Hard-workin’ gal

September 1, 2010 at 8:05 PM    8 Comments »

Now we are one of those families who has therapists coming to their home!  Who ever would have thought it!

Verity’s physical therapist came after lunch today for the first time.

She explained that Verity has two goals to meet in Gross Motor Skills 101.

One is to learn to hold her body in midline.  That means that she can lie on her back and look straight ahead instead of allowing her head to flop over to one side.  In addition, she will grow strong enough to bring her hands together while lying in that position.  I had already learned some techniques to help her reach this goal, so her therapist just added a few suggestions.

Verity’s second goal is to learn to hold her head up while lying on her tummy and while sitting.  When her therapist showed me how to work on these two positions, I asked if I may take pictures, so I wouldn’t have to rely on my memory alone.

And when Doctor Morton called this afternoon to find out how Verity was eating, I was pleased to report that she is taking a full 3 ounces every feeding today, after a gradual increase from 1 1/2 to 2 ounces yesterday.  She acts very hungry when she wakes from her naps, and is not ready to be finished after half an hour of drinking.  He said it was okay for her to continue to work at the bottle as long as she is interested, but not to push her past that point.  She is taking about 1 1/2 to 2 hours on each bottle, but I am confident that she will get stronger and faster in time!

He further told me to put those baby scales back under the bed, and only pull them out once a week.

Thank You, Lord!!

Sooooo…

…goodbye feeding tube, goodbye baby scales, and did you know that 60 mL syringes make great water guns?!

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So, how do I look?

August 30, 2010 at 7:47 PM    38 Comments »

Mommy and I are both smiling.

We like Doctor D. Holmes Morton.  We like Nurse Donna, too.

First the doctor told Mommy all the good reasons why I don’t need that tube anymore.

~The tube causes reflux by keeping the hole into my tummy open.  That burning feeling might make me not want to eat very much.

~The tube might bother my throat when I swallow.  That would make me not want to eat very much, too.

~I have shown that I can drink enough.  In fact, I finished up a 95 mL bottle right before Dr. Morton’s very eyes.  (Two hours after I started it.)

~My heart is fixed, so it’s not needing extra energy.

~If I get a feeding pump, I’ll never get rid of the tube, says Dr. Morton.  Daddy and Mommy are so grateful that He kept them from getting the pump last weekend.  Sometimes God provides by taking away a need!

~I’m up near the top of the Down syndrome height and weight charts.  Daddy and Mommy and Dr. Morton and Nurse Donna are all quite sure I will not shrivel away to nothing.

The nurse listened to the doctor giving all these reasons for pulling the tube.  She heard Mommy say that she absolutely agreed with this common sense.  The nurse quietly took the socks off my hands to see if I wanted to pull it out myself.

But I didn’t, so Mommy and the nurse did it for me.

Dr. Morton said Mommy should not keep calling the cardio nurse with my weights.  He will “run interference” for Mommy with Dr. Chowdhury.  While they fight it out, I will show everyone what I can do.

Mommy is only supposed to let me drink for half an hour, and then make me wait about four hours.  (Unless I cry pitiably before then, of course.)  They just want me to get hungry enough to want to work at this.

Mommy will also keep stimulating the nerves in and around my mouth, and will help me work my mouth muscles like her friend told her to on the phone last night.

Oh yes, I’m taking medicine for that infection in my incision.  I’m also taking Maxi Baby-dophilus to keep the rest of me healthy while I’m taking the medicine.  And Mommy will wash my sore place with Epsom salts.

Now do you know what Mommy and I are smiling about tonight?

Thank you, God, for lifting our burden.

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<cut>

August 30, 2010 at 1:27 PM    9 Comments »

*waving hands wildly*

“Stop!  Stop everything!  This isn’t working!”

We had a plan for schooling, but we weren’t prepared to implement it, and that is a sure way to fail.

During this past week, I was not able to prepare for school and oversee the schooling process simultaneously, with the other pressures and demands on me.

We are still in crisis mode.  In addition to needing my hands and eyes to be fully focused on Verity for half my waking hours in order to teach her to eat, I was spending hours pursuing help to know how to teach her, with no success.  She was slowly regressing and needed skilled intervention.  I had been warned that without skilled intervention now, that these feeding issues could take months, if not years, to be corrected.  I heard stories of other children who still had G-tubes (surgically placed directly into the stomach) at two, or six, or nine years of age.

I was having trouble fitting six feedings into each day, and Verity should be getting seven.

