Loving life

March 13th, 2012

Hi everybody!  It’s me, Katie.

Mama was taking so long to get around to telling you how I’ve been that I thought I’d help her out.  She wanted to tell about the vacation first, because it happened first.  “All things decently and in order,” says Mama.

But now I can tell you what I’ve been up to lately.  I have lots to tell you!

Here’s a picture of me on my way back home from The Cabin.  I’m a great traveler now, and never cry in the van like I used to do.  My big brother Joseph was giving me some milk very slowly, and I didn’t even notice it was going in.  That was very important just then.  I’ll have to tell you all about it.

 

My sister Verity was drinking her milk in the next seat over.

 

Verity and I are getting to be good friends now.   We’re happy when we’re together!  Verity likes to pat me and say hi to me!  I just reach my hand out and lay it on hers to show that we are friends.

Well, you know that Verity and I were sick, and got better again.  After my family took me to The Cabin, it turned out that I was still fighting the sickies.

Verity had fun on vacation.

I don’t remember much about it.

Verity can make fun wherever she goes.  She does funny things like this sight Mama saw when she came into our room to wake us up this morning.  She sometimes makes me giggle in my crib next to hers.

“Where’s Ver-i-teeeeeeee?”

 

I keep getting off the subject, don’t I?

Okay, The Cabin.

I smiled and laughed and felt comfortable when we first got there, but before long I didn’t feel like eating anything.  Again.

I cried a lot at night.  Again.

I tried to sleep all day long, even when I was sitting up.  Again.  Did you know that sometimes I try to sleep in order to tune everything out when it gets to be too much for me?  It was very hard on my family to see me like this day after day.

 

But on the very last day of vacation, I began to act more like myself again.

 

 

Does anyone outside our family remember what I’m saying when I make this face?

 

When we got back home, and Mama carried me up the sidewalk to our back door, I was so happy that I squirmed and squealed and laughed!  Home is my favorite place to be!

But…

…you guessed it!

Before too long, my low-grade fever came back almost every evening.  Verity and I still had leftover coughs.  My cough and sick belly still made me gag and vomit when I ate.  So I still did not want to eat at all, and even pushed the syringe away and fussed when Mama gave me my tube feedings.  She was thankful for the NG tube, so that I did not get dehydrated.  (She is giving me a mixture of Pediasure that her friend Shelly has generously sent, and breast milk that has been lovingly donated to me.  It gets so many supplements that Mama wonders how I will ever be willing to drink it all by mouth!)

My whole family felt sad to see me upset and refusing to eat.  They wondered if the doctors’ testing had missed something bad.  My church family prayed for me.  They’re good at praying and loving!

I didn’t want to do anything at all.

 

But after a while, I felt completely good again, and this time, I stayed that way!  My mama said that it was like the sun coming out in our family after weeks of gray clouds!

 

 

I started eating again, and each meal I ate a little more until a few nights ago, I ate a full supper!  I even drank a smoothie out of my little medicine cup!  Now I laugh when I see that it’s mealtime, just like I used to!

I’m still not using my hand to pull the spoon toward my mouth like I was.  But I’ll get there again, you just wait and see!

After all that nasty intestinal flu was finally gone, I’m doing so well with toileting that it’s been a long time since Mama had to change one of my dirty diapers.  (She was very proud of me when I was sick, though, because I tried so hard!)

She’s not going by a clock or schedule.  I always let her know when I need to go, and get impatient with her if she doesn’t take me right away!  My big sister Laura has learned how to take me, too.

Once I was really all the way better, I began to learn things again!

Since last week was therapy week, three special ladies, Miss Karen, Miss Julie, and Miss Marcia, took turns teaching Mama how to help me until they come again.  I like all three therapists, and I try very hard to cooperate with them.

Miss Karen is helping Mama with an important job.  This week, she brought me some knee immobilizers and measured me for some orthotics to help my feet.  After they come in the mail, Miss Karen will help to adjust my stander so I can use it!

I am making progress in speech therapy.  My family is thrilled that I can say “Mama,” the right way now!  You should hear the big deal they make every time I say it!  I always stop when they get excited and run for the video camera, though, I’m sorry everyone!

