Yo soy La Lay

adventures in family, faith, and Down syndrome

5 months

Tessa has been five months for a little over a week.  I have not been putting off this update, I’ve have just been waiting for some calm so that I could get all the information in one post.

And then I realized that there is no calm and decided to write it anyway.

At four months, we decided to schedule her ear tube surgery and bronchoscopy.  Then, as is well documented on this blog, we had the pneumonia hospital visit and subsequent recovery.  Now, we wait.  Surgery is scheduled for June 5th, which puts it after school gets out (no time without pay, yay) and during the time that I was originally scheduled to travel to Costa Rica.  Clearly, God was keeping me back for a reason.

Here is where we are at in terms of therapy:

Physical Therapy

Tessa is a rock star on her tummy.  She is right at her age with her “tummy skills.”  She is still wearing kinesio tape to help activate her muscles.  I still think the idea of tape on the belly is kind of bizarre, but we’re going with it.  She’s slightly more delayed with her sitting skills (about a month).  We have had the chance to break out the Bumbo seat and while she can’t last it in for a long period of time, she does kind of like to see the world from a new perspective.

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The therapist has recommended using cabinet liner to help stabilize her when she sits in the Bumbo or when we do “couch sitting,” which is when she sits using the corner of a couch for support.  Creative, cheap, useful… It works.

Tessa’s new strange habit is this loud groaning sound that she makes regularly while tensing up all of her muscles.  We’re glad that she’s practicing using the “right” muscles (the ones that flex), but the groan kind of freaks people out.  My theory is that she just likes to hear her own voice (just like her mother).

Speech Therapy

Upright feeding is going great, hurray!!  We are at a point where anyone who wants to can give her a bottle and that makes me a very happy momma.  The next step is building up her core and mouth muscles to prep for solids.  We hope to start with some cereals this summer, but need to make sure that her body is ready for the different textures.  We do mouth stretches with her and use a little tool that looks like of like a solid straw with ridges on it to massage her gums and tongue.  I’m happy with her progress here, but curious to see if the bronchoscopy will reveal anything interesting going on inside her throat.

Here, you can see how happy Tessa is to have to sit at the dinner table, but not get any cupcakes:

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Developmental Therapy

So we’re seeing some more pronounced delays here, but the victory is that progress is happening.  Tessa loves people.  All people.  All faces.  All toys with faces.  But things without faces?  Not so much.  She is reaching, which is good, but we need to get her hands to open up a little more.  She can’t interact until she gets motivated to grab at things and explore, so the new development in developmental therapy is that it’s time to call in occupational therapy.

Sorry, that was a lot of terms.

Basically, Tessa’s occupation is to play, so we need to make sure she can do that effectively.  We are going to get her started with some occupational therapy to help this progress… because while Ellie is a great example for Tessa, she does a lot more toy-swiping than toy-giving.

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(this is the best of my failed attempt at a cute picture of these three)

Overall, we are joyful at the growth in both of our girls, prayerfully optimistic that surgery will go well, and ecstatic that our summer is finally here.  Just three more days of class for me, another week for John and we will have lots of this…

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and this…

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and hopefully not so much of this… but I had to send some love to my husband (and dad) for fixing my car…

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Welcome back summer, we’ve missed you.

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How Daddy Got His Fish Back

Neither John or I are very into swimming.  This is why we were hesitantly delighted to find that Ellie adored the water.  She would never learn to swim from either of her parents, but lessons!  There could be lessons!  The girl with two left feet could be an athlete!  And in high school, the meets would be inside where I wouldn’t have to be cold or stand in the rain!  And then she could be the next Missy Franklin!  Olympics, here we come!

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All of our hopes and dreams came crashing down about three months ago when Ellie decided that she loathed taking baths.  Loathed isn’t even a strong enough word.  Even hearing the word “bath” sent her into a terrible sobbing, screaming fit.  For awhile, I just forced it.  She’ll get over it, right?  Suck it up, kid.  No tears in this house.

It was (very) unsuccessful.

So, just like any rational parent, I decided to consult my dear friend, Dr. Google.