Having divided attention (i.e. trying to prop the bottle with Verity on one arm, and trying to accomplish tasks with the other arm, with the bottle constantly sliding down and needing to be re-propped) was also contributing to her taking less and less by mouth.  I have needed to go back to fully supporting her cheeks and jaw when she drinks.  With my other arm, I hold her in an upright position, firmly holding her arms and legs straight and still.

Even the tube feed takes two hands now, because the portholes are loosening, so I have to hold the connection together with one hand when squeezing the syringe with my other hand, to prevent it from leaking or becoming disconnected.  We’re waiting to hear if we need a prescription for extensions for her tube.  We know God will provide for that expense!

I have one hand free when pumping, and that’s often when I eat, or type.  But I am unavailable to the children during this time.

On Friday afternoon, we asked Dr. Chowdhury’s nurse about the possibility of renting a feeding pump to put calories into Verity during the night while she sleeps.  This would give us room during the day to allow her to take less and spread her feedings out, to help her feel hungry at eating time, without causing her to lose weight.  Dr. Chowdhury okayed that plan.  Joe drove 45 minutes to the only medical supply place he found that had Saturday hours, only to have them tell him that we needed a doctor’s prescription.  That had to wait until today, so now we are waiting while those logistics are worked out.  The feeding pump is $140 per month, and the feeding bags are $256 for a month’s supply.  We know God will provide for those, too!

On Friday evening, the upper end of Verity’s incision began to ooze and the skin around it was inflamed.  She has an appointment at the Clinic for this afternoon at three.  Yes, God will provide for that as well!

The final blow was learning on Saturday that despite the blood, sweat and tears of the past two months, I had possibly been contributing the whole time to her current feeding issues.

I needed to be reminded that God had all this timing under His control.  If He decided to withhold information, He had done it for His own good purpose, and I must rest in the knowledge of that goodness.  I struggled to do that rather than regret and second-guess.

By Sunday, I was either in tears or on the verge of tears constantly.  Despite doubling my pumping time, my milk supply was dropping off fast.

I had to tell myself that God knows what pain I need to go through right now.  He may choose not to lift it because He knows what branches of SELF need to be lopped off.  And that lopping-off HURTS.  And when I weep, that doesn’t mean that I am a rebel, that means that I am a hurting human.  I can hurt, and at the same time know for sure that a loving Father sometimes needs to cause pain.  I know that this is proof that He truly loves me.  He will not turn His back on me and say that I’m not worth the trouble.

The Lord sent some encouragers to me yesterday.  One came to keep me company and offer hugs.  One came to visit and offer understanding encouragement from her own experience.  Her nine year old daughter with Down syndrome went through tough times as a baby, too, and showed us all how wonderfully she is thriving in her family now. The third encourager wrote to me–

“I want to give you hope–Verity does not have to be stuck with tube feeds–she can, and will, learn to eat–she will get stronger, and she will master these skills–REALLY–she will!  We aren’t going to wait for her to figure it out though.  We’re going to put her to work.”

She gave me an hour and a half’s worth of a listening ear on the phone last night, specific reassurance, and the first few steps of a plan.  Thank you from the bottom of my heart to my sisters in Christ for the time you spent ministering to me yesterday in my time of need!

A thoughtful Momys friend stopped in with a meal on Saturday, not knowing what a burden that would lift for us right now.  Thank you, friend, for going out of your way to help us!

Joe and I finally had some time last night to talk, and talk we did, into the wee hours of the morning.  I laid the situation out before him, and appealed to him to reconsider his decision to start school now.  I asked for more flex time to get fully prepared.  He could see that something had to give, and agreed to lift that added responsibility for the time being.  He didn’t lift my responsibility to continue blogging.

We are now taking whatever unpressured time we need to prepare for the new school year!

*Deep cleansing breath*

This morning, I made a list of the dozen or so tasks that need to be accomplished before we start back up, and called the children together to explain the new game plan.

I know that some of you have continued to pray for us, and we want you to know that we highly value those prayers during this stretch of the journey.  God is using you in our lives.  Even when I can’t manage to update you!

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Down to the heart

August 27, 2010 at 12:05 AM    14 Comments »

Does this look simple?  This Down syndrome thing?

It isn’t.

Not for me, anyway!

Complicated isn’t necessarily harder, mind you, just like simple isn’t necessarily easier.

When I sin against someone, the right thing to do about it isn’t complicated.  I must humble myself, admit that I was wrong, and ask forgiveness.  Simple.

But not necessarily easy.

Well, for me, Down syndrome has turned out to be the opposite.  It is complicated, but not necessarily hard.