I also started gooing like a baby, and they are so happy to see me take one more natural step on the road to talking!  Miss Julie, my speech therapist, will be excited for me, too!

Miss Marcia, my occupational therapist, told Mama to try making a little rattle for me out of a medicine bottle.  At first, I didn’t want to touch it.

But by the next day I was picking that thing up and shaking it hard!  It makes me laugh to hear the noise it makes!

 

Mama also got more ideas to help desensitize the palms of my hands.  You see, for almost ten years I never had to touch anything with my hands.  So my palms were very sensitive and I didn’t like to hold things in my hands, or to touch them.  This is called tactile defensiveness.  Mama was doing deep pressure input on my hands, and that was helping.  I let her do that for a long time before I pulled my hands away.

I also let her clap my hands together, but only when all my family sings around the kitchen table after supper.

Now they’re helping me to touch many different textures over and over again all day long.  Mama says I am making fast progress!  Here are lots of pictures because Mama wants to show you how Laura is helping me, how I did not fight her at all, how I try to touch the textures myself, how much I enjoy this game, and what a long attention span I have.

Also because Mama thinks I’m a cute little doll-baby.

 

 

 

 

 

 

 

 

 

 

Here Laura stopped to tap my back muscles to remind me to straighten up.  That tickles!

 

First one hand…

 

Then the other.

 

That scratchy one makes me laugh!

 

 

 

My family noticed that I don’t usually look at the things I hold in my hand.

 

 

So they’re helping me build hand-eye coordination.

Every time I look at an object before I pick it up…

 

…or reach for it while trying to look at it…

 

…even when they hold it up high so I have to use different muscles in order to get it…

(Yes, I will be visiting a pediatric ophthalmologist one of these weeks!)

 

…they cheer for me until I am almost embarrassed!

 

I never get tired of hearing it, though!

 

 

If you’ve ever wondered just what occupational therapy is, my Mama found an excellent explanation of it on her friend Angela’s blog.

If you’ve ever wondered how Mama does therapy with Verity and me every day…

For one, Mama has helpers.

 

For another, she uses a nifty card system idea she got from her friend Anna.  Ours is color-coded–pink for Verity, purple for me.  We pull activity ideas from the front and put them in the back, and that way, we don’t get bored doing the same old activities every day.

 

Mama’s asking me to add another little helpful hint that she learned from her friend Elizabeth.  It’s called Press ‘n Seal, and it’s great for sealing off the port of an naso-gastric tube so it doesn’t accidentally come open and leak all over the place!  Maybe somebody else will be happy to learn this trick like my mama was!

 

As you can see from the pictures, I can stay sitting up for a long time now–about forty-five minutes!  I try very hard to stay upright.

When I get worn out, I rest.

I’m learning that the best way to rest is to cuddle with someone who loves me!

 

My family is glad, because…

 

…they have many years to make up for.

 

Did you know I love to be outdoors?  I’m so happy the weather is good enough for me to go out more often now!  I am fascinated by the bird songs I hear outside…

 

 

 

 

 

…and by the mittens Mama puts on my hands!  Pretty soon, we won’t need those things!

 

 

 

 

That might have been practice for what I’m doing this week.  Right now, I can’t use one of my hands at all.  This morning, Nurse Donna at the Clinic for Special Children had all kinds of trouble getting my IV started.  It took four or five tries, Mama lost count.

 

And Nurse Donna is really good at what she does.  Mama told me that, and Mama knows.  Nurse Donna has been taking good care of my sister Verity since she was just a few days old.

I cried very loudly indeed, but Mama was still so proud of me.  Do you want to know why?

It’s because I was so very, very upset, and instead of biting on my wrist like I used to do, I turned my face in toward Mama’s face for comfort.

 

And she did comfort me.

Maybe all that time when I was sick, and Mama thought I was tuning her out, I was learning after all.  Learning that Mamas are the best comforters.

Finally one of my veins cooperated!  And then I got to sit on Mama’s lap for four hours straight for an infusion of bone-building medicine.  I quickly forgot about the pain.

 

I took a little nap on Mama’s lap.  Mama thinks that this is about as good as it gets!

 

I get to go back again tomorrow and the next day.

Could you pray that the vein stays open and usable so Nurse Donna doesn’t have to start a new IV each day?  Our family would be so grateful if you did!  Thank you, everyone!

