Mostly sunny with a few showers

December 6th, 2013

 

It just wasn’t coming together, that Tommy update, also known as “Detoxing Sixteen Years of Pleven.

Unfortunately, that post, with all the current facts about Tommy neatly lined up outside the context of the rest of our life, was destined to look like mostly cloudy with very little sunshine.

These rainy late autumn days could positively use more sunshine!

So instead, here is a photo catch-up post with commentary.

It’s mostly sunny with some blustery showers here and there, just like our family is in real life.

You might even be regaled with a few tidbits from the most recent edition of our family newspaper, The NewsKeeper, edited by Laura F. Musser.

 

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Five-month-old baby Ben at the end of September, between hospital stays with Mama and Tommy.  All spiffed up for Sunday morning. 

More about Sunday mornings much further down this post.

 

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This was when he began saying, “Mama,” when he wanted me.

Wow.  Only two months ago he was still content to sit in a bouncy seat?

 

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Stephen turned five years old during the hospitalization blur.

A sample of Stephen–

Stephen:  I’m a traveler, an artist, and uhh, I forget.

Laura:  You’re a sergeant.

Stephen:  That’s in a story.  I’m talking about real life, and in real life I’m a traveler and an artist.  Really.

 

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John Michael, aka Jonamac, turned eight years old the next day. 

Our birthday cakes don’t ever look impressive, but they taste goooooood.  This year it was just nice that we could still manage homemade, and that I didn’t miss any parties.  Ha. 

 

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Little Miss Night Owl at the Ronald McDonald House on the night before her surgeries, staying awake until well past midnight and growing steadily sillier and sillier.

 

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Little Miss Night Owl at 6:30 the next morning, in the surgical services waiting room of our favorite children’s hospital.

A sage observation from the grandmom Katie never got to meet–

“You can’t soar with the eagles in the morning if you hoot with the owls at night.”

 

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Meanwhile, back at the House, my younger sister underwent a trial by fire.

Katie was in surgery and I was nursing Ben in the PACU waiting area when I received a call.  “I think Tommy pulled his tube out.”  Oh no!  His tube was freshly placed!  This means I’m leaving Katie in surgery and going to bring Tommy in to the emergency room!

Tommy had woken in the morning crying and wet through.  After my sister visualized his G-tube site, she found that the tube was still in place, thank the Lord!  But due to a phenomenon known to tubie parents as “feeding the bed,” he was soaked to the skin with grape Pedialyte.

So there she was in a strange place with someone else’s child whom she had met for the first time the day before, a child who had significant physical, medical, emotional, and behavioral special needs and was fighting and crying against her attempts to change his wet clothing and stinky diaper.

Here, my friends, is the child who greeted my eyes when we returned from the hospital a couple of hours later.

 

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My sister told me she loved interacting with Tommy and that her time with him made her wish she could always work with disabled kids.

 

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This is the sister who told me last year that from the very first picture she saw of Tommy, she felt like he was a very special little boy.

I made sure her work was rewarded to the best of my ability.  Thank you again, sis, for taking these pics and for your help in time of trouble!  I couldn’t have done it without you!

 

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My school-aged children perusing the same museum I visited when I was a child.  Our family moves through museums almost imperceptibly, with other groups of school children periodically rushing around them like a stream flowing around rocks.

 

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The twins, age seven, are acting out a story in which they are walking on the moon and find that a man is there.

James:  Don’t follow me, son.

Peter:  Yeah, don’t follow us, guy.

James:  We need to get away.

Peter:  Let’s use these horses.

James:  I need a second-year-old horse.  Can I use yours?

Peter:  Yes.

James:  I jumped on the second-year-old horse, and zoomed away!

 

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Verity loving one of her babies.

 

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Peter sat next to Tommy during Memory and History Time and was rewarded like so…

 

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Sweet girl feeding herself lunch before getting on the bus.

Notice the eye contact, always a challenge for our Kit-Kat.  She’s more comfortable with eye contact than ever before.  This is just part of the bonding progress she’s been making.

 

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Everyone outside our family who is currently part of Katie’s life understands and honors her need to learn boundaries by staying arms’-length with her.  We so appreciate this.  For a child who is mostly non-verbal, it is necessary to communicate primarily through our actions.  The more consistent we can be with our non-verbal communication, the more clearly the message gets through to her.  As other adoptive parents of children with attachment struggles know, even a small inconsistency in the message can set things back significantly.

 

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From a note I wrote to her teacher, Mr. Allen:

Want to let you know we’re seeing great improvement in Katie’s bonding and to thank you for working with us on this.  It’s been “tested” several times recently, with people outside the family getting in her space when she had a free choice of how to handle it.  She did not follow it up as she previously did by moving closer to the person and reaching out for physical attention.

 

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She occupied herself with toys next to the person each time; although it was obvious their presence registered with her, she acted appropriately.

 

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At the same time, I’ve seen a great increase in her reaching out to Joe and me for physical affection–hugs, squeezes, kisses.  We are so happy to see this progress and know it wouldn’t be happening if her “school team” was undermining our efforts.  Thank you from the bottom of our hearts.
~Susanna

 

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Having Katie attend the local multiple disability support (MDS) classroom three afternoons a week has turned out to be such a good thing on several different levels.

One, the head teacher is male–not a mother figure.  This is especially helpful for Katie as she displayed a touch of reactive attachment disorder as she moved closer toward me as her primary bonding figure.

Two, there are only six people who work directly with her–teacher, two teacher’s aides, and three therapists–and they all take the attachment issue seriously.  (Her teacher actually attended a couple of Bethany’s attachment/bonding seminars just because of Katie.)  Because of this, it’s more clear than ever in her mind that lovies are for family, not for anyone else.  They do not show her any physical affection, they clap for her and give verbal praise only.

Three, she learned in January and June that Mama goes away, Mama always comes back.  It took her until the beginning of the third week of getting on the bus to relax and show in her eyes that she “got” the new routine.  She’s learned that Katie goes away, Katie always comes back. She’s excited and happy to get on “her” bus, and she’s excited and happy to come home again and get lots of hugs and kisses!

Four, as we watched her master the new complexity in her world, we saw that positively affect her ability to expand the complexity of her thinking in other areas.

And five, she is making cognitive, gross motor, fine motor, and speech progress with the help of her new team.

 

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For us, it is imperative that anyone who works with Katie must understand and honor the “no physical touching for affection” rule, which is written into her individualized educational plan (IEP).  Healthy bonding with us is the foundation on which the rest of her development is built, so that comes first.  If something is going to suffer, it’s not going to be attachment.

I can’t resist sneaking in some fine motor practice.  Holding a small object upward between my fingers like this encourages my little girls to practice a neat pincer grasp, although they both need hand over hand help–total assistance for Katie (who still uses a raking grasp), minor prompt for Verity (who still uses a three-jaw chuck grasp).

 

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Sweet Doodle loves to help me make cookies.  It’s a sure sign our family has moved from survival to normal when we start making cookies again, and at our house, it’s a waste of time unless we make at least 12 dozen.  <grin>

 

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This is what happens to the youngest child of a family that’s gone and gotten all therapy-ized.

Well…and it helps if said child is strong, stubborn and motivated.

 

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It goes something like this.

