Yo soy La Lay

adventures in family, faith, and Down syndrome

November, in a nutshell

I cannot believe that we are almost to the end of John’s Master’s Degree program. He and I embarked on our journey of earning our degrees when Ellie was 6 months old. I finished 4 days before Tessa was born. In less than a week, John will join the club.  He tells me that, at 67 pages, he is done writing and that all he has left are some citations (which, at this point, I’d really like to just do for him so that it can just be done, but of course, I won’t, because playing with Tessa and Ellie is more fun than researching APA Style). Craziness (and crankiness) hit their highest point last week and we’re coasting into the finish line now… Here are some pictures of life lately…

Did I post this yet? I can’t remember, but it’s worth repeating anyway..

IMG_6659.JPG Trying to stay warm in our most recent snap of cold weather: IMG_6677.JPG     Tessa loves to play “sooooo big!” IMG_6706.JPG   We celebrated my nephew’s second birthday… this is my sister, sister-in-law, and I with our kiddos… IMG_6712.JPG   Sticking out our tongues in solidarity with Tessa 🙂 IMG_6766.JPG   So serious today…  IMG_6762.JPG   A little happier in this one.  🙂 IMG_6734.JPG   The media center at my school is having a “Shelfie” contest… Here’s our entry… IMG_6759.JPG   We put up our Christmas decorations a little early (sorry, Mom) and Ellie decided that Baby Jesus needed a check-up from our dear friend Doc McStuffins. IMG_6771.JPG   Holding her own bottle is super hard work!! IMG_6776.JPG  Sister love. ❤

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So where’s my magnet?

Oh Ellie Bean, you sure can keep your momma on her toes.

So, we’re working on thank you notes for all of those who donated to our cause when Team Tessa ran in the Rock n’ Roll half back in in July.  We decided to order some ridiculously cute magnets with Tessa on them to send our supporters.

Ellie takes a keen interest in helping me do most anything around the house, especially things that she really can’t easily help with.  Like writing thank you notes….  There’s no clear way for her to help write letters to our family and friends, but after more whining than I could handle a little consideration, I decided that she could put the magnets into the envelopes.

At first, she was totally enthralled with these little pictures of her baby sister.  But, as her interest in envelope-stuffing quickly waned, she decided to spread all fifty out across the table.  “Look at all these cute little Tessas!!” she squealed, lining them all up in neat little rows.  Until….

Cue dramatic music.

“So, Momma?  Where is my magnet?”

Not upset, not mad, not annoyed.  Just confused.  And my brain just started to race…  What to say, what to say?

We have made a decision that there isn’t a need for a sit-down conversation with Ellie about her sister’s genetic makeup.  She’s a smart cookie, she hears us talking.  We read her 47 Strings, she hears the words “Down syndrome,” and it’s just a part of our life.  She doesn’t know what the difference is, or how it will change all of our lives, but she knows.  So how do you explain this cause that we’re connected to, without diminishing the value of the child without a cause?

“Well Ellie, do you remember when we all wore our Team Tessa shirts and watched Daddy run a race?”

“Oh, yeah.  Well, I choose this one.  This one is mine.”  (picks up a Tessa magnet and hops down from the chair)

And she walked away.

Oooooooookay.   So my freak-out was unwarranted… this time.

I don’t worry about Ellie getting lost in the shuffle of having a sister with extra needs.  Believe me, she makes herself the star of her universe with no problem.  As we continue on our journey of this kind of “parenting on steroids,” there will be lots of tough conversations.  Perhaps Tessa, too, will have “what about me?” questions.

Perhaps?  Who am I kidding?  Of course she will!  I’ve never subscribed to the “equal is fair” philosophy.  I know that each kid will require her own special type of parenting, but explaining any of that to the other is… tricky.  Good thing I’m going to get lots of practice.

And now, cuteness…. (which is, somewhat ironically, pretty Tessa-heavy this time.)

