Thursday, October 3, 2013

Day 3 of Down Syndrome Awareness Month!

The plus side to needing to stay in Tera's room until she falls asleep is I have some time to compose my thoughts.  What I decided to focus on today was Tera's routine or "normal".

This idea was prompted by filling my Amazon cart tonight with Tera necessities.  After her swallow study last March her pulmonologist diagnosed her as aspirating thin liquids.  As a result, we have to thicken everything she drinks.  They sell the thickener online and it's about $20 for jug of it.  Unfortunately we need to have one for our house, daycare, and Tom's parents'.  She's running close to low so I needed to order that.  And since I might as well just have my paycheck sent directly to Amazon anyway, I started looking through her supplies to see if we needed anything else.  As it turns out she also needs her probiotic which, in combination with a tablespoon of flax seed, has helped immensely in reducing the tummy troubles that used to plague her.

So what is a "normal" day for Tera? Well it starts around 5:45am when Tom goes to wake  her up for her nebulizer treatment.  When she's healthy it's only 10 minutes, when she's sick it's two treatments that take 10 and 12 minutes.  He then gives her her thyroid pill and her Prevacid with applesauce.  Next it's up to see me so we can get her dressed and ready to go.  I usually dress her and then Tom puts on her orthotics and shoes while I do her hair.  Because she HATES having her hair done we're always experimenting with new ways to distract her while this is done.  Lately that has been us singing various versions of the Wheels on the Bus.  And by 6:20ish, she and Tom are out the door to daycare.

She typically gets two to three therapies a week at daycare.  This has dramatically decreased our craziness at home and it helps because her therapists work with her teachers on methods to help with her sensory issues (which have decreased) and with her speech and social skills.  We always get a report of what they worked on and what we can continue to work on at home.

Depending on what Tom and I have going on on a given day, one of us picks her up by 4:30 or 5pm.  Once home we start getting dinner ready and that starts with getting Tera's dinner ready.  We try to have her eat the same thing we do, but sometimes it's just not practical or we give her variations of what we're eating.  But regardless of what her meal consists of, she starts with her yogurt.  Each day she gets a few spoonfuls of Greek yogurt, a table spoon of ground flax seed, a packet of her probiotic, her multivitamin, and a spoonful of honey.  Her milk gets thickened and most nights whatever she's eating needs either cheese or BBQ sauce on it (not usually both).  She does pretty well feeding herself although I do her yogurt just to make sure it all gets in.

After dinner we usually play for a while and then there's bath time.  We get her in the tub and she usually plays fairly contentedly for a while just dumping water back and forth between a few containers.  Tonight was a big night because we were able to get her to lay on her stomach and blow bubbles; two things I've been working with her on in her swim class.  Eventually though we do actually have to clean her.  At this point she usually insists on standing in the tub and fighting us at each step.  Some nights go better than others and some are worse than others.  We have to hold her arms at her sides to get her hair wet, which she doesn't like, suds her up, and then try and rinse it which is the worst step of the whole process.  One of us has to hold her so she doesn't fall because she's usually struggling with every pour of water over her head.  Most of the time as soon as we're done, she's fine.  Back in her room we have to comb her hair (reference our morning hair routine above), and I cover her in lotion because her skin is very dry and she has little bumps all over her arms and legs as a result.  Then I pick out one of her super cute pairs of jammies and we go play for a while longer.

Fortunately she doesn't put up much of a fight for bedtime.  We tell her it's time to brush teeth and feed the fishies and she usually walks right upstairs.  Actually brushing her teeth can vary in difficulty. Tonight I read a book to her while Tom brushed her teeth and every time she pushed his hand away, I would stop reading until he was able to finish.  We've essentially become masters at distraction.  Then she watches while Tom feeds the fish, and I take her downstairs for her second nebulizer treatment of the day before she goes to bed.

After the ten minutes, I take her upstairs to bed, she waves goodnight to the fish, and I lay her down in her crib.  Most nights I cover her with her weighted blanket to help with her sensory issues so she can fall asleep easier.  I sit in the rocking chair in her room until I think she's asleep, try not to fall asleep myself, and then I invoke my inner ninja to get across her room's insanely squeaky floors without waking her up.

And that's a typical day in the life of Tera.  When she's healthy.  I'm really hoping I don't get to write another post this month on how this routine becomes more complicated when she's sick.

It's not an easy routine some days, but we have gotten used to it.  It really is made much easier by the sweet face I get to look at throughout the process.

Oh, and by the way, I've decided to bring back some older pictures of Tera just because I want to.  So enjoy these flashbacks for the next few days :)

Down Syndrome Fact:
Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives. 

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