I’d ask Joshua if he was free to hold Ben for a while, and the next thing I’d know, Joshua would be helping him transition from belly to side prop and from side prop to sit.  Or having him walk on his hands like a wheelbarrow because his legs knew how to crawl before his arms did.

 

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Where will this all end up, baby boy?

 

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This was after I trimmed about two inches off her length.  To think that I used to assume that people with Down syndrome couldn’t grow their hair long, because I always saw them with bowl cuts.

*shaking head*

Never assume.

 

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How I love this little face with the almond-shaped eyes and the crooked little grin.

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Hey boys!  Show me tough guy!

 

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Stephen:  Should I tell you a secret?

Laura:  Yeah.

Stephen:  (Whispering in her ear)  Joseph said I would walk around in the church and have his and Lindsay’s rings on two corners of the pillow, and I will give them to Joseph and Lindsay.

Laura:  Yep!

Stephen:  I wonder what pillow.

 

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Verity has gotten pretty good at doing her many puzzles, but continues to be too easily satisfied with imperfection.

“Don’t quit until the job is done,” says the mama.  “Try again, Verity.”

 

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Less than two weeks later, he is crawling and putting himself into a sitting position with ease.  We’re so used to making the little people work, I’m not sure we remember how to interact with them and not do therapy.

 

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Baby’s got the eyebrows and knows how to use ’em.

 

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While in the hospital, I discovered the sleep routine that works best for Tommy.  We now encourage him to take a long nap in the middle of the day [although I can’t bear to put him in bed for this, so he sleeps in his favorite rocking chair], then keep him up later in the evening.

This routine helps him to stay more calm throughout the evening, whereas before he grew more and more easily over-stimulated until he was out-of-control shrieking at suppertime, similar to a baby having a fussy time in the evening, just when the tired men were getting home from a full days’ work.  Remember that his shrieking also sets off Verity’s crying?  Often Tommy couldn’t handle sitting with us through supper and would need to mellow in the semi-dark and relative quiet and calm of the next room.  That only happens now if he missed his nap or there’s some unusual excitement like a birthday party.

He also sleeps better through the night now.

Otherwise he falls fast asleep very early in the evening and then wakes in the wee hours of the morning carrying on loudly–vocalizing forcefully, giggling, shrieking.

Joseph moved his mattress out to the playroom months ago.  He’s a lighter sleeper and needs to mentally focus for long hours as a full time software developer for one job and part time IT guy for another.  [Less than three months until he’s outta here, embarking on new adventures with his lovely lady.]

Daniel is the only other one who is disturbed by the noise, so if on occasion Tommy didn’t get his nap (such as on Sunday–more about Sundays further down this post), and he gets noisy, Daniel will move down to the couch to finish out the night.

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We are seeing progress overall with his over-stimulation and shrieking, but we fully expect the process to take a very long time.  Detoxing from an extreme sixteen-year experience, especially since it stretched back to his infancy, will not happen in a few months.

Once Tommy is accustomed to certain things, they are less likely to set him off, so he shrieks less than he used to.

Some of the time he’s able to calm himself after just a verbal prompt.  “Tom-my, calm-down,” said in a soothing sing-song voice.

Sometimes we can remove the source of over-stimulation, keep it out of his view, or distract his attention.

He always responds to deep pressure, so that’s still our most effective tool to help bring him back down to zero on the stimulation scale of one to ten.

But our plan for occasions when shrieking is just not acceptable, such as the up-coming wedding, is to have someone caring for him away from the special occasion.

It helps to understand that while Tommy is a survivor, he survived by adapting to a very tiny world.  His world has grown very large very quickly, and we can’t verbally explain most of it to him, mostly due to the cognitive damage that was done to him.  But we can remain loving and soothing and slowly help him feel more secure and relaxed.  And we are seeing baby steps of progress in this direction.

 

Napping peacefully~

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Tommy knows each of his siblings and responds to each of them individually.  He is very happy with attention from the older children and enjoys the companionship of the younger children.

The older children are all affectionate with Tommy.  They are incredibly patient with his challenging behaviors.  Joseph, 20, isn’t home much anymore as an engaged young man, but always takes time to interact kindly with Tommy when he’s here.  Tommy really connected with him as the older brother he first met when we traveled to Bulgaria, and gets very animated if he sees Joseph walk in the door.

Daniel, 18, takes care of Tommy in the night if his feeding pump beeps or if he wakes and vomits, and sometimes lends a hand when he’s home from work.  Tommy likes to go to Daniel.

Joshua, 16, is the tallest and strongest member of the family, and it’s his special task to carry Tommy up to bed at night.  He likes it that Tommy reaches his arms up to him and is happy to go to him.

Laura, 14, likes to tease Tommy playfully and make him giggle.

Jane, 11, is tender and nurturing toward him.

 

The younger children have had various reactions to Tommy.  We have allowed each of them to take their time and find their own comfort level with their new brother rather than pushing them to meet certain expectations.

 

John Michael, 8, took a little while to feel comfortable with Tommy, but now he chooses to spend time with him, talks to him, and will get him toys to play with.

Peter, 7, and Stephen, 5, were comfortable with Tommy right from the start and are demonstrative with him, especially Stephen.

Stephen has never shown the slightest hesitation but is very affectionate with Tommy, kissing and hugging him and saying, “I love you.”  He feels like Tommy is his peer because they are nearly the same size.  He likes to chatter to him, be silly with him, tease him and make him smile and laugh.  He’s very empathetic when Tommy is hurting, to the point of crying with him when he cries.

James, 7, is still not comfortable with Tommy, although he’s warming up a slight bit.  We think he may be feeling sympathetic toward Verity, as he has a tender, protective bond with her.  Verity doesn’t like to be near Tommy because of his sudden, loud shrieking.  It makes her cry and James doesn’t like Verity to be sad.  Once in a while, Verity will be brave and in a good mood and pat Tommy or agree to play near him, but usually she makes an issue about being too close to wherever he is.

Katie likes Tommy and he seems to like her, too, in a quiet way, as they do many activities side by side, although he doesn’t light up for her since she doesn’t do anything for him or talk to him.

He seems to have a special comradely and affectionate connection with baby Benjamin and is very gentle with him when he’s not over-stimulated.  Ben returns the affection but not the gentleness.  It’s amazing to see how patiently Tommy tolerates Ben’s grabbing his fingers or ears.

We always have to be right there, however, because if Tommy is over-stimulated, he has no idea what his hands are slapping.  On one of our trips to DuPont, Tommy was very over-stimulated and made Ben cry by accidentally slapping him as he flapped his hands.  I didn’t have time to stop and move car seats, so I drove the last hour or so to the hospital with one arm over the back of the seat, holding Tommy’s hand.

 

Playing in The Mother of All Leaf Piles turned out to be one of those hard-to-find activities–shared fun for all our children ages sixteen down.

 

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When I look at this photo now, I can really see how Tom-Tom has filled out in the month since it was taken.  It does the heart good to see evidence of progress, especially when it is so hard-won.

 

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Question:  How has Tommy progressed since he came home?

Answer:   Tommy has had a lot of emotional ups and downs due to needing medical treatments and hospitalizations for major gastrointestinal and feeding issues.