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This is her “if you think I’m done eating my food, you’ve got another thing coming” face:

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Reacting Appropriately

And here is the difference that Down syndrome makes:

Belly sleeping must be something genetic.  From me to Ellie and now Tessa… we love it.  As Ellie has grown, she has embraced more of a “pass out sprawled as awkwardly as possible across the entire bed” approach to sleeping.  However, I still remember finding her sweet little diapered butt sticking up sky-high in the crib when she was an infant.  There are pictures, gobs of pictures, washed out in the terrible flash of an iPhone camera.  It was just darling.

(On a side note: how did we function before digital cameras?)

Tessa, too, loves the comfort of belly-sleeping.  But finding her with her knees tucked under her butt, rather than sprawled flat on the mattress, gives me a markedly different reaction.

It’s monumental.

It’s me rejoicing – she can! She can!! She can bring her knees up under her body.  She did it!!  The practice is working!  Miss Kate and Miss Rachel (OT and PT) will be so proud!  I’m so proud!!

Every milestone is a rockin’ celebration.  I don’t even get pictures of this stuff because I’m too excited to consider a camera.  Yesterday, Tessa found herself in the mirror during her bath.  I don’t have a clue when Ellie first stumbled upon her reflection, but yesterday, I sat and stared in awe while our little peanut shyly smiled at herself.

Monumental.

This is the challenge now, when there is a child born with obstacles… reacting appropriately to the successes of others.  Everything that other kids just kind of figure out takes her so much more.  And so commiserating when the momma of a typical child impatiently wonders when her child will be able to XYZ… it’s hard for me, okay?  It is.  It just is.

And now, cuteness:

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The State of Our Union: July, 2014

Midway through 2014…

What?

Seriously, when did that happen?  Our lazy days of summer have been very, very good to us.  With the Fourth of July holiday now over, I can already feel the itch to get back to school.  Crazy as I know it is, I do miss the routine of our school year.

But not enough to rush back in already.  🙂

Here’s an update on how we’re all doing… skip to the end if you’re only interested in our most-interesting family members (meaning: the kids.  I’m not offended if you don’t care much about John and I.  🙂 )

John and I

We’re coming up on our five-year wedding anniversary (this Friday!).  As we have spent every one of our anniversaries in the car and this year will be no different, on kind of a whim, we went out to celebrate last week.  Hiking in a forest preserve, beers at a local brewery, Buffalo Wild Wings for dinner (because it’s within walking distance from our house), and then walking home in the pouring rain… it wasn’t exactly a romantic celebration of our love, but I think it fit our couple personality well enough.  Maybe not the hiking… no part of me is a hiker.  But we did it.

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Why buy a card when you can just show one to your husband in CVS for free???  🙂IMG_5746

John is loving every minute that he gets to play with his girls.  Grad school is in a lull right now before his final push to the end and Lord knows that no one is ready for that to be over more than we are.  He’s also training for the Chicago Rock n’ Roll Half Marathon (donate here), which means a lot of late-night and early-morning runs.  I’m so proud of him!  And, our team is in first place for the amount of money raised.  I can’t wait for the race!!  Team Tessa will be out in full force!

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I’m settling into a new position at work this summer, which has been a (good) whirlwind.  I have also made some good connections with mommas in the Down syndrome community and I, like John, have really enjoyed time with the kids.  My travel bug bites are sufficiently calmed for a little bit from all of our mini-excursions, though my recently-renewed passport is just dying to be used…. someday….

Ellie

Can I tell you again how much I despise potty training?

