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.
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.
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?
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.
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.
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.
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.”
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.
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.
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!
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.
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?
James: I jumped on the second-year-old horse, and zoomed away!
Verity loving one of her babies.
Peter sat next to Tommy during Memory and History Time and was rewarded like so…
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.
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.
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.
She occupied herself with toys next to the person each time; although it was obvious their presence registered with her, she acted appropriately.
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.
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.
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).
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>
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.
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.
Where will this all end up, baby boy?
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.
How I love this little face with the almond-shaped eyes and the crooked little grin.
Hey boys! Show me tough guy!
Stephen: Should I tell you a secret?
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.
Stephen: I wonder what pillow.
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.”
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.
Baby’s got the eyebrows and knows how to use ’em.
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.
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.
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.
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.
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!
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.
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.
You two are rare treasures and we are so privileged to have you in our family.
Kate-Kate enjoys her daddy reading aloud in a different way and for different reasons than her siblings, but she enjoys it nonetheless.
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.
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.
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.
Tommy’s second IV treatment for his osteoporosis meant he was hooked up to two sets of tubes at once.
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.]
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.
Verity’s morning school time.
Stack them up…
…clean them up!
Look out, world, Verity can unscrew lids now!
Verity has the most delicate, lovely eyebrows.
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.
Kids have the innate skill of getting fun out of just about anything. It’s a gift. And a curse.
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!
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.
Ben doesn’t take kindly to being wakened from a sound sleep and stuffed into a jacket and car seat.
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.
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.
I do almost all Tommy’s basic care and am always right there to comfort him and talk him through any medical procedures.
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.
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.
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.
I try to pour on the affection to make up for it.
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.
We do a lot of open hand touching throughout the day.
I do a lot of rocking and singing special Mommy/Tommy songs I made up, and this always makes him smile.
He is soothed and calmed by snuggling–just soaks it up.
His smile is like a special reward. We all love to see Tommy happy and smiling.
Little smidgeon first started pulling up to standing at 6 1/2 months.
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.
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.
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.
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.
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.
One sweetie on Thanksgiving morning.
Two buddies on Thanksgiving afternoon.
Bellies full of Thanksgiving feast and a rousing game of Killer Uno on Thanksgiving night with their aunt, my younger sis.
Laura: Do you like it that Joseph and Lindsay got engaged?
Stephen: Because then we can go to the Rabes a lot. And have dessert.
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!
The happy pair. Their joy is contagious.
We are so proud of you and excited for you, Joseph and Lindsay!
“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