It’s been hard to see the lack of progress or even regression in some areas as a result of this stressful time of being in and out of the hospital and adjustment to the gastrostomy feeding tube.  We’ve learned a lot about him through all this.

Tommy has greatly expanded his vocalizations and emotional expressiveness since coming home.  Both his emotional expression and his vocalizations have gotten more complex.

Have I ever told you that Tommy had to learn to cry?

When he was first admitted to the hospital, his response to all pain was to giggle.  An inappropriate response to pain is not uncommon among institutionalized children, especially if they have suffered a lack of human contact.  At home Tommy would often wake in the night and giggle uncontrollably, and we didn’t understand what he was communicating.  We thought he was just trying to get us to wake up and play with him.

In the hospital, every time he needed a painful procedure done, and he began to giggle, I would get right in his face and model an exaggerated sad face while talking him through it.  “Ouch!  That hurts!  I don’t like it!  Ouch!”  Because Tom-Tom has no aversion to close face-to-face posture, makes good eye contact, and has rudimentary mimicking skills, the lesson was not lost on him.

By the time we left the hospital, he knew how to cry when he was hurting or sad.  And then instead of giggling, he began to cry at night.  The most heartbreaking sound.

Then we understood.

A small child, far from all that is familiar to him, even if that familiar is objectively unpleasant or even harmful, will often cope well during the day when there is lots of activity to distract his attention.  It’s at night that the sad feelings descend and the tears come.

When he cried, I went to him and talked soothingly while stroking his head and face, since he finds that comforting.

This nighttime crying went on for a week or so after returning home from the hospital, until he seemed to have gotten it out of his system…although…

We are in this for the long haul and must take a very long view.  We would be naïve to assume that any long-standing emotional complexity has been completely resolved that quickly in a child this fragile.

As another example, Tommy ground his teeth frequently for the first couple of weeks after we brought him home, and then we didn’t hear it again for months, until…

He began grinding his teeth again the day he quit eating and was admitted to the hospital in mid-September, and the habit hasn’t gone away again, although it’s more sporadic now.

It is painful to hear him grinding, knowing that it’s partly a stress response.  I don’t try to stop the grinding directly, it just clues me in to his stress levels and I respond by giving him more comforting and loving.

The first time he was admitted to the hospital, due to feeding intolerance, we found out that he was suffering greatly from a common orphanage infection (he is far from alone among his Pleven compatriots in having this infection).  He received antibiotics that seemed to take care of it, but we were warned that it may not be completely eradicated.  Sure enough, some of his symptoms seem to be coming back, so we are planning to have him re-tested.

One of the symptoms is terrible stomach pain, heartburn, and vomiting, which of course affects his desire to eat.  With Tommy’s extensive history of feeding trauma, it doesn’t take much to take his miniscule appetite away, and lost ground is hard to regain.  My current feeding goal for him is just to help him hold on to his skill of eating by mouth.

He has learned to manipulate a greater variety of toys when we’re working with him hand over hand, but he still chooses to simply shake, tap, or throw them when playing independently.  We expect this stage to last indefinitely, since Katie is still at this level.  Remember that when she first came home, she didn’t tolerate the feeling of any object on her palm, so Tommy is already far ahead of where she was then.  Again, we are taking the long view.

He has made a lot of progress in gross motor skill and strength.  He is able to get into a sitting position now if on a soft surface such as his bed.  He is able to tolerate the standing position for increasing lengths of time, although it’s not his favorite activity.  He will now turn to his side and reach up high to obtain a toy.  His core strength has improved.  He has more energy now that he is being fed a nourishing, high-protein diet with sufficient calories for growth.  He is also very motivated to be up and moving as he is now surrounded by many active brothers and sisters and sees what they can do.

 

 

Nifty little tubie pads, kindly sent to Tommy by a blog reader!

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Overall, Tommy likes being here with his new family, although he still seems to go through brief grieving times periodically, and gets impatient with all the sitting he has to do during the day with the feeding tube and pump.  His cognitive challenges, sensory sensitivity, and lack of impulse control mean that we have to take measures to keep the feeding tube inaccessible to him, and that restricts his mobility.  If we speed his feedings up, he vomits them back up.  His stomach does not tolerate feeling full.  And we didn’t see him really begin to fill out until we slowed his feedings down, so apparently that helps his body absorb the nutrients as well.

My servant-hearted sister-in-law sewed buttonholes in all Tommy’s sleepers for us so we can thread his feeding tube down his leg and out through the buttonhole.  Once this was done, we no longer had to put no-no’s on his arms at night during his continuous feeding as we did when he wore two-piece pajamas.  What a relief, as just the sight of those no-no’s approaching his bed made Tommy cry.

 

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Sweet boy.

We don’t love the foul, gag-inducing manure spreader/poopy diaper/garbage pail/pot-smoker-for-fifty-years-without-tooth-brushing/dead animal/orphanage poison breath that has actually worsened since you came home, transmits itself to our shoulders or arms when you give us “kisses,” and fills the space around you at home and in the car…

We don’t love the ear-piercing shrieks, the tooth-grinding, the audible, obvious, socially-unacceptable diaper-filling grunts, the huge, dramatic gag noises you make before vomiting [at our house, we Respect the Gag], and the many other loud, inarticulate vocalizations that accompany our family’s life, complicate our decisions, and limit our freedom…

We don’t love cleaning up the mess it makes when you vomit up your stinky, peptide-based formula…

But we love you, Tommy.

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You two are rare treasures and we are so privileged to have you in our family.

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Kate-Kate enjoys her daddy reading aloud in a different way and for different reasons than her siblings, but she enjoys it nonetheless.

 

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The following anecdote from The Newskeeper doesn’t match the following photo, and you may not understand our sense of humor.  (Remember, I warned you!)

 

The little boys had been listening to the audio Bible before bed as always, and were wondering what circumcision was.

When Mom explained it to them, they continued talking about it.

“The Bible tape said that all of the Israelites got circumcised.”

“Well, not the dead ones.”

Since I’ve now offended anyone who’s going to be offended by this innocently-committed little-boy humor, I may as well continue…

James:  Once I heard a bad man say, “Bad word, bad word, bad word, bad word, you bad word bad word.”  I can’t say what he said because it’s bad.

 

 

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Question:  Is Tommy receiving any evaluations or services?

Answer:  After several delays, he has finally received a complete evaluation and was assessed to be at an average 6-11 month old developmental level.  The next step is to form his individualized educational plan (IEP), and shortly thereafter he can begin receiving occupational, speech, physical, and feeding therapies as well as special instruction on a regular basis.

We believe he will be ready for this when the time comes, but it’s obvious that it has been beneficial psychologically that he had some time to get settled in and have his more urgent medical needs handled first, as that has been far more unsettling to him than it might be for a more emotionally resilient child.

Children who have suffered severe neglect never had the chance to develop healthy, normal coping resources to begin with, so they need us to pace life for them.  They benefit when we are able to keep changes to a slow minimum and give breaks between activities.

 

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In our life with this child, when so often there is no ideal solution that answers every side of his complex needs, only a constant balancing act, always choosing between the lesser of two evils, it is good to be reminded that God has placed Tommy in the family He knew would be the ideal for him.  It’s good to see concrete proof of this, such as the quiet, home-based lifestyle we had already established, enabling us to respond immediately to his need to withdraw from a situation, lots of siblings to keep him engaged so the task is spread out among many, and those same siblings to model skills for him.