The child is a nutcase and I adore her.  She’s smart as a whip and fiercely in love with all things Frozen.  We have seriously watched the movie at least 5 times a week for the last month.  Now if we could just get her to take a break from her imaginary universes and start listening to her bladder, we could move all move forward.  Ellie loves her sister to pieces and we haven’t had a single issue with jealousy or regressing to baby behaviors.  What a blessing! 🙂

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There is no filter on this picture.  Those eyes are going to break hearts someday….IMG_5778

Tessa

We had Tessa’s six-month IFSP review yesterday (her IFSP is the document that outlines her goals for development).  She is almost seven months old!  Her occupational therapy evaluation was yesterday as well.  On the positive side, she rolls like a champion and is actually “advanced” for her age at that skill!!  However, she is struggling to use her hands to do more than swat at toys or put things in her mouth.  When she was evaluated today, we learned that developmentally, her fine motor skills with her hands are around the two-month range.  So, going forward, we’re going to add in occupational therapy once a week.  We have to work on her core strength.  It’s difficult for her to do much of anything until that tummy strength improves.  It will help her move, play, eat, breathe, interact… it’s a huge focus for us right now!  As our developmental therapist (DT) explained to us, she’s going to keep developing cognitively and if her body won’t do what her mind really wants to, we have to worry more about her behaviors (which, by the way, happens in classrooms all across the world all. the. time.).  In true Tessa form, as soon as she heard her DT say this, she started to improve.  I swear to you that as soon as this child hears that she isn’t doing what she should be and we’re going to add more therapy, she hurries up and “gets” the new skill…

This month, we also started solids with Tessa.  She seems to be indifferent to it really.  Can I also mention how much easier it is to do things like start solids when you just have one child?  I don’t know why, but we have been really inconsistent in feeding Tessa at the table.  Weird.  Anyway… right now, she doesn’t eat a whole lot by spoon and she’s slow as molasses, but she doesn’t spit it out!  While we can’t always tell if she is interested in more or not, she will let us know when she is done.  With great joy, she spits it all in our faces by buzzing her lips.  The joys of parenting…  I have started using a few signs with her (“more,” “all done,” and “eat”) and I’m sure that once John reads this update, he will, too. 😉

Tessa’s emerging personality is sweet and easygoing but has a flair for the dramatic, she loves people and being held, adores her sister and daddy (and most other people)…  She sleeps well, is now eating well and provides great balance for us and her goofy sister.  She is such a great addition to our family!

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As our summer dwindles (but not too quickly!), I can’t help but feel so blessed for all that we have right now.  Our family, friends, and coworkers have been overwhelmingly positive, supportive, loving, helpful… I could go on and on.  For now, I just want to say thanks.  If you are reading this, you have been a part of this… of us and we can’t thank you enough.

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Spotted

I don’t usually see Down syndrome when I look at Tessa, but I do catch a glimpse here and there of her almond eyes or flat nasal bridge. I’m always curious to know if people can see it in her. Not fearful or frustrated, just curious.

I mention this now because we were spotted this weekend by a fellow member of our Ds community and it kind of jolted me a little bit into our reality. It’s something that I have been thinking about and planning for (as if I have control over it) for a long time. I always wondered what it would be like to meet other moms in our Ds community at random. It hadn’t happened yet, up until now.

Really, I spotted the little boy first. And froze. We were visiting a children’s museum in Kentucky with some family over the weekend. As I walked into the open parlor, he had his back to me, but his stance gave him away. I maneuvered my stroller to get a better view and knew immediately that he was one of our community. Watching him play with his typical brother and another little boy with Down syndrome was refreshing. They played and explored as all children do. They caused the same mischief as Ellie does. They laughed and enjoyed the exhibits right alongside their typical peers.

I’m sure his mother saw me looking at him, so, silly as this may be, I tried to keep Tessa turned so that she could see our baby girl’s sweet face. I wanted her to know that I wasn’t one of the people who stare… that I was a momma looking for better understanding of who my child might be.

She approached me, asked how old Tessa was and I shared. I stumbled around looking for something to say back and settled on asking her boy’s age (four). He ran by us at that moment and she grabbed him and showed him the baby. He took absolutely no interest in Tessa and squirmed away and that was that.

I wish I had been more engaging, that I had better articulated how watching her son run and play made me genuinely happy. I was too overwhelmed in that instance that someone knew. I’m just grateful that she was kind enough to approach me, to tell me that Tessa is a doll, and that she wasn’t upset by my awkward glances toward her family.

