Our journey is not an easy journey, but Sammie B is a complex little girl, and I am trying to be patient, and I truly truly am so proud of the little worker bee that she is and the progress she's making. Sweet Bee!

Because Blog Entries Are Just Better With Photographs

Damn me. Although I'm happy no one was hurt (and even more so that Sammie B wasn't with me), I still wish, of course, that I'd NOT banged up my darn car and that I didn't have to make an insurance claim (which will undoubtedly raise my premiums). These things always happen at the worst times, right?!! Like after having to spend thousands on home repairs because of rain, rain, rain and a stupid uncooperative HOA we are still fighting with for reimbursement? And after having to pay hospital bills for a certain someone's bout with collitis? And just after we meet with a financial planner like responsible adults planning for our future? Said financial planner will be less proud at our next meeting when we tell him what happened to that emergency fund we were so stinkin' proud of . . . Grrrrrrrrr.

Her car:



My car:



Damn me.

Dear Luck,

Please turn around. We had a fabulous vacation last week (which I'll blog about and post pictures from soon) but apparently this week, some bad luck has decided to douse my post-vacation glow. First, Sammie B started running a fever on Monday. No other real symptoms, just a little tired and whiny, but after missing a week of therapy for vacation (which I had avoided until this point, we always took weekend trips to try not to miss therapy but then I figured EVERYONE needs a break, even little Beans, so we planned a week-long trip and were planning to cram extra therapy sessions in this week), we had to cancel much of her sessions this week as well. May be silly and overly worrisome of me, but I don't like doing that. She's been doing so well in therapy, and I worry that a break, especially an almost 2-week long one, will somehow set us back. But, such is life.

On top of the fever [which her pediatrician thinks is roseola, so now we just wait on a rash], I had a minor accident on the way to work this morning. Per my usual, I was rushing, and I made a dumb move and got slammed into by a mini-van who was probably going too fast but did indeed have the right-of-way. So, rather than making it to work EARLY like I'd promised I would, I got towed to a garage and am now at home waiting on Brian to get home so we can go pick up a rental car, and I'll likely be up late tonight finishing the work I'd hoped to do today. Good thing for insurance and remote access.

So, LUCK, turnaround now. Thanks.

[More later on the good vacation pictures, the deets on how therapy was going pre-vacation, and how post-trial work has been!]