Yo soy La Lay

adventures in family, faith, and Down syndrome

Jump!

So many things…. let’s start here today:

For as strong a gross motor allergy as Tessa has, her desire to be able to jump has always been high – so high that I’d rank it right up there with “eating all the donuts” and “figuring out how to open the front door.”  We signed her up for Karate with Ellie through our park district.  At the end of class, when they would practice by jumping from one mat to the next, a small part of me was so sad to see her crouch down, expecting to jump like her peers, only to need the support of her aide and teacher to be lifted up across the divide.

Unlike me, it never got her down.  She developed her own methods, popping up from her crouch and raising up on her toes as high as she could, or dropping to her knees and pretending to be a frog.  She laughed gleefully each time she attempted to get airborne.

I hadn’t thought about jumping for a little while.  School is out for the summer and we declined Extended School Year services for Tessa.  In a nutshell, this means a summer without therapy.  She gets activity in through Karate and swim lessons – and life with her big sister is pretty much a 24/7 speech therapy session. Mostly though, we’re taking it easy.

And then this:

Did you see those sweet little toesies get airborne?!?

We work so hard for progress in every area, and she is making it.  Sometimes though, it just takes a little step back on our own part and letting her figure it out.  And when she does, well, it’s got us all jumping for joy. ❤️

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These boots are made for… crawling.

In case you were wondering, no, Tessa is still not walking.  I don’t expect her to in the near future.  In fact, I’m not sure that a human being exists on this planet that is less motivated to walk than she is.

No, really.

She can stand.  I’ve seen her do it. And she can travel across the room on her feet with very minimal support from an adult.  When she wants.

If she wants.

I’m not fretting about this at all, actually.  Quite the contrary.  Cool as a cucumber over here.  No, this is not sarcasm.  I know, I know, this is not what one might typically expect, given my attitude in previous posts.  One year ago, I was impatient.  I will still working on being “ok” with our own pace.

(In this moment, the fact that I was working on it is almost laughable.  I can’t figure out why, but right now, not being “ok” with a slower pace seems silly.)

In any case, we have put all the supports in place that she might benefit from.  Weekly therapy (which again, is not to speed progress, but to ensure that skills are developed correctly), Spio compression suit and pants, orthotic braces for her legs/feet, the most expensive pair of shoes I have ever purchased (they were 50 bucks… I’m cheap)…. Getting Tessa dressed in the morning burns as many calories as a session with Jillian Michaels.

But I digress.

She will walk, I am sure.  She just needs to find the right motivation.

As a side note, we met with our new pediatrician for the first time yesterday.  The appointment was great… Except when she asked about Tessa walking.  I literally had to bite my lip to keep from laughing when she suggested we try “putting some things in higher places so she has to work to get them.”  No shit.

The good thing is that Little Miss is indeed quite little, still under 22 pounds.  And, she is also quite cute.  Just look at how she charms her way out of walking with her Mimi today:

  

Girlfriend will get there when she gets there.  For now, I’ll just be thankful for the extra arm workout I get from hauling her around. After all, if she walks even half as fast as she crawls, we are in trouble.

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Life, lately

It’s been difficult for me to sit down and write these days. Not for lack of words, I assure you, but simply for an odd restlessness that had settled into my brain. (Hello, 3 am wake ups, can we be done now?)  We’ve had a lot of serious discussion happening in our home about our future and those talks have mostly drained my ability to look at computer screen and write it out.

I realize as I re-read what I just wrote that I sound terribly melancholy. Rest assured, I am not. As a matter of fact, especially this weekend, I have had a rush of peace with the whole idea of our new family adventure. We’re moving forward.  It’s all good.

Very quickly After, we knew the time would come that we would have to move.  For more reasons than I could possibly go into (not the least of which being the cramped quarters of a home we meant to move out of 3 years ago), it’s time now.  And because of the fabulous fact that we bought our house at the second-worst possible time in recent history, our move is going to involve a stint living at home with Momma and Daddy Dub.