Kentucky Mom, wherever you are, you totally made my day.

And now, cuteness:

Fish lips

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A Princess Anna dress for the birthday girl

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Silly faces with Mimi (my mom)

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John loves a good Children’s Museum visit…

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Hanging out on the moon with Papa (my dad)

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The Six Month Settle

Whew.

That’s how I’ve been feeling for a couple of days now. I can’t tell you if I have been neglecting my blog because I’ve been too busy to write or if life is so mundane these days that I don’t have much to say. Summer is filled with peanut butter and jelly, Frozen, frolicking in the backyard, rinse and repeat. It’s been lovely, really.

It is hard to believe that Tessa is six months now. It feels like she has been with our family for as long as I can remember. While I know it existed, life before her… I can’t remember. I can’t remember a day when we haven’t enjoyed her sweet smile or tried to find a new way to tame her wild mop of hair. It’s like she has always been here.

Down syndrome, too, has settled into our life and become routine. I hear the comfort with Ds ebbs and flows… We have a six-month evaluation coming up shortly and while there is some anxiety about where Tessa is compared to her typical peers, I look forward to the reminder of how far she has come.

(On a side note, John tells me that we know she’s delayed and I should just forget about the whole thing. And I am. Slowly.)

These days, Tessa can roll, roll, roll! She’s finally taking interest in other things besides faces and will roll herself toward things that catch her eye. She isn’t quite sure what to do when she gets there, but it’s a start. She finally has some really good head control, which has made sitting exercises more enjoyable. She has lots more noises now that tubes are in, my favorite of which is a pursed-lipped “bbbbbbbbb.” She has been a real great traveler on our road trips this summer, as long as we have done a good job of feeding her when she was ready. We we haven’t…. Let’s just say that Tessa is very good about expressing her anger feelings.

If you are a newly-diagnosed Down syndrome family, can I say something to you? Life. Will. Settle. The mad rush of figuring things out and understanding a new way of life will be calm again. And someday, you might breathe in the comfort and try to remember Life Before. I’ll tell you, though, that from my side of settled, Before is not a place where I would return. This life is too sweet.

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Mommy and Ellie’s Day of Fun – Zoo Edition

When was the last time that you were so excited that you felt giddy?

For me, it was last night… err, this morning at about 1:00 am.  I love that feeling!!

Even as a little kid sharing a room with my sister, I can remember “nights before” (before birthdays or vacations or other events) where I would lie awake thinking about how excited I was for what was coming next.  I did this on the night before I got married.  I did this on the night before she got married!  I am trying to convince myself that she joined in on my “too excited to sleep” chatter… however, it’s more likely that I was just keeping her awake when she would just rather sleep and get on with it.

In any case, I was over the moon because Ellie and I had a special day planned for today… our first outing to the zoo!  Every year, we sign up for a zoo membership and we have really enjoyed taking Ellie on excursions to visit the animals.  This was my first time taking her on my own.  The membership that we sign up for comes with some tickets to do things like take a trolley ride and see the Dolphin Show – things that John and I have never actually done with her.  So this time, I made a promise to myself (and her!) that we would really live it up on this trip.  And so I present pictures from Mommy and Ellie’s Day of Fun, the Zoo Edition:

First, we had breakfast at our favorite place.  I wish I had taken a picture of the awesomeness that was my cornflake-crusted french toast with vanilla creme and strawberries.  Instead, here is Ellie with her remnants:

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When we got to the zoo (after taking the grand tour of the Western Chicago suburbs and hitting every. single. red. light.), we had to go on the trolley first thing.  That Daniel Tiger and his trolley talk had really gotten this kiddo excited…

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For some reason, Ellie was obsessed with this snake on the ceiling.  She insisted on a picture and talked about “our baby snake” for about an hour.