In happier news, did you know that it’s almost my birthday?  I’m going to turn ten years old in ten days!  Since I don’t understand about opening gifts, my family is going to give me one of my most favorite things–a hymn sing!

I also got an early birthday present from my Bulgarian baba!  She wished us all happiness and asked Mama to call her again through her translator!  Mama sent her a whole lot of pictures of me and she loved seeing them, and showed them to all the other babas!

Every time I see and hear my Baba Donka, I get all wiggly and giggly!

Just look at her kind, crinkly eyes and you can see why I love her so much!

 

I have one more little bit of news to tell you, and then Mama can have her blog back.  (I told you I had a lot to say!)

Mama wrote a little about me on her friend Patti’s blog, A Perfect Lily.

Patti is for life.

She’s writing about the prenatal testing that some folks hope will help our society “cure” down syndrome.  By “cure,” of course, they don’t mean “cure.”  They mean that if all the mamas abort their babies with Down syndrome, then there won’t be any more people with Down syndrome.

People like my sister Verity.  People like me.

 

My family is for life. I’m glad about that, because…

I’m for life, too.  You would know that even if I didn’t use words to tell you, because you know…

I should have died in that orphanage.

I should have died when I contracted pneumonia in the orphanage just a few weeks after I was born a month early, weighing between five and six pounds.  With Down syndrome.  And a heart defect.  In Bulgaria.

But I didn’t.

I should have died by the time I weighed seven pounds at six years old.

But I didn’t.

I should have died before my Daddy and Mama came to Bulgaria to get me four months ago…

 

And took me to the hospital to help me start to heal and grow.

Here I had already gained over one and a half pounds.

 

I’m so happy I’m alive.

 


“This day I call the heavens and the earth as witnesses against you that I have set before you life and death, blessings and curses. Now choose life, so that you and your children may live.”  ~Jehovah God

 

“The thief comes to steal, and to kill, and to destroy. I have come that they may have life, and that they may have it more abundantly.”  ~Jesus

 

 

 

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54 Responses to “Loving life”

  1. Hi there! 

    We have a surplus of Elecare Jr. and MANY medical supplies that we are happy to donate, including I.V. related supplies (dressings, alcohol and betadine swabsticks, syringes, saline and heparin flushes – just a ton of stuff)   Could you please email me and let me know if you would like us to send supplies?  Thanks :)  Laura

  2. Anna T says:

    Beautiful post!!  I need to get back to the “card system” : ) !!  I lovingly refer to Jacob as my “Texas Tornado”, he’s definitely “on the move”!!  You are often in my thoughts and prayers.  The picture of Katerina sleeping looks alot like our Jacob.  When I showed the picture to my oldest daughters they were both squealing, “Jacob, Jacob looks just like that when he falls asleep in his high chair!” I met a local Amish family through my service coordinator that’s youngest boy has Ds.  They **may** be in need of some of the things that you have for Katie if/when you’re willing to pass them along if they’re not already ear marked for someone else (stander, positioner…)?  I didn’t say anything yet but wanted to “ask” you first.  There little one also goes to the Institute for Special Children.  I can send you more information via e-mail if you wish, I **know** that you’re a busy, busy mommy…thanks!!  I also loved the pictures of your vacation and I’m so glad that you were able to enjoy some vacation time.  ((Hugs)), love and prayers!!   

  3. Sorry…

    I forgot to ask if you are using EMLA cream prior to Katie’s I.V. starts.  It’s a numbing cream that works very well if you put it on a good 30 minutes prior to the stick(s) and cover the area with a sorbaview or I.V. dressing (so it doesn’t rub off)  Our hospital has a protocal that all children are to have EMLA prior to any injection or I.V. start (where was this stuff when we were kids?!)  Anyway, just thought I’d mention this in case you haven’t tried it yet.  The teary post I.V. placement picture made my heart ache – I know that look all too well.  If Tyler could speak, he’d say, “Sorry Katie that you got stuck so many times.  I know what it’s like”  Hope your next I.V. is super easy!  xoxo

  4. Susanna says:

    Thank you, Laura K-P, for that wonderful suggestion! Making a note of it now…

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