The modeling is a bigger deal than you might guess in the life of a child who spent most of his life isolated from human contact and then with limited interaction with adults or observation of other very disabled children.

For instance, when we brought them home, neither he nor Katie had seen adults eat.  They would both get all excited when they saw us do something so basic as taking bites and chewing.

And it is plain as the nose on your face that when he sees the others hop up and walk away, he wants to learn to do the same thing.

 

Someday you will, Tommy. 

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Tommy’s second IV treatment for his osteoporosis meant he was hooked up to two sets of tubes at once.

 

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Being hooked up to machines doesn’t seem to bother him unless I’m actually starting or stopping a process.

See that tractor?  Tommy latched on to it soon after coming home, and it’s become his “security blanket.”  I take it along with him wherever he goes now, as it has a calming effect on him.

[Note:  Writing the above sentences about the tractor reminded me that we hoped to find a back-up tractor in case something happens to this one, as it’s looking more disreputable by the week, not helped by being vomited on and going through the dishwasher.  So I did a quick search for “green toy tractor” and found one at the top of the results listing on ebay.  It was offered for a low price but had less than two minutes before the auction ended.  I had to go ask Joe for our ebay username and password and subsequently won the bid one second…I repeat…one second before bidding closed.]

 

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Remember when I posted about being sick?  We all learned a lesson that time.  Next time Mom starts to come down with something, we switch modes.

Instead of hard-headed foolishness like going into denial, saying she didn’t have time to get sick, neglecting to do even one thing she knows to do to fight sickness while hoping she’d feel better the next morning, Mom goes to bed with Ben and fights the sick germs with everything in her arsenal.

If I’d done that, I’m positive I would have fought it off quickly instead of ending up in bed for three days with a full-blown case of strep that raged out of control for several days of denial.  No time to get sick, indeed.

I was the only family member who caught strep, but a couple of others felt “off” for a few hours the following week.  Peter was upstairs sleeping when I took this photo of his brothers during morning school time.

 

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Verity’s morning school time.

Scoooop

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pour!

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Stack them up…

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 …clean them up!

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Look out, world, Verity can unscrew lids now!

 

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Verity has the most delicate, lovely eyebrows.

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One of the many sweet faces that were chosen to be part of my friend Patti’s annual slideshow at the end of THIS POST.

 

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Kids have the innate skill of getting fun out of just about anything.  It’s a gift.  And a curse.

 

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Unless I stay home from the meeting with Tommy, Katie, and Ben, Sunday continues to be the most taxing and exhausting day of the week for me, and we are part of a terrific church family–the best!

Sundays with special needs children with behavioral problems…aahhh…now there’s a topic that must be viewed through a wide lens of good humor!  A topic that deserves its own post, titled, “Day of Unrest,” hee hee!

 

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Waiting for Mama to get baby Ben so we can go out the door to church.  This step takes one person four trips to the car–Tommy, Katie, Ben, and all their stuff.

 

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Ben doesn’t take kindly to being wakened from a sound sleep and stuffed into a jacket and car seat.

 

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Question:  Does Tommy still have diarrhea?

Answer:  The diarrhea was resolved with medication by the time he was discharged from his first hospital stay.

Then he began vomiting.

When we slowed his feedings down, it did help cut way back on the vomiting.  It also helped him really begin to establish a healthy growing pattern rather than to simply gain a little and lose a little, over and over.

When we brought Tommy home 6 months ago, he weighed 38 pounds and was 42 inches tall.

Almost six months later, he is 46 pounds and nearly 45 inches tall.

We tried putting more of his feeding through his tube at night when he had to lie down anyway, but this caused such frequent night time vomiting that we had to subtract from his night time feedings and add to his daytime feedings.

The practical outcome of this means he is sitting for twice as long as he was before, but he is stronger and more motivated to move.  This combination makes him restless and impatient, and he lets us know about it loud and clear.

We have to get him up and working in between feedings.  When we first brought him home, he couldn’t stand up for five minutes before his legs would get very shaky and he would begin sweating profusely.  Now he can stand for thirty to forty-five minutes before he wears out.

We’re also switching him to a higher-calorie formula so he can get his nutrients in a smaller volume and hence, a shorter feeding time.  Giving him “drinks” of water through his tube has never triggered his vomiting, so it’s not hard to make sure he gets the fluid he needs.

 

Yet Another Question:  How is Tommy attaching?

Answer:  He is excited when we come into the room and he asks for attention from us.  But he gets very animated and turns on the charm for any new people and then switches it off as soon as they leave.  This seems to have been a long-established survival skill for him to get human interaction, even negative interaction.  From observing his reaction to someone moving quickly close to his face or head (cowering and shielding his head with his arms), we surmise that he was hit, probably to stop his shrieking.

He has relaxed with us and he reaches out for physical affection much more than he used to.

He turns toward us when he’s upset and allows us to comfort him.

Then just this week, I observed that he did not reach up his arms for the various nurses who approached him, but he continues to hold his arms up for us to pick him up.  This may be a baby step in the right direction.

 

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Yes, Another Question:  What kind of attachment activities have you been doing with Tommy?

Answer:  When a child is more dependent physically, it can help build a bond because the parent is caring for all the child’s needs.

In order to get from one place to another, Tommy needs to be carried, so there is physical contact a more independent child would not get.

 

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I do almost all Tommy’s basic care and am always right there to comfort him and talk him through any medical procedures.

 

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The nurses at DuPont often kindly offered to give me a break by changing Tommy’s diaper or bathing him, but I explained his bonding and attachment needs to everyone who helped care for him.

 

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If it doesn’t need to be done by a medically-qualified person, I’d like to do it.

That’s my job; I’m the mama.

 

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Joe and Daniel do a little of Tommy’s basic care [Joe does his last care at night and first care in the morning as part of the strategy to help me get more sleep], but I’ve had to be the one to do nearly all the necessary care he doesn’t enjoy, such as feeding by mouth and tube (he doesn’t like eating, doesn’t like to feel full, and doesn’t like anyone messing with his G-tube!), and tooth brushing, as well as administering his IV treatments, doing more challenging therapy activities and teaching him boundaries.

 

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I try to pour on the affection to make up for it.

 

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We praise him enthusiastically when he makes a good choice such as stroking Ben’s head gently, standing up nice and tall, or pulling his hand back from touching something he shouldn’t.  He loves this praise and it makes him smile and laugh.

 

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We do a lot of open hand touching throughout the day.

 

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I do a lot of rocking and singing special Mommy/Tommy songs I made up, and this always makes him smile.

 

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He is soothed and calmed by snuggling–just soaks it up.

 

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His smile is like a special reward.  We all love to see Tommy happy and smiling.

 

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Little smidgeon first started pulling up to standing at 6 1/2 months.

 

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And cruises along furniture by seven months old.

Does this mean he’ll be an early walker?  Eeeeeeeeeek!

Baby Jack-in-the-box pops up in his bed over and over again, just because he can.  A seven-month-old doesn’t need more reason than that!

In this photo, the mattress is still in the mid-position.  The next day, I moved his mattress all the way to the lowest level after he began pulling himself out onto our bed.

