Yo soy La Lay

adventures in family, faith, and Down syndrome

Lesson #22: We take our colds very seriously.

Sitting in the doctor’s office, staring at the little yellow box.  It keeps beeping.  Tessa’s kicking the nurse, willing her to leave her finger alone.  We wait (im)patiently for the reading to appear and it doesn’t seem to be in any rush to do so.  There are fewer moments these days that feel longer than the ones that separate you from a potential hospital stay.

This time, the reading was good.

Sinus infection.  Pink eye.  Round of antibiotics.  Have a nice day!

Colds are a challenge for some children with Down syndrome.  There are a few reasons for that – smaller airways and sinus cavities, low muscle tone (slowing becoming the bane of our existence), which makes it a challenge to build enough strength to cough out the gunk…  All I know is that I’m not interested in another stay in the PICU.  So, I’ve become the hyper-vigilant Mother Bear that I was trying so hard to avoid.

When Ellie was younger, I had no fear about her catching a few minor colds.  Is that odd?  It’s not like I hoped that she would feel crummy or that she would have to deal with the symptoms.  Goodness knows that the sleepless nights weren’t thrilling.  I was just all about building up her immunity while she was young and exposing her to colds is one way to do that.  In no way is this my approach with Tessa.  I have no interest in exposure.  We aren’t living in a bubble, nor do I expect every person who has a sniffle to stay away, but I’m certainly more cautious about who holds the baby.  I would never (Never.) have taken Ellie to the doctor for the cold symptoms that Tessa displayed today.  But this is a whole new ballgame, isn’t it?

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(By the way.. do you see the new greenish paint in my kitchen??  LOVE it.)

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Lesson #14: (Not so) Defining Characteristics

This is part of the 31 for 21 Blog Challenge!

It is incredibly difficult to take pictures of an infant who has recently discovered that she can pivot on her belly.  Especially when said infant is highly motivated by the pretty pink iPhone case.

I did my best.

When Tessa was born, both the NICU nurse practitioner (Amanda) and the geneticist that we eventually talked to were sure that Tessa had Down syndrome.  I was very angry with them for a little while… she looked typical to me and I didn’t appreciate their insistence that she had it without any proof.  I couldn’t see Down syndrome in Tessa.  They could.

I can see it now.

I should reiterate that I don’t see Down syndrome when I look at Tessa now.  75% of the time (that’s a total random guess), it’s nowhere in my brain.  But I get what Amanda was saying.  Typically, children with Down syndrome display some or all of the following characteristics:

Sandal toe, a guarantee that no nail polish from your second toe will smudge when it touches the big toe (Am I the only one who has that issue??)

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Straight palmar crease (This is a miracle shot.  Tessa’s OT would be proud that I could hold her hand open long enough to get this):

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Almond-shaped eyes (which crinkle so sweetly with every laugh and smile, and look almost cartoonish when she’s upset):

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Flat nasal bridge… an incredibly difficult picture to get when this little booger just wants to look right at me all the time.

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Brushfield spots… little white sparkles in the blue of her eyes.  These are one of my favorite characteristics (and one of the trickiest to see on camera because of her dark blue color)  🙂

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Ultra cuteness

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There are pros and cons to seeing it.  Pros and cons to people looking into her face and knowing.  That’s a different post for a different day.  This beautiful girl has Down syndrome.  Look and her and you will see it too.  What you do with that information, with the recognition of what makes her unique, is what makes the difference.

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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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Lesson #5: There is no “should”

This is part of the 31 for 21 blog challenge!

As is well documented on this blog (for example, here, here, and here), I often struggle with when Tessa will learn new skills.  Lots of moms whose kiddos have special needs ask those questions.  Impatience is just part of the game sometimes.  When a baby is born with Down syndrome, the milestone charts get thrown out the window.  We all know our kids will get where they are going; it’s just a matter of when.  Waiting for when can be frustrating.  The feeling that she should be able to do something nags a little at the back of my brain.  From time to time, I freak out that I’m not working with her enough.  And yet….