There’s so much about this I haven’t figured out yet.

Way back in the early days of this journey, part of what I had to accept about Verity’s Down syndrome was that I didn’t truly know what it was that I was accepting.  What would Down syndrome look like or act like on our daughter?  I had to wait and see, along with everyone else.

That part hasn’t changed much!

I wonder about a lot of things.

She is good with her hands (and pulled her tube out for the first time this week).  She can focus on my face for very long periods of time.  She can vocalize with a consonant-vowel combination (and her “goo” sounds just like her siblings’ did).  She has a favorite stuffed animal and will smile at it and try to grab it.  She is very curious.  She seems to pick up new skills readily (except for eating).  Are those good signs?  Do they mean anything for her future?

Is her sweet, pleasant, affectionate nature just Verity being very, very Verity?  Or is it the Down syndrome?  She loves being held close, and I can hardly wait until the weather is cool enough that I can put her in the sling.

There are times when I study and study her face, and can’t see the Down syndrome, and other times when it’s written all over her face.

What exactly is it that I am looking for?  She has Down syndrome on a full-time basis, so all the ways she looks are included in the way Down syndrome looks, right?  Or is some of it Verity and some of it Down syndrome?

And why am I looking?  Is it okay that I watch her hopefully for signs of beauty and brightness?  Or does that just come with being a mother?

Sometimes the answer doesn’t matter one way or the other, but sometimes it does matter, and I must learn the difference.

I need to know what to accept and what to correct.

I know that some things, like the protruding tongue, must be accepted now and corrected later.

I have learned that when she arches her back and turns her head upward, which she does often, it’s not okay for me to accept that as Verity’s little quirk.  Babies with Down syndrome often have weak abdominal muscles and strong back muscles and find it easy to arch their backs.  If I don’t correct that habit, it will be detrimental to her proper development of gross motor skills.

How much is she picking up of what I say to her?  Does she connect my praise with what she just accomplished?  Does she connect any of my words with what she’s looking at?

Is it okay that I hope she is alert and expressive when others come to visit?  I didn’t care if my other babies were drowsy when company came.  Why do I hope she won’t cross her eyes at them?  It was funny when my other babies did that.  Will others understand that nobody can always be at their best, and not judge her by her worst?  Will they see her worst through eyes of love?

Am I giving her enough stimulation?  Will it hurt her to have down time, or should she always be watching or listening or moving or being moved?

Will it delay her fine motor skills that I keep her in infant gowns with sleeves that fold over her hands, so she can’t pull her tube out?  (Yes, I am to blame that I had to re-insert her tube this week.  Tried a cute little outfit on her, she fell asleep, I laid her down thinking it would be safe because I was not leaving the room, she woke silently, and pulled that thing out silently!)

Is the air conditioning (to keep her from sweating in her long sleeves) contributing to her congestion, despite the humidifier and air purifier?

It gets much more complicated than that, believe me.  Which pictures I delete from the camera card, and why, and will I ever change my mind about them?  My complex feelings when I see an older child with Down syndrome who hasn’t learned tongue and mouth control.  Realizing that we are in an experimental generation, and don’t actually know for sure that all the therapy will make a difference for her thirty or forty years from now.  Wondering if any of my questions and feelings mean that I still haven’t completely accepted my daughter’s Down syndrome.

But when I get down to the heart of the matter–

–which is another way of saying “the first and greatest”–

–I see that it really is uncomplicated after all.

Because more than anything else, anything else, we want Verity to belong to Jesus.  We want her to love the LORD her God with all her heart and soul and mind and strength, and love her neighbor as herself.

The same as we want for all our other children.

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We will, Deo volente

August 24, 2010 at 8:48 AM    13 Comments »

Ready or not, our academic year has now officially begun!

The children celebrated by camping out the past few nights.

I’m more ready for the new school year than I was last week, because of Verity’s recently acquired habit of sleeping through the night! Woooo-hooo! Does she have a apt sense of timing, or what?!  I don’t consider it official until a baby has done it for three consecutive nights, and she accomplished that by her eight week birthday on Saturday.  The past few nights, I’ve been able to get 5 1/2 hours’ sleep.  She has been restless in the night due to her congestion, but she hasn’t been waking up enough to want to eat as she had been from the time we came home from her surgery.  My body has been gobbling up the extra sleep and begging for more in a most greedy and ungrateful manner!

But the first day of school approached quickly and Verity’s care was still taking 1 1/2 to 2 hours out of every 3 throughout the day.  It became clear that our family was not “getting back to normal.”  We’re not moving back, anyway, we’re moving forward!  Hence my Help Wanted ad a few days ago.  What would our new normal need to look like?