Oh my.

 

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Just One More Question:  What does Tommy like to do?

Answer:  He loves to scoot around the house on his back and explore, rock on the big, overstuffed leather rocking chair with me and have me sing to him, swing, play in the ball pit, play teasing games, handle bright, shiny or noisy objects, play in the bath (although the pool was overwhelming to him this summer), ride in the quad stroller, go places in the car and come home again.

One of the greatest ongoing challenges of caring for Tommy is that superfine line between boredom and sky-high overstimulation.  We are familiar with this concept because of Katie, but her overstimulated response is relatively quiet rather than disruptive.

If you give Tommy a toy and it doesn’t interest him, he’ll drop or throw it.  If he likes it, he’ll hold it in the air, focus his eyes on it, flap and shriek loudly.

He tends to seek out rocking input as a way to calm himself as well as work off extra energy.  I’m motivated to find a socially-appropriate way for him to receive this input.

For now, we’re trying him on a big rocking horse with lots of support.  The first time, he felt extremely insecure and sought reassurance, as you can see from the photos below.

We put Dycem on the horse’s saddle to make it less slippery, but we could use some suggestions for how to adapt this rocking horse in order to secure him thoroughly and comfortably enough to rock independently.

If possible, and it may not be.

I think this would become a favorite indoor activity if he felt completely secure on it.

 

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One week before Tommy was scheduled for his first post-op visit, at which time I would be shown how to replace his G-tube, he pulled it out.

And just like that, the day’s goal changed.  Get him to the emergency room before the stoma starts to close like a freshly-pierced ear lobe.

I was so grateful that Joe and Daniel “happened” to be working a couple of minutes down the road that day.  And that although Tommy’s stoma had indeed begun to close, the medical staff was able to get it open again without taking drastic measures.

 

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The following week, we headed back down to DuPont for our scheduled appointment first thing in the morning.

This time, we hadn’t been there for half an hour when Ben suddenly decided that he no longer liked to ride in the sling.  He arched his back and screeched at the top of his lungs, which combined with everything else set Tommy off, and the ensuing cacophony surely reached to the heavens.

It didn’t take long to realize that I’d been sent on a verrrrry special mission that day, a mission to make every parent within our range more thankful during this holiday season.

Thankful that they weren’t me!  Heh heh.

Somewhere between one hospital department and another, squatting next to the screeching, flapping, hyper-excited child in the wheelchair while holding a sweaty, outraged babe in arms, attempting rather unsuccessfully to calm them both at once, God reminded me of my new life verse.

He must become greater; I must become less.

The point of life is not our current circumstances.

The point is not what He is doing in me or in our family.

The point is, and always has been, that He is seen and worshiped for who He is.

The point is that Jesus shines.

How He chooses to accomplish that through me is His prerogative.

He must become greater.

I rest content in that.

 

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One sweetie on Thanksgiving morning.

 

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Two buddies on Thanksgiving afternoon.

 

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Bellies full of Thanksgiving feast and a rousing game of Killer Uno on Thanksgiving night with their aunt, my younger sis.

 

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~~~~~~~~~~~~~~~~~~

 

Laura:  Do you like it that Joseph and Lindsay got engaged?

Stephen:  Yes.

Laura:  Why?

Stephen:  Because then we can go to the Rabes a lot.  And have dessert.

 