And then I started reading a lot of psychologists who said that the worst thing you can do is to forge through and make the kid “suck it up.”  Oops.  Another parenting fail.  But when your child has hair down to their butt, bathing really isn’t an option.  So I tried to make it more “fun!”  I tried getting her into the big whirlpool tub with the jets (major, MAJOR mistake).  We tried putting on swim suits and getting in with her. We tried sitting in the tub and letting her bathe us.  We tried letting her take a bath in Tessa’s infant tub (now that was ridiculous).  There were toys, so many toys.  Old turtle rattles, new little boats picked out just for tub time, tub crayons, squirty little octopuses… those made the fits worse.  She feared the drain and that all of us were going down into it.

This has not been the most joyful phase of my parenting career.

I write to you today with a new perspective, having traveled back from the Hell of Bathphobia.  Here’s how:

1.  We invested in some Crayola Color Drops AKA: Magic Protector Pills (Some parents frown upon the idea of imaginary sprays and potions.  Desperation will change that perspective).  Somehow, choosing the color of the bath made it less scary.  We had just read Pinkalicious, so in a pink bath, we pretended to be the main character.  I was still in the tub with her, but there were no tears.

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2. To get me out of the tub, we started making lists.  I have no idea where this idea came from, but suddenly, a list made the whole situation bearable.  Just before the bath, we write out all the steps together:

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Then, while the bath is going on, we cross them out.

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We practice numbers, we are cheerful, I am not in the tub.  It is glorious.

Don’t ask me why this works for her.  I think it might be because she knows that she will survive The Drain because there is a next step.  All I know is that if you find yourself in the middle of a torturous tub tantrum, a list might be your key to freedom.  At the very least, it’s a tool to try.

The Fish is back, just in time for summer.  And in plenty of time to train for the 2028 Olympics.  I can already smell the gold…

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Imagination

Ellie lives in her own little world and we are just characters in the game. Lord help you if you wake her up from her occasional nap and call her Dora on a day when she is actually Doc McStuffins. I found myself in that situation late this afternoon.

It wasn’t pretty.

With no TV to distract us these days and John working late coaching track, Tessa and I have been at the mercy of Ellie’s imaginary play. Today, we were Doc McStuffins. Or, to be more specific, Ellie was Doc, Tessa was Stuffy (a goofy blue dinosaur), and I was Hallie (a chubby purple hippo with a southern accent. Lucky me!).

http://youtu.be/COhezyZhcOE

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Tessa isn’t quite sure what just happened to her, but she’s glad it’s over. 🙂 (These last two pics were just too cute not to post!)

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Special Needs Mom Law #2

So I guess I fit into the category of a Special Needs Mom now, though I’m not exactly sure what that means.  So much of Tessa’s care seems similar to Ellie’s.  Slower, perhaps, but the same.  

Nevermind that whole week we just spent in the PICU, of course.

Still, after I told you all about my fear of Mom Jeans, I’m trying to put some goals in writing to maintain…  maintain what?  I don’t know.  But as my blog friend Jill (and fellow Ds momma) put it, we are trying to avoid being those unfashionably fiery and crazy Special Needs Moms in our nightmares.  I’m pretty sure that fiery and crazy is gonna happen sometimes, but we plan to do it without looking and feeling like a wreck. 🙂

My Special Needs Mom Law #1 is “Put your own oxygen mask on first.”  Thanks to Beth, our NICU social worker for that one.  No mom jeans allowed.  No laundry on a Friday Night unless we’re going on vacation the next day.  My Law #2 is “Celebrate the typical children, too.”

My Ellie Bean is bright and fun and fabulous… and she does some really awesome things!  I fear minimizing her accomplishments because I know that Tessa’s won’t come as easily.  But I need her to feel important, special, and loved just as much as her sister.  And so I present to you Ellie’s milestone of the week:

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That’s her name!!  She can write her name!!  We had been playing a lot with the Writing Wizard iPhone app, but I had not seen her skills transferred to paper.  My mom showed me that she could write the letters with a marker last week, but I really needed to see it for myself.  So we pulled out her little whiteboard this morning and she showed me.  I’m so proud.  🙂

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Normalcy?? I hope not.

Well, we thoroughly sucked at this week.

This was the first week since before Tessa that both John and I have been working.  I’m sitting at my kitchen table, surveying the disaster that has been created by the tornado of our life.  Strewn across the surface of our table are the remnants of not one, not two, but three McDonalds Happy Meals… there are empty Chinese cartons, a Chili’s To Go bag, a couple of squeaky styrofoam boxes from our favorite sushi restaurant…  and I haven’t touched my weight watchers app in seven days (thanks for sending me the lovely reminders, Weight Watchers App.  No, I haven’t tracked my weight lately, I know.  I don’t even want to know where that number stands after this week).

