Yo soy La Lay

adventures in family, faith, and Down syndrome

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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Progress – Month 2

All of Tessa’s therapies are in full swing now, so here is an update on where she is and what we’re working on:

Developmental Therapy
We are working on bonding as a family and smiling. I think the bonding is going well… we kind of like her… a lot. Plus, she’s a good sleeper, which definitely helps her cause. 😉 Tessa is doing some social smiling, though not a ton. More than anything, we would like Tessa to smile at Ellie. It will come… it may come faster if Ellie would stop undressing her like a doll every time I turn around.

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Physical Therapy
We are still hearing that Tessa is so strong!! The nurses called her “the swimmer” in the NICU because her arms and legs were always flailing. Now we’re trying to help her coordinate those movements a little more. It sounds odd, but she doesn’t know that her arms and legs are attached to her, so we try to encourage her to bring those parts in toward the body, like this:

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Rather than her preferred relaxed position:

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We do a lot of tummy time and also work on supporting her in a sitting position to gain more control of her neck. When holding her, we keep her legs from going “frog legged” as often as we can. Thankfully, she is loving sitting upright by Mom and Dad’s shoulders, so she gets a good workout in that way! She also throws her head back and extends her back a lot. They call it “extension” and while it is building strength, it’s not so great for her posture and physical development long-term. Again, trying to get her to bring everything midline (center) will help. We usually lay her on the floor between two rolled towels to help with this.

Speech Therapy
While Tessa is still eating laying down, we have much less gulping than before and she hasn’t choked on her food in quite some time. John went rogue and tried to feed her sitting upright, but she just wasn’t ready. Patience is very challenging, but I know she won’t eat on her side forever!! On a positive note, Tessa has found her hands and likes to chew on her thumb. I realize that this sounds strange, but different textures in and near the mouth are important! Also, to stimulate muscles, when we clean Tessa’s face, we always wipe toward the lips rather than away. Tummy time and sitting upright are helping her build up strength to eat in a typical manner. It’s so amazing how everything is related!

We won’t have an official re-evaluation until Tessa is 6 months and I’m curious to see where she is at by then. Babies change so much in their first year! This week, I packed away the newborn clothes (they lasted a lot longer with Tessa than they did with Ellie!). It goes so fast.

Tessa “stuck” in her towels. She doesn’t like it so much, but it’s good for her. 🙂

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