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The wedding will be on March 1.  We will dance, and I will be a bridesmaid! ~Laura, 14

~~~~~~~~~~~~~~~~~~

After searching the internet for practical advice for The Mother of the Groom, I was somewhat taken aback to discover my three primary duties–Show Up, Shut Up, and Wear Beige.  Ha!

 

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The happy pair.  Their joy is contagious.

We are so proud of you and excited for you, Joseph and Lindsay!

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~~~~~~~~~~~~~~~~~~

 

“Do not think that as you grow in grace your path will become smoother and the sky calmer and clearer. 

Quite the contrary.

As God gives you greater skill as a soldier of the cross, He will send you on more difficult missions.  As He more fully equips your ship to sail in storms, He will send you on longer voyages to more boisterous seas, so that you may honor Him and increase in holy confidence.”

~Charles Haddon Spurgeon, in Beside Still Waters

 

 

 

 

 

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50 Responses to “Mostly sunny with a few showers”

  1. Nicole says:

    reading this incredible post took me nearly half an hour ! Thank you for taking the time to “feed” us ! ;)
    I can hardly do more then lie on a couch and keep mymind busy reading the blogs of such activ and dedicated people…
    I have a special soft part for yours ! :)

  2. jo says:

    Wonderful update. I am so excited for you about the wedding. I was mother of the groom last year, a very surreal experience and now I am also a grandma. Did you get the children’s books I sent xx

  3. Galit says:

    Oh my.  What an amazing tapestry you weave!  I love how Ben is getting so much EXTRA input from the “therapized” home, rather than being “neglected” as so many would assume!

  4. Susanna says:

    Jo, thank you so much for commenting, so I can get your email address and THANK YOU!!!

  5. Susanna says:

    Nicole, haha! I borrowed freely from other things I’ve written recently, including info for Tommy’s first post-placement report, in order to put this post together and it still took longer than a week to get it accomplished!

  6. Jeunesse Nageotte says:

    Dear Susanna.  I sometimes feel very alone in this journey as mama to a sweet darling who has been so neglected.  Thank you so much for posting such detail; it not only has encouraged us greatly at times but the practical information from tubes to attachment to stimming has been a treasure trove for me.  May I ask what formula you are feeding Tommy through the tube?  Our Lily still refuses anything by mouth and I am concerned about the formulas and if they are really good for her long term.  Also, the tubey thingy you posted, how does it help and is there somewhere to purchase these?  I am still trying to tape gauze pads around her tube because she just has a oozy, yucky tubesite even though it is kept clean and such.
    Oh, and thanks for the laughs too.  Oh, Sunday, day of rest, where have you gone?  It’s all good though.  Because He is good and these are children in home, where He placed them.
    Love and prayers to you all…

  7. Katie says:

    Amazing! Utterly amazing! Those smiles – Katie and Tommy – just light up the world! Makes my day to see them shining! My heart just broke at Tommy crying during the night – once he learned how. Sweet boy. SOO grateful he has a loving family to help him learn peace and belonging. Thank you for continuing to include us on this beautiful journey. :-)
    You asked for suggestions on the rocking horse – I’m not sure if swings would work the same for him, if he would get the movement/sensory he is seeking, but I thought of this post on another adoptive – and amazing – family’s blog and wanted to share. 
    http://www.angeleyesadoption.blogspot.com/2013/08/a-house-of-swings-and-sensory.html
    God bless,
    Katie 
     

  8. Sarah says:

    Is there anything you can do about his breath? I remember you used to talk about Katie’s breath, and then she went to the dentist, which I’m not sure if resolved it. Do you know why it is getting worse?
    Sorry if that seems like a totally random question to ask after reading a long, inspiring, beautiful post. I’ve been reading for a long time and absolutely love to hear about your family, but I don’t ever comment. For some reason that part had my curiosity and I just wondered what is done about that/why it persists or gets worse. 

  9. Tiffiny says:

    Just like Nicole, it took me the better part of an hour to read (then re-read) this post, as I relished every bit of it! After a stressful week in our own adoption process, I so needed good news. I especially appreciate:

    The photos of Katie the “Night Owl” — hilarious and sweet; she is shaking the dust of Pleven off;
    Baby Benjamin update — or should I say “Your youngest son who clearly intends to run with his brothers by Easter?” He is a handsome little chunk of ambition!
    Verity…her sweet smiles that remind me so much of our Addie’s precious smiles. I love her long hair, her fashions, her tenderness with her baby-in-a-box (while sitting in a box).
    Your boys…care-taking, sweet boys to Tommy in so many ways. Boys with active imaginations and curiosity (oh, that circumcision story! And horses on the moon!). What pride you must have in all your sons!
    Katie…I still am so amazed by the life radiating from this little girl! Her story is an on-going miracle to witness.
    Tommy. What progress he is making! A long road is ahead, of course, but Susanna…crying? That he is crying now makes me want to cry! God bless you all for your tender hearts toward Tommy; he is exactly where he needs to be to heal. 
    Your honesty and humor…

  10. Nikki says:

    I love Verity’s puzzle of her name! Where did you get it? I foster 7 kids with special needs in India. These would be great for 2 of my kids that we are working on letters recognition, fine motor, and name recognition with! Would love to know where I could buy them some.

  11. Mishelle says:

    Since you mentioned that Tommy likes deep pressure, have you tried a SPIO suit?  One of your therapists will know what that is–they can really help kids who need deep pressure stay focused and centered and cut down on overstimulation.

  12. Deanna says:

    What a wonderful post Susanna!  Everyone is thriving, in their own way and at their own pace.  It’s marvelous.  I love to hear your stories, and see how excited your children are about Lindsay and Joseph.  They are a precious couple. We couldn’t be happier about the man God has brought into her life. I have to say that Kyle, is so delighted that Joseph has so many younger brothers!  
     

  13. Stori says:

    Girl… I don’t even know where to begin! I love your long blog posts… and all of the God moments you shared! And all of the Katie updates. And all of the Tommy updates. And all of the Ben updates. And all of the Verity updates. And the family updates. AND THE WEDDING UPDATES! God bless your beautiful family and your beautiful heart. You will be a great mother-in-law… I have two little girls and you have a lot of little boys, maybe we could arrange something? :) I’m praying that God continues to meet you in the moments where you feel weak. I know he will, but I like to pray it anyway!

  14. Tami C says:

    Another encouraging and inspiring post – thank you, again – for sharing your sweet family with us.  I love to glean every little bit of info I can that might help me be a good mommy for Chad… God is so great, and you do a wonderful job of shining the light on Him through your blog.  (((Much love and prayers.)))

  15. K says:

    Great post!  Okay, I’m thinking about how to get Tommy to stay on the horse and I think he needs a glider instead, for now, but one with a free-standing frame, which you’d probably have to make. http://www.meijer.com/s/swing-n-slide-wind-rider-glider-swing/_/R-217098?CAWELAID=1379259460&cagpspn=pla&cmpid=Google_G_US_Meijer_eCom_PLA_Catchall_All_Products_Catchall&gclid=CLjO_cDunbsCFQVafgodoEgANQ&kpid=NE4693L
     
    Or, take the horse off and use a seat like baby jumper has.  There are smaller rocking horses with bucket seats.  or something like this:
    http://www.smirthwaite.com/rocking-horse.html
     
    how about this:
    http://www.adaptivemall.com/pltoyroplsw.html
     

  16. MamaV says:

    Loved this! It’s so fun to see the whole family in action. We pray for you lots!
     
    love,
    Virginia

  17. Jen says:

    Love the quote at the end! You are an angel on Earth. Don’t forget your need for self-care, too! 

  18. Carol says:

    Thank you so much, Susanna. This is such a long, multi-layered post that I hardly know where to start… The part about Tommy learning to cry and crying in the night made me cry too. Tears coming again thinking of it. I loved so much about this post, including the summaries of how each of Tommy’s siblings is relating to him. I love that there’s no blueprint for how interactions should be and that you are letting each of your kids go at their own pace and interact in their own ways. I need to be working on Christmas presents, but I’ll be back to reread this again, I’m sure. Love to you!

  19. Anna T says:

    Dearest Susanna,  
    I really enjoyed reading your update…lots of beautiful pictures, writing and “news” that brought a smile to my face : ) !!  Please know that you are often in my prayers and I now know how better to pray for you.        
    Have a very Merry Christmas and continued blessings for you and yours in 2014!
    Anna

  20. Cassandra says:

    My oh my have you been busy!  So here is the photo that startled me the most.  The one where Tommy is in the highchair with his green truck.  There are two such photos but this is the first one that I am commenting on. In that photo one can see – really see – a glimpse of what Tommy might have looked like if he was not systematically abused for 16 years.  Every child named Tommy that I know is a bit of an “imp” and your Tommy strikes me as that type, too. I bet he would have been a boy full of child- like mischief and adventure, a boy whose energy knew no bounds. I’m so sorry, Susanna, that your son was treated so badly. 