In the ebb and flow of my feelings about Down syndrome, I often find it immensely liberating that Tessa works at her own pace to meet her milestones.  Milestone charts exist for a reason (above and beyond the ability for moms to compare their children 😉 ).  They don’t really apply to Tessa because she has a diagnosed disability and we have known, since birth, that she’s on her own schedule.  She has no should.  However, the knowledge of when things should happen is actually vital to the typical child.  When typical babies are born, milestone charts assist parents and doctors in determining if a child needs extra support or may have special needs.  Unlike with Down syndrome, you cannot see a learning disability, autism, or a sensory disorder by looking at a child.  Milestone charts, or knowledge of typical behaviors and development, help diagnose and support parents.  They ensure that the child can receive interventions at the earliest possible time.  We already have our diagnosis, and while a diagnosis certainly doesn’t make life any easier, the blessing of knowing what the diagnosis is is not lost on me.

For both Ellie and Tessa, at the beginning of each Well-Baby check-up, the nurse asks a series of questions about their development.  When I have to answer about Ellie, I feel pressure.  If she cannot do something, I go home and google when she should have mastered it.  When they ask about Tessa, I just laugh.  Many times, I get to say “yes, she can.”  Sometimes, it’s a “not yet” or “we’re working on it.”  But there’s no pressure.  I have no need to compare what she can do to anyone else,  because there is no should.  And that is empowering.

This post was inspired by some moms in my Rockin’ Moms group on Facebook, organized by the Down Syndrome Diagnosis Network.  Thanks, ladies, for asking great questions and being so supportive.  🙂

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Lesson #2: What Down Syndrome IS (and how to talk about)

This is part of the 31 for 21 Blog Challenge.  And it’s probably a little boring unless you know nothing about Down syndrome.  🙂

Lesson #2 was supposed to be Lesson #1.  We all know how that worked out.  Moving on.

The first lesson that we learned about Down syndrome when Tessa was born is what, exactly, Down syndrome is.  We received no less than four copies of the book Babies with Down Syndrome within the first week of Tessa’s life.  When she joined our family, I could flash back to freshman biology and picture neat little lines of chromosomes in my textbook coupled with the sweet little face of a child with Down syndrome.  However, that’s where the knowledge mostly stopped.  The books were welcome treasure chests of information about our baby.  Not everything inside was gold; some of the contents scared us or overwhelmed us, but it was a glimpse into where we were headed.

There are three kinds of Down syndrome: Nondisjunction (Trisomy 21), translocation, and mosaicism.  Tessa’s type, nondisjunction, accounts for 95% of cases.  It occurs equally across all races, genders, and socio-economic levels.  While it has a higher occurrence rate in older moms, 80% of babies born with Down syndrome have moms that are under the age of 35.  For a cute biology lesson on how it occurs, check out this video:

Trisomies (three copies of a chromosome) happen on other chromosomes as well.  However, many other trisomies (but not all) end in miscarriage or are fatal soon after birth.  The theory with Down syndrome is that because the chromosome is so short (and contains less genes), people can be born with Ds and live.

This link will take you to some very detailed information about which genes are on chromosome 21.  It’s a lot of science mumbo-jumbo, but it sort of explains some of the common issues that we see with Down syndrome.  Some of the genes on chromosome 21 affect cells related to muscle tone, eye sight, hearing, the heart, and blood.  So, in Down syndrome, we see higher instances of low muscle tone, poor eyesight, hearing difficulty/loss, heart defects, and some types of leukemia.

Low muscle tone (hypotonia) has been the biggest challenge for Tessa to overcome at this point.  It doesn’t mean that she is weak (weight lifting doesn’t really help in this case 🙂 ), it means that at rest, her muscles are more lax that would be considered normal and it takes her more energy to make them move than it would you or I.  While it obviously affects her motor development, it’s easy to forget that there are other muscles that are affected.  Stomach muscles, eye muscles, muscles used to swallow… they are all affected.  The opposite of low muscle tone is manifested in conditions like cerebral palsy.

It’s important to remember that someone with Down syndrome has 46 normal chromosomes and one extra.  So while Tessa certainly looks like she has Down syndrome, she also looks a lot like I did as a baby.  It’s also important to know that there are not “shades” of Down syndrome; there are no severe or mild cases.  You either have it or you don’t.