I didn’t expect to spend the summer of my 30th birthday moving back in with my mom and dad.  Then again, I didn’t expect a lot of the twists and turns that I’ve taken in life, so we’re rolling with it.  We don’t necessarily have a timeline for selling our current place, which is nice because there isn’t much of a rush to pack it up.  We’ve started, but it’s not all-consuming.  True to my usual manner of business, I’ve got a few spreadsheets rolling to organize us.  No major task in our family is complete with out some help from Microsoft Excel!!

The kids are thriving lately.  Tessa’s annual meeting went really well.  The therapists have been really impressed with her progress and I was able to push for a specific goal that I think will target her communication skills.  We (very necessarily) have focused a lot on eating in the first year.  Now that she’s sitting, beginning to sign (yay!) and beginning to have more feelings and needs, I’m looking forward to working more on communication during our sessions.  We will continue to have OT, PT, Speech, and Developmental therapy each one time a week.  She’ll start wearing a Spio suit soon, which looks kinda like the clothes you wear for scuba diving if you ask me (though it is sleeveless and shorts, not pants).  You should know that we don’t live in a constant state of therapy in our house – that really, truly, most of Tessa’s “therapy” comes from trying to get the toys back that Ellie steals from her.

Just before we had our meeting, I ran across a quote on the National Down Syndrome Society‘s website that was a lightbulb moment for me. On the surface, I knew this, but the words struck me in such a way that I had a productive shift in mindset.  It reads:

The goal of physical therapy for these children is not to accelerate the rate of their development, as is often presumed, but to facilitate the development of optimal movement patterns. This means that over the long term, you want to help the child develop good posture, proper foot alignment, an efficient walking pattern, and a good physical foundation for exercise throughout life.

Ok, duh.  I know this.  But, for whatever reason, the statement that Tessa is 48% delayed in her locomotion (moving) skills hasn’t phased me simply because of this.  Because suddenly, the delay isn’t about me not putting her hip helpers on her for three days in a row.  She should wear them, yes, but it’s not about me holding her back, but more about teaching her to do it correctly.  Weird how things can strike you like that.

I look forward to telling you about my older child’s awesome development soon… at a time when she isn’t hanging off of my arm crying that I put too much milk in her cup.  Ah life… I wouldn’t have it any other way.

A picture of Ellie at hour 10 of an 11-hour Road Trip, just because.  She was 13 months at the time of this picture (same age as Tessa today).

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Milestone madness

I swear to you, Tessa comprehends every single thing I say to her therapists. Just as soon as I tell them that she is struggling with anything, she masters the skill and I end up looking a little silly.

Tuesday, our PT and her supervisor came for her weekly session and I had an extensive list for them. I expressed that I was still concerned about her refusal to use her left hand. I shared that she was sort of sitting, and sort of getting into her sitting position from laying down, but that she would not lift her left hand.

As of Friday, we have a sitter. And she’s a sitter who can get herself into a sitting position all by herself. And while she is there, she can play with toys!

I also vented a little about how I have to change the way I laugh because every time I laugh loudly (which is often), she cries. She doesn’t cry when anyone else laughs and I’ve been starting to get more than a little dismayed at being the sole cause of my child’s tears.

Since Tuesday, we have not had even one meltdown.

And, the icing on the cake is that our Little Miss started clapping yesterday. I didn’t even complain about that one yet! 😉 It’s very quiet and sporadic, but it is really happening.

I wonder if I start complaining that she can’t change her own diapers, will she pick that up right away??

Needless to say, it has been a week full of Tessa milestones. This will be our first week of four-days-a-week therapy, along with John’s last day of grad school, his graduation, two evening service projects with my National Honor Society kids, and the usual chaos that comes with the end of the semester for two teachers. We’ll see you on the other side…

And now, cuteness:

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Lesson #20: Developmental Therapy is a thing

This is part of the 31 for 21 Blog Challenge!

Pre-Tessa, I had heard of Physical therapy, speech therapy, and even OT wasn’t completely lost on me.  However, Developmental therapy (DT) is a totally new concept.