    I wonder if it is more obvious to we, the readers, because of the infrequency we see he and Katie but Tommy looks sooooo much healthier!  Seeing he and Katie standing together as they held on to the kitchen table well that ……that was powerful. Thank you for not being afraid to answer God’s call. We’re all a little braver because of you and Joe’s example. 
    I was surprised to read that Katie is attending a public school program. Not surprised in a bad way, just surprised. And impressed because it tells me that you are not so rigid in your thinking that you would deny the kids an opportunity that may benefit them even if it was out of your comfort zone. For an experienced home educator like yourself it had be a soul searching experience. Even though I don’t know you in real life it makes me a tad bit less concerned for you since it gives you a brief amount of time where you have to be hyper vigilant for 3 kids, not four :). 
    I love reading about you modify and adjust according to demands. Perhaps what I most admire is your ability and willingness to not let fear creep in your every day life. Personally, I do try to take captive my fear for my child’s future but it isn’t easy. 
    And I certainly am far from mastery in that regard.  
    Oh yes, I hear you about Sunday’s being a mixed bag. I almost don’t know where to begin with that one. I’m just glad we have a Savior who will meet us where we are, when we want and even when we don’t.  
    What made me most happy to read is that you are paying attention to sleep hygiene, as I like to call it.  
    Cassandra

  21. Robin says:

    thank you so much for an update! I’m sure it’s just a glimps of everyday life with many but it opens our eyes to your beautiful world. 
    I do want to ask if you need more tube buddy pads made?  Also I think… The flannel side (brown) down would soak any leaks better than fleece but you have probably figured out what works best for you so I don’t want to step on toes! 
    Robin

  22. Susanna says:

    Oh Robin, it didn’t even register with me that the two sides were different fabric! Thank you! I’d been placing them with the scratchy Velcro facing outward in case it would work loose, so it wouldn’t irritate his skin, but that is so unlikely to happen! I will put the brown side down! Also emailing you about something else…

  23. Susanna says:

    K, thank you for taking time to find and write some suggestions! Great ideas!

  24. Susanna says:

    Stori, thank you for this very specific prayer. If He answers it, that means He will meet me every single moment of every single day. I know He’s answering your prayers; thank you.

  25. Susanna says:

    Mishelle, I so appreciate this practical suggestion and will definitely mention it to his therapists!

  26. Susanna says:

    Nikki, the name puzzle was given to Verity by a friend who has a young adult daughter with Down syndrome. She and I are planning to get together this week, and I’m making a note right now to ask her if she remembers where she ordered the puzzle. :) I’ve visited your blog and am fascinated by the work you are doing! Bless you, sister!

  27. Susanna says:

    Sarah, oh, the breath. It is sooooo common among older kids with special needs coming home from EE. I do know that nearly all the kids in that category who are coming home from Pleven have the SAME problem; we parents have talked it over. Some of the younger ones aren’t as affected. We assume it’s partly caused by rotten teeth, although some of the kids have the terrible breath and their teeth aren’t bad. Reflux can cause bad odor due to dying esophageal tissue; that could be a culprit for some of the children. Katie’s teeth were coated with calculus that was easily removed and between that and general detoxing and good care she smelled sweet not long afterward. In fact, she has sweet breath that smells good like a baby’s. :) :) :)

    Tommy’s teeth are unbelievably bad. Some are rotted so badly they are stumps showing below the surface of his gums. Some are intact but rotted. Some seem to be okay under a layer of yuck. A couple look good. Our family dentist said he would need to be sedated twice–once for a good cleaning and exam, and one for dental surgery. But because he has severe osteoporosis, they will not pull his teeth due to the risk of having his jawbone crumble, so we have to wait until his bones are healthy enough to handle it. It is just another of the many scenarios we face where there is no immediate ideal solution. He’s undergoing the same IV treatments for his bones as Katie has. In fact, Katie has multiple teeth that need to be pulled as there are so many crowding into a tiny space in there, but we have to have the all-clear with her bones before we can proceed with dental surgery. She has one more IV treatment and then in January we can repeat the DEXA scan. Hoping to hear that her bones are good and strong!

    Tommy is also not the only Pleven graduate whose breath has worsened since coming home. My theory is that it’s not being helped by the formula we’re giving him, but so far it’s helping him in every other way and has been readily available through the Oley Foundation for the cost of shipping or gas to go pick it up, so until we have a better option…

  28. Susanna says:

    Katie, thank you for commenting and including the link to the blog post about the sensory swings! Valuable to have this info!

  29. Susanna says:

    Dear Jeunesse, you are not alone. So not alone! I wish there was a way I could help you connect with other parents who are doing what we’re doing.

    The formula Tommy has been tolerating is Peptamen Jr. Prebio 1 cal. The proteins are partially broken down, but not all the way down into amino acids as in some formulas. I’m not crazy about the idea, either, but for right now, it’s a solution that’s working, we’ve been able to find it easily on the Oley.org exchange, and we hope that once he’s a bit more stable, we can gradually move from there to real foods. Is Lily struggling with GI or other issues? If she doesn’t need a consistent, specialized diet with significant amounts of vitamins and minerals, and she’s just getting formula because it fits through the tube, it seems like blended real food would be a great and even fun option to try! There are lots of tubie parents who blend real food for their children. I’ll dig up some contacts for you and will email you when I’ve got a list together, ok?

    Also, about the tubie pads–they help keep the skin dry, so less irritation, and I’ve heard it also decreases the chance of developing granulation tissue. I clean around Tommy’s tube with an alcohol wipe, then put a layer of antibacterial ointment on the skin before putting the new tubie pad on. Also, I’m finding something out for you and will email about that, too, when I know more. :)
    Love and a hug!
    Susanna

  30. Kristi says:

    You are amazing, Susanna!! God bless you!!!

  31. Robin says:

    I was wrong- you are correct by placing FLEECE next to the skin to wick away moisture.
    Robin

  32. Jen says:

    I wonder if you could “sand” the seat on the plastic horse to make it more “grippy”?  Or perhaps cut some strips of sand paper to help hold him there?
    You continue to amaze me with all that you do but with your amazing positive attitude and sweet spirit!  God bless!

  33. Lorena says:

    I love so much about this post – the photos, the lengthy & varied details, the photos, the reminder that we decrease (what a relief, sometimes!) as Christ increases in us, the photos, the Charles Spurgeon quote (a great comfort to me just now) …. and did I mention the photos?  ;)  Your journey is such a blessing to me and to so many more.  Thank you for sharing so generously with us all!!

  34. Susanna says:

    Cassandra, I know you are one of the people who would understand when I say that we now live in a position where decisions can look very different from the inside than they do from the outside. The unusual responsibility we’ve been given comes with the risk of being misunderstood by those who have opinions without having all the facts, but we remind ourselves that it’s part of being a grown-up to get over caring about being misunderstood. :) You are right that we did soul-searching, but it was soul-searching of her teacher and his classroom. :) Katie is developmentally of an age to need early intervention-type services like we accessed for Verity (in other words, she’s like a toddler who needs therapy), but they go by calendar age, not developmental age. We wouldn’t even have considered it had we not been confident in the caliber of those who would be working with her and confident that she was ready to be away from us for 12 hours a week. :) We also knew that the plan was not set in stone, but could be changed if it turned out to be unsuitable. So far, it has been *perfect* for her.

    ~Mama Bear :)

  35. Cassandra says:

    Thanks for the reply.  I also live in a town where it would make sense to move here for nothing other than our early intervention services. And as you refer to, it is entirely staff dependent.  My dd went to the early intervention program and still refers to the teacher as Aunt Lia.  This woman is like a legend in town and rightly so. It was a very special time in my life as at that point I still believed that love could conquer all. I still largely believe that to be true but some of our kids have been so damaged that God would have to intervene to change the natural progression of nature (aka a miracle) to become the person they would have been minus the neglect. Of course I know that I know that I know that God is still in the business of miracles but for whatever reasons, sometimes the miracle looks different than the one we were hoping for. 
    I’m increasingly finding my peace with accepting how badly my poor child was treated in her institutional life. But I love my girl and so I can’t help but to find myself angry over the injustice of it all. Very little emotional energy towards grief and anger these days. Now I pour that emotional margin into being “solution oriented.”  However, who will care for her after my husband and I are gone is not an easy thing to solve. We have other children who are committed to being there for her but until I see them marry a like minded Godly spouse, that’s still a wild card. Here I go getting ahead of myself again rather than practicing being present in His presence. 