While I, personally, am not easily offended by most things, it’s important to learn how to best talk about Down syndrome within the community.  In the United States, the condition is called “Down syndrome.”  You refer to someone as a person, and if you need to reference the Ds, it is proper to say “a person with Down syndrome.”  It’s not considered appropriate to use the phrase “Downs baby” or “Down syndrome girl.”  In the Down syndrome community, it’s important to use people-first language.  We don’t appreciate the comment that our children “suffer from Down syndrome” or the notion that they afflicted with it.  It can be hurtful to some people to say things like “she barely seems to have anything wrong with her” or “you can hardly tell.”  We’re mostly a positive group and truly appreciate if you focus on our kids simply as kids, not as a diagnosis.

For more information on Down syndrome and people-first language, check out the National Down Syndrome Society’s website.

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Ready…. Set…….

Tonight, we’re gearing up for October.  🙂 Throughout the next month, I am participating in the 8th Annual 31 for 21 Blog Challenge.  It is a call for bloggers (like me!) to write every day in October to promote Down syndrome awareness.  31 days in October and Down syndrome is 3 copies of the 21st chromosome… make sense??  Each day in October, I plan to share something that I have learned since Tessa was born nine months ago.  I hope you’ll continue to join us on our journey.

Happy Down Syndrome Awareness Month!

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Nine Months

Well, the car seat carrier is getting heavy.  I’m not sure how much longer I will be able to cart my sack of potatoes around in it without enrolling in a gym to build up some muscles.  One of my most favorite things about Tessa is the fact that she literally melts into your shoulder when you hold her.  It’s a product of her low muscle tone (meaning: it takes her more energy to get the muscles going than is typical) and I adore it.  However, when it comes to her being carried in a car seat or otherwise, she gets heavy fast.  With little to no assistance from her own muscles, mine are tired.

I bring this up only because we had a nine-month visit with Tessa’s pediatrician today and she is tipping the scales 😉 at almost 17 pounds and 26 inches these days.  She’s essentially not on the growth charts for height or head circumference, though not surprisingly, her weight was on the percentile charts.  On the old, no-longer-in-use Down syndrome growth charts, she’s at a solid 50th percentile in all areas and continues to grow.  And, as John so correctly noted, she’s in the 100th percentile for cuteness.  For comparison’s sake, she’s about the size that Ellie was at 5 months.

(Yes, I did run home and check Ellie’s baby book for that comparison.  But, for the record, I was only trying to determine how much longer I might be able to keep Tessa in the six month clothes, based on what Ellie was wearing.  I think we’ll get through the fall and maybe part of the winter…. yippee!)

With good reports from cardiology, her ENT, and her eye doctor, we are thankful to have a little break from appointments until the end of the year.  We don’t have to go back to cardiology until she is about 2 and a half.  They are still monitoring the very, very small hole that Tessa has between the top two chambers of her heart.  It is causing no issues and we fully expect that the hole will close on its own in the next couple of years.  If not, she may have surgery at around 3-5 years of age.  No ear infections recently, tubes are still in, eyesight is normal, clogged tear duct resolved months ago… we’re in good shape!  For once, when the doctor asked for any changes to her medical history, I had nothing to add!!  Tessa did get her flu shot today as well and took it like a total champ.  She puffed out her lower lip a bit, but there was no horrific, blood-curdling scream as her sister tends to do.  We had originally thought that Tessa might be our drama queen, but I have to tell ya, she is not showing any signs of being dramatic at this time.  Let’s keep it going.

I’ve been oddly reflective over the past couple of weeks, but am saving my posts up for the 31 for 21 Blog Challenge that I will take part in during the month of October (which happens to be Down Syndrome Awareness Month).  More details coming soon…. And since my crazy schedule is keeping me from taking a tremendous number of pictures these days, I leave you only with Tessa’s new sleeping position… and solid evidence as to why I pick out the girls’ clothes every day (not John):

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At least they are just pajamas, but poor Tessa… 🙂photo (12)

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The longest yard

Ok, so not a yard… more like six inches… but still.  I’m not going to take two minutes of your time to talk your ear off today.  Instead, I’m going to share two minutes of Tessa that literally has me floating right now.

If you’ve been following Tessa for quite some time… or if you read my post about my defective child, what happens at 1:47 might just get you, too.  I watched the video about 4 times before I saw it…

To set this up, we’ve been struggling a bit to find things that motivate Tessa to move.  Today, I set up my iPhone camera to record her looking at herself.  This is what we got:

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