Our whole family will be benefiting from the combined experience of almost a dozen moms who took time to look at our circumstances with fresh eyes and brainstorm some strategies for us.  I gleaned some valuable thoughts from every one of you.  Yes, even those of you who were self-deprecating and said that you probably weren’t much help!  And I have been truly blessed by the kindness in your tone toward me.  Thank you all!

~The underlying Biblical principle that we will be working from is that the members of our family who are bigger, stronger, and more capable have a responsibility to serve the members who are smaller, weaker, and needier. We will give the most helpless ones the highest priority, and so on from there.  We will continue to do all we can to safeguard my milk supply and help Verity move off the NG tube.  We will plan deliberate learning and training times into the four little boys’ day.

~We’re starting with the basic subjects, and will add in the rest of them as we gain proficiency in our new routine.  We’ll save the more involved projects for later, as well.  Keepin’ it simple for now.

~Joseph (11th grade) and Daniel (10th grade) will be counting hours (990) instead of days (180) this year.  This will enable them to be more flexible in crediting their work toward the state requirements.

~The four oldest will each have one day of the week to be “on call.”  This doesn’t mean a day off, it means that they will expect to fit their studies around helping with their four little brothers on that day.  I will do my best to utilize their help only during times I am unavailable, for instance, when making any necessary phone calls, showering, or pumping.

~Joseph and Daniel will learn how to teach some academics to the little ones this year, so I’ll be making opportunities to train them to my picky standards.  They have already had Lesson One: The Three Main Objectives for Our Preschool Program.

~Joshua and Laura will be in charge of the little guys’ phys ed.  Joshua also enjoys doing nature studies with them.  Because of this, we may move Joshua and Laura’s “on call” days around to appropriate the best weather.  Of course, the little ones get an abundance of free play time outdoors.

~Friday will continue to be Reading Day, as it has been for many years at our house.  For part of that day, Jane will entertain the four little ones by reading aloud to them under my watchful eye, killing the proverbial two birds with the proverbial one stone.

~We will utilize the playroom to provide quiet studying space in the mornings for the older children who are not on call that day.

~We’re looking for a one-piece desk for Jane to use in her room, so that she will be close by and more accountable to me when I am upstairs.

~We are working on expanding our repertoire of preschooler activities.  Last time we did that was two years ago when we had 1 1/2 year old twins and a 2 1/2 year old.  Now Stephen is the only one in that age category, and the other three have outgrown many of the activities.  I found a wealth of ideas on this website, scribbled down thirty or so that would suit our family, and on Saturday Joe went hunting for all the supplies we lacked.  This afternoon a friend came over to visit and pitched right in putting together activity packs with Laura, Jane and me.  We’re about halfway finished now!  What a wonderful help she was in the midst of our chaos!  Thank you, friend!

These preschool activities fit into four categories, Table Time, Blanket Time, Exercise Time, and Other.

Table Time activities will be useful to keep three little boys occupied while the fourth one is busy with his workbooks.

Blanket Time activities will be helpful for anytime my hands and eyes need to be focused on Verity’s care and the four little guys need to be with me in our tiny bedroom.  I discovered that bath towels are just the right size for this purpose.  And last night Joe picked up four inexpensive bath towels in the little guys’ favorite colors–orange, red, blue and green.

Exercise Time activities are the ones that Joshua and Laura will be doing with them for phys ed.  I haven’t made that particular list yet, but I will.

John Michael, Peter and James had a blast doing one of the Other activities last night after supper–washing the front porch with old cloths and water from their spray bottles.  While they scrubbed away, Stephen played delightedly with his little “wagon” made of a shoebox-sized box with a clothesline pull, taking his stuffed animal friends along for the ride.

A few pictures from yesterday.  James during Blanket Time.  I used our bath towels, but we need those for their intended purpose.

Peter showing me what he did with his nuts, bolts and washers.

Even little Stephen knew what to do with them without being shown.

John Michael has been chafing at the bit, waiting for school to start!

He’s a natural-born scholar.

Unlike some other people we could mention…

…who would rather be doing just about anything else, yes, even folding laundry or washing dishes.  (Here she was reading the Proverb that she copied using the beautiful cursive handwriting she has developed in spite of herself. <wink>)

Stephen putting his nuts and bolts away before following the others down the steps to the lunch table.

“…you ought to say, if the Lord wills, we shall live and do this or that.”

Deo volente!

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