    So this is what I want to say to you today. I know you mentioned that Tommy has been evaluated at functioning between a 6-12 month old. I’ve got a good track record with my instincts and I suspect his cognition (though not currently accessible) is much high than that. I hope you will be able to look into assisted communication devices for him. If you haven’t checked into this kind of stuff you will be beyond stunned to learn how many many non verbal and seemingly disengaged children are entirely cognizant but have no venue to express it until an assisted communication device is employed.
     I know he has not been dx as autistic but he certainly has autistic like qualities.  For many autists, their inner life is not so much about being on the “Autistic SPECTRUM”, but rather on the “autistic PRISM.”  From the incidental comments you have made about Tommy, I suspect that he is stuck in something like a non verbal prison. Some of your insights about him tell me that he has a pretty sophisticated thought life. (Like how well he differentiates who in the room can serve what purpose for him.) Even a lot of his sensory issues/low threshold for frustration speak to his heightened awareness of his environment. Obviously I could be totally wrong but there is something about his eye contact and the way you describe him that tells me he is most definitely not that low functioning cognitively. Raw IQ, if you will, does not change even with neglect though, of course, neglect will bury it sometimes beyond recognition.  Still, I think Mr. Tommy is a young man with a lot more to say. 
    An uncomplicated computer driven communication board might work for him. 

  36. Cassandra says:

    P.S.
    There are many assistive communication apps for the i pad and i pod you might enjoy looking at. They require more eye hand coordination than he seems to have at the moment but who knows – the hand over hand technique might help.  
     

  37. Lauren S. says:

    Going with what Cassandra says, have you heard about Carly?  She is a young autistic woman who has become somewhat famous in autism awareness/special educational circles because of her communication through typing.  She’s a very girl but communicates very little verbally, if she communicates verbally at all.  
    http://carlysvoice.com/home/
    And thank you for the lovely update.  I pray for you frequently as I feel your deep pain on sleep deprivation.  Thank you for hearing and obeying God’s call to be honest with your readers and to keep them up-to-date.  Your blog has caused me to rethink many of my priorities and the manner in which I respond to people.

  38. Lauren S. says:

    Oh, and do you believe his teeth cause him discomfort or even pain?  It’s obvious you need to hold off on major invasive procedures until he is strong enough to heal from them, but it must be hard to think of him as continuing to suffer from dental issues that have to wait.  Praying that his osteoporosis will respond quickly to the treatments so you can move forward on his teeth!

  39. Ginger says:

    I just love, love, love this post. That is all. :)

  40. Melissa says:

    I was soaking up every bit of your post, loving every moment, relishing all the smiles and progress and wedding and vibrant imagination–until I read that you believe that Tommy may have been hit.  I know that is not news to anyone who adopts from orphanages (especially, it seems, the ones in EE), but that just brought it back to the forefront for me. I’ve heard several things cited: Lack of education about disabilities (due to a lack of sound infrastructure), cultural conditioning, a calloused heart due to seeing so much suffering–but I still don’t understand how someone could turn to Tommy with anything except a desire to see him grow and learn. It boggles my mind. Of course, not very many years ago, Tommy would have seen the same treatment here in the States, so maybe there is hope for EE…they’re just behind us. Hopefully with people like you, advocating and praying for change, the changes WILL come.
     
    Don’t mean to spoil this incredibly lovely post by being such a downer :) My heart just broke anew for Tommy and Katie, and I am worried for other P kids I’ve seen (one in particular who we have wondered if we could adopt). I’m so proud of Ben; my baby boy is going to be eight months soon and already crawling looks like it’s not enough for him :) Take care of yourself, mama!

  41. Elizabeth in NC says:

    What a wonderful post. I am fascinated by all that you know and are learning about all the children in your family. Thank you for continuing to share your family’s journey. It is inspiring and heart-warming.
     
    I wish I had known about the tractor, I would have loved to have sent you ours. We had that tractor but I just donated it about a month ago. I am glad however that you found an extra!  

  42. sarah says:

    We have one of these horses…http://radioflyerwagon.blogspot.com/2009/01/radio-flyer-classic-rock-bounce-pony.html
     
    I found the link from a “random” website because I don’t see the removable harness on the radio flyer website. I am not sure if we have an older model?
     
    All this to say, perhaps someone handy could make something similar to attach to the horse you have?

  43. Kim says:

    Well sweetie as always you have brought my focus back to The Truth.  I just experienced a bit of “perceived adoption process slowdown blues” and found myself feeling very sluggish (and my house very dirty!).  Now the article 5 is done and we are waiting on the month long pre – court process to end.  I am remembering that our King doesn’t require us to be perfect but that we lean on him.  I need to lean more.  And thank him – over and over again.  Then I can clean my house, remain in hope, smile, and love.  Now if only YOU sister would move closer and remind me of this over and over again. :)
    Your blessings are abundant dear friend.  Keep up the praise!! 
    Kim in MA xxxoooo
    PS.  What happened to the pictures of your living room on the other post?  I need inspiration!!
     

  44. Susanna says:

    Kim, I’m not sure what pics or what post, but I’m QUITE sure our living room wouldn’t inspire anyone, haha! Love you!

  45. Kim says:

    There was a post a while back with a small tour of your living room.  It was so clear and clean with only the essentials.  I need to work on this before the two treasures come!!  HELP!!!  (Or just move closer and come and help!!). xxxooo

  46. Ashley says:

    Thank you so much for sharing the details of your lives, it’s inspiring on levels I can’t even articulate right now.  One thought, I have a few adopted kiddos too, one with special needs, and for her feedings and IV infusions at home we use a tiny back pack we got from our home health company to put the pump and bag in so she can be mobile, perhaps that could be helpful for Tommy, though I know you probably have a lot of considerations to make in seeing if that would work.  Actually any smaller back pack could work very well for this purpose, and adding a few button holes for tubes and velcro for the bag would make it just as functional as the ones made for this.  One more thing, we have used peppermint essential oil with great success to help combat nausea and vomiting for our daughter.  We just apply it strait on her tummy, but it could be diluted with a carrier oil if the “icy-hot” sensation was too much.  Hugs!!

  47. Susanna says:

    Hi Ashley! Thanks for your comment and suggestions! We’ll definitely look into the peppermint essential oil! We do have two of those backpacks and they’re great–one for the pump and one for extra tube supplies when we’re on the road. When Tommy’s actually getting a feeding, he has to be kept relatively immobile and have the tubing kept out of reach and out of mind as much as possible, because he cognitively doesn’t understand what is going on and doesn’t have much impulse control, but he is very quick and very strong. If you can picture a baby of 6 to 11 months old, he acts very much like that, reaching out and grabbing everything within his reach, but unlike a baby he scoots around on his back on the floor, his arms (reaching range) are longer, and he doesn’t put things into his mouth. We are used to scanning the area around him and moving items like we would for a baby–pushing a bowl of food (for instance, on Katie’s highchair tray next to him) out of his reach, warning people who get close to him and are wearing glasses, dangling earrings, or necklaces (he’s broken several since coming home), pushing the piano bench in if he’s on the floor so he doesn’t kick it over, keeping the IV pole where he can’t grab it to shake it back and forth, bang it against things, and crash it to the ground. Since coming home sweet boy has gotten bigger, stronger, and quicker. :) So pulling his tube out is a constant concern during feedings. Soon after bringing him home, it became obvious to us and everyone who observes him in real life (and probably to everyone reading this blog who has personal experience caring for people with needs like Tommy’s) that if he does not make progress cognitively and behaviorally but does grow significantly larger and stronger, that I would eventually need help caring for him everyday. Just a different kind of daily challenge. :)

  48. Nicole says:

    Wow. Of all his challenges, the fact that he cowers and covers his head is the most heartbreaking.

  49. Nicole says:

    I guess the second part of my comment was cut off. Do you have/need sponsors for Tommy’s care? If so I’d like to know. I always wished I could be more like you, but I don’t have the patience. So, in it’s stead, I like to help those who do what I cannot. Does that make sense?

  50. Susanna says:

    Nicole, what a kind offer! I will email you…

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