We get DT once a month, but now that Tessa is sitting, we will increase to once a week in November-ish.  A developmental therapist is kind of like Tessa’s first teacher.  She works with her on intellectual development – concepts like “in and out,” cause and effect, object permanence, all that fun stuff.  During sessions, we play with toys and watch to see how Tessa interacts with her environment.  In the beginning, we worked on getting her eyes to track objects and to show interest in faces, then toys.  Our DT also works with our family to get us connected to the Down syndrome community.  We talk about our own emotional development, our concerns and frustrations… I don’t know if this is in her job description, but Shannon has been a bit of a social worker along with Tessa’s DT.  🙂

Right now, our major hurdle has been Tessa’s startle response.  When anyone (besides Ellie, that is) laughs loudly, Tessa displays the same kind of reaction that you might see in a child who was just given a shot.  Sweet little pouty face, big fat tears…. She has the same reaction to dogs barking.  Other loud noises don’t affect her at all.  We sit right next to our Praise Team (essentially, a band) in church and she has no negative response to the music.  When we play peek-a-boo with her, she often cries when we reveal our faces.  Some strong smells bother her as well.  I know that many people who interact with Tessa feel bad when she gets upset.  However, it’s important for them to know that we would rather teach Tessa to react appropriately than to create an environment in which she doesn’t have to deal with this stuff.

Sometimes, children with Down syndrome can have a sensory processing disorder that causes them to struggle with different types of input.  We don’t necessarily think this is something that Tessa is dealing with, but it’s certainly part of our conversation about her development.  It’s something that we will continue to work on with her DT and also in occupational therapy.

Soon, Tessa will be at four therapies a week.  Sometimes, that can feel like a lot.  Right now, two therapies (Speech/OT) are at daycare and two (PT/DT) are at home.  We just recently changed her Speech time so that I could potentially be there to help out with that.  Recently, she hasn’t been able to get through a session of speech without crying uncontrollably or shutting down and going to sleep, so we hope that my presence will help her manage her feelings better.  So far, it has worked.  I don’t know if it is realistic to think that front-loading all of the therapy will help her in the long run or not, but if nothing else, the consistency in our weekly routine is nice.  Plus, the therapists give some really great tips for working with Ellie, too.  She is more work than her sister most days!!

Still cute when she cries.

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Lesson #8: EI, EI, ooooooh do we have goals!

This is part of the 31 for 21 Blog Challenge!

Tessa’s disability qualifies her for Early Intervention (EI).  Any child who is diagnosed with a disability or developmental delay can receive these services in some way.  Most kids would have to go through a series of tests to determine if they qualify for Early Intervention.  Down syndrome is an automatic qualifier.

In Illinois, Early Intervention is not free.  However, the out-of-pocket cost is very low in comparison to what one might pay for therapies outside of EI.  The monthly charge is on a sliding scale based on income.

Potential qualifiers for EI go through an initial evaluation to determine what services are needed to help the child.  The initial evaluation was the craziest part of the whole process for me.  A lot of professionals sitting in my living room, asking a million questions about Tessa and her birth and her progress (at four weeks old) and then asking what I would like her goals to be… not my shining moment as a mother.

What goals would YOU have for your four week old baby??

So anyway, an evaluation happens.  After the evaluation, when we have determined what the delays are, we write an Individualized Family Service Plan (IFSP).  It explains our goals for Tessa, written in a way that explains what we want her to do (and why).  This document helps direct the services that we receive.  Services received through EI must support the written goals, so it is important to write a plan that covers every aspect of your child’s development that may need help.  Here are Tessa’s goals:

Tessa will continue to progress in her feeding, be able to self-feed and eat a variety of textures and temperatures.
Tessa will begin to communicate with people in her environment (something was added
here about all different types of communication, but I don’t remember how we worded it).
Tessa will be able to sit and play without assistance.
Tessa will interact with toys and people in her environment in all of the positions (sitting, back, tummy).
Tessa will begin to move independently by scooting, crawling, and walking