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After the trolley, we got into the first Dolphin Show of the day.  I remember the Dolphin Show being a spectacular showcase of amazing jumps and tricks where everyone in the front got splashed and soaked and had a rip-roaring time.  And, from a three-year-old’s perspective, it was all of those things.  As an adult…. not so much.

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We actually bought over-priced zoo food for lunch and had a picnic on the concrete because there were no tables in the shade within eyesight (balancing a tray full of food precariously on the handles of my stroller was not the brightest idea I ever had).  Then we visited almost every animal and went to the souvenir shop (something I have never done in my entire life) to buy gifts for Tessa (a plastic bumble bee) and Daddy (paper made out of 100% elephant poop.  No joke.  Ellie picks out the best gifts!).

Here is Ellie as an otter, which is super cute:

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After visiting some more animals again (Ellie insisted on another trip to the zebra because the first time, it was peeing and that was hilarious), we got Dippin’ Dots.  I’m not sure she really enjoyed them so much… I think she was a little unsure how to handle the little pellets that kept falling into her lap… but I still think they are one of my favorite foods.

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And here’s my obligatory “my kid is exhausted after a long day of (fill in the blank)” picture.  Notice the zebra stuffed animal that she chose for herself.  Thanks to the peeing that we witnessed, she can’t get enough zebra.

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We had the most lovely day!  If you have little kids, I hope you’ll take them, one at a time, to the zoo.  At the very least, for the poo poo paper.  $14.95 for elephant feces.  Worth. every. penny.

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Flip Flops

One thing that I have noticed now, as the mom of a child with special needs, is the tummy flip-flops.

You know how sometimes, people say things or do things that cause a split second, literal gut reaction?  Like when you see a cup of water about to fall over and you get a little flutter?  Well, that happens to me more often now than it used to.  A lot more.  And for the silliest stuff.

Take for example, the palm-reading infographic that I came across on my Pinterest board today.  I was looking through my pins for something related to animals to use with my Spanish 2 kids and found this:

Leer la mano: A fun activity for practicing descriptions! (tiempo presente) (ser) - Activity description in blog post

You don’t have to know Spanish to tell that it’s a “cheat sheet” to reading a palm… which is something I don’t believe in anyway… but that’s beside the point.  So, I’m looking at this infographic and suddenly, I remember Tessa’s straight little palmar crease (the marker that I studied and studied in the NICU) and I get a little flutter that says “Hey!  Her palm is different!  She probably can’t get her palm read!  Can she??”  And it’s not a good or bad or sad reaction, it just is.  

Here are some other flip-flop moments:

-Listening to a mom tell me that her child would never get into college if she wasn’t selected for National Honor Society

-Any time I walk past a Special Ed teacher or the Vocational Ed classrooms

-Checking the “disabled” box for Tessa on our insurance forms

-Hearing kids called each other “dumb” or “stupid”

-Any mention of college savings plans.

Is this crazy??  A part of me thinks that I might be crazy, but the more rational side says that there is no way I’m alone in these sudden changes in perspective.  I’m not bogged down by the feelings, they don’t upset me at all.  They are just… there.  Kind of like Down syndrome.  It just is.

But if anyone else wants to tell me that they deal with the same thing, I’d love to hear about it.  😉

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Belly Sleeper

I just went in to check on the girls and found Tessa asleep on her belly.

We did not put her down this way.

We knew that she could roll from back to belly, but she hasn’t ventured into the world of tummy sleeping until tonight.

Sweet Jesus, how am I going to get any sleep?!

I realize that all you moms with kids around my age are chuckling at me right now. My own mother always tells me “all YOU kids slept on your bellies and here you are today!” Yeah, yeah, yeah. But modern advances in medicine have changed a LOT of our ideas about infant safety. Take car seats for example. Have you ever seen a car seat circa 1985?? Yeesh.

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It seems to me that now, medical professionals subscribe to the idea that if you put your baby flat on her tummy and do not watch her every breath, she will die. And being a mother who wants the best for my child, I believe them… which is why this whole evening is so agonizing for me.