I often measure the stress level of our week by the number of meals we eat as a family, at our table.  We shoot for five.  This week, we were at one.  I think.  Then again, that may have been last week.   

After a weekend full of way-past-your-bedtime events, Ellie was in a funk.  There were lots of tears and sulking by the door to our garage, waiting for Daddy to come home to save her from Lord knows what.  Me, I guess.  One day, she spent 45 minutes carrying on about how she had no toys anywhere and how she wasn’t going to play ever again.  One night, there was vomit.  That was awesome.

If you are an unmarried reader… my unsolicited advice to you is that you find the partner who will laugh through the 1 AM, 2 AM, 3 AM vomiting toddler/hungry infant extravaganza and will thank you for being awake with him (as if there were really a choice).

There were meetings that ran long, a  list of school events to supervise, two therapy sessions, several hours of crying toddler to survive, a house to clean…

I actually broke down and called for an estimate on how much it would cost to have my house cleaned by professionals.  Sooooo not in the budget.  

In any case, we have learned the importance this week of my monthly meal plan (which was not in place this week… hence, the struggle… or so I tell myself) and our shared iPhone calendar.  While I don’t think that we will ever not be busy, we will get better at the adjustment to two in the working world, two in daycare.

Right?

Before I forget to record them, there were some fabulous bright spots to our week.  And I mean fabulous.

1. Tessa took almost all of her feedings today in an upright position.  HOLY Guacamole!!!!  Yes, yes, yes, THIS is what we have been praying for most.  

2. Ellie took a bath with zero tears.  I haven’t written much about this (it’s a “coming soon” post), but suffice it to say that bathtime has been a terrible experience for quite some time and we are finally getting our little fish back.

3. Tessa figured out how to roll from back to belly today.  She’s been on her side and aaaaaaalmost over for a little bit, but she finally got her shoulder to cooperate.  I’m SO proud of her… and SO terrified to walk into her room and see her sleeping on her belly.  I’m not ready for that!

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On Being Two and a Half

Here is a conversation that I literally just had in the car with Ellie:

Ellie:  Oh man, I lost my booger.

Me:  What?  What booger?

Ellie: My booger from my nose.

Me: (silently pray that it’s gone, long gone… or better yet, that it was just imaginary) umm…. How did you get a booger?

Ellie: Oh I got it.  From my nose.  (pause)  It’s not on my hand.  And it’s not on this hand either. (pause, then squeal)  HERE IT IS.  On my cheek!  I have my booger!!  My stupid booger.  Mom, do you know the “stupid” word?

Me: (in my head: oh yes, I know it well.  As a matter of fact, I probably taught it to you.  Crap, she pays way too much attention… I need to stop gossiping in front of her.)  Umm…..

Ellie:  It means you die.  And you have a stinky shirt and you don’t take a bath.  Can we go to Mimi’s house? 

I will miss two-and-a-half someday.

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The State of Our Union, 1st Quarter 2014

It’s hard to believe that 2014 is (almost) a quarter of the way finished. Spring is taking its sweet time arriving in our area. It’s been a rough winter!

And so an update on the family:

John and I

No one really wants to know about the adults… but it’s 7 AM on a Saturday morning and we are both showered, dressed, and ready to start the day… and yet, our small bosses children are sleeping the morning away.  John is clicking away at his laptop, working on yet another grad school project and I’m sitting here with my ear pressed up to the baby monitor, desperately hoping to catch the moment when Ellie wakes up and realizes that Tessa spent the night in their room with her for the first time.  Tessa has finally graduated from her pack n’ play-in-the-closet set up to her crib… but I digress.  I’m talking about the adults, right?  John’s at the point in his grad school that I was exactly one year ago.  He’s tired (I’M tired) and feels like there is no end in sight.  He’ll be finished in December and perhaps then we’ll have just a tiny bit of an ease in the chaos of life.  Of course then I’ll probably get the itch to go back to school or I’ll take on some project that I really don’t have time for and we’ll be back to crazy.  I think we kind of like it that way anyway.  So John is grad-schooling and coaching and teaching…. and me?  I’m kind of jealous.  I just really need to go back to work.