IFSPs are reviewed every six months.  If we want to add any services, we have to have a meeting in which we decide that it is necessary.  John and I are of the opinion that we should “frontload” the therapy now, while we have time (ha.) and it is covered under EI.  The hope is that we won’t have to have quite as much when Tessa is older.  So, she has speech/oral motor therapy, physical therapy, and occupational therapy each once a week.  We currently have developmental therapy once a month, but are planning to increase to once a week in another month or so.  Speech and O/T both go to daycare to work with her.  We have D/T and P/T at home.  🙂

Tomorrow, more on what therapy looks like with a little baby.  I bet you can’t wait.  😉

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In which we begin again

Another school year begins tomorrow. That blissful stretch of open road that lay before me back in May has now reached a dead end. Or maybe one of those intersections where you have to turn left or right into a hectic routine. You can’t continue on the open road of summer forever… not in this house.

In two separate and totally unrelated incidences, my mom and father-and-law turned to me as I was playing with Tessa and said the exact same thing: “You’re really going to miss her this year, aren’t you?” This statement has given me pause because it isn’t something that anyone has said to me before in regards to either of my children. Not when I returned after maternity leave, not at the end of any other summer break… not ever. I adore all of my family members, even my husband ;), so I’m trying to put my finger on what exactly it is about this child that makes the separation more intense.

Basically, it’s because I’m a control freak. I mean, there is that sweet smile that sends us all over the moon (especially me), but let’s be honest here. In seven and a half months, I have missed exactly one doctor appointment and 1.5 therapy sessions out of a zillion. This school year, Tessa will have both OT and Speech at daycare without me. I may have to miss a doctor appointment here and there. And I’m not done training John on how to best keep track of information for me! It’s a forced transition into letting go just a little bit. That’s good for me and my child.

To be frank, my brain needs a break from Google. I spend every spare moment networking, researching, reading about Down syndrome. It makes me a little bit insane. It’s unneccesary. It doesn’t do any of us any good. I am determined to provide Tessa with a quality life with many choices. I don’t want to “cure” her or to change her, but instead hope to create an environment in which she can thrive. I can do that best by giving my brain a break and the best way I can do that is to begin the school year again. So off we go!

And now, cuteness:

Tessa helped us get the room clean in the best way she knows how…

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I just love this picture that my sister took…

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Ellie and Tessa, hanging out as sisters do…

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And finally, Tessa’s first toenail polish…

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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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Let’s Clean House!

So today I am wondering if my house will ever (EVER.) not look like this:

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To the left, you will see our “therapy bins.” Think that sounds fun and interesting? It’s actually all the junk that accumulates in our downstairs living space week-after-week. We call them “therapy bins” because every time Tessa has a therapist coming over, we throw everything into a bin and shove it into our master bedroom.

We have seven very full bins.

Did you happen to notice my half-painted toenails? The ones that I have been planning to paint before every one of the three road trips we have taken since Father’s Day? Someday…

On the bed, there are stacks of clothes that will surely find themselves piled on the floor at bedtime tonight. And then, we won’t know what is clean or dirty anymore, so they’ll probably get thrown back into the wash just because.

On the plus side, I did manage to mop the bathroom floor for the first time in…. for the first time.

The strangest part of all of this is that we are not busy people right now.

A couple of weeks ago, my husband asked me if I wanted to spend two kid-free days cleaning our house in celebration of our five-year wedding anniversary. While I’m sure that the most practical answer to that question would have been “YES! What a fabulous idea,” my response was something along the lines of “only if you want this to be your last anniversary. Ha Ha Ha.” I just don’t want to give up quality time to clean! While I really do enjoy a sparkling home (I think… It’s been a long time so I’m not actually sure), I enjoy living with my family more.

When I took Tessa to have one of her first blood draws, there was an elderly lady in the waiting room who was totally drawn to her. She told me “Don’t go home and do your dishes. My kids are in their sixties now. I can’t hold them anymore. I don’t remember the days that I scrubbed my floor or vacuumed. I remember the times that we played games or went for walks. Do those things.”

And so I am.

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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.

Medical
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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