Yo soy La Lay

adventures in family, faith, and Down syndrome

Dear EI Team

Dear Karen, Karli, Lori, Suzanne, and Beth,

And also Kim, Rachel, Joan, Shannon, and Kate,

And Sue,

Look at you all!!  We have been so blessed with not just one, but two amazing Early Intervetion teams.  I had been so terrified to leave our old home because it would mean a new CFC and a new team of therapists.  We had an amazing team, who Tessa mostly liked, or at least tolerated, and some of the moms can be so negative about their experiences with therapists (and rightfully so).  So we when we moved, I was nervous that we couldn’t possibly hit the jackpot twice.

We did!

You all have been such a positive influence on Tessa and our family. You give great suggestions for modifications that make her path more accessible.  You help us help her and made it so easy to get the equipment that she needs.  But what has been the most influential is that way that each of you has talked to us about her and her unique strengths and challenges.  It’s never about kids with Down syndrome, it’s just about Tessa.

Too often, I hear moms distraught by the delays that their child is experiencing.  They lament the IFSP meetings where the therapists rattle off all of the things that the child isn’t doing.  None of you has ever done that to us.  We aren’t unrealistic; we know that she is delayed.  All of you have helped us navigate those feelings and accept that her timing is all that matters.

As we head off to school in a few short weeks, I’m again fearful of leaving the safety net of our EI team.  As you all keep telling me, she is ready for school, and she is going to love it.  But without your home visits and your detailed reports, and your suggestions for what we can do at home, I’m so nervous!  Her preschool teachers sure have big shoes to fill.

Thank you so much for what you do. You are overworked and underpaid, but so so loved.

All the best,

Tessa’s Mom

Leave a comment »

The Walker

Ok, let me level with you here.

This is Tessa’s walker.


I hate it.

We have actually had it in our home for quite some time.  It largely sat unused for several weeks, a giant elephant in the corner, taunting us with it’s slick silver bars and fake leather arm support.

Have I mentioned that I hate it?

I hated her orthotics just as much at first, though now that hate has mellowed to a slow burning irritation.  I struggle quite deeply with the fact that her disability is worn on her face.  I know that there are equally as many drawbacks to having a disability that is not visible to any Joe Schmoe, but I wish that I knew that some people, some day, would pass her on the street and not just see Down syndrome.  When there is equipment, well, it just draws attention to her challenges.

In any case, we have the walker now and while I hate it, I have had to slowly come around because it is what she needs right now.  So much of parenting is reminding myself that it’s not about me; it’s about my children and their lives and doing what is best for them to grow strong and independent.  So while I may carry my own insecurities about people having pity on the girl with the walker, the more important cause is helping Tessa get up on her own two feet.

How challenging it is to see our children fight their own battles!!

The milestone of the day for us (me, really) was that we took the walker out of the house for the first time.  When Tessa’s therapists came, they suggested a session in the park a short walk from our house.  So off they went, and Tessa, strapped into her little walker, just raced along the path, shuffling her little feet as fast as she could.

She, the child who cried at the site of her walker just three weeks ago, went about a quarter mile – all the way to the park, actually.  She made it.

It’s not about me.  It’s not about the people who gawk as they drive by us peddling on down the road.  It’s about Tessa, and it’s about getting her wherever it is that she wants to go.

1 Comment »

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.

3 Comments »

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).

IMG_2213

Leave a comment »

Lesson #16: Babies can do Physical Therapy, too!

Our family loves (well-meaning) questions about our kiddo. We share our life with you all because we like people to understand how “normal” our life is – even though we have some fairly unique characteristics.

We get the most questions about the therapy that Tessa gets through Early Intervention, so I’d like to break down what her sessions look like for each area. Today, we’ll tackle Physical Therapy (PT).

We talked about Tessa’s low muscle tone at little bit at the beginning of this month. Because of the low tone, gross motor skills (rolling, crawling, walking, sitting, etc) are more challenging and take more time to master. On top of that, I think there is a natural human instinct to do things the easiest way possible. This can cause long-term issues, so the overarching goal in PT is to teach Tessa her gross motor skills and to teach her to do them correctly. If you remember back, Tessa started rolling at some ridiculously young age (like, 3 weeks or something). While we were so excited about this, it was tempered by the fact that she was doing it wrong. She would arch her back and roll over on her head. Not such a good long-term method.

Tessa has always been a mover. Since the first flutters in my belly, she has not stopped. One of the original evaluators actually wondered if something might be physically bothering her that was making her squirm. In the NICU, they called her “the swimmer” because of how she flailed her arms and legs.  Her motivation to go, go, go is high. So, PT is her strongest area of development. John wanted an athlete – he has one in Tessa!

During PT, her therapist works with her on her various skills. Right now, it’s crawling, sitting, and weight-bearing on her feet. To practice crawling, we physically help her move her hands (and sometimes knees) to teach her to move forward. In sitting, we do a lot of work on an exercise ball, teaching her to balance and not to throw her body backwards. She also likes to use her hands for balance when she sits, so we work to motivate her by giving her toys and objects that help her reach up and grab. She is mostly motivated by Mardi Gras-style beads and her own reflection in the mirror. 😉

Two of Tessa’s main supports in PT are her “hip helper” pants and her kinesio tape. She wears the hip helpers when she’s practicing her crawling. They are little spandex shorts that are sewn together through the legs.  She wore them for awhile when she first started EI to keep her hips from being malformed.  Now, she likes to stick her left leg out in a “splits” position when up on hands and knees and her little hip helpers keep her from doing that.

Kinesio tape is an interesting little invention. I have absolutely no clue how it works. Supposedly, it helps activate the muscles and kind of “reminds” them to work.  It seems strange.. . However, anecdotally, Tessa went all summer without it and it seemed like she slowed down. Once we were taping again in August, she has made huge gains. It may or may not be a coincidence… But I’m not opposed to trying!

IMG_6485.JPG

We love PT and we love Rachel, Tessa’s therapist! She has sessions once a week.  We try to practice with her when we can, mostly just through the way we play with her.  We do our best.  🙂  Up next, we’ll share about Speech!

1 Comment »

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.

photo (2)

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:

photo (3)

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.

photo 1

photo 2

photo 3

(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…

photo 1 (1)

and this…

photo 3 (1)

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

photo 2 (1)

Welcome back summer, we’ve missed you.

2 Comments »

Tummy Time

…. Of course, tummy time can only be mildly successful when you enjoy sleeping on your belly…

20140123-081949.jpg

1 Comment »