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Ellie

Our crazy (CRAZY) child has had another explosion of language growth.  She’s already very verbal for her age, but now she’s connecting ideas and feelings, asking questions that are complex and interesting, and singing songs that are incredibly inappropriate for a two-and-a-half year old (totally my fault…….).  She’s still a total klutz.  My mom tries to tell me that she’s just too busy to really be careful where she is walking, but I’m fairly certain that she’s just the kind of athlete that I was…. not an athlete at all.  We all have our strengths and weaknesses.  She and I went out for a Mommy/Ellie date this week at Red Robin like we used to do before Tessa was born.  We even got dessert.  🙂

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Tessa

And then there is the peanut.  She’s just about THREE months now.  Suddenly, she’s very smiley and engaging.  She’s making some other noises than crying.  Her first noise was an “are you kidding me??” yelp.  Now there are happy coos as well.  Her physical progress is… progressing.  In PT, we’re using some kinesio tape on her belly to help her build up strength in her core.  She’s not able to lift her head up as well when she has it on, but I’ve been assured that she’s not regressing, she just has to re-learn to lift it using the correct muscles and posture.  She also gets to start wearing “hip hugger” pants to keep her frog legs from turning into a long-term problem.  We’ll see the developmental therapist next week, but I’m sure she will be happy to know that Tessa is smiling much more, maintaining eye contact (mostly with me), and when I move out of her vision, she looks for me.  Small victories.  And then there is speech.  No progress to report here with Tessa.  She’s still feeding in the side-lying position and doing well with that.  I’m also more comfortable with it – and getting more comfortable letting other people feed her in that position.  We were working on a transition to more upright, but she has had a cold for a few days and it’s hard enough to get the food in with a stuffy nose that we’re waiting until that clears up to experiment.  For now, the focus is on holding her differently so that she gets used to being in a more upright position.  We’re still doing some mouth-stimulating and working on the pacifier (though she has found her thumb and really likes it.  

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I made the mistake the other day of pulling out Ellie’s baby book and looking at what she was doing at 2-3 months.  Well,  I don’t know if it was a mistake, but it certainly hit me like a ton of bricks that Tessa is just going to take longer to do what her sister could.  I’m wondering what this little girl is going to be like when she’s bigger!!  Who will she be?  What will she sound like?  What will she do?  Don’t we ask those questions about all of our children??  I’ve been forcing my way through the book Eat, Pray, Love for months (I have no idea why it’s taking me so long) and she wrote about these phrases that you chant through meditation to center yourself.  I don’t meditate (do people really have time to do that??), but I do have my own phrase running through my head when I get frustrated: she will do it, in her own time.  Sometimes I need to say it a lot, other times not at all.  But it’s a reminder to me that we’ll get there.  In her time.

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Sickie

I need to write an update on Tessa, but truth be told, I haven’t spent a lot of time with her in the past couple of days.  Instead, I’ve taken care of this little sickie:

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Ellie doesn’t get sick often.  As a matter of fact, this is the first time she’s been sick at all since she was about 9 months old!!!  However, when she does come down with something, she goes all out.  She’s just like her daddy in this way.  The throwing up, the chills, the crying… her fevers are always in the mid-to-upper 103 degree range and she just acts miserable (and I’m sure she really is!).  New to this illness was Ellie’s ability to use words to tell us all about her pain and discomfort.  She had lots to say!!  So. Much. Whining.  My particular favorite was an exchange that we had toward the end of her sickness, when she was absolutely desperate to show some love to Tessa:

Ellie:  Can I please kiss Tessa now?!

Me: Nope, sorry.  We have to wait until you are alllllll better.

Ellie:  Ohhhhh.  Because I throwed up?

Me:  Yep.

Ellie:  And because I have worms?

I can assure you, there were no worms, but rather, germs.  Thankfully, it only took a couple of days for Ellie to return to normal.  The “tummy bake” and “worms” have left, John and Tessa are allowed out of quarantine, and only one of four family members was afflicted with this lovely bug.

(It’s worth noting that Ellie learned VERY quickly that she will be pampered when sick.  After bursting through the door yesterday afternoon, laughing and singing, she was asked to pick up some toys.  She proceeded to tell us that she really “needed a rest,” then laid down on the couch, closed her eyes, and asked for some sprite for her tummy bake.  Yeah, right.)

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