I did the same amount of agonizing with Ellie, but still feel like Tessa is different. Because she is less interested in rolling the other way. Because her breathing is loud still. Because dang it, I’m not ready for her to make this decision for herself! Ha. Leave it to my daughter to ignore her mother and do as she pleases at the ripe old age of not-quite-four months. Karma.

Parenthood is not for the weak-hearted.

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Progress – Month 3

(Typing on an iPhone is still terrible. Would someone please tell my husband to stop goofing around on his Spring Break and fix the computer??) 🙂

Our marathon week of doctors and therapies left us with far fewer answers than we were hoping. As always, Tessa continues to progress, but we are still trying to get to the root of what might be making the feeding process so challenging for her.

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Tessa is our little peanut, weighing in now at 11 lb 6 oz. It’s a good gain though, 2 pounds in a month. Overall she looks really great. She has been battling a cough for awhile, but it seems to be clearing up finally. Her clogged tear duct hasn’t resolved itself yet, but the idea of someone sticking a probe into a hole that tiny has me so freaked out that I’m massaging the heck out of her little gland every chance I get. So far, she’s pretty easygoing, so I can do this without much of a fight.

We also took Tessa to see an Ear/Nose/Throat (ENT) doctor for a variety of reasons, but mostly because she continues to make a gaspy, high-pitched squeak on a fairly regular basis. We had attributed this to the laryngomalacia (floppy vocal cords) that we believe she has, but want to be sure that she isn’t aspirating on her food when she squeaks. Unfortunately, the ENT was running late and we had to feed our child, which meant that he couldn’t stick the camera down her throat. Boo hoo. I wasn’t terribly disappointed to delay that experience!! He did notice that Tessa has some fluid in her ears and if it doesn’t resolve in a month with some nasonex, she’ll be having surgery to have tubes put into her ears. If she has the surgery, he’ll just do the scope at the same time. If not, I’ll have the joyful experience of trying to hold our squirmy worm still while he does it. Eek.

Physical and Developmental Therapy
The bobble head is still present, but Tessa is showing great improvement! She loves to look over my shoulder, so she practices holding her head up a lot. Just like Ellie, she loves to see what is going on in the world around her. We have gotten better at getting the arms to come to her center (midline), but it is still a battle. We have expanded our use of kinesio tape to be used not just on her abs, but also on her chest/pectoral muscles. It looks goofy, but it seems to be be working well to help her lift her head and chest up. Now that we are teaching her to use the correct muscles to roll (not the head and neck), she can get up onto her side pretty well, but does not flip. This might seem like she has regressed, but it’s actually much more important for her to use the right muscles! We also have a pair of “hip huggers” for Tessa to wear. They are tight pants with the legs sewn together (like a mermaid fin) so that her hips align better. Unfortunately, the wiggly legs have found a way to wiggle right out of the pants, so our PT is working on making a new pair that she can’t get out of!

Developmentally, we are getting lots of smiles and coos from our sweet girl. She has been very vocal for the past couple of weeks and I am loving it!!! While her absolute favorite is still the ceiling fan, she mostly prefers to look at people and looks for faces to match the voices that she hears. We are now working on getting her to track 180 degrees (follow an object all the way from left to right) and would like to see her show more interest in grabbing objects. The rough estimate is that she is about 30% delayed right now. Not huge!!

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On a positive note, I can get Tessa to eat about one ounce a day in an upright position. One ounce out of about 25 per day sounds terrible, but please understand that two weeks ago, just putting the bottle in her mouth while upright caused serious gagging. I’ll take the small victory.

I’ve been back to work for two days now. It was so nice to have such a warm welcome back from my students and coworkers. They were actually so nice that my perfect April Fool’s Day trick was a total flop!! I had planned to tell my classes that Tessa had a really bad day at day care on the first day and that I was going to take the rest of the year off to be with her. Every time I tried to work up the courage to joke with them, I couldn’t do it!!! It really is good to be back, but I do miss these girls (and guy!) while I’m bringin’